This is my upteenth time at getting a post going. Finally with Kim's help I am ready to try this process.
I want to use this forum to reflect on different challenges that we encounter in our lives. And hopefully - offer someone else hope.
Welcome to our journey...
April 16, 2006 at 04:27 PM EDT
Dear Family & Friends,
Although we have not been able to contact each of you directly, many of you have been asked to keep our family in prayer over the past few weeks and to lift Matthew up in prayer especially. You may be aware that Matthew has been back and forth to the hospital for various problems these past few weeks and has had to receive several blood and platelet transfusions. This letter is to explain what has happened and the direction we are going.
First of all, Matthew was born with a genetic birth defect called Shwachman syndrome. This syndrome is distinguished by pancreatic insufficiency, hematologic abnormalities, including increased risk of malignant transformation, and skeletal abnormalities. As an infant, Matthew showed early problems of failure to thrive, feeding problems and recurrent infections. He also has the short stature, developmental retardation, and bone marrow dysfunction common to this genetic disorder. As a result of the bone marrow dysfunction Matthew has had low levels of white blood cells (neutropenia), platelets (thrombocytopenia), and red blood cells (anemia) throughout his life. He has been treated for these various problems as symptoms arose.
After a long weekend (3/5/06) when Matthew seemed to be very tired and became quite pale, we brought him in to see his doctor (3/8/06), fully expecting to hear he had the flu. Instead we found out that he had dangerously low blood counts and would have to go to the emergency room (3/9) and then be admitted to the hospital (3/10) for blood transfusion and platelets. Two days (3/13) later we returned to the hospital for further tests. These blood tests should a large number of “blasts” and the doctor began to talk with us about pre-leukemia. A week (3/20) later Matthew underwent a bone marrow biopsy and aspiration. One week (3/27) after that we found out he has been diagnosed with Myelodysplasia (a secondary bone marrow disorder). Two weeks ago (4/5) we went in for what we felt was becoming a routine blood test and additional testing on Zachary for a blood type match, and found that Matthew had pneumonia. We spent 3 days in the hospital with that. This past Tuesday (4/11) Kim and I met with the BMT (Bone Marrow transplant) doctors. Wednesday Matthew and I went back to the clinic and he received another transfusion of platelets.
So, what does the future look like? This week we go back and the doctors are considering placing a nasogastrostomy (NG) tube to help “beef him up” for future BMT, probably doing the transplant sometime in early June. In the meantime, Matthew will continue with weekly lab tests for probable blood transfusions and platelet transfusions. He is also being tested to compare his blood results to Zachary on a genetic level so that Zachary can be the bone marrow donor. Along with his daily meds routine, we are giving Matthew daily injections of G-CSF to stimulate his white cell production and battling asthma, hay fever, and any other more serious infections.
With all this in mind and thinking of the future, we have decided to have Matthew graduate this year. He will graduate and receive his diploma on May 26th. Then on May 30th we will celebrate Matthew’s 20th birthday.
God bless you for your love, support and care.
- Kim, Pat, Matthew, Zachary & Stephanie
