Fall is near by and it is been a cray summer for our family. August 24,2011, 1 year to the day after Wylie was diagnosed with his 2 tumor areas, he has shown new tumor growth of his primary brainstem tumor. So now were talking CHEMO.
Wylie returned to school part time in August and is now home bound due to his 2 most recent surgeries. There was an attempt to surgically correct his eye position last Tuesday. The steroids made it very difficult for the surgeon. Wylie's double vision is currently worse and as his vision improves this will be worse we are informed. The operation was a success but the patient can't see now! Wylie can see for the most part but 2 of everything. Makes seeing at distance and reading a little challenging. But they say two ice creams are better than one! Wylie began home bound learning today. He is tied out. He also had a port installed in his chest to being a "non-chemo" chemo next week to maybe take down swelling of the tumors and take his off decadron(steroids). He did well with this surgery also, but failed to absorb O2 well enough to come home from day surgery and spent 2 more days in the hospital. He went into surgery with fluid, collapsed lung areas from the steroids and inactivity, therefore the surgery caused some complications with weaning off oxygen. We what did we do to help...We pushed the edge and went to see his favorite baseball team the Atlanta Braves! Wylie was given box tickets a few months ago so we had to go. We didn't get the memo for the time change and showed up just in time for the final pitch and saw Styx in concert. We were given rain check tickets for Sunday's game and Wylie was able to see the game with his buddies Mason,Mariano,and brother Seth. We had fun. But all good things have a price. Wylie has difficulty keeping his balance and falls nearly every day. Getting in and out of bed and car is a challenge. Finding it more difficult with time. Very weak on his left and unable to use his right hand. His legs can barley life his body up to the car seat. He still can fall out well though! He can't climb steps very well and this has been my main concern with returning to school. One week ago he lost feeling in his right arm. His voice is weak and swolling a bigger challenge in the last month. We were able to attend a lighthouse retreat for families of children with cancer. We had great volunteer family partners nurture us with God's love. We met lifelong friends and found comfort in there equally challenging lives. There was just an understanding there like no other. God is with us through all of this. He loves us and will be no matter what. Wylie felt for the first time these people real get it! What he can't do and what he can. He often tells me I don't understand because I push him and expect more out of him than ever. Well, I am a mom! I will also expect that of him. no matter how weak I will always encourage and push for him to want more Wylie I am so proud of you! Wylie will be starting chemotherapy beginning next week along with the anti-swelling chemo drug. We will keep you posted. Thanks for your support.
