Jenny’s Journal January 12 2002
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Our Hearts are filled with HOPE!
This past few months have been an amazing time for us. We are seeing
Jenny transform right in front of our eyes. Dr. Davies equates it to a
flower that slowly blooms. Jenny has really NEVER BEEN BETTER!
Jenny moves about the house entirely on her own. I have finally gotten
used to having Jenny suddenly show up at my side. She has helped with the
dishes, setting the table, making coffee, making her bed and tidying her
room. Jenny takes care of her own showers, she dresses herself, she
carries a purse and wallet and pays for her own purchases now. She is
able to calculate the change that is due her from her purchases (for the
last year prior to the transplant Jenny was unable to do even the simplest
mathematical calculations). We also have noticed that she speaks more
fluently than ever before, her thoughts are more mature and her
observations include the rest of the world, not just the goings on in our
own home. To give you an example of the transformation: last Christmas
Jenny had asked for crayons, markers and coloring books. This year she
asked for a digital camera. And she bought herself a cell phone! Also,
Jenny’s sense of humor has just shocked us recently, she is a tease and
full of fun most of the time. She always seems to have a reason to smile
and laugh. We are so happy now that our house is filled with laughter and
joy again. These many changes have filled us with hope for Jenny’s
future; hope that her condition will continue to improve — that the
disease alpha-mannosidosis has not only been stopped, but that the ill
effects of the disease will be reversed somewhat as time goes by.
Jenny’s count are still stable. Her platelets hover around 110,000 (no
platelet transfusions since October 2000), her white cells are at 4600 and
her hemoglobin is at 11.6 (no blood transfusions since July 2002). She
doesn’t take any medications. She had shingles in August and reacted very
well to the acyclovir. That seems to be the last chapter in many bone
marrow transplant patients’ treatment. After more than two and a half
years, we consider Jenny’s transplant to be complete. So now we will get
on with our lives.
As always, thank you for your continued encouragement and support. Keep
us in your thoughts and prayers and we will do the same for you.
Jenny’s team:
Dr. Stella Davies, Tim Krepsky (BMT Coordinator) , Jenny & Todd Bobeda (donor)
Love,
The Smiths
Steve, Dianne, Jenny and Jason
