July 19, 2012

What a mystery this child is! So since he was diagnosed, everyone has said he had an allergy to SSKI (iodine) drops that he receives to protect his thyroid from the injection he has to have for the MIBG scan. Well the nurse practitioner here yesterday was trying to pin point if it was that or the MIBG injection itself. There has been a lot of questions about it and they decided that he was allergic to a buffer attached to the radio isotope that makes up the MIBG injection, so we have been pre-medicating him for that.
Then this morning, before he ever had the MIBG injection, he started getting hives; so back at square one...not knowing what the culprit is...
I think I told everyone we were doing a CT today, an MIBG Friday and a bone marrow Monday?. Well we are. One because they have to do it before starting the 3f8 and also because it has been so long since he actually had cancer treatment that it is wise to see what is going on inside him. This is "scanxiety" all over again. Please pray the cancer has not come back because it can...sometimes it does.
Just last night I was reading about a little girl diagnosed in May of 2009 and she went through treatment (different than ours though) was declared NED in November 2009, relapsed in January 2010 and was plagued by such aggressive tumors that she passed away in March 2010. Not even a year after diagnosis. I think it is (sometimes) expected that we are suppose to be over the moon that he was declared NED, and we are; we just know too much to be too happy just yet. One of the biggest "tests" with neuroblastoma is if it relapses and where. Where makes a lot of difference. It will be at least two years before we can really feel at ease with things, but we will be happier with every good set of scans we get. And we will most certainly be appreciative of all of the good times.

Clayton really is magical. He is so perfect. Scoliosis, cancer, lack of a kidney, none of it can take away from how perfect he is to me. I wish other people got to see the amazing little boy that George and I know, but most don't. When he gets excited and starts waving his hands and shuffling his feet while giggling so hard that sometimes no sound comes out, there is nothing better in the world. All of the things cancer takes from you, love and appreciation are two of the things that it gives you; a whole new kind of love for your child.
In a cruel twist, it also makes it harder for those moms that lose their children. I have read so many of those stories now and I have met so many other families knowing that if statistics are right, then some of our children will not survive this. None of us know which of us it might be, we are all just trying to make it to tomorrow, praying to God it doesn't turn into one of the worst days of our lives. The stories of parents who have had to take their children home on hospice care are heartbreaking. Just this past week, I have found myself trying to hide tears in the day hospital as I read about the final days of a sweet baby boy and I have found myself crying silently in the middle of the night while George and Clayton slept as I learned about the pain a family experienced as their little girl drifted away. To those moms who have lost their children to this horrible beast, I am so so sorry for your loss. No words will ever be sufficient at expressing my sorrow for what you have had to endure. It seems torturous to discover just how deeply and unconditionally you can love your child just to have them taken from you.

The mother of the little girl I mentioned above had the story below posted on her blog. The part about patience amused me; it seemed so appropriate.

The Chosen Mothers

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit.

Did you ever wonder how mothers of children with life threatening illnesses are chosen?

Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation.

As He observes, He instructs His angels to make notes in a giant ledger.

“Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecilia. Rutledge, Carrie, twins, patron saint Gerard.”

Finally, He passes a name to an angel and says, “Give her a child with cancer.”

The angel is curious. “Why this one God? She’s so happy.”

“Exactly” smiles God, “Could I give a child with cancer a mother who does not know laughter? That would be cruel.”

“But, does she have patience?” asks the angel.

“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair.

Once the shock and resentment wears off, she will handle it.”

“I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I’m going to give her has it’s own world. She has to make it live in her world and that’s not going to be easy.”

“But, Lord, I don’t think she believes in you.” No matter, I can fix that. This one is perfect. She has just enough selfishness.”

The angel gasps -”Selfishness? is that a virtue?”

God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see…ignorance, cruelty, prejudice…and allow her to rise above them.” She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side.”

“And what about her patron Saint?” asks the angel. His pen poised in mid-air. God smiles, “A mirror will suffice.”