Archives for October 2014

C/o Ronald McDonald House

Calgary, Alberta

Tuesday, September 14, 1999

Dear Friend,

My sister Jenifer and her husband and their truck helped us move from the Ronald McDonald House in Vancouver to the Ronald McDonald House in Calgary. When winter sets in we’re really going to appreciate the underground parking. The House is in a commercial/residential area about a 30 minute walk from the hospital.

On the 2^nd floor, where we are, there are 12 bedrooms grouped around a sitting area with a TV and a gas fireplace. The House has three laundry areas and one is open 24 hours. I’ll be washing clothes on the nights when I can’t sleep. Frankie likes the room with the Nintendo. Nick hasn’t spent any time here to use it. Each bedroom has its own bathroom and phone for local calls.

Calgary’s House used to be an apartment complex. It’s nice, it’s clean, it’s plain and it’s not Vancouver. The stately Vancouver Ron McD House  in an upscale heritage neighborhood with beautiful 100 year old trees and homes large enough for many families is stunning. For seven months it was our home, and the people there our family.

This House is with many dark corners, the caretaker is a recluse and we’ve seen only a few people but they’ve been friendly. I think the language of sick children is universal.

I LOVE the hospital. Alberta oil companies and government have poured big bucks into the care for sick kids.

Alberta Children’s oncology clinic is massive and situated almost at the front door of the hospital. Out-patients are tended to on a first come, first serve basis. We never wait long because there are many nurses. I’ve even heard them complain when they have a slow day.

You haven’t seen Nick for a while. He’s gotten scary skinny. They talk about putting a feeding tube in through the wall of his stomach but he absolutely hates the idea and gets obstinate when it’s mentioned.

You know about the bone marrow biopsy and lumbar puncture, we’ve talked about how brutal they are, especially so for Nick now that he’s such a bony  thing. They have him lie on his side, a little stick scarecrow with his knees drawn up to his chest so his pelvis is exposed, and then they use a hand tool to drill into his hip bone.

FH goes in with him to hold Nick’s slight body on the table so the doctor doing the drilling doesn’t push the little guy off the table. In Vancouver they gave a medication they said would make the kids forget the procedure. But it doesn’t make them sleep, they’re awake and Nick says he knows what’s happening and he cries. In Vancouver they did the procedure on the ward in a little room at the end of the hall and we could hear the kids screaming in pain and terror. FH would come out with a pale face and I’d be sick for both of them and so damn grateful I didn’t have to be in there. I don’t know how the single parents without a spouse manage this hell, day after day, without a partner to spell them off and ease the burden.

So, there we are shortly after we arrived here in Alberta. FH is in Strathmore with Frankie, and Nick and I have come into Calgary from our camping for blood work, and we’re told they want to do a bone marrow biopsy. My friend, Nick is FREAKING. He’s sobbing big fat tears.

“No Mom! No! I don’t want to! Dad’s not here! Not today! You said blood work! Not THAT!”

I’m sick. My stomach is considering dumping the cereal I had for breakfast. We’re in the ROOM. The nurse and doctor seem a little perplexed with the intensity of fear; Nicholas and his mother, I can’t feel my lips, and this man walks in. He’s wearing jeans and sneakers and a fishing hat with colorful, feathered and tied fly fishing lures sticking out all over it. I’m sure he’s lost. His fishing pole is in the hallway and he’s wandered in to ask for directions to the nearest creek.

“Good morning doctor,” the nurse says and hands him a white coat.

He gives Nick and me a big goofy smile, sticks his hand out for me to shake and says he’s the anesthetist. Yes. The anesthetist. And what might an anesthetist who looks like Lt Col Blake from the TV series “Mash” being doing here?

“Well, my dears,” he says, “I’m going to put this fine young man into dream land while we do this little thing. It won’t take but a minute.”

The tears stop flowing down Nick’s cheeks. My stomach decides it will hold onto breakfast, and I wonder if I kiss this guy now or wait until after the procedure.

Later, while Nick lay drowsy and calm they wheeled his stretcher into a personal quiet room with a real door to shut and close out the noise, not just a cubicle separated by a curtain and the clatter of the clinic going on around.

The doctors and nurse seemed appropriately appalled and understanding of our terror when I told them the procedure in British Columbia is performed without anesthetic. My eyes leak often as we discover this big, beautiful and kind hospital.

We met a 14 year old girl named Katie from Edmonton who lost a knee to osteosarcoma (Natalie from Thrums). They saved her tibia and fibula, built the mechanical knee and her own skin covers it. Dr. Kiefer performed the operation, the first one of its kind in Western Canada. They’ve done two more of the same since.

Instead of running platelets through the IV pump, we’re told pumps injures the cells, they gravity fed 5 units and Nick’s counts leaped. He loved that it took only 15 minutes.

Remember back in July when I told you Dr Ukpeh the pediatrician from Trail discovered Nick’s testicle was swollen and we were told he has leukemia in it? The poor kid has received radiation to his right testicle for the first time today. And he’ll get radiation 12 more times. Does that mean he won’t have his own kids?

This hospital operates under the Pediatric Oncology Group as opposed to BC being with the Children’s Oncology Group. The two groups run their own clinical trials for cancer research.

The Pediatric Oncology Group is affiliated with St. Jude’s in Tennessee and they benefit directly from the research being done by the world’s leading pediatric cancer hospital. Our doctor, Ron Anderson, has been on the phone to Houston, Memphis, Germany and Israel as therapy is being organized for Nicholas.

They are performing Allogenic (donor) Stem Cell Transplants. Overseas, this is being called a “light transplant.” FH, me and possibly Frankie will be tested to see if we are a match. Wouldn’t that be amazing if one of us could help him? And Nicholas doesn’t need to be in a complete remission.

They say the donor stem cells seek and destroy the mutant leukemic cells.

Put me in a submarine and shrink me to go inside Nick’s body and kick leukemia butt! Think of the 1966 movie “The Fantastic Voyage.”

 

We are so hopeful!

Good luck to you. I will write again soon. Take care.

Susan