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.
Hi Peter and Family!
We are praying for excellent news on Thursday to put all worries to rest, and easy answers AND immediate relief from the nasty headaches and high blood pressure. Peter so many people love you and pray for you fervently! May God always hold your dear family close to Himself and give all of you confidence in your complete healing and bless you with good health always and NO more complications.
I am SO excited to read about the plans for CHECK!!!! What an awesome way to create focus on such a devastating problem such as this particularly tough pediatric cancer! I am hoping some very astute person steps forward to get the 501c3 rolling right away! This is a great idea!!!!
Praying for you all,
Ludwinskis
Those sound like some mighty nasty headaches–the description reminds me of the migraine headaches that I get. I hope you get some relief from those Peter. You are ever in our thoughts and prayers. Ann
CHECK!! How cool. Try calling Jean Baruch or e-mail her about how she set up the Beads of Courage. Her father-in-law helped her. I’m sure she would be able to help you out. By the way Peter I hope your headaches get better soon.
Hey Guys! I’m glad to hear things are going well. I hope the headaches go away and Peter’s blood pressure stabalizes. We pray everyday for Peter and your entire family.
As you may or may not know, my youngest, Cameron (4) has autism. He was diagnosed @ 18 months. Go to the website http://www.autismspeaks.org and click on the founders message. Bob & Suzanne Wright started Autism Speaks. I’m very confident Bob and Suzanne could be a great network resource helping you get CHECK off the ground. They are both very nice and approachable people!
Hope to see all of you soon. Keep fighting! As I’m typing this, I just looked up and say the reflection of the shirt I’m wearing…’Peter’s People!’
Take care,
Bob ‘Bouncin’ Pilon
Bailey had severe headaches with accutane and it was believed to be caused by increased intercranial pressure. We almost had to discontinue the accutane because his headaches were so severe. To this day, he still gets headaches relatively easily and he has been off the accutane for two years. We found that we had to start each round at a lower dose and gradually work up to the max dose to alleviate the headaches. We talked about pre-medicating him with tylenol or motrin before each dose, but Dr. Matthay did not feel this would be a good idea because it would just mask the root of the problem. I don’t want to scare you, but I want you to know that this may be what is happening to Peter.
I love CHECK! I would love to bring that program out west to our ice arena to help you raise funds! Let me know once you have more details worked out!
Kelly
Hi Peter,
It snowed about 8 inches here in River Falls so last night I went out and made a snow angel for you! I hope you get to go out and enjoy the snow. Have a wonderful christmas Eigners!
Love,
Mary Virnig