Danny Canary

In Loving Memory of Daniel J. Canary

2009-06-10T19:50:00.002-04:00

My brother Kevin put together this picture of Dan with the quote from Dan's memorial card. Thought I'd share this with everyone who isn't in the Facebook network. We will always miss and love you Dan.

Daniel Canary Funeral Services

2009-06-01T22:30:00.001-04:00

Dan's funeral services are as follows:

Wednesday June 3rd from 4:00pm to 7:00pm
Burke Funeral Home
628 North Broadway
Saratoga Springs, NY
*Parking available behind building or on street

Obituary will be in the Saratogian & Post Star on Wednesday (Also Saratogian.com and PostStar.com)

Thursday June 4th at 9:30am
St. Clement's Church
231 Lake Avenue
Saratoga Springs NY
*Burial following the service

A celebration of Dan's life will be at the Knights of Columbus following the burial.
Knights of Columbus
50 Pine Rd
Saratoga Springs NY
(Approximate time 12:30pm to 3:00pm)

PLEASE FORWARD THIS INFORMATION ON TO OTHERS.

Dan Updates 05/21/09

2009-05-22T01:06:00.001-04:00

Today Dan had his first dose of radiation treatment. It was pretty quick and painless taking about 15-20min. For comparison, it took almost an hour and a half when Dan had the full body radiation before at Dana Farber. So far no real adverse effects from the radiation though, but side effects are expected by probably next week. At the moment he has the usual headaches, fatigue and coughing bouts. Unfortunately he has more double vision again, but we know thats caused by his last high dose chemo regimen and should go away again in a couple weeks.

Since Dan's radiation therapy runs Monday through Fridays and Radiation Oncology is closed for Memorial Day, we'll be heading back home again tomorrow (Friday) for the weekend. As always, let us know if you have any questions.

Dan Updates 05/14/09

2009-05-22T01:03:00.001-04:00

On Tuesday Dan had his radiation simulation. They lined up where he'll be radiated and gave him three small tattoos to help line up his future radiation treatments. Dan also had some routine blood-work that showed his red cells were very low. Actually, he was at a point where they were surprised he was even up and around walking. They gave him two liters of red cells and some fluids before letting him leave.

Wednesday morning we met with Dans doctors. His counts were much better and in general he was feeling a little better overall...but still not great. As far as the "current plan" goes, Dan will get a scan of his chest and start receiving the radiation therapy by the end of next week or so. This will be a long process as he will be receiving radiation on a daily basis for thirty days straight. Some side effects will include burns at the site, swelling of his esophagus, difficulty swallowing/eating, and damage to the top of his lungs. After this radiation treatment, the next tentative course of action planned will be to go to Boston for a Donor Lymphocyte Infusion (DLI). The DLI is where Dan will receive more stem cells from his original donor. This procedure will not be as evasive as his original Allo stem cell transplant, but it'll still be uncomfortable though and have risks of Graft Versus Host (GVH) disease (where his immune system rejects his body). In general it "should" be a shorter prep and recovery time for Dan.

Besides that, Dan gave one of his nurses and his doctor a left over t-shirt from the benefit. Soon after, all the nurses and doctors from the outpatient oncology/hematology clinic were asking for shirts. Thankfully I had the box of left over shirts in my Jeep so I brought in a bunch more. Even after the second batch of shirts, more nurses and docs came looking for them. I brought in another stack and this time Dan's nurses took them and said they'd collect donations for all the shirts. By the time we left the office, a good twenty nurses/doctors were wearing the Dan Canary Keep Fighting t-shirts. We both have to admit it was pretty awesome having them all walking around with the shirts on.

Dan Updates 05/11/09

2009-05-12T06:26:00.001-04:00

First I want to give a big thank you to everyone who was able to make it to Dan's Cancer Benefit Dinner on Saturday. We had an outstanding turnout of friends, family, and the community that not only showed Dan all of our continued support through his fight with cancer, but also helped raise almost $9,000! That will be a big help towards his medical bills and living expenses while he's receiving treatments. A special thanks to Dan's awesome cousins Becky, Carol, and Kelley. They planned the majority of the benefit, gathered tons of donations from all over the capital region, and rallied family & friends together to help make this one truly amazing event.

Dan and I made it back to the Hope Lodge in Vermont late last night. This morning we headed over to Fletcher Allen's outpatient Oncology/Hematology clinic for Dan's appointment. They drew blood and gave him some fluids and his neupogen shot. The results of his blood-work showed a decrease in his white cell count/neutrophils and low platelets...though he ended up not needing any transfusions today.

Tomorrow Dan has an appointment with his Radiation Oncologist where he will undergo some simulations of radiation therapy. This will be much different then the full body radiation he received back in December at Dana Farber before his stem cell/bone marrow transplant. This radiation therapy will consist of pinpoint radiation directly at the mass. There is no set schedule as to when Dan will be starting the radiation, but it is something they plan on doing after the mass has shrunk to a certain size.

Dan Updates 05/04/09

2009-05-04T16:12:00.000-04:00

We finally made it back to Hope Lodge last night. This morning we went to Dan's outpatient oncology clinic appointment. His blood work looked good and his white counts seem steady at the moment, but they are sure to drop substantially in the next few days. He'll have follow up appointments daily this week at the clinic. Dan also went to his Opthamologist this morning. Unfortunately some of the side effects of his chemo took place in the waiting room and he threw up a few times. Good news though, Dan's double vision problems are completely gone! He no longer see double of everything. Dan does have some blurry vision, but that is another side effect of this chemo regimen and should go away in the next couple of weeks.

Dan Updates 05/02/09

2009-05-04T16:10:00.001-04:00

So the side effects of this chemo regimen have already started unfortunately. At the moment he is starting to get more of those painful mouth sores, headaches, and some slightly blurry vision (unrelated to the double vision). Though on a good note, Dan's double vision has gotten much better and will hopefully continue getting better!

Besides that, Dan's friends Tiffany and Nick came up for a good portion of yesterday. It was really nice having visitors...I don't think either of us have laughed that much in a long time haha. Dan and I will be here in VT for quite a few weeks between the hospital/hope lodge and will hopefully be back for the benefit. In the meantime, visitors are always welcome as long as you are not sick...no swine flu please! Anyway, this evening they will be starting the 24 hour chemo infusion so Dan and I should be able to make it back to the Hope Lodge by tomorrow night or Monday morning at the latest. We are both looking forward to getting back to the Hope Lodge soon.

Dan Updates 04/29/08

2009-04-30T14:29:00.001-04:00

So we are back in Fletcher Allen Hospital on the Shepardsons Oncology floor. Dan is at the end of the hall in a private room 672 and will be here until about Sunday or Monday. They started his 3 hour chemo infusion of Cytoxin at 2:30pm. This will be the same reg1men of chemotherapy Dan had about 5-6 weeks ago; 4 days worth of 3 hour infusion chemo every 12 hours and finishing with a huge bag of chemo infused for 24 hours straight.

Dan Updates 04/27/09

2009-04-28T00:13:00.004-04:00

So we are back at the Hope Lodge in Burlington, VT again. Some of you might have seen Dan & I these past couple days running around getting errands done and making a few visits. His counts were up and his doctor let him come home after his appointment last Friday. Those of you that did see Dan this past weekend were able to witness his nice mohawk he was sporting. His hair was falling out again so he decided to have some fun with the hair he had left...though the rest of it has fallen out since then.

Now his appointment on Friday had some good news and bad news. The good news is that the mass has indeed shrunk a little bit again since the last scan of his chest. The bad news is that Dan's fight is far from over. Dr. Grant said that tentatively Dan should expect to be here in Burlington for at least another three and a half to nine weeks. This Wednesday, Dan will start receiving another high dose regimen of chemotherapy. He will need to be inpatient at the hospital through the majority of this regimen. There are no specifics yet as to how long he will need to stay in the hospital for, but we are anticipating about a week to a week and a half. After that, they are still aiming at trying some pinpoint radiation therapy depending on how he is reacting to the chemo. Then, if all goes well, the next plan is for Dan to head to Dana Farber in Boston for another Stem Cell/Bone Marrow transplant. The procedure is called a Donor Lymphocyte Infusion (DLI) this time, which will be much less evasive than the last transplant. That's because they do not need to wipe out his current immune system again, only add to it...trying to strengthen the original transplanted immune system this time and have the Lymphocytes attack the cancer. So basically, he's receiving more stem cells from the same donor and will not need the full body radiation & extreme high dose chemo like last time. At least they are sparing him from that process, though there will be just as many risks of permanent Graph Versus Host (GVH) side effects this time as there was last transplant.

As for today, Dan saw his Ophthalmologist at the hospital. Lately his eyes have been "juicing", as he has described it. It's a clear tear like substance coming from his eyes that makes his eye lids stick shut and also affects his vision...making it blurry. They determined he has a bacterial infection in his eyes which will require drops four times a day and an eye ointment once a day. He will also continue using his antibiotics he's currently on and have his eyes re-checked next week. They do not think this is at all associated with his double vision, but can't be sure since the cause of the double vision is still not 100% determined. If his double vision continues though, they have suggested Dan see a Neurologist or possibly even have eye surgery to fix his eyes. Surgery would be much further down the road though.

Well I'm going to end with some good news, Dan has been able to eat some food again! Those painful mouth sores have finally almost gone away completely...allowing him to tolerate much more than just water and ensure/boost shakes he was surviving on before. His doctors also said Dan’s right lung sounds much better and shows no signs of any more cancerous fluid buildup around his lung. In other news, the next benefit T-shirt is being made and will be available to you at Dan’s Benefit Dinner on May 9th. The shirts will require a donation of $25.00 for each shirt sizes Small through X-Large and a donation of $27.00 for 2XL and 3XL. Cash or checks (made payable to Daniel Canary). I have attached a picture of the shirt to this note. For those of you who will not be able to attend Dan’s benefit, but would like to show your support for Dan’s fight with cancer, please email the number of shirts you want and desired sizes to: DansFightForLife@Gmail.com

Dan update for 04/20/09

2009-04-20T16:23:00.001-04:00

Yesterday Dan received a platelets transfusion as well as a few bags of saline since he was feeling a little dehydrated. His immune system is still rock bottom and these past few days he's developed some really painful mouth sores from a result of his last high doses of chemo. The mouth sores have really made it extremely difficult for Dan to eat or drink anything...he can barely drink water or Ensure shakes at the moment without a lot of pain. They gave him multiple mouth rinses with lidocaine, which mildly relieves the pain, but so far nothing has really helped to alleviate the pain to a point where he can eat.

Tomorrow Dan will be getting a few blood tests and then most likely a couple red blood cell transfusion per the last conversation he had with his doctor. I'm heading home today, but Zack is here and will take Dan to his appointment tomorrow as well as give an update on how things went.

On a side note, many of you have ask if you could help with the Cancer Benefit Dinner for Dan. If you would like to help in any way or you are looking to buy tickets for the benefit, please contact Dan's amazing cousins who are planning this event to support Dan. Their names and phone numbers are below. I also tagged them in this note so you can send them a facebook message or add them to your friends.

Carol Bozzo
885-2747

Becky Cook
309-3540

Kelley Marsh-Bloem
581-9960.

If you can't make it to the benefit and would like to donate to Dan, the best way would be to send your donations to his house. His mailing address is:

Daniel Canary
17 Concord Drive
Saratoga Springs, NY 12866

Dan Update for 4/15/09

2009-04-15T16:55:00.000-04:00

So Dan and I just got back from the Ophthalmologist appointment with Dr. Alexander. She is super nice and just as gun-ho about figuring this out as Dr.Grant is! She is leaning towards the double vision Dan is having being caused by one of the medications he is on. What we are not sure of yet is if has and/or will cause any permanent nerve damage to Dan's eyes. Dan will be going for an mri either tomorrow or Friday of his eye lobes to double check and make sure that there is no nerve damage in there. His x-ray this morning was very quick and easy, but we have not gotten the results of that yet. He has appointments again tomorrow and Friday at 830am with Dr.Grant. His counts have come up a little bit since yesterday which is awesome, but he is still very neutrapenic so if you are sick keep your distance! Hopefully should have a schedule of who will be up here next week very soon, after I get mine from work and collaborate with Sean, but if anyone has some time to spare please do so I know Dan loves the company!!! That's all for now!

Zack

Dan Update for 04/14/09

2009-04-14T22:06:00.000-04:00

Hey everyone Zack here, so Dan and I went to his 8:30 appointment today where he had some labs drawn. He also got a wonderful neupagin shot, which helps his body to produce more white blood cells. After this we made our way over to a private room to meet with Dr.Grant (Dan's main Dr) whom asked a few questions and ran off to another appointment. We got left with one of the other Dr.'s whom I don't remember his name. Dan is still experiencing the double vision, so tomorrow he will go to meet with an optometrist to hopefully get some light shed on the situation as no one has a clue still on whats causing it. Also his counts came back and his white blood cells went from 4000 to 700 overnight. Which means Dan's immune system is getting weak again. Good news is that his lungs did not sound like they are filling up again, but tomorrow before his morning appointment he goes for some x-rays to double check on that situation and make sure that they are not filling up. After I leave here tomorrow Dan's Grandma will be up at some point on Thursday, but after that I am not sure who else. If anyone has some time to just come hang out with Dan try and get a hold of myself or Sean and we can work something out! More tomorrow after the Doctor's!!!

Zack

Dan 04/12/09 Easter

2009-04-13T00:43:00.000-04:00

Well Happy Easter everyone. Dan and I had a pretty good day today. Being out of the hospital is pretty nice, especially for the holiday. Dan's family came up for awhile and brought us both some Easter baskets which rocked. Our friends Rock and Chris also came up to visit and hang out which was cool. Everyone took off around 3:30p and Dan and I have basically been watching TV and napping for the rest of the day, nothing else too exciting for us. Unfortunately the volunteer who was going to make an Easter dinner decided not to come tonight. Instead, he will make a big dinner tomorrow night (Monday). On the other hand Luanne, the morning manager here at the Hope Lodge, made a fantastic Easter brunch. French toast, muffins, potato wedges/hash browns, ham, and much more. We both had our fill.

Dan has been pretty tired today. They were giving him very large amounts of steroids each day with his chemo this past week that seemed to keep him almost hopped up. Since being off of it today, he has totally gone the other direction and been very fatigued. Dan has also had a very painful headache that has gotten worse as the night goes on...one that he stated is the worst headache he's ever had. He's taken a few pain pills and has actually been sleeping for a little while now. The headache could be from the chemo this past week, the 24 hour infusion chemo he had all day yesterday (Saturday), or even some of his medications that have been tweaked and switched around a few times. Besides that, the double vision has been really bothering him still. It's to a point that he can barely focus on something a foot in front of him. If you are standing a few feet in front of Dan, he will see two of you standing a few inches apart. It obviously doesn't make his headache feel any better either. The MRI he had on Friday did came back negative for any cancer or other abnormalities, so that is a very good thing.

For this week Dan will be getting Neupogen shots to boost his immune system again. He will also be having blood work at the Oncology/Hematology Outpatient clinic on a daily basis...8:30am every morning this week. Our friend Zack will be up tomorrow (Monday) after he gets out of work and will stay until Wednesday night. At the moment, I'm not sure who will be up after Zack leaves Wednesday night. Dan mentioned Ashley might be up at some point at the end of the week, but I'm not sure when or for how long. If anyone has some time to come up and be with Dan this week, please let me know.

Quick update #2 for 04/10/09

2009-04-10T16:33:00.000-04:00

I just spoke with Ellen and Dan recently. The MRI took a bit longer than expected, about 2 1/2 to 3 hours, but Dan sounded pretty chipper and in good spirits still. Besides the doctors checking into his vision issues, they stated he should be able to get out of the hospital tomorrow (Saturday) so he can spend Easter at the Hope Lodge. He is VERY excited about that :-) We probably won't know the results from the MRI until later this evening or possibly not until Monday.

Morning update for 4/10/09

2009-04-10T10:37:00.001-04:00

This morning Dan said his vision problems are getting even worse. He woke up with horrible double vision so they will be taking him to get an MRI around 1:00pm today. The MRI will last about an hour and a half so they will be putting him completely out due to his claustrophobia. I'll keep you updated as I hear more.

Just a couple quick updates...

2009-04-10T00:23:00.002-04:00

Wednesday afternoon Dan said doctors preformed yet another thoracentesis. That's the fancy procedure used to drain the fluid from between his lungs and chest wall (the pleural space). Here's a website if you want more specific information on the procedure (http://www.webmd.com/a-to-z-guides/thoracentesis). Dan said "they removed two liters of lung juice" this time. Just think of that 2-liter bottle of soda from the store in your chest...not very comfortable.

Today (Thursday) Dan's aunt Ellen is hanging at the hospital with him and will probably stay until Friday evening or Saturday morning. I'll be heading back up Friday myself after work and will be staying through the weekend. Also, Dan has switched rooms yet again. He is now in room 470 on Shepard 4th floor.

As usual, if anyone has any questions, please feel free to call, text, message via Facebook, or email me. If you want to get a hold of Dan or pass on your get well wishes, sending a text, facebook, or email message is usually the easiest for him. You can call him too, but there are many times when he may not feel well or up to a phone conversation while in the hospital.

PS- Sorry to those of you without Facebook interested in Dan's treatments. I had forgotten to update this Blog since so many of you have transitioned over to Facebook. I'll try to remember from now on to keep this updated as well.

Thanks,

Sean

Daniel Canary Update..since Sean's last facebook post.

2009-04-08T11:13:00.002-04:00

Hi there, Ashley here. Soooo..much has happened since Dan got out of the hospital in Boston..and he is currently back in Burlington, VT. Not sure who still checks this, but Sean has been keeping everyone posted on Facebook..but I'll do my best to start copying and pasting here to keep those informed who don't have a Facebook account. Much has happened, but I'll just write about the past couple of days.

Dan is currently receiving his NEXT high dose chemo regimine. For those of you who recall the high dose Ara-C chemo regimine he was last hospitalized for..this is a lot more intensive. The high does Ara-C is just a PART of this current regimine he's on. His doctor is determined to do everything in her power to shrink the tumor with chemo, followed by localized radiation. His lung has also presented with more fluid in it, his Xray from yesterday morning showed that it was about 1/3 full with fluid. We're waiting on the doctors to round now to let us know what they want to do about draining it again. From what I gather, Dr Bryan (the Internal Medicine Resident on Dan's case) is under the impression that they'll do something to drain the fluid again..most likely just an isolated draining as opposed to placing another catheter. All of the doctors we have spoken to are convinced that the fluid collection should stop once the chemo starts to work.

He's inpatient for what his doctor said should be 3-7 days. Dan is pretty adamant about getting out by Easter..sooo..hopefully they'll be able to work with that so he's able to spend Easter dinner at the Hope Lodge, and not choking down hospital food.

Other than that, we're just sitting around in his hospital room, listening to music (no longer having a dance party now that they gave us a room with an extra bed..so there's not room anymore..it was fun while it lasted though). Once the doctors come in, I'll hopefully have more information. Right now he's just getting infused with Mesna, which is a protectant for the kidneys and bladder.

Also, for those not on Facebook..there will be another benefit for Dan in May. Here is the general info:
Please join us on Saturday, May 9th from 5PM to 9PM for the Daniel Canary Cancer Benefit. The benefit will be held at the Episcopal Church in Ballston Spa. The cost is $15 for adults and $5 for kids. Tickets available at Best Buy or contact Carol Bozzo at 885-2747, Becky Cook at 309-3540, or Kelley Marsh-Bloem at 581-9960.

Anywayyyy..that's all I've got for now, but I'll write more once we talk to the doctors. As always, feel free to contact either myself or Sean at ANY time with questions or concerns!

Ashley

IT'S ABOUT TIME...

2009-01-03T01:16:00.003-05:00

So..the moment we've ALL been waiting for is upon us..

DAN IS GETTING DISCHARGED TOMORROW!! I know, I found out earlier and I'm shocked. Apparently, his doctors feel that he is doing so well that he doesn't need to be in the hospital anymore. On top of that, HE IS HEADING HOME..TOMORROW!! His doctor also said that he didn't see that it would be an issue if he lived at home and went back to Boston once a week for his follow up appointments. It's going to make the whole situation a lot easier on both of us..because we'll be able to be home..and I can get a job and it'll just be great!

Anyway..I just wanted to let everyone know!

Yay! Thank you all so much for your continued love and support!! It's still not over, but it sure is great to know that he's definitely on the road to recovery!

-Ashley

News!

2008-12-29T23:25:00.002-05:00

Soo..it's been a couple of days since I last updated..It's been a busy week. We had a very nice Christmas with Sarah, Lauren and Sean last week. It was nice to have company for the holiday..the city tends to be lonely sometimes.

So...GREAT news! Dan's white blood cell count has started to come up. This means that the cells are starting to be an active presence in his body..which is what we've been waiting for. His doctors told him that he could be discharged in about a week or so if his numbers hold steady. How awesome is that?! Then it's just heading back to the hospital a few times a week for blood tests and whatnot..so that's definitely great news.

He still hasn't been feeling great. He's still having throat problems, but is still on pain medication that he controls himself. So, at least he's in control of it and doesn't have to wait.

So, I am home. I'm staying with my grandparents for the time being, and hopefully going to be getting a job here. I feel terrible about not staying in Boston, but I have several reasons for NEEDING to be home for a bit..even if it's just temporary. Our finances aren't getting any better if I'm spending ALL of my time in the hospital..and even though I just got home yesterday, I'm pretty sure I already have a hostessing job..I just have to wait until the hiring manager gets back from vacation, which will be next week. I'm also going to be taking at least one online class to keep myself in forward motion toward graduating..eventually..haha. I've fallen far behind now, so I'd like to put myself back on track with that. I intend to head to Boston to visit as often as I can..but considering the job market there wasn't too promising..and this seemed to work better for my emotional state, I needed to come home. I hope nobody thinks that I'm being selfish in this..Dan and I have both discussed it and he's very understanding about the whole thing, and I just hope that everyone else can understand as well. Please feel free to contact with questions concerning that.

Also, Dan's room phone is available to call if anyone wants to get in touch with him. 617-732-4217..I believe it only operates between 6am - 9pm..soo..preferably between those hours..and if he doesn't answer wait a little while and then call back because he might be sleeping.

Anyway..that's all of the info I really have for now..please feel free to contact me at any time with questions or concerns! Thanks to everyone for the continued love and support!

Ashley

Update on Dan

2008-12-23T15:37:00.002-05:00

Soo..I wanted to send a quick upate about Dan. Everyone wants to know if his body handled the cells..but we don't know yet. We won't know until his white blood cell counts start to come up..which should happen in about 8 days. So..we spend our days in the hospital not doing very much at all.

As far as how he's been feeling..he's been feeling really crappy. He is having some severe gastro-intestinal problems..and isn't producing saliva in his mouth. They have put him on morphine to help him control the pain a little bit, and according to him, it helps only a little bit. They put him on an insulin drip to help control his blood sugars..which have been on the high side. They said that this could be caused by infection, but his blood cultures haven't produced anything that would suggest that. He has compared his pain to having a blender in his stomach tearing everything up. Unfortunately, the doctors round in the morning before visiting hours start, and I don't get to ask questions. But, his transplant doctor stopped in last night and just said that it's a "wait and see" situation. Trust me, I know it sucks..but unfortunately it's the best I have for right now. They've been giving him blood, and he's running a small fever right now.

Soo..needless to say..it's not going all that great in Boston right now. We're both still very excited to be having visitors for the next couple of days, and I've been stressed out of my mind. But, thanks to the help of some fabulous friends and family..I'm feeling MUCH better today!!

Anywayyy..that's all I really have for now..I know it's not much, but it's something. If I don't get a chance to write before then..Merry Christmas everyone! We miss all of you, and wish we were home to celebrate the holidays with everyone!

Ashley

DAN'S NEW CELLS!

2008-12-19T16:35:00.002-05:00

Soo..Dan's stem cells are hereee! He'll be getting them within the hour..so we're both very eager to hopefully get this situation under control with this transplant. We were concerned that the cells wouldn't make it because of the bad weather..but they're here and ready to rock and roll. I'll keep everyone posted on how he's doing once the cells are in, as I'll be leaving here around 7ish..but back here early morning to hang out with him again for the day.

Ummm..other than that, not too much going on. Dan's been very sick, and obviously not feeling up to doing a heck of a lot. Even though he can't do much as it is..he's at the point where he's not really up for being talkative or anything.

We got an AMAZING surprise the other day!! We received a Christmas present from an anonymous donor through the Harvard Business School!! We got $500 in Best Buy gift cards, a digital camera and these awesome Bose headphones!! We are shocked and overwhelmed at the kindness we've been shown by family, friends and perfect strangers alike. I did want to take a moment to thank Dan Canary and his family from Florida!! They have been in contact with me on a couple of occasions to just send out their thoughts and prayers..and their generosity is inspiring. As well as everyone else who has dedicated all of their time and energy into helping us get through this exausting time for both of us. And Sean and Zack..I can't thank you both enough for coming and hanging out with me outside of the hospital. It sucks that Dan can't get out at all..but it's definitely nice for me to get out and about for a bit, and you both made that possible..so huge thanks..you're both the greatest!!

So I just wanted to update with that information..because it's obviously HUGE (and why we're here)..and I'll keep everyone posted on how Dan is doing post-transplant. If anyone ever feels the need to call ever, for whatever reason..please do!! I have tons of free time on my hands and would love to chat if anyone is bored..haha.

We love and miss you all!

Ashley

Dan's Address in Boston

2008-12-18T11:53:00.001-05:00

This is the address everyone can use while Dan is IN the hospital.

Daniel Canary
75 Francis St
Tower 6A Rm 16
Boston, MA 02116

I'll update more later!

Ashley

Short Update

2008-12-16T18:15:00.002-05:00

Soo..the past couple of days have been like pulling teeth. We spend a majority of our time sitting around watching movies. It's great, but it definitely gets old after awhile. Dan got a new PICC line put in today. They'll use it to draw labs, administer medicine, or give him nutrition if needed. He also got his 3rd & 4th radiation treatments today. He's got 3 or 4 left, ending on Thursday. Then he gets his new cells this coming Friday!! Soo..let's pray that the cells cooperate with his body.

Other than that, we've just been hanging out and trying to figure out ways to keep our stress levels down. I'm still in need of a job, so if anyone knows someone, or knows someone who might know someone else who knows of something..PLEASE let me know. I've left some messages for some people and sent out my resume to a couple of places, but I'm not getting the prompt responses I'd obviously prefer.

Anyway, that's really it for now. Please feel free to call or leave messages at any time. We love and miss you all!

Ashley

Dan's New Life (for now)

2008-12-14T21:06:00.002-05:00

Sooo..the fact that it's going to be a long next couple of months wasn't really a surprise to us, but we're learning just how intense life is in the Bone Marrow Transplant unit. Dan will be confined to his room for the next 5-8 weeks..with very few exceptions. Exception #1..he needs to go get radiation (tomorrow-thursday..2x/day), but he must wear a mask, gloves and a gown while there. Exception #2..he gets up to walk around the teeny semi-circle that is the BMT unit..also must be wearing a mask and gloves. Exception #3..I'm not sure there is one....but seriously..it's going to stink..a lot. There is a window in his room, with a lovely view of the building next door..and THAT'S IT. No other windows for him to look out of. Movies..computer..and not much else. So..if anyone comes to visit, make sure you like to watch movies..haha.

Everyone who enters the room must wear a mask and gloves also. He's not allowed hugging or kissing. Handshakes..and High-Fives are how he can show physical affection to everyone. Ummm..he's required to shower every day, and the have to strictly monitor ALL (yes, all) of his I's and O's..excitingggg. So far the nurses have been really great! I think that it's the same situation as at the other hospitals..everyone is impressed by Dan and how he's usually pleasant and has a great sense of humor, even when he's clearly going through a rough time.

But, the good news is that Dan was feeling better today. He was queasy when I left this evening, but hadn't thrown up all day..and no more fever, which is great! Hopefully we'll be able to get a couple more days of him feeling at least relatively well in before it goes from bad to much worse.

Other than that, not too much going on. Sean came up for the day yesterday and spent the night. So, that was nice. Our friend Zack is coming out tomorrow morning, and Dan's cousins Sarah and Lauren are flying in from CALI to spend Christmas with us (YAY!). So, we're definitely excited to have people coming to visit! If people would like to come visit, please let me know, I have to work out some of the details with the hotels and whatnot..because it's apparently more difficult to keep track of everything than I had originally anticipated..haha.

Anyway, as always, please feel free to call, text, send messages, singing telegrams..whatever works! We miss and love you all!

Ashley

Today was a terrible day.....((there will be some venting in this post))

2008-12-12T20:59:00.002-05:00

So, we're kicking ourselves for thinking that anything about today could have gone smoothly. Ugh..it was terrible. Sooo..Dan was scheduled to be at the hospital for 7am to get his last dose of the head radiation..and then we were to head right up to the clinic for a blood draw and some platelets..which we did. He got his blood drawn around 730 and we were back in the waiting room for the results and the platelets..expecting that it would be about a half an hour (we were the only people in the clinic at this point in time)..930 rolls around and I decided that I should probably ask someone what was going on. Apparently..the person who drew the blood was also supposed to collect a sample to type his platelets..which she never did..so we sat around for 2 hours waiting on platelets that hadn't even been ordered!! UGHHH..but it gets worse. We're told that they'd be there in 40 minutes..which would leave us at 10:10am..they FINALLY called us in at 11:30. Dan gets his platelets (mind you..his appointment to get the new hickman was scheduled for 9am..we're already 2.5 hours late)..and gets a fever in the mean time. So..they decided that they weren't going to put in the new hickman and were just going to give him fluids and blood.

They gave him fluids, but someone forgot to order the blood. Soo, poor Dan is miserable and sick in this extremely crowded clinic..throwing up, and not holding any fluids down. They finally decided around 5 that they would call for a transport to actually get him up onto the transplant floor. Naturally..they didn't make it until 6.

So..today was all around bad. Dan is inpatient now, and extremely sick. We're not sure as to how this sickness came on so fast or what caused it. There was some minor swelling in his face, which is going to be monitored by the nurses overnight. I left a little before 8pm and he was sleeping..but had gotten sick a couple of times in between. I'm hoping that his fever will go down overnight, and he'll feel a little better tomorrow. They may be placing another PICC line in (he got one in Glens Falls, and it had caused the PE..but his platelets are so low at this point in time, they don't believe a blood clot is a likely side effect this time).

Anyway, I'm back in the hotel for the night, and I don't intend to go anywhere else until it's time to go back to the hospital. Feel free to call with any questions, concerns, or even if you're bored and just want to chat. (518) 505-7928.

We love and miss you all! Thank you all so much for your continued love and support!

Ashley

Back in Bean Town!

2008-12-11T09:37:00.002-05:00

Okayyy..so we've survived the past couple of days! All of our stuff is officially out of our apartment :o( It's kind of sad, but it's probably for the best right now. The cat is at my mom's house for now..and all of our stuff is in storage.

HUGE Thank You! To everyone who spent countless hours helping us pack and move everything, and do tons of running around, etc..we got everything done on time, and a portion of the cleaning and repairing has been done already also! We couldn't have done it without you!!

Dan gets his first dose of radiation to his head this afternoon. We'll be spending the better part of the morning laying around and exerting as little energy as possible. Dana Farber has put us up in the Hampton Inn for last night and tonight (Kel, you were right..their breakfast is great! Haha)..for a very cheap price! Which leads to this..While Dan is inpatient, I'll be staying with my cousins Alex and Sheridan..however, if when people come out to visit, they'd want to split the cost of a hotel room with me (it's looking to be about 36/night..which is the cost of the room)..it will be A LOT cheaper..if there are 2 of us, it'll be $18/night. I'll be sending out my resume today to look for a job to help offset the cost of a hotel room for a week or so..because I'd like to give my cousins a break for a couple of nights a week so I'm not in their faces all the time. Soo..whenever you'd like to come stay, just let me know and I'll book a room!

I also have a favor to ask..all of our stuff is out of the apartment, but it still needs to be cleaned so that the apartment people can "turn" it a few days after we're out. The owner has been nice enough to give us our security deposit back, even though we didn't give adequate notice of our departure..they usually require 60 days and we gave them a week and a half. Rick started some work on the molding in the apartment, and has asked if someone would stop by and sand down the remaining spots. He said it's about 15 minutes of work or so. But, I also left a tote of cleaning supplies there..in case someone is willing to help us out. I wish I was able to get back into town to get it done, but it's not possible this week. Also, once Rock is out..which should be about Sunday..there are some holes in his wall that need to be repaired..just from screws and whatnot. PLEASE call and let me know if anyone is able/willing to help..because if I can't find someone, I'll have to come home to do it this weekend.

Anyway..just wanted to update to let everyone know that we're still alive and well after the past couple of days of madness! Feel free to call whenever with any questions, or anything!

We miss and love you all!

Ashley

Let's cram a month into 5 days!

2008-12-05T15:31:00.003-05:00

Okay..SO..here's the deal. After a lot of discussion, Dan and I have decided that it would probably be best to part ways with our apartment for the time being. We're paying out a lot of money on it, and aren't really using it enough to justify the amount we're spending to keep it. So, because of the fact that Dan has to go inpatient starting on Friday, Dec 12..and we have to be in Boston the evening of Wed, Dec 10..we're going to be spending a lot of time in the next couple of days packing and cleaning..and attempting to move everything we own into a storage unit. We'll probably be renting a U-Haul for the occasion, but I am putting out a frantic request for some strong people to help us move on Wednesday morning/early afternoon. I'm hoping to leave Saratoga for Boston no later than 5pm on Wednesday, so it will be an extremely busy day for us!! We just need to get everything taken care of before he officially goes into the hospital, because I probably won't be able to get back into the area until after the first of the year (the first 2 weeks are crucial parts of the transplant process, and I won't be leaving Dan's side during that time..except for when they kick me out at night..haha).

Also, the Boston Hope Lodge has been extremely difficult when it comes to being accommodating, and my cousins Alex and Sheridan are being insanely helpful and letting me stay with them during the weeks that Dan is inpatient. So..how totally awesome is that of them?! So, I'll be staying with one or both of them throughout Dan's inpatient.

Anyway..we should be home sometime tomorrow afternoon (hopefully as early as we can make it, as we have a VERY busy next couple of days coming up). If anyone is available to help us pack or help us move..it would be extremely appreciated. Dan isn't able to do much these days, so I'm trying to recruit a couple of people to help with the packing process as well so I don't have to pack the whole apartment by myself. Call my cell if you're able to help! THANK YOU!

Ashley

And, we'll obviously be around if anyone wants to stop by and say hello. Dan is going in for a very dangerous procedure, and I'm sure would love to see as many people as he can before we leave..it would definitely help to lift his spirits!

Love and miss you all!

BOSTON!

2008-12-03T19:23:00.002-05:00

Okay..so we're in Boston at their new Hope Lodge. It's insanely nice, and a lot bigger than Burlington. It feels less like home, but it'll do considering we don't have a choice. We spent ALL DAY at the hospital..it was pretty much the worst thing ever. Dan had about 14 appointments altogether, and it was one right after another. But..we got A LOT accomplished, and have a lot of new information.

We'll most likely be taking up residence in Boston starting next Wednesday night. Next Thursday and Friday, Dan will be getting radiation to his head. They are doing small amounts to ensure that no cancer cells broke through the brain barrier. Sunday the 14th, they'll be putting in ANOTHER hickman line in..like the groshong that he had before..but with 3 valves this time. This will enable them to give him nutrition while he is in the hospital if need be. Also, this will allow them to take one line out if one gets infected or something to that effect.

As far as visitors go while he is in the hospital, it will be limited to one or two people at a time, and everyone will be required to wear a mask and gloves. Also, if anyone is sick, or has been exposed to a sickness, DO NOT COME!! It is EXTREMELY important that nobody comes if they have an illness, as it is even moreso a life or death situation than before. However, Dan will definitely want people to come and see him if they are able to..as it will be an extremely difficult time emotionally..he will be in almost complete isolation for 4-6 weeks. If anyone is available in that time period to come and help me keep his spirits up, that would be great.

Dan will go inpatient on December 15 (tentative date). This unfortunately means that Christmas will be out this year for us :o( . So..if anyone has time off and wants to hang out in Boston for a day or two..I'd definitely love the company..considering I'll most likely be spending a lot of time by myself once Dan goes into the hospital.

Also, if ANYONE is looking for somewhere to live in the Saratoga area..CHEAP..MOSTLY FURNISHED..PLEASE PLEASE PLEASE let me know! Our roommate is leaving on the first of the year, and we're desperate to find someone to take his place! We are trying to avoid giving up the apartment and the cat if we don't need to, and we are in a critical financial position right now..so we won't be able to afford any more than what we are already paying..if we'll even be able to afford that at this point. I'll be looking for a part time job for while we're out here..so if anyone knows of any good waitressing jobs, or something I can do nights/weekends in the Boston area..let me know!

Anyway..that's all I've really got for now. If you have any specific questions, please let me know..I know as far as Dan's treatment goes, I only brushed on certain things, so feel free to ask! Also, we're heading back to Burlington on Friday, and hopefully convincing his doctors to let him stay at home for the last couple of days before treatment. I'm sure that this will be the time when Dan will want to see his friends and family most..as many will be unable to travel so far to see him once he's actually inpatient. I'll keep you posted on that.

OH! Also, I may have a favor to ask of a Verizon customer. I seem to be having major trouble getting cell service with Sprint inside of the Hope Lodge. It is imperative that I get cell service here, in case something happens, and the hospital needs to get ahold of me. I have a couple of options to see if I can optimize my roaming service with Sprint, but as many would guess, it's crucial. So, is anyone out there willing to let me pay to piggyback off of their plan? I don't want to have to switch phone providers, but I definitely will if it is necessary, and I'd rather not have to pay the outrageous down payments that Verizon requires..so..let me know!

We love and miss you all!

Ashley

PS..please keep praying. dan will be entering into a very serious situation when he goes into the hospital and all we can do is pray for the best possible outcome with the less obstacles to overcome. <33

....it doesn't get easier with time...

2008-12-02T00:00:00.001-05:00

So..we're heading to Boston in the morning. Dan has a laundry list of tests that he has to get done on Wednesday..all day long. So we'll be in Boston for 2 nights...I'll let everyone know how that goes for us..

Soo..I really never intended to use the blog as a begging mechanism..but we don't have many options right now. We found out tonight that we'll be looking for a new roommate on the first of the year. If ANYONE is looking for a place to stay and can afford about $350 a month, which includes rent and utilites..we're definitely looking. If we can't find someone to take Rock's place, we're going to have to get rid of the apartment. We just don't forsee us being able to afford the apartment with minimal income and no roommate. Soo..if there are any takers, PLEASE call me! (518) 505-7928.

More......crap

2008-11-24T22:06:00.002-05:00

Okay, so as far as Dan's tumor is going, things are going well. Unfortunately, our biggest issues are the both the fact that his counts still have not come back up from his last round of chemo, and due to his lack of immune system, he has what is believed to be an abscess (or some other form of infection) on his tongue. This has made it extremely difficult and painful for him to eat or swallow. Because his counts are so low, they are not going to lance it to try to get any pus or infection out of it..so they have given him very strong painkillers and new antibiotics which they are hoping will clear up this problem.

They did another bone marrow biopsy today (I got to sit in on this, and it is definitely as unpleasant as you might imagine)..to see if his bone marrow has recovered from his last chemo round. If it has not, it means that it is just taking his body longer to recover than it typically should. If it has, it means that one of his antibiotics (Which they believe is the Bactrim) is preventing his bone marrow from recovering, and the treatment will be as simple as stopping that. Sooo..we're just waiting to figure out which one it is. The painkiller allowed Dan to eat today (which he hasn't done in 4 days)..for those of you who have been following along..he weighed about 260 when this started. He now is down to 195. Re-freakin-Donkulous.

He got a CT scan done today, which is going to let us know whether the fungus that was in his lungs has come back or not (we're guessing no)..but we'll find out more tomorrow. We have an appt in Boston on December 3rd, and from what Dr Grant gathered, they are looking to start transplant mid-December. She hasn't heard anything more, but there are a lot more tests that need to get done before he is ready to go, so it might be a little later than that. Unfortunately..it's looking like we won't be able to get home for Thanksgiving :o( This totally sucks, because it was the one holiday we thought we had to look forward to...soooo..if anyone is feeling ambitious at all..feel free to visit at some point in time..not sure when we'll be able to get home. Either way, I may need to enlist the help of a couple of people in the next couple of weeks. Dan and I have found ourselves with 2 cars up in Burlington...the past couple of times he's been home, the doctors have told him that he can't drive, and now that he's on even more pain medications..operating a vehicle is still out of the question...sooo..if two people might be able to help drive one of the cars so I can come back with just one..that would be wonderful...no rush, but before we go to Boston, it has to be done (apparently parking is much worse there..haha)

..Anyway..that's all the information I have for the time being..once I know more, I will keep you all informed! Please feel free to call, send messages, or visit whenever. It gets relatively lonely out here sometimes..and we love hearing from you all. We love and miss you all!

-Ashley

ONE HUNDRED PERCENT!

2008-11-18T18:02:00.002-05:00

DAN'S TUMOR IS TOTALLY DEAD! HE IS IN REMISSION RIGHT NOW! YAYYYYY! He had a PET scan this morning that was completely negative. The fungus that presented in his right lung is also GONE! They said that the biopsy was inconclusive, but that doesn't seem to have hurt at all..because it's goneee! His doctor told us that he has most likely received his last chemo treatment in Vermont. Now he's got a huge list of tests that he has to get done before Boston, but the process has started, and hopefully we'll know the official date in the next couple of days. This is what we've been waiting for since this whole thing started. 129 days later, and we're where we've been hoping to be! Boston is not going to be easy, but it will hopefully be our last stop before we can go home and carry on with our lives.

We're still hoping that we'll be home for Thanksgiving, but we haven't gotten an official word as to what the plan is yet. We'll let everyone know once we et more information!

We can't thank everyone enough for helping us get this far..we are so thrilled, and glad we have so many great people in our lives to share this with. We love and miss you all!

Ashley

NEW INFORMATION!

2008-11-14T11:22:00.002-05:00

Okay, so new things have been learned! Yayyyy. So Dan's nurse told us that they have narrowed it down to one match! We have an official donor!! Not sure of much of the information about this person yet..but I'm sure we'll learn more as we get closer! We have also found out that they are looking to start transplant in about 5 weeks. She wasn't clear on if that meant that they would start the process in 5 weeks, or if he'll be in the hospital actually having the transplant done. She said she would check on that and let us know. We will hopefully be around for Thanksgiving, so we can at least get one holiday out of this crappy year we've had thus far. Looking like we'll be in Boston for Christmas though..bummer.

Unfortunately..that's the only stuff I know for right now, but I suppose it's a pretty decent start to the next step in his treatment. Other than that, Dan has been feeling a little better every day, with the help of numerous blood and platelet transfusions. He is hoping to make an appearance at home this weekend at some point in time..but he needs to wait for the Dr to okay the trip. Anyway..if anyone has ANY questions, please feel free to ask at any time!

Miss and love you all!

Ashley

Update for Peace of Mind...

2008-11-08T10:52:00.002-05:00

Many people are concerned with the fact that I haven't updated in a while. My apologies. There's just really not too much to write about at this point in time. Dan is out of the hospital..which is definitely great news..but as for his treatment and whatnot, we're at this "wait and see" standstill. It's super obnoxious, I know..but that's where we're at for now. They may go ahead and proceed with the transplant with the fungus still effecting his lung, as long as the medication he's on is at least HELPING to get rid of it. Otherwise, Dana Farber probably would not be too keen on destroying his immune system completely. Sooo..we've been spending our days just kind of hanging out in Burlington. Unfortunately his counts are way too low to bring him home, so we'll be staying here this weekend. In order to get my own peace of mind, I opened up a membership at the Burlington Y. I just got it yesterday, but I felt much better today when I woke up..so..yay.

But..other than that, our lives have been painfully boring for the past couple of days. We're around the Lodge today, Jim and Paula are coming up for a visit in a little bit, so yay for company! As always..feel free to visit at any time if you're available..just not if you're sick :o)

Love and miss you all!!

Ashley

Lung Biopsies 101

2008-11-01T08:29:00.002-04:00

Okayyy..so Dan got his biopsy done yesterday on his lung. It was done using a needle, and extracting cells from the lung. From what I gather, they got a lot of good cells to work with, but this also left him a small leak in his lung. From what I gather, this is a situation that will go away by itself..it's just obnoxious to hear about.

Dan started the high dose chemo regimine the other day as well. So far so good on that. We're expecting to see some not so thrilling side effects in a day or so..and he's going to start feeling crappy.

I'm at home, and I will be clearing out the house plants today. We believe that may have been the cause of the lung fungus. They have been at the apartment for awhile, and I didn't even consider that they might have been a danger to him.

Other than that..there's not too much to tell. I'm at home until tomorrow (I was with him during the biopsy..then came home for the weekend)..and Donna (Dan's grandmother) is spending the weekend with him in Vermont so he won't be by himself. He'll probably be in the hospital until at least Tuesday, so if anyone has any free time and would like to stop up for a visit, I know he'd like that a lot. Anyway, that's all for now. As always, feel free to contact me with questions or concerns.

Love and miss you all!

Ashley

GREAT!

2008-10-29T09:31:00.002-04:00

Soooo..Dan's doctor visited him yesterday evening at the hospital (I missed the event, because I hadn't been feeling great, and headed back to the Hope Lodge to put myself into a Nyquil induced coma)..anyway..

The PET scan from yesterday showed that there is NO EVIDENCE OF AN ACTIVE TUMOR anywhere in Dan's body!!!! The tumor "shell" is still there, but all of the cells are dead. They will be doing another high dose ARA-C regimine starting on Friday..just to make sure that it won't continue to grow while we get the fungus thing taken care of, and that means that we can get the ball rolling with Boston as well! This is freaking awesome! We've still got a lot of work to do until we can officially go home (obviously)..but this is definitely a leap in the right direction!

Anyway, I'm headed over to the hospital now to spend the day. I'll probably come home tomorrow to spend the weekend (I still haven't gotten my "break"..haha).

Feel free to call or leave comments here!

Love and miss you all!

Obstacle # 1,000,000

2008-10-27T13:09:00.002-04:00

Okay..so, Dan went back to Burlington super early this morning to meet with his doctor. I decided to stay home and get a couple more days to myself..someone has other plans.

Good News: Dan's tumor shrunk again. It's about 70% smaller from its original size.

Bad News: Dan had a CT scan this morning, and it showed three spots of fungus growing inside of his lung. He will be getting another PET scan tomorrow morning, and then will be admitted tomorrow afternoon, and will be meeting with the infectious disease team. From what I gather, they will be flushing his lung with normal saline (essentially inducing pneumonia)..and then extracting the fluid to do cultures on it.

I will be heading back up first thing tomorrow morning to hang out with him while they figure out what's going to happen. There's still no plan as to whether they're going to move forward with radiation, or do another round of chemo. There are some conflicting opinions, because some feel that full body radiation during transplant is essential, whereas others thing that it would be more beneficial to get the transplant done as soon as possible. Either way, this new situation in his lungs complicates that. They will not proceed with the transplant until this is completely cleared up. Therefore, we could be looking at a longer haul in Burlington. I suppose we'll see.

I'll keep everyone updated as I learn more about this.

Thanks everyone, love you all!
Ashley

What I Learned in Bean Town!

2008-10-22T18:50:00.002-04:00

Okay everyone..sooo..today has been quite productive, as we've learned a lot more about what is in store for Dan for the next couple of months. After speaking with both of his Boston based doctors..we realize that the road ahead of us is still very long.

Dr DiAngelo (Oncology Dr) has decided that it might be best for them to ditch this next round of chemo, and proceed with radiation instead. He believes that even though we got a pretty decent reaction, another round probably wouldn't get the tumor to where they'd like it to be..and would most likely require 3-5 more treatments for them to shrink the tumor to a managable size. He believe that it should take about 2 weeks of radiation therapy to get the tumor to this point, and he still thinks that Fletcher Allen is the best place to proceed with that. So..that being said..we might end up back in Boston in about 3 weeks..there are a number of things that need to be taken care of in order for Dan to be completely prepared for transplant. The number one thing regarding transplant obviously being..lining up the donor. Dr Ho (Transplant Dr) said that Dan had a number of "matches" and about 4 that looked like they would work best with Dan's body. Although it's not 46 perfect matches..it's better than nothing at this point in time. There are a number of tests that Dan needs to get done before transplant can take place, and he'll also have to go for a teeth cleaning. After transplant, Dan will not be able to go for any routine dental work for about 6 months.

As it stands..once Dan actually gets to Boston to begin treatment, it will be about FIVE months before he's going to be able to come home to live. Sooo..that's kinda the part that sucks for both of us. That's an extremely long time to still be away from home for..but we're prepared to deal with that. We've gotten tons of information about what to expect before/after transplant..so I'll try to incorporate more and more of that information as we get closer..I'll only post the relavant stuff..because like I said..it's a lot.

As for now, we'll be heading back to Burlington at some point in time tomorrow. I think they wanted us back in the morning..but I think we might try to get away with a couple of extra hours at home tomorrow morning. We'll see though. We'll obviously be discussing with his doctors there the whole radiation process and whatnot, and exactly where we proceed from where we are now. I know a number of people have asked about the stem cell donation process..which we have learned is ALL done through blood transfusions. That includes both getting the cells from the donor and transfusing them into Dan. I guess the donor has the OPTION of having the marrow surgically removed..but that doesn't really happen too much anymore I guess (I wonder why).

Unfortunately, as far as our plans, that's all I really KNOW for now. Obviously, once Boston gets closer..we'll have more concrete information to pass along. If possible, we're going to try to come home for the weekend. We're banking on the fact that they won't need Dan in for labs over the weekend, and it doesn't look like they'll be hospitalizing him any time soon..sooooo..I'll let you if we end up coming home!

OH! Sorry..I'd go back and edit, I just don't have the energy right now (yet I could type all of that..and this..sorry) Since Dan will be getting radiation treatments in Burlington..they will NOT be using radiation during his transplants. The week before he actually receieves the stem cells..he will be given huge amounts of chemo drugs (not sure as to which yet)..essentially with the intention of wiping out his bone marrow. Sometimes radiation is used in conjunction with this..but it will be ALL chemo in Boston. The radiation in Burlington will take a pretty sizable toll on his body, and they don't want to risk doing permanent damage by giving him too much.

Okay..seriously though..that's all I have for now. Feel free to call, text, IM, comment, facebook message, telegram, etc..with ANY questions you might have. If I can't find your answers in our massive amounts of information (in this HUGE binder they gave us)..there is a nurse we can contact with questions and concerns.

As always, thank you all for your continued love and support.

Ashley

Updatee!

2008-10-20T19:33:00.002-04:00

Okay, so not too much has changed since the last time I updated. Although..a few things definitely have. Mr Daniel Canary officialky has no hair. Who would have thought he'd make such a cute bald guy?! Pictures coming to Facebook soon. I just haven't had a chance to get them all onto the computer so I can share them with everyone!

Ummm..So we're still in Burlington..but we'll be home tomorrow night. We figure that it'll be easier to leave from home to go to Boston on Wed morning. Dan's grandmother and uncle will be accompanying us on this trip, so that will be nice.

Dan's doctor told us this morning that upon doing some further measurments of his tumor, he has concluded that it has shrunk about 50-60% its original size! That's what they call a partial response..which is pretty fantastic, considering it's the only response we've seen thus far. We're hoping that after they do the next high dose regimine, they won't be able to find any traces of tumor..and then Boston will be that much closer for us. Not that what will be happening in Boston will be enjoyable..but we'll be that much closer to beating this! Thanks for the continued love and support..I think that they're obviously making an impact here!

Hmmm..what else..OH! Our friend Kristen has a Music Industry degree, and has begun planning a benefit concert for Dan at Northern Lights in Clifton Park (which is obviously why she is in charge of this operation..it's clearly her area of expertise!). It will most likely take place toward the end of the year, at least that's the impression she's gotten, and has been in contact with a few local acts to perform..each with their own local fan bases. I know it's probably not everyone's scene, but it's something to think about in the upcoming months. Once more information becomes available, I'll let you all know. This will most likely come at an opportune time, because we've started to get more and more medical bills..and just recently found out that Dan's disability benefits were stopped because they were waiting on additional medical information from the hospital (which we requested be sent, but for one reason or another, our case worker forgot to send it)..no big deal..once everything goes through they'll start sending money again. Sooo..every little bit helps, obviously..and if this show provides a good turnout..it would most likely help A LOT.

Dan most likely won't be able to come home for awhile..his counts are still low (his doctors don't want him to leave the area for too long)..and as soon as they recover they want him back inpatient to begin his next round. I may come home for a few days at some point in time next week. I think I just need a couple of days to get my mind back..I think I've begun to lose it :o) It could be a combination of being overtired and being stressed, but I just think I need some time to recollect myself. It's probably better than being cranky and making Dan deal with me being semi-unpleasant to live with..haha.

Umm..other than that, we've just been hanging out. We had to move rooms today, because they had moved us Friday..and we went home for the weekend..got back Sunday afternoon and realized that our bathroom smelled like raw sewage. Gross! Apparently it was only our room..soo..not really sure as to what the deal is there..but we're in a sewage-free room now..so that's definitely a plus! That's really all I've got for now..as always..please feel free to leave comments or give me a call whenever.

We love and miss you all!

Ashley

The Good..and the Ehhhh

2008-10-16T17:29:00.002-04:00

Okay, so..information!

First..Dan's doctor called last night..around 8:30 or so..and I think it was from his personal cell phone..which I found to be weird. He'd better be weary about the fact that we now have a direct line to him 24/7 (insert maniacal laughter here)..ANYWAY..he made me put him on speaker phone to let us both know that Dan's tumor has shrunk! A lot more than the last time from what I've gathered. The original dimensions..the last time they checked were (11.5 x 5) x (14 x 5.5)..and now..they are (8 x 2.7) x (9 x 4). Sooo..all around, the numbers are looking better. That, unfortunately guarantees Dan an all access pass to the Inpatient Oncology floor later next week (or somewhere around then). Once his counts are high enough..they want to put him right back in for the next high dose chemo round. Bummer..but probably better when you look at the bigger picture.

Speaking of Dan's counts..they're getting higher..but very slowly. We've had to go into the clinic every day to get blood draws..and his numbers are still looking pretty low. Unfortunately..this means that we probably won't be able to make it home this weekend..which totally stinks. We were both looking forward to it..sooo..hopefully if not over the weekend, perhaps early next week? We're hoping to leave for Boston from home..yes..that would be nice.

Anyway..that's all I've really got. We spent a majority of today inside..it's been relatively boring. As always, feel free to call with any questions or whatever, and also..we've always got an open invitation to the booming metropolis of Burlington, VT if anyone gets a whim to take a drive.

Love and miss you all!

-Ashley

Some new information..

2008-10-14T13:50:00.001-04:00

Okay, so after meeting with Dan's doctors today (and getting yet another platelet transfusion)..it has been determined that Dan will probably be going back into the hospital for another high dose regimine at the end of next week (after we get back from Dana Farber). It will most likely be another 5-6 day stay..and an uncomfortable week following. We were also told that we might be able to go home for the weekend..until we head to Boston..and then have to head back here right after..but we're not entirely sure if that will happen. It depends on whether or not his counts raise like they're supposed to. Anyway..that's it for right now :o)

-Ashley

Another Update..please stop me if I'm boring you :o)

2008-10-13T21:53:00.002-04:00

Okayy..so I tried to give everyone (aka..myself) a break for a few days from at least the writing about everything that goes on in a day in the life of..but alas..I've returned. So here's a little of what's been happening in our lives recently..

Dan was back in the clinic on Friday..just some blood work, nothing too exciting. Labs showed that his counts were starting to drop (an unfortunate effect of the chemo, but also an indication that it's at least having an effect on him), so we were required to head to Fanny Allen..the other, less pleasant hospital associated with the Burlington hospital network. I guess it was some sort of catholic hospital back in the day..kind of has an older/creepy feel to it (nothing like the warm and inviting Fletcher Allen)..and on the weekend it's definitely worse. It seemed like nobody really had their acts together there..and we had to wait around for people to organize themselves..that was the same story for both Saturday and Sunday. After all was said and done, it was determined that Dan was not going to need a platelet transfusion during the weekend. Once his platelet count fell to a certain number, the doctors wanted to give him platelets to help boost that a bit..and had him stop taking his blood thinning medication..which I suppose makes perfect sense. If he gets a paper cut, I'd rather he didn't bleed to death from it..okay..I'm being dramatic..but you get my drift.

Friday afternoon was nice, as we got a visit from Carol, Becky, Steve and Rick..which was both fun and entertaining for all of us. We're not very good at entertaining these days..soooo..it was a nice change of pace for us. We even got Dan to come to lunch with us! We both had a lot of fun..even though I wasn't smart enough to bring a jacket..and it got pretty chilly in the shade. We finished Friday off by getting into bed around 5:00 or so and watched exhilarating shows..such as Jeopardy and Wheel of Fortune (are we already married?! because I'm pretty sure it was one of the more comfortable nights I've had in a while).

Oh..PS..I'm not sure that everyone who reads the blog (I'm not even sure that many people read the blog anymore..I STILL UPDATE THIS..just takes me a couple of days)..but Dan and I are engaged. Okay..it's officially out. It's been out for a little while now, but I've realized that not everyone has gotten the "memo"..sooo..there it is. No wedding date set or anything..just focusing on having Dan alive and well so we can actually make that happen. I'm sure as that situation progresses (and it won't be for a while), I'll let you know.

The weekend went smoothly. Sean and my friend Katie came up Saturday afternoon. It turned out that Sean wasn't feeling well so he went home..Katie spent the night and her fiance came to visit the next day and also to give her a ride home. We're lucky they're so easy going because we're not all that good at entertaining when Dan's not feeling great..and we spent Sunday in the creepy hospital..then hanging out at the Hope Lodge watching Jurassic Park..watch out, we're hardcore. Went to bed relatively early to prepare for another early morning.

This morning we went back to the clinic (Fletcher Allen..happy hospital)..and Dan got more labs drawn. His platelets were at 10..so he had to get a platelet transfusion today. Which was a total bummer for him. Well..most likely not..because I heard that he slept through most of it..about a 4 hour procedure..between that and the fluids his doctor had ordered. I got somewhat lucky today..and my grandmother came for a visit. She and my aunt visited with Dan and I for a while in the hospital..and then after getting reassured that it was okay..I took them out for a little bit to go sightseeing. We ended up making the 30 min trek to Waterbury, and got to see the stimulation process of ice cream making at the Ben and Jerry's factory. It was pretty neat..we had to wait longer to get into the tour than it actually lasted..but it was interesting nevertheless. And if it weren't for the fact that we're pretty well fed at the hope lodge (and the line was a half hour long)..I was pretty compelled to get the VerMonster sundae. Okay..not really..but it's an ice cream sundae that served in a bucket. How gross is that?! Maybe it's one of those "free if you don't throw up" scenarios. Either way..we passed..just thought I'd share with everyone.

Hmm..other than that..not too much going on. We found out that they're opening a brand new hope lodge in Boston..which is pretty neat because it should be opening at the end of the month! We probably won't be officially heading to Boston until mid November (at least)..so it'll be pretty good timing for us..even if they're late in opening it. Ps..this whole Hope Lodge experience has been insane. We're just blown away at the fact that we've taken up residence here for 2.5 months..have been fed numerous meals, do our laundry and a number of other luxuries here..and it's completely free. We're extremely lucky to be able to stay here while Dan's going through this..it has definitely made it easier on both of us.

Oh, before I stop making you read all of this (oh, will I ever REALLY stop though?) Dan's "plan" will be as follows..this week will be an endless array of labs and platelet transfusions, and white blood cell boosting shots..and his doctors say he should be at a safe white blood cell level by the weekend. Monday and Tuesday of next week will be around Burlington (I assume they still won't feel comfortable with Dan being at home..we'll definitely check though)..then Boston on Wednesday the 22nd. Again..we'll be meeting with the transplant team to ask our questions..soo..if anyone has any questions THEY would like answered..please let me know so I can get some information to you. The next week or so is kind of unknown to us at this point in time. I know that they'd like to do a CT scan sometime just before the end of the month. After that..Dan will most likely be heading back into the hospital for another high dose ARA-C regimine. Fun..huh? So...after he gets that, it will most likely be the same process we're going through now..aka..Dan feeling miserable all the time..with the added bonus of BONE PAIN..which is caused by the white blood cell stimulator. Poor guy. I just try to keep him entertained, and happy. It takes a lot out of both of us..so if you're up for a weekend visit AND YOU'RE NOT SICK..AGAIN..THIS IS EXTREMELY IMPORTANT. DAN HAS NOOOOO IMMUNE SYSTEM, AND CANNOT FIGHT INFECTIONS. WHAT MAY BE A COMMON COLD FOR YOU CAN TURN INTO PNEUMONIA FOR HIM. Please Please Please stay home if you are sick. Wait until you're better..we definitely understand. We're lucky he's not in the hospital now as it is..apparently when someone's counts are as low as Dan's, most hospitals would keep patients in the hospital..but Burlington has the Hope Lodge which is right next to the hospital..so they allow people to stay there if it's possible. So again..(sorry, but this is very important) please stay home if you are either sick or have been exposed to someone who is sick. There will be plenty of time to visit when you're better, and helps his prognosis when he's not contracting new infections.

Anyway..that's all I really have for now. As always..feel free to call us with any questions, comments, concerns..or just to chat. I'm open to all of these <33

We love and miss you all.

-Ashley

A little of what's been happening..

2008-10-09T23:43:00.002-04:00

So Dan was discharged from the hospital on Tuesday evening. It took FOREVER for them to finally put the orders through to release him. We met with his doctor yesterday morning..she wanted to make sure she touched base with us before she left for the weekend..she said that this weekend will be one of the worst that Dan has experienced since he started his chemo treatments. Most likely because the dose he got was about 5-6x higher than what he's been getting. He got some labs drawn this morning and his white blood cell count was at .037 . From what I gather.."normal" cell count numbers are around 2.25-2.5 . So, as I'm sure most of you can imagine..this is a pretty critical time to keep Dan in a relatively controlled environment..so I don't believe that we'll be making the trek home this weekend. Also, his doctor said that those are very dangerous levels to be at, and want him to stay close to the hospital.

Tomorrow morning, they will be injecting Dan with something that will help his blood cell counts go up. I believe that in the next couple of days they will be doing a few more tests and most likely a ct scan to measure where the tumor is at. In the near future they will probably want to do another PET scan as well. I guess I have been unclear, but for the time being, all of the treatment that Dan is receiving is in Burlington. We went to Boston for a consult, and will be returning either next week (Oct 15) or the following week (Oct 22) to meet with the transplant team. After we meet with them, we will probably be coming back to Burlington until they are ready to start with the transplants, or until he needs more tests or meetings with Boston doctors. We probably won't be heading to Boston to meet with the transplant team until Oct 22 or so because his doctors feel that Dan won't be in the best condition to be travelling.

Either way..I think that both of us are ready for this to be over, but are both well aware that we're still very much fighting an uphill battle. We appreciate everything everyone has been doing to help us. We're overwhelmed at the kindness we've been shown, from everywhere..even places we least expected it to come from. We can't thank you all enough..this is obviously a tough situation that all of you have helped to alleviate some..each in your own way. We couldn't do this without you!

Anyway..that's all I have for now (I think)..if there are questions..please don't hesitate to ask!

We love and miss you all!
-Ashley

Updating..Again

2008-10-06T19:20:00.002-04:00

Okay..so the week hasn't shortened at all since my last post. Dan's been having a rough time in the hospital for the past couple of days. Currently, the only reason he's still in there is because he's being treated for severe dehydration. He's been unable to keep anything down, and has thrown up multiple times in the past couple of days. Typically, the thought of food makes him nauseous..and actually eating food is a war with his stomach. It's pretty much the opposite of fun for both of us (most likely moreso for him, than for me). He's miraculously managed to keep the last thing he ate down..which was surprisingly a grilled cheese sandwich..which I can't imagine would make anyone's stomach feel good..but he's done okay so far. They've tried to give him anti-nausea medications that make him drowsy so he can sleep through his discomfort. His feet aren't doing any better either. They pretty much just burn all the time now..and we're not sure it'll ever go away. We'll keep praying that it does.

Anyway..I'm still trying to update as often as possible, but I can't log onto the blog while we're at the hospital..the phone won't let me get as far as logging on for some reason. Soo..I may try to leave a few comments here and there. But..if anyone has any questions..feel free to call or e-mail or leave comments here. I typically check my e-mail and the blog using the phone a few times a day..so I'm pretty reachable.

PS..thanks to Kelley and Aunt Ellen for stopping up today, and Katie and Sean this weekend. It helps not only Dan..but me tons to have extra people around. As most of you know I've been on the verge of going crazy this past week or so..thanks to everyone for keeping me sane. I'll let you all know when we're able to get home again.

Love and miss you all!!
Ashley

A Really Long Week...

2008-10-03T17:49:00.003-04:00

Hi everyone..

So, I've taken a quick break from the hospital to collect myself, and I figured that while I've broken out, I'd update everyone on what's been going on in the hospital. Dan started on his high dose ARA-C regimine yesterday..it's been pretty rough on him. He's still having severe problems with his feet..he can barely lay down without feeling uncomfortable. He's also been running a fever for almost 36 hours now. It dropped down a bit last night..but it's back to being high again. They've been trying to alleviate this with lots of fluids and Tylenol..but it's not helping much thus far. His blood cultures from yesterday should be back by tomorrow, and hopefully we'll find out if there's an infection going on (which would explain both his high fever and his rapid heart rate).

He was throwing up this morning, and hasn't been able to get decent sleep (he was snoring when I left the hospital, so hopefully he'll be able to get a couple of solid hours in). It seemed like every time he fell asleep last night, someone came in to check something (his temperature, vitals, blood sugar, etc)..sooo..that didn't help the sleeping situation much.

As far as side effects go..most of them are the same..fatigue, nausea, vomitting, etc..neuropathy is also a side effect..very rare..but it's possible. We're hoping that he doesn't get that one..because I'm just not sure he'll be able to take much more. They've tried a number of different medications and a few menthol based creams..but nothing has seemed to work yet. I'm noticing that it's getting harder for me to keep his spirits up. I know it's a combination of everything..but quite frankly..it frightens me a bit. If ANYONE is available to stop by for a visit this weekend, I encourage that you do..it would help me out a lot, and I think that seeing more familiar faces would help him too. When people come to see him, he thinks less about everything that's going on. Since he's been feeling so crappy..he's been thinking about things a lot more..and I am having a hard time keeping him at a constant happy.

Also..if anyone has a twin sized memory foam mattress topper..and is willing to part with it for awhile..I was wondering if we could perhaps borrow it. As I'm sure most of you know, hospital beds are extremely uncomfortable..and even though this will be a relatively short stay..he'll be in the hospital in Boston for about 4-6 weeks. That's a long time to go (again)..in a very uncomfortable sleeping situation. Figured I'd ask.

Anyway..that's all I have for now..again, if you're able to donate some time to visit this weekend (or early next week), it would really mean a lot to both of us. Feel free to call with any questions.

Love and miss you all.
Ashley

Quick Update

2008-10-01T22:14:00.003-04:00

I just wanted to let everyone know that Dan's doctor called us this afternoon shortly after I posted. They will be going ahead with the ARA-C treatment starting first thing tomorrow morning. Unfortunately this means that Dan will have to go back into the hospital for the next 5 days or so. The doctors in Boston have made the ultimate decision on proceeding with this treatment, and I'm sure they have Dan's best interest in mind. We're hoping that this drug proves to be as effective as it seemed to be during Regimine 2.

Dan has been pretty groggy all night, most likely due to the drugs they gave him while he was getting all of his tests and whatnot done today. His feet are in much more pain, so his doctors said that they will work on something for him for tomorrow (I guess there are certain oils containing high concentrations of menthol that work well)..if we can manage the pain for tonight. He's hanging in there, and I for one am so proud of how well he's been taking everything that has been thrown at him. Other than that..we're just trying to stay positive about everything. It obviously gets pretty tough when the situation has just turned into this nightmarish rollercoaster. We definitely couldn't do this without all of you behind us. I'll hopefully be able to update tomorrow once I know a little bit more about the next course of action. As always..please feel free to ask any questions you may have.

Love and miss you all.

Ashley

What's going on..

2008-10-01T16:21:00.002-04:00

Hi everyone..

Sooo..I'll start off with letting everyone know that Boston went pretty well. The doctor Dan will be working with is great, and seems to be incredibly knowledgeable about everything going on with Dan. He said that he would like to proceed with the bone marrow transplant, but will not do so until Dan's tumor is in remission. That being said, we found out today that his tumor has grown again..how much does that suck? We also found out that there is some fluid in Dan's pericardium (the membrane surrounding the heart cavity). They originally thought that the tumor might have infiltrated into his heart cavity, which was causing the fluid buildup..his EKG showed that this was not the case. They said that they would be monitoring Dan to see when they'll resume chemo treatments. They have decided to stop the neuralibine treatment, as it has proven to be ineffective in Dan's case. His doctors said that they will most likely go back and do Regimine 2 again..and see where that takes us.

From there, they might go ahead and do the high dose ARA-C treatment, which will require Dan to be hospitalized while that treatment is going on.

Dana farber has also requested that we go back there to meet with the transplant team..so we can get acquainted with them before they even begin the transplant process..they will be able to answer any questions we may have..that will probably be taking place sometime next week..so if anyone has any questions, please let me know what they are so I can get them answered for you!

Anyway, we're back at the Hope Lodge now..Sean will be joining us tonight to bring up our stuff (we didn't come prepared..grrrrrr..so he's being super fantastic and grabbing that for us and heading up here to hang out with us)..we'll be going back to the hospital tomorrow to meet with his doctors again, see how Dan's heart activity is doing, and most likely make a plan to go from there. Once I know more, I will keep everyone posted.

Thank you all for the continued love and support <33
Feel free to call at any time with questions!

Ashley & Dan

Forty-Six

2008-09-25T23:19:00.002-04:00

That's right. We got confirmation that Dan has 46 potential bone marrow donors! How freaking great is that?! I guess they typically find an average of 4-7 potential donors, but Dan has obviously exceeded that! That's awesome, but now we're not actually sure if they're going to go ahead and do the transplants due to the fact that his tumor responded so well to his last chemo regimine (unfortunately the regimine that included all of the spinal taps..ick). We'll also be getting Dan some crutches tomorrow due to the fact that it has gotten extremely painful for him to walk. We're now hoping that this nerve damage isn't permanant..but after reading about it..there's still a pretty large chance that it will be. Doctors can prescribe medications to make the pain TOLERABLE, but it may never actually go away. Let's hope that it does so he doesn't have to live out the rest of his life in agony. Poor guy can't seem to catch a break! But, we'll definitely take the fact that 46 potential donors are out there! Wooohoo!

I also wanted to let everyone know that I don't think that Dan or I will be able to participate in the walk tomorrow night. Dan's feet are obviously killing him, and I came down with some illness a couple of days ago, and I'm still kind of recovering from that. According to tomorrow's weather forecast, it's supposed to be cold and rainy..and I'd rather not chance getting sick again. Dan's counts were thankfully up, and I could get away with staying at home (but quarantined in my bedroom)..but I don't want to get another illness to potentially pass on to him. I want to thank everyone walking on Dan's behalf. Although we can't be there, know that we're so thankful for those of you walking for our cause. You're all the greatest!

NEWS!

2008-09-23T16:54:00.002-04:00

Hi everyone! So, we went to Burlington this morning for an appointment with Dan's doctor, and we've gotten some news! Dan got an XRay taken last Monday, and we finally got the results of that..the tumor has "gotten significantly smaller"!!! They didn't have exact dimensions, but just hearing that it's smaller is good enough for me!! YAY!!

We're back at home now, and we won't have to go back to Vermont until next Wednesday. Dan will be heading to Glens Falls this Thursday to get some labs drawn there (His doctor thought that it would make more sense to have us at home, and only go to VT when we need to). Then Boston on Monday..we're only going for the day, as it's just an initial exam..so we probably won't need to stay overnight. Hopefully we'll find out tomorrow about the bone marrow matches. JoAnne, the transplant coordinator @ Fletcher Allen said she'd be giving us a call tomorrow. We're actually not sure at this point if they'll move forward with the bone marrow transplants at this time..we'll figure that out in Boston on Monday, but because the tumor responded so well to the last chemo regimine, they might want to go back and do that one again. Not entirely sure as to what the plan is, but I'll definitely keep everyone posted.

We love you all! Thank you for your continued love and support!

-Ashley

Boston

2008-09-21T09:41:00.001-04:00

Hi everyone..so we got a phone call on Friday about going to Boston for Dan's initial exam at Dana-Farber. We'll be heading there on the 29th for an appointment, and this coming Tuesday we'll be coming up with a "plan" for the next couple of weeks in Vermont. We'll have to see about staying home longer..the doctors didn't seem to have any objections to that, so as long as he doesn't need to be there for labs or treatment..we'll probably be spending more time at home for now.

Other than that, Dan's been pretty good. He's been in good spirits, which is always a plus. The most recent issue he's had has been the intensity of the numbness in his feet. It makes it difficult for him to walk, stand, etc. Hopefully that will go away once this next treatment is over with.

Anyway, just wanted to update quickly. Feel free to contact me with any questions.

-Ashley

Update: New Chemo Drug

2008-09-17T17:01:00.003-04:00

So Dan has gotten two treatments of the new drug this week. I had originally thought that it would be 1 day of treatment and then 3 weeks of recover time, however..he will be getting 3 separate treatments followed by 3 weeks of recovery time. His third treatment is on Friday morning, and then we have to go back in on Tuesday to meet with his doctor (Dr Grant), and get more labs drawn. On Friday we're going to discuss coming home for a semi-extended period of time if possible. We'd probably come back on Sunday afternoon, and then come home on Tuesday (if possible). We're hoping that they'll be okay with letting us do that, so we can get some more stuff done at home..and get away from all of the craziness of Burlington for a little bit. Again, it's great here..but it's not home.

The new drug doesn't have many side effects, but the ones it does have are all neurological..which is why we're concerned that they won't be too keen on letting us go. These side effects are rare, but can be severe..so it's not a chance that we want to take if they're not comfortable with it too.

Other than that, not too much going on..for those of you who are unaware..we're coming home for the weekend. Mostly so I can celebrate being 21 with my family and friends (selfish, I know, but I've been waiting for this forEVER..haha). If you're around and are feeling up to it, feel free to join us on Saturday night in Saratoga. Anyway, nothing too exciting here, Dan's been feeling better, even well enough to go for a walk yesterday and today! Probably about a mile and a half..but it was definitely nice to get some fresh air WITH him! Anyway, feel free to call with any questions!

Thank you all for the continued love and support. We definitely wouldn't be able to make it through this if we didn't have all of you behind us throughout this whole ordeal. We love you all!

Ashley & Dan

New Chemo Treatment

2008-09-12T19:43:00.001-04:00

Hi Everyone!

We are home for the weekend! Yay! Also, we heard from the Dr today that they want Dan to start his new treatment first thing Monday morning. They will have to draw up more labs to make sure that his white blood cell counts are back up before they start the new chemo. They cannot administer another drug without his counts being at a "normal" level. So, provided his counts look good, he'll be getting a chest Xray and then starting treatment. Fun times all around. Anyway, we are home..and not doing too much, so if anyone wants to stop by (and you're not sick)..please feel free to do so!

-Ashley

2008-09-11T07:06:00.002-04:00

Hi! I would like to invite everyone to join me in The Leukemia & Lymphoma Society's Light The Night Walk on September 26. It is taking place at Crossings Park of Colonie. Registation begins at 5:30 and the 2 mile walk is at dusk. I have set up a team for Danny's family and freinds to join in honor of him. The team name is Team Canary. To register go to www.lightthenight.org. You can find our team under Team Canary or Carol Bozzo. Please call or e-mail me if you have any questions (885-2747or cbozzo@nycap.rr.com). Wear your Canary T-shirt and show your support to Danny and The Leukemia and Lymphoma Society!!! If you can not join us that night and would like to make a donation both Sarah and Joey have online donation pages they are:
www.active.com/donate/ltnAlbany/2433_sarahb4 or www.active.com/donate/ltnAlbany/2433_joeyb7

Danny and Ashley- We are thinking about you!!!

Update..again

2008-09-10T18:40:00.003-04:00

Soo..it's been a number of days since I last posted..but I didn't want you all to think that I had forgotten about you! It's just that there's nothing extremely significant going on..which I suppose is a very significant thing. Dan has been doing GREAT! He's been up and about recently..which has been incredible..it's definitely a nice change to doing nothing! We went home for the weekend, and had a great time! It's really nice when we can actually go home and relax and enjoy ourselves for a little bit. Don't get me wrong, Burlington is great, but it's not home. He went in yesterday to get some more labs drawn, and his white blood counts are even lower, but he hasn't really exhibited any signs that this has negatively effected him. So, in the realm of this is a really crappy situation, no news is good news. We've just been hanging out for the most part..and today we didn't do anything..which was a pretty nice change of pace. He's been mostly keeping himself busy with that new game Spore..which was created by the same people who created The Sims..a lot of fun, and extremely time consuming..haha. But, other than that, things have been going well. He goes back in tomorrow for another blood draw..and I suppose we'll kind of go from there. I'm not entirely sure as to when he'll be starting his next chemo, but my best guess is probably sometime early next week. I think that as long as his blood counts are in a decent range, we'll try to come home again this weekend. I'll keep everyone posted when we learn more about what's going on.

We love you all!

Ashley & Dan

A HUGE thank you to Ashley

2008-09-04T21:09:00.003-04:00

Ash...
I just wanted to thank you for all your hard work and devotion to Danny. You have handled all of this with incredible grace. Dan is very lucky to have you in his life as are we, the rest of his family.
I know there have been many exhausting days where you have taken the time to keep us all in the loop and updated on what is going on.
Thank you so much for that!
You are an amazing girl and have proved yourself time and again with each new curve ball that has been thrown your way!
I just wanted you to know how much we appreciate all you have done for Danny and for all of us who can not be there!
Kel

Answers!

2008-09-04T21:06:00.002-04:00

FINANCES

Okay, so it seems that one of the biggest questions that is being asked is regarding the financial situation at Fletcher Allen. Fletcher Allen is NOT in Dan's health insurance network, true..and we're paying a lot more for treatment here than we would if we were at Dana-Farber..but Dan has 2 treatments left here. One in a week, and then another one 4 weeks from now. Not that we're not paying more than we would at Dana-Farber..but he made his decision based on a number of factors:

-He really likes his doctors. They have been absolutely amazing throughout this whole thing..and Dan is on the same exact regimine that he would be on at Dana-Farber. His doctor has given us extremely prompt answers, and have worked extremely closely with us since the day we got here. He left rounds on the first day to start work on Dan's case..and they have formed a close bond. Dan feels comfortable with him, and said that he would like to stay under his care as long as possible. He also no longer gets his treatments in the big "treatment room" (where about 24 people at a time can receive treatment). They allow him to use a separate procedure room (as long as nobody else needs it) so he'll be more comfortable and have privacy.

-The money situation is pretty much off our radar at this point in time. We're probably inching toward a 1,000,00 bill..so we're never going to be able to pay all of it off at this point in time. Due to the fact that even at Dana-Farber..it wouldn't decrease the amount we would have to pay by THAT much, and Dan said that he's going to look into other options as far as that situation goes. Also, Dana-Farber is a great hospital where they make a lot of medical breakthroughs, but we definitely wouldn't get the amount of personal care there that we do here.

-Lodging. We are staying at the Hope Lodge right now (obviously)..it's extremely comfortable for Dan to hang out in on the days that he feels like garbage. I have spoken with the manager of the Worcester Hope Lodge (Mass), and she informed me that their lodge is much smaller, and they don't have the same ammenities available to the patients there. It is also about an hour away from the hospital (although they do provide transportation). He is starting a new drug that isn't used all that often yet..but proven to be a miracle drug in many cases. I would, however, feel much better knowing the hospital is literally a hop skip and a jump from where we are staying in case something goes wrong with said drug. Not saying it will, but these drugs can have some pretty adverse effects, and I think that we would both prefer that as long as we can..staying close to the hospital once this new drug starts might be in our best interest. They give it every 21 days because of how much of an incredible toll it can take on the body..it needs time to recouperate.

I'm not sure if that answered the financial side of the questions you all had, but I gave it a shot..let me know if there's more. Also, please be advised that Dan made all of the executive decisions regarding his care. I gave him my own opinions on the decisions he made, but ultimately we decided that they were decisions that he needed to make based on how comfortable he would be..and as far as the situation goes..the financial difference is the only reason to go to Dana-Farber right now..and Dan said that it wasn't necessarily a good enough reason for him to go right away.

BONE MARROW.

I mentioned in an earlier post that Sean (little) would be tested to see if he would be a match for Bone Marrow transplants. Typically, they do go to siblings first when it comes to these, however..it's when the siblings have the same parents. Dan and little Sean only have one common parent, so according to the lady in charge of transplants here, she said the chances of them being a match are very slim..but if there's no match in the donor bank..insurance would still consider Sean a close enough potential to cover him to be tested. We have been informed that they RARELY have trouble finding matches for young caucasian males. They said that there are a couple million options in this bank, and usually it's when they are of another race, they have more difficulty. We should know by early next week how many matches there are. As far as one being "better" than the other..there's no difference really. There's just more potential for a match when two siblings have the same parents. As far as family goes..I guess matches from the family fall off pretty quickly, they don't typically test parents or grandparents..and aunts/uncles/cousins/etc have as much of a chance of being matches as a random person on the street (unfortunately). If need be, I have already spoken with Kristine from Best Buy about maybe holding a drive. This is how we can bypass the whole insurance issue, and the costs associated with testing a large number of people. She was extremely willing to help..but that's a big responsibility to take on if there are already matches out there.

CHEMO DRUG.

As far as I know, there is only one drug in this next regimen. I believe it's called Nelaribine. As far as side effects go, I'm sure they're all pretty much the same, low blood counts, fatigue, nausea/vomiting..etc. I think the effects of this just last longer than many of the others. He only gets this twice..but has much more time in between to recover from it.

UPDATE FROM TODAY.

Dan and I got out today! We took a ferry across the lake and hung out with Kevin and Julie Tierney (Sean's brother/Sister in-law). We just spent the afternoon taking it easy..they had a campsite over there, and we had lunch and just kind of hung out..we both had a lot of fun, and the ferry ride was beautiful at dusk! Don't worry, we consulted the doctor's before we went and they said that as long as we were taking the proper hygeine precautions, Dan should be fine. They will be there for the remainder of the weekend, and Dan said that he'd like to stop up again as long as he's feeling up to it.

Dan also mentioned that he would like to go home for the weekend. Potentially heading up to AuSable to hang out with Kev/Julie/Tierney Clan on Saturday..but he would really like to get home for a little bit. I think he's getting homesick, and pretty jealous that he hasn't gotten to try out the new couch (which is extremely comfortable, by the way..Kel posted some pictures on facebook!) Other than that, we have to go in tomorrow morning to meet with his doctor and get some more labs drawn, and ask about the chances of being able to get home for a few days, potentially longer if there's nothing planned for early in the week. I think that all really depends on his white blood cell counts and how comfortable the doctor feels with letting him stray that far from the hospital. We'll see..and I'll keep everyone posted.

I hope that answered all of the questions that you all had. I hope a lot of it made sense..I have another window opened with all of the questions you've asked and I'm trying to answer them based on what they say..haha. Anyway, as always..feel free to ask more questions..when we're not doing hospital stuff, and getting Dan out..I really enjoy doing this..so..always ask!

Also, Sean mentioned having Dan write some of his own posts. I will definitely run that by him, but Dan absolutely hates stuff like this, he thinks it's great that we use it, but he doesn't do much blogging in his spare time..ever..haha. I'm sure he wouldn't mind just typing up a quick something about how his days are and whatnot..but as far as his treatment goes..I sometimes question whether he listens to the doctors when they talk..because if I'm not there, and they come in..he rarely remembers the things they talk to him about. But I will definitely make sure he tries to check in once in a while. Also, when it comes to getting ahold of Dan..I'd honestly go with either Facebook or Myspace. Sadly, he checks those more than he checks his e-mail, or his blog. Or his voicemail for that matter. He had SEVEN new messages on his phone when I checked it this morning..which is typically why I will answer his phone when people call..because he rarely "feels like" talking..maybe it's because I talk so much when we're around..hmmm..maybe he's just lazy..hmmmmmmm. Either way..I'll definitely let him know that people would like to hear from him. :o)

Anyway..other than that..that's what I've got..sorry this thing is absurdly long (sorry about the lack of short answers Kel, I broke them up for you) Feel free to ask more questions or call whenever. I'll also let everyone know if we're coming back during the weekend. Thank you all for the continued love and support! We love you all!

-Ashley

Update

2008-09-03T23:11:00.002-04:00

Hi Everyone!

So, I'm checking in to update everyone on the latest info with Dan. First of all, we'll be staying in Burlington through his next treatment cycle. In about 7 days he'll get his treatment, and then 21 days later he'll get his second one. His doctors think that after the second treatment, they'll send us to Boston while he "recovers" from the treatment. Then they'll proceed to the next step in the treatment.

They drew some blood today, and they are going to be typing his bone marrow with it. The woman we spoke with said she'll be running his numbers through the national donor center and should be able to let us know in a few days about how many matches we can find for him. They said they rarely have trouble locating matches for caucasian males..so hopefully that'll be the same in our case. If not..we'll probably look into holding a drive to see if we can find someone in our area who will be a match for him. We'll have to wait and see until we can get some information from the donor center though.

Dan got what we hope will be his FINAL spinal tap today. It went pretty well with the exception of the fact that right toward the end, he started getting sick. He said he felt much better afterwards..but I'm sure throwing up with a needle in your spine can't be overly comfortable. Other than that, we've just been hanging out. I actually fell asleep earlier, and he was up and hanging out. Weird. His back is kind of sore and he has a headache..but unfortunately that's to be expected with the Methotrexate that he's on. Hopefully the effects won't last as long this time, because for the past couple of days, he's been doing great.

Anyway..that's all I have for now. Feel free to call or e-mail or leave messages with any other questions.

We love you all!

-Ashley

Answers..well some

2008-09-02T17:06:00.002-04:00

Hi Everyone..

Soo..to answer all of Aunt Ellen's questions..

-As far as "old" chemo goes..Dan is done with those. He is on a different chemo regimine, and will be for at least 42 days (as far as I know). The doctors at Dana-Farber are the ones who have decided which chemos he will be taking, so they're kind of in the driver's seat at this point in time. As far as going there, we should know more tomorrow..his doctor didn't have a chance to get ahold of them over the long weekend, but they are in our health insurance network, so he'd be getting the same treatment there but it would cost us a lot less! Therefore..we should be transferring to Boston in the near future. Just not entirely sure as to when.

-We're still staying at the Hope Lodge in Burlington. There is a Hope Lodge near Dana-Farber..and by near I mean about an hour away. I spoke with the manager of that one, and she said to contact her when we knew when we'd be venturing into the city. They provide transportation to and from the hospital..but we're checking to see if there's something else a little bit closer..mostly for my own peace of mind.

-They will be checking out potential donors after we get to Boston. They don't really do the transplants @ Fletcher Allen (his doctor actually said he might be going out there when they do Dan's transplants so he can learn about how to do them..which would be awesome to have another familiar face there!) Dan's marrow needs to be evaluated first, but it needs to get done at Dana-Farber..soo..hopefully we'll know more about when we'll be transferring soon.

-When Dan is up for eating, there is a kitchen at the Hope Lodge we're in..and I'm pretty sure there's one in the Hope Lodge in Boston as well. It's huge, and there are refrigerators/freezers that we can keep food in..each room has a designated spot in one of the 4 large refrigerators. Also, each room has their own cupboard for dry food. There's also a refrigerator and a cupboard for "house" use. Any food in either of these is available for anyone to eat. There's always tons of stuff to eat, because so much is donated. Also, 2-3 nights a weeks different groups of people come in to make dinner. Last week the nurses from the Inpatient Oncology floor were in, and the following night was the Pathology department. Different people come in at different times, and that's always nice..because I'm not all that fond of cooking :o)

-I've been getting out some..getting some errands ran and whatnot..and yesterday we all went downtown and had dinner. It's really nice, because it's the first time in a while that Dan has been feeling well enough to actually go downtown..and it was the perfect day to do it.

Other than that..I came back home today..just to get a few things taken care of at the apartment. I'll be staying until tomorrow and then going back first thing in the morning. Dan has a chemo treatment tomorrow and we'll also be meeting with his doctor..so I'll keep everyone posted on what we find out regarding his treatment and where we'll be in the next week or so. If anyone has any other questions, please feel free to call, or leave messages here..or e-mail me: clute03@hotmail.com . I try to update as much as possible, but sometimes it gets hectic and I neglect the blog for a little bit. I'll try not to do that, but feel free to call and remind me if you find I haven't been keeping you informed!

Thank you all for your continued love and support.
We love you!

-Ashley

ATTENTION!

2008-09-01T19:18:00.001-04:00

I just wanted to let everyone know that Kevin will be placing the last T-Shirt order on September 8th. If anyone wants a shirt, please let me know before then so Kevin can put them in. Feel free to contact me with any questions. I'll update with more on Dan later.

-Ashley

Satuday...

2008-08-30T21:11:00.005-04:00

Hello everyone...just wanted to check in with a little update. Not much has gone on today. Dan has been pretty low key, laying around and sleeping most of the day. We moved rooms at the Hope Lodge from room 202 to room 206 which is a stem cell room...also nicknamed the neutropenic room. It is almost the exact same as the other rooms except it has hardwood floors and an added little kitchenette with microwave, mini fridge, 2 burner stove top, and sink. This room also seems to have a bit better air circulation throughout the rooms which is nice.

Besides that, some good news is his temperature and blood sugar has thankfully been normal all day. His appetite hasn't been great, but I have gotten him to eat some cheerios, few orange slices, 1/4 turkey sandwich, and a couple freshly baked chocolate chip cookies! Tomorrow Dan mentioned trying to take a little walk outside if it's nice out again.

Well that's it for now...have a good night everyone!

Much love,
Sean

Quick Update

2008-08-28T21:52:00.002-04:00

Just wanted to let everyone know that Dan was re-admitted into the hospital this evening. They are going to keep him at least overnight to make sure that his fever doesn't come back. Due to some swelling on his upper neck, they will be testing him for mumps at some point in the near future. Tomorrow we'll hear more from the doctors and Dr Whittman, his main doctor is looking into sending us to Boston sooner than expected due to the fact that Dana-Farber is in our insurance network, whereas Fletcher Allen is not.

Other than that, just grabbing some of Dan's meds and heading back to the hospital most likely for the night. I'll let everyone know if anything else happens during the night..let's hope it's a quiet one though.

We love you all!

-Ashley

More Hurdles..

2008-08-28T10:27:00.002-04:00

Hi all,

I just wanted to fill everyone in on the latest from Burlington. It has been a particularly challenging past couple of days here..and we're doing the best we can to get past the words and focus on getting Dan better. I sent out a text message to many because his doctors saw what looked like it could potentially be another mass on the right side of his left lung. We found out after we got called in for an emergency CT scan yesterday that it is not a new mass, but it is the old mass, which has grown about 20% since the last time they checked it. It's almost back to the size it was when we came in. From what the doctors have told us, this is bad (obviously). This means that Dan's body has not responded to the Chemo, and they will be starting on some new drug within the next few days. The fact that he didn't respond to initial treatment also damages his prognosis. This new drug, apparently has shown to be a "miracle drug" in some clinical studies.

Dan will also need bone marrow transplants. They said that his best shot would be getting transplants, which would essentially give him someone else's immune system. There is also talks in process about the possibility of doing a pancreatic transplant at the same time. With a new immune system, and a new pancreas..Dan might not have diabetes anymore! How insane would that be?! We're trying not to get our hopes up about that too much, as it's just a question that they will be inquiring about. Unfortunately for us, that means that we're going to be heading to Boston to Dana-Farber. It will be after 2 consecutive 21-day Chemo cycles here, and then we'll be transferred. We might be able to go home briefly in between, but we won't be back for good for at least a few months. It's definitely unfortunate, but it's necessary.

This morning, around 3am..I took Dan to the ER because he had a fever of 101, and he started vomitting. They did a CT scan of his brain, and a chest Xray, as well as a number of blood/urine tests. As far as they could tell..there's nothing out of the ordinary that caused the fever..but it's something they will continue to monitor. We believe that he could have been exposed to something at the dinner the other night. I'm kind of kicking myself for not having him wear a mask..because even if someone isn't sick..if they've been exposed to something (which they have built up an immunity to)..they could still be carrying it and pass it on. We can't really stress the importance of letting us know if you're sick and you want to visit. It could be extremely detremental to Dan's health to get a "common cold". I know it was more my responsibility to make sure he wasn't exposed, but please let us know so we can take the reight precautions. I just wanted to reiterate so something like this doesn't happen again.

Anyway..that's all I really have for now, I'll keep everyone posted as I know more. We have an appointment with Dan's doctor at 4pm..so hopefully we'll get some information as to where to go from here. Something might change due to the ER visit this morning..but we'll see.

Thank you all for your continued love and support. We love you all!

-Ashley & Dan

This week so far...

2008-08-27T08:57:00.002-04:00

Hi everyone,

We're back in Burlington, and Dan got a round of Chemo yesterday morning. It was 3 different types..so it wasn't much fun for him, and he ended up sleeping the afternoon/night away. He has been having some headaches recently, and the doctor's believe that it could be caused by some form of meningitis. They said it's nothing that we should be alarmed about, because the steriod he took yesterday should clear that up. They gave him another chest Xray and took some blood cultures as well. Hopefully if there is something else there, they'll be able to catch it quickly.

Anyway, that's all I have for now, I'll keep everyone posted as we learn new information.

Thank you all for the love and support!

-Ashley

Benefit Dinner

2008-08-24T22:34:00.002-04:00

Hi Everyone..

I just wanted to check in briefly since we just got back from the benefit dinner. We can't thank all of you enough..I know my "thank you" speech was relative lackluster, please forgive me, as I am overtired, and insanely overwhelmed at how blessed we are to have all of you in our lives. There were a ton of people in the background who I don't actually know, who were doing a lot all night long, and if anyone knows these people, please offer them our deepest thanks.

If anyone missed it, we made over $8700 in ticket sales and raffle tickets! At the end of the night, Dan has also been given various checks and cash donations from other friends and family. The overall total for the night is about $10,000! We are shocked..and obviously speechless, considering there aren't any words to express how thankful we are..it's just not a strong enough word.

Anyway, I'll try to write something more tomorrow, but I am so unbelievably tired right now..maybe that's why I can't seem to come up with the right word combination to tell everyone how we are so thrilled to be surrounded by such amazing people, who without you..we honestly couldn't have made it this far..we love you all! ALL OF YOU (whether you like it or not)!

All our love and thanks,
Ashley & Dan.

Home.....but going back on Monday :o(

2008-08-23T18:46:00.002-04:00

Hi Everyone,

So we spoke with Dan's doctor from Fletcher Allen yesterday, and Dr Gillani from Glens Falls hasn't heard from the insurance companies yet. They want him to go back to start on his next round of Chemo so they're not putting anything off. As far as total tumor shrinkage goes, it is about 33% smaller than it was when he first started. It's not quite as far along as we'd like to be right now, but it's better than nothing for the time being. They said that if it's not significantly smaller after the next round, they're going to look into doing another needle biopsy, in case there is another form of lymphoma inside that wasn't detected by the first biopsy. They said that different chemos kill different cancer cells, so they want to cover all bases..which is a good thing in our book. We have to go back monday afternoon..because he has 4 days straight of Chemo next week, Tues-Fri. Tuesday is another spinal injection..which is probably not going to be fun for him :o(

Anyway, we'll be at the benefit dinner tomorrow night, so hopefully we'll see many of you there! We haven't gotten our furniture yet, but we have it all picked out, which is super great! I am hoping to get in there to get it ordered by tomorrow morning to give us a couple of days (at least to work with). Other than that, nothing new..I'll keep everyone posted when I know more!

<33 Ashley

HOME!

2008-08-22T14:52:00.003-04:00

Hey everyone! I just wanted to update everyone on what has been happening thus far. Dan and I are HOME! We might be here for good, it's all depending on some insurance issues with Glens Falls hospital..nothing that has to do with us, something about Dan being treated on a protocol, but not actually being a part of the program that requires this certain protocol. They have to make sure that their insurance will be able to cover what the insurance doesn't..because the hospital might not be able to afford it..weird, huh? I explain it way better in person.

Dan's PET scan came back positive. Unfortunately that means that the tumor is still there. It has only shrunk 10% since the last time they checked it. They have decided to start him on his next round of chemo (even though we don't really know when or where that's happening). So, hopefully we'll have more information on that soon.

We're in the process of getting everything settled at the aparment so I can actually take him home. It's just a matter of getting a pro-haggler in to help cut some costs for us..haha.

Anyway, we're hoping that if everything goes well on Sunday, we'll be stopping by at the dinner to see everyone! We miss you all! Feel free to call at any time!

-Ashley & Dan

Benefit Dinner Flyer

2008-08-19T20:44:00.000-04:00

http://s126.photobucket.com/albums/p103/jozy0628/?action=view&current=img022.jpg

here is an image of the flyer that Sean's brother Kevin made for the benefit dinner! It's amazing! Let me know if you have trouble opening it..i'm relatively bad at stuff like this.

In response..

2008-08-19T17:36:00.003-04:00

I've been trying to answer questions in new posts, just so that people who don't check the comments can get information as well.

First of all, thanks Kel for the healing vibes..we hope the freakin tumor cells are dying too. Dan said that it was difficult to get the PET scan done today. He opted to not take any drugs for it (against my expert advice, might i add)..and said that he was extremely uncomfortable. He did make it through the whole thing, and hopefully we'll hear the results tomorrow (and hopefully we hear that the tumor is gone..and we can go home)..yes..that would be the epitome of a perfect day for us. We'll see how that goes.

Also, I'd like to enlist the help of a few people to make the trek to Huck Finn's this weekend to look for some "healthy" furniture. We'd ideally like to get the living room stuff and the mattress, but the mattress is our main concern at this point in time. We have a ton of people who have offered to let us stay with them while we're getting the apartment situated, but we'd like to get it done sooner, rather than later..and we currently have a grill sitting in the middle of our bed frame (classy, I know)..so it'll take a little while to get at least that organized. Not sure if the painting got done (not a big deal if it didn't, but I'm hoping to get the carpets cleaned this weekend, and then I think that cleaning people will be going in to scour the rest).

Hmmm..other than that, nothing much happening up here. We've both been sleeping most of the day, as we had some trouble sleeping last night. Dan's port is extremely sore..and it was hard for him to get comfortable. Sooo..hopefully that means that tomorrow will come faster and we'll have some new news for everyone. Either way..we should be home within the next day or so to spend another weekend.

We love you all!!

Ashley & Dan

This Week..

2008-08-18T19:40:00.002-04:00

Hi Everyone!

We're back in Burlington for the time being. Dan got a port put in today after the mishap with the Groshong catheter..the procedure went well, and Dan is doing well this evening! Yay! He is getting his PET Scan first thing tomorrow morning, which will show if the Chemo is working, or if there are any new tumors. Let's pray that all is going well in that aspect. Then on Wednesday, he has Chemo again, and another appointment with his doctors..so we'll find out if his doctors want him to stay the extra week, or if we'll be able to go home. We're definitely going to try to make it to the benefit dinner on Sunday evening. We might come home again for the weekend, and then return to Burlington on Monday if all goes according to plan.

To answer Ellen's questions, the ride home/back went very well. Dan actually drove most of the way (both ways!). He's been feeling well enough to drive, and get out and move around a little more than he was before. It typically gets rough for him towards Friday/Saturday, but then he starts to feel better. Other than that, nothing else too exciting going on. Thank you to everyone who helped us out this weekend! Rick and Steve both helped to move our furniture out of the apartment..and even put together the grill we had gotten for Christmas! Soo..that is fantastic, and we can't thank them enough! Hopefully the rest of the apartment stuff will come together in the next week. We looked into getting new furniture..which will play the biggest part in when Dan can actually go and stay at home. We don't have a mattress, soooo..that will be an incentive to go out and get one sooner. Sooo, it's been super fun, if you can imagine.

Anyway, that's all I have for now..thanks to everyone for everything you've all done for us! You've made this whole thing so much easier on both of us than we could have ever hoped for. We hope to see everyone this weekend, we miss you all!

-Ashley and Dan

Greetings from HOME!

2008-08-14T22:22:00.002-04:00

Hi everyone! YAY! We are home for the weekend..which is pretty fabulous! Dan is enjoying being here, and it's going to be a total bummer when we have to go back on Sunday, but I suppose we'll deal. Dan is getting a port put in on Monday afternoon, because his Groshong catheter was cracked and leaking..soo..awesome. He got that taken out on Wednesday, which I'm sure was way fun for him. We unfortunately came home to an obnoxiously disgusting apartment, so huge thanks to Kelley and Aunt Mag for coming over and helping to sift through the garbage..almost literally. We only got a little bit done, but it already looks tons better! Sean was nice enough to clean his entire room to let us stay in for the weekend while we clean stuff out of the apartment (which huge props to Sean!) It really stinks, but we're going to have to invest in new furniture, because our old stuff is just not going to cut it if we're trying to keep our apartment sanitized.

I have a little bit more information on the benefit dinner. I'll just repost the old stuff too.

August 24th (Sunday)
5pm -9pm
Eagle's Club (Crescent Rd - Saratoga)
Dinner - Live Music - Raffles
$8 in advance - Contact Jocelyn Thorne (518) 879-1669
$10 at the door

They will be raffling off some pretty awesome stuff..
-Playstation 3
- Flat Screen TV (not sure of the size, waiting for confirmation from Best Buy)
- BOX TICKETS TO A YANKEES/RED SOX GAME!!!!
- DVDs, CDs, Videogames
- Gift Baskets
-Gift Cards

I think that it's going to be a really great time for anyone who wants to come! We are so insanely grateful to everyone who has contributed their time and efforts into making this happen. We can't thank you guys enough..everyone has been so amazing, and we know how blessed we are to have you all in our lives. Anyway..we are going to be here until Sunday afternoon/evening, so if anyone wants to hang out or anything, please feel free to call us (518) 505-7928.

We love you all!

Ashley

Danny is home! YAY!

2008-08-13T21:19:00.002-04:00

Hey everyone Danny and Ashley are home for the weekend. THey are staying at Sean's house until Sun/Mon.
Ashley is going to be cleaning out their apt. getting it Danny proofed. If anyone is available to lend a hand that would be great. She is going to be calling me tom. and I will get the word out.
The place needs to be fairly germ free so that Danny does not get sick. Ashley is going to need help moving out couches etc. I know some of our big strong men can help out there (where is that laughing smiley?)
Call me if you want to help!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
How awesome is it that they are home?

Hi All

2008-08-10T17:51:00.002-04:00

So..nothing new really happening in Burlington this weekend. Sean came up last night (with Dan's shoes!) and hung out for the day..it was nice having another body in the Hope Lodge with us. We finally saw the Batman movie! Woohoo! Dan has an appointment tomorrow and then has another round of Chemo on Wednesday. I'm hoping that maybe we can come home on Wednesday night and hang out for a few days. If not, I might come home for a few days. I've been pretty homesick, and maybe going home would be beneficial for both of us. That's still up in the air..I'll let everyone know if we do end up coming home. Other than that..nothing new. He's been tired a lot, and not really up for doing too much, but we had a few visitors on Friday as well, and he really enjoyed having other people to chat with for a little bit. Anyway..I just wanted to let everyone know I haven't forgotten about updating you all, it's just been a relatively uneventful week. I'll update again soon.

Thanks again for all of the love and support! We love you all!

-Ashley (& Dan)

Thursday..

2008-08-07T08:34:00.004-04:00

Hi All..Sorry about the lack of updates..but not too much has happened up here. Dan got another round of Chemo yesterday. It went pretty well, but it takes a lot out of him. We put his name on the checking account too..so at least we got that accomplished that yesterday. When we spoke with his doctors yesterday, they were talking about getting him home by August 20th! That would be his official 29th day of induction, so they're going to see where the tumor is at that point in time. It would be really great to get home by then. I've been trying to get him out to see Burlington little by little, but he gets tired and nothing quite compares to home. Being this far away from our friends and family is extremely disheartening..but obviously necessary for now.

Quick favor though..if anyone is planning on coming up this weekend, would you be able to bring Dan's sneakers? He's happy about being out, but he's got no arches on his feet, and his flip flops are killing him. If you could let me know, that would be great, and I'll figure something out with my mom who has our apartment key.

Anyway, thank you so much to everyone for all of the love and support! We definitely wouldn't have gotten this far in one piece without you all. Feel free to call us at any time..now that Dan is out, he's more open to chatting on the phone as well :o)

-Ashley & Dan

Evening of August 5th..

2008-08-05T20:15:00.002-04:00

Hellllo! We just got back from dinner..first one out together since the beginning of July! Dan got himself a nice burger..at this place that Sarah and her mom found..it's literally right on Lake Champlain..on a dock..it was amazing! To answer Ellen's question, there is a grill at the Hope Lodge. Our tentative address is as follows:

Hope Lodge
Lois McClure-Bee Tabakin Building
237 East Avenue
Burlington, VT 05401-3412

I say tentative, because Dan could become neutropenic at any time, and his doctors could decide to re-admit him. We're crossing our fingers that doesn't happen, but it very well may. His white blood cell count actually went UP overnight..which is a major plus, but we need to anticipate that it may go back down again. Dan is now administering ALL of his medications, including his blood thinners, which makes this outpatient thing possible (and way less expensive). We did receive information on some insulin pumps, so we've been looking into those..some of which have sensors that have alarms that sound when his blood sugar gets too high or too low. Neato.

Sooo..other than that HUGE/FANTASTIC news, I really don't have too much else right now. Dan goes back in tomorrow for his first round of Chemo as an outpatient. We're probably in for the night, just organizing stuff and whatnot. Feel free to contact us about anything!

We love you all, and we are thrilled to see how well he's been doing. Hopefully our guy can keep up the good work :o)

-Ashley (& Dan)

FINALLY!

2008-08-05T10:36:00.002-04:00

Hi everyone! As of right now, Dan should be getting discharged around NOON! woohoo! We are both extremely excited. Although we will be staying in Burlington for the remainder of his induction (most likely), we'll be in the Hope Lodge as opposed to the hospital..which is very exciting. Unfortunately, Dan's white blood cell count continues to inch closer to him being neutropenic, so he might end up back in the hospital in a few days..but I suppose any freedom they can give him will be a nice "vacation" for the both of us. He already has the afternoon mapped out with some shopping excursions in downtown Burlington, moreso window shopping, but it'll be great to get him down there to walk around! Anyway, I just wanted to let everyone know, I'll definitely update more later.

We love you all!

Ashley

Quick update/correction

2008-08-03T13:18:00.002-04:00

Hello again...I have a quick update to correct some information about Dans treatment that I had posted previously. Yesterday Dr. Grant, the attending doctor for Dan's team of doctors, agreed it was in Dan's best interest to stop taking the last couple of days worth of Dexamethazone (steroidal)...the drug causing most of Dan's blood sugar problems. Dan was concerned about stopping the Dex since it was part of his treatments so the team sent Dr. Garrett one of the med students to explain and reassure Dan it was okay to stop taking it. Dr. Garrett stated exactly what I had previously posted "the Dex is more used as a gradual bridge for other medications/chemotherapy drugs and not what is actually causing his tumor to shrink.". Now Dr. Grant came through on rounds this morning and explained that the steroid isn't solely responsible for killing the cancer cells/shrinking the tumor, but combined with the rest of Dan's treatment...it does in fact help get rid of the cancer better in most patients compared to those who didn't take the steroids. So Dr. Grant explained Dan is still currently scheduled for a few more long stints of this steroid treatment later on down the road, but if he continues to be hypoglycemic (high blood sugar) during those times...he may have to stop taking them again. This first time around he made it through about 10 days worth of his 14 day schedule of the Dex.

Now earlier this morning Dan's head Endocrinologist doctor came in to see him since his blood sugar got a little low last night and the nurses took him off the IV insulin drip. She has worked out a better plan with Dan regarding his current insulin regimen that makes him much more comfortable controlling his insulin. If he feels like he isn't getting enough insulin (or too much) compared to the amount he would normally give himself, then he can actually tell the nurses-pretty much adjust his own insulin levels he's receiving. This seemed to be the plan before and never really worked, but so far the nurses have done everything Dan has asked and his sugar is leveling out a bit. The Endocrinologist also talked about newer blood sugar monitoring devices on the market similar to what he has now to test his sugar, but much smaller and embedded under his skin...taking readings every five minutes automatically. The results are then sent directly to a portable device to be recorded, graphed, and displayed. These devices will also sound an alarm when his blood sugar goes above or below certain numbers so Dan can better react to his fluctuating blood sugar. This could be extremely helpful during the times he is on that steroidal Dexamethazone or even daily diabetic life in general. Some of these devices can also be linked up to an insulin pump connected to his body and can recommend automatic doses of insulin based on the other devices blood sugar tests. Another great thing is the frequency of blood sugar testing it does. Currently Dan checks his blood sugar as needed...in the morning and at night, before and after meals, when he feels symptomatic, etc. At the hospital on the Shep 4 Oncology unit they check it every 3-4 hours and on the McClure 5 cardiac unit they check it every hour. Most of these tests numbers don't show the exact trend of his blood sugar. For example if his blood sugar is at 250 and they give him insulin and an hour or two later they check it and its at 200, they don't know if his sugar has gone down further and then started going back up again...or if it is continuing to go down. Basically it means they have to wait until the next blood sugar check to find out which direction it's going and whether or not he needs more insulin to bring it down or more food to bring it up. Having the device which would give results almost every five minutes would definitely help Dan and the doctors be more proactive with his blood sugar levels. They gave us a few names of the devices that i think Ashley said she would research more into. The Endocrinologist said she will try and gather up more information on insulin pumps and those blood sugar monitoring devices for Dan tomorrow or Tuesday.

Well I have to get finished packing and getting the rest of my stuff together to head out. Take care!

Sean

Saturday, August 2nd

2008-08-02T18:57:00.002-04:00

Hello all!

Sorry I haven't posted anything in a while...I haven't really had much time to get online these past few days. It looks like Ashley has been on the ball with getting online and posting updates pretty promptly lately so all is good. Plus she usually covers all the bases so there really isn't much I can add to any of her posts haha. Dan will definitely be in good hands still when I head back home tomorrow afternoon. I really hate to leave, but I was only approved two weeks of unpaid leave since I didn't qualify for FMLA (The Family and Medical Leave Act). At least knowing Dan is getting better, has Ashley with him, and the fact he has such a large fan base/support group will keep my mind at ease.

Yes Ellen, that mac & cheese was shared by all! Dan really liked it...he ate most of it :) We are so glad Dan's appetite has been pretty strong still throughout his treatments. Only once or twice has he ever lost his appetite so far. He also likes keeping the Food Network on almost all day which seems to help him keep it haha. Home cooked food is definitely a plus as well. I know Dan has been craving a really good steak since there isn't much red meat on the hospital menu. So if anyone is stumped on bringing something to him, that might be a nice surprise for him! I would just suggest that someone claims it so he doesn't have 50 pounds of steak in his room haha. At least steak doesn't really have any sugars or carbs in it so it shouldn't affect his blood sugar very much either!

Speaking of Dan's blood sugar, it has been really good lately. The IV insulin drip has really made much more of a difference than he thought it would. He was really uneasy about it at first, but now he loves how fast they have been able to adjust his insulin. On the McClure 5th floor unit (Cardiac), they have been able to give him much more attention...like checking his blood sugar every hour instead of every 3-4 hours when he was on Sheppard 4th floor unit (Oncology/Hematology). It wasn't that Shep 4 was not doing there job, but they were extremely limited by doctors orders, newly established procedural protocols for their particular unit, the amount of insulin they could have on hand/ordered, and the fact they didn't have the appropriate staff to give his diabetes the attention he needed while on the Dexamethazone (the steroidal). As Ashley stated though, his team of doctors have decided it is in Dan's best interest to stop the Dex since it isn't instrumental for his cancer treatment plan. They also explained that the Dex is more used as a gradual bridge for other medications/chemotherapy drugs and not what is actually causing his tumor to shrink. Dan's blood sugar should even out and be more controllable/predictable within the next few days as the Dex leaves his system.

When Dan's blood sugar first started getting too out of control, he took it upon himself to keep a log of his blood sugar numbers. Even though the nurses were keeping track, he (as well as Ashley and I) felt much better knowing his sugars while at the hospital. The Endocrinologists and his team of doctors felt it was a great idea as well. Dan not only keeps track of his blood sugar numbers, but he also writes down the date/time they test it, how much insulin they give him, what type of insulin (fast acting, basil/baseline, or IV units), when he eats meals/snacks, how many carbs, and even when/what medications and treatments he receives throughout the day. I think this really helps Dan understand and remember what medications he is taking and what they are for. Before he seemed so confused every time they came with a bagful of meds. He even got the nurses to print out all of his lab reports from blood/urine tests and have one of his doctors sit down with him to explain what details of the lab work results to pay attention to and what they meant. Dan seems to have taken much more of an interest in his disease and the specific details of whats going on with him. He seems much more confident and less scared of his treatments and recovery process.

Recently I have been bored sitting in Dan's room at the hospital with my laptop (without Internet access) , so I decided to put all of his blood sugar data he has been collecting into an Excel spreadsheet. It keeps it a bit more organized and also makes it easier to understand the ups/downs of his blood sugar. I even made a graph which seems to really represent the trends of his sugar levels in correlation to food and meds throughout the day. Since I'll be gone and at work for the next few weeks, I'll give Dan & Ashley the digital files as well as printouts so they can continue to keep it updated...and so others can even look at it when they visit if interested. I know Dan said he wants to try and keep up on the log even after he is out of the hospital to try and keep a better handle on his diabetes...especially since he's not entirely sure how his body will react during maintenance treatments and being neutropenic over the next few years.

Besides that I think the only other news I have is that Dan's uncle Marty from New Hampshire stopped by for a good portion of the afternoon. We had a pretty good time talking and telling stories...plus he bought us all food-the key to all three of our hearts haha. As always, Dan loves seeing visitors...the more the merrier!

Well this concludes my post for tonight and probably for a while since I will be leaving tomorrow. I may be coming back home to Saratoga to work, but I'll be back to the hospital in Burlington to see Dan every weekend until he gets back to the area. Let me know if anyone wants to carpool...my email address is SeanusMaximus213@Yahoo.com and if you didn't have it before my cell phone number is 518-424-6717.

Take care and as always...thanks for all of the love and support!

~Sean Tierney

Friday, August 1st

2008-08-01T15:07:00.002-04:00

Hello Again.

We have some news from Vermont today. Dan was recently transferred back into the cardiac wing. Well, he was in the cardiac wing in Glens Falls, but he's there now as well. This morning, his blood sugar spiked to close to 600. Normal blood sugar is between around 120(ish). We were in an outpatient appointment, and had to have the Endocrine team, as well as a nurse from his floor rush to us and bring insulin. They decided to put him on an insulin drip for at least 24 hours. They have also decided to stop the Dexamethasone. It is one of the Chemo treatments he has been getting, in a pill form..it is a steroid, but they believe that it is what is responsible for making his blood sugar go so high.

Dan got a spinal tap yesterday, as well as some Chemo injected into his spinal column. Sean and I were lucky enough to stay in the room for the procedure, and for those of you who know me..I don't typically react to things like that, but I definitely almost passed out. It was a lot of fun, and the doctors enjoy reminding me of how stupid I looked at the time. We also got confirmation that his tumor has shrunk! His tumor was originally 12cm x 6cm..it is now 10cm x 4cm. It might not seem like much, but it's pretty huge, and other than the blood sugar issues, he's been doing much better!

Anyone interested in stopping by, please feel free! Dan really looks forward to seeing people, and if you have the time, it would really mean a lot to him. Obviously we're here for him, but it's nice to have some fresh faces every once in a while..especially now that he's getting so antsy.

Anyway, that's all I have for now, I think. Sean might update later with something I might have missed. We're trying to keep up on the sleep thing, but sometimes that doesn't always work out in our favor.

Thanks for the continued support <33

-Ashley

Wednesday..

2008-07-30T23:07:00.003-04:00

Hi All. So, we did find out that we will be staying here for the next three weeks. All of the doctors feel that keeping Dan here for the time being would be best for his treatment right now. He's been sleeping a lot better, but he will most likely start feeling the effects of the Chemo soon. Therefore, whenever anyone wants to stop by for a visit, anytime is great for us. We don't really go anywhere.

As for the Tumor Lysis Syndrome, I'm not entirely sure as to the symptoms of this. I know he is on at least one medication to help prevent feeling these. I'll ask the doctors tomorrow.

I also set up a bank account at Key Bank for those who were interested in donating money. I had to put the account in my name, because Dan was unable to be present with me at the time. Kelley has the account number, and anyone else who would like it, feel free to ask. I'd prefer to not post the number here for obvious reasons.

Other than that, nothing too exciting. They postponed one of his Chemos today due to the fact that it was one that would be injected into his spine, and they had given him blood thinners this morning. They wanted to stop the blood thinners and then proceed with the procedure to prevent any bruising inside around the spinal column. I trust their judgement on this one too.

Anyway, that's all I have for now. Thanks again for everyone's continued love and support!

-Ashley

Update for Tuesday.

2008-07-29T15:36:00.003-04:00

Hi Everyone!

Just wanted to send a small update. Dan got his GROSHONG catheter put in this morning. He made it through the procedure without any major issues. The doctors said that there weren't any major concerns of clotting, because the catheter has valves that close in order to prevent clotting, plus Dan has been on the anti-coagulation drugs for over a week now, so they'd be surprised if any clots did form. Dan had to lay flat in order to get through the procedure, and they said he did a really great job with that. He is in a little bit of pain, but he said that it's more achey than anything else.

I did check into the Hyper CVAD regime, that Sean from DC had inquired about, and his doctor said that he is receiving 5 out of 6 of the medications that are used in this regime, and one has been substituted with something a little different. Dan is still having some serious blood sugar issues. His Endocrinologist said he was going to check into letting Dan administer his own insulin. If not, there has been talk of putting him on an insulin drip, or pump. If that happens, they'll probably have to send him back to intensive care. There has also been some talk about maybe sending Dan back to Glens Falls at the end of the week. It's just talk, nothing for sure, but they said that he has been reacting really well to the Chemo, so Dr. Gillani might be interested in managing the remainder of Dan's Chemo from there, so we'll be closer to home. This all really depends on how Dan is doing, and if Dr. Gillani feels comfortable continuing Dan's treatment. Dr. Gillani was taught at Fletcher Allen by Dan's attending, so we're pretty confident that either way, he'll be in good hands.

Sean mentioned removing the IVs from his arm/wrist. They would probably end up removing those either way, or changing them, because they've been in for 6 days now..and they're supposed to be in for only two. Also, the dressings on his Groshong catheter will be changed tomorrow to ensure that they are doing everything they can to prevent infection. We did learn today that Dan is showing some signs of having Tumor Lysis Syndrome. This means that his electrolyte count has increased significantly, due to the fact that pieces of the tumor have been melting down and its cells are entering Dan's blood stream, and it isn't all being filtered out by the kidneys. They have been giving him something that is supposed to prevent him from feeling any actual symptoms of this syndrome, so we're hoping that's still true tomorrow or a few days from now.

Anyway, that's all I really have for now. We did get some information about this new catheter (nice picture find, Sean), which is made by BARD, but not in Glens Falls..haha. We have a friend who works there so I had contacted him this morning to ask about it. He thinks they are made in one of their other plants, but it's still pretty cool that it's the same company. If anyone wants paper copies of these, I can see what I can do about scanning and sending hard copies to people..otherwise, I can send information home with people when they come to visit. Let me know if this is something that interests those who might be stopping up in the next week or so.

Thanks for all of the love and support! We love you all!

-Ashley

Groshen Catheter success!

2008-07-29T12:56:00.002-04:00

I just wanted to stop in and let everyone know the procedure to put in the Double Lumen Groshen Catheter was a complete success! It's a central port in his chest that they will be able to draw blood from and put in medication (like the Chemo) from now on. They can take the IV lines out of his wrist and forearms now as well. Ashley or I will give another update later...

Take care and as always, thanks for all of the love and support!

Sean Tierney

PS- This is what the Double Lumen Groshen Catheter looks like...made by BARD in Glens Falls, NY!!

YAY! We've finally figured it out.

2008-07-27T22:44:00.001-04:00

Yeah, we'd still be in the dark if it weren't for Kelley's technical training. So, we're up and running on this end. Nothing too new, Dan got a new roommate this evening. Much more pleasant and lucid than his last one. I think that makes him somewhat more comfortable than he was with the last guy. He's starting to go a little stir crazy, and he's very homesick. We're doing everything we can to keep him comfortable and in good spirits. It definitely helps that it is shark week on the discovery channel! We've missed it every time since we've been together, so he finally has the chance to sit down and watch it..so woohoo for that, I suppose. Anyway, this is a relatively short post..Kelley has summed up pretty much every other aspect of the day, it was relatively uneventful when it came to his actual treatment. It was really nice to see everyone who stopped by, so thanks to everyone who came today and yesterday! Dan really looks forward to having visitors, and I believe that his family will be venturing up tomorrow, so that will be nice as well. As always, feel free to call with any questions! We all love you guys!

Sean's update pre new post button application

2008-07-27T21:48:00.000-04:00

***This was supposed to post last night, but i actually fell asleep while typing this haha.***Ashley and I must have the same problem because I can't find "New Post" at the top of the page either haha.I just wanted to give you guys an update of how things have been going since Ashley's last update.Dan finally has the room to himself at the moment. The guy who used to be next to him had a world of problems and wasn't all with it unfortunately. Poor guy had to go to the bathroom every 45 minutes or so and sometimes didn't make it to the bathroom in time or out of his bed. On top of that, the guy had a bed alarm which sounded like a fire alarm right next to your ear every time he tried to get out of bed. Ashley ended up heading back to the lodge in order to update everyone and get some things done before bed. Dan was so miserable and restless from all the noise and commotion from the nurses coming in and out, I ended up spending the night in the room with him. Figured if he was going to be awake on and off throughout the night and be miserable, I might as well keep him company. Lucky for Dan and I the guy’s bed alarm only went off eleven times throughout the night! Also three times the nurses had to come in and change the sheets. Let’s just say we didn't get much sleep last night. Ashley offered to come back down, but figured it would be better off if one of us had a full night’s sleep haha. I'm not too sure about Dan, but I was a bit cranky today.Besides that excitement, better news is Dan's still improving! It seems like every day he is getting a little bit better. He still has some pretty long and heavy coughing boughts, but breathing and lying closer to flat is getting slightly easier day by day. He is even off the oxygen most of the time now too. Today Dan had another dose of intervenes chemo (Asparaginase). He took it pretty well...only some mild nausea and a little drained, but much better than his very first chemo treatment where they gave him like three different kinds.The lodge has been an amazing place to stay. I honestly think I will be donating some money to the Hope Lodge when this is all over. The resources available here, the quiet environment, and the fact it's free lodging really helps. The kitchen alone is amazing haha. A couple of Dan’s doctors came in this morning and encouraged him to eat home cooked food or other favorite foods now before he loses his appetite or ability to keep some foods down. So after roughing it out through the sleepless night with Dan, I made him some chocolate chip cookies. Granted I had a pre-mixed batter, but without the kitchen- I wouldn't have been able to make him and Ashley fresh cookies! Anyways, the kitchen in the lodge was also very helpful when my brother Kevin came up. He brought marinated chicken breasts in a crock pot and baked macaroni & cheese that his wife Julie made for Dan, Ashley, and I. We were able to heat everything up nicely in the "high-tech" oven before bringing it over to the hospital for us to eat with Dan. It was nice to have some home cooked meals again.Today was a pretty busy day for visitors. Dan's grandmother came up, as well as Kevin and Marie...I think they were Darleens cousin? Also half of my family came up. It was my younger brother Ethan, older brother Kevin (making the T-Shirts), as well as my parents Martin and Lynn. My mother bought him a journal for him to either write or draw in...or even for all his visitors to write things in it for him. It's dark green with a Celtic cross on the front. I know his hands are still a little tender tender from all the needle pokes and IV lines, but hopefully that will get better in time.As always, your love and support is always appreciated. I'm sure you will be hearing from us again soon. I know Ashley has two of Dan's phones and one of her own (three in total), but if anyone can't get through...my cell phone number is 518-424-6717.~SeanPS- Love that picture of the three of us. Drinking must have been involved if my head is coming out of my chest haha.

Went to see Dan

2008-07-27T21:37:00.002-04:00

Went to see Danny today with Oma. He was in good spirits which was great to see. We got to visit with Ash and Sean as well as Rock and another friend. Sue, Joe and Grandma were there as well!
Dan was cracking us all up with his Geek Squad stories which just goes to prove my theories on how screwed up people really are and that "we" are quite normal.
Chemo is going "well" as in shrinking the tumor and he seemed much more comfortable today compared to last week. He is off of oxygen, walking around, eating food, and even swallowing some pills.
His sugar is a bit out of control right now but Sean and Ashley arranged for two endocrinologists on his case and they are working very hard to straighten things out. You could see it was stressing Dan out a bit but it will even out in time.
We took a tour of Ashley and Seans new abode and it is great. They have a full kitchen to work with so sending grocery $, gift cards, or care packages to them would probably help out quite a bit!
As Ellen had said in her post the ride is gorgeous and it was great seeing Dan looking better and better!
Oh...and we set Ashley up so she can use the "new post" button....sorry Ash..my bad!

Jocelyn's contact information...

2008-07-25T23:10:00.001-04:00

I completely forgot to leave Jocelyn's contact information. Phone #: (518) 879-1669E-mail: jozy62884@hotmail.comSorry!

Hey Ash...it is the NEW POST button at the top

2008-07-25T23:07:00.002-04:00

Ok Ash...how long have you been dating a Geek Squad Double Agent? It is that little button on the upper right side of the screen...NEW POST....
Just jokin'! Oh..I added some pix of you three. Check them out at the bottom of the page...was alcohol involved?

"Hi Everyone! Good news coming from Vermont tonight. Dan was feeling a lot better today. He was able to lean back more without having too much difficulty breathing. His cough did worsen a little bit, which they believe is caused by the fluid outside of his lungs. They are hoping that fluid will go away on its own as the tumor shrinks. Speaking of which the doctors told us today that due to preliminary urine screens they believe that tumor has already started to shed away. They were taking bets that Dan will be feeling somewhat "normal" by Monday. They are hoping that by then he will be able to lay down to go to sleep instead of sleeping in his usual 90 degree position. Yay..that should help him feel a lot better as well, as most of you know that he hasn't gotten a decent night's sleep in a while. The swelling in his arms and face have also gone down significantly. They believe that the blood thinners are really helping his blood flow more smoothly, which helps him feel that much more comfortable. Dan was moved back to the Oncology floor from ICU today. He doesn't have his own room, but his nurse said that she was going to work on moving him to something a little more comfortable tomorrow. He has a roommate right now with an extremely loud bed alarm, and naturally doesn't want to stay in bed. Poor guy, he can't get a break..we're crossing our fingers that they move him to a private room which would be a lot more accommodating when it comes to people visiting this weekend. I also figured I'd throw out some more information for everyone. Becky had asked about Dan's schedule. The doctors were nice enough to provide some literature on all of the Chemotherapy drugs that Dan will be on, and when he will be receiving each. Day 1 is referring to Wednesday, July 23rd, Day 2 July 24th, etc...In order to keep at least myself straight, I located the local Staples and bought a small date book to keep track of the days and treatments.The drugs are as follows: Dexamethasone: Anti-Inflamitory medication; used specifically to decrease swelling (edema), associated with tumors of the spine and brain. Given either orally or intravenously Days 1 thru 14. **This drug worsens blood sugar control**On that note, before I continue, we did ask to speak with an Endocrinologist and we managed to pull two on board to Dan's treatment plan. We were concerned with his blood sugar getting out of control and making him even more uncomfortable. They have increased his insulin dosages, and wish to get his blood sugar under control within the next 24 hours or so. We expect to see good changes in Dan's mood when we get everything squared away with at least that. Cytarabine: Used to treat cancers in the brain and spinal cord. This was given on Day 1 as a precautionary measure. Dan never got his MRI done in Glens Falls, so they never actually checked for cancer in either of those places. They did perform a "spinal tap", where they take a sample of spinal fluid to check for cancerous cells, but they did inject him with this drug at the same time, because they didn't want to wait to find out if there was something there. If there isn't cancer in these places, the drug is not harmful, but the doctors wanted to be safe..cancer in these places can cause some serious problems including complete paralysis. I agreed with them on this one. Vincristine: A drug used to treat blood cancers, acute leukemia, etc. Given intravenously. Days 1, 8, 15, 22. Daunorubicin: Used to treat lymphoblastic lymphoma. Given intravenously, is the primary reason for hair loss in cancer patients. Days 1, 8, 15, 22. Methotrexate: Used in the treatment of acute lymphoblastic leukemia. Given as in injection into the spinal column. Days 8, 29. Asparaginase: Used in the treatment of Acute lymphocytic leukemia. Given intravenously. Day 4 (Tomorrow!)So those are the drugs and when they are going to be administered. I have packets on all of them, but I figured I'd give you all a general gist of what's going on with that. Also, our friends Jocelyn and Patti are in the process of planning a benefit dinner for Dan. It will take place on August 24th from 5pm-9pm at the Eagle's club in Saratoga. Right now tickets are on sale at Best Buy for $8 in advance, or they will be available for $10 at the door. I believe that there will be raffles, and live music, and T-Shirt sales, etc. We are hoping that Dan will be back in Saratoga by then and is feeling up to making an appearance. Jocelyn and Patti have both been working extremely hard on this, and after speaking with Jocelyn this afternoon, if anyone has any ideas for her, get in contact with her sometime in the near future. She seems very open to suggestions, and I'm sure they can use all the help they can get. I know there was some talk about opening up a bank account for us. Right now I'm waiting on Sean's brother Kevin to make an appearance in Vermont. They will be coming up some time tomorrow, and he will have my wallet in his possession. I left it at home without thinking, therefore I don't have any ID on me..nice going Ashley. Once I get that, I will venture into town and see what I can come up with. I think that Key Banks usually have some sort of thing set up for funds of this nature. As soon as I figure that out, I'll let everyone know. I think I have said pretty much what I wanted to fill you all in on. As always, if anyone has any questions, feel free to call either Sean or myself at any time! We all appreciate everything you've all been doing, even from so far away. We couldn't get through this without you! I know that Dan is looking forward to having visitors coming to see him, so if anyone reading this has some time off and would like to make the trek up here, please don't hesitate!! Again, thank you for the love and support. We have been passing all of your messages on to Dan, and knowing that you're all behind him makes all the difference! <3 Ashley(& Dan & Sean)PS..how in the world do you create your own post on this thing? I thought that after dating Dan for so long, I'd be relatively computer savvy, no such luck. Any ideas? Thanks!

Iron Butt Ride

2008-07-25T22:07:00.002-04:00

Mike took the day off & we rode the motorcycle up to see Dan, Ashley & Sean. All good news today. Some of the Drs. came in & said they were going to move Dan TODAY (Friday) out of ICU & into a regular room. Same floor (4th), but a standard room. PLUS, they said - I think it was both blood tests & urine tests showed the tumor is dissolving already from the initial chemo's. Dan is able to lean back a little in a chair to rest....The Drs. were taking bets that either Sunday or Monday - he will feel normal and will be able to lay down in his bed to sleep!!! The swelling in his face/arms & legs from the clot has gone down considerably. He's eating real food - not on a liquid diet. He's had 2 endocrinologists in to help control his diabetes (blood sugars were wild). He has a case worker that is helping them with all kinds of things other than health. Sean & Ashley seem to be set for a few days with a room at "the lodge"....a place just down the street from the hospital for outpatients & families who have people IN THE hospital..... we went UP to Burlington by way of Route 22 & 7 thru VT...then coming home we took the ferry across Lake Champlain out of Charlotte and into Essex & came down the thruway. I hope everyone else's trip up to see them all is as nice as ours was today ...especially with all the good news.

Benefit for Danny

2008-07-25T11:25:00.002-04:00

This is from Ashley...more details to follow.
I "may" be going to UVM on Sunday. If anyone has anything they want me to bring to Dan, Ashley, and Sean you can drop it off here before Sunday.

Also...we are working on setting up at PayPal account for them. The funds can be sent directly to them via your bank account. I will update you all on that as I get my act together.

Keep sending Dan healing prayers I have a feeling they are working!
Kelley

Sean's Update

2008-07-25T11:21:00.001-04:00

Hi Everyone,I believe I have met most of you within this past week or so. Just in case we haven't met, my name is Sean Tierney. If you've been to the hospital in Glens Falls to visit Dan, I'm the guy you have probably seen with him. I have been there for Dan since day one like Ashley has. Even though I have unfortunately used up all of my paid time from work, I was at least granted an un-paid leave of absence for this week and next. That way I can be here to support Dan (as well as Ashley) through his first two weeks of treatments here at Fletcher Allen. The label best friend gets thrown around a lot during introductions, but I see Dan more as a brother than a friend. He has been there for me through many trying times in my life and in turn I am making sure to try and be there for him as much as I possibly can.It looks like Ashley has pretty much summed up everything going on lately in her last post, but I'll try and throw in a few more details, points, and ideas.Tonight is Dans second night in the ICU. His team of doctors were originally planning on sending him back to his original room on Sheppard floor, but they decided to keep him for another night as a precautionary measure. His first round of chemo was pretty intense. They want to make sure that when the tumor starts to shed/shrink, his kidneys flush all of the waste and chemo out of his body properly. His oxygen levels were slightly low too so they also want to make sure that gets better before sending him back to his normal room. ICU can be a little scary for Dan as well as Ashley and I, but at least they have the ability to monitor all of his stats carefully 24/7.So far Dan's biggest complaint has been comfort. He hasn't been in any real pain, just extremely uncomfortable and tired. He still can't lie even remotely back in bed or in a chair which makes sleeping incredibly hard for him. We have tried propping him upright with pillows but that doesn't seem to work. His best sleep has been in a chair leaning forward with his arms and head on a pillow stacked hospital tray table. My brother’s wife suggested maybe getting one of those huge pillow things with arms for him to try and get comfortable while sitting up. I believe they are called "husbands", but neither Ashley nor I have much money or time to look around town or shop in general lately.So far movies and tv seem to keep him the most occupied. We have books, magazines, puzzle books, card games, and even the XBOX game system...but he hasn’t really touched much of that. Dan seems too tired to really enjoy any of that yet. After chemo his energy levels went extremely down which was to be expected. He doesn't move around much and it seems like talking is even hard for him to do lately. On a good note, we have discovered Ashley has some magic hands! Dan has had a pretty bad headache which medicine hasn’t seemed to take care of lately. That on top of his low oxygen levels had us pretty bummed since it seemed like we could do nothing to make him feel better or more comfortable. Ashley decided to rub his head to try and alleviate some of his headache pain. Not only did it help, but every time she was rubbing his head Dan’s oxygen levels would increase dramatically!Another nice thing is that one of the nurses made a binder for us to go through with vast amounts of information. It has everything from treatment schedules, to things to expect with chemotherapy, and even all the drug fact sheets on everything he has been/will be taking during his treatment.My brother is making three different T-shirt designs for Dan that we can sell for the Danny Fund. He has one pretty much finished and when the others are done I will post pictures of them or links to the pictures for you all to look at. Maybe we can set up a website for people to buy them or just do it locally by giving out a few boxes of shirts to a few of us to sell to family and friends. If not, there is always the benefit dinner. I don't have much details on the dinner yet, but I'll get Ashley to post as much of the specifics as she can and maybe even a contact number of the person who is organizing this event.Well I really have a bunch more things to write about, but it’s pretty late and I guess I should try and get some sleep. It’s really nice to have this blog set up, it really gets the information out there and gives us all a place to bounce ideas off each other. Expect to see another post from Ashley or myself very soon. Take care and thanks for all of the support.~Sean Tierney

Ashley's update

2008-07-25T11:20:00.001-04:00

Right now we don't have an official address for him. He's still in ICU, but once he gets back to a regular room, I'll find out where to send packages and whatnot. For the time being, just send them to his dad's house, which my mom has indicated the address. We would love for people to come visit. Hopefully by this weekend he'll be feeling better, but having people around would probably help a lot. I do want to stress that if you are ill or you have been exposed to someone with an illness (communicable), please stay home until you are feeling better. Dan's immune system is going to weaken very quickly and exposure to further illnesses could be extremely bad for him. Other than that, I just want to thank Kelley for keeping this updated. I can't get online often to keep everyone posted, but she's been doing a great job. Thank you to all of you for all of the love and support we've received in the past week. As we spend more time in the hospital and get less sleep and get more irritable, it really helps to have all of you backing us up, both near and far. Our biggest concern is keeping the faith, and we wouldn't be able to do that without all of you. We love you all!

Diagnosis

2008-07-22T09:24:00.002-04:00

Dan is being moved to UVM medical center this am. His Dr. was in and this is the diagnosis:
Pre T Cell Lymphoblastic lymphoma
Preliminary bone marrow biopsy: negative
Treatment: In hospital 4-6 weeks, after care 18-24 months
Stage: pending final biopsy results but looking like stage 2 at this point.
They are putting him at UVM bc they have more aggressive treatment there for his age demographic. He will also need a pressurized room during treatment which they have there.

Ashley is following the ambulance to UVM this am. I know it is far away but they are both going to need all of our help as much as possible.

Here is an article about the type of Cancer he has:
http://www.cancerbackup.org.uk/Cancertype/Lymphomanon-Hodgkin/TypesofNHL/Lymphoblastic

Monday July 21

2008-07-21T16:00:00.002-04:00

Danny had a bit of a coughing issue this am and was moved to the ICU. He is doing much better this afternoon. He received a breathing treatment and has an oxygen mask to use now.
He went for a CT scan (yes another one) to check on whether the steroid is shrinking the tumor or not.
Dr. Parmar (neurologist) was in to order a Brain MRI. They want to make sure there are no tumors there. They had done a throat, chest, abdomen, and pelvis CT already at this point. Following the Brain MRI they will be doing a spinal tap.

Really we don't know much more today than we did yesterday. The biopsy's should be all in tom.

They are talking about sending him either to UVM or Sloan. We were all waiting to ask the Oncologist all the "important" questions today.

Danny and Ashley are willing to go wherever they can get the most aggressive treatment for Dan!

Right now Ashley and Sean (his bff) are staying at the Amanda house in Glens Falls. It is kind of like the Ronald McDonald house.
Hopefully the oncologist will be there before the end of the day to answer some questions...otherwise I will have to hunt his ass down. Where is that smiley key?

Sunday's news

2008-07-20T22:19:00.001-04:00

As of right now Danny is in a holding pattern waiting for the results of the biopsy and the bone marrow biopsy. The talk at the hospital is that he is going to be sent to Albany Med by mid-week.

Saturday July 19th update

2008-07-19T23:15:00.002-04:00

I heard from Ashley tonight and Dan had to have his PIC (SP?) line removed. It was bothering him when they put it in. Yesterday his arm swelled up and they had to remove it. They found a blood clot that was caused by this as well. He is now on a blood thinner.
The two diagnosis they are throwing around at this point are Non-Hodgkin's and/or Acute Leukemia. Hopefully they will get the results Tuesday!

Dan Canary

2008-07-19T23:11:00.002-04:00

Dan is one of my younger cousins. He is in GF hospital right now waiting for a diagnosis. At this point many tests have been run and they are thinking they will know for sure what Danny has come Tuesday or Wednesday.
Ashley and Sean are keeping him company by spending the nights with him at the hospital.
As you can imagine they are both scared, tired, and overwhelmed.
I thought I would start this blog so that Ashley doesnt have to repeat herself 1.2 million times per day:)

I will do my best to keep everyone updated and in the know.