Sunday, January 25, 2015

1/25/15 Day 16 : Operation Birthday Cards was a SUCCESS

First and foremost, I just want to say a giant THANK YOU!!! to everyone who sent a card to Tom for his birthday.  I'm sure there are still some trickling in but he definitely got over 100 cards! So crazy! So thank you, thank you, thank you for taking the time to stop and get a card, write him such wonderful messages, and send it off.  Thank you to all those who shared the event as well.  I think there was a strong contention between Sean Coon and Auntie Cheryl for "I'm a friend of ____" comments. Surprisingly, there has not been one repeat card, so I guess you're a very original group! I think Joe Doll takes the cake on that one in terms of finding a store bought card that absolutely no one else would have chosen (considering it was a card for not only just a woman, but of different ethnic origin LOL).  I also think we clearly have a very funny group of friends based on the cards that made their way in. Clearly we also have some rather crafty/artsy friends too as there were a couple of really awesome hand made cards.  Point being.... You are all SO amazing, thank you for making Tom's day as good as it could have been! <3  Jennifer, you should know those blankets you made have come quite in handy! Tom has had a couple of people ask if he's a USC fan and he gets to tell them that no it's the Huddersfield Giants team colors, haha. Also, Helen has greatly appreciated her blanket as well to keep her from freezing in here!

Well there appeared 0.1 white blood cells yesterday (which equals 100)  so he's officially on the board and it was still there today.  His hemoglobin (red cells) were hanging in there and actually did a couple of days of increasing on their own, but today they've fallen quite a bit and he will be getting a blood transfusion along with some platelets.

Poor Tom is at the point where the lining from the mouth all the way through the digestive track is gone so he's pretty sick, especially with GVHD of the mouth/possible gut as well.  Needless to say he has to take pain meds in order to just not have terrible pain in his mouth, but definitely has to take them if he wants to try and eat something.

We don't have a projected date to come home, it may be wishful thinking for end of this next week, but maybe the week after.

Andrew left before the sun was up this morning back to Michigan.  We enjoyed his company, good cooking, and I hear there's a home improvement project of a flood light that he did.  Thanks for coming out and visiting Andrew! Izzy will miss her frequent trips outside (haha).

Speaking of Izzy, thank you to Louie and Kelly for getting her a new "indestructible" (we all know the truth lol) toy for her! The timing couldn't have been more perfect since she had just destroyed her other one! If she could, she'd give you guys two paws up ;)

Simon is coming to visit from the UK next weekend so that should be something for Tom to look forward to!

A note from Tom:
Tom also would like to add thank you for all of the birthday messages, cards, and wishes. He says he's really disappointed that he isn't going back to work and that it was a big blow for him.  It will keep things complicated for a bit longer.  He says that even though it's nearly February, he hopes that everyone had a good Christmas and New Year.  He also wants everyone to know to please feel free to send him messages and stuff on Facebook, but to know that if he doesn't respond right away it's probably just because he's sick and forgetful but that he does enjoy reading them and plans to respond... eventually. 

Saturday, January 17, 2015

January 17, 2015

Well, it's been over a week now since admit and Tom finished up his chemo on Tuesday.  He did three rounds a day for five days which is why they hospitalize.  His counts dropped rather fast which helped in the sense that it eased the spleen pain because the spleen was so swollen with the leukemia, but the quick drop also robbed him of the chance to go home following chemo until infection time.  I suppose at least while in here he can get better meds for pain management.

Poor Tom's battling some serious mouth pain with both the GVHD and the mouth sores caused by the chemo and low counts.  He is in agony most of the time, but is holding off using some of the dexamethasone steroid because the doctor explained how necessary it is for him to have the GVHD, but as a last resort wrote for him to be able to have the dexamethasone.  It's incredibly important for the GVHD to flare up a bit so that it fights any leukemia and keeps him in remission.

He's been at 0.0 white blood cells which is expected, they started with the neupogen shots to increase white blood cells.  Currently we await the expected fevers/infection that typically hit around day ten due to the lack of white blood cells and today is day eight. After his white cells rebound he will be allowed to go home.

In the meantime, thank you to all those who've stopped by to visit him (Alex, Janetta, Lily, Chris, Jenny, Janet, Louie, Kelly, and Andrew who's out from Michigan), and those who've taken the time to email, call or text, and for everyone checking in.  His 28th birthday is coming up this Thursday and (because I know he won't read this) we are hoping to get as many birthday cards from as many people possible to surprise him for his birthday.  I think this would really cheer him up and give him what he needs to get back on track here.  Please message me if you need the address. :) Thank you, thank you, thank you.

Saturday, January 10, 2015

Relapse Repeated. Day 2 of Hospitalization

As the title of this blog would suggest, Tom has unfortunately relapsed.  Knowing how difficult the treatment, they offered palliative care or to go ahead and continue treatment.  So, we asked if we could go home and gather our things so we could go to the Bahamas.  KIDDING! We are sitting in our stately suite in Sutter General. Good news is, they've got the family room open again so we have access to a fridge/freezer, washer and dryer, and microwave... no stove anymore, but hey it's a step up.

The Plan:

Similar to his relapse after the first transplant, they're stopping all immune suppressing meds and doing chemo.  Stopping the immune suppressing meds is to hopefully create some graft vs. host to pop up so that we can get a graft vs. leukemia effect.  The chemo is to get him back into remission.  If we can get him into remission and get a decent but manageable amount of gvhd, they will be pleased.  Seemingly (as we've been told before), Tom just has a very resilient strain of leukemia.  He must be stubborn to the core.  Each treatment as the doc was explaining to me this morning, makes recovery harder and longer, and unfortunately chances slimmer.  So, please keep Tom in your prayers that we can just get him into remission and get some graft vs. host/leukemia so that he can be cured.

Should that step one not work in terms of not seeing graft vs. host,  they will do more chemo and do a donor leukocyte infusion (DLI).  Tom had two of these following his relapse after the first transplant. The point of that is to more aggressively try to encourage gvhd.  So that's plan A and B.  I asked if there was a plan C of possible third transplant.  Doc says that's a possibility but didn't seem too set on that and said that we just aren't going there for the time being.

Admission was yesterday afternoon and they put in a new PICC line (arm access with two lumens so they can run more than one thing at a time).   They began chemo last night and usually he's sick within the first hour (knock on wood) but so far he is doing okay.  As the doc had predicted, the chemo seems to be easing the spleen pain a little bit.  So Tom may be one of the first people to ever find slight relief out of chemo... though now he's nauseas.

So that's that. :)  Alyse and Clayton are going to be stopping by today so that will be nice.  Marc and Eric will be coming by tomorrow so it seems we'll have some company to break things up a bit.  Oliver has come up for the weekend as well to visit with his big brother.  :) We are so thankful for all of the supportive texts, calls, messages on Facebook, and emails.  It's extremely heartwarming and actually made me cry periodically yesterday as I read all of your wonderful notes of encouragement and support. We are truly blessed and lucky and to have such a great amount of support from our friends and family. Know that you all make a big difference in our days.

Wednesday, January 7, 2015

A lot going on recently 01/07/15

Happy New Year everyone!

First post of the new year is unfortunately not a wonderful one.  Tom's platelet count has been dropping over the last few weeks and on Friday the 2nd he spiked a fever in the afternoon.  We took him in to the infusion center and they were concerned about the dropping platelets and lack of other presenting symptoms with the fever, so they moved his scheduled bone marrow biopsy up by one week.  They had mentioned that if his platelets had began to recover in the meantime they would hold off on the biopsy until the original scheduled date because they would assume it was all attributable to an infection.

Tom took it easy the rest of Friday and then Joe came down to help tom out Saturday-Sunday.  We had a great Saturday evening down at Pearl and Anthony's for game night and the fever seemed to have subsided.
Sunday around lunch time Tom had a pain in his left side by his rib cage that went from a slight annoying pain to a crippling one in a matter of 20 minutes or so.  We went to the ER and spent the afternoon to early evening there and the generous Jennifer dropped by to deliver us some much needed food since we didn't end up making it to lunch (sorry Joe! We swear it wasn't an extreme way to get out of it! haha). The docs did a chest X-ray and non-contrasted CT scan thinking that the pain sounded like possible kidney stones.  They took blood labs, urine sample, the whole 9 yards to check for any kind of infection.  It all came back clear and while that meant no kidney stones or infection, they said that meant it could possibly be a leukemia relapse. They told Tom it all just came down to pain management for the time being and sent us home.  Tom was concerned about what would happen when the pain got too bad again and they told us to simply come back. We got home around six just in time for my mom's arrival (she came to keep Tom company for the week) and Tom took it easy with lots of pain meds.

At about midnight Tom's pain level got intolerable again so he took some pain meds and waited a bit. When that didn't help we called the ER and headed in again and were there until about 4:30 am getting home just before 5am.  This time they mentioned that earlier's CT scan showed an enlarged spleen and they decided to do a CT with contrast.  It came back and basically just showed that the spleen was still enlarged.  The doc on duty at that point said that he figured that's what was causing all the pain and that unfortunately since they weren't seeing any possible infections or causes, it was possible it could be due to relapse but that the only next step would be to do the biopsy on Tuesday and for the time being just try to manage the pain.

Tuesday came and we went in for Tom's doc appointment.  His platelets were 58 the previous Tuesday, 38 on the Friday, 28 on Sunday afternoon, and 26 when we went in at midnight Sun-Mon night.  Tuesday his platelets had stabilized and not gone up or down so that's good, right? His hgb had also gone from 15 something the previous Tuesday to 12.7 on our midnight ER visit and this Tuesday were back at 13.3 I believe... so that must be good too.  So while the docs are very concerned that there is a high possibility of relapse, it may still be possible that there was some kind of virus or infection that caused the drop in counts and spleen enlargement.  Tom's pain level is still present, but nowhere near as intense and when it is intense it's not for long periods of time he says... so that must also point to the spleen lessening in size... though I'm certainly no doctor, just a worried wife desperately looking for alternative answers.

Due to the high level of concern, the doc has apparently "made a phone call" to get the biopsy results back sooner than normal so we will receive them on Friday and I will have a much shorter blog update for everyone.

Thanks for hanging in there with us, rooting us on, praying for Tom, and keeping us always in your good thoughts and intentions.  Please keep your fingers and toes, thoughts, prayers, and well-intents going for results to be clear of leukemia and for this to have just been something else that he's already kicked.

Also on a side note, Tom's bday is the 22nd and he'll be a whopping 28 so let's hope he's able to ring in this next year with good help and lots of fun ahead. :)