Welcome Sophia Hope Bell!!!

Welcome Sophia Hope Bell!!!
Maddy has officially become a big sister!!

Tuesday, September 4, 2007

Big Day is tomorrow

Tomorrow is a pretty big day. I (Rick) am not a "jinx" person, so I can be honest. I think tomorrow the doctors are going to tell us that Madelyn is NED (no evidence of disease). This means we'll be stopping treatment, removing her port, and scheduling regular checkups to monitor her status. If not, I don't know what they could say. The MRI showed nothing in the preliminary images. The MIBG was negative with the exception of a very very faint spot in the R chest where she never had disease before. The MRI showed nothing, but it wasn't clear due to some atelactasis (deflating of the lung) which probably would not have occurred had we done the MRI first and the bone marrow biopsy last like we have the other 3 times. This is the reason that I haven't really gotten too excited, because its no EVIDENCE of disease, not 100% without disease. With the knowledge that we are limited by the technology and testing parameters, something could be missed and stopping treatment can pose some risk. That's my worry. I said it. Now that it's out in the open, I am very hopeful that the worst, from a physical perspective as far as what Madelyn has endured, is behind us. We know we'll get uneasy every three months for scans. We worry about relapse. We are afraid to stop treatment. Will the chemo she has received predispose her to leukemia later? Again, a rant.

We await the news with guarded joy. We normally wouldn't admit this out loud but all signs point to a good outcome and I feel we should be allowed to embrace it, even if only for a moment.

As her father I feel its my #1 job to staunchly defend my daughter's right to live. I need to be strong for my wife. Early on, it was easier for me because we had such a learning curve and when she had questions, I generally had the answers. Now the situation is so nebulous that I have had to say recently that I just don't know when asked what criteria would make surgery an option, or what's the likelihood of so and so, what patients relapse the most, etc. Every day I question my ability to make these decisions and be strong for my family. Most of you who know me probably wouldn't think that about me. I am generally very clear that I think most of the time I am the smartest guy in the room. Well, that's OK when it comes to little stuff. It's OK when a mistake now and then is acceptable. Madelyn is the one who gets sedated, cut on, poked with needles, is at risk for infection, throws up at the sight of the activity center at the hospital. I hope one day she knows that I would much rather it be me than her, not just so she wouldn't hurt, but because I could handle it better than watching her endure it. It hurts more than trading places.

Mark this one down as a therapeutic entry for me. Writing here helps me deal with this and whether or not anyone reads it, it serves a purpose.

Thank you for your continued support and prayers. With all of the things Madelyn is learning, we haven't started to teach her to pray yet. I'll work on that this week.

Love
The Bell Family

5 comments:

Anonymous said...

What a great post, Rick! I will be thinking about you guys all day today & pray that everything will come back negative & Madelyn will finally be finished with all of the horrible things she's had to endure. I think one of the things that surprised me the most about becoming a parent was the way it actually physically hurts to see your child in pain. I totally agree that it would be less painful to go through sickness etc. myself than to watch my child go through it. Your family has gone through more in the last year than anyone should ever have to & I hope this is all over for you! BTW-yes, you usually do have that "I'm the smartest guy here" attitude : -)-but you know sometimes it's okay not to know everything & it doesn't make you less of a father or husband!

April Braswell

Michelle said...

Hi Bell Family,

I am praying for NED for Madelyn. You are all in our prayers. I will check for updates.

www.caringbridge.org/visit/mackenzielanae

charles-farmerfamily said...

Rick....yes people definitly read what you write. I check the site from time to time to check on my little neighbor. And I am sitting here right now with tears just streaming down my face. I am so sorry for all that ALL of you have had to go thru! I wished I were still there so that I could help. But since I am not - I will send up a big big prayer who knows maybe since Mark is up there - we could ask him to be her guardian angel!!! Please take care and let me know if I can help in any way! Love you all Tracy and Ethan

Anonymous said...

Yay Maddy!! Such a fighter, and all before her first birthday!! Just think, later in life what a force to be reckoned with she'll be! ;) Hugs and Kisses!

Courtney

Anonymous said...

RICK, HOPE ALL WORKED OUT FOR MADDIE. WITH THE FIRST BIRTHDAY, IT SURE WOULD BE WONDERFUL TO START HER 2ND YEAR ON THIS EARTH WITH NOTHING BUT FUN THINGS TO DO. I READ THE BLOG ALSO OCCASIONALLY. ALWAYS HOPING AND PRAYING THAT WHEN I OPEN UP THE PAGE THAT ITS ONLY GOOD, GREAT NEWS. ITS LIKE PEEKING DOWN THE STAIRS CHRISTMAS MORNING HOPING TO SEE SANTA. THIS IS THE BEST THERAPY FOR YOU, I AGREE. WE CAN ALL BE SOUNDING BOARDS FOR YOU. EVERYONE NEEDS ONE AT SOMETIME IN THEIR LIFE. YOU AND SHEILA ARE THE BRAVEST PEOPLE I HAVE EVER HAD THE PLEASURE OF KNOWING. I CAN'T EVEN BEGIN TO IMAGINE HOW THE BOTH OF YOU GET THROUGH THE DAY. PRAYERS FOR YOUR ENTIRE FAMILY, ALWAYS. GIVE PAT AND RON OUT BEST ALSO. LOVE THE WINTERHALTS, CHUCK AND JACKIE