Join us as we support our old school friend, Mark Berggren's son, Nils, and his whole family.
Nils passed away in last month at the age of 14. Strong. Optimistic. Resilient. These are words that describe Nils and the Berggren family. These are also words that we must live by to be confident in the victory over cancer.
Here is a note from Nils and his experience before.
God Bless Nils. His memory lives with many forever.
I have been going through a really rough time the past 7 weeks at Seattle Children’s Hospital. Many of you may know, I moved here from Singapore for further treatment of skin GVHD from the stem cell transplant I had. The doctors in Seattle are doing every thing they can to help me. I had a new apheresis line inserted into my chest to allow IV meds to be administered more easily and for ongoing procedures I constantly need. I developed congestive heart failure, which is when a balloon of fluid builds up around my heart and makes it very hard for me to breath. In surgery the doctors inserted a tap into the balloon to with draw 1.7 liters of fluid! I felt much better. But I was still retaining fluids. I had a kidney biopsy that showed my kidneys are functioning at 30% due to chemo damage, GVHD drug damage, Thombotic microangiopathy (TMA) (and BK virus nephropathy due to my immune suppressed body). High doses of Prednisone steroids are still used to keep my skin condition tolerable. It is still flared and itchy, but pealing less. I am still doing ECP treatment 2-3x weekly (removal of my blood which cycles thru a light photosynthesis machine and returns blood back to me).
I am THE FIRST PATIENT at Seattle Children’s Hospital to use a new drug today: Eculizumab/Soliris to stop the further development of the Thombotic microangiopathy (TMA). I was put on a CCRT (Continual Renal Replacement Therapy) machine (like a dialysis machine) to remove the extra fluid in my blood over 24 hours. I will most likely have to have dialysis treatment 2-3x weekly.
Today I had a second lung biopsy to further understand why the fluid is building up in my lungs: if a virus is causing it. They found blood was collecting in my lungs and they do not know why. They inserted a feeding tube to help me regain strength since I am so weak, and they inserted a breathing tube to push the erupted blood cells back to heal. I am stable but will be sedated for the next few days.
My sister came to see for 3 weeks me!! She is on her way to Singapore to finish her freshman year. She will come back to visit me during Spring Break. I got a couple of Hall Passes from the hospital and made the local news when I went to see the Christmas lights on Candy Cane Lane! I got to throw a snowball too! Kam Chancellor from the Seahawks came to see me and autographed all my things.
Please help me fight this next battle.
Wishing you all a Happy 2014 New Year.
I will beat this!
Love, Nils
— with Nils Berggren.
