Towards the end of July/beginning of Aug. 2003 our 11 year old son, Aaron, was playing football in the yard with the neighborhood boys and his brother. His brother accidentally hit him in the lower back with his head. Typical football in the backyard injury and we moved on. A couple weeks later Aaron was complaining that his back and now hip were really hurting. We thought it was still from the football injury and decided to wait and see if it would go away. About the third week in Aug. we went to the Toledo Zoo and Aaron's leg and back were bothering him so much that we ended up renting a wheelchair for him to get around the zoo. He wasn't feeling all that great, but he has lots of trouble with carsickness and such when we travel so we didn't think too much about it. After our long weekend vacation, he seemed fine again when we got home.
Around the beginning of Sept. his back and leg started bothering him again. Now at this point, my husband and I were convinced this had something to do with the football accident, so I took him to a chiropractor. [I should point out that at this time my husband was trying to get a new company up and running, we hadn't received any income for over one year and we didn't have any insurance. So, we were trying to avoid unnecessary doctor’s bills for something that would clear up on it's own in time--and seemed to be, but kept coming back. :( ] The chiropractor took x-rays, didn't see anything unusual and started doing adjustments. He gave us physical therapy exercises to do at home, but the pain cycles kept getting worse and there was less off time in between. This doctor was great...he tried everything to help Aaron, but nothing was working. He even gave me his personal cell number and told me he would make a house call if necessary. He really took an interest in Aaron and was available virtually 24/7. Aaron always seemed to do a little better after being adjusted, but then within a few days the pain would start, again. After about four weeks, he decided that maybe Aaron should see an orthopedic specialist. I decided to take Aaron to our family doctor (general physician-GP). GP did more x-rays (once again, x-rays looked good) and decided to treat Aaron for a soft tissue injury. He put Aaron on anti-inflammatory medication we were told to try to keep him still for a couple of weeks. Aaron was also starting to wake up periodically in the middle of the night screaming and crying from the pain. As long as my husband would go in there and rub his back and leg, he would settle back down and go to sleep. Since he really liked his dad to come and sleep in his room at times we were a little suspicious that he just was trying to get attention (bad parent guilt syndrome starts on thinking back on these things.) We even tried putting his mattress on the floor because he kept telling us his bed was just too uncomfortable. Sometimes he would be just fine--running and doing normal 6th grade boy sorts of things. But then, POW, a switch would flip and the excruciating pain.
After a couple of weeks of trying what the GP wanted he decided that we needed to see the orthopedic specialist. It was going to take about a week and a half to get into this doctor’s office. We were scheduled to see him on a Tuesday and on the Friday before Aaron kept complaining that he was really warm and he was in such pain again. I took his temp. It was a low-grade fever, but not enough for me to get excited about. I don't even remember if it was 101. I decided to call my doctor’s office (GP) and let them know that I didn’t think that we were going to make it through the weekend without pain medication. It was the doc’s day off, but he called me back and asked me what was going on. I told him about the pain again and as an after thought I told him about the temp. Aaron was just so out of it.
Flash back 15 years: This doctor has been our family doctor since I was a little girl. He was involved in diagnosing my 16-year-old baby brother as having Acute Biphenotypic Leukemia. It was an AML and ALL T-Cell combined. He has always felt that he didn't recognize the signs soon enough with my brother and felt guilty. From diagnosis to death was 15 days.
He instructed me to take Aaron into ER, as it was possible that he had septic hip or something else that might require IV antibiotics. David (my husband) and I were still in "football injury" mode going to the hospital. We got in pretty quick, but after an hour the ER doc wanted to release him without doing anything. He said that pain was subjective, he couldn’t quantify how much pain Aaron "really" was in and that he should just go home, take some Motrin and take it easy. I'm like, "How much easier can this child take it. He is laying around the house most of the time now!!" There was definitely some attitude going on about doing further testing because "you don't have any insurance so we don't know how far you want to go with looking into this. We don't know what to do, MRI's are not done from the ER and the radiologists says no more x-rays--he's had enough in the last couple of months” Confessions of a bad mother time. I then informed the ER doc that I had given this kid a Darvocet at one point and 1/2 of an extra strength Vicodin at another and nothing was helping. Motrin was not going to cut it. At which point he was paged and we didn't see him again for about 2 hours. We didn't know then but found out later that GP wouldn’t allow hospital to release Aaron--he had a gut feeling (We thank God every day for this GP and his gut feeling.). For two hours there were discussions going back and forth as to what was going to be done. Finally, someone declared medical emergency, MRI machine was cleared and Aaron was taken to have an MRI. They also decided to do a CBC. It took an hour and a half for the MRI to be competed Aaron was getting claustrophobic it was awful. David and I stood in there with him for the whole time--I will never forget the sound of that machine. We weren't back in ER 30 min. when the doc came in, sat down, started to speak and got choked up--I knew this was going to be bad. He told us they didn't know for sure what was wrong with Aaron, but that he had lesions in his spine that were displacing the bone marrow. It didn't look good, well, it was really bad, he didn’t know what could be done for him, but we needed to transfer him to DeVos Children’s. He said that they would do everything to keep him comfortable no matter what the outcome. We went from, "You need to take him home and let him rest." to "This is really bad, we don't know what can be done, they will do their best." We drove him late at night to the other hospital. ER docs who said pain was subjective loaded him up with so much Dilauded the he was out of his senses in the back seat. This was on top of a Vicodin they had finally decided he could have. They pushed the injection till his eyes rolled into the back of his head and he fell back onto the gurney. Our baby was so out of it, but he was finally in no more pain. It was a scary ride to the hospital with my husband trying to drive, crying, trying to get a hold of some people on the cell phone but we made. They reran his blood work several times because it was fairly normal. His WBC was slightly elevated 15,000, but everything else was good. We didn’t get an actual diagnosis until Monday late afternoon. The hospital did a full CT scan on Sat. more blood work. They were generally confused at what they were looking at. The pain cycles just kept getting worse and worse. When they started his eyes would roll back and he would scream. They just started pushing IV Morphine really low so that it would take affect sooner.
The GP called me on Sun and we talked for a long time. He just wanted me to know that even though they (DeVos) were not using the term "malignancy" that we were dealing with a malignant cancer. He knew that I had watched and experienced a lot with my brother and he wanted me to know the truth as soon as possible so I could be prepared for what I faced. The hospital wanted to wait until Monday to have their full pathology team in to do the final tests, which included a bone marrow aspiration and biopsy. By the time that we received the diagnosis of High-risk ALL pre-B, we too were thrilled with that diagnosis. His onc’s have only seen one/two other children present the way that Aaron presented. The leukemia was pushing the marrow out of his spine. His pelvis was 80% involved and he was impacted about half we down his femurs, but it hadn't spilled over into his blood. His blood didn't show blasts. Diagnosis date November 10, 2003.
It has since been a very long 27 months. Aaron was a rapid responder, remission at Day 7, but he is also a super absorber. He cannot take full doses of any of his chemo drugs or he goes chemo toxic. We have dealt with lots of side effects. VCR has created all kinds of problems with foot drop, and complete loss of feeling in hands. As long as he is on about 75% dosing though he is able to function. He doesn't tolerate blood transfusions very well. He has osteopenia in his spine and AVN in various places. He had surgery on his knee last fall to try to help with the regenerative process. He is still not walking on his own, but we are hopeful. He goes to aqua therapy twice a week.
Annette, Aaron, almost 14, dx'd on 11/10/03 was on Protocol 1961(C) Now on amended protocol due to complications of treatment. 6MP daily, MTX weekly, VCR every 3 wks, and IT MTX every 12 weeks, no prednisone.