Author: Uncle Matt

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.

Sorry for the gap in posts. Let me get you caught up on all the activity from last week. The Eigner’s came to the Twin Cities on Sunday, 2/18. Peter was scheduled to have a lot of testing and Erika and Ty were scheduled to have some informative meetings.

All of the work was outpatient last week, and it provided Ty and Erika some flexibility and quality time with Peter while he is feeling well. And he is feeling well. My wife and I had the pleasure of hosting the three of them (while Grandma Mary had the girls) and I can attest that the old Peter enthusiasm and charm are in full force.

The activities were as follows.

Monday, 2/19

• Initial meeting with a Bone Marrow Transplant doctor
• Chest x-ray and EKG
• CT scans of head/neck, chest, abdomen/pelvis

Tuesday

• Bone Marrow Biopsy (went under for this)

Wednesday

• GFR for Kidney Function
• Toured future home in 4A and met with social worker; This floor is much quieter than 5B

Thursday

• Bone Scan
• Echocardiogram

Friday

• DMSA scan (liver and kidney)
• Nurse Coordinator meeting – went over drug combination, side effects, calendar, general “what to expect”
• Hickman consultation
• Audiogram

So there was a lot of activity and there is much more to come. One reason for all of these tests is to provide the patient’s full picture for the BMT (Bone Marrow Transplant) team. This team will be taking over in some ways over the next couple weeks.

All of the detailed test results aren’t known at this point, but we do know that the bone marrow biopsy and CT scans look completely clear again! That’s always reason to celebrate. They also received results of the Audiogram for Peter’s hearing and learned that his hearing has deteriorated so that he’s only hearing the speech range. This is expected news, but obviously news no one wanted. Hearing aids aren’t going to be helpful at this stage, but may be necessary in the future. That chemo is rough stuff.

Peter’s had the pleasure of meeting some new friends during his time in the hospital. One of his new friends is Mary Virnig. Mary would be a college freshman if she wasn’t diagnosed with Neuroblastoma at the same time as Pete. She has been going through this same battle in Unit 5B and has been a great support and friend to Peter. When Peter finishes a test or procedure, there’s Mary (and family) to see how he’s doing. Keep fighting, Mary!

Peter also shared a room with a four-year-old named Noah a few weeks back and, boy, did they have a good time. With Noah’s help, the room ceased to be in a hospital; It felt more like a playground with two padded pommel horses. Thanks, Noah. We hope all is well.

Correction: Peter was actually released yesterday afternoon. The word came that they could leave just after I last spoke with Erika, so sorry for the confusion. He received some more platelets and was on his way.

The Eigner’s are not due back at the hospital until 2/19 to start the Work Up Week. During the work up, Peter will go through all the tests again (marrow, bone scan, CT scans, etc) in preparation for the final round of chemo and marrow transplant. This should be outpatient work, so they’ll at least be free from the hospital at night.

But until then, Peter can enjoy his home and sisters while getting strong for the home stretch of treatment.

Peter is still in the hospital, but he hasn’t been acting very sick as of late. The report from Tuesday night was that he was being a four-year-old, meaning that being in a small hospital room with him for hours on end might make one ready for a massage and some aromatherapy (gift idea for Erika?). Of course the fact that he’s been energetic — or rambunctious — is great news.

In other good news, the blood cultures came back negative; He doesn’t have an infection and that’s one less thing to worry about. Yet his counts remain low and that keeps him and his parents bound to hospital life. Let’s hope they are released today (Thursday) with Peter’s body in full recovery after the punishment of round 6.

Last night Peter’s temperature was high enough to require a trip to the ER in Brainerd. He checked in with a temp of 101.8. His blood counts were measured and platelets, hemoglobin, and white blood cells were all extremely low. They took blood cultures to determine if there’s an infection and sent the Eigner’s on a midnight trip to Minneapolis.

They arrived at about 2 AM this morning — six hours before they were scheduled to come in for the standard transfusion. Peter is doing alright and his mouth sores seem to be a little better. The transfusions started this morning and are going as scheduled.

However, they’ll need to stay put in the hospital for another couple days instead of just checking out after the transfusions. The cultures from last night won’t be back for another day or so. If they learn that there is an infection, I suppose it could extend the stay somewhat, but in any case they need to see his counts start to rebound before heading back home. Peter is going to be fine though this. The “path thing” is not.

No news is definitely good news in this case. Peter is doing well and actually feeling pretty well still. His blood counts are on the way down and will probably bottom out over the weekend. If the counts get too low, a trip to the cities for a transfusion could be necessary, but hopefully not.

The big Dodgeball Tournament/Benefit took place this past Saturday and what a time it was. I really didn’t know what to expect from the day, other than a good time. So when I entered the dodgeball facility and saw so many players — mainly tall, strong and 8-10 years younger than my team — my expectations also included adrenaline bursts and some pain.

The competition was fierce, friendly and deep. Everything was beyond expectations and I’m happy to report that my muscles are no longer sore, but I had a noticeable gimp on Sunday. Thank you to all participants, spectators and to those who donated. And a mega-thanks to Molly Zauhar for an incredible job putting the day together.

Peter started round 6 late on Monday and has been taking it in stride all week. He’s peppy and having a good time, actually, in part because they were holding Camp Get-a-Well-a at the hospital. The “camp” meant that the patients got t-shirts and extra entertainment, such as a magician.

Today he’s playing bingo through the closed-circuit game show — the one that he previously co-hosted until he had to go wee and left the set.

All is well. The Eigner’s should be leaving the hospital tomorrow morning (Friday) to head home, where Peter will feel the effects of chemo, battle through, and recover for the start of his next treatments.

The checkup yesterday went about as well as could be expected. The doctors were happy to see our little guy fully recovered. Peter doesn’t have any remaining pain and he’s running about as normal.

The hearing test revealed that he doesn’t have any further hearing loss, at least in the normal hearing range. That’s a great sign, but there’s two big rounds of chemo to go. Peter will come in on Monday morning to begin the 6th round and stay in the hospital for another 5 days or so.

On a side note, I have entered a team in the aforementioned dodgeball tournament, so let the trash talking begin. If anyone out there wants to leave a comment in an attempt to get in the opponents’ proverbial kitchens (and to encourage Peter), bring it on. On 1/27/2007, flesh and egos alike will be bruised.

Have a great weekend.

Peter’s recovery is going well. He takes more regular naps, so he’s a little more tired, but that’s not a bad thing.

On Thursday, Peter will be back at the hospital for a check up with the doctor and a hearing test. Then the plan is to start another “normal” round of chemo next Monday, the 22nd. That will probably require a lengthy recovery period as we’re seeing cumulative affects from the previous rounds and operations. It’s hard to witness these later chemo rounds and their toll on Peter, but they’re taking a bigger toll on the path thing. Peter’s making it clear that he can handle it.

There are lots of new photos here.