Not much has changed since my last update except for the beginning development of some sort of plan. I think. I had a discussion with Dr. Kramer about the next steps for Eli. She agreed he couldn’t go on Temodar with his low counts (they continue to be low, but we did stop the nightly GCSF because at one point he was above an ANC of 1, but then it immediately dropped after we stopped). She also agreed that it would be good to do his last round of Accutane (the 8H9 protocol called for 6 rounds). Eli finished his last round of Accutane this week, so we are hopeful that that was Eli’s last round of Accutane EVER. Who knows, but for now, Accutane isn’t on our horizon anymore. Over the last few rounds, Eli had been handling Accutane really well. Some dry skin, but not nearly as bad as it used to be, and very few emotional breakdowns. With summer here and many trips to the pool planned, we are glad he is off of it because it makes him extremely sensitive to the sun.
Then it came time to talk about 3F8. Her first question to me was, “Why would you want to put him through more pain and more 3F8?” My simple response was, “Because it works.” Lacey and I understand that we can’t put Eli through 3F8 forever. At some point we need to stop, but it is beyond nervewracking because if you aren’t treating neuroblastoma, you’re essentially just waiting to see if it comes back. And the statistics say it’s more likely to come back than not. That’s the harsh reality we live in. We also know that there are very big treatment options coming and we’d love to keep him cancer free until he qualifies for those. In particular, they have developed a ‘neuroblastoma vaccine’ that kids at MSKCC are currently getting. However, to qualify for the vaccine, you have to be NED (Eli is) and have had one relapse. Eli has never had a relapse (the brain spot wasn’t a relapse, it was cancer showing up in a location that it had never been before), so he doesn’t qualify for the vaccine. However, Dr. Kushner said at the big Band of Parents meeting that he hoped to start allowing the vaccine for kids who went NED, but who had never relapsed. If we could do 3F8 until that happens, then we could do the vaccine and Eli would have a better chance of never relapsing again. We hope. We pray. Only God knows, but it is our charge as parents to try to make the best decisions for Eli based on the information we have, and then pray that we have made the right decisions. That is something I have certainly learned over the past several years. People would tell us to just pray and that God would make the answer clear as to what we should decide. That didn’t happen. It was an extremely difficult decision to leave Iowa City (for a transplant) and move out to Manhattan (for 3F8). What did happen, is that God gave us the decision to make, and then showed us much later how HE used that decision to help Eli become NED and have an amazing quality of life over the past 3 years (the 3 year anniversary of his diagnosis is this month if you can believe that).
So anyway, Dr. Kramer agreed to discuss it with ‘the team’ at their Tuesday night meeting. I’m not sure if even got to that point, because Tuesday afternoon before the meeting had even started, I had a voicemail from Dr. Kramer’s assistant asking if we could be there for 3F8 on June 28th! Obviously they agreed to let us go back on 3F8. We aren’t sure ‘for how long’, but we will take every round we can get. I’m sure they’ll talk to us about what kind of protocol they are putting him on once we get there. In 2008, 3F8 took Eli from numerous cancer spots all over his body, to being NED after just 2 rounds. It has kept him clean ever since (not including the new brain spot in 2009, but 3F8 doesn’t treat the brain). He goes to being immune to 3F8 (called HAMA) in waves, naturally without having to use a drug to bring him back down to being HAMA negative, which means his body is responsive to it. We just want to keep this good thing going until he qualifies for the vaccine. Relapses are devastating, we know that all too well from all of the friends we have made along this journey.
Ok, so that is the news on the medical front. Eli finished up Developmental Kindergarten this year and is now going to Ankeny Christian Academy every day for summer camp. Not much learning, just pure fun, and he loves it. They do have a ‘theme’ where they talk about the human body in class. I’m not sure, but I’m guessing Eli throws in his two cents every day. 🙂 I know that during school when they were talking about bone marrow, Eli appointed himself a guest lecturer. 🙂 His teacher asked him to wear his tshirt from the Bodies Exhibit, which is a skeleton, because it fits their theme next week. On Mondays they go to a park, on Tuesdays they go to a aquatic center for swimming, on Wednesdays they have a movie day, on Thursdays they go on a field trip (last week was the science center), and on Fridays they go back to the aquatic center. I started to think that perhaps I would like to sign myself up for summer camp!
Next year, Eli will start regular Kindergarten at ACA. He will obviously be an older Kindergartener at 6 years old and turning 7 halfway through the year, but there will be other kids his age from his DK class with him as well. Letting Eli go at a slower pace this year to allow for him to be gone so often for treatments and blood transfusions has been a great thing. Being in the hospital while other kids were learning their letters in preschool definitely put him at a disadvantage, so he should go into Kindergarten next year very confidently. His DK teacher this last year, Mrs. Namanny, was absolutely amazing and Eli loved her. She was so great about letting us know if someone was sick so we could keep Eli ‘away’ (and the other parents were amazing to keep their kids home sometimes for Eli’s sake). Eli likes both of the Kindergarten teachers next year, so he will be happy with whomever he gets for a teacher.
In other news, a friend of ours (Kris) had a friend (Susan) that found out about Eli and wanted to do something special for him/us. She liked the Eli’s Army shirts that Kris had made for the CureSearch Walk at the zoo a while back, so she decided to sell them as a fundraiser for Eli. Her family owns an amazing children’s toy/book store in downtown Ames called The Pumpkin Patch. She has two big windows, one of which was full of Ugly Dolls (we know and love the Ugly Dolls from being in NYC, right Barbara?) and the other window was full of Army gear (tanks, pup tent, and of course Eli’s Army tshirts). Susan’s 7 year old son, Henry, drew an Eli’s Army poster for the display. We went there on a Saturday morning and they were selling lemonade, cookies and tshirts/bracelets outside of The Pumpkin Patch. Eli and Henry immediately bonded and then played in the toy store for hours. They sold lots of shirts (if you ordered an adult shirt and they were out, they reordered this week, so you will get it soon) and it was a big success. Thanks to Susan for everything. The next day (Sunday), Eli went to Henry’s birthday party and had a blast. I really don’t think I have ever seen Eli immediately connect to someone as quickly as Henry, and most of that is a testament to how easy Henry is to get along with. He is a really great kid with a really big heart.
Here’s a picture of Henry and Eli wearing their “Eli’s Army” shirts:
 |
| From |
If you are interested in ordering an Eli’s Army tshirt, you can do so at his new online shop. http://shop.elihorn.com I’ll tell you right now that if you order more than one type of item, the shipping is going to be too much, so I will have to issue you a partial refund for the shipping. It uses PayPal as a checkout. If you order multiple Adult shirts, it will be right, but if you order a mixture of Adult and Youth shirts, the shipping will be too much and I’ll need to do a PayPal refund. If we are out of shirts, it might take a little while for Kris to place another order and have new shirts made, but you should get it within a week or two. Adult shirts are $15 and kid shirts are $12. I believe shipping will be about $5 for one shirt or $7 for 3 shirts. We’ll just charge you exactly what it costs to ship and refund anything extra you were charged.
Eli has REALLY been into fishing lately. It’s amazing how self sufficient he can be. He changes out his lures/worms and casts. I can hand him a pole and tackle box and he does his thing for the next hour or two or however long I let him. We bought him a full sized poll at Bass Pro Shops and he has been using it every weekend.
 |
| From |
 |
| From |
Well I guess that update was sufficiently lengthy. As always, thanks for all of your prayers. I’m sure my next update will be from NYC sometime the week of the 28th as Eli starts yet another round of 3F8 Antibody treatment. We are so thankful to have you along with us on this journey.
Facebook
Twitter