Thursday, June 29, 2006

Self Portrait Marathon #18




On Sunday, my daughter called -- their neice had been rushed to Children's Hospital in St. Louis for tests, and was placed on the oncology floor. Monday, she had a bone marrow biopsy; this 12 year old child has Acute Lymphocytic Leukemia. She started chemo on Tuesday.

On Tuesday, my grandbaby began showing a rash. She'd had her chickenpox vaccine on Thursday; she visited her cousin on Sunday on the Oncology floor of the hospital. The rash looked like chicken pox. My daughter called the hospital to alert them to the possibility; everyone freaked out -- my daughter, alone (her husband is in St. Louis with his sister, to help out for the beginning treatments), went into a panic convincing herself that she had murdered all these cancer children. I spent hours on the phone calming her down -- she had no way of knowing that the baby would have a reaction to the shot, and that her real fear is for her neice.

Well, the baby didn't have chicken pox at all -- she had a strong allergic reaction to another medication and her rash is that. She's not contagious, she's completely uncomfortable, and she'll get over it. My daughter went into another panic, that now her baby would stop breathing from the allergy. Again, I calmed her -- the real fear is for her neice.

Somehow, these things change our perspective as to what's important. I have no idea if my son-in-law's sister has insurance to cover her daughter's treatments. I'm so worried for her inability to ask the right questions, and to be able to really make the right choices. I'm glad my son-in-law went down to be with her, to be her advocate. My daughter feels helpless, and that puts all her fears into her imagination. All I can do is be at the other end of the telephone for her.

11 comments:

robin andrea said...

Such sad news for your daughter's niece. I hope everything works out for her and the family. Navigating the medical world is really a challenge. I just googled Acute Lymphocytic Leukemia and read that there is an 80% cure rate for kids! That's great. Sending best wishes for a speedy recovery.

The Fat Lady Sings said...

Your daughter and her husband must be under incredible stress. Everything seems so much worse when you're tired or upset. And there's nothing anyone can say that will make it better. You're listening to her – offering up a shoulder to lean on. That’s probably what she needs most right now - talking relieves stress. It does for me, anyway. And like Robin Andrea says - there is an 80% cure for that disease. Your daughter’s niece has a wonderful chance of coming out of this completely healthy. I will keep her in my thoughts and prayers. And don’t forget to get some rest yourself.

DivaJood said...

Thank you for the good thoughts. It was almost funny, when my daughter called with the news, she said "If you have to get leukemia, this is the kind you want." It has more like a 90% cure rate.

My daughter participates in Team in Training, which trains people to run marathons, or do Century bicycle rides while raising money for the Leukemia & Lymphoma Society. There is a new, aggressive treatment using "smart" drugs that came as a direct result of research funded by Team in Training.

It's just always something, though, life. One has to keep a sense of humor through it all.

sumo said...

Sorry for their trials in the medical world...hope you are holding up okay. I can understand your daughter thinking the world had landed on her shoulders...poor thing.

DivaJood said...

Thanks sumo. It is what it is, and all I can do is listen. My daughter is getting a bit more balanced again, now that the doctors have calmed her down about the baby (who is, despite all her splotches and rash, her usual happy self.) I am holding up well, but could really use a vacation.

Yoga Korunta said...

Diva Jood, to the extent that I may be of service to your family, I am a registered marrow donor.

Dr. Charles said...

yikes. i wish for the best. nothing worse than children with illness, it breaks your heart.

Tina said...

My paternal grandfather had a sister die from leukemia. She was sick before they came to the US from Italy, but she passed away shortly after the family settled in Pittsburgh. B/c of that, my grandfather always gave to the St Jude Children's Hospital, and that tradition was passed on to my dad and to me. And while I am Catholic, and very fond of Jude as a Saint, I think I'd support this cause no matter what.
Instead of wedding favors, Hubby and I gave everyone a card with a packet of wildflower seeds and an attached note saying that a donation to the St Jude hospital was given in place of favors.


And BabyGirl did get a reaction to her chickenpox vaccine. She was very sick and cranky for several days with a very mild rash of chickenpox.

Hope everything works out and I'll keep both kiddos in my prayers/ well wishes.

DivaJood said...

Yoga, thanks for the offer. Don't think it's going to be necessary to do that, and their neice is just maintaining a fantastic attitude.

Dr. Charles, yikes is right!

Tina, the wildflower packets and contribution card is a great idea! My daughter had a reaction to her measles shot 30-something years ago, broke out in measles. Baby bean has an allergic reaction to some meds, not chicken pox.

karena said...

I will say a little prayer for your niece and there is a lot of advancement in childhood leukemia.

DivaJood said...

Karena, thanks. Their neice is a real brave little girl, she's been in great spirits despite feeling sick as can be from treatment, so quickly. But she's in a good hospital, with the kind of Leukemia that has the best cure rate, so there is a lot of hope.