Tuesday, June 25, 2013

Update 06/25

Apologies for the lack of any kind of clever or helpful title.  Tom's hanging in there. He just had his 2nd of 5 intrathecal chemos yesterday.  It was definitely a doozie.  They should take about a half hour if they go superbly well and this one took about an hour and a half.  On top of that they also had him stay in an unused xray room laying flat for about 20 minutes (whereas last week they allowed him to walk out and go home) so it must have been rough.  He said they were just poking around constantly, sounds horrifying.  Needless to say, he's ended up with the excruciating intrathecal headaches to go along with it which leave him a bit laid up.

On the other hand, the doctor said everything was looking a-okay for Tom on Monday.  He told Tom that if he keeps it up then the six month marker being a big one should look good.  He said Tom might even be allowed to travel in three-six months time!  So that was exciting news.  Seems very pleased with him.  Apparently the six month post transplant is a big marking point as right now they'll be watching him closely for chronic graft vs. host as opposed to the acute graft vs. host.  Tom is doing very well though, he's definitely in the top of his "class if you will" along with another couple of people. I wish we could say the majority, but there have been some rather upsetting cases along the way.

The lady I had mentioned I'm sure in previous blogs who came along and sort of smashed everyone's records in terms of getting out of the hospital fastest, I may have also mentioned that she was experiencing some neuropathy (paralysis)... Well, apparently after it (the neuropathy) had consumed her entire body and has now also left her without her sight, she's been to UCSF and they've also concluded that it must just be from some of the meds that were used (so "luck" of the draw really) and they're just hoping it's temporary and will cycle through.  She is currently hospitalized.  Keep her in your thoughts.  The nurses told us they had another patient have that last year and he's just come around having regained it back and is doing therapy, etc. So hopefully it will do what they said and just cycle through for her.  Poor thing.

On a brighter note, tomorrow evening we're going out for a meal with Tom's "birthday twin" (the elder lady who got her bone marrow transplant the same day as Tom).  She's also doing remarkably well and will be soon going back home to Modesto (yay for her!!!), but her daughter who's been staying here in Sacramento with her as her caretaker will be going home (to Modesto as well) on Thursday when the other daughter/grandson arrive to take over.  So we wanted to get in a little celebration dinner to celebrate the two of them as we've grown close with them over this journey.  They're so wonderful! She's in her late 70's and she is just full of life and they're such a joy to see in the infusion center.

I think that's basically it for us around here. Things are going well and we're both kind of getting back into the swing of things. Hopefully in the next couple of weeks I'll be able to make an official job announcement on my part.  Tom is also looking to volunteer with the leukemia and lymphoma society so we'll see what comes of that.  Though nearly half way over, this year still seems to hold a lot of opportunity!

Have a marvelous rest of the week!

Tuesday, June 11, 2013

Fun Happenings and Relieving News

Hey everyone!!!

Too Much Fun!

So we've had a super busy couple of weeks!  We had Will out here visiting which was super fun!  Oliver and Jess were up for a few days as well and Alex and his friend graced us with their presence for an evening... so grateful to have company while we awaited Tom's results! :)  Will and Tom watched a lot of rugby and Cops.

This weekend, in particular, has been super busy! Friday was Brian's (my youngest brother/sibling) high school graduation!!!!
 Brian, myself, Grandma Peg, and Daniel.
 Daniel, my Dad, Brian, myself, Mom, and Grandma.
Dad, Daniel, Brian, and Tom.
Saturday Tom requested that we do breakfast at his favorite buffet around, Rolling Hills Casino.  After stuffing ourselves with an incredible amount of food, we had a quick round to check out the car show they also had going on.  We then hit the road to get home (as it was very hot... about 110F) and Tom needed to get a dressing change as he'd sweated it off!
That afternoon I joined Ashley and Alyse for a girl's date in which I was surprised with the plans! Here's a quick look of what we did! We were pretty much the stars of the class!
 Myself and my painting of Izzy.
Alyse with her painting of her dog Chewy, myself and Izzy, Ashley and her painting of Rosco!! Thanks girls!!!
Also that evening we were joined by Joe and Natalie from Jackson for dinner and some hilarious Cards Against Humanity in which I'm sure I could be rich if I had a dollar for every time Natalie exclaimed "There's something wrong with your wife!" to Tom (I swear Natalie, it was just the cards I drew... the real culprit is the person who picked them haha). Good times.
Sunday we met up for breakfast with Alyse, Clayton, Quinn (their adorable baby girl), and Ashley.  It was fantastic! While Tom was most certainly out of his element (I think it was a bit too "hippie" for him... with the one man flute band and all) and I think I may have purchased the most expensive coffee I've ever come across... we had a wonderful time.
We later joined Louie and Kelly over at their house who we haven't seen for ages and had dinner. Woo! Seriously! That is our weekend in a wrap! No wonder we were both so tired yesterday!
Not to do with our weekend, but for some fun... Team East Coast sent me some photos of them sporting the Team Tom shirts at a family get together (Doug's Retirement)!  I love it! So I definitely had to share and thought maybe other's might want to share theirs and it could be a fun little blog segment. Team Tom travels :) Note that they are sporting both flags! ;)

 So we have Linda, Linda and Michael, and Fred :)
Sitting in front are:  Nicholas (Jack's grandson/Doug's son), Jack, Cynthia, Evelyn (Cynthia's mother age 92), Lauren (Doug's daughter) and Pam (Doug's wife).  Back row wearing our team Tom shirts are:  Fred and Linda, Doug, Linda and Mike.
Thanks again to Aunt Linda for sharing photos with us! We always enjoy seeing them!  These were too good to of course not share with everyone else!!!
If anyone else wants to share photos sporting their shirts, please don't be shy and email them to me! I think it'd be super fun! Decimate Leukemia shirts (from last year's LLS walk) totally count too!!!
Lastly, given that it's out there now... we're also super excited to congratulate my sister (Corinne) and brother-in-law Mat on expecting their second child!!!! :)
Whew! I think that's a wrap on that!!!!


Now... for the Tom news!!!!

Tom's biopsy results came in yesterday! The doctor was worried about Tom's dip in counts and had Tom do an impromptu bone marrow biopsy to check for a possible return of leukemia or graft vs. host disease.  Much to our relief/surprise it came back fully clear!!!!!  Tom's marrow shows that he's at 99.83% the donor's cells.  With his counts starting to make their way back up they've speculated that maybe he just had an undetected infection that his body fought off ... but everything is good! 
Tom's hair is coming back in... he's almost got a full beard and his eyebrows/lashes back.  The rest of his hair is a bit slower in coming back in, but it's definitely on it's way!  He's starting the first of five intrathecal chemo's (spinal tap chemos) on Monday.  This will be once a week for five weeks unless they cause his counts to dip (which they can do and is normal), in which case they will have him go every other week for them.  This is just a precautionary thing to make sure that no leukemia has hidden out in the CNS and that if there is they get it. After these, as far as I understand he will be officially done with chemo treatments (party worthy?).
Happy Father's Day to those father's out there! Have a wonderful week everyone!