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Update


11-17-06

I'm sorry if many of you have been checking back here for updates and are wondering what's been going on in Jaymun's life. If you recall, my very first entry stated that sometimes I would need to process some emotions first before I'd lay them out there for the general public to read. That's been the case for me the past few days.

Jaymun turned four months old on Sunday. All of his month "birthdays" have been in the hospital. This is a heavy, heavy reality for me to absorb at times. No parent should ever have to go through the things we've experienced in the past four months. Our world has been turned upside down and shaken through and through with Jaymun's birth. We're getting ready to go through Jaymun's toughest part yet, the bone marrow transplant.

Many people think a transplant is a quick fix to solve a terrible problem. And we're praying hard that the "fix" does indeed happen for Jaymun. But there is nothing "quick" about a transplant! Just the workup alone for the transplant takes weeks and weeks. He has had to go through tons of exams and CT scans and chest X-rays and lab procedures and MRI tests, etc. We have meetings with specialists and doctors and oncologists and everyone under the sun to prepare for this transplant. Devon has to go through his own series of exams and meetings as well.  We got a preliminary copy of Jaymun's consent form a couple of days ago. I haven't been able to think about much else than the frightening words that just leap off the page at me. There, in black and white, is a sentence that stands out above all others:

"It must be remembered that this treatment for your underlying disease may result in your death."


We have to give our permission to proceed with this treatment and sign what may very well be our son's death warrant. We, the two people who love this child more than anyone else in this entire world, have to put our signatures to a document that shows we have approved a procedure that may kill him. It rips my heart out to have to put a pen to paper and sign on that line. But I will. I will because the alternative is unbearable as well. This transplant is our only hope to give him a new start.

I'm terrified to lose him. The thought haunts me morning and night that there could be a world someday without our Jaymun in it. We've known since day one that the odds are against him surviving. The statistics aren't great for infants with AML. I've never actually shared the actual "numbers" for Jaymun's diagnosis because it scares me to even say them out loud. Our consent form is a general one for all bone marrow transplants. There's a statement that reads, "Published data suggests that there is about a 70% probability of survival using this treatment method."  I know that many of you read this and think, "Well, 70% is a pretty good shot at coming through okay. Those odds aren't too bad."

Until I tell you that they changed the number 7 to a 3 on our copy.

 

30% isn't a great reassurance in my book. And yes, these are all just numbers. They don't actually count unless they apply to us personally. But tell me that any one of you wouldn't be scared stiff to be in our shoes right now. I can't think of a worse place to be as a parent at this very moment. I always had two fears that I thought I could never live through if they actually happened. One was that someone would hurt or kidnap one of my children. And the other was if one of my children got cancer or some other terminal illness.

I'm actually living out my own worst nightmare. And the world hasn't stopped. I thought it would for some reason. I honestly thought it would devastate me to the point where I couldn't function. I wondered how in the world I would cope. I thought the terror of such a thing happening to a child of mine would paralyze me, literally. It hasn't. I'm crushed and I'm devastated that Jaymun has to go through this, but I haven't given up hope that maybe he'll still get a miracle.

I understand now that it's going to have to come in the form of a transplant. I'm bracing myself for watching his poor little body be stripped down to the most basic form of survival when that conditioning chemo wipes out his entire immune system. We've been warned that things could get pretty ugly for awhile. As bad as the past four months have been to stand by and feel utterly helpless through all of his treatments, the worst is still ahead of us. And that ball of fear is just sitting in my stomach, gnawing at me.

I've said it before, but it bears repeating. Jaymun's life is not in our hands. It never was. He's either going to recover here on earth or he will join the other children with cancer who didn't make it in heaven. It's an agonizing realization that we may very well join the countless other famlilies who had to watch their children suffer over a period of months and months and then die.

We were supposed to be able to come home for Thanksgiving. That plan has now changed, as most plans do around here. The doctors feel that it's best to keep moving aggressively while Jaymun is still strong and not wait for the cancer cells to multiply. That's how fast this cancer spreads--we can't even wait a week to enjoy a holiday with our family together. Devon has to come in earlier than anticipated for his bloodwork and final exams. Jaymun will be starting the conditioning chemo either next Tuesday or Wednesday and now the transplant date is scheduled to take place November 30th or December 1st.

I feel raw right now. I guess I was really looking forward to enjoying a holiday spent with our family at home. I had sort of resigned myself to spending Christmas in the hospital, but now I have to readjust my thinking to include Thanksgiving as well.

Please check back soon. I need to put some information on the website for those that are interested in mailing Devon cards or packages. Things are moving along a bit faster than I had anticipated, so I'll try to work on a new entry either tonight or tomorrow.

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