Tuesday, November 27, 2012

Home, Christmas, and The Plan

So we've been home a few days now.  Tom's feeling pretty crummy, upset stomach and some various pain, though the doctors have run tests and everything is good... just remaining side-effects of the chemo.  Poor guy.  We have a day off from driving down to Sacramento today, yes!

He's been receiving the neupogen shot (an artificial booster for production of white blood cells), so his counts had been skyrocketing up and then when he reached 4.0 (the bottom of the "normal" range) they didn't give him one (Sunday).  So, yesterday's counts were down a bit (which is normal when getting neupogen) to 2.8, so they gave him another injection and tomorrow he will have another lab draw to see where he's at.

In the meantime, he's feeling rather tired and sickly.  We're trying to stay on top of it with the pantry of medications he has.  Of course, it's hard to get some rest and feel better when there's a construction crew outside your window demolishing the outside of your apartment.  They're rebuilding the patios that were almost seriously crumbling before our eyes, so while that's reassuring... it's rather annoying.

Also, they show up at 8am sharp.  While we shouldn't be still lazying in bed; After a tough night's sleep, seeing a man through your vertical blinds working around your sliding door... is a bit uncomfortable.  Luckily, they were as "closed" as possible. Two to three weeks, that's what we're told.  May possibly be moving into the spare room.

In other news, we got our Christmas tree up! It's our first Christmas tree, ever!  So exciting!  Technically, when immuno-compromised, they say not to have any live plants due to the bacteria, etc.... but technically, Tom won't be there for very long and I think it's sort of livened the spirits a bit.  The holiday's can feel almost as "normal" as possible... thanks to our well decorated tree!

Down to business:
  • Alex has his marrow matching test tomorrow
  • Dr. Carroll has made the order to start preliminary searches on the registry
  • Tom is booked in for Tuesday to do his marrow biopsy to check on his remission status. 
I think, that's everything!  Time to go return Tom's stuff to his work (as he's no longer officially employed there) and then I've got to go get some food for our house! We've been away too long!!! 

Friday, November 23, 2012

Lego Mania, Hospital Release, and Marrow Matching

TOM IS GOING HOME TODAY!!!!!! we'll be let go around 2pm after Tom receives his daily antibiotics (they're intravenously delivered). 

Somewhat of a downer, Oliver was deemed not a match.  Alex is due to have his blood drawn on Monday so we should know in a week or two whether or not he is.  He has been reassured by the professionals here that if Alex is also a negative, we should have no problems with the registry.  While they seem sure it will all work out, it was still a bit of a bummer.  Keep your fingers crossed that Alex is a match.

In other news, we have quite a lot of stuff to pack up... afterall, I'd prepared for a 3-5 week stay and it's only been 2 1/2.  Of the tons of stuff to pack, here are some photos of the lego castle that Tom has been working on... he'd appreciate it if I let everyone know it's only about "half way" done.

So, now everyone knows that I've married a giant five year old and also what might make for a good Christmas present for Tom this year to keep him busy for his marrow transplant stay.  Legos seem to be something that's simple enough to not cause headaches and over-exertion from focus (which becomes difficult when he's drugged up in the hospital), but interesting enough that he enjoys doing it.  That's the justification behind what you see here.

Hope everyone has a wonderful weekend!

Tuesday, November 20, 2012

Tom's Status... Neutropenic Fever, Again.

With Tom's WBC count being at 0.0 for now seven days, they had been expecting him to have a fever at some point.  When the body is neutropenic it's susceptible to infection much more so than normal, in fact, the normal bacteria/fungi in the body become a threat with no white blood cells to keep them at bay.

In the past, Tom has had both e.coli and a VRE infection during neutropenia, but we were home when both of those infections started and were told not to go to the hospital until his fever reached 101.4 ... which meant that by the time we usually got there, he'd be like 103 or so and it'd be that much harder to get it down and would take that much longer to get antibiotics, etc. 

Luckily, we're in the hospital this time around and because they were expecting it, they were ready as soon as it got into the high 99's they were waiting and when it got to the 101.4 they had the antibiotics ready, tylenol ready, cultures drawn straight away... so it hasn't passed 102.  That said, he's still been battling the fever, bad headaches, hot-cold swings, etc... and he's also come up with a red spots on his hands and arms (which hopefully the doctor will have answers about here shortly). He was sick after breakfast yesterday morning and only ate half of a slice of toast the rest of the day.  This morning he braved a piece of toast with lemon curd and ate all of it but part of the crust (which was apparently just too toasted).  Yesterday, he didn't really leave the bed, this morning he went for a little walk in the hall, but he's still feeling super crummy.

Today's Counts:  WBC 0.0    Hgb: 8.8    Platelets:  17    
He will definitely receive platelets today and he's hoping that he will get blood (though his parameters are set for less than 8.5 to receive blood, but he gets headaches anywhere below 9.5 so he's asked if they'd make an exception).   He's been receiving neupogen daily since 11/12 and that's supposed to stimulate the white blood cell production, so hopefully when it starts to go up, it will rise quickly.

My mom heads down today to keep Izzy company so I can stay here and she'll be making us Thanksgiving dinner! Hooray!

Hope everyone is enjoying their week!

Things to be Thankful For

This week is Thanksgiving and while I feel there is one large thing that I feel I should be rather unthankful for... in the spirit of the holiday, I should reflect on the things I am thankful for.

Things I'm thankful for:
  • Our incredibly loving and supportive group of family and friends.
  • Our parents whom do everything they can to help us out as much as possible.
  • Tom's friends and family for their amazing sense of community in pulling together to help raise money for our impending medical bill doom.
  • My family for coming down and making Thanksgiving dinner for us.
  • My incredibly awesome neighbors, who have been taking care of Izzy for us so that I don't have to drive back and forth to let her out.
  • Our awesome friends who spent two hours sorting out their son's legos, so that Tom could have the requested black and grey ones.
  • A reliable and somewhat gas efficient car to drive the over 1,000 miles that I've driven in just the past two weeks!!!!!!
  • My grandmother who sends me surprises in the mail, like books on dog psychology and wonderful Starbucks cards.
  • The "girl time" I was able to have last week, a lovely day at the museum!
  • The fact that we live in Northern California, which is a wonderful place to be if you're in the position we are... as far as healthcare. I am so grateful/thankful that science has come so far and that there isn't just one place, but a few that are cutting edge and capable to ensure that my husband is going to make it through this.
  • I am thankful that I work (or worked, rather) for Starbucks and because of that, I am enjoying a delicious cup of Thanksgiving blend brewed from the Family Room at the hospital... it's delicious.
  • I am also thankful that this company (Starbucks) gave me lots of stock over the years and it's helped us quite a bit: a couple years ago it paid for our wedding, last year it paid for our move, this year it's going to help us through this awful time. Thank you Starbucks!
  • I am thankful that this hospital has a "family room" in the bone marrow transplant ward, where we can store and cook food to make it feel more like home... and get out of his hospital room.

I am sure that I could go on and on, but the point is: Even when things seem super awful, there are ten times more things to be thankful for... and that's what we should celebrate. 

Happy Thanksgiving, Everyone!!!!

Wednesday, November 14, 2012

Lego Madness

Today Tom's WBC has reached 0.0 and they've been giving him neupogen shots the last three days (to boost the making of his white blood cells) so hopefully they will rise sooner as well.  On Monday, Tom asked Dr. Carroll when he should expect to go home.  Dr. Carroll said, "two weeks"  to which Tom responded, "Great, I'll be home for Thanksgiving!"  Dr. Carroll responded, "Thanksgiving is in ten days."  Tom's response, "fourteen days, ten days, I'll be home for Thanksgiving."  The nurse we just spoke to said that most people hang out at 0.0 for 7-10 days so he will be cutting it close. 

As far as Tom's appetite goes, he is still having a difficult time with foods that are very aromatic-they make him instantly sick, so many of his hot entrees he must leave in the hall while they cool down.  On top of that, the chemo is known to destroy the lining of the GI track, so it's common for a person to develop mouth or throat sores.... Tom hasn't developed those two, but has developed sores and inflammation lower down in the esophagus, which creates great pain when he swallows even water.  This is all quite a shame, as his actual appetite is quite healthy, he wants to eat and is eating, but there are just a few barriers.  Currently, he is now having them give him dilaudid (hydromorphone, a semi-synthetic morphine) in order to eat.  Brilliant.

On another note... a more pleasant one, Tom was visited by the massage therapist yesterday.  He gets a massage apparently every Tuesday and Thursday.  He seemed to really enjoy the foot/leg massage he got yesterday and says that he is really looking forward to the full back massage that's due Thursday.  So, it isn't all bad.

Oliver's received his marrow test kit and hopefully Alex will receive his soon, so with any luck we shall know in a few weeks as to whether we have a sibling match.

Tom's handywork with the lego's yesterday.  Fully functioning with some functioning gears to move, lower, etc.  Pretty impressive. 
So in summary, esophagus pain, extreme boredom, WBC at 0 and some lego... that's what's been going on here.

Monday, November 12, 2012



Neutropenia is an abnormally low level of neutrophils in the blood. Neutrophils are white blood cells (WBCs) produced in the bone marrow that ingest bacteria. Neutropenia is sometimes called agranulocytosis or granulocytopenia because neutrophils make up about 60% of WBCs and have granules inside their cell walls. Neutropenia is a serious disorder because it makes the body vulnerable to bacterial and fungal infections.

Medical Dictionary has more on this subject if you feel curious and want to know more.

Today, Tom's levels officially hit the realm of "neutropenia" which they consider a person if the WBC is less than 2.0.  Tom registered in at 0.7 and had a slight moment of celebration.  The sooner his counts go down, the sooner they go up (in theory anyway).  In discussion of this, Dr. Carroll asked Tom what English foods he missed most and then proceeded to tell him about an English pasty shop in town, of which Tom cannot eat from until out of the neutropenic zone.  Doctor says it'll probably be two weeks before Tom can come home, Thanksgiving is 10 days away and while the doctor doesn't think Tom's counts will rebound so quickly... Tom is certainly convinced he can.  

His appetite is doing well, minus the fact that anything with an aroma (so anything hot) must remain outside of the room.  We've been able to come up with a few foods to leave in the family room kitchen that are good on demand.  

Today my mom is coming down to stay two nights and three days so that we can have a break of running back and forth for Izzy.  Looking forward to that.  Today Izzy and I had a rather long walk in a nature preserve area, where she decided November aside... it was still a good day for a swim.  

For those who may want to give Tom a call or something to ease his boredom, the bone marrow transplant unit phone number is: 916-733-8945 and he's in room 4320

I think that may be all to really report for today.  Hope everyone is well. 

Saturday, November 10, 2012

Bread thief...

Today was Tom's last day for chemo.  His counts have already shown a decline which is good.  This regimen has made him feel pretty crummy and in particular, in the mornings. He seems to be okay more in the afternoons which is good, makes him able to eat. 

His "expected" discharge date is 12/07, though he seems rather insistent that he will not be here that long. As mentioned, it's begun a decline in his counts, so today he is receiving two units of blood.  From here on out, he just has to sit and wait and in the meantime not contract a secondary infection.

Not really anything to crazy to report, just thought I'd announce that he's made it through the chemo and now it's just the waiting game.  Hoping that in the meantime, one of his brothers will test as a match and keeping our fingers crossed that this chemo puts him into remission.

We had a nice visit from Louie, Kelly, and Ernie.  Louie and Kelly have brought Tom a stuffed companion leopard to keep him company from the Build-A-Bear.  :) 

After our visit, I went into the "family room" where this a fully "equipped" (yet VERY outdated) kitchen where you can store items and cook food, etc.  I had brought in some things today so that I could have some of Tom's staples readily available... one of these things was a full loaf of bread for bacon sandwiches.  When I opened the cupboard, my labeled loaf of bread was nowhere to be found.  I thought, "maybe someone put it in the refrigerator", yet that was a no.  Turns out, one of the patients was discharged today and when his wife was packing up their food items (they'd been in a month), the nurses assume that she probably took the bread. 

I had also made a batch of chocolate chip cookies this morning to leave for whomever in the family room to eat.  Now, either A. I'm a better baker than I think I am and people couldn't put them down  or B. Bread Thief is also the Cookie Monster.  

Anyhow, hope this gave someone a smile for the next time make some toast. :P

Hope everyone is doing well.

Wednesday, November 7, 2012

The New Regimen

There is no official name for this particular regimen, it's sort of a custom tailored regimen for Tom (though approved also by the UCSF doctor). The nurse we have tonight is telling us how incredibly thorough Dr. Carroll is and gives very high marks for him.  Seems to think that he's quite good at finding the best concoction.

When on the Hyper CVAD regimen, Tom would usually feel almost too good until about day four.  The particular concoction Dr. Carroll has come up with, has made him feel rather lousy straight away. Tom's contribution to how things are going consists simply of, "lots of puking."  He says he's back on the Chemo Diet Plan... destination goal weight probably by next week.

The other slightly bummer news as it were, is that the menu here is the same as the one at Sutter Roseville... meaning Tom finds nearly everything repulsive.  The upside, they've supplied him with a list of alternatives so he may create his own planned menu... and cake is involved.

Perhaps the most disappointing news is that both David and Helen had to return back home today.  Always a sad day when mom and dad leave, though being sick all day I'm sure was of no help.

On a "brighter" note, he's nearly completed day two of five! 

Tuesday, November 6, 2012

From Chaos to a Semi-Plan


The Plan:
Cancel the "second opinion" appointment with UCSF
Have Tom admitted to Sutter General for 9:30am
Have Oliver typed to see if he's a match
Go on about the day.

What Actually Happened:
Cancelled that "second opinion" appointment.
Arrived with all of our things ready for a few weeks in the hospital
Called to tell the lady that Oliver was present for the typing
Were told that the insurance wasn't covering anything to do with the transplant at said facility.

From There:
Spent a good while calling the insurance to figure out what was going on.
When the lady told me that Sutter wasn't coming up as a covered facility, immediately I called UCSF back in desperation and begged for our appointment back.  In the meantime, we were called in to see Dr. Carroll (transplant specialist for Sutter General), so poor David had to be thrown onto the phone with the lady from UCSF.
We arranged with Dr. Carroll, after explaining the situation, that we would begin Monday.  We didn't want to begin a chemotherapy that would possibly make it to where we couldn't go to UCSF down the road if Sutter couldn't attain authorization from our insurance. He agreed, but UCSF couldn't get us in until Monday, because now it was no longer a "second opinion" but an actual consultation for possible care at the facility.

Yesterday (Monday), we went to UCSF, met with Dr. Damon... who we both seemed to really like.  He specializes in leukemia and lymphoma (like the Dr. here), has had a hand in some leading research and is on the board that decides which regimens are suitable for leukemia treatments. That said, he seemed to be the man to speak to.  He looked at what we'd been doing, as well as what we have planned to do with Sutter General, he said it gets his seal of approval. That said, he told us due to the facilities at UCSF not having any beds to offer, and Sutter General being a place that does transplants so they'd be familiar with the planned chemo regimen, to go ahead with the chemo at Sutter and then:

a. if we so choose, based on the experience that we research Dr. Carroll having, go ahead with the marrow transplant at Sutter General. As they have attained authorization for care, it was just a large misunderstanding and the authorization came through an hour after we'd left.
b. if this chemo regimen does not put him into full remission, consider it two strikes and come to UCSF and try the MOAD regimen and then from there continue on for a transplant.
c. if after our experience and research into Dr. Carroll's expertise we just decide that even if in full remission after this chemo we'd like to do the transplant at UCSF, go do the transplant at UCSF.

Our Plan
Is to have Tom do this chemo here at Sutter.  No matter where we do the transplant, we will have to move closer to the facility, so given off our experience thus far in consultations... our gut reaction to plan is that we do the chemo here (as suggested by UCSF) and then move to San Francisco for the transplant or further chemo (if that is needed, but lets hope not).
During the time of this chemo, we will be having Tom's brothers both typed to see if they are a match, this process can take a few weeks.  If not, they will find a match via a registry.

So there it is folks.  In the meantime, I will be driving to visit him at Sutter General in Sacramento (about a half hour if no traffic), and hopefully packing up a bit for whatever move we end up making.

Thursday, November 1, 2012

Meeting with Dr. Carroll

Yesterday was our meeting with the transplant Doctor.  Seemed to go fairly well.  We were hoping to get a consult with UCSF, however they can't get Tom in until maybe tomorrow, however Dr. Carroll wants Tom to start treatment Friday.  Given that Tom still has some leukemia cells in his marrow, it's important that we don't waste time and get him treated so that they do not reproduce.

Disclaimer: Warning! This blog contains A LOT of information! Read at your own Information Overload Risk!

The Plan

Tom's to begin this new regimen of chemo Friday.  It's for five days, however unlike the chemo Tom's been doing... it's much stronger so it will require a 3-6 week hospital stay.  In that time, we are typing his brothers in hopes that one of them is a match.  If they are not, they automatically utilize a donor registry.

We have had an amazing response of people willing to donate marrow (which by the way is simply giving blood and you do it at a lab locally to you); However, marrow typing and donating is much more complicated than blood typing, as simple to give, but finding a match is much more intricate.  He said that a match is about 1 in 1 million.  With having two brothers from the same parents, there is about a 40% chance one of them will be a match.  Uncles, aunts, cousins, parents, are much less likely and will most likely only come up as half of a match at best, he said... which is definitely not good enough.  Dr. Carroll was saying that when utilizing the registry, people of English (British isles in general) decent, have a much more likely chance of finding a donor than any other ethnicity. Apparently the match will also most likely be some far distant relative (thought that was interesting and sort of made more sense as to why typing all of our friends and family isn't likely to yield a match). So that's the shortened (believe it or not) version of why even though everyone is so willing and selflessly offering to come to our aid, we can't accept.... I saved you the chromosomal 6 explanation... you're welcome, ladies and gents.

Anyhow, after this first chemo thing, we are hoping that he will be in full remission (please enter that into your thoughts and prayers... TOM IN FULL REMISSION) and if he is... we just have to hope that we have a donor lined up.  The perk, aside from similar immunity, of having a sibling be a match, is that they will be much more compelled to get it done in a timely fashion... apparently with registry donors, it can sometimes take up to two months to get the marrow stem cells.

SO if we have a donor lined up and ready to go and Tom is in full remission after this new round of chemo... we will do the transplant straight away.  This is another 5-7 weeks in the hospital.

If we are awaiting a donation, they will do more chemo to keep it in remission.  If he didn't achieve full remission with the first round of chemo, we will also do another round of chemo until he is.

After the transplant... after the 5-7 week hospitalization, he will be discharged.  At this time he will need someone (and they specifically said this) with him 24/7 which means that I certainly will not be going back to work.  Secondly, suggested that we would need a backup caregiver (taking applications if anyone is interested), so that I can go grocery shopping or go out or whatever... as he cannot be left on his own.

For the year or so following this transplant, he will be closely monitored for rejection as well as relapse.  As far as relapse goes, it apparently happens within the 6mo-1year after the transplant.... if you can make it past 2 years of close monitoring and finding nothing, you're cured. That's right, cured.  If a relapse did occur, sometimes they will infuse a very small amount of the marrow stem cells again to initiate what they call Graph vs. Leukemia to get rid of that last remaining stuff.

To Clarify
The chemo regimen that Tom was on before, Hyper CVAD, there is a 20% chance that it won't work (as it hasn't)... it doesn't mean that there's anything worse about Tom than someone else or that there is no hope.  Secondly, chemo for ALL (tom's leukemia) is usually most effective in children as far as curing them.  Though superficially it's the same disease.... young children (ten and under) vs. teens and adults with this disease, it's very different.  Young children often obtain a cure through chemo with ALL, however most commonly now, adults have bone marrow transplants... and if they do not, there is about a 40% chance of relapse through doing chemotherapy alone, and often times it's then too late for them to do the marrow transplant.  So seemingly, we are now on the correct track.  There is still a small chance that this may not do the trick, but then we take train c..... which he didn't tell us what that is, but hopefully we won't need to cross that bridge.  So that's what brings us to doing the transplant.

I think that this basically covers everything discussed in our consultation yesterday.  So Tom begins this process tomorrow.  Again, a big giant thank you to all of those who so willingly offered to come to our aid and donate if need be.  :)