January: No Pictures Just Words

So my last posts have been great, they have made me feel great. Focusing on the good has lifted my spirits and starting to write and be creative again has been a good therapy. But everyday my anxiety grows, so much that I am unable to sleep, the knot in my stomach pulling tighter and tighter. Some of you may know our plans for stem cell transplant at Sick Kids, some of you probably think we are there right now because that has been the plan this whole time. What many of do not know is that we are still waiting.

We were to go down to Sick Kids on Sunday, January 22nd to have Aiden’s Stem Cells harvested. We had a teleconference with Sick Kids January 10th and they went over the whole procedure.  They would put a line into his groin on the Monday and the following day he would be hooked up to a dialysis type machine and lay still while they ran his blood through it for a couple hours and collected the stem cells. The goal is to get 5 bags. If they can not get enough the first day they would do again the following and so on. We would start Chemo Feb 4th and go through 4 cycles (4 months). They told us  what drugs would be administered, all the side effects. They prepared us for the best and the worst.  They told us 95% of children handle the stem cell transplant and 3-5% do not. We needed to prepare ourselves.

I wish I could say this next part was un-true and I feel like it is because I can not believe there is more… Because of the severity of the radiation burns, MGH suggested we have genetic testing done on our return to Canada. There was a possibility that Aiden had a genetic disorder that caused the sensitivity and could also change the course of Chemo to be administered. So back at CHEO on December 21st Aiden’s blood was drawn, we  were asked a million questions about our family history, we signed the paperwork. I even signed Aiden up for a study that could help kids in the future as they ran tests on HIS tumour. I was told there was a potential of 5 things it could be (or nothing). I said I did not want to know until they knew if it was something.

So, during our teleconference they asked if we could come down a week earlier to harvest the stem cells. I asked if they had the genetic testing back as I was told this could change the Chemo administered. They seemed confused. “Ok yes we will need to look into that, stand by.” So waiting, bags packed, waiting. Friday rolled around and I received one call saying the tests were inconclusive, they were sent out again, we would not be going down the 16th. (I also received a call from the genetic team saying everything looked good but thats a whole rant I don’t need to get into right now). Ok, back to original plan to go for Harvest 22-24th. Bags still packed, waiting. We met with Dr J, our oncologist, on Friday the 20th. There was a possibility that Aiden had something called Falconi but the test results were still inconclusive. If he did have this then a new plan would need to be developed. Quite honest a lot of the conversation I did not understand, I still do not. I did not ask questions, I did not want to know, I did not want to hear what this could mean. The other night was the first night I googled Fanconi, I regretted it instantly:

Fanconi anaemia (FA) is a rare genetic disease. Among those affected the majority develop cancer, most often acute myelogenous leukemia, and 90% develop bone marrow failure (the inability to produce blood cells) by age 40. FA occurs in about 1 per 130,000 births

So, we did not go for Stem Cell Harvest on the 22nd. I really do not know what the plan is now. We were suppose to start Chemo Feb 4th and all I can think is that I don’t want the Cancer to grow back. We waited extra days for Boston and the Cancer grew, whether is was the extra days or not I know I will always concider it, god forbid.

Email From Today:
From: Stephanie
To: Caseworker
“Sorry I am sick to my stomach can you just clarify did the genetic test come back and he does have falconi?”

Reply from Caseworker:

“Hi Stephanie,
That is still the debate. His genetic markers don’t show typical fanconi, but he does have other similar markers which is what they are trying to differentiate and determine how to best treat knowing these are markers. This is why so many teams are involved to make the best decision. Emails are flying.”

I hope writing this, and setting this information free relieves some of the anxiety I have been feeling. Every night for the past month I have had a date in my head, I have tried to mentally prepare for the next 4 months. Every night I have gone to bed at 8pm with Declan wrapped tight in my arms thinking of the months to come. The was no arguments for him to sleep in his own bed. He is so happy snuggled in my arms, reading extra stories, unaware that I will be leaving again.  We have not told our kids anything about the next step. Aiden knows we need to go to Toronto for tests to see if bad guy is gone and that is it. I have sat here for a month watching Lynkon, not a baby anymore but so full of character. I think about the toddler he will be when I get back from the 4 months. I ache already as he reaches for others, not me, what will 4 month do. I think about all we have lost already. I have tried to barter with God that if I need to give up somethings to have all 3 of my boys in the end then it is worth it, to give it to me instead. I have wondered if that is the lesson I am suppose to learn, that you can not have it all.  But now this is thrown at us and I am clueless, and helpless and in disbelief.

If this was a movie I would not watch it because it would be to awful. Aiden, a 7 year old boy running around months before, surgery, losses all abilities but he fights EVERYDAY. Posteria Fossa affects less then 20%  of children who have gone through same surgery and most recover on average in a month. He is put on Zyprexa, an anti psychotic medication, and Ridlin and other medications to ease him through this but we lose even more of him. I see the look in his eyes as he watches his brother jump from couch to couch with such freedom. I see the frustration as he tries to do something, such as swallowing, that use to be so easy.  Appointment after appointment. Bandages ripped from his skin weekly only to be replaced. All the pain he has had to endure. Flying to another country for a better treatment. 4 teeth extracted, gull bladder removed, kidney stones, hooked up to a feeding pump 18 hours a day, a cord dangling from his stomach. Waking up vomiting 5 weeks after radiation has stopped. I see his face as he looks at the school when we pick up his brother. I know he thinks about the friends he no longer see’s and what he is missing. Everyday he works so hard to get it all back. But now, the potential for a rare disease that affect only 1 in 130,000! They say God only gives you as much as you can handle and until writing this, right now, I have thought about myself but this is not me! This is a 7 year old who is actually going through this, having this done to him! How can this be! God, Zeus, whoever, if you are on vacation and Hades is up there running shit please come back, PLEASE…..

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