Short and Sweet

We're HOME!!! 

It was a tough week.  This chemo really does a number on poor Tom.  Doctor expects that he'll be fine through Christmas, just experience some nausea most likely (to which he has every med for).  Expects that it will be sometime later next week when his counts will crash that we may see him end up in the hospital again with a neutropenic fever or some kind of infection. He prescribed another antiobiotic though to keep things away.

I'm sick, which is lovely.  So we're both laying around in separate rooms feeling awful.  This is definitely a somber Saturday.  Apart from that though, Tom's happy to be home... as am I and I'll be especially happy enough when I'm well enough to sleep in my bed without worrying about infecting Tom.

Anyhow, we hope everyone else has had a wonderful pre-Christmas weekend!  

A Quick Update

So it's Friday which means Tom has his last three chemo meds tonight and should be discharged in the morning.  The doctor took him off of compazine (a nausea preventing pill) because ironically enough Tom couldn't keep anything down.  Instead he's on an IV push of haldol and benadryl giving one of the two every three hours. While this switch to these has seemed to help significantly with the nausea, the flipside is extreme fatigue. Tom is losing the battle to stay awake and it has been very frustrating for him as it then leaves him not tired enough to sleep at night.  So there's that.

In other news, it appears that they have about 12 possible matches that they're examining to choose the best three (to leave room for some backup options if option no. 1 doesn't come through).  Because it is the Holiday season, Dr. Carroll expects that getting in touch with people and getting things done promptly, is highly unlikely to happen.  His prediction is that these delays will make for Tom having to do another four day maintenance round in 5-6 weeks and then the next time he will come in will be transplant time. So that's good, a plan.  That's pretty much everything we have to report!

Have a wonderful weekend!

Maintenance Chemo

Interesting week so far. Tom was scheduled to begin chemo on Monday. While he has achieved remission, it's necessary to do some chemo until they have a donor lined to ensure that he remains in remission.  So, Monday was the day.  We arrived for about noon at the doctor's office and we were there for about two hours while they did his labs and he checked in with Dr. Carroll, then we were brought to his room in oncology (on the plain Jane ward this time, not the bmt unit).  He had his vitals done and then at about four the nurse came in and said she had no idea he was here!  No big deal, busy day, but Helen and I left for home around six-ish and a ways down the freeway we get a call from Thomas, "turn around" he says.

Apparently the hospital was out of one of his chemo drugs. Out of chemo! So we went back to get him and we were told it'd be in for Tuesday or Wednesday, they had to locate some from another facility. Yesterday was then the big day.  We were told to be in for three and when we arrived the pharmacy had called and said if we weren't in for four, they weren't going to mix the chemo.  Well we were for three and they didn't start chemo until nine! Something to do with transport.

Anyway, all underway. His first night was a rough one... Very sick.  Resting now, thanks to a rather large quantity of drugs I think. Expected to be released Saturday and so long as he can keep from any fevers, he should be home for Christmas.

In other news, David was supposed to arrive Friday and was actually able to be here this morning!

Counting down for Christmas! Will try to keep everyone posted on any developments here in the hospital!

More (disappointing) Results

Alex's results came back as a negative.  There was only a 40% chance that one of the two would be a match, so the doctor had already ordered that they start looking on the registry just in case.  We are assured that Tom should have no problems given his ethnic background, so that is at least some form of relief.  At least out of the two results to come back this week, the one we really needed came back with great news (Tom being in remission).  There's no other big news to really report, Tom goes back in for some maintenance chemo on Monday.

Today Tom's mom, Helen, arrives from England. So we will be headed to San Francisco to pick her up this afternoon.  David arrives the day the world is supposed to end (the 21st) and hopefully Tom will be getting released that day as well :)

Tom would like to add that he's a bit disappointed about neither brother being a match, but that all things considered we're headed in the right direction.

The Best Kind of News

Ladies and Gents,

Your good efforts whether they be prayers, happy thoughts, hopes, crossing of fingers and toes, whatever they were... you've done well.  Tom's biopsy last Monday yielded no leukemia ... yes, you've read that correctly, no leukemia!!!!!  Go on and read it again if you like, it's still true! We are absolutely elated to have received such news!

After the previous biopsy's crushing let down, we went in with absolutely no expectations. Nearly cried with the overwhelming joy (but don't worry, we were too cool for that).  The oncologist told us that the pathologist looked rather discerningly and found absolutely no suspicious cells!  That said, here's what comes next:

While Tom is in remission, the battle is far from over.  If things were functioning normally and responding normally, Tom should have been in remission in August.  That's why he has to get a bone marrow transplant. Because with chemo alone, even if remission were achieved (like it has been) the chances are very high for relapse.  So, they achieve remission and then go forward with a marrow transplant.

Oliver was already determined as not a marrow match.  Alex did his test last Monday, so the results ought to be in any day this week. Whether Alex comes back a match or not, it can still take near a month to coordinate things and get the sample collected, etc.  Due to such a time frame and the rather high possibility that Alex is not a match and they will need to find a registry donor, they cannot waste any time and need to make sure that they maintain Tom's current remission.  This means that he needs to do the same chemo as he did last month, but one less day worth and without the long stay.

Tom mentioned his mom's arrival on Wednesday and asked if he could wait until Thursday to go in.  Dr. Carroll said, "Let's do Monday" so that Tom could spend the weekend with his Mom.  So, he goes in Monday for five days (assuming he does not get a fever while in the hospital) which in turn means: Tom will be home for Christmas!!!! Sure, he will probably be feeling rather awful (as his counts will then be crashing at home rather than in the hospital) but he'll be here to celebrate the Holiday!!!!

As for the actual transplant.  If Alex is a match, Tom will have to re-cooperate from this chemo he'll be doing next week and they will have to collect the stem cells from Alex, so we're looking at mid-late January. The same to be said if Alex isn't a match, but they are able to line up a registry donor quickly.  If neither of those are true, they will do more maintenance chemo to retain remission until they do have something lined up.

When things are lined up and ready to move forward with the transplant, they do a different chemo.  This other chemo is so strong that it completely wipes out Tom's marrow and immune system, but unlike the current and previous regimen, the marrow doesn't come back.  So, they absolutely cannot do this chemo until they have the donor's goods lined up and ready to infuse, as there's no returning Tom's system.  The actual "transplant" is like hanging a bag of blood (but stem cells) and takes about 45 minutes.
They then have Tom stay in for about 5-7 weeks as he recovers and they monitor for anything crazy.  Upon discharge, he will have to go into the hospital every morning for a few months, to check his levels and adjust his anti-rejection meds (to prevent graph vs. host).  If things are good and he attains 100% the donor's marrow, they will begin to slowly let him off the leash.

So, we aren't across the finish line yet, but we have made one gigantic stride in the right direction.

Happy Monday Everyone!

Busying the Mind

Suggested by the social worker, we've taken a trip to Santa Cruz to visit family and friends to get our minds off of the biopsy and marrow matching results.  Tom still feels a bit wiped out from the chemo he had, but his intake of medicine to help is lowering, so I suppose that's a good sign.

The doctor's office says we can expect to be back in for chemo on Tuesday or Wednesday, we have an appointment Monday for the pending results and will find out then.  What kind of chemo depends on the results. If Tom is in remission and Alex is a match, it will probably be the ultimate  chemo (that's used to wipe out his entire marrow and immunity...there's no going backward they have to be transplant ready). If he is in remission and doesn't have a match yet, it will be a lower key chemo strictly to just keep him in remission until a match is secured.  If he is not in remission, they will do another round to get him there. So, a lot of possibilities in the air.

In the meantime, we are going to do our best to keep busy and otherwise minded.
Have a wonderful weekend!

Fingers and Toes Crossed, Everyone

So, Alex got his bloodwork for the marrow typing test done today, hopefully we should get the results next week or so! Good vibes, thoughts, prayers, fingers and toes crossed, the works- send them this way in hopes that Alex is a match!

Tom is also getting a bone marrow biopsy today, to check where he's at remission wise. All of those things listed above, channel them again for Tom to be in remission which means he will be transplant ready! He's rather nervous, understandably, so they're drugging him up.  After the procedure it's back to the waiting game for a few days to a week, for the results.

Short and sweet, keep those fingers crossed!!!! Hoping for good news in the near future!

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!!! 

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!

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!!!!

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.

Neutropenia

Definition

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. 

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.

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! 

From Chaos to a Semi-Plan

Friday:

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.
or
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.

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.  :)

Ultimate Case of "The Mondays"

So today we received the results from Tom's bone marrow biopsy that was done last week.  As many remember, this was going to be the deciding factor as to whether or not we go forward with chemo or if we go to a bone marrow transplant.

It pains me to inform everyone that while the odds were in our favor (as we were told), they unfortunately did not pan out that way and Tom will be having to do a bone marrow transplant.

To explain: After the "induction" phase of chemo (the first two rounds), he was expected to already be in full remission, but a bone marrow aspiration showed 10-15% residual leukemia cells in the marrow (when they obviously expected it to be 0).  Granted this was down from his initial 90%, which is what led the oncologist to hope that another two rounds of chemo would knock that last bit out and put him into remission.  IF it came back with maybe 1%, he said we would go ahead with round five and check again... however it has come back with a 5-10%.  This means the chemo has not been successful in reaching remission and to keep going could actually cause damage to the marrow.

Going forward, we have a consult with the doctor our oncologist recommended for a transplant at Sutter General on Wednesday.  We are still up in the air as to whether we will choose to go for a second opinion at UCSF, mostly because of the treatment and transportation.  Not to bother everyone with that information, but there ya go.  Monday we have scheduled to do the very intense five day chemo plan for pre-transplant and hopefully find a marrow match in the next couple of weeks.

We will keep everyone posted.

Light the Night Walk

Saturday night was the Leukemia and Lymphoma Society of Greater Sacramento's Light the Night walk.  Great success, I think!

For starters, we had about 30 people for our team come to the walk, which was fantastic!  Our neighbor who has a bbq smoker and caters for a living, catered a bbq for us on the house... because they're just that awesome! It was super  delicious!  We raised over $2400 and funds that were turned in that night haven't yet been recorded so good job Team Decimate!!!!!!!

Apologies for the lack of quality in the photos... our camera battery wasn't well enough for a flash and we asked a stranger to take the group ones.  Was really hoping for a team photo with the capitol building in the background, but it wouldn't work. Anyway, below are some photos, starting with Tom's dedication page in the Remembrance Tent. :)

It was a really fun event, we sadly lost a few members during the walk, but Jo, Vaughn, Louie and Kelly were definitely all present at the walk... and poor Caitlyn got sick before the walk and had to miss out, but did join us for the pre-fesitivies. :)  It was a great night and we hope to do it again next year.

THANK YOU to all of those who made it possible; by donating, walking, cooking, t-shirt making, etc.... thank you for making our team a success!

Weird Wednesday

Tom's been stable since Monday, his counts have gone from WBC 0.5 Monday, 1.9 Yesterday, and above 4.0 today... which means out of neutropenia. Tom is ready to fly this coop.  However, he has just been informed that the blood cultures have grown enough for them to figure out what he has and it is unfortunately resistant to the antibiotics they've been treating him with. So while he may be feeling better, he may not be allowed to leave until they can secure him on the correct antibiotics to make sure that it doesn't come back.

As it turns out, he has a gram-negative infection called VRE (Vancomycin-Resistant Enterococci) ... vancomycin being one of the antibiotics he's been getting treated with. here is a link to some information on the bacteria. 

After doing some reading, it appears that this definitely explains much of what was happening and what he was feeling.  That said, his counts have all been on the rise to normality, he's out of neutropenia and for the most part, he's been feeling pretty good. Sounds like it's something that can be picked up (most commonly in hospitals or chronic care facilities, or some people have it in their systems without infection).  The doctor says that just about anything can happen with chemo and a person's counts getting so low.

The only thing he has seemed to be struggling with is sleep.  He's been a bit worried about what results from the tests they've ran might yield.  Monday was the bone marrow biopsy, yesterday he did a cardiac test (because when he was running extremely low on blood and platelets and running a fever, he had some rather irregular blood pressure and heart rate readings), and first thing this morning he had a PET scan to check in on the progression of his treatment.  So, when Tom says he didn't sleep last night, he quite literally means it.  At 3am we were up walking laps in the ward because he couldn't fall asleep, even despite how incredibly tired he was.

Dr. Reddy came by and said that the preliminary results on the PET scan show everything clear.  Said it looks like he may have some risdidual business in the lungs from this infection he's fighting, but that's all. So that was a lovely weight off of the shoulders.  Said Tom will be able to go home by Friday hopefully after treating this VRE and that we should have the marrow biopsy results by then. So things are looking good. Also said that Tom will most likely have another week or two off to finish the antibiotics for this infection before he starts cycle 5.  

In other news, Helen arrives today :)  Alex will be picking her up this afternoon from SFO so we hope to see them probably around 5pm.

In Other News : Fundraising

A big THANK YOU  to "Team UK" as it were!  Family and Friends (as mentioned in a previous post) held a fundraiser on Saturday, "A Coffee Morning", in which they raised  £1600 to which will help in paying for Tom's treatments that aren't covered by the insurance.  Should the insurance pay, all monies will be donated to the UK Leukaemia Research (notice difference in spelling ;P). I just have to say a big WOW in terms of turn out and amount donated and a really big THANK YOU to all of those who were involved and helped in organizing, donating, etc.  Incredible!

On this side of the pond we are gearing up for the Light the Night walk this Saturday! The walk is a fundraiser for the Leukemia and Lymphoma Society (LLS), specifically this walk funds the Greater Sacramento Chapter. We have raised $2,000 for the LLS and look forward to seeing our friends and family for the walk! Again, thank you to all of those who have donated (near and far) and to those who will be keeping us company during the walk and festivities! 

It's really refreshing to see how wonderfully giving humanity can be at times.  We are so lucky to have such a lovely outpouring of support from our friends and family.  Great job to everyone involved and again, Thank You!!!!

Monday and Worthy of a Post

Hope everyone's weekend has treated them well.  Unfortunately for us, Tom failed at following the "keep it boring" instructions.

This means that on Saturday, Tom was brought into the ER and treated for sepsis (their fancy word for, "we don't know what kind of serious infection you have, but you have one").  Six hours in the ER and then we were admitted into oncology around 11-11:30pm, where they spent the entire night trying to get control of his fever.  The highest it got to was 103.9 (39.94C for you non US folk) and after much deliberation, consideration of an ICU stay, ice packs on the body and some tylenol, he finally dropped into the 99 range around 6am and they were able to give him the platelets and blood he needed. 

Yesterday he remained in the 99 range and then very slowly decreased, received two more units of blood in the evening/night and reached the 98 normal range in the middle of the night and has remained.

Today they said they were able to get a "gram positive" read on the blood cultures they drew on Saturday.  So he indeed has some sort of bacterial infection and they are treating him with antibiotics that target that specific range.  He already looks a lot better, residual headache but he seems to be holding well and his blood counts this morning showed that he responded to his transfusions.  The last time this occurred was Sept 2nd when he had e.coli ... which when he said they told him his cultures were gram positive I asked the likelihood of it being e. coli. 

The nurse told me that e. coli tends to be the culprit quite a bit.  She also said that these secondary infections that bring chemo patients in tend to more often than not be some sort of bacterial or fungal agent that is normally present in or on the body, but with compromised immune systems, the body just gets over run with them.  That was comforting, not. In any case, he seems to have responded quite well and quickly.  Saturday-Sunday night was a rocky patch, but it all worked out.  Hoping to be home soon. 

On another note, he is currently down getting his bone marrow biopsy done.  They were able to fit him in today, so he doesn't have to wait until Wednesday to do it now and will hopefully have results sooner as well.

Hope everyone is keeping well! 

Topping Up Tom

Tom went in for a simple top up on blood today.  Takes a few hours so he's actually currently receiving blood.  We hope that this should help him shake the dizzy spells he's been having when he stands up and make him less fatigued.  In theory it should do the trick.

Tomorrow he just has a simple lab draw so we will know if the blood helped boost him up a bit and hopefully his ANC (absolute neutrophil) and WBC (white blood cells) levels will be on the trend back upward. With them being low we are in for a quiet weekend, but with Helen arriving next week, a bone marrow aspiration next week and the Leukemia and Lymphoma Soceity's Light the Night walk next weekend... a quiet weekend may just be what's needed.

Getting excited for the walk next weekend! It will be great to see everyone and we are very grateful to all of those whom donated!  It's a worthy cause and a wonderful group.  Maybe the dollar to find the cure will be floating around in there.

This coming Saturday, Helen (Tom's mom), family members and some friends of Tom's will be hosting a "coffee morning" event to raise some money to help us pay for the insurance denied Rituxan.  If the insurance decides to be nice wonderful people of rational capacity and do decide to repeal their denial and cover it, the money will go to support the Leukaemia Research UK.  Below is the flyer for the event. =)  For those in the UK.


So there's that for now, we hope everyone has a wonderful weekend and we shall keep you posted should Tom decide to do anything crazy and end up back in the hospital... his instructions, however, clearly to state to "keep it boring".

Blood Count Victory

Went to see the Oncologist for Tom's general 4 week check up.  Tom's having what seem to be headaches due to his intrathecal chemo (the lumbar punctures).  Because they are still unsure whether this weekends hospital stay was due to a "chemical meningitis" (ie. caused by the chemo), they cancelled his last intrathecal chemo for this week and have moved it to the next cycle.  Tom was hoping his platelets might still be high enough today for them to get it done and over with so that they don't do a blood patch to alleviate the headaches and then re-puncture it in two weeks time.

Needless to say, his blood counts came back showing an ANC (absolute neutrophil count) of 0.0 and a WBC (white blood cell count) of 0.2  ... therefore he is most definitely neutropenic which means he is housebound, no sick people allowed, and needs to be extra cautious food wise. That said, we probably won't be having any visitors for a couple of days, just to be careful.
As far as the intrathecal goes, they won't do the procedure with less than 50,000 platelets (due to risk of bleeding) and Tom was at 23,000.  Which is totally okay (they don't worry unless it's just a tad bit lower), he just has to be weary of not doing anything that could cause bleeding.
Lastly, his hemoglobin (red blood cells) levels require a blood transfusion which he will receive tomorrow afternoon.

Before anyone gets too worried, this is all 100% expected and good! We want the chemo to bring him down this low and hopefully (cross the fingers and toes) it means that the remaining 10% of leukemia cells in the bone marrow will be killed off.  He was given a neulasta shot on Saturday which will help his body to reproduce and bounce the counts back up much faster than on their own.

So, we were happy to hear his counts hit the bottom. :)  We are also celebrating Tom being half way done with his chemo as of this week!!!! Hooray!!! So here's hoping that these last two rounds really did the trick and send him into full remission.

Until Next Time!

Monday. A New Start.

Well, Tom is definitely feeling a heck of a lot better.  He says yesterday morning he felt like death (and he certainly looked it).  By yesterday early evening he was able to eat and retain, his headache had subsided quite a lot and he was able to get some sleep.  This morning he is feeling pretty darn good.

He was scheduled to go to the infusion clinic today (given that he was supposed to be home) to receive Rituxan (the drug that enhances the ability for the chemo to target the correct cells... the same drug the insurance doesn't want to cover), but they're going to go ahead and give it to him in the hospital instead.  Other than that, there isn't much going on today. We shall see what Dr. Colbourn has to say, as Tom thinks he could probably go home today, but obviously it's up to the doctor.

So, a quick turn around and hopefully it stays. Happy Monday, everyone. :)

Back in again

So we are back in the hospital. Dr. Colbourn was concerned about the headache and nausea which I guess are possible side effects of meningitis. The chemo "even" chemo rounds (which Tom just completed) focus on the brain area and though it's not possible to "prove" it's possible to sort of get a chemical meningitis so that's why we are treating for.

They're getting him some pain meds and nausea meds and then will treat with some antibiotics and steroids and he says usually steroids clear it up (but just in case it's something else, theyre going to use antibiotics as well).

They said we did well by calling and coming back in. Dr. Colbourn didn't want to give an estimate as to how long we will be in, so for now here's hoping he feels better soon.

"There's No Place Like Home"

Tom was released from the hospital today and while normally that means for most people that they're feeling pretty good; Unfortunately, for Tom, he gets released at the point where he's just starting to feel his worst.  In any case, he at least gets to be sick and uncomfortable in his own bed, rather than having to share his pain and discomfort with everyone else in the ward.

He has some chemo in the outpatient center this upcoming week, which will include his last ever intrathecal chemo, woohoo!!!!!  So, he is definitely looking forward to that.

It was supposed to be a surprise for Tom, but given that he'd had some rather upsetting news this week, we caved and told him: Helen will be coming out for two weeks on the 22nd! We're also hoping that David will be able to join us the weekend of the Light the Night walk.  Though Tom has a bone marrow aspiration a few days before the walk, we're hoping he will feel good enough to participate.  If not, we are happily accepting volunteers to maybe push him the two miles... anyone training for the strongest man competition?

Hopefully Tom will keep these next couple of weeks "boring" as Dr. Colbourn likes to put it.  The last time he got this cocktail of chemo was when he ended up in the hospital with E. Coli.  They've lowered the doses this time, but we will have to make sure he plays it safe.  That said, there probably won't be many "blogs" over the next two weeks, as I'm sure that no one cares to know what T.V. shows Tom is watching while he lays in bed or on the couch. ;P

We welcome those who want to skype.  Just send us a message and we'll make sure to be in (though we'll only be out if he has something going on in the outpatient center)... which is MWF so Tuesdays or Thursdays are good.  :)

Until Next Time!

A bit like the weather... gloomy

 61* and Overcast :(

Tom's not feeling too good today.  Under the weather from the chemo, his back is hurting and spasming and so the hospital bed is a bit annoying to him.  He's got up to do his laps and stuff, but all around he's feeling a bit down.  Monday's news just has him and everyone in a bit of a rut.  It will be nice to get some good news after his marrow biopsy at the end of the month.

 

Tom was really hoping that he could go home today, but Dr. Colbourn said he's never had anyone's methotrexate levels lower fast enough for a Friday discharge.  His methotrexate levels should be low enough to go home tomorrow, which isn't soon enough for Tom. If anyone has any funny jokes, feel free to share them with Tom to brighten his day up.  Which reminds me, you should be able to leave comments at the bottom of each little blog. 

On a brighter note: we are #11 for most fundraised for the Light the Night Walk and my wonderful coworkers have donated their tips to our team as well so I'm hoping it will put us at #10.  Less than three weeks to the walk!!!

 

 

Hospital Sweat Shop

As one can imagine, Tom is rather hardwired.  I choose to refer to it as being, "fully accessorized".  He has his picc line coming out of his left arm and a port that has been implanted into his chest on the right side.  For those who know Tom, he doesn't really find the hospital gowns to be of "high fashion" and even more so, not so comfortable. 

Upon readmittance this time around, Tom was wearing a zip up sweatshirt and he realized he could have his port accessed without having to wear a gown and run the tubing in odd ways out of a sleeve.  The hangup was that the sweater then didn't allow access to the picc line as the sweater was long sleeved. Tom's frustration of t-shirts allowing for picc line access, but not port access and the sweater allowing the opposite, led to a stroke of genius.

Tom realized he needed to have a t-shirt (for comfort and day to day wear) that had a possible opening wear the port is located for access of tube lines and dressing changes. This led to us buying some t-shirts from Michael's and some sewing materials.  We both had differing ideas of what this shirt should look like.  Tom's idea involved cutting out a hole and then utilizing velcro and a patch to cover the hole, but allow access when needed.  My idea involved cutting an area, but creating it more into a flap and utilizing a button. 

My prototype is done, however due to Tom not feeling too well, he has ended up asking me to finish his and then we plan to have him model for the nurses and take a vote.  So watchout everyone! We may have a hot new product to hit the fashion/cancer treatment world!

On the serious note: Tom is feeling "drained and a bit sickly" though he's up and around. He's still feeling a bit anxious from Monday's poor news.  The oncologist said that on the poor news note, the odds are still in his favor.  Tom says that luckily all of the nurses find him amusing and chat with him frequently.  He's made a couple of friends with either patients or family members of patients.  He's done a good job at being up and a round this time rather than in bed watching TV.  He had a nasty back spasm today, but seems to have recovered after getting some drugs.

On the chemo note, he only has one dose of cytarabine tonight at 6pm and then he will only be given Leukovorin which isn't a chemo drug, it's used to lower the methotrexate levels from the methotrexate chemo he had earlier in the week.  Once his methotrexate levels are at or below 0.02 he will be allowed to go home.  Hooray!

The News and Hospital Recreational Activity

The Jist of the news:

So Colbourn said that he personally has never had this situation happen (where the leukemia cells aren't at zero after the first two chemo treatments). However, it's not to say that it can't or doesn't happen.  He said that one of his colleagues in his office actually had a leukemia patient experience this within this last year and after the fourth round (which is what Tom is on at the moment), a marrow biopsy showed the levels to be at zero.  Dr. Colbourn says that given the 80% decrease after the first two, he sees no reason that the next two couldn't drop the remaining 10%. 

IF for some reason there is no decrease, or very little, we may need to discuss "option B".  Dr. Colbourn is currently doing his research and contacting academic colleagues for their opinions in order for him to devise a plan b if it were to go there.  Of course he has also said that if we don't see the results at zero and round five doesn't do anything, then he will send us to get our own second or third opinion, talk bone marrow transplant, etc. and then come back to create our plan of action.  All of this bit is under a big gigantic "if" and just in order to be prepared. 

What's really important to stress is that Dr. Colbourn is expecting this round and the previous round to do the trick.

Tomorrow (Wednesday) is Tom's intrathecal chemo, but he was able to get it with the lady who seems to have an easy time and leave him without the headaches afterward.  Also, this round of chemo will be his last two intrathecal chemos!!!! It was confirmed by Colbourn today, so no longer assumed, but fact. :)

The More Light Hearted Recreational Activity:

Tom apparently did a few laps around the ward and decided he'd walked a long way. So he took the time to calculate how far a round was and how far a mile would be, to just be disappointed that all the walking he had done only equated to less than half a mile.  He has determined that thirteen laps equate to a mile... and possibly extreme diziness after going around that many times.

While racking up some laps, we decided to stop by the conference room and see if there was anything good going on.  We attended an oncology nutrition class last night and tonight we decided to pop in on a cancer support group... though Tom was kicked out once someone else other than us showed up, as it was apparently solely for family and friends. 

Thus Begins The Blog

Welcome to The Leukemia Log

As I am not the world's most tech savvy sort of person, this form of communication was recommended by many in the beginning. I of course thought, "I can barely email, how will I set up a blog?" I also thought that it may be difficult for some folks to get their updates this way, but in certain cases, I will just send the link when there's a new one (that's my sort of plan anyway). Turns out that I can't even email, as half the time my email decides to just not include certain addresses I enter. So here we are, we shall see how I do. The other positive aspect is that you won't all be bombarded with emails from me, you may solicit information on your own time.

I will figure out how to put in all of the previous emails as well, so that if anyone has missed one or more or perhaps would like to share with someone else, they can have access to them all. I shall make a plan to at the very least, have a new update up every Monday, but it seems that his inpatient stays tend to have a little more excitement than being at home on the couch, so those weeks might have a few extras.

Right, to start. Today is 10/09/12 (that's 09/10/12 to those of you in England). We had a bit of some bummer news last night and hopefully we will get more of a clearer picture today. Dr. Colbourn (the oncologist) told Tom that his bone marrow aspiration last round yielded 10% leukemia cells. While his first bone marrow biopsy during his diagnostic week July 26th yielded 90%, we apparently expected this last one to yield zero. Dr. Colbourn said that they will do another one after this round and if there's anything left we will have to talk about some more serious alternatives. I shall have more for everyone on what that means after we talk to him today. Keep some positive thoughts up!

September 2012 + 10/8/12

9/01

Hello everyone! Today is my birthday! Thank you for the birthday cards, wishes, prezzies, etc. Tom seems to be having a good day so far. Yesterday was a bit of a doozie. Nothing bad happened, just sort of a large inconvenience really.

We went in for Tom’s standard lab draw and Tom mentioned to the nurse there that he was still having the excruciating headaches from the intrathecal chemo on Wednesday. He simply let her know that the pain meds he has work for things like an aching back or slight headache, but they do not help the intrathecal headaches and he just wanted something that would. The infusion clinic called the on-call oncologist (our oncologist is out having surgery during the duration that tom is out of the hospital and will be back when we go back in). The on-call oncologist said to send tom to the emergency room to get another blood patch to seal the spinal fluid from leaking and causing the headaches. The ER would be the quickest way for him to get one of these. What this doctor failed to do was check Tom’s labs as they would have indicated that Tom not only had nowhere near the platelets necessary to not put him at risk for bleeding, but his white blood cell count is back down to .1 which means the last place Tom should be sitting is in an ER full of sick people and potential contaminates.

Nonetheless, the doctor at the front counter saw the risk and understood Tom’s position and got us almost immediately back into a room so Tom could lay down and relieve some of the pain and also be out of the way of infection. This emergency room was packed! Some had mentioned that they had been waiting for six hours!!!! So we are very thankful for this doctor who saw us through. While in there they gave Tom some dilaudid for the headache and after getting his labs back that we’d originally been at the infusion center for, they also topped him up with some platelets (they were down to 19,000 and you need at least 100,000 to do the blood patch mentioned) and his hemoglobin (red cells) were down to 8.2 so they gave him two bags (Tom’s transfusion parameters call for blood once below 8.5 so he wasn’t too bad). Just getting some blood helped a little bit as well. He also got a bonus dose of dilaudid before leaving!

Today we started off with me making some delicious pancakes! Oliver arrived just before 8am, David got in last night as well. May go mattress shopping to find something that can alleviate the back pain Tom has (our mattress literally has very obvious indentations from where we each sleep) and hopefully make some of the headaches subside and his times in bed much more relaxing so that he can heal faster and be in comfort. Hoping that labor day brings us some good deals!

We hope everyone has the opportunity to enjoy the Holiday weekend!!!

Tom and Laura

09/03
Hello,
Tom is unexpectedly back in the hospital. He had an extremely rough day yesterday (9/2) and in the afternoon he had a fever of 102.3 which prompted us to call the hospital. We were received quite promptly into the ER where they drew some blood, contacted the on-call oncologist and arranged for him to be admitted.
Tom's levels for blood were even lower than they were when he went in to the ER on Friday and was given blood. However after a week of chemo it is expected for counts to crash quite low before beginning to reproduce again. His hemoglobin was at 7.4 though so he required some more blood and platelets. They gave him platelets and two units of blood last night.
His fever was up and down last night from 99.6-103 and it's crept back up from 99 to 101 again this afternoon. Poor Tom was very ill last night and in a lot of pain. His blood levels didn't come up quite enough with the two units so they gave another bag of platelets and two more units of blood today. Needless to say, he is very tired today.
Due to the fever meaning infection of some sort, he is on antibiotics and antifungals, etc. On the larger bright side, though they haven't 100% cured his pain, they sure do have a heck of a lot stronger stuff in here than we are allowed at home!
Now we just need this fever to leave us alone so his counts can rise and we can get him a blood patch to make his head stop hurting!
Aside from this bump in the road, I had a nice birthday Saturday... At least we were granted one alright day the last few. :). David has left back to Canada and Helen will be with us next week for five days.
Thank you to Bo and Jamie whom though I missed them, evidence of their stop was left behind with some car magazines for Tom and a bday card for me :)
We hope everyone has enjoyed their labor day weekend!
Until next time,
Laura and Tom


09/07
Let me start with a large sigh (of relief at this point). I am so sorry to keep everyone waiting all week, luckily I think we had for the most part a good phone tree going. Where to start, perhaps where we left off on Monday? So let us go to Tuesday.

Tuesday we had a rejoiceful morning as Tom’s fever was officially gone. Though he was still in quite a lot of discomfort (to say the least) at least the antibiotics had started to make a dent. I went home to have some breakfast, some coffee and make my skype calls. Upon parking back at the hospital, Tom called and said, “I’m going for a brain scan and I’m getting transferred to ICU.” I of course respond with, “When?! What the heck happened in two hours?!” Tom says, “Now and I don’t know.”

Of course there is an event happening of some sort and the only parking space is on the top story and I have several bags of stuff to carry in so I quickly park and throw all of my stuff on and run like a homeless person in a thunderstorm. I get inside and Tom tells me to set my stuff down so I’m not standing there “looking like a gypo” so I suppose we both had the same idea of what I looked like. They wheel him on down for the brain scan and once that’s done there is no nurse around and they just park him in xray until someone comes to get him. An ICU nurse appears after about ten minutes and is rather upset that he was left alone, his ICU room is not ready quite yet so he takes us back to Tom’s oncology room and we wait there while a battle of the nurses takes place as to who was responsible for staying with him during the scan.

Eventually we ended up in the ICU. While at first we weren’t 100% sure what got him there, after speaking with one of the oncology nurses, she explained that there was no single event that prompted the decision. Tom’s headaches had not subsided, he had a nosebleed while I was gone, his blood counts hadn’t responded in the way they’d like to see after multiple blood transfusions and they still weren’t sure what was causing the infection he clearly was battling. All of this combined, they felt the one-on-one supervision would be best until they knew what was going on.

Once in the ICU they got him started on some platelets and some blood. As soon as lunch hour was over, I went to the oncologist’s office to find out what was going on. Apparently our oncologist’s medical assistant was still on her lunch so after the receptionist said, “Oh he’s not back in the hospital is he?” and my response was, “He’s actually in the ICU!!” she said, “Oh, well what’s your number and I’ll have her call you as soon as she gets back.” I told her that I also just wanted to impart the events of the last few days and I said that poor Tom was worried sick, he thinks he’s on his deathbed and we need some answers. No one called me. At 4:20ish I called, afraid they would soon be closing office, and the person who answered tells me, “Well Dr. Colbourn is out until the 10th.” (In a very harumph sort of manner) and I responded in matching tone, “well my husband is supposed to home right now and he is in the ICU instead. Dr. Colbourn made it very clear that he would be available should anything go awry. I think that this may constitute that.” She then worriedly responded with, “Oh well let me call him and I’ll call you back.”

Within fifteen minutes, Dr. Colbourn’s partner was down in the ICU giving Tom all of the results that the phone lady had told me were not in yet. Winning! Especially given that his scans came back ALL CLEAR! Needless to say, Tom is a super-star and his ICU stay was a short six hours. That, ladies and gentlemen, was our Tuesday.

Wednesday, nothing had really changed minus that they were able to figure out that the “serious bacterial infection” was E.Coli. No wonder he felt so incredibly terrible. Knowing precisely what it was they were able to take him off the large amounts of general antibiotics and get him on the specific antibiotic needed. Literally by the next day (so yesterday) Tom was feeling so much better. His inflammation went down (which they said it would once they could treat the infection) and his body started to feel so much better.

Yesterday he was up moving around, doing laps in the ward to re-open his lungs a bit and get moving. He was starting to eat again. A total 180. His blood counts have really risen as well! On their own, even! His white blood cell counts were at 1.9 yesterday, his neutrophils were at 63% which Dr. Gowda said is really good. He was told that once the counts begin to rise they really take off and that we will be likely to go home today (Friday).

Tom is currently up and listening to some music. He is doing much better and feels comfortable going home so that’s definitely really good. Whether or not Tom will still be returning for his scheduled chemo on Tuesday, we are not sure. Apologies for how incredibly long this email is, but it has been one incredibly long week.

So, there you have it. We are hoping to go home today but it will probably be more evening time as we are sure Dr. Gowda will want to see him first and he is getting Tom a little top up on blood this morning. Hope everyone is keeping well!


9/14
Hello everyone!

The news for this week is that Tom was given a full reign on whatever he'd like to do. We've gone out to eat, he got his favorite (Togo's #8). He's been out and about, building a new fish tank venture. All due to having this extra week which allowed his blood levels to accumulate to that of a normal person's levels. It's too bad such clearance wasn't received Monday, but we'll take it! Helen unfortunately leaves again tomorrow morning. Tom goes back into the hospital Monday to start round 2A so we have a weekend left to live it up. He is also due for another bone marrow sample to check it's functioning levels and he will most likely also get his PICC line replaced upon re-admittance as well (he is not very stoked about either of these two things).

Luckily this is very short (that's a good thing for everyone, haha) due to Tom feeling so sprite. Hope everyone is doing well!

9/18
Hello everyone! Apparently my email has booted folks off of the list again, so I apologize for anyone being left out of the loop. I think I've solved the issue, so hopefully it's good to go now. Tom is in for this second "odd" round so for sense of ease we shall call it 2a. Today was the first day he had any kind of "chemo" drug, but he had some pre-meds and rituxan yesterday. He will be doing a lot of chemo over the next few days, tomorrow he has the intrathecal and on friday he is scheduled for another bone marrow aspiration to check to see that his marrow is functioning normally now. As imaginable, Tom isn't too stoked about either of these things.

Tom says he is bored, doesn't want to be in the hospital and is not looking forward to chemo tomorrow. That's what he has to offer toward his update. At least he is feeling good enough to be bored. He also adds that little things are making him mad today, he managed to injure himself while walking today (just took some skin off of his toe, nothing too major), he says knowing his luck he'll end up having to have his toe taken off. Enough from Sunshine.

That said, it's time I entertain him. Signing off for now,
Laura and Tom


9/21
Good Tidings!
Tom's week of chemo has been not so hectic as those in the past. They have lowered the dosage of chemo drugs, due to him having contracted e.coli after his last round and not wanting anything like that to re-occur. He is starting to feel the effects more now, he spent yesterday battling hiccups (which sound like no bother, but after a couple of hours they certainly make a person hurt a bit). A strange side-effect, but one nonetheless. A random fun fact, one of the chemo drugs apparently gets rid of keloid scarring, as one of Tom's keloid scars has disappeared! Yesterday Tom had to have his PICC line replaced, but it went much smoother than the initial installment, which was quite the relief for Tom. The nurses told him that his meds made him quite the chatterbox.
Currently, Tom is down having a bone marrow aspiration. Dr. Colbourn said he is at the point in treatment where they need to just take a small sample to just check that the chemo is doing it's job and that his marrow is beginning to function properly again. (cross our fingers). He is on his last bag of chemo for this week, but it's the awful 24 hour Adriamycin. This one tends to be the one that sort of knocks him down afterward. With Tom's counts having been so healthy upon admission, his counts as of yesterday were still in a good range (especially for him), so we expect that his "crash" will be while he is at home this upcoming week doing chemo through the outpatient center. It's been nice though as he hasn't been neutropenic while in the hospital, so he has been allowed to still eat whatever he wishes, which has made the stay a little more pleasant.

It looks as though his return home will be Sunday. Tom says he can't wait to be home and in his bed, poor guy. Through the course of this stay though he has been up and around, doing laps around the ward to get some movement and exercise... he even commandeered a wheelchair to "work out his arms" though I have a sneaking suspicion that was just an excuse to play with a wheelchair.

I will bid you all farewell for now, hope that you all are well and have a wonderful weekend!!!
Laura




10/08/12
Hello Everyone!

You know what they say, "No news is good news!"

It's been a long gap between emails, but for good reason- Tom kept it very "boring", hooray! We had no infections, no surprise ER visits or hospital stays, it all went according to plan. Today is re-admittance day and we are luckily scheduled to go in at 1 pm (which means Tom can accompany us in dropping David off at the airport). If everything goes according to plan this week, Tom will be home again on the weekend and be finishing out this round at home next week.

This round of chemo should also have the last two intrathecal chemo sessions!!! Tom is rather stoked about that, no more spinal taps! A bit of a light at the end of the tunnel there! We had a wonderful time off and this weekend we hosted Tom's brothers and his dad which was great fun! We also got to visit with our niece, Lily which was a great joy, especially for Tom who hasn't really had a chance to see her since last December!

The Light The Night walk is just around the corner, October 27th. Looking forward to seeing those who can make it! This will perfectly land on the weekend just before Tom goes in again, so as long as no unforeseen bumps in the road happen, he will get to participate!

That's the news and updates for now, we will keep you all posted through his in-patient stay this week!

-Laura