Warning, this will make you cry

Well, how to say this gently, Ammon has a new roadblock in his life. He was diagnosed last weekend with leukemia. He has B-Cell Acute Lymphocytic leukemia(ALL). If you want to know all the stats and info, you can look it up, the American Cancer Society has great info. It is just in his bone marrow, we caught early. It is highly treatable, so we are pretty positive about fighting it off. Down syndrome children are at a higher risk for it and we knew this when he was born, but we didn't expect it to hit him so soon, this month. Here's the condensed story. He has been crying for the last month and a half, for reasons we were not sure of. A few weeks after we started the Ketogenic diet, see previous post, he started crying more so we just thought his stomach was upset. We modified and experimented, trying to see if something he was taking was bothering his stomach. The crying got worse, so I started taking him to our different specialists. We started reflux medication, took xrays, did blood tests, ruled out a lot of things, but still didn't know what to do. Well a week ago Wednesday he woke up crying in serious pain and a fever-he had never had a fever the whole month we were trying to figure him out. We gave him Tylenol, but that didn't cut it. He was starting to breath funny and his stomach seemed to be almost contracting like hiccups. I took him to Instacare and they ruled out appendicitis, but we would have to wait for normal hours to get any imaging done. I didn't want to bother with on-call doctors so I drove him down to Primary Children's ER. They got us right in, he was crying pretty hard. They checked him over and started blood test. After about 3-4hrs the ER docter came in and said his white blood cells and platlets were extremely low suggesting an infection or possibly Leukemia. Ammon's oxygen sats were low, so they started him on oxygen and said we would have to stay over night. I knew it must be serious if they just came right out and said cancer, but I was holding on to the fact that I knew his stomach hurt. Couldn't he just have a big tumor in his stomach or something in his intestines. Well the night was rough and the news came around lunch that it was Leukemia. I just felt a wave of relief with the sadness. I had been praying for weeks to know what was wrong with him and here was the answer. Kids usually complain about bone aches or feeling achy like when you have the flu, so Ammon was probably feeling achy all over and had no way of telling us, except arching and crying. Here I was trying to get him used to going to school and going through the motions of daily life, doing normal things and avoiding the ones where being too noisy wouldn't work, but going to the store for a few-several minutes, or going for walks because I was tired of him crying in the house. The whole time he was in serious pain or very uncomfortable. Brian and I had been switching off going to church because after 10 minutes we would be walking the halls with him, trying to calm him down. Actually the weekend before all this, he was calm enough to stay through the whole meeting, it was also the Primary Program. I was doing the music and wanted him to be part of it, even if he was not on the stand. His very kind Primary teacher held him through class until he fell asleep. That Wednesday-the day before the night and day we took him in. I was sitting outside in our backyard with two of my neighbor friends, watching all the kids play, enjoying the perfect weather, soaking in the fall sun with Ammon on my lap, thinking life is good.

Well life is still good. We've already had so many blessings and friends and neighbors wanting to help out. It's ironic that the weekend before we participated in a 5K benefit for our neighbor who is in remission from her cancer. We came home from the hospital last Tuesday. Brought him back to the hospital on Friday to do his third dose of chemo. His sats were good, so we took him off the oxygen and today he finally didn't cry all day. He has to be on steroids to help fight the effects of chemo, and that was making him cry like crazy and not being able to hold still. Ammon is about forty pounds now, so when you hold him in your lap and he arches his back because he is crying, it can wear you out. So the plan is to keep up the Chemo every Friday and then it goes to every ten days for the next 6 months, then tapers to once a month for a year and we will be done in 3 years. We will only have to be hospitalized if he gets sick with a fever, which they said everyone does, so that will be our challenge, to keep him healthy. We already are very careful of where we take him, but to totally eliminate going out, will be hard.

Just like everything else in his life, we are so grateful for all the love and prayers and support. It will be okay, he his a fighter with a strong spirit. A friend pointed out that Ammon in Egyptian means Hidden and Everett we already knew means strength...Hidden Strength. We are so blessed to have him in our family!