Ok, ok, ok, I hear you! I realize it’s been a week and everyone wants to know how things are going at home. My apologies for the lack of updates, I have had a hard time finding the time! No excuses, I know.
The good news is that Eli is doing well. He is VERY happy to be home. Also, he didn’t feel many bad side effects from the second round of chemo, so we were really thankful for that. As most of you gathered from the photos I uploaded, we did indeed get to do some camping in the tent. We didn’t get as far as actually sleeping in it all night, but we did spend a lot of time sitting and playing in it. We even left it up until today so we could spend some time each day in the tent. Jeremy and Melissa brought over some firewood, graham crackers, chocolate bars, and marshmallows so we could have a bonafide camp out. It was a blast! You can see some highlights at http://photos.hornit.net and check out the “Back Home” album. Be sure to check out the huge welcome home sign the Packards hung on our garage door Friday! He still doesn’t appreciate medicine (who does), but otherwise he’s very playful and even ornery again.
So far, we haven’t had any fevers or any reason to go to the hospital, so we are thankful for that. We are also thankful that our very competent McFarland Pediatric team is continuing to monitor and check Eli’s blood counts while we’re home in Ames. If we do end up with a fever sometime, we should be able to go to Mary Greeley in Ames and get things under control without having to drive all the way to Iowa City or Des Moines. Eli gets his blood drawn from his “pipes” twice a week to analyze his Electrolytes and blood count. As of today, he is officially neutropenic, which means little visiting and only with masks. It also means we have to give him a shot every day to help boost his stem cell count. As you can imagine, he is NOT a fan. He thought the pipes meant no more pokes, but this is an unfortunate exception to that rule. 🙁
Eli’s Uncle Adam (who he has called “Uncle Dodo” since he could first talk) wrote Eli a really cool song and recorded for him. I put some pictures to it for a slideshow and uploaded it to my YouTube site, which some of you might have stumbled upon already. If not, you can check it out at http://www.youtube.com/Ska4Him and play the one titled “Letter to Eli”. It’s a really great encouraging song and Eli always loves hearing songs by his Uncle. It’s his number one requested CD when we’re in the car, although it has to compete with the Tunnel song sometimes!
We do have a specific prayer request for you. We are probably going to be making a trip to New York sometime in the next month or two. Memorial Sloan-Kettering Cancer Center is a center that has a team dedicated to Neuroblastoma – http://www.mskcc.org/mskcc/html/2868.cfm. Of the 600 cases of Neuroblastoma diagnosed each year, over 80 of those kids come to Sloan. They have a surgeon that does many Neuroblastoma tumor surgeries each and every week, as opposed to maybe a few each year. We feel it is a pretty clear and easy decision to take Eli to New York when it comes time to have surgery to remove whatever is left of the tumor after chemo treatments. However, Sloan also has an antibody treatment program that they do instead of stem cell transplant. It is considered to be slightly more experimental and they are the only ones that do it, but it’s also something they have been working with for many years. You can learn more about it here if you’re interested: http://www.mskcc.org/mskcc/html/3215.cfm. So we are prayerfully considering whether we want to do the 3F8 antibody treatment instead of the stem cell transplant. It would really help us if you would pray for wisdom and discernment on this issue of how much to have done in Iowa City versus how much to have done in New York.
Thank you all so much for the prayers and for the great cards and gifts. We’ve enjoyed receiving them and love hearing from you guys.