This page has been created to keep family and friends
updated about his illness and treatment. It has also turned into a medical record of sorts for us to refer back to, as well as therapy for Mom. So, please forgive us if it seems like too much information at times!
Kevin was first diagnosed with
Acute Lymphoblastic Leukemia
at 4 years old on February 10, 1998, less than 2 years after his big brother Brian's leukemia diagnosis. There are still some old pictures and updates online: 1998-2002 Journal from that time.
Here is Kevin with Dr. Perdahl in August 2000, after 2-1/2 years of chemo, when she did his final bone marrow aspiration to confirm his remission.
After two and a half years of chemotherapy
and over three years off treatment,
Kevin relapsed on October 30, 2003 at 10 years old.
What can you do to help??
Kevin received many blood products, averaging 4 per month.
If you're healthy, one thing many people can do is donate blood and/or platelets. Kevin received blood and/or platelet transfusions at least 4 times a month over the last year. Kevin's blood type is "O Negative". Click here to find out how to donate blood or platelets:
Second, sign up on the registry to donate bone marrow.
.
A bone marrow transplant would be necessary if Kevin does not maintain remission on his current treatment (we pray this won't be needed, but another child could benefit from your marrow if you register). Oh, and if you're expecting a baby, there's always the
Cord Blood Bank
Kevin's relapse treatment followed the POG 9411 protocol for the first two months, and then POG 9310 which included rotating pairs of chemo drugs each week for 104 weeks (weeks 1-5 are repeated over and over). The drug combinations used are listed below:
Week 1: Vincristine, Etoposide (VP-16)
Week 2: Doxorubicin, Cytarabine (ARA-C)...now we skip Doxorubicin and ARA-C is reduced
Week 3: Spinal Tap with intrathecal Methotrexate (injected into the spinal fluid), PEG-L-asparaginase (Intramuscular shot)
Week 4: Cyclophosphamide, aka Cytoxan, Prednisone
Week 5: IV Methotrexate, Mercaptopurine (6MP), Leucovorin
Here is a site that explains blood counts.
Normal Blood Count Range
White Blood Cells (WBC): 5,000-10,000
Absolute Neutrophil Count (ANC): over 1500
Hemoglobin (HGB): 11.5-13.5
Hematocrit (HCT): 34-40%
Platelets: 160,000-500,000
Kevin is our miracle boy! On Labor Day 2004, we rushed him to the hospital with severe stomach pain. The diagnosis was typhlitis, a rare complication of Week #2 above. Essentially, the white blood cells lining of the intestine are destroyed by the strong combination of chemo, allowing bacteria to enter the bloodstream. He went into septic shock within hours and we almost lost him before morning. But Kevin is a fighter. He was on a ventilator for 3 weeks and spent a month in ICU with acute respiratory distress syndrome and many other complications. The next month was spent in the oncology floor of the hospital, during which he had surgergy to remove the portion of his colon that was damaged from the typhlitis. Those nightmare days and nights still haunt us, but thanks to God and Kevin's wonderful medical team he is enjoying a normal teenage life.
Kevin's doctors modified his treatment roadmap to get him through the remainder of treatment. His treatment was stopped just before Thanksgiving 2005 and on December 9th, his ostomy was closed.
This is probably way more than you wanted to know, right? We hope that our journey will inspire others who are sick or who know someone who is -- some of the lessons we've learned along the road are the power of prayer and just how good people are! We've been so blessed, and we hope to "pay it forward" whenever possible.
Thank you for stopping by to check on Kevin and our family. Please pray for his continued remission and health.
Journal
Saturday, September 18, 2010 3:58 PM CDT
Wow - a whole YEAR has gone by...uneventfully! Well, not exactly true, but medically it was. :)
Kevin is a senior now, and doing great. He favors a buzz cut now but is camera-shy these days.
Thanks for checking on us!
Love,
Lisa
Read Journal History
Hospital Information:
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Links:
http://dccandlelighters.org Candlelighters of the DC Metro Area
http://candlelighters.org National Candlelighters
