I’m not sure how I have subconsciously started a one week update schedule, but I have. Things continue to go well at home. Eli is so full of energy at home in Iowa, it never ceases to amaze me. I don’t know how Lacey keeps up with the two of them all day, I come home for lunch and Eli alone can wear me out in 45 minutes.
As of yesterday, the Accutane is done! You better believe I’m going to be asking you all to pray for minimal side effects again in a few weeks when we start Round 2 of Accutane because they worked miracles this time. We noticed slight dryness of skin on his nose and in his ears the last week of Accutane and that is about it! I honestly don’t think there were any emotional changes. Thank you, God. I realize that it can be cumulative and that subsequent rounds of Accutane will probably be worse, but it was so great to not have to deal with moodiness and painfully dry skin the first few weeks we were back in Iowa. Lacey jokes that we found the best thing for the dry skin Eli eventually had. Chicken grease. 🙂 In all seriousness, everyone knows that Eli loves his “chicken on the bone”. Doesn’t matter where it is from. KFC, Hy-Vee, Hickory Park, our grill, whatever. As long as it’s a chicken leg and not too dry, he’ll eat it. Usually he doesn’t just eat it, he wears it. We noticed that after we got done cleaning up after a carnivorous poultry attack, that Eli’s face looked great and not at all dry. Now, I don’t expect that Avon is going to start bottling chicken grease from KFC and selling it as an advanced healing skin ointment, but it sure helped with Eli’s dry face. We were prepared with other ointments and creams that were suggested to us, so maybe those will come into play next round.
Thursday night was the Make-A-Wish fundraiser at Cold Stone Creamery. Thanks to everyone that stopped in to support that organization (including the great Ames Make-A-Wish ladies). We got to meet the owner of the Ames Cold Stone, Steve, who is incidentally a cancer survivor. I don’t know how much money they made, he was predicting a few thousand dollars, but we really enjoyed the event. We ended up being there for an hour and a half and got to give out a few dozen more bracelets.
Last Friday was my birthday. I remember last year on my birthday when I left a Becker Underwood meeting, jumped in the car, drove to Iowa City with Lacey and Eli, and took Eli to a CT scan and bone marrow biopsy. Those bone marrow results were positive for Neuroblastoma. This year, on my birthday, I got an e-mail from Dr. Kushner in NYC. It said, “Your wife called asking about bone marrow biopsy results. All four sites were clean.” Talk about a great birthday present! The bone marrows were clean last scan, but they had only done 2 spots. This time they tested 4 and they were all clean. I told Dr. Kushner that he won the award for giving me the best present. However, my celebration didn’t last long as I read Brody Hurt’s CaringBridge page that night (http://www.caringbridge.org/visit/brody.a.hurt).
Here is how it started… “We have tried to start this message several times, the right words don’t come. Yesterday, Dr Modak met with us and said the words any parent dreads. The neuroblastoma team says that there is not a cure for Brody by man or medicine and they felt that aggressive treatment should be stopped to spare him the side effects.”
I think my heart actually missed a beat or two. I had to reread the last sentence to make sure I had read it right. However, it was right there in black and white, “Shawn and I made the decision to bring Brody home and not seek aggressive treatment.” Wow. This one hits really close to home for us, and not just because they are from our neighboring state of Kansas. Brody was diagnosed September 17th, 2007 (a few months after Eli) and we met them around Halloween time last year. We spent a lot of time together at the Ronald McDonald House in New York. Brody’s older sister, Kylie, is one of the world’s best babysitters and Lacey often threatened that she was going to sneak her home with us because she was always so great with our boys and is such a sweet girl. Brody has an amazing smile and is the world’s biggest KC Royals fan (my favorite team growing up). He and I were probably the only guys in NY that were smiling when the Yankees got beat by the Royals (which actually happened 50% of the time this season). This is definitely one of the downsides to making friends at the Ronald McDonald House. As you get closer to these other families that are going through the same battle you are, you start to feel their pain when they get bad news. Granted, you share their joy when they get good news as well, but once they become a part of your family, the hard news is hard to accept. God isn’t done writing His story on Brody’s life. Brody is living out God’s purpose to the fullest. Dr. Modak said that there wasn’t a cure for Brody by man or medicine. He rightfully implicates that the door is wide open for God to take whatever action will best meet His will. Obviously we would appreciate it if you would join us in lifting up the Hurt family in prayer. As I posted on the Hurt’s CaringBridge site, Eli’s prayer Friday night was short and sweet: “Dear God, please make Brody feel better. Amen.”
We would also appreciate prayers for Eli’s HAMA results. We sent them off on Thursday and tomorrow is the day they do the test so we should know the results Wednesday. Wednesday is also the day we start the daily GMCSF shots so Eli’s white blood count will rise in preparation for the 3F8 treatment in New York next week. After 5 days of painful antibody treatment, we’ll return home for another 3 weeks. Eli mentioned the other night that he “kind of misses New York.” We asked him why, and of course it is because he misses all of his friends.
We are trying to get Eli involved in things here so that he can also start making friends in the Ames area. It was Eli’s first time at Sunday School in over a year yesterday and while the separation was a little tough, he did just fine. Thanks for helping him settle back in to things DeBoest family! Uncle DoDo and Aunt JoJo from Missouri were in Omaha on Friday night, so Saturday night they decided to “swing over” to Ames and pay us a visit. They ended up staying the night and coming to church with us in the morning. After church we went to lunch at Hickory Park and when I tried to pay, the waitress told us that someone had already taken care of it and she wouldn’t tell me who. So “thank you” to whoever you are for feeding us and getting us one last dose of Chicken Grease Healing Ointment on Eli’s face. 🙂 To say that we are looking forward to this weekend’s festivities with the Iowa State Cyclones would be an understatement. Jonna called me again today to make sure we knew when and where to meet her for Friday night practice. You can be sure there will be pictures taken and posted.
By the way, thank you to everyone who has been asking us about Eli’s DVD collection. I have remained silent on that topic here, but have been working diligently with the Academy Bus Company in Hoboken, NJ to come to a resolution. The official word from Academy is that the DVDs are flat out gone. The guy I was working with said he had done all that he could do short of water torturing the people he suspected were lying to him, so I sent a letter to the Chief Operating Officer (Tom Scullin) explaining the situation. Fordham from the Ronald McDonald House was kind enough to print my letter on Ronald McDonald House letterhead to show their endorsement and mail it out for me along with a print out of an Amazon.com shopping cart that contained all of the DVDs that were lost in that binder. I essentially tried to appeal to Mr. Scullin’s better nature and asked Academy Bus to pay for Eli’s DVD collection to be restored. We will see what they say. I promise I will keep you all posted.
Depending on how busy this weekend is (I’m guessing VERY busy), my next post might hail from New York City. We’d appreciate your prayers for safe travels this weekend!
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