We've made it back home and actually Scott felt well enough (or was drugged enough) to stop by Cold Stone this evening.
As mentioned earlier, his counts were quite good. The spinal and bone marrow procedures went well - except it seems Scott tried to reach around and grab the bone marrow needle out of his back during the process - while under anethesia.
Doc Tebbi said his spinal fluid looked fine. It wasnice and clear. The lab reports on his bone marrow won't be available until late tomorrow or even early next week.
We're all tired now, and will put a bit better post up later or tomorrow.
Scott & Sunny
Thursday, April 16, 2009
Mid-day update
We know a number of you are wondering what is happening today. Scott got very good counts back with no unclassifieds. Most things in a good range.
His very last syringe of methotrexate just finished. He is hep-blocked and waiting to wander over to the day hospital for his spinal tap and bone marrow aspiration.
So far, so good.
His very last syringe of methotrexate just finished. He is hep-blocked and waiting to wander over to the day hospital for his spinal tap and bone marrow aspiration.
So far, so good.
Wednesday, April 15, 2009
Well tomorrow is the big day and darn its scary. We're all swinging between great excitement and extreme worry so its kinda weird in the Walker/Paterson household right now. Whilst one of us might be all wooohooo-ie and giving it big grins another is quiet, moody and in deep contemplation.
We have to be at the hospital early tomorrow morning. First Scott will have his port accessed and have blood tests run. Hopefully there will be no dodgy cells and all counts will be good. If his anc is over 750 Scott will receive his last dose of chemotherapy (IV methotrexate). Should his hemoglobin or platelets be low he'll have transfusions. Then at about 11am he'll go to the 'day hospital' and have anaesthesia prior to a spinal tap and bone marrow aspiration. Once Scott wakes up he has to lie flat for about an hour to prevent what they call 'spinal headache', then we can go home.
The samples will be analysed over the coming days and checked for leukemic cells. Obviously we want these samples to be clear. We could receive preliminary results tomorrow afternoon or Friday but it will more than likely be Monday or Tuesday before we hear anything definite.
OMG Im such a blithering idiotic wreck. Make sure y'all wear your lucky knickers tomorrow, ok?
We have to be at the hospital early tomorrow morning. First Scott will have his port accessed and have blood tests run. Hopefully there will be no dodgy cells and all counts will be good. If his anc is over 750 Scott will receive his last dose of chemotherapy (IV methotrexate). Should his hemoglobin or platelets be low he'll have transfusions. Then at about 11am he'll go to the 'day hospital' and have anaesthesia prior to a spinal tap and bone marrow aspiration. Once Scott wakes up he has to lie flat for about an hour to prevent what they call 'spinal headache', then we can go home.
The samples will be analysed over the coming days and checked for leukemic cells. Obviously we want these samples to be clear. We could receive preliminary results tomorrow afternoon or Friday but it will more than likely be Monday or Tuesday before we hear anything definite.
OMG Im such a blithering idiotic wreck. Make sure y'all wear your lucky knickers tomorrow, ok?
Thursday, April 9, 2009
I cant believe this shit. Scott has one more week of treatment left and instead of great excitement we are yet again faced with the dreaded "unclassifieds". His bloodwork today was okay apart from '*UNCLASSIFIEDS - 3*' in big ugly letters. I know I should calm down and take comfort in the rest of the blood report looking pretty typical, but I cant. I know I may be repeating myself but unclassified cells seen within the peripheral bloodwork of a leukemia patient could indicate cancer cells circulating in the bloodstream. On the other hand, they could also be damaged and unrecognisable cells produced by an over-stressed bone marrow.
Scott has had unclassifieds before but never two weeks running.
After clinic I went to Walmart to stock up prior to the Easter gluttony rush and had a full-on panic attack. I felt like such a spaz but since Walmart is full of weirdos I probably blended in quite well. Goodness knows how I am going to get through the next 7 days. And in case I sound like a whining, whinging idiot, pease understand this is not about me, its about Scott. I cant put him through anymore of this hell. Next weeks bone marrow and spinal will tell us what is going on, remission or relapse. It will be the best news I have ever recieved or the worst. I. AM. SCARED.
Scott has had unclassifieds before but never two weeks running.
After clinic I went to Walmart to stock up prior to the Easter gluttony rush and had a full-on panic attack. I felt like such a spaz but since Walmart is full of weirdos I probably blended in quite well. Goodness knows how I am going to get through the next 7 days. And in case I sound like a whining, whinging idiot, pease understand this is not about me, its about Scott. I cant put him through anymore of this hell. Next weeks bone marrow and spinal will tell us what is going on, remission or relapse. It will be the best news I have ever recieved or the worst. I. AM. SCARED.
Tuesday, April 7, 2009
Today Scott took steroid pill number 1800. His last one!!!! I tried to capture the moment on camera but he growled at me so you’ll just have to take my word for it.
Scott is of course excited and relieved that this is all coming to an end but since we’re slap-bang in the midst of hell week (vincristine) and he is in constant pain, the end still seems far off. He is also worried sick that maybe this isn’t the end after all. We have seen too many children relapse or face life-threatening side effects and this is definitely something that has been on his mind lately.
I can’t lie and promise that everything is gonna be just fine. I have told Scott the facts and figures re t-cell ALL relapse so he knows that the odds of being cured are in his favor. He knows he was a “rapid early responder” and reached remission quickly and that his prednisone response was also good. He understands the difference between t and early pre-t and how he is more than likely t-cell. All positive things.
As sad as this sounds I think he is scared to give up his chemotherapy and the security it gives him. He’ll be fine though, just needs some time, a new skateboard (he was skateboarding hours before diagnosis and hasnt done it since - doctors orders!) and a long, hot, fun-filled summer.
Anyhow, as miserable as Scott is right now, today is still a happy day. And to celebrate, I give you happy things, Morton Harket :) ….
Scott is of course excited and relieved that this is all coming to an end but since we’re slap-bang in the midst of hell week (vincristine) and he is in constant pain, the end still seems far off. He is also worried sick that maybe this isn’t the end after all. We have seen too many children relapse or face life-threatening side effects and this is definitely something that has been on his mind lately.
I can’t lie and promise that everything is gonna be just fine. I have told Scott the facts and figures re t-cell ALL relapse so he knows that the odds of being cured are in his favor. He knows he was a “rapid early responder” and reached remission quickly and that his prednisone response was also good. He understands the difference between t and early pre-t and how he is more than likely t-cell. All positive things.
As sad as this sounds I think he is scared to give up his chemotherapy and the security it gives him. He’ll be fine though, just needs some time, a new skateboard (he was skateboarding hours before diagnosis and hasnt done it since - doctors orders!) and a long, hot, fun-filled summer.
Anyhow, as miserable as Scott is right now, today is still a happy day. And to celebrate, I give you happy things, Morton Harket :) ….
and 'cake or death?' ...
Thursday, April 2, 2009
Curiouser and curioser …
Well, Scott did get his chemo today, hopefully his very last dose of the lovely vincristine. He also had 80% methotrexate (reduced due to having low counts these last two weeks) and has started back on the prednisone and 6mp.
His anc had limped up high enough to start back on chemo yet it still wasn’t great. His hemoglobin, platelets and white count also rose significantly and the monocytes are still hovering quite high. His eosophils and basophils (‘allergy’ cells) were much improved since last week so that’s good too. However (I always seem to have a however don’t I) he did have 10% bad cells – unclassifieds and abnormal lymphocytes. Needless to say this has scared the crap out of me and what should be the start of celebrating the ending of this nightmare has been somewhat dampened. I have been dreaming of these ‘end days’ for so long now, and now that they’re here the damn bone marrow fairy decides to go and screw it all up.
Dr Tebbi’s opinion was that these cells were more than likely due to his bone marrow desperately trying to recover and in the process spitting out damaged cells. Were it not for Scott having high monocytes and platelets though there would be cause for immediate concern and investigation. And yes, he’s the genius and I’m just a dropout with a few O’grades and a CSE in music, but still I will worry.
As for Scott, well he’s miserable, in pain (neuropathy) and spending much of his day on the toilet. He doesn’t even seem to care that today was his last vincristine and 14 days from now he will take his last dose of chemo. Perhaps a head shrink would say my anxiety ectoplasm has oozed into Scott and led to his mega-downer but I don’t think so. I may be a complete neurotic freak but I have also become proficient in the fine arts of faking a happy look when I see his weekly blood sheet and lying my arse off.
Well that’s it for now; I’m tired and need to go lie down with Silent Hill and some chocolate. I’ll write more again soon, maybe even shock you all and post something happy for a change!! Actually ... ps ... I do have a happy thought ... yesterday I caught a glimpse of the pre-cancer Scott!!! It was wonderful and kind of weird. He has had the classic "moon face" for over two years now and has virtually no definition left in his face as its so swollen. But because its been 4 weeks now since his last steroids his face has started to shrink, chins are receding, and low and behold, the old Scott is still under there! :) It sounds kind of silly I suppose, Scott is Scott after all, but it was mighty damn good to see him again underneath all that hugeness.
Well, Scott did get his chemo today, hopefully his very last dose of the lovely vincristine. He also had 80% methotrexate (reduced due to having low counts these last two weeks) and has started back on the prednisone and 6mp.
His anc had limped up high enough to start back on chemo yet it still wasn’t great. His hemoglobin, platelets and white count also rose significantly and the monocytes are still hovering quite high. His eosophils and basophils (‘allergy’ cells) were much improved since last week so that’s good too. However (I always seem to have a however don’t I) he did have 10% bad cells – unclassifieds and abnormal lymphocytes. Needless to say this has scared the crap out of me and what should be the start of celebrating the ending of this nightmare has been somewhat dampened. I have been dreaming of these ‘end days’ for so long now, and now that they’re here the damn bone marrow fairy decides to go and screw it all up.
Dr Tebbi’s opinion was that these cells were more than likely due to his bone marrow desperately trying to recover and in the process spitting out damaged cells. Were it not for Scott having high monocytes and platelets though there would be cause for immediate concern and investigation. And yes, he’s the genius and I’m just a dropout with a few O’grades and a CSE in music, but still I will worry.
As for Scott, well he’s miserable, in pain (neuropathy) and spending much of his day on the toilet. He doesn’t even seem to care that today was his last vincristine and 14 days from now he will take his last dose of chemo. Perhaps a head shrink would say my anxiety ectoplasm has oozed into Scott and led to his mega-downer but I don’t think so. I may be a complete neurotic freak but I have also become proficient in the fine arts of faking a happy look when I see his weekly blood sheet and lying my arse off.
Well that’s it for now; I’m tired and need to go lie down with Silent Hill and some chocolate. I’ll write more again soon, maybe even shock you all and post something happy for a change!! Actually ... ps ... I do have a happy thought ... yesterday I caught a glimpse of the pre-cancer Scott!!! It was wonderful and kind of weird. He has had the classic "moon face" for over two years now and has virtually no definition left in his face as its so swollen. But because its been 4 weeks now since his last steroids his face has started to shrink, chins are receding, and low and behold, the old Scott is still under there! :) It sounds kind of silly I suppose, Scott is Scott after all, but it was mighty damn good to see him again underneath all that hugeness.
Thursday, March 26, 2009
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!).
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 ....
Thursday, March 19, 2009
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.
Sorry for not updating more often, I guess Im just sick of this whole malarky.
Thursday, March 12, 2009
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”.
Thursday, March 5, 2009
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
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
Tuesday, March 3, 2009
".. 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: 
Poor Leigh was harrassed into singing and was incredible ...
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.
Monday, March 2, 2009
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.
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.
Thursday, February 19, 2009
Thursday came around again and Scott and I tried to hatch a plan. How does a cancer patient ‘throw a sickie’ in order to avoid a doctor visit? What astoundingly brilliant and cunning scam could we conjure that would allow us a ‘Get out of clinic visit without incurring the wrath of doctors and the social services’ card? Our combined genius came up with nothing. Nowt.
For the last 108 weeks we have spent every Thursday at the cancer clinic, mostly outpatient but sometimes stressed to high-hell for one reason or another, as inpatients. It just gets a little trying, and tiring. Every Thursday waking up with a pounding headache and a desperate need for vast amounts of Pepto-Bismol and Xanax, wondering if today will be a ‘move forward one space’ day or the day when the shit hits the fan.
Anyway, we did go to clinic of course, and we did move forward. Yay!! Scott’s counts weren’t all that great but like I said last time it seems his bone marrow is exhausted and the boost in counts following prednisone is nowhere near as dramatic as it used to be. His platelets rose and his hemoglobin fell, there were 4% immature cells but they were recognizable and not the dreaded ‘unclassifieds’. So he received his 101st dose of methotrexate and we were on our way.
Whilst I was there I mentioned the pain issues – well I didn’t just mention, I said I would consent to no more chemotherapy unless pain control was addressed – and was thrilled to get approval for Demerol. Every cycle the pain has increased and it’s got to the point now where Scott cannot be expected to simply ‘suck it up’. The doctors really don’t want to over-medicate the children and are very cautious in giving out strong opiates and the like, but Tylenol w/codeine simply isn’t cutting it anymore. I think with him only having 2 more doses of vincristine left it was felt that something with a bit more clout would be okay for the last few weeks. I was so excited. Finally, and at long last, Scott wouldn’t have to endure such terrible pain (and with it, high blood pressure) and could sail through his last couple of months stoned and happy. So, we get our stash of Demerol and Scott is given permission by the doctor to use it to get through the last of this cycles pain. Cool. Well it would have been if the damn stuff worked!! So much for our little Walgreens pot of 10 magic beans!! Why oh why oh bloody why doesn’t any of the really good stuff work for Scott??? Neurontin and Paxil didnt help. Dapsone nearly killed him, Reglan turned him into a pysho-monster and Compazine was just plain heartbreakingly horrific. Even the PS3 no longer holds the same mind (and pain) numbing attraction! Oh well, as long as the chemo works. That’s the main thing.
For the last 108 weeks we have spent every Thursday at the cancer clinic, mostly outpatient but sometimes stressed to high-hell for one reason or another, as inpatients. It just gets a little trying, and tiring. Every Thursday waking up with a pounding headache and a desperate need for vast amounts of Pepto-Bismol and Xanax, wondering if today will be a ‘move forward one space’ day or the day when the shit hits the fan.
Anyway, we did go to clinic of course, and we did move forward. Yay!! Scott’s counts weren’t all that great but like I said last time it seems his bone marrow is exhausted and the boost in counts following prednisone is nowhere near as dramatic as it used to be. His platelets rose and his hemoglobin fell, there were 4% immature cells but they were recognizable and not the dreaded ‘unclassifieds’. So he received his 101st dose of methotrexate and we were on our way.
Whilst I was there I mentioned the pain issues – well I didn’t just mention, I said I would consent to no more chemotherapy unless pain control was addressed – and was thrilled to get approval for Demerol. Every cycle the pain has increased and it’s got to the point now where Scott cannot be expected to simply ‘suck it up’. The doctors really don’t want to over-medicate the children and are very cautious in giving out strong opiates and the like, but Tylenol w/codeine simply isn’t cutting it anymore. I think with him only having 2 more doses of vincristine left it was felt that something with a bit more clout would be okay for the last few weeks. I was so excited. Finally, and at long last, Scott wouldn’t have to endure such terrible pain (and with it, high blood pressure) and could sail through his last couple of months stoned and happy. So, we get our stash of Demerol and Scott is given permission by the doctor to use it to get through the last of this cycles pain. Cool. Well it would have been if the damn stuff worked!! So much for our little Walgreens pot of 10 magic beans!! Why oh why oh bloody why doesn’t any of the really good stuff work for Scott??? Neurontin and Paxil didnt help. Dapsone nearly killed him, Reglan turned him into a pysho-monster and Compazine was just plain heartbreakingly horrific. Even the PS3 no longer holds the same mind (and pain) numbing attraction! Oh well, as long as the chemo works. That’s the main thing.
Tuesday, February 17, 2009
Sometime during the night the pain in Scott’s jaw subsided and David awoke at 5.30am to find him sitting in the kitchen binging on Prawn Cocktail Tayto’s. He continued feasting on salt laden foods all morning, devoured an entire pizza for lunch and still wasn’t satisfied. He ate pistachio nuts, garlic bread and apples all afternoon and evening and has now collapsed in my bed, too swollen to move. 165mg of prednisone a day will do that to you. I think we wrote once before how the kidney specialist was shocked at how much prednisone his protocol called for and told us this was twice the amount an adult transplant patient receives. Scott looks dreadful; he’s like a huge red butterball. He still has the pain but it has moved into his back now, tomorrow it will be all over his body and hopefully by Thursday he’ll be on the mend. Until next time at least.
Today I did something which scares the bejeesus out of me. I made an appointment to see the doctor for my Well Woman!!!! I have only been to the doctor once since Scott was diagnosed with leukemia. It was a very quick visit, a simple request for something awesome to dull the emotional pain and panic attacks and I was gone, vowing never again to see a doctor. Maybe its normal for parents of children suddenly diagnosed with a life-threatening disease to develop a phobia for all things medical, I don’t know, all I know is that I am horrified at the thought. (The only reason I made the appointment is because of the terrifying case of a very young woman in the UK who now has only weeks to live because of cervical cancer). I also believed that if I had my check up before I was 40 I could avoid a mammogram. So, I called, made my appointment for next week, confirmed that I could get a xanax refill during the Well Woman, clearly stated that I was still under 40 and didn’t need a mammogram only to be told that Health Insurers now cover 1 scan between the ages of 35-39 and that I would be getting one. Shit! Bad, bad news.
David has also been hassling me (and I know he means well) to have an annual check-up. LOL. I don’t think so. I know my blood pressure is beautiful (95 over 56 this morning) and so is my cholesterol. I don’t want anyone listening to my lungs and I certainly don’t want anyone looking at my blood.
But whilst this experience with pediatric leukemia and all the horrors it entails may have left me cold at the very idea of any medical evaluation, it has certainly opened my eyes on disease prevention and food. Look at what I had for my tea (dinner) ….
Today I did something which scares the bejeesus out of me. I made an appointment to see the doctor for my Well Woman!!!! I have only been to the doctor once since Scott was diagnosed with leukemia. It was a very quick visit, a simple request for something awesome to dull the emotional pain and panic attacks and I was gone, vowing never again to see a doctor. Maybe its normal for parents of children suddenly diagnosed with a life-threatening disease to develop a phobia for all things medical, I don’t know, all I know is that I am horrified at the thought. (The only reason I made the appointment is because of the terrifying case of a very young woman in the UK who now has only weeks to live because of cervical cancer). I also believed that if I had my check up before I was 40 I could avoid a mammogram. So, I called, made my appointment for next week, confirmed that I could get a xanax refill during the Well Woman, clearly stated that I was still under 40 and didn’t need a mammogram only to be told that Health Insurers now cover 1 scan between the ages of 35-39 and that I would be getting one. Shit! Bad, bad news.
David has also been hassling me (and I know he means well) to have an annual check-up. LOL. I don’t think so. I know my blood pressure is beautiful (95 over 56 this morning) and so is my cholesterol. I don’t want anyone listening to my lungs and I certainly don’t want anyone looking at my blood.
But whilst this experience with pediatric leukemia and all the horrors it entails may have left me cold at the very idea of any medical evaluation, it has certainly opened my eyes on disease prevention and food. Look at what I had for my tea (dinner) ….
It is juiced broccoli, carrots, apples, lime, lemon, a big hunk of ginger and an orange! Yes I drank it and yes it was foul. This has been my diet lately along with muesli, nuts, soy milk, berries and smoothies (and chocolate, icecream and cake) and this is what Scott has to look forward to in 8 weeks. It’s got to be better than chemo, surely? Speaking of which, time to wake Scott up for his 6mp.
Monday, February 16, 2009
Darling fascist bully-boy ....
We are in the midst of the vincristine squall and it sure isn’t pretty. Vincristine is one mean bitch yet she does a great job in kicking the crap out of the bone marrow, and hopefully destroying every last cancer cell. Every cycle seems to be harder than the last and Scott is thoroughly miserable. He told me earlier that it’s a good job we don’t keep a gun in the house as he would have happily taken it and blown his brains out. I think he was being overly theatrical although Im not sure. His blood pressure has been very high from the pain but Labetolol brings it down again pretty quick, we just have to keep a close eye on it. A repeat of last year’s fiasco would not be good. He has also just finished day 4 of the 5 days pulse of prednisone and the cravings and munchies are now in full swing. As you know, the vincristine causes massive jaw pain, so to have a child with such insatiable hunger and a more-or-less paralyzed mouth is like a cruel damn joke.
So it’s been a very quiet weekend, just hanging out here trying to keep Scott (from shooting himself) amused and comfortable. David and I made a pact not to mention or celebrate Valentines Day and it was wonderful. We scowled and bitched at each other just like normal. Ha ha, screw you Hallmark. No hockey for Derry this weekend and no more for a while I guess. I’m not sure when the new season starts, not for a while I hope. Apart from hockey being so ridiculously expensive it is also a ridiculously early morning sport AND it causes to too many bruises.
Re the Paypal Link. As David said in his post we have been overwhelmed with support and are incredibly grateful and relieved. Leukemia is scary, ugly and also, very expensive and we, like the majority of you, simply don’t have spare money, let alone thousands and thousands of dollars of spare money. Thank you to Nana, Grandmomma and Papa, Nina, Shel, Kristy, the Krug family and again to PZ and Pharyngula. Your kind donations will get rid of a big chunk of our medical debt and have done much to bring our stress levels down. We also want to thank everyone for the heartwarming messages we received. They have all been saved for Scott to look back on when he is a little older. I really hated having to put up that begging button and still feel dreadful about it but you guys didn’t give us the cold shoulder, as I was expecting, instead it brought out the very best in human nature and empathy. Of course, we could have tried this ...
So it’s been a very quiet weekend, just hanging out here trying to keep Scott (from shooting himself) amused and comfortable. David and I made a pact not to mention or celebrate Valentines Day and it was wonderful. We scowled and bitched at each other just like normal. Ha ha, screw you Hallmark. No hockey for Derry this weekend and no more for a while I guess. I’m not sure when the new season starts, not for a while I hope. Apart from hockey being so ridiculously expensive it is also a ridiculously early morning sport AND it causes to too many bruises.
Re the Paypal Link. As David said in his post we have been overwhelmed with support and are incredibly grateful and relieved. Leukemia is scary, ugly and also, very expensive and we, like the majority of you, simply don’t have spare money, let alone thousands and thousands of dollars of spare money. Thank you to Nana, Grandmomma and Papa, Nina, Shel, Kristy, the Krug family and again to PZ and Pharyngula. Your kind donations will get rid of a big chunk of our medical debt and have done much to bring our stress levels down. We also want to thank everyone for the heartwarming messages we received. They have all been saved for Scott to look back on when he is a little older. I really hated having to put up that begging button and still feel dreadful about it but you guys didn’t give us the cold shoulder, as I was expecting, instead it brought out the very best in human nature and empathy. Of course, we could have tried this ...
Saturday, February 14, 2009
Friday, February 13, 2009
Sorry for no update yesterday on clinic day. We've been quite busy and Scott and Stephanie both have just felt completely horrid. Scott posted an ANC of around 2500, so the full monty of vincristine was given. Steroids started up and joint pain is ramping up tonight. That's "normal" for the first week of his 21-day cycle.
However Scott is extremely emotional right now, and only has restless sleep in spurts. He's got a high level of anxiety about treatment ending. I'm not sure if any of us know what to expect, but it is really doing on a number on him mentally. He also demanded Stephanie buzz his hair down today. He was complaining about it making him too hot and sweaty. Emotions just run all over for the poor kid right now. I can't imagine all of the things going through his head.
So Week 100 officially got a check mark put next to it on his road map of treatment. 8 more official weeks on the protocol and then......well......"follow ups". A BMA at the end. A couple of spinals at 3 and 6 months post-treatment. But no more chemo.
I want to second Stephanie's appreciation towards all the wonderful folks who have come over from PZ's website and donated to help us. She's much better at writing than I (she says I write like a robot, and most folks probably doze off before getting to the end of my ramblings), but please know the funds you wonderful folks donated ARE an incredible, unexpected help. I am humbled by your generosity towards us.
Off to see if any of us (outside of Derry, who goes to sleep in about 3.2 seconds, and sleeps like a hunk of granite) can manage some rest tonight.
However Scott is extremely emotional right now, and only has restless sleep in spurts. He's got a high level of anxiety about treatment ending. I'm not sure if any of us know what to expect, but it is really doing on a number on him mentally. He also demanded Stephanie buzz his hair down today. He was complaining about it making him too hot and sweaty. Emotions just run all over for the poor kid right now. I can't imagine all of the things going through his head.
So Week 100 officially got a check mark put next to it on his road map of treatment. 8 more official weeks on the protocol and then......well......"follow ups". A BMA at the end. A couple of spinals at 3 and 6 months post-treatment. But no more chemo.
I want to second Stephanie's appreciation towards all the wonderful folks who have come over from PZ's website and donated to help us. She's much better at writing than I (she says I write like a robot, and most folks probably doze off before getting to the end of my ramblings), but please know the funds you wonderful folks donated ARE an incredible, unexpected help. I am humbled by your generosity towards us.
Off to see if any of us (outside of Derry, who goes to sleep in about 3.2 seconds, and sleeps like a hunk of granite) can manage some rest tonight.
Thursday, February 12, 2009
Wednesday, February 11, 2009
Darwin Day, 12 February
Whilst many familes may hand down through the generations a family bible, we dont. Instead Derry and Scott will inherit the family "bloody nora child, take your grubby little fingers off that book" Darwin collection. One of them will have to be chopped in half obviously, but och well.
Subscribe to:
Posts (Atom)
