Message to a Friend.

Today Elise goes to the Fred Hutchinson the "Hutch" to begin the evaluation for a transplant. She is the child that was diagnosed with ALL in July of this year. While she has ALL she also has a brand that is laughing at Chemo Therapy. She has skipped 2.5 years of treatment and gone straight to transplant.

Transplant world is another universe. It is full of lots and lots of tests and appointments a the Hutch. Then if all goes well and there is no evidence of cancer in her system, she does a few days of total body radiation. When every part of her bone marrow is dead she gets new batch and then waits. There are a magic 100 days.

Her mom was anxious the other day and I sent her the following e-mail. As I wrote it, I realized how hard this has been. Sometimes I look back and wonder how we made it to the end of this deep dark tunnel.

Message to Susan R.

I have been working on getting my blog in some sort of order, in notebooks and ready for a serious read through and edit. I have been re-reading the entries from two years ago and find that I did much more screaming. Pleading was my thought but just being angry at God was a part of it. I found little solace in any of the screaming but loved that God let me do it and would not think less of me. I complained a lot to Mary. I was not raised Catholic but I love that there are lots of saints that seem to have different jobs. I am sure there is an organizational chart somewhere.

This whole process is so hard on so many levels. So much pain our children have to endure. The disappointments are deep and lasting and ones we never want them to even know about. There is no way that they will not carry scars away from this process. Physical and emotional. It is just how it is and so hard to accept. Mary-Elizabeth has the kind of skin that creates big scars. She has hugh striation of her skin from the rapid weight loss and gain from the steroids. Her port scar will fade at some point but will be there all her life. She has 6 dot tattoos that will be with her. I asked about removal but they said they were a message to her future doctors and needed to stay. Future Doctors. Is that a good statement or a bad one. Do we want them to have to see doctors all their life or should there be solace that they will see them in their future.

It has taken me a long time to process all of this. All the vast changes and detours that Leukemia brings for everyone. There are no magic words, it is sort of like giving birth. A process and no way to short circuit the system, 9 months are required. The difference is that we have a much better idea about the outcome.

Our children know that we have expectations that involve them. They know that they receive lots of good cu dos for doing well in sports and school and being great people. It becomes a part of who they are and how they see themselves. The adopt our expectations and make them there own. Many of them are sort of warped in the process. I was running around making an elaborate costume for M-E when she was little. It had feathers and jewels and lace and......... (over the top). I was upset that it was not coming out right. My very wise mom asked me what I was doing and why and I told her I was being a good mom and making a special costume for Mary-Elizabeth. Mom sort of laughed and asked if I remembered her ever doing more than cutting a couple of holes in a sheets and announcing that I was a ghost. I had to laugh.

I have thought a lot about those expectations during the last couple of years. M-E played basket ball and Volley Ball she was signed up for crew. She was a leader in school projects and chosen to do lots of special things. She received straight A's. It was so so hard to have times during treatment when the days activities was a trip from the bed to the shower to the couch to the bed. I have to fight all the time to not push more. The bikes are in the garage. Greenlake can be a short walk. Movies can be rented on DVDs. Books can be listened to on tape when the brain is recovering from radiation. The affects of Vincristine wear off. The body does come back. Now no one can say how or to what extent.

Adaptable, they are adaptable. I wish I could be more so but then what I have learned is that people look at you and me and all the other mothers and are amazed at what we have done, what we have to do and how we are still able to face most days. The need to have maintain strength for our families and our children and ourselves does work. One small step at a time. One small miracle at a time. It is so hard and so discouraging.

Ms. Susan your daughter will make it through all of this. Jared will be a better person for having this experience. You and Michael will never take a moment for granted.

Well I have to go and pretend to be a lawyer. It is Friday the 13th and M-E is home. This is her most hated day. She was diagnosed 26 months ago. I can so remember being at month 2 and 3 and wondering how we were going to make it through. But we keep at it. I don't know when it will feel like we are through.

Good luck at the Hutch.