Month: November 2007

I hope everyone had a wonderful Thanksgiving holiday. Just before turkey day, Peter visited the Pediatric Nephrologist in Minneapolis to check out his kidneys. She couldn’t identify any specific reason why his damaged kidneys would be causing his hypertension (high blood pressure), so she suggested weaning him off the BP medication and testing his blood pressure twice a day at home. In general, she was pleased with the condition of his kidneys.

That sent Ty and Erika into a scramble to find BP equipment with a small cuff size and as of Wednesday night, they hadn’t any luck. That is until family friends, the Christiansen’s, sent out nurses twice a day from their own home health care business, starting on Thanksgiving morning. And that continued until another friend, Dave Cohen (father of NB warrior Jacob), could overnight his BP equipment to them. So thanks to all who helped out.

However, his blood pressure is still high so he’s still on the medication. He has mainly been doing very well, but he’s been getting really nasty headaches in random spurts and he’s tired in spells. They thought he was going to throw up in the car due to one of his headaches and he was writhing on the floor at daycare yesterday battling another one. The accutane does not typically cause headaches, so maybe it’s blood pressure related. Luckily they have an appointment in Minneapolis on Thursday with Dr. Weigel for a check up and echocardiogram. Maybe that appointment will shed some light, but in the meantime, each headache increases concern.

Cookies
There is a fundraiser going on right now that might help you out with Christmas shopping while helping MSKCC improve on the antibody treatment that Peter is receiving. Peter is receiving 3F8 antibodies and has built up immunity to it twice. Sloan-Kettering needs funding to improve the 3F8 antibody treatment by humanizing it, hopefully eliminating the patient’s rejection of the antibody. The Band of Parents are baking cookies to fund this effort. Visit the site with the link below and read a much more thorough explanation of their mission.
Cookies for Kids Cancer

CHECK
Ty and Erika have taken the initiative to start a non-profit to fight cancer and to help kids and families battling cancer today and in the future.  The foundation is called CHECK, Coaches Helping Eliminate Cancer in Kids. Ty — a Minnesota high school hockey coach — took his story and a challenge to the rest of the high school hockey coaches in the state. The coaches enthusiastically accepted the challenge to raise $1000 per team this year (and there are a lot of hockey teams in MN).

That’s the good news. The bad news is that the foundation needs to be legally set up and organized quickly and there are more questions than answers right now. Ty and Erika are looking for an enthusiastic guide for this process. If you have any resources or referrals in the area of 501c3 status, be sure to let them know. I know they’re not looking for volunteer work, just a trusted partner.

The Skate With The Irish event is going on Wednesday night, the 21st, at 7:00. Check out these awesome items available for the silent auction.

• team signed Colorado Avalanche goalie stick
• team signed LA kings Jersey
• real game CC jersey
• Houston Aeros jersey – autographed
• Wild blanket
• a couple knee hockey sticks
• Autographed Dallas Stars puck
• Autographed Eric Johnson stick
• two winter season passes to RHS sports
• …and more

Thanks again to all of you putting on this event (and attending). It should be a great evening. Go Irish!

Hello again! November has been refreshingly uneventful, although that’s only relative to some wild months. There are many activities taking place in the fight, but Peter and family have had more normalcy in day-to-day life than they have in a long time — probably as much as anytime since diagnosis 15 months ago.

First of all, Peter looks fantastic. He has been on an appetite enhancer that’s helped to fill him out again. You can see for yourself how good he looks from this picture at the Children’s Cancer Research Fund Gala. Here he is, with Parents, in front of his award-winning butterfly drawing. In fact, he was so dapper that he made the rest of us look like bums (Except you, Erika. You look great).

As treatment goes, he’s on cycle 3 of accutane. These are the pills that can cause headaches, irritability, and skin dryness. All side effects have been worse this round, but he’s doing very well. His blood pressure has been monitored consistently, since it was recently high. It has been in check with help from additional medication.

On Tuesday he’ll be in Minneapolis for a meeting with the Pediatric Nephrologist to check on his kidneys. The hospital in NY is requesting another renal scan, so maybe they’ll do one, but they’re not sure exactly what will happen during the consultation.

The next scheduled appointment is on the 29th. He’ll be back at the U of M for an echocardiogram, blood work, and a meeting with Dr. Weigel. Blood will be drawn and sent to NYC to test his HAMA levels. In review, this level determines when he can continue with the antibody treatments in NYC. He is currently HAMA positive and his levels have been dropping. When he’s HAMA negative, he can resume treatment.

If he is HAMA negative, which would be great, then the 3F8 antibody treatment may interfere with Christmas plans. Not ideal. But the current schedule only shows another early January trip to NYC for testing, so we’ll see.

Finally, one of Peter’s friends that he met in the hospital in NYC needs the prayers of Peter’s People. Little Gus, from Miami, and his family, Gus, Theresa, and brother Miguel became close with Peter and family during their trying times. They’re a fantastic family and Little Gus’ blood counts are staying too low to undergo the surgery he needs.
Click here to visit his site.

On Wednesday, November 21st, the annual Skate With The Irish benefit for Peter is happening at the Rosemount Ice Arena. The event runs from 7:00 to 8:30 PM. Fans off all ages should bring skates and hit the ice with the team. There will also be player pictures, trivia contest, bake sale, music, raffles, pizza and more.

The Rosemount High School Coaches and Blue Line Club are doing this for the second year in a row and donating all proceeds to the Peter Eigner Benefit Fund. Thanks for your efforts and generosity! I look forward to going and I hope to see you all there.

Even though we had our first sighting of snow yesterday I can tell you that the entire family is very excited to be home. We are again trying our best to get back into some kind of normal routine. Although with three children five and under, Normal and Routine do not usually go together. Peter is back at school and really enjoying it, Ellie also goes two days a week and Kate demands to go into school when Erika or I drop off Peter or Ellie. As Uncle Matt said, the trip to NYC turned out to be not much of anything, but we still made the best of it. We are not dissappointed that Peter did not get the stents put in, being that his kidney function even though decreased is still fine. His blood pressure has come down to the “high end” of normal, and after all his body has been through we can live with that. Peter looks great, is eating very well, has very good energy and is starting to fill out again. We look at all those things as very positive. Peter and I did get a chance to go to New York Presbyterian Hospital and see some of the Doctors and Nurses who did such a fantastic job. It is a very humbling feeling thanking someone for helping save your son’s life. As it is just as humbling saying “thanks” to all of you for your generosity, love, support, prayers and caring. We are truly very fortunate and would not have been able to get to this point without all of you. This past Saturday Peter, Erika, Troy, Michelle, Gramma Mary, Matt, Michele, Gramma Poopster, Grampa Poopster and I attended the Childrens Cancer Research Fund Gala and had a great time. Peter looked great in his tux and fancy hair! We are so proud of him for not only his butterfly drawing, but for how he has handled this whole thing and what he will become in the future. Well I won’t ramble, I just wanted to touch base prior to next Monday when hockey starts and the ROUTINE really gets fun!

Ty

Well what do you know, things didn’t go exactly as planned yesterday. After waiting around in the hospital for a couple hours, the procedure finally started. When the procedure concluded, Peter did not receive a stent in his left kidney. It turns out he didn’t need it, because there wasn’t a blockage. Dye was injected into his system and apparently showed a clear passage. I suppose that sounds good, but the fact remains that his kidneys are damaged and not behaving properly. I wish I could provide more clarity about his kidney status, but I really can’t. Peter will be referred to a local kidney specialist for further evaluation when he’s back at home.

The day was long at the hospital and, although Peter did get into costume and got out of the hospital, he wasn’t up for trick-or-treating in the evening.

I don’t think I mentioned it before, but Peter’s blood pressure was high when he arrived at the hospital earlier this week. Today they had an appointment at the clinic and his blood pressure was still high. The reason is not known.

In total, I think yesterday and today have been frustrating due to long waits, some misinformation, and a lack of resolution or a sense of progress. But he’s through another procedure without complication. Even though the Eigner’s can’t check off a medical milestone on the trip, Peter is still moving forward. He’s still fighting on down the winding road to full health.