Peter’s Page

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.

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.

All is well at home. The kids all have colds, but I don’t think I know anyone who has not had a cold, the flu, strep throat, or some combination of, this winter! Peter’s counts should still be on the rise and a nurse will come out tomorrow and do labs to confirm.
Bone Marrow Transplant (BMT) is quickly approaching. We’ll head to the hospital at 8:00am on Monday, Feb 19th to start Peter’s “Work-Up Week”, where he’ll undergo all of the original tests & scans, bone marrow biopsy, and some additional doctor appointments. I think Ty & I are in for a major debriefing too, which I look forward to, since I’m the one who needs to know all the details. They will make sure that he has no infections or anything that will delay this process.
He’ll be admitted the week of the 26th and begin the high dose chemo (to completely wipe out his system) which lasts 4 days, followed by 3 days rest and then the actual transplant/stem cell rescue. As far as I know the transplant itself is a pretty short procedure – 4 hours maybe? It’s the recovery period that is tough. We expect Peter will be hospitalized for about a month starting 26th. Once out of the hospital he’ll need to remain close to the hospital for awhile.
They encourage the kids to decorate their rooms and make them their own since the hospitalization is lengthy and transplant can be a rough road. We all know Peter loves nothing more to be surrounded by friends and family. While we believe visitors will be welcome, they limit the numbers to maintain the air quality, so we asked Peter if he would like to have some pictures for his walls, to which he yelled “Yes, Yes, Yes!” If you can, we’d love for you to send him a picture – a picture of you, a picture you draw, a picture of you playing a sport or your pet or whatever you want!!
Please send them to “Uncle Matt”:
Matt Hanson
6520 Leesborough Ave
Eden Prairie, MN 55346
Speaking of Uncle Matt, I was just reminded again of how wonderful it is that he is doing this website. Since I’ve been typing away and Ty’s downstairs with Peter & Ellie, Kate just made her way up on to the kitchen table and spilled a glass of milk all over the floor… gotta go.

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.

Unfortunately this doesn’t just refer to the fact that we’re staying in the house because it’s so frigid out there, but also refers to Peter. He is definitely hitting bottom – he woke up from a long nap yesterday complaining of sores in his mouth and was running a temp last night, which was just below the threshhold for having to go the hopsital and be admitted. He is tired, without much energy and is pale. He is scheduled to have platelet and blood transfusions tomorrow. Those should give him some of his color back, as well as energy. Today we are hoping he can fend off more fevers so we can go down only for the transfusions, and not for days of hospitalization!
Despite these occurrences, which aren’t unexpected, things have been great at home. He is happy to be here with his sisters, although I’m sure he’d like to get out and about more. Other than a few rides in the car, I don’t know that he’s left the house for over a week. We hope to remain here (other than the transfusions) this week and next before the long stretch – Bone Marrow Transplant. His “work-up” week, consisting of 6 hours a day of doctor appointments, scans/tests, and meetings, is to begin on February 19th.
Thank you for continuing to follow Peter’s journey, your prayers, thoughts, wearing of wristbands, etc!
It’s Super Bowl Sunday… enjoy!