Another Round of 3F8 Started

Well, as Eli’s Twitter followers know, Dr. Kramer replied to an email I sent Friday afternoon asking her to kindly not make us wait all weekend for scan results. She said, “CT, MIBG and both MRs all looking great :)” The collective sigh of relief from everyone was palpable as were the tears of joy in the cases of some (you know who you are). 🙂 In a world where your life can be turned upside down with just one scan result, we are thankful every time Eli continues to get good results. We have several friends that were living life with good and clean scans, and then found out with one set of scan results that the cancer had come back hard and they are now at home with their kids on hospice with no treatment options (please pray for Aisy and Jensen and their families). I don’t ever think to myself that we could never be in that situation, so like the persistent widow in Luke 18, I keep asking God to heal Eli and let him win this battle against such a formidable cancer. As I have said hundreds of times (if not thousands), thank you so much for interceding for us as well in prayer.

Today was the first day of Eli’s 16th round of 3F8. We are certainly happy to be able to continue this treatment! It’s funny how the Nurse Practitioners always ask me the same thing every time we are here. “So we are done with Accutane, right? And we’re just doing 3F8 because he can’t do Temodar, is that right? Do we know how long we’re continuing 3F8 for?” I just respond with, “Well, probably until we feel it’s ok for him to try Temodar again or until he goes HAMA positive.” They nod in agreement and move on. I don’t like to dwell on the topic in case someone decides that they think Eli should be done with 3F8 for good. I realize that time is approaching at some point, but like I said, we are grateful for every round Eli gets in.

The pain today was pretty intense, but he was so tired (from staying up late last night in addition to all of the Benadryl he received) that he fell asleep after about 30 minutes of pain. He has been asleep for the last 2 hours, but his blood pressure dropped enough in combination with a high heart rate that his nurses have been waking him up every once in a while to make sure that he is responsive. They also put an oxygen mask on him to make sure his O2 levels were high enough. Usually he can’t stand a mask, but he’s just sleeping right through it. 4 more days and we’re done! This 9th floor is a tough place to be when bald babies to bald teenagers are shuffling down the hallways pulling IV poles behind them. As I’m typing this, I hear screams of “I can’t breathe!” and “Daddy it hurts!” from the rooms around me. The unpleasant reality of kids fighting cancer.

From Posterous Photos

This weekend was a nice one in NYC. Actually, we left for New Jersey with the Ronald McDonald House to go to a place called Dream Field, which is an indoor sports complex. They opened their doors to the kids and staffed a bunch of volunteers to play games and do arts/crafts with them. It was a really cool facility with 3 basketball/volleyball courts and one big area with batting cages and baseball pitching setup. Eli had an absolute blast playing basketball, freeze tag, kickball, pitching, and hitting several hundreds baseballs (I’m not kidding, the kid hit bucket after bucket of balls and never grew tired, unlike the arms of both myself and the volunteer who took turns pitching to him). I figured he would be wiped out from the day, but he rode the whole ride back with his new buddy Jacob as they watched a movie. Sunday was rainy and Eli wasn’t very fond of any of my ideas for how to keep busy, so we stayed at the house and enjoyed a great birthday party for our little buddy Nathen who turned 5 this week. They also had a magician at the house. We have seen a lot of magicians, but this guy is really one of the best ones I have seen. His slight of hand is really amazing and the adults were just as blown away as the kids were. It’s raining again today, but hopefully we get a few more sunny days this week.

Tonight they had a Hawaiian themed party with great catering. I did get a chance to meet a brand new family to Sloan from Oklahoma City that just arrived today. Their son, also named Elijah, is going to have a biopsy done on a neuroblastoma tumor in his neck by Dr. LaQuaglia. It’s a tricky spot with potential impact to vocal chords and such, so hopefully Dr. L and the team can give them some direction on what the next steps should be. His site is at: http://www.caringbridge.org/visit/elijahfowler

Eli’s first day of school is Wednesday, so he is going to miss his first week at Ankeny Christian Academy. Not much we could do about that, but we were happy to find out that a few of his friends from Developmental Kindergarten will be in his Kindergarten class this year, so he is very excited about that. We also have another fantastic teacher this year (Ms. Brenner) that already knows Eli and has been a proud prayer warrior in his army since last year. We’re excited to see him build on his work from DK with Mrs. Namanny.

Thats all I have for now. Thanks for continuing to check in on us!