Rough day

Eli had a rough day yesterday. They had to access his port to draw blood and we didn’t have any numbing cream, so it was sore. Then they put him to sleep and gave him a temp line, which is actually three tubes coming out of his chest, bringing the total to four tubes. Then they did an xray and made him stand for it. Then they took him to the stem cell harvest room where he had to sit there for 3 hours. The poor guy didn’t get to eat until noon because he wasn’t allowed thanks to anethesia. He tried to play last night, but he just tired out too quickly and his little chest was sore from surgery, so he didn’t last long with the other little kids. He was out by 8:30pm. They ended up getting 1.1 million stem cells yesterday out of the 8 million they are wanting to get.

Today was a better day, but he still felt a little sick. We’re not sure why, but we’re going to bring it up tomorrow and see if they have any ideas. They ended up getting 1.7 million cells today, so everyone is pretty happy with how things are going so far. We’re definitely going to be collecting again tomorrow (Wednesday) and likely Thursday as well. They are closed Friday for the fourth, so hopefully we can get to our 8 million cells mark by Thursday.

We did get some scan result clarifications. CT looked good once again. Also, the bone marrow biopsies were clean again! However, they only did 2 sites instead of 4 like I asked, so I was a little disappointed in Dr. Kushner for that because he is the one that did the bone marrows and ignored my request to do 4 sites. We won’t know if the 4 aspirates were clean (yes, he did 4 aspirates, but only 2 biopsies) until tomorrow or Thursday as those results aren’t in yet. They were clean last time for the first time ever, so we’re hoping they are still clean!

The MIBG still showed a small spot in his abdomen, but the MIBG techs officially called it surgery clips pickup. An MIBG scan picks up neuroblastoma cells. However, it will pick up neuroblastoma cells whether they are living or dead scar tissue. So Lacey and I asked for a PET scan to be done, which picks up fast growing and alive cells (although it’s not neuroblastoma specific). SO, if you do a PET scan and compare it to an MIBG scan, you get a good idea of whether the cells on the MIBG are alive or just scar tissue. They met today as a team and our nurse practitioner made the pitch and they agreed to do a PET scan to compare to the MIBG. We have never done this scan before, but we are told it’s much like MIBG, so hopefully Eli will be able to do that without anesthesia just like MIBG.

Sorry that everything is short and to the point, but I wanted to get this update out before crashing for the night. Thanks for checking in!