Jon's journey has been a crazy one. He started off with bruises down his legs so I made him a appointment at his doctor office. He ran some test. When he did that he saw that his counts were very low. So they called me and had me turn the car around and take him to the hospital ( Blank Children Hospital). We spend a week there running all kinds of test. They took like 30 tubes of blood from in just one day. It took about a month to find out that he had the rare disease. They tried to treat it with medication and then he had lots of blood and platelet transfusion. We were going to the doctors office two times a week. Mom is the main bread winner of the house but I also do all the medical appointments so I used all my sick and vacation hours for appointments.
Then the team decided after about two months that he would need a bone marrow transplant. I had no idea what that really meant. But as a parent you do what you have to do to save them so we went forward and meet a doctor here in Minneapolis about a bone marrow transplant. We keep going to our blank doctors.
At the beginning of June Jon and I packed up my car and headed to Minneapolis. We drove about 4 and half hours to start the journey. We had a week of work up to get this done. He also had to have a line put in. Then he had 14 day of Chemo therapy. Then a few days of rest and then transplant. He did well tell about two days after transplant and he got very sick. So sick I thought we might loss him. Every parents worst night mare. We lost our donor to and had to get my self ready to donate 3 days before transplant. So Jon was very sick for a bout 2 week. Just laying him bed with lots of medicine and tests. Then he started getting better.
Then he got to leave the hospital for about a week and he started running a fever so back to the hospital. Then spend another week there but could not find anything so send him out again. Only to come back a week later. Then they did more testing and found out he had graft vs host. He had the worst one 4 in the gut and skin. He had tons of medicine and creams. He had four more weeks in the hospital.
He is out now and doing better but still on lots of medicine and still needs lots of care. I spend my day taking care of him and trying to keep things up at the Ronald Mc Donald house. We still go for appointments and then pt,ot and speech appointments.
I have 3 other kiddos at home still that I miss very much. I got to see them a bit this summer but not much with him in and he out of hospital. I FaceTime them but not enough.
My son has been through so much medically and his siblings miss us. His stuff is so rare not a lot of places to go for help but I still have house payment ,bills, car payments to pay. Please pray for us and help if you can. Thanks