Thursday rolled around once more and off to clinic we went. Counts came back at 1990; platelets 248 and biliruben was at 1.4 so that meant onwards with the full dose of poison and another week of loveliness. Scott had a feel up – I mean physical – from Dr Tebbi and apart from being told he was getting a “little chubby” all looked good. Scott handled being told he was a fat kid pretty well considering it is a pretty touchy subject. I on the other hand, didn’t need to hear it. Anyway, the least said about how I feel on this the better. Let’s move on….
Chemo was again ‘upped’ but only slightly. Like I have said before it will keep on increasing until the anc stays at a reasonably low (just above neutropenic) level. There is no point in giving chemo to a leukemia patient if the blood is allowed to flourish! Steroids start again today, 135mg prednisone daily for 5 days, which is a massive amount but also aids in fighting the cancer. The wonderful side effect of this is hunger, big hunger, which brings us all back in a nice circle to chubby little Scott and to how pissed off I am.
We discussed his depression and I agreed to carry on with the Paxil even though it doesn’t appear to be helping. But I’ll hang with it a little longer. I also asked to see if there was anything else we could try to help Scott with his pain, depression, anxiety and insomnia but Dr Tebbi wasn’t keen on putting him on any extra medication and to be quite honest I fully agree. As horrible as all this is I would rather avoid any more medication unless things reach boiling point. I guess I was just hoping for a magic pill to take all this away, just one little non-addictive, safe and organic, magic little pain relieving, sleep inducing, slimming, happy pill. But there isn’t one. Well nothing that’s legal anyway.
Dr Tebbi also diagnosed him with ‘foot drop’. I’m not exactly sure what this is and I will do my best not to research it online as I know whatever I read will send me into a frenzy, but as I understand it, it is caused by the vincristine and should go away once he is off treatment. I hadn’t noticed it before but Dr Tebbi had me lay my leg down next to Scott’s and you could see a very noticeable difference in the way we held our feet and ankles.
Anyway, apart from having cancer, being depressed, a little psychotic, oh and now anxious about the Mayan (12/21/12) prophecies (we watched that ridiculous documentary on the crystal skulls, biggest load of crypto anthropological/archaeological/mythological/New Age dross I have seen in a long time), Scott is very doing well.
He has spent a great deal of time lately in the pool and even Derry braved the icy water last night. I appealed to his vanity by telling him that the chlorine would dry up his zits and the sun would highlight his hair beautifully and before you could say ‘Ayai Napa’ he was out there soaking up the sun, laughing and playing with his brother. For a little while he even forgot about his alternate world, the World of Warcraft.
I think that with Scott being so sick for such a long time a gulf had developed between them. Derry retreated away from all that was bad in Scott’s world, I know he was and is deeply hurt by all that his brother is going through but finds it hard to deal with it. Scott backed away from Derry because he was angry, “why me, why not Derry, why is it always me that gets the shitty end of the stick?” Scott was the one with bad eyesight, Scott was the one who was attacked by the dog and of course poor old Scott then got cancer and had a stroke. I guess it’s perfectly understandable that he feels just a wee bit peeved.
Again this evening they played together in the pool, just like the good old days when they were best mates, mortal enemies and blood brothers, without a care in the world.
Later it all went pear shaped. Scott went downhill quickly, the pains have started and he is terribly, terribly upset. I ended up giving him Ativan but it didn’t even take the edge off. I lay with him a while and we talked about everything under the sun. I promised him a day in bed tomorrow, a day of movies and Yorkshire puddings and Angel Delight. All the while he just cried. I would too. Leukemia stinks.
Well David has just knocked back some sleeping pills and headed off to bed… to Scott’s bed … Scott is in our bed. I think this is kind of normal when a child has cancer, lots of bed hopping and pills. My goodness, you should see our kitchen lately, bottles of medicines, pills, chemo, alternative potions, amino acids, and eyes of newts and toes of frogs. And today my new wonder drug arrived – Spirulina – also known as pond scum. I have been trying so hard lately to eat well (hoping against hope my healthy new living will cancel out my little vice/s); I now live on flax cereal, soy protein, walnuts, almonds, oodles of fruit, yoghurt, milk and now my lovely tub of dried algae. I don’t know if any of you have tried this stuff before but it is gross. I made a smoothie of apples, kiwi, spinach, raspberries, blueberries and a scoop of spirulina. It looked like sewer run-off. Absolutely disgusting. However I did manage to drink it (with a straw, it helps bypass the taste buds) then had a Dove bar to take the taste away. I feel so pleased with myself. Then, after Scott calmed down, I went for a walk. It’s the only way I can breathe right. When you have a sick child it’s almost impossible to breathe, well for me anyway. So I had a little walk and I saw a bobcat!!!!! It was just sitting in the middle of the path and scared the living daylights out of me. It was awesome.
Before I go I would like to say thank you to Grandmomma and Papa for thinking of me and for their kindness on Mothers Day. Also thanks to Carolyn for the beautiful book and CD. To Laura and David, Scott’s chemo angels, a HUGE thank you for being such remarkable people and for helping Scott though his treatment. Your commitment, love and generosity is very much appreciated. Thank you.
Well that’s it, I’m off to bed. Thanks for checking in. Nanight!