Month: March 2007

Peter will be done with the round 7 infusion at about 1 AM (in 12 hours). He had some nausea and vomiting yesterday, but last night he was active and feeling good. And this morning he woke up feeling well again. He even ate a little breakfast. He’s handling this treatment exceptionally well so far.

His blood counts will be in steady decline now and everyone expects that the next week is going to be rough. Yet he’s always seemed to beat the expectations and we’ll hope for the best. They are starting to add nutrients through his IV proactively, as his appetite is almost certain to disappear for a while.

The news from the doctors has been very reassuring since yesterday. First of all, the “mass” that was mentioned by the BMT doctor was identified by the surgeon as an accessory spleen. Apparently 10% of us have extra tidbits within us and Peter runs heavy on spleen! It looks like a generic mass on the scans, but the surgeon was quite certain he knew what that was and that it wasn’t any recurrent growth; The little nub of a spleen may have fanned out a bit since the tumor was removed. Another doctor today expressed how well Peter is doing overall and specifically with this difficult round of chemo.

I’ll offer this photo as proof of the points above. He’s out of bed and looking good. And there are a few more photos here.

The phone number we had on the previous post was incorrect. It is (612) 273-0227. We’re in Room 4-210 on Unit 4A.

The journey is underway! Peter started chemo late Monday night and 2 of the drugs run in continuously over 4 days, the third drug is infused over an hour on 3 of the days. So he’ll finish the chemo around 1am Saturday morning. So far he is doing great just like a normal kid. The mood is different here on 4A. It’s much more quiet and you just get a sense that there are rules here. Leave coats outside the door, no feathers of any kind in rooms (ie: pillows), a lot of shoes sit outside doors, there’s soap outside every door, and speaking of doors – they are all closed! If your door remains open for over a minute, an alarm goes off. Air quality is very important. The entire staff is also ICU-certified, meaning if a patient needs Intensive Care, they do not move the patient. That is the reason we can’t have cell phones on the floor – interferes with equipment.
I think what we are expecting at this point is for Peter’s counts to “bottom out” sometime next week. This is something we are used to, although maybe not the degree we’ll see this time? And then the next step – after his cells are put back in (the transplant) – we just don’t know. That’s when the going get’s tough. The side effects that can occur are infections, mucusitis (sores in the mouth which can travel down the GI Track; this is a very common effect with neuroblastoma kids); liver problems, lung or kidney problems. The doctor was just in and said almost 100% of the kids get severe mucusitis, and we will hope that he won’t need a breathing tube. He also told us that he probably won’t be that interested in eating as his mouth and throat will be very sore. So we are trying to fatten him up while he feels good and the Dr. said they will provide plenty of pain medication to make Peter comfortable. With all that said we can’t help but be positive, since Peter has been so great!

Finally, here is the phone number to Peter’s room 612 273-0027

Thanks for everything, we are so appreciative of all your prayers and support,

Erika and Ty

Peter and parents had their consultation with the BMT doctor yesterday and it was a grounding experience. Their original impression about the BMT was that the procedure itself is fairly simple, while this final round of chemo is to be a difficult dose. Over the past two weeks during the work up and testing, the real risks have become more clear.

Yesterday’s consultation crystalized some realities. They were reminded of how Neuroblastoma is one of the most difficult childhood cancers to survive. They were made aware of a small remaining mass in Peter’s abdomen; While this mass didn’t “light up” as cancerous in the scans, they didn’t know about a remaining mass (this is causing some confusion that will be sorted out). They learned that as well as Peter is doing, in a perfectly disease-free scenario, the high chemo dose and BMT wouldn’t be necessary. And they heard about all the risks of this aggressive treatment, such as infection. But the ultimate risk is that some don’t survive this 100-day journey.

Everyone is positive. This news is just a reminder of what a white-knuckled ride that Peter is still on (highs and lows, twists and turns). I’ll try to get  more specific information about the new developments, but please keep the Eigner’s in your thoughts. The next few weeks will require more strength than anticipated.

Sprinkling a little more good news here…

Peter had a couple scans yesterday — one was specific to the neck and another showed the cells of the entire body. The results were returned this morning and both came back clear; They were free of cancerous cells.

The neck scan was scheduled kind of abruptly since they noticed they didn’t have a detailed neck scan on record. Even with Ty and Erika’s even demeanor, minor glitches like this can create some lingering concern. Now they can go into the weekend knowing Peter is strong and ready to begin the final round.

Peter and family arrived back in Brainerd last night, just before the big storm. They were in town for a couple more tests and a consultation this week. He was complaining about some pain around his hickman (lines in his chest) and they seemed to fix it without much trouble. I don’t know much about the test results at this point and probably won’t until Monday, but I do know that his hearing is probably a little worse than previously thought. He has lost some frequencies within the speech range.

Next week the real treatments fire up again. After a thorough meeting with the Bone Marrow Transplant doctor on Monday to cover the possible risks, side-effects and benefits of the BMT, Peter will be admitted to the hospital (I think in the new location on 4B). On Tuesday, March 6th, the final knockout round of chemo begins and lasts for four days. The round is powerful and meant to completely wipe out his system. Writing that makes me shudder. Yet to think that this should be his last round of chemo EVER is cause for some cautious excitement.

Tuesday, March 13th, is day zero — Bone Marrow Transplant Day. They refer to this as day 0 on the 100-day journey. Most patients are hospitalized for five weeks, recovering and battling mouth sores. The Eigner’s will be tied to the hospital for a long while beginning Monday. And the rules change somewhat in Peter’s new home on 4A, the BMT unit. First of all, no cell phones allowed. How the heck did we survive just a dozen years ago? I’ll post the room phone # once it is established. Also, there are strict visitor restrictions. I believe there can only be three people in the room at a time or something.

Additional activities during the 100-day journey include radiation beginning around day 26 and some to-be-determined antibody treatments beginning around day 66. And that will take Peter right through the summer into the fall.

As great as Peter is doing, we’re sensing this journey is going to be difficult. Thanks for all of your continued support. Thanks for all the decorations that are ready to decorate his room. And thanks for all the prayers.