There has been much with Danny since my last Journal entry, I am sorry for not writing more.
Last I wrote Danny was in his 3rd Maintenance Cycle of Therapy and having issues with his digestion of solid foods. Danny has seen a new GI Physician at AI duPont, Dr. Schafer who is a Dis-motility specialist. So we just have to support Danny`s neutritian while he is strill receiving Chemotherapy. The Chemotreapeutic Drug Vincristine is a staple of Danny`s Treatment and he must receive an infusion every month. Back in April of 2011 Danny became very sick from Vincristine, a toxic level, and developed Autonomic Neuropathy. This caused a disruption of the signal from the brain to the digestive tract and the involentary muscle movements, or Dis-motility, so Danny could not eat anything or drink much at all. 16 months ago we stopped Vincristine for 6 weeks or 3 doses and reduced the dosage of Vincristine from 100% to 50% since starting again. Now Danny can eat a little throughout the day without any problems, but not very much solid food at one time. Danny will receive a Vincristine infusion once a month for 9 more months when his Treatment will end. This is when Danny will slowly improve with digestion of food so for now I make sure he receives the right amount of neutrients to stay healthy and grow. Danny has now started his 4th Maitenance Cycle and doing well, 2 weeks ago Danny did contract a strain of the Flu, Para Influenza, and we had to stay in the Hosp. for 2 days, this was to make sure that Danny did not have a line infection within his Port. Danny has a Port implanted in his chest which is where all of his infusions are given. Danny is doing good but we postponed this weeks dose of Vincristine to next week just to make sure he is well enough before IV Chemotherapy. Danny still receives oral Chemotherapy every night at home.
Danny was born with a "lazy" left eye or his eye muscle was week, this improved much and his eye was much stronger before we started Treatment. Because of the Chemotherapy Danny has had to receive his eyes will need a corrective proceedure. Chemotherapy affects fine motor skills and muscles, most of which get better once that specific Chemotherapeutic Drug is stopped. So we have been seeing the Opthomology dept and discussing which proceedure will be better for Danny, but again this will have to be done at a good time either will he is still receiving Chemotherapy or after his Treatment ends. We meet with his Doctors next month and a decision will be made when we should do the proceedure.
OK now that all the medical stuff is done, Danny is doing very good. He has been a very happy little guy, running and playing, going to school and just being a joy. All of Danny`s hair is thick and curly and when he laughs he is just a joy to watch. A month ago Danny had the chance to throw out the first pitch at a Major League Baseball Game, The Philadelphia Phillies. We were very blessed because we had the chance to share this experience with everyone we love. My place of employment, which I have not yet returned too, invited everyone at AI duPont Hosp. for Children. Yes I said everyone who cared for Danny, his Doctors, Nurses, Aids, Danny`s Therapists, Child Life and any else at duPont who wanted to go!!!!! It was such a beautiful day and Danny was the center of attention. To walk with my son out to the pitchers mound and have him throw out the first pich, I could never find the right words to explain how I felt, I still cry and know we are truly blessed. I call everyone our family so that day we had almost 100 family members with us (you can see photos in his photo album). I even wanted to share this experience with another Child so I asked Joe McDonough from The B+ Foundation to come along and bring a B+ Hero and he brought Molly and her father along with Ali, Molly and her dad got to go on the field with us. So Thank You John Dougherty and Brian Burrows from Local Union 98, IBEW, you have given us a life time memory and a wonderful day.
I just want everyone to know that dispite everything Danny is doing quite well and being a 3, almost 4, year old little boy. Hes is my insperation.
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