Thursday, April 15 - Evening at home

Today was another whirlwind...just as each day in the past week has been. When we woke up I would have never thought we would be discharged from the hospital today. Joe was very sore and moving very slowly from his great day of walking yesterday. Kevin and I thought to ourselves, how can he make it at home moving like this? As the day progressed, Joe bounced to life and was practically showing off as he strode past his doctor in the hall on the way to the playroom. Since he was doing so well she thought there was no need to keep him and he would continue to recover just as well at home. He enjoyed many great things at the hospital like playing Webkinz whenever he wanted - well into the night and into the wee hours of the morning, watching Star Wars at 4 am, eating Popsicles whenever he asked for one, eating breakfast in bed while watching Sports Center, having friends stop by to visit and the plethora of gifts and cards he got to open; however, he was still really excited to be going home. Since we were heading home today we realized we needed to discuss a little more with him regarding what was going to be happening in the future. As far as he knew until this morning, he had something bad inside his tummy that made it hurt and the doctors had to take it out along with his kidney (stressing the fact that he only needed one kidney to live normally). Kevin explained to him that his body needed to heal from the surgery and incision and that he wouldn't be able to play baseball for the rest of the season. He took it really hard at first which made him cry and of course made his Mama and Daddy cry, too (not a pretty sight and sorry Mr. Harvey that this was when you stopped by...we really were having a good day until then). Joe will get used to this new information and know that he will just have to work harder when he is able to return to playing. His eagerness to get better and push himself to walk and get out of bed today really blew us away. He has been a wonderful patient and still keeps flashing his cute smile. I am sure he will work just as hard when he is allowed to return to playing sports. We are taking one step at a time so we didn't get a chance to fully discuss his radiation and chemotherapy after the emotional discussion about baseball. We will try to tackle that later so as to not overwhelm him, so please say some prayers that Joe will have some understanding and won't be scared about the future. I guess it will give us all a chance to put into practice one of the bible verses we've learned - Joshua 1:9 "Be brave and have courage, do not be afraid, do not be discouraged, for the Lord your God will be with you wherever you go." Joe has been very brave and we are so proud of him. I am sure he will continue to be brave with God's strength. As for Joe's pathology report, we learned that there was a pre-operative rupture of the tumor and some spillage occurred outside the capsule of the kidney. The part about the spillage was new and wasn't what we wanted to hear, but this condition should still be very treatable with highly successful outcomes. The tumor is still classified as Stage 3 favorable histology and the same treatment will be performed. The only difference will be that the radiation treatment will need to include his whole abdomen instead of just his right flank and may add a few more days. We are going to a consultation tomorrow with the oncologist to go over the treatment plan. This is all new to us so we will be learning as we go. The anticipated plan is 7 - 10 days of radiation with 28 weeks of chemotherapy. I think both of these treatments will begin simultaneously as early as next week. There will be side effects but the treatments will be outpatient, quick and should be very tolerable. It is a lot to take in and was a little emotional for us, especially on limited sleep this past week. I think the reality of our life changing and not really knowing what to expect causes some anxiety. The good news is that children who have Wilms tumor with favorable histology have an 85% success rate after treatment with no other occurrences. We pray that Joe will be part of that 85% success rate.

It is great to be home with Joe. We can't thank everyone enough who have prayed for Joe, helped with our kids, provided meals, sent cards and gifts, visited the hospital, called, texted, cleaned our house, ran errands, mowed our yard, checked our mail, thought about us and the many other things that aren't mentioned and are to come. We have had wonderful nurses, doctors and staff at Cook Children's Hospital and are so appreciative for how well they took care of Joe and our family. We have the best friends, neighbors, church and community anyone could have...Thank You!!!!!