Joey update: Dear friends & family, Today Joey had an MRI, labs, a pulmonary lung function test, visited his neurologist & his BMT doctor and I received the fabulous news that everything looks good! Really good to quote both doctors who could not hide their delight and astonishment. Dr. Harris, his BMT doctor (Bone Marrow Transplant) said “We don’t need to see him for six months.” I had to ask him to repeat that. I thought back to the long blocks of time Joey had to stay in the hospital (47 straight days one time) and then when he was finally released, the daily trips to Ann Arbor. Six months will be his three year anniversary from the transplant that saved his life. Six years ago this summer was his first brain tumor. Almost half of his life has been a painful struggle. I have been asked if I ever say, why my child? When you spend as much time in hospitals as we have, you know your child has not been singled out. However, that insight did little to ease the excruciating heartbreak of seeing our child suffer, watching him miss out on so much or the lasting affects this has had on our entire family. I can’t thank all of you enough for your help in making our journey easier. As I sat there today, receiving this long awaited news, I had a lump in my throat and could hardly speak. I know it is a miracle that he is here with us, that he is doing so well. I remembered another time, sitting in another hospital with his beautiful nurse Norene holding my hand and his doctor giving us the news it was bad…very bad. I am so very grateful that you have continued to keep Joey in your prayers and thoughts. His headaches are not as bad, but still he gets them almost every day along with leg pain. It is very rare that he has a day without pain. I am praying that he will start to grow on his own, without the use of growth hormones. (Which can have complications) He has cataracts from all the steroids which will require surgery and at this point, he is still considered steroid dependent. There are all kinds of horrors, side effects and conditions that he has that are listed on his chart that they print out for me each visit. All which I refuse to look at. Only God knows his outcome which is true for all of us. He will be taking four classes this fall and wants to join the chess club. This is quite a jump from only taking two classes last year so I know he will have some challenges but we will just take it one day at a time. Much love, Lisa
Posted on: Wed, 20 Aug 2014 00:10:27 +0000
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