February nearly March already

Hi everyone,

We don't have a whole lot to share, but sometimes no news is good news right? Tom did not end up with any graft vs. host. His last doctor's appointment was in January and his doctor said that had he showed some signs of gvhd that he would consider telling Tom that a return to work would be ok, but because he didn't he is nervous and unsure of Tom's current remission state.  So he told Tom to just enjoy another two months off and a month or so from now he will have another bone marrow biopsy and with those results he will determine the course.

If Tom is still in remission he may possibly be released to work depending on the doc's confidence level in the remission status. If (God forbid) there is some evidence of relapse, he'll be back in for chemo, back to looking for another possible donor, and doing another full bone marrow transplant. There is obviously a lot of anxiety around this next bone narrow biopsy.

In other (very sad) news, this week we lost a really good friend who we met last year when Tom was in doing chemo. This guy was newly diagnosed with the same leukemia as Tom and he had a rough road ahead with many complications. He went to Stanford for his transplant in October and made it through but had graft vs host complications. He lost the ability to walk due to compressions in the back and later had lung issues. Long story short, I'm told he fought hard and that it was an unimaginably tough call in the end to take him off of life support, but his wife feels he definitely got the best care possible and that they did everything they could for him. He was a wonderful guy and he and Tom really connected, his wife visited us while Tom was in the hospital even though her husband was too (in Stanford). Please keep them in your prayers.

We received the news the night of the Leukemia and Lymphoma Society's award ceremony of which they'd asked Tom to speak and he still did. I'm very proud of him and I think he did a great job of letting people know what a good cause it is. (ps. There is no video of this)

That's all for now. Continued prayers for Tom please, we will keep you posted when he gets the results.  Also, please pray for Tom's grandad who has been in the hospital, I'm told he is getting better.

Biopsy Results 12/16/13

Sorry if I've kept anyone waiting on edge.  Two weeks ago, Thursday (12/12,), we got Tom's biopsy results and he is leukemia free!!!!!

Because Tom did not get graft vs host disease as they intended with his dli (the stem cell top up they did Oct 30th following the week of chemo), they are nervous that this remission won't stick without some form of extra reinforcement.  So they did a second dli on 12/17/13 with double the cell dosage as last time. It went well and they sent him home.

So far he seems to be responding well, we're just waiting for the stem cells to mature and hope to see some graft vs host.

In the meantime, my sister Corinne and her family along with Kathy have moved back, we had Corinne and Madalynne visiting over the weekend, we had a really good Christmas with the Walshaws, Saturday we venture north for Christmas with the Mahutgas! We have had a busy household this last week with the Belleci girls (Corinne and Madalynne), Helen and David, Oliver and Jess, and Alex! Tom goes to the doctor's next on Tuesday but only for labs and a dressing change... Not quite sure when he actually sees Dr. Carroll again.

We hope everyone has had a fantastic Christmas! Thank you to those who've sent us cards and gifties, those of the edible variety have been demolished already.

May everyone have a wonderful and SAFE New Year's! I will do my best to keep this updated with his upcoming results, etc.

Giving Thanks 2013

Here we are again, it's time to bring out the draw string pants and the loose shirts, tuck in those bibs, and dig in!  Thanksgiving!!!!

Personally, this has always been a favorite holiday of mine.  Though typically, meat choice aside, Mom would do the same spread of sides for each holiday... I just always liked Thanksgiving.  Maybe it's because both parents tended to be present, maybe it's because it's full of desserts (a more likely reason), or maybe it's those amazing hand-turkey crafts you do in school. Whatever the reason, I always look forward to a slice of pumpkin pie and some green bean casserole.

Food and nostalgia aside, the most redeeming part of this holiday (to me) is the part where we all say what we are thankful for.  Now I know on facebook it's a popular thing in the month of November to write something each day, but I personally like to think about it through the month and really celebrate everything I'm thankful for on the day of Thanksgiving.  Last year I wrote a blog and this year I'm clearly doing the same. Keep in mind this is what I'm thankful for, I can't speak for Thomas (though clearly he would agree because it's so good).

My 2013 Thankful List:

This year, I am of course thankful for the fact that after five long weeks in the hospital, Tom was sent home Monday and will be able to join the family for the holiday in the comfort of home. Last year he was released the following day. 

I am SO incredibly grateful to be able to report that his counts are recovering really well now (they were a little slow in the start, but the doc seems pleased now).

I'm so thankful to have had Helen out here for the duration of all of this.  For those who don't know, she has actually changed her return flight home twice during this stay because Tom was having such a difficult time. My level of gratitude is not even possible to articulate.

I am very thankful for my mother who at the drop of a hat, changed her appointments and came down to spend the days with Tom because both Helen and I got sick and were banned. Thank you so much for being so selfless.

I am so happy to have a job that I love, that not only gives me Thanksgiving off to be with my family, but will also pay me for it.  I worked very hard for a long time to finally have something so good with such amazing and supportive coworkers who make meals for me to take to the hospital... I'm blessed.

I am thankful to even have a place to call home and be able to host Thanksgiving.  Not even 8 months ago we weren't sure how we were going to even make ends meet.  Which leads me to my next one...

I am (and I know this goes for Tom and our families) SO incredibly grateful for the sincerely amazing generosity of all of those who have helped us in this last year.  There are way too many names to list, so please take no offense and know that with our most heartfelt appreciation we absolutely thank every one for all of the love and support.  I was very quick to leave my hometown when I was younger, but I tear up every time I tell the story of how my home community was there when I needed them and most of them not even knowing Tom and some not even knowing me, came out and supported us and helped us make it for months. Thank you Leslie and Erin/Eric and the Mesker Family, my mom, and Sav Mor, for doing all that you did to make that fundraiser such a success! I can only hope that I can be generous enough in life to really deserve it.

And for those outside of my hometown, you are not forgotten either!  We had such an amazing sense of support rise up in the Santa Cruz area and we really have the Kirby Family to thank for that and for coming up with the idea to share our story and put it out there.  It took a lot and I felt so horrible and thought everyone would judge us, but I was also scared about how we would make it work if I didn't and we were just absolutely flabbergasted by the amount of sincere care and support we received.  And I have not forgot team East Coast!  I was just telling my mother how one silver lining is the amazing bond I've been able to make with family I didn't know so well previously.  And thank you to everyone who has ever sent us cards, notes, called, cheered us on, etc. We needed it and still do and we appreciate it so much!


While the situation we are in is one I would absolutely never wish on anyone, it has really made me see how many wonderful people there are and how loved we are and how much support we really do have. Now I'm at my desk with tears in my eyes as I'm writing this, but really thank you.

Lastly, while it may go without saying... I'll say it anyway.  I am so thankful to have a husband who continues to fight, no matter how hard it gets (and it's been hard), how many weeks sick, how scary possible outcomes could be... You always do it and you pull through and I am so grateful to have such a shining example of perseverance and courage. You're my hero.


To the business side of things, Tom should have a bone marrow biopsy soon (maybe a week or so) and that should tell us if this has worked or if we have to continue and do it again, etc. Please keep him in your prayers for good results.  Thank you, thank you, thank you.

Happy Thanksgiving to Everyone!!!!!