Well today was a bitch. I guess we should have expected as much being that we are doomed. What should have been the start of our celebrations turned into a slap in the face and a big ‘ha ha ha, up yours’.
Scott’s counts fell again!!!! They were dismal last week but since there were lots of monocytes we had expected a rise and to be able to go ahead with Scott’s final dose of vincristine and prednisone. Instead we have to face yet another week of lockdown (due to Scott being severely neutropenic) and major angst as to exactly why his counts are falling.
His bloodwork showed a drop in all lines, red, white and platelets. The monocytes also fell. The only cells that rose were basophils to an astounding 8.9!!! These cells are an indication that the body is fighting an allergy and the normal values are between 0 and 2. The clinic told me that this is the highest number they have seen since last spring. Strangely though, Scott is showing absolutely no sign of allergies. So for the next week he is to take 2 different allergy medicines and we’ll see if this helps his counts next Thursday. I’m already teetering on the verge of being a certified window-licker so if no rise is seen next week I’ll be doing these updates from Bedlam (or the Tampa equivalent!).

Here is Scott at clinic today waiting for the nurse to draw his blood. He was feeling a bit paranoid about his double chin so this was his attempt at disguising it - spaz ....

Well, like I said last week, Scott’s bone marrow has had enough. This was seen again today when his blood work came back with a very low anc. Too low for chemo and too low for anything other than a lock-down for poor Scotty boy. It’s been a while since I’ve had to write about low anc and infection, but here we are again, Scott with no immunity and me with my Clorox wipes.

Sorry for not updating more often, I guess Im just sick of this whole malarky.

Scott’s bone marrow is scunnered. His counts today were okay but had actually dropped following his steroid pulse. He has had 35 cycles of prednisone now and this is the first time we have seen an anc drop. I’m quite surprised (and rather pleased with myself) that I’m not in meltdown mode, it doesn’t take much to tip me over the edge as you’ve probably gathered by now, but strangely I feel ok…calm even. In some weird way it feels like we have reached not just a chemical ending to this screwed-up period in our lives but also a biological full stop. So, not only are years of research and trials in agreement that we’ve thrashed the cancer the best that we can, Scott’s body is also saying, “enough, I’ve had enough”.

Scott had his second to last vincristine today; he also had methotrexate and starts back on the steroids (which were increased to 180mg a day) and 6mp nightly for two weeks. I had hoped for an anc increase since last weeks was low and boy did I get it. His anc was almost 4000. This is far higher than the doctors would like it to be but since his counts are fluctuating wildly an increase in chemo wasn’t considered. Scott’s anc is no longer following even a vague pattern as it did until fairly recently, Im not too sure if this is normal or not at this stage in the game, maybe he has developed some sort of tolerance to the methotrexate, I don’t know.
So we now face another bitch of a week but at least the light at the end of the tunnel is getting brighter. We do have a new addition to our pain fighting arsenal – Demerol – described to me as being Tylenol w/ codeine’s big brother. Hopefully it’ll kick ass and make life a little more bearable for Scott in the coming days.
As you probably know by now the steroids make Scott hungry. Well 2 weeks ago after finishing his steroid pulse he was weighed, and again today. I know he wont want me to tell you how much he weighs as he’s a little paranoid about being so chubby, but he weighed eleven pounds less today than he did two weeks ago. Eleven pounds in two weeks!!!! It’s going to be incredible to see that weight drop off in the months to come. He should also start to grow. In the last 25 and half months he has grown 1 centimeter, he currently measures in at 4 foot 11 inches and his brother (older by 2 years) is almost 6 foot 2 inches.
I have attached two links re t-cell and early t-pre cell leukemia. ETP is a newly recognized sub-group and holds a dire prognosis. Scott obviously was not a part of this study so we have no sure way of knowing whether he is actually T or ETP. I knew from Scott’s wbc at diagnosis (89,000 – high but reasonable for t-cell) and early remission that these are good indicators for successful treatment but this is not scientific proof in any way that he is T rather than ETP. Anyway, I raised this at clinic today with the doctor and was pleased to discover that he was up-to-speed on this study. He agreed that Scott was more than likely t-cell. This was good to hear yet still a 10-14% (depending on whether you go by St Jude statistics or the Italian study) relapse rate is cause for concern. When you think that we have been hit by something only 250 – 300 children in the US are diagnosed with each year you soon learn to never have the “well it wont happen to us” mindset again. A relapse is much worse than initial diagnosis, especially whilst on treatment or in the year following. Transplant would be recommended and in T-cell this is rarely successful.
Well that’s it for now. I gotta go give Scott his lovely strawberry flavored chemo and get some shut-eye. Goodnight, sleep tight.
http://insciences.org/article.php?article_id=2569
http://professional.cancerconsultants.com/oncology_main_news.aspx?id=43224

".. born of a jackal", actually thats a lie, but it sounds cool

On Sunday I officially became middle aged, shrivelled and crusty. Heres a few pictures of our little shindig:

I was 'flocked' by my freaky friends ...

Got a depressing birthday cake from my love, he also gave me spa treats (to help with the sagginess I spose) and best of all Godiva's chocolate strawberries ...

Derry pretending he like's lager, and yes I know they have rules about this sort of thing in the US but considering he's Scottish he's actually a late developer ...

It's my party and I'll sing if I want to ...

But then, disaster, Rock Band was commandeered, grrrrr, I hate sharing my toys ....

Sara, David, Derry and Sara ...

Brandon doing Billy Idol very, very badly ...

Ron and David who sings too well and wont ever be invited back ....

Sarah and David ...

Brittney and Ron (her dad) ...

Poor Leigh was harrassed into singing and was incredible ...

Cute ....

And another cutiepie (boy did I have to watch my langauge!) ....

Sara avoiding the microphone ...

Brittney and Derry ...

We even had a pinata ...

Thank you to everyone for the cards, gifts and for such a great day.

Sorry that I’m way overdue on my Thursday clinic update. I’ve just felt exhausted lately and instead of staying up late reading the news/caring bridge updates/blogs etc and writing something on Scotts page I’ve just been hitting the sack and addling my brain reading some toshy novel.
Anyhow, Scott is doing okay, not great by any stretch of the imagination, but okay. His counts last week were pretty awful but he got his chemo and we struck another week off. He has 2 doses of vincristine (chemo) left to take, 6 of methotrexate (chemo), 10 days of 165mg per day of prednisone and 28 days of 6mp (chemo). In 5 and a half weeks (unless he has any delays) he’ll have a bone marrow biopsy and a spinal tap and if they are clear then hopefully he can start on the path to recovery. Surprisingly I am okay about him going off treatment. Most parents aren’t, and I know that David is nervous; they feel anxious having the safety net of chemo pulled away, but I’m not as pissing-my-knickers scared as I thought I would be. It’s the next 5 and a half weeks and the end of treatment tests that are causing me to be a complete mess. I’ve never found the so called “new normal” (which is the biggest pile of crap phrase ever damn well uttered IMO) during Scott’s diagnosis and treatment. The nurses tease me mercilessly, yet kindly, about my regular meltdowns and how each week I give them the 3rd degree regarding his counts and symptoms. Hell they even know I have to knock back half a bottle of Pepto Bismol, a hot toddy or two and a handful of Xanax just to make it to clinic!! Anyway, what was I rattling on aboot? I’m not sure this is making any sense to non-cancer families or not? What I’m trying to say is I’m even more of a mess than normal but not worried about withdrawing chemo. You see, I’ve been digging deep and reading everything I can since this shit started and there are doctors out there who believe that t-cell leukemia is so aggressive that continuation therapy (the less intensive last year of treatment) is not strong enough to hold back a relapse. So by that reasoning everything Scott has received lately is not protective against a recurrence so stopping chemo is of no consequence. Continuation therapy (called maintenance in pre-b cell leukemia, the most common form of Acute Lymphoblastic Leukemia seen in 85 – 90% of cases) is most definitely beneficial, and maybe it is in t-cell, but it is a little controversial. So this is what I cling to and boy, I can’t wait to see the back of these lifesaving yet cruel and tortuous drugs. And whilst I’m on the subject, I will never ever forget those who have gone before us, the parents and children who bravely became human guinea pigs and forged, for children like Scott a path, and a good chance of long term cure.
Sorry for rattling on and thanks for checking in.