Saturday, May 05, 2007

+276 Lung Nodules and Red Blood Cell Destruction

WBC 7,800 - normal
Hemoglobin - 9.1 - not bad for all the blood draws
Platelets 239K
Weight 11.8 - stable

Happy National Scrapping Booking Day! I love passing the time by looking at the layouts at www.scrapbook.com. Most of the layouts are family focused and positive. They perk me up and make me laugh.

Were still here at Stanford. Been here all week. Not sure when we are going home. I'm beside myself right now. Please pray for David. His CT scan came back with three nodules on his lungs. The doctor just showed them to Michael and I. They don't know exactly what they are. The Atypical Mycobacteria that he has does target the lungs. It could be this. It could be fungal, which means a whole different set of antibiotics. They want to do a lung biopsy. The biopsy is done by inserting a tube down the throat which is better than opening him up. I'm in tears right now. I'm not sure how to handle this. What part of his body are they NOT going to touch? I'm not sure I can hold myself together tomorrow when the doctors do their rounds.

After a good cry, I'm ready to continue with the other piece of bad news. His body is in fact destroying his red blood cells, so that's why he's had anemia. Why the doctors waited so long to figure this out is beyond me. I told them months ago about another boy we know who was in the same circumstance. They kept repeating the reticulicite test and it would come back normal. Dr. Weinberg ordered another type of test and it came back positive. David is launching antibodies to destroy the red blood cells. They will put him on another medication for about 6 months to stop the anemia. Yes, it will take care of the problem, however, we will not know for sure until the next generation of cells grow, which takes another 6 months. He will be very susceptible to infection, like a wild fire in the dry woods.

Now it's all fitting together why his doctor said it would be another year before this is all over. Thankfully, David is doing very well. He does not have any symptoms. No fever, no coughing, no nothing. We can rejoice in that! It's hard to imagine so many things are going wrong week. I'm happy to report that he is active, eating, talking, silly, laughing, and so sweet. Please pray God gives us peace and gives me strength to face the doctors tomorrow without crying my eye balls out!

Thank you for reading!

3 comments:

Joanne Klein said...

Hi Aimee,
Just wanted to let you know that we are thinking of David, and hope that you start hearing good news soon. Our Baden had lung biopsies twice, once before his transplant, and once after. Both times, the biopsies were because of something in the lungs, and both times he was diagnosed with PCP. Hang in there. These are hard times, but then 'one day', things just start getting better. Every treatment is different so time will tell if it takes a year or two. I hope that David's 'one day' will be soon. Baden's 'one day' took about 3 years after his transplant, but now we are past it it was soooo worth it! These boys are so special, and this is an incredible journey. Stay positive and strong. When Baden was sick I used to say the serenity prayer.

God grant me the serenity to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

Hope this helps.

Joanne.

Anonymous said...

We are praying.

love,
The Macauleys

Anonymous said...

Dear Aimee,
I think of you often. This journey has been harder in so many ways than I could have ever imagined and yet I look at Shimmy and it seems worthwhile. We are having a hard time with neurological issues. We must try and keep strong for our strong sons who have fought so hard,
thinking of you,'
Belinda Friedman