Scott & Sunny

Scott & Sunny

Monday, April 20, 2009

All Clear!
More later, Im kind of stunned, Scott has gone all emotional, the cats are freaked out (I dont think cats like exuberance and grand displays of excitement) and David thinks he's going to have a heart-attack.

Sunday, April 19, 2009

the tears of the immigrant

I know we’ll be celebrating tomorrow. I can feel it in my waters. Just can’t believe that we’ve lost so many along with way and they won’t be around to share in the joy. Callum and my dad should have stuck around. I wish I could scream and shake my finger at them. They should have been here, or at least, on the end of the phone. Damn.

Friday, April 17, 2009

I just spoke to St Joes and his spinal fluid has come back negative for leukemic cells. This is great news of course but the bone marrow is the one Im REALLY worrying about. The clinic closes in a few minutes so we wont hear anything now until Monday at the earliest.
Patience is not one of my virtues. Growl.

Thursday, April 16, 2009

Guess what? Im still a blithering wreck! LOL. However, today went well, his counts looked good, platelets and hemoglobin rose slightly, no unclassifieds or anything sinister, and his monocytes looked good. Healthy counts sure settle nervous tummies!! Here is Scott with his beautiful labs ….

Since his anc (an anc is some complicated, for me at least, mathematical equation involving his neutrophils and white count and calculates his ability to defend against infection) was well above 750 he could go ahead with his final dose of chemotherapy. This is Bob (our amazing nurse with a twisted British sense of humour) wiring him up …

His last (hopefully) infusion of methotrexate completed ….

Next we went off to the day hospital for the spinal tap and bone marrow aspiration. Scott was angry because he wasn’t hooked up to the monitor until the last minute and wanted to play ‘heart rate etch-a-sketch’ and ‘flatliners’ with it. Scott looking mad …

Finally everything got underway and David and I had to leave the room for the procedures. They don’t like parents to stay as the bma can be pretty brutal and sometimes it takes quite a lot of drilling to get the samples they need. I once walked in as they were cleaning up and it sure aint pretty! Like David said earlier Scott did wake up during the procedure and tried to pull the needle out of his back. Thankfully he doesn’t remember. Dr Tebbi took three samples of spinal fluid and two of bone marrow. I think he said one of the bone marrow samples was to be used for research but I could be wrong. My mind is still a bit fuzzy. The other samples will be tested for leukemia and so for now, we just wait.

So that was about it really. Scott woke up and cried for a while which he always does after anesthesia, he doesn’t know why, there is no reason, he just cries. Weirdo. Then he got angry at having to lay flat for an hour. Then he whined a lot. Then we left completely gobsmacked. Is that it? The end? It all feels strange.

Later we hit GameStop, Tropical Smoothie, SteaknShake and then went for ice-cream. Lots of presents were opened and lots of “wow”s were heard. Then everyone fell asleep. Except me.

Just waiting for that phone call.

Scott and his beautiful, beautiful angels. We love them all so much …

Back home

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.

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.

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?

WOW! Watch this ....

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.

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 :) ….
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.