Wednesday, November 16, 2011

Happy and Moving Forward

It is often hard to know where to start when I've been composing blogs in my head, but never took the time to write them. So I'll just start by spewing out a recap of events. I'd post pictures, but I'd have to have my camera with me and I don't. More on why later in the post.

William's birthday was great (see last post). He seemed a bit pale, but his lips remained pink enough (in my judgement) to refrain from calling the doctor. He had a clinic visit the next day anyway. As expected, his cbc revealed a hemoglobin level of 8.3 and platelets at 24. The magic transfusion numbers are 8.0 and 20, but the doctor sent us up for blood and platelets anyway to eliminate the need to come back in a day or so. And it was a great boost for his upcoming party with friends on Friday. Thank you. Also, because we are well seasoned in the life and style of neutropenic cycles, the doctor let us cancel our next two scheduled visits, trusting I would call for anything on the list of "when to call the doctor." Awesome. Sometimes there are perks to being a repeat cancer offender.

The birthday party was fantastic. It was fairly low key as William doesn't have the stamina to run around or do much in the way of sustained physical activity, but it was perfect. He hosted a movie night with some of his friends to watch "Star Wars: The Phantom Menace." We borrowed a projector, set up couches like stadium seating by putting one sofa on risers, ordered pizza, popped popcorn and had plenty of Skittles, Starbursts, and M&Ms on hand. The boys laughed and probably had more fun making wall shadows with the projector. I loved watching William laugh and be silly with so many friends. He just felt like a normal 10 year old kid for the night. That night was one of our small miracles.

A couple months ago (before the cancer recurrence) I was asked if our family would sing in church. I accepted. We've never done this or advertised any singing ability. Ryan sings beautifully. I will sing in a choir while preferably standing next to a strong singer. The boys enjoy singing with the radio and in primary (church class). But I've always wanted my boys to be singers. I heard 4 or 5 brothers sing in church when my boys were very little. The brothers were in their late teens to early twenties. As I listened to them I thought, "That's what I can do with 5 boys." A few weeks ago, while feeling quite overwhelmed, I canceled our singing debut. But my musically gifted mother, with a special talent for children's choir's, found a beautiful and simple piece of music and took it upon herself to teach the boys the song while she was visiting during Halloween. At the last minute, with a bit of rearranging and program approval, we were back on the program. Saturday morning we met at the church to rehearse with our accompanist for the first and only time. It was near disastrous. The boys kept fighting and whining and just plain not fun to deal with. We left praying for a small miracle that it would all work out. I just wanted a sweet memory of our family singing together. Is that really too much to ask? They sang beautifully. Soren stood in front and was the typical flirt he is and sang out loud and clear. No one punched, kicked, or shoved one another. No on touched, licked, or breathed heavily into the mic. It was perfect. And if it wasn't perfect, don't tell me because that's how I'm going to remember it.

The next day, Monday, he started to look more pale. By that evening, I decided I'd call the doctor. I drew labs and dropped them off at the hospital. The doctor called me a couple hours later to confirm that his hemoglobin was indeed low: 7.9. His body should have be on the upswing since the next round of chemo was scheduled for Thursday, so we decided to wait and see if his body would start making more red blood cells on its own. Every transfusion carries its own set of risks. Besides, he was acting quite pleasant and cheerful, not overly fatigued. Early Tuesday morning we headed to the hospital for a CT scan and bone scan to assess the current state of his disease and the effectiveness of his completed chemo cycles. While sitting in the hallway, waiting to drink the contrast dye for the CT and get the contrast injection for the bone scan, he starting screaming in pain (in his tumor side) and became somewhat inconsolable. At one point I was cradling him in my arms and singing his favorite lullaby. During the wait time before the scan, we walked over to the clinic and saw the doctor. They gave him some Ativan. Love that stuff. Then his cbc revealed a hemoglobin of 7.2. He wasn't recovering on his own. The doctor guessed he may still be bleeding in his tumor, but the scans would reveal more of what was going on. So we added transfusion to our list of things to do at the hospital. We had hoped to be home by noon that day, but home by 5pm works too. It's home just the same.

This morning he still complained of pain in his side. I watched him throughout the morning and he seemed to fatigue quickly. Granted, doing math homework would fatigue most of us. After talking to the clinic a few times, I brought him back to the clinic to check him out. He was so tired he didn't even want to get out of his wheelchair. His labs looked fine, but heart rate was high. It was decided to admit him for pain control. William said he wanted to be admitted. Wow. That says something about how he was feeling. Then he spiked a fever so we added antibiotics to the reasons to admit. He was scheduled to be admitted on Thursday for chemo anyway. What's one extra night? Hopefully it's just one. The jury is still out as to whether he'll be able to start chemo tomorrow night or be delayed a few days. We only have one or two days to mess with or William's stay will extend over Thanksgiving.

The scans revealed the tumors are responding to treatment. The sense I got from the doctor was the response was acceptable, not amazing or miraculous, but acceptable and good enough. We will continue to move forward. The main tumor in his abdomen is actually larger in size. However, the interior of the tumor appears to be neurcrotic, dead or dying cells. The enlarged size is due to swelling and inflammation brought on by the active neucrosis. This is causing William's pain. Evidently, also has a smaller tumor in his lower abdomen. We missed this fact in reading the previous scan results and it hasn't been discussed because it's fairly insignificant to the the rest of the activity going on inside him. The smaller tumor has shrunk. The ankle tumor remains unchanged and the activity in his chest, likely in the lymph nodes, appears to have decreased. So we're happy and moving forward.


  1. You weren't mistaken it. The performance was perfect and very sweet. It had looked like you guys had practiced for weeks. You have a very talented family.

  2. Hi William, I'm glad that you had a happy birthday with your friends. ~Rachel

  3. I'm glad they sang perfectly! You're a lucky mom. I hope you make it home for Thanksgiving.

  4. i wish i could have heard them sing! i was in the temple last night with my parent and - by chance - aunt kathy and uncle doug. i was praying for william and you all...
    love you! hang in there! oxoxo