More Results & Schedule

Let’s get right to it. The bone marrow studies, including four aspirates and two biopsies are all NEGATIVE. Again, no evidence of disease!

DisneyWith that round of stressful testing behind the Eigners, a new plan unfolds. They will be back the University of Minnesota on April 29th for a renogram and an appointment with the Pediatric Nephrologist. They’re still trying to assess his kidney function (or damage) and determine how long he will need to continue with blood pressure medication.

During this trip they will also draw and mail a blood sample to NYC for HAMA testing. The testing will continue every four weeks until he is HAMA negative and can continue with the 3F8 antibody treatments. The next trip to NYC for testing is scheduled for July, but hopefully he’ll be out East sooner for the antibody treatment.

The picture is Peter and Kate with a beast that I can’t classify. It’s one of many photos from the wonderful trip to Disney. A complete photo album of the trip is to come.

Initial Test Results

I’m still alive, although feeling guilty about my lack of updates. I guess no news is good news until it’s time for scheduled tests. I just spoke with Erika and some results are back.

  • The MIBG shows no evidence of disease!
  • The CT scan shows no evidence of disease!
  • Peter is still HAMA positive

I can’t express how great that news is. I just know how I’d feel if I had to type out a different test result. None of us expect anything other than clear tests from here on out, yet we know that reality guarantees nothing. So celebrate every great result.

It sounds like the trip is sailing by. Peter is doing well throughout, even though he had to get poked for a temporary line that was removed today while he was sleeping during the bone marrow scope. The results of that test will be back in a week or so.

The three of them were given tickets to the Mets baseball game tonight; Peter will enjoy that.

I’ll keep the test results coming as we know them.

Camp Sunshine!

We’ve been on the go! We spent the last week at Camp Sunshine, a 6-day retreat for families of children with life-threatening illnesses (this was one of the oncology weeks). It was really refreshing and a very special week for the 5 of us. The camp is held at Yogi Bear’s Jellystone Park/Three Bears Lodge in Wisconsin. It was a busy week; full of really fun activities (“day camp”) for the kids, lots of playing in the waterpark, and some really quality discussion time for the adults. It is a camp designed as much for the parents as the kids, which makes it really unique. It ends with an unbelievable evening of all kids (cancer kids and siblings) releasing their “Wish Boats” into the lazy river in the water park. The kids make their boats during the week, and they each have a little candle that is lit while they make a wish and send the boats onto the river. We met lots of wonderful people, including 3 other NB families whom we had not met before! The camp was founded in Maine, and I believe they have camps running out there almost year-round! Thank you Donna for encouraging us to go, and a huge thank you to Mrs. Titus, Mrs. Bailey and Mrs. Johnson, Peter and Ellie’s wonderful teachers who have been more than accommodating and understanding about them missing a lot of school lately!
We went straight to Mpls on Friday so we could attend a benefit for our little friend Ella Hauschildt (caring bridge / ellahope) and it was a blast, and a very big success! We had a great time and got to catch up with lots of high school friends.
We got home yesterday afternoon and will head back to the cities tonight to fly out to NY on Monday morning. Peter will have the full gamut of tests again this week. It’s hard to believe it’s already been 3 months since the last round. We are cautiously hopeful that his HAMA level will be lower again; maybe even low enough to get some treatment in the near future? They assure us his level will come down; but some kids’ levels come down in 2 months; some kids in 6 or 9 months.
Best of all, Peter has been able to spend a lot of time lately being a normal kid. I asked him the other day what he wished for, and he said “Well why don’t wishes usually come true?” I said, “What makes you think that?” and he said “I have wished to be happy all the time!” So I guess he has pretty high standards. He is about the happiest kid I know – it’s pretty rare that he gets down or upset.
Well enough of my rambling (once again you can see why it’s a really good thing that Uncle Matt does the writing!) We will get pictures posted of Disney, Camp Sunshine, etc. Matt is working on a new photo album!
We appreciate your prayers as we head into another agonizing week of testing!