Dear Friends,
I could see my breath as I walked back to the Ronald McDonald house from the hospital this evening. It’s bloody chilly here already in Calgary. FH’s sister Bettyanne will stay with Nicholas tonight while I get to do the laundry and then sleep on a bed instead of a hospital cot.
FH and Frankie are at home in the Kootenays for a week. Frankie was born here in Alberta so he was able to get his Alberta learner driver’s license using my sister’s address. He’s 15 years old while in BC you have to be 16. “My friends are gonna think this is so cool!” He’s been driving already for a few years, since his feet could reach the pedals, along back-country roads, learning to shift and he’s quite good at it. He passed the test with flying colors. FH even let him drive part of the way home. Frankie didn’t stop grinning.
Frankie new driver 1999
Frankie, Logan Huston, and Miss Daisy dog on the farm
With some help from horse savvy friends our young colt Memphis will be readied so he’ll load into a trailer for the trip to another property. It’s time to farm out the horses before winter sets in and the roads are poor, the water freezes and hay needs to be moved. Our friends have been wonderful caring for our critters and the homestead.
I believe you heard how close we came to losing our Nicholas on Sept. 21st. His blood pressure was so low that Intensive Care was notified. Nick didn’t understand nor does he remember but he freaked out because a doctor said things he should never have said in front of a 12 year old child.
We were told Nick’s body was shutting down. I didn’t react, I think I went into shock and FH bawled like his heart had broken. We did as advised and decided not to traumatize our boy by getting ICU to do the nasties it would take to keep Nick alive if it was his time. He’s given everything he’s got. They said if his blood pressure continued to drop then we had only hours left.
By morning Nick’s blood pressure had risen. We were in his room when he opened up his eyes, smiled and then asked us, “What’s up?”
True to their word the docs went ahead with plan 2 and petitioned the National Cancer Institute (NCI) in Washington, DC. Nicholas was granted the therapy on a compassionate basis. That means if the chemo kills him it’s expected he won’t live anyway. Brutal, huh? Beginning on Frankie’s 15th birthday (Sept 23) and for the next 4 days Nicholas received the experimental Compound 506U78 chemotherapy.
Today is day 6 as the first day of chemo is day 0. This is the sixth time since diagnosis that Nick has begun rounds of chemo. Yesterday we got the word that his bone marrow is recovering and the cancer isn’t apparent. There was much dancing about Nick’s room.
This chemo hasn’t been cruel to Nick. If it worsens his condition it will be stopped. It’s actually been much kinder and he’s tolerated this chemo very well. His kidney secretions are showing the same and/or better and we believe that is partly because he’s gotten Reiki. He is sleepy and peaceful and has no pain, anxiety, nausea or diarrhea.
They might do a bone marrow biopsy on Tues., Oct. 5th. This is a clinical trial and the docs and NCI are obviously curious about how this drug is working. When the time comes to make the decision and the cancer has stayed the same or lessened there will be a round two of this drug. We pray.
I don’t know what to feel anymore. I’m even afraid to hope. I look at my skinny, battered child and just wish this was over. I’m shameful that I feel this way.
We had two cancer Moms from Vancouver come to spend three nights with us. One of them lost her 2 and a half year old son to leukemia in May. His mom says, “Follow your boy… he will show you the way.”
Her little boy fought hard for one year and many times he came close to the edge, but then he would rally and hang on. Yes, eventually he died, but it’s not over until it’s over.
I look at my Nick and he looks back at me with a steady gaze, and he will say “I’ll be O.K. Mom.” He is much braver than I am and so I’ll follow him. When he’s had enough he will let us know. Then we will just have to let him leave his wasted little body that is holding him here.
Nicholas was baptized on Sept. 23rd (Frankie’s birthday). I did that for me. Nick in his childish heart has a belief born of innocence so even though he’s ignorant of religion he submitted to my request he get baptized. My mother would have been thrilled, she believed in baptism. God can’t ignore us now. I think we need a miracle.
Much love,
Nicholas, Frankie, FH & Susan
Wednesday, September 29, 1999
OMG Susan, you’ve brought back so many memories of my almost 3-years journey with my daughter through the wilds of cancer. Strange how that doesn’t make me sad – I mean, she was alive then. It was crazy times but she was alive and we were in the trenches together. Your post had me remembering how much hope there was, and how I would turn my life upside down during those times, to keep my daughter going.
Parallel journeys Robin.
Yes, life is one breath at a time. As always, your journey touches me deeply.
Thank you Carol.