Ok, I’ll admit it, I depended a little TOO much on Facebook.com to post about our trip and how things were going, which pretty much left the rest of you that aren’t on facebook in the dark. I apologize. This past month has really been quite a flurry of activity. After returning home from NYC, Eli went to Oklahoma City with Lacey’s parents to watch the National Finals Rodeo. He had a great time and got to meet a LOT of cowboys. He returned to us on Monday and Tuesday morning we packed up a rental car and drove down to Orlando, FL for a Disney/Universal/Sea World vacation!
This was not just ANY vacation though. This was a trip to Disney with about 11 other families we have met from the Ronald McDonald House in New York City! It was a fantastic reunion because some of the families we hadn’t seen for quite a while (since some of them weren’t in NYC at the same time we would be there for Eli’s week of treatment). Several volunteers from the Ronald McDonald House in NYC teamed up with several members of the NYPD’s 19th Precinct and a few other great people to raise money and organize a trip for us. They had rented 3 big vans to haul everyone around in and we stayed together the entire time. We did Hollywood Studios on Thursday, Magic Kingdom on Friday, a Character Breakfast and Animal Kingdom on Saturday, Universal Islands of Adventure on Sunday, and Universal Studios on Monday. Since we drove down, we stayed an extra day and went to Sea World as a family on Tuesday. On the way down, we were able to stop by and see one of Eli’s biggest supporters, Ms. Lori, who lives in Keystone Heights, FL and writes letters to Eli several times a week! We didn’t tell her we were coming and just showed up at her doorstep on Wednesday. It was great to see the surprised look on her face!
I don’t have the collection of everyone’s pictures yet, but I can point you to where I have uploaded the pictures from my camera! There is an album for each day we were in Florida. http://photos.hornit.net
We did have another round of Accutane in January, but that went fairly well with the typical dry skin issues as well as a few episodes of emotional breakdown. I have to say, we have been SO thankful for the lack of emotional side effects that Eli has shown with Accutane. Some kids turn into an emotional wreck for 2 weeks and thankfully Eli typically keeps it together really well. Eli only has to do 6 rounds of Accutane, so we are happy that there is only one round left!
We leave on Monday, February 9th for NYC. We will have scans on Tuesday and Wednesday and head for home on Wednesday night (our quickest trip to date)! We will also have Eli’s HAMA test drawn on Tuesday to see if he has developed an immunity to the treatment or if we can do a 10th round in March. Since we know his last HAMA score was kind of high compared to the past, and he had a lot less pain last round, we are expecting that he will be HAMA positive, but we would be SO thankful if we had the opportunity to do another round. The more rounds, the better! We will also be praying hard for scans next week. We are obviously hoping that Eli’s status will remain NED (no evidence of disease) and that there won’t be any signs of relapse.
Eli has had quite a bit of diarrhea lately, which Dr. Kushner doesn’t think is related to 3F8 or Accutane, so we are working with our fantastic pediatrician in Ames (Dr. Paschen). We have done stool samples (that have come up negative so far) and blood tests. So far we don’t have any answers, so prayers that we will figure out what is going on with Eli’s poor stomach would be appreciated. Eli loves his nurses at McFarland and loves to get them laughing while his port is being accessed. He also had a hearing test this week, which confirmed that he definitely has hearing loss in the upper register in both ears, but hopefully it isn’t enough that he’ll need any kind of amplification. It will just be something we have to pay attention to in case his learning seems to be affected.
Tomorrow evening we are going to our first Dance Marathon in Iowa City, which should be a lot of fun. We will get to see some of our old friends there that were treated in Iowa City with us a long time ago. Dance Marathon is a fantastic organization that really helps families that are dealing with pediatric cancer in Iowa City. They help pay for meals, hotels if the Ronald McDonald House is full, parking, etc. They also help buy things the hospital needs like pediatric beds and other equipment. It’s a great organization that raises over $1M each year. There is a Dance Marathon event in Ames every year as well, but the one in Iowa City deals exclusively with pediatric cancer. People raise money and dance all night long starting at 7pm on Friday night and ending on Saturday night. We will go check things out and enjoy the free hotel room they are providing on Friday night and make our way back home sometime on Saturday. It should be a really fun time and we’re looking forward to it.
Well, that’s it for now. Thank you for your continued prayers, even during my lack of updates to let you know what is going on. We are so appreciative of all of you that are in this with us for the long haul and that continue to remember to pray for Eli and our family.
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