Monday, May 18, 2009

So Far So Good

Lisa went for check up with docs today. She did great with the blood draw. They got it in one poke and collected 12 tubes (thank goodness they only need a few drops in each!). Lisa got a little anxious before they stuck the needle in, but once that part was done, she was fine. I have to admit, I got a little woozy with her on my lap and a full view of the blood coming out. They assured me I wouldn't be the first parent to pass out...geez, thanks.

Doctors are pleased with her progress. They say we are not in the clear yet...but are very impressed how much of the disease is gone given what she came in with a year ago. Most kids still have active sites even after the treatments, so at this point Lisa is ahead of the game. Yeah.

There will be monthly check ups for the next year and scans every 3 mos. She is on maintenance drugs for the next year to help rebuild her immune. She is also starting Accutane which is an acne medicine, but in now being used to help fight neuroblastoma. Studies show that Accutane encourage immature neuroblastoma cells to stop dividing or to die.

They are still hoping there is a way to get her onto an anti-body study. It is a painful procedure and requires 3-6 different weekly stays at the hospital but has shown to be helpful in fighting NB.

So, things are going well and I try to stay in the present or very near future. Looking too far forward makes me uneasy because I know what our other neuroblastoma friends have gone thru and I know that approximately 40 percent of high-risk stage 4 patients relapse, usually within the first two to three years after diagnosis. Although some of these patients can be brought back to near remission, fewer than 20 percent of these patients are expected to survive for longer than five years. Those are tough numbers to swallow. But I continue to have hope and try to stay grounded in reality....none of us really know how much time we have left, so we can't spend our time wondering "what if" we need to spend our time living life at that moment.


Anonymous said...

so glad to hear all is going so well and that she is able to enjoy her yummy ice cream.

Take care
The Kreagers

Anonymous said...

Way to go Lisa--and mom!!!

I'm glad to hear the doctor's are pleased. I admire your active action in staying in the present. You are all such good role models.

Sending you warm regards,

Diane Ebeling said...

We are so happy that Lisa is doing so well!! It is our belief that Lisa was put on this Earth to do something spectacular, therefore she is beating, and will beat this darned cancer. She is an amazing little girl, and an inspiration to many!! Keep up the good work, stay strong, stay positive.

Diane and JuliAnna

Anonymous said...

That is some very awesome news I always think of Lisa since the weather has changed that she would be able to enjoy her summer doing all the things kids enjoy doing. I pray that Lisa's progress will be a testimony to the power of prayers from all over. Every update makes my heart fill with joy for your family I would encourage you all to enjoy each day to the fullest and may each one be filled with Lisa's smiles and giggles..

Love, Kristen McIntyre