Well, I just realized that I never posted a Twitter update that we made it home safely. Sorry about that, everything was kind of a whirl wind of activity. First of all, Saturday was Lacey’s birthday, so we decided to go to Adventureland to celebrate. As soon our plane touched down, we ran out to meet her and went straight to the amusement park. We had the extra special treat of having Eli’s little friend Dakota from Cedar Rapids (CP: DakotaJadeNeblock) and her mom and sister waiting for us there to enjoy the day with us! It was a great day and we were so glad that the girls made the trip west to join us.
We are testing Eli’s HAMA level and should know the results next Tuesday. If he is HAMA negative, he will return to NYC for his final round of 3F8 before we attempt the low dose oral chemotherapy (Temodar) again. If his counts don’t suffer while on Temodar, we should be able to finally and officially complete the 8H9 protocol he was on for the spot on his brain!
Monday was Eli’s first day of school.
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| From August 2010 |
He has a few buddies from Developmental Kindergarten in his new Kindergarten class and he is really enjoying it. He had a VERY hard time sleeping the night before and he kept coming into our bedroom asking ‘what if’ questions about going back to school. He has another awesome teacher this year and she has given us the opportunity to speak to the other parents about Eli’s needs. I don’t know if any other cancer patient families are given the opportunity to do something similar, but this is what we shared with the other parents. Lacey actually spoke to them at a Parents Meeting and we sent this home with the kids whose parents couldn’t attend:
For those of you that weren’t able to attend the ‘Back to School Night’ meeting, there were some important things shared about one of our Kindergarten students, Eli Horn. The Horn family is from Ames, Iowa and Eli came to ACA last year as a DK student. Eli was diagnosed with Stage IV Neuroblastoma cancer in 2007 and has been travelling back and forth from Iowa to New York City where they offer advanced treatment options for his rare kind of cancer. As Eli is still currently in active treatment, we wanted to let the parents of Eli’s classmates know some information so they are better prepared for things their kids might say or ask at home. There are times where Eli will need to go to New York City for a week at a time and there are times where he will suddenly miss school for a day to get a blood or platelets transfusion at Blank Children’s Hospital in Des Moines. Aaron and Lacey (Eli’s parents) are very open about discussing this and if you have any further questions, you are more than welcome to visit Eli’s website (www.elihorn.com) or email Aaron and Lacey at: aaron&lacey@hornit.net
1.) Eli went through many rounds of high dose chemotherapy from 2007 to 2009. As many of you may know, chemotherapy essentially kills a body’s immune system and it has to ‘recover’. Eli’s immune system is lower than most and any vaccines he received as a baby have been wiped away. This means that Eli is at higher risk of serious illness exposure than most kids as his immune system can’t fight off what normal immune systems can handle. We would simply ask that if your child has or has been exposed to a serious illness, that you let Ms. Brenner know right away. We don’t want to influence your decision on whether to send your child to school or not, we just want to stay informed so we can pull Eli out of school if there is something going around. This is especially important in the case of chicken pox, which is VERY serious for immune compromised individuals. If your child was exposed to chicken pox, even if they have been vaccinated, please let Ms. Brenner know the details so she can pass them on to us.
2.) While there were times last year that Eli was bald, the treatment he is currently on does not cause hair loss. He might resume a lower dose chemo later on that may or may not cause his hair to thin, but otherwise there isn’t anything extremely obvious that you would see to know that he is a cancer patient. He does have a bump on his head where he has a port that was used for medication (meaning he has to be overly cautious about not bumping his head or having something thrown at his head). He has a port in his chest that is used to administer medicine and to draw blood and he also has many scars on his belly and back that they may see if he shows them or if his shirt comes up. He also has some tattoos (very tiny) that were used for radiation. If your child asks you about Eli’s ports, scars, or tattoos, please speak freely about why he has them. We always try to explain them in a positive light so that Eli doesn’t think that there is something ‘wrong with him’, although he is fully aware that most kids don’t have ports. Since he has been fighting cancer since he was three and a half years old, all of his friends at the Ronald McDonald House have ports and it wasn’t until he went to DK that he realized that having a port wasn’t ‘normal’ for a kid to have.
3.) Finally, in regards to the “C” word. Cancer is often discussed in a household as something that causes people to die. For example, “grandma is dying of cancer”. We would ask parents to tread carefully on how they speak about cancer and specifically references to death and suffering. Eli hasn’t made the connection between his illness and the fact that he might not beat it. While we realize the day is coming soon, we want to try to protect him from thinking he will die as much as possible. He isn’t blind to the consequences of cancer. He does know some of his friends have died from it. We just hope parents can be sensitive to how they speak of it so children aren’t coming to school telling Eli he is going to die. Kids are kids and we completely understand that. We know they parrot the words of the adults in their household, so as long as they are hearing the right things at home, it shouldn’t be a problem.
Eli has been increasingly sensitive about being different and not wanting to talk about treatment or his port/scars/tattoos. We are letting him take the lead and he decides how much or how little he wants to share with his peers. Sometimes he doesn’t want to talk about it and sometimes he’ll gladly lift his shirt to show off his ‘battle scars’, which he has bravely earned over the last 3 years.
Hopefully this helps you as parents not be too shocked when your child comes home talking about Eli’s tattoos or scars. As we said, we are more than happy to talk about this in detail. We have shared Eli’s journey online every step of the way, so if you want to keep up on what’s going on with Eli’s treatment, you are more than welcome to visit his website at www.elihorn.com and sign up for his CarePage. We certainly appreciate all of the support and prayers we have received from the friends we have met through Ankeny Christian Academy. We look forward to getting to know you as Eli makes more friends in Kindergarten this year. Thanks!
I know I am late to the game, but part of the reason for our update today was to join the bandwagon of parents that are promoting the new Pepsi “refresh everything” campaign where Dr. Cheung is in the running to receive $250k if the “Arms Wide Open” campaign gets the most votes. Here are the details. If you have ever asked us the question, “What can we do to help?”, our answer has been “prayers”. Through the month of September, our answer is, “Prayers and vote daily on Pepsi’s website for Arms Wide Open.” 🙂
Pepsi has a ‘Refresh Everything’ campaign and the charity with the most votes receives a $250,000 grant.
Please vote daily for ‘Arms Wide Open’ who has entered to FUND LESS TOXIC THERAPIES FOR CHILDREN WITH CANCER. If it wins, the money will go directly to the neuroblastoma doctors at Memorial Sloan Kettering for the development of the ‘Turbo 3F8’. Just click on the following link, it takes a few seconds to register then another few seconds to vote. You can vote once a day until Sept 30th. Please vote EVERY day!
http://www.refresheverything.com/armswideopenchildhoodcancerfoundation
You can also text your vote. To vote from your MOBILE PHONE text Pepsi at 73774 and enter 102653.
I’ll leave you with this awesome picture of some of the McFarland Pediatric staff in Ames, Iowa. Eli is blessed to have the most amazing nurses in our home town. Not shown here are several of his doctors, as well as the hematology lab that does his CBC finger pricks so often that also wear their Eli’s Army shirts to work with pride! Absolutely amazing. Don’t forget, if you’d like an Eli’s Army tshirt, there are still some available at
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| From August 2010 |
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