July started out well. On July 4th we took Adam and his grandma to St. Clair. We sat on the waterfront and watched a beautiful fireworks display over the St. Clair river. We had a perfect parking spot right by the water.
On Sunday, July 5th, Adam was still having tremors, possibly a little worse.
On Monday Lori came home for lunch and found that Adam was having trouble walking. He could walk normally for a little bit then his legs would give out. She immediately called me and I rushed home.
We took Adam to the emergency room at St. John Hospital. Pediatric cancer patients are always rushed right in to a private room in the ER. This avoids some of the possibilities of exposure. Adam was examined several times by several doctors. Blood was taken for testing. He was slowly getting worse. He could still walk but only for a few steps. No one knew what was happening or what to do.
Finally, around 10pm, Adam was admitted to the pediatric floor. The next day his oncologist, a neurologist, and several interns examined him throughout the day. Nothing conclusive came from the tests or examinations, and he continued to deteriorate. On Tuesday morning he could stand and support his weight for a few seconds but could not walk. The next day he could no longer support his weight. He also lost bladder and bowel control. We finally gave up trying to get him to the bathroom and put diapers on him.
Sometime in the middle of the week Adam's oncologist told us he believed Adam was having an extremely rare neurotoxic reaction to the intrathecal methotrexate. We asked what could be done. He said there were no options but to wait out the paralysis. Hopefully Adam would turn around at some point and begin to recover.
In my heart I really believed this was what was going to happen. It was just impossible to imagine Adam would not get better. How could a little four-year-old who had been doing so well through every phase of chemotherapy not bounce right back? My hopes were still high.
Around this time the oncologist also told us he had found some research that indicated two things which had helped others suffering from methotrexate neurotoxicity. He was very vague about it all and heavily implied that the treatment was an isolated case, not proven, and most likely without merit. However, if we wanted to try it, it would be very easy to do. The two substances that had worked were found in Coke and Robitussen. He suggested giving Adam Coke and Robitussen would not hurt if we wanted to try it. Nothing else was being done to help Adam so I went out and bought a bottle of Robitussen and Lori started trying to get him to drink Coke. We were not told how much or how often to give this stuff so we just made it up as we went along. The oncologist had seemed so pessimistic about this treatment that we did not really have our hearts in it and did not follow a good schedule of doses. I guess I was hoping we would see a dramatic turn-around, but it wasn't happening. We gave him Coke and Robitussen off and on for several days and then gave up. Weeks later I would realize this may have been the biggest mistake of my life.
At first the doctors had told us they wanted to keep Adam until he began to show recovery. Later in the week they changed that to keeping him until he stabilized. After about five days in the hospital all he could do was move his toes slightly. An MRI was done along with a CAT scan. Nothing was conclusive.
I don't remember where it came from, but Adam received a plastic bat and ball during the week. He loved to have the ball thrown so he could bat it. He could really swing hard at it and was very good at getting hits. The ball would fly all over the hospital room and he thought that was great!
At this point Adam seemed to have stopped deteriorating for several days. Finally, after eight days, he was discharged.
Adam's oncologist had been doing research into the methotrexate neurotoxicity. He told us that there were only six reported cases of paralysis from methotrexate out of the 3000 kids who had been on the treatment protocol Adam was on. Two of them had shown some recovery. Two had remained paralyzed with no recovery. Two had died from advancing paralysis.
Adam had received a wheelchair in the hospital and we brought it home. We didn't realize it at the time but the wheelchair was much too large for Adam. We had been propping pillows around him to give him better positioning. There was a lot we had to learn, and it would be weeks before we found out smaller wheelchairs were available. And more weeks after that to get one.
We were beginning to discover something about the insurance plan Lori had as a St. John employee. It was great for all normal medical coverage. Everything was covered 100% with no paper work. However, when things took a turn for the worse, and got much more complicated, the insurance had some serious deficiencies. Everything was still covered, but it took forever to get things that we had an immediate need for. Like a wheelchair, a stander, foot braces, and more. And we were finding that the specialty items we were getting were the cheapest that St. John could provide. Adam was receiving the minimum that is prescribed in most cases, not what he really requires. We have found out a lot about wheelchairs since July and know that what we have is totally inadequate. We are working on getting him a new chair, even if we have to pay for it ourselves.
We set about doing our best to help Adam at home. He could not sleep alone anymore. Anytime he wanted to turn over in bed one of us had to do it. He was always one to toss and turn all night so his requests to be turned from one side to the other were frequent. It was easiest to be sleeping beside him and just reach over and turn him to his other side.
Aunt Cheryl and Emily extended their stay to help out. What a help they were! Adam loved having Emily visit in the hospital and at home. Cheryl helped with watching Adam so Lori and I could have some breaks. Then she gave us a lot of help the first few days at home. Thank you Cheryl!
It took me days to realize it but I finally noticed Adam's arms were getting weaker.
He could no longer move his toes.
The paralysis was advancing again, this time into his upper body. He could no longer swing the bat at the ball, or even pick it up. By the end of July he was almost a complete quadriplegic. He could no longer lift his arms to feed himself or drink from a cup. He could still move his forearms a little and had a very weak handgrip. He could not lift his elbows off a table. His voice was getting weak. His head could only turn about 45 degrees to either side. He no longer had the strength to cough or sneeze.
We were worried he was so weak he might stop breathing while sleeping. We told the oncologist. He wrote an order for an apnea monitor that would monitor Adam's breathing with electrodes attached to his chest. An alarm would sound if he stopped breathing. Lori is trained in Advanced Cardiac Life Support and could administer CPR if this happened.
Things were getting really scary. Instead of wishing for Adam to get better we were now praying he would not die.
Throughout it all Adam never complained or cried about what was happening. He could no longer play with 95% of his toys. About the only thing he could do was weakly move his Hot Wheels cars around on a table in front of him. He kept one or two cars in his hands almost all the time, wherever he went, seemingly ay.
About this time, near the end of July, Adam's oncologist referred us to a respected physiatrist at Children's Hospital in Detroit. He examined Adam and did an EMG test the same day. This test consists of electrically stimulating one part of an arm or leg and measuring how long it takes for the impulse to reach a measured distance down the limb. It would tell us if the nerves were damaged. A second part of the test involved inserting fine needles, like acupuncture needles, into the legs to "listen" (both audibly and with an oscilloscope) to the firing of the neurons. We really like this doctor. He is patient and easy to talk with, as well as being very knowledgeable. The tests indicated the nerves in Adam's legs were dying but there was still a lot of function left with potential for recovery. The doctor described it as both good news and bad.
Everything was much more difficult and time consuming now. We were back to using diapers. Adam needed to be fed. Baths required two people, one to hold him and the other to bathe him. We were doing a series of stretching exercises with Adam's feet, legs, and arms to maintain muscle tone. Three times a day with the exercises was our goal but it was difficult to always get three sessions in. There were seemingly constant trips to the oncologist, physiatrist, neurologist, and labs for lab work. We also had twice weekly visits at home by a nurse, physical therapist, and occupational therapist. It was impossible for even one of us to keep working full time. There were just not enough hours in the day.
This is the last picture I have of Adam before becoming paralyzed.
Adam's cousin, Emily, is with us.
It was taken during our weekend in Mackinac City at the end of June.
Two weeks later he was fighting for his life as the paralysis
advanced through his body. It is hard to believe we will probably
never see him walk like this again.