Monday, October 29, 2012

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!

Wednesday, October 24, 2012

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.

Monday, October 22, 2012

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! 

Thursday, October 18, 2012

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".

Wednesday, October 17, 2012

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, October 15, 2012

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. :)

Sunday, October 14, 2012

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.

Saturday, October 13, 2012

"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!

Friday, October 12, 2012

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!!!

Thursday, October 11, 2012

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!

Tuesday, October 9, 2012

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


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

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

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!

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!

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

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!!!

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!


August 2012 Emails

August 2, 2012
Hello everyone!

This update is brought to you by: a joint effort of Tom and Laura's perspectives of toms Tuesday.

He had three rounds of chemo, the regular twice a day and the spinal one which Tom said the doctors found him amusing as he could feel it shooting through the nerves of his legs. Tom also nearly held a record for amount of consecutive time for hiccups, what's more... Out of all the procedures Tom has had in the last week- it would be these hiccups that would make him start with the foul language!

The nurse did give him some Ativan for the hiccups and it relaxed him so much he slept through night. This morning he told the nurse, "whatever concoction she gave me last night- ill have that again!" This morning (currently) is Tom's last dose of the chemotherapy drug, cyclophosphamide. At 9pm tonight he starts a new kind of chemotherapy drug, which Tom says should be interesting as he hasn't had many problems with the one he is finishing.

We have also been told that there's a guy down the hall about toms age who has a different form of cancer, but is on his last round of chemo and happy as a clam. He has said Tom is welcome to come down and chat so that's exciting.

I think that may be all =)
Laura and Tom


Tom began his Adriamycin last night (or the "brown bag" as the guy down the hall referred to it as he forewarned of its qualities). Needless to say it has wiped Tom out, his counts are low (as expected after this drug) so he will have a couple of days off of chemo to restore before restarting.

He has been put back on protonix which is an anti-anxiety/nausea pill which also protects against ulcers, apparently it was an oversight as they had him on other drugs of the nature instead... But he's on it now so that's good.

In the world of good news, tom received the results back from his bone marrow test today and he does NOT have Philadelphia chromosome which is present in 1/3 of patients who originally test for acute leukemia. Philadelphia chromosome is a genetic mutation that makes a form of chronic leukemia appear to be acute leukemia...but we are clear so woohoo!!!

My mom and youngest brother gave a little visit today which was nice. Helen (toms mom) and Alex (brother) are out with a cold so they aren't allowed in at the moment which is a bummer and a half. David (toms dad) arrives tonight for the weekend so we look forward to his visits.

They have got Tom a new bed that's longer however he is not so excited about it, says its "an instrument of death" (those words just came out of his mouth as I was typing). Things aren't so exciting in this place for poor Tom and now he must wear a mask to venture out so we have called upon joe to hook up toms playstation 3 during his visit tomorrow.

Right, well we wish you all a wonderful weekend!!!!
Laura and Tom

Poor Tom had one heck of a rough weekend. They say the first week is the worst so let's cross our fingers that it's true. Quite the visitors this weekend :) a few of Tom's coworkers stopped by on Friday, Tom's dad came for the weekend and a good old visit from the Hazards. Joe also came down and hooked up toms play station in the hospital room, though he's felt too crummy to play.

Tom also received a new laptop via grandma and grandad Danielson so he can watch some shows and films as well as journal and keep in touch if he pleases, he's very excited about that so thank you to the two of you! X

This morning he was scheduled for his
intrathecal chemo however his platelets were not high enough so he got out of it this morning.

Hoping for an easier week he only has two treatments scheduled so that's a little less daunting. Tom went for a walk this morning as well so the edge is coming off from that last chemo.

Stay tuned for future updates of Tom in chemo. Coming thru email to a computer near you.

Love from both of us!
Laura and Tom

Hello all!

Yesterday's chain of events were certainly not dull, unfortunately a bit worrisome for poor Tom.

To begin, before Tom's intrathecal chemo, he sent me out to ask for some Ativan to help with nausea and as an anti-anxiety he'd be able to relax during the procedure. The nurse came in and after injecting the medicine, Tom almost immediately said, "Ativan has never made my head go so funny." the nurse just went about her stuff and left, Tom went to his procedure, etc. when he returned the nurse came in and told him she hadn't given him Ativan, she had accidentally gave him dilauded (also known as hydromorphone, a derivative of morphine).

During the spinal tap (intrathecal chemo) Tom had told the guy that the last two times he's done this they've had to use a six inch needle as the four inch is not enough. In disbelief the guy carried on, only to take side X-rays to find out that he wasn't reaching the area due to requiring a larger needle, such as Tom had suggested. Tom was less than thrilled about this one.

Lastly, in the afternoon the same nurse as the morning blip had hung up a bag of magnesium into toms IV and had properly set it for the two hours; However, something went wrong with the machine and the bag pushed its entire contents through in less than a minute! Tom felt immediately sick as he could feel it pumping through and when he called for the nurse they could not see what the problem was or why the machine had done that. Later the same bit had his saline in it and kept beeping for air in the line so we kindly asked them to get rid of that and stop using it as we are sure had the magnesium been chemo, it wouldn't have been good.

Aside from that toms had some bad headaches and nausea. His white cell count was 1 (or 100 really) on Monday, 600 yesterday and 500 today. So they said we are moving in the right direction, so that's good. If everything goes according to plan he may get a weekend off to be home in a couple of weeks. :)

Hope everyone is well!
Tom and Laura

Hello all!

Not a whole lot to report today. Overnight Tom had two bags of blood given to him and got very little sleep due to the amount of monitoring they had to do with that, alongside the very sore throat he was developing.

This morning they began Tom on some Rituxan this morning which they warned us can result in a reaction in some people which displays itself in rigor shakes- so they "closely" (I use that term rather loosely) monitor you for the first hour. An hour and fifteen into it Tom had the reaction they had mentioned, which resulted in having to end the treatment and receive some demoral to help his muscles relax as they were all seizing and shaking and his teeth chattering away uncontrollably. About an hour and a half later they restarted him on the rituxan but on a very slow drip and we're just waiting for it to finish up so he can have a shower and then start his chemo treatment for the day, vincristine.

Tom also had a very swollen and sore throat this morning to where he could barely speak or swallow any water, but with some medication he was able to eat a sandwich and he's had some carrots, watched some Sharpe and is feeling much better. So the day took a turn for the better. The vincristine tonight should be the last chemo for the week. Hooray!

That ought to sum up the day really. Doctor said the white blood cell count was down to .3 so not very many circulating around in there, but that is exactly what we're going for! He said tom is staying right on track and while he's on vacation tom should "keep it boring" for his colleagues... (it was about five minutes later when Tom began the rigor shakes and Dr. Colbourn came in and said, "Now this isn't keeping it boring!").

Hope everyone is well!!!
Tom and Laura

Hello Everyone!
Nothing too exciting, hence the lull in updates. Tom finished his last chemo for the first round a few days ago and is now just playing the waiting game. At the moment he is scheduled to begin the second round 8/20 and so long as his counts please the doctors, he may get to come home again for the weekend before beginning chemo again next Monday. Helen is busy cooking away to make Tom a "Sunday dinner" complete with Yorkshire puddings and all.

As far as the counts go, Tom has to have his ANC (absolute neutrophil count) up to 0.90 before they will let him go home. Neutrophil cells are the infection-fighting white blood cells that for the last four days haven't even shown up on our count board but today they have come in at 0.2 so we are headed back up!!! Tom's normal WBC (white blood cell count) is at .4 (up from a three day lull of .3), his hemoglobin count has been steadily rising and without receiving any blood transfusions, Tom has gone up .2 to bring it up to 10! (His hemoglobin was at 7 which is really low being that it should be around 14, when we were originally admitted). His platelet count has gone up four points as well to be 32 (on 8/6 his platelets were a measly 13, so this is great because he had received platelets for his intrathecal chemo and as expected they lowered, but now they're increasing on their own).

So what does this all mean? This means that the first round of chemo worked to knock his white blood cell counts down to next to nothing and his body is actually beginning to reproduce what we hope to be healthy cells!!! SO things are going as expected, tom's direct instructions from the oncologist is to simply keep things boring for now to ensure a return home before the next round.

Hope everyone has had a lovely weekend!
Laura and Tom

Hey all!
What an outstanding outpour of love and support we have had from so many people! Thank you and you all know whom you are! We feel so lucky!

Today Tom has been a little bit bummed (a little bit of an understatement), as all of the nurses over the night and this morning told him that he should be okay to go home today (two days early) since his counts have been going up, he's avoided infection and is feeling good. Doctor's decided nope and that aside his counts weren't quite where we were told they should be to go home. His ANC level is only to .67 and we want them at least to .90 and his hemoglobin actually dropped to 8.2 so he had to receive two units of blood which automatically made him commit to staying one more night because it takes awhile and they'll need to re-test his blood levels in the morning after receiving the blood. Nonetheless, probably a good thing to top him up before sending him home for a few days. His overall white blood cell count has made it out of the decimals and is at 1.2 so woohoo! Platelets also went up to a whopping 37! So, still a bleeding risk though since that is still considered rather low.

When he goes home this weekend he will be confined to the house because of still being neutropenic (highly prone to infection), but he's got some bad cabin fever and would like to be in the comfort of his own home before committing to a few more weeks when he starts the second chemo round on monday. That said, while we love the visitors, we will want to keep it to as much of a minimum as possible, while at home this weekend, since Tom is so prone to infection.
As soon as we are re-admitted on Monday I will be sure to send out an email to update everyone as to what new room he is in.

Thanks again everyone!!!

Hello Everyone!

Tom is officially back in the hospital for round two of chemo. He is actually in the same room as last time (173) to which his response to the nurses was, "You couldn't have managed a change of scenery?" And to think we had packed up and brought all of his stuff home on Thursday! Tom also remarked that he's seen other rooms in the ward with better televisions. In any case, he's full of sass and wise remarks so his weekend did him some good. He has narrowed down that the headaches he has been having are only from sitting up (as opposed to laying down, standing or walking). So we think it could be from one of his intrathecal procedures and possibly has a pinched nerve or something that may be agitated when he sits. Dearest Helen has supplied him with a lifetime supply of Yorkie bars and Ribena, perhaps this will help combat the record breaking weight loss plan that he has been on.

Other than that, he stuck to the specific instructions to "keep it boring" so there isn't a whole lot to report. He enjoyed a weekend of his favorite foods, time with his dog and Sharpe... which has also made it's way to the hospital room. With his spirits sailing high (probably from all of the drugs, joke) if you would like to drop Tom a note, feel free to do so.

In other news, Helen leaves on Thursday, we are currently accepting applications for her temporary replacement until she returns. Please contact management with your application and resume.

Keeping you posted, wishing you well-


Hello Everyone!

The Not So Favorable (my attempt to not say bad)
Yesterday Helen left back to the UK which has been even more difficult than anticipated. Tom had a bit of a rough day yesterday as he received four lots of chemo in 24 hours and one of them was the intrathecal (spinal) chemo. He was actually sick yesterday afternoon which is really something they absolutely try to avoid. The awful headaches that he's been having, when he sits, they have attributed to leaking spinal fluid from one of his intrathecals that must not have healed properly (which is nothing to be alarmed about, it just happens I guess). Because of this they did a "blood patch" today which is when they take blood from his arm and put it around the spinal area hoping for it to heal over and solve the headache problem. We should know by tomorrow if it has worked, unfortunately he is bedridden again today while it heals. Two days in bed due to spinal procedures makes for a rather stir crazy, back aching and grumpy Tom.

His spinal fluid from his intrathecal chemo has come back clear of leukemia again! After next week's intrathecal he will be halfway done with the intrathecal chemo's. Secondly, Tom should get to go home on Sunday for two weeks before round 3. He is scheduled to return to the hospital on the 9th of September (incidentally when Helen will be returning for a few days). From now on the oncologist said he will be doing sort of two weeks home, one week in, two weeks home, etc. This should last for 24 weeks. After that he will be in his maintenance phase for 18 months and that bit is all through outpatient so it must be a less invasive chemo that doesn't require him to be in for days upon days hooked up. This was refreshing to hear! Though Tom wasn't too thrilled to hear the 24 weeks bit (but 2/3 of it is at home!). Kathy (my sister, for those who don't know her) has volunteered to spend the weekend with us so that Izzy has a friend to keep her company at night now that Tom's mom has gone back to the UK.

We received a nice surprise from the Kirbys today :) Thank you!
Thank you mom for driving Kathy down... and here's a premature thank you to Kathy for the muffins she promises to make!
Hope this email finds everyone well!
Tom and Laura


Hello everyone!

Today we got to go home! Tom isn't feeling up to par but he's happy to be home. His headache problem seems to have been sorted out with the blood patch they did for him. So thats some good news! The nausea and whatnot that he's feeling is considered normal after five days of consecutive chemo but his numbers were where they should be and the oncologist seemed pleased, minus pointing out that he could see toms anxiety! Tom said that everything was cool and the oncologist called him a liar, teasingly of course.

This upcoming week while he is home, he still has to go in for a shot tomorrow, some rituxan Wednesday as well as an intrathecal chemo. The rituxan is a chemo enhancing agent, it coats the bad cells and allows the chemo to target them better- it's also what caused the bad case of rigors tom had but apparently that only happens the first go around. He had a second dose of it this past week and was fine so we expect no hiccups there. I think that at the moment thats all on schedule.

David (toms dad) will be coming in for labor day weekend on Friday! So we are looking forward to that. Saturday is also my birthday so I am thrilled that we are home and not in the hospital!

Special thanks to my mother for bringing Kathy down to dogsit Friday-today for us and for picking her up! Muchas gracias! Also, thank you Kathy for spending your weekend with our dog! Lastly, we got a nice surprise from John Green and Jess Wade today! A little package containing a super cute card, the card game UNO (one of my faaaavorites! Tom will need to learn it) and some of Tom's favorites, airwaves! that was a great way to end the week!

We hope everyone has had a splendid weekend!
Tom and Laura