My husband and I have three boys, currently 9, 11, and 15. On Nov. 23, 2010 our then 8 yr old, Joshua, was diagnosed with ALL (Acute Lymphoblastic Leukemia). Treatment started off well, but then in Jan 2011 he developed pancreatitis from one of the chemos. He was in the hospital for over a month and was on TPN, liquid nutrition through an IV, for 13 weeks. The first few weeks were tough when he felt hungry but could not take anything by mouth. Treatment again moved along nicely, chemo at home and weekly trips to the doctor for chemo, then once a month. He has had multiple hospital stays for fever and infections. He has also had long hospital stays for chemos that runs for 24 hours through IV. On November 5, 2012 we went for what was supposed to be a routine lumbar puncture with chemo in the spine, but things didn't work out like that. His oncologist immediately noticed his white blood cells were elevated and his platelets were very low. Looking at blood on a slide and under a microscope, there were blasts in the blood, which meant the Leukemia was back. They transferred Joshua by ambulance from Macon to Egleston Children's Hospital in Atlanta. After almost two years of being treated in Macon (25 miles from home), we are now having to drive to Atlanta (120 Miles from home) at least once a week.
Upon arriving at Children's Hospital in Atlanta, we were met by the doctor who went over the plan of action. He was brutally honest, as he told us that Joshua had a 50/50 chance of survival. They were going to give him high doses of chemo to knock the Leukemia down and prepare him for a bone marrow transplant. Joshua spent all of Nov. 2012 and most of Dec 2012 in the hospital. We got to come home 2 days before Christmas. Then back inpatient in Jan-Feb 2013. At that time, the Leukemia was down to the lowest level it had ever been at 0.01% in his marrow. All the tests were scheduled to move forward to transplant, his donor was our youngest son, Christopher. Joshua went in for transplant on April 16, 2013. He endured 6 treatments of full body radiation and 3 doses of chemo. On April 23, 2013 he got his transplant and everything seemed to be going nicely. He had his bumps in the road. From the radiation and chemo combo, he developed mouth sores that were so painful he was on a morphine pump. Then in May, Joshua's counts stalled. His WBC (White Blood Cell count) was not recovering as they thought it should and they scheduled a bone marrow biopsy. That afternoon we got the news we never thought we would hear again. The Leukemia was back. They gave us a few options at that time, but we asked if we could just take him to be with the rest of the family so we could come to grips with all that had just happened.
We returned to clinic the following week and, after discussing treatment options with the doctors, we decided on a treatment plan that would hopefully make the donor cells "warriors". He was given a shot at the clinic and came home with shots that he would receive 3 times a week. By the next clinic appointment, Joshua was feeling so bad that they decided to admit him and run some tests. They were hoping in a way that he had Graft Vs Host Disease but, after a week in the hospital and multiple tests, there was none. That treatment was stopped. He had slept the whole week with what everyone thought was flu-like symptoms. We had also discovered that the Leukemia blasts were up to 80-90% in his marrow and the blasts in the blood were on the rise. The doctor immediately started Joshua on chemo at home along with steroids. By the following Monday his WBC was on the rise and the doctors started to worry. Over the next couple of days his WBC started to come down and appetite was up.
Joshua will be going in for a bone marrow biopsy and LP ( Lumbar puncture ). As long as Joshua's LP is clear, he will start an experimental treatment, possibly as early as Thursday. This is scary because they don't know the side effects or what to expect. The doctor (Oncologist) is hoping that either this will do the job or it will be a bridge for us to go to Philadelphia (where they have been working a special T-cell program that is designed for kids who have ALL and are chemo resistant). Before we can go to Philadelphia, Joshua has to be 6 months out of transplant. At this time, it is almost three months out.
God has been good to Joshua and us. The road has been long and its been a struggle. My husband is self-employed, he does automotive paint repair for dealerships. Business has been slow due the economy. Cancer is an awful disease that doesn't just affect the person diagnosed, it affects the whole family. We have struggled to keep our head above water most days. When he was being treated in Macon, it was 40 minutes from home and easier for my husband to work most days. Now that Joshua is being treated in Atlanta, we are 2 hours away and it is not as easy. At least once a week we have to go to Atlanta for clinic appointments and, if Joshua has to receive blood or platelets, it requires another trip because they have to "wash" the blood and platelets in order to prevent any kind of reaction.
It has become more of a struggle just to survive on a day to day basis. We are losing our house and on the verge of losing the only vehicle we have to get back and forth to appointments. These are material things, we know, but the struggle does impact our family that we are trying to hold together. The most important thing to us is family!
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