Wednesday, November 27, 2013

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!!!!!

Monday, November 4, 2013

Catching Everyone Up... Apologies.

Sorry, it turns out that working full time is quite exhausting and with Tom being in the hospital I just didn't get around to the blog.  WARNING! It's LOOOONG as much has happened in the last few weeks! (Sorry!)

 Here's the scoop:

Tom went to the doctor's on October 21st (Monday) and was told that the previous plan hadn't worked as the leukemia had progressed and was now visible in his blood. They said he needed to come in the following day for treatment and so he did.  He did five days of chemo and then a DLI which is a donor leukocyte/lymphocyte infusion (stem cell top up ... basically a miniature version of his transplant, minus the fact that they don't have him on any anti-rejection meds so the risk is a bit higher).

He was in until last Wednesday (30th) and they released him that afternoon.  That night, his heart rate was about 160 and his blood pressure was all over the map... he went by ambulance to the ER (which I'd just like to point out that I beat the ambulance ... driving legally of course... by about five minutes).  ER didn't know what to tell him as he stabilized and so after about four hours spent in there, they told us to go home.

He had an appointment with the doctor the next morning and was told there that he was going back in.  Due to the ER trip and apparently the fact that typically they wouldn't have let someone leave with a white cell count of 0.0 (but did), they wanted to monitor him through what they expect to be full of fevers and possibly graft vs. host disease (what they're hoping for).  He's not expected to go home until his counts rebound.  Saturday night he had a minor fever, but not enough to warrant blood cultures and starting antibiotics (he went to 100.2 and they do that at 100.4).  Today he had a fever of 100.6 so he's got that fever they were expecting and is on meds.

So that's, in a nutshell, what Tom's been up to.  Since we've been in there have been a few "hiccups" if I were to put it mildly.  Number one, on Saturday October 26th they came in to give Tom some blood (as he was low) what they read aloud was unwashed A+ blood... Tom is undetermined due to his bone marrow transplant, so he requires washed blood so that he doesn't have any reaction and he's on his way to being O- ... so when I asked the nurses to re-read it and they repeated what I'd thought they had said, I asked if they would go double check it because it wasn't correct.  I was assured that it was correct and that in fact the doctor himself had written such orders.  I told them that there was no way that the doctor would have written that and politely (as much as you can be in such a situation) asked that they go call and recheck because they weren't hanging it until then.  Guess what?!  It turns out that he was supposed to get washed O-!!!!! So Thank GOD I had stopped them as Tom flat out said he didn't want to "cause any trouble" so he wouldn't say anything! 

So they apologized and then a few hours later he got the correct blood as it takes awhile to wash the blood, etc.  As if that wasn't enough to get them on their toes and investigate how that occurred.... Monday night (just two days later) it was sometime between 11pm and 1am (an inconvenient time is all that matters, really) and the charge nurse comes in and tells Tom, "Hey, sorry, but it turns out that unit of blood we just gave you ... was the wrong blood.  Your nurse was about to hang the second unit and noticed it was incorrect and called the lab and they confirmed."  Half asleep I said, "Did you just say you gave him the wrong blood?!"  OH MY GOODNESS!!!!!!  Luckily it was washed and it was at least O type... but they'd given him positive instead of negative (for those who don't know... positive can receive negative, but negative cannot receive positive).  But due to it being washed, those antigens were not present (so we're told) and luckily Tom had no reaction other than his hours of complaining that he felt really weird and out of it.  SO, we proceed to tell this guy about the mishap the two days prior and he assures us they'll do all they can to "investigate" this matter, we discussed the SIX TIERS of personnel that blood must go through before getting hung and how NONE of them caught it (total system failure)... he assured us we would be kept up to date on the "investigation", etc.

Did anyone mention this mishap in the morning? No. In fact, it was the following day that he had his DLI treatment and no one discussed with us whether it'd impact it, etc.  After the DLI a staff member came to discuss the incident with us and called it an "oversight".  That's as much as we've heard on the matter.  Blood rant over.

Since then, we have been making a list of things that just aren't jiving around here.  One being that when he came back in they put him in a room so small that it wouldn't fit the portable hepa filter (which we'd been told was a must for him) so they just didn't put one in!  When I brought it to the nurse's attention, they moved us into another room.  They have been all confused and weird about his medications; Some let us store food, others throw it out. Some let us warm food up, others tell us they can't. Some ask Tom to turn off his pushed medicines on the pump, others act as if we've committed a crime. They ask Tom his "ins and outs" and then don't record it, so his nurse reviewing his chart thoroughly asks why he hasn't been to the bathroom in three days or why he isn't eating (when neither of these things are the truth).  He had a medical assistant come in last night come in multiple times to stock everything in the room (lights on, things thumping around), change things out,  and then (icing on the cake) wake him up at 4 am and ask if he'd used the bathroom, why he hadn't used the bathroom, said she'd bring things over for him to use the bathroom, would bring him drinks so he'd use the bathroom, etc.  Finally Tom said, "I just want to sleep!!!!"  He then asked for his nurse and requested that between 10pm-7am unless it's nursing staff doing vitals or meds, no one is to enter and wake him.

Those last few paragraphs are only a couple of bullet points on the list of reasons why we may be seeking treatment elsewhere. I won't bore you with the rest of the details... if you're still reading. Just adding this in here after taking a million years to add the photos at the bottom.... they just took Tom's temperature 102 something so looks like we're in for a long night.

On a much lighter note... below are photos from the Cleveland Light the Night Walk in which my sisters, their friend, and Madalynne took part to support Tom.  Followed by photos of the Sacramento Light the Night Walk.  A GIGANTIC Thank YOU to all of those who participated or donated! You guys made it such a success! Even though Tom couldn't make it, he worked very hard on it and was featured as an honored hero, so it means a lot to us the support we received!!! Enjoy!!!

PS. I will do my best to keep the update more frequent while hospitalized in order to avoid such long updates. :) 

Cleveland fun/support:

Team Cleveland Group Photo, thanks guys!!!!

Cleveland Walk 

Isn't she just darling? 

Team Cleveland <3
Kathy, Madalynne, Corinne, and Antonia.
Sacramento Fun:
Tom with the IV Therapy nurse who placed his new PICC line
Oliver and Tom having an afternoon jam session
 David retrieved Tom's picket so we could have it
 Emily, Helen, and Lilyana
 Helen with the Tom sign :)
 Myself and Emily
 Teri and me
 Me with the picket sign... isn't he handsome?
 Sacramento Team Photo! (Scott you're definitely hiding in the back!)
 Lily being a trooper
Scott and Teri