THE UPDATE WE HAVE ALL BEEN WAITING FOR!!!

First of all, let me start this post out by apologizing to you all for not updating before now. We did get news last week, but nothing firm. You see there were about 5 different tests we were waiting for results of, and of course they all don't come in at the same time. So I will just update you all on the results that we do have, we are still waiting on one.

We already gave you all the update on the MIBG scan. The MRI showed that the liver looks great, no tumors, the lymphnodes show no tumors on either side of the neck and the primary tumor shows more than the 90% shrinkage size that the doctors gave us as a marker. The primary tumor shrunk from 9cm to 1.99cm. We looked at the MRI's from Feb. and compared them to Friday's and I can't even describe the difference. This is all wonderful news and we are so very happy. The radiologist that looked at Madelyn's scans said that the "very, very faint glow" on the right side of the chest from the MIBG was not totally clear in the MRI. Apparantly, from being asleep so long before the MRI, things were more relaxed and covered that spot up. The Oncologist talked to the Radiologist extensively about the area and they came to a concensus that it was just normal tissue taking up some of the dye, not Neuroblastoma tissue. Rick and I of course would have liked to have more conclusive evidence that this IS NOT Neuroblastoma, but they could not say for 100%, but they are the experts and feel strongly that it is nothing to worry about. Madelyn's bone marrow came back negative as well. We had to wait for the results of that test, apparantly they were having a problem with the test of Madelyn's and a few others.

We are still waiting to hear back on her VMA/HVA counts. They usually take 1-2 weeks and w/Labor Day we are hoping to hear this week. They have been at normal levels for the past 5 months or so, so we are not expecting them to be elevated.

All and all we have received EXCELLENT results and are so very happy that her Cancer is gone. We are so hesitant to say gone b/c there are no guarantee's in this journey. No the tests did not show any glowing, but it doesn't get to a cellular level. We are talking this wonderful news and just going to enjoy it. That is all you can do is take everything day by day.

When we went in to have her MRI on Friday before labor day, the nurse decided to do lab work even though there weren't any orders. Surprisingly she was neutropenic, her counts were way down. So we just stayed in labor day weekend and enjoyed being together. That is always fun!!

On another happy note, Madelyn now has 2 top teeth and 2 bottom teeth. As soon as they top ones hang down enough to get a cute toothy smile picture, I will post it for you all to see. I am in amazement that she will be 1 year old in only 10 days! My God this year flew by!! Preoccupied w/things I guess. She is also on the verge of walking. She kept taking 2 or 3 steps to me this evening from the couch or her walky toys. It won't be long before I'll be chasing her around the yard!!

Please remember, September is Children's Cancer Awareness Month...pass the word!!!!!

As soon as the VMA/HVA results come back in normal levels, we will get the official NED status from the Oncologists!!! YEAH!!!! Then we will schedule Madelyn's surgery to have her port taken out, since we won't be doing anymore chemo, HIP, HIP HOORAY!!!!!!! After that the game plan is to go back once a month for urine test and lab work. As long as those continue to stay at normal levels, we will only do an MRI every 3 months, until we are clear for about 5 years, then I believe they monitor her once a year. WHAT A BIRTHDAY PRESENT FOR HER!!!

We are so grateful to you all for all the kind, encouraging words that you have sent us and all of the wonderful people who have prayed for us! We could not have made it through this long, emotional journey without you all and for that we will forever be grateful. We love you all and please continue to keep Madelyn and our family in your prayers. Let's pray that this beast, Cancer, stays away FOREVER! We will definitely keep the blog updated, because life has just begun w/Madelyn and we would love for you all to still be involved.

All our love,
Rick, Sheila and Madelyn