|Kj at her first day of school. She REALLY didn't want a pic.|
|The water level is so low they could touch the buoys!|
|I put this pic in because I wanted to show you how skinny Kj got. Her swimsuit really hangs off of her now. :(|
|And who doesn't love cute babies getting messy on a beach?|
I'm kicking myself for not asking for a test at our Friday appointment because we were planning a fun little family getaway to Mt. Hood for Labor Day weekend. Because Kj was still sick, HH offered for me to go by myself. I was happy to get away and sleep for 10 hours one night (wahoo!), but I missed my family a lot and wished they could have come with me. But maybe I needed the R&R for what was coming next.
You see this photo? It was taken on Tuesday or Wednesday after Labor Day. His skin is clear and normal.
|His first attempt at a smile for the camera. I was tickled!|
In the morning, there were bruises all over his body, mostly dark, and the red pinpricks were everywhere too. I came home from my workout to a very worried husband, who had done a bit of research and was coming to scary conclusions. We called his sister over and took Seth to the emergency room after speaking with the nurse on-call.
It was an exhausting ride from there.
They drew some blood at the hospital and found that his platelet count was really low, meaning his blood can't clot, hence the bruises and red pinpricks, known in the medical world as petechiae (pronounced pe-tee-kee-a). They recommended us going to Portland to pursue further treatment, as Portland could offer the probable treatment our little guy needed.
And we waited.
We waited to see the doctor in the ER. To get the paperwork transferred. And waited.
We drove up to Portland and arrived at about 5:30, I think. It's all a little hazy. We consulted with the doctor, and he told us it's probable that little S has Immune thrombocytopenic purpura (used to be known as Idiopathic thrombocytopenic purpura). Most kids, if they get it, have it only once, and the body can heal itself on its own. I was all for letting his body heal on its own, but there's a concern, especially for little ones, that they'll have a big fall or bonk and start bleeding internally. So we opted for a treatment called IVIP (intravenous immunoglobulin) to try to increase his platelets to a safer level. That was hard. The treatment started at 10 pm, S was exhausted, but very uncomfortable so wasn't sleeping very well. In fact, there was a lot of screaming going on. I did my best to calm him, but in the end, they gave him some Ativan so we could all get some sleep. He had a good chunk of sleep from midnight to six, but was awake from 6-10 am. We were so tired! There is so much waiting to be done in hospitals.
But we were also so grateful that S only has ITP. You see, we stayed in the cancer ward at a children's hospital. It was heartbreaking to see children of all ages battling cancer, their bodies bent over, their gait shuffling and unsure because of the effects of chemo. I felt guilty when sharing with other parents that our baby didn't have cancer. Of course they were so happy for us. One mother's son was born with his cancer; it was all they knew of child raising, and she counted that as a blessing. One 8-year old girl reminded me so much of Kj. I overheard her asking her dad and a nurse about the treatments she'd be receiving the next day, and crying in anticipation of it. I saw a friend give a mother of a child with cancer a small gift - I have no idea what it was - and the mother breaking down in tears. I saw two young men playing Monopoly. One of the boys didn't have cancer but a problem with his bone marrow. He had been in the hospital almost constantly for 100 days. 100 days!!!! Can you even conceive that? I can't. But thankfully a transplant was on the way for him.
And then I think of an acquaintance whose daughter was born with heart problems and endured one surgery if not more in the first year of her life. How did that mother of three with a husband in school handle it? One exhausting day at a time, I suppose. One day and thousands of prayers at a time. I know she had a lot of help from family and friends just like we did. I didn't worry about my girls at all while we were gone. I missed them terribly, but I didn't worry. With my sister, sister-in-law, and many friends in our ward, I knew my girls would be loved and cared for while we were away.
I have had very few bumps in my road of life. These children with cancer and their families climb multiple mountains yearly, yet they persevere. What an example of faith and love!
And nurses are generally speaking amazing people, I think. They were helpful, kind, empathetic, knowledgeable, and trustworthy. They cared, and it showed plainly in their actions.
S has a blood draw on Wednesday to see how his numbers are. Pray for the best!