Peter’s Page

We had a fun weekend. Friday night we had dinner with Uncle Matt/Auntie G (almost a nightly ritual!), watched the Twins game. Saturday we had some flag football activities, then went to cousins Macy & Brooks’ birthday party; and on Sunday Peter was able to go to the Twins game with Grandma & Grandpa Hanson and Uncle Matt. He didn’t catch any foul balls but it sounds like they had fun!
On Monday morning we made into the parking ramp at the U before getting a call that Peter’s treatment had to be postponed. It wasn’t a preventable situation; just a timing issue with the insurance and they believed it would be squared away by Thursday. We had his arms all numbed up, ready for the poke(s)! No matter – he was ecstatic to put this off for a few more days, and wanted to know if he could go to school! We were still able to meet with Dr. Weigel & Jody (our wonderful NP) and discuss the treatment & possible side effects. The Rituximab is a drug they administer a lot of; typically for lymphoma’s. This is a good thing – they are very familiar with it. The most common issue is immediate reactions to the drug, which can be severe, so they administer it very slowly and have an arsenal of drugs available in case they need them. He will get this infusion on Thursday and again in 2 weeks. It targets B cells so it will put him at a higher risk of infection (particularly viral) for awhile, but won’t lower his counts in a sense of making him neutropenic (like he would get each round of chemo, which targets T cells). The day after the 2nd Rituxan infusion he’ll get Cytoxan, and this is a chemo he has had. This dosage is just over half what he had before, and they anticipate some nausea and that he may be a bit wiped out for a couple of days, but that should be it. They do expect his hair to thin at the very least; maybe fall out since he’s had so much treatment. I told Peter and he said, “well I’ve been bald before!” I guess that didn’t bother him too much! I worried this might not go over so well now that he’s 6, in school, and is much more aware than he was at the age of 4. He said he told his class that he has cancer. I think it’s good because the more kids can understand his situation, the more normal he will feel, and that’s what he loves… to be normal and do normal kid things!
First flag football game tonight – he told me on the way home that his team lost 1-0. I’m not sure what kind of scoring system they use in Flag Football, but I agreed. Then he told me that he is slower than all the other kids, “but”, he said, “I probably practice my moves a lot more, so I am still really good!” … I love it. Always finding the silver lining.
Thanks for your ongoing prayers for Pete, and please pray for our friend Ella! (http://www.caringbridge.org/visit/ellahope)

I don’t want anyone to fall off their chair in disbelief, but our plans have changed! I know you’re not surprised; I wasn’t.
Peter tested HAMA-positive again. In the past we have just had to sit back and wait for his HAMA level to come down (it took almost a year this time), but ideally he would be getting the 3F8 treatments more frequently/consistently, and certainly we look forward to getting to a point where he done with his treatment, and just continues testing every few months! Well, they now have a treatment that lowers the HAMA level. It has only been used with a few kids but has relatively minimal side effects, has worked well to date, and he can do this part locally.
So this Monday, instead of being in NY, we’ll be at the U of M. First we will meet with his local oncologist, Dr. Weigel, who we haven’t seen in quite some time. We really admire her & miss seeing her and the rest of the staff at the U; they are outstanding at what they do & we respect their expertise & opinions. Then he will get a poke & start a 6-hour infusion of Rituxan, which is actually an antibody itself. 2 weeks later he will repeat this infusion, and the following day he will get a low dose infusion of Cytoxan (a chemo he’s had before in a much stronger, longer dose). They infuse slowly as kids can have reactions, etc. We hope for no issues!
We will then re-test his HAMA level and proceed accordingly (to NY if he’s negative, or another cycle of the Rituxan/Cytoxan if not).
To Peter’s delight, this means he misses less school (for now)! First week is going great, except he came home with almost his entire cold lunch, and quite a bit of work to do, and when we asked him why he said because he likes to talk and eat… and talk and do his schoolwork. Ok, so we might have to work on that a little, but at least we know he’s enjoying himself! We have early conferences tonight, then flag football. Ellie started gymnastics this morning and all 3 will start swim lessons soon, since we had to neglect those for a couple of years. Oh yes, hockey is right around the corner too. Life is busy, but great!
While we plow forward with life, we always remember our fellow NB / cancer friends; we’ve seen quite a few lose their battles lately and feel more blessed than ever to be where we are.