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



8/3

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

8/6
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



8/8
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


8/9
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

8/12
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


8/15/12
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!!!

8/21
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-

Laura

8/24
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.

The GOOD
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





8/24

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