In Iowa

My new MO tends to be posting updates a bit late. I guess late is better than nothing! The 8H9 treatment went fine on Thursday. It was a long day since we got there around 9am and didn’t leave until around 6:30pm, but that was ok because we couldn’t really do anything anywhere else anyway. At least we had a TV that worked, but even Eli was getting tired of watching movies by the time we left. Thankfully we could get plenty of books from the playroom. I was thinking all the premeds might make him sleepy, but they pretty much just made him grumpy and even more argumentative than he normally can get. The injection was rather uneventful, just a bigger syringe this time than with the test dose (50 ml of radiation and antibody as opposed to 2ml). We left the hospital and went directly to the Helmsley Medical Tower, which was basically a hotel with a little kitchen. We couldn’t go back to the Ronald because Eli was still “glowing” with radiation and couldn’t really be held or be too close to other kids until the next day. We ate some food, mused over the cool iPod dock alarm clock that I used to blast some tunes from my iPhone, then we passed out and slept the rest of the night. The next day we had to go in to draw some fluid from Eli’s Omaya port in his head, then we were done! Eli requested we visit Brother Jimmy’s again for lunch, so we did that and enjoyed a movie night at the Ronald that evening. Our flight left to return home Saturday morning at 7am, so we were in a cab bright and early. We finally accomplished our shortest trip in NYC. Wednesday through Saturday morning!

We had a great weekend at home. Father’s Day was especially nice because I got to spend it outside with my two boys on the slip n slide!

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Isaiah’s Father’s Day present to me was to wash my motorcycle for me! 🙂

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Eli and Isaiah have had a great time playing outside and I’m glad we didn’t have to spend another ENTIRE summer in NYC! The rest of the photos are here:

I should also mention that Eli and Isaiah now officially have their first cousin since Uncle DoDo (Adam) and Aunt JoJo had a baby boy last Friday, June 19th. Eli and I were able to see little Owen via webcam for a brief moment on Friday afternoon and we will all be excited for the day we get to see him in person!

We took Eli in to the local clinic here in Ames to get his counts done and they are still really good. In fact, his platelets are still going up, nearing 200 today. They are expecting them to start heading down next week, but so far so good and we aren’t anywhere near being neutropenic right now, which is great. We return to NYC for scans on July 7th and hopefully by then we will have an idea as to what the next step will be. Ideally we would go into our next round of 8H9, but the doctors suspect that Eli’s counts might not be high enough for that. If that is the case, they would want to do 3F8, but the last time we checked, Eli was HAMA positive, so that might not be an option either. In that case, we would likely have to work on getting Eli’s HAMA score down so that we could do more 3F8, which is ultimately something they want to do. After Eli gets his second 8H9 treatment (whenever that may be), he will be put on maintenance oral Temodar and Accutane and then after a few more rounds of 3F8, that protocol is done. That paragraph probably made sense to the people who have been following Eli’s journey for a long time. For the people who are new to this site, you probably have a glazed look on your face and that’s ok. Basically, it means that we have more antibody treatments to go and we will likely be in NYC for the better part of July.

Two years ago today, I took Eli to our Pediatrician in Ames and was told after a CAT scan that he had a massive tumor that was probably Neuroblastoma and that I needed to call Lacey at work and we needed to get Eli to Iowa City ASAP. I was in a daze as I drove the 138 mile trip to Iowa City. Three days later, the head Oncologist at Iowa City came into the room and said, “It is Neuroblastoma, it is malignant, and it is Stage 4”. There was a pause and then he clarified, “It doesn’t go higher than 4, we have a big fight in front of us.” Two years later we are still fighting hard and it seems like more and more supporters are added to Eli’s Army every week and we appreciate every one of you. We have met some of the greatest people in the world because of this and have formed friendships and bonds that never would have existed otherwise and we are thankful for that. We have seen how others have been affected in a positive way by Eli’s story and we are thankful for that. Eli is still here with us and we are thankful for that. I could go on and on about the blessings that have come from this trial. God has a plan for Eli’s life and we are just blessed to be a part of it. Since you are reading this, you are a part of it as well, and we are thankful for that.