Month: February 2007

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!

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.