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Two weeks? Oops! Sorry about that. It has been a pretty maddening two weeks to be honest. Eli continued to develop more and more sores on his legs, chest, abdomen, arms, etc. These sores became so painful that Eli couldn’t even stand up to go to the bathroom or walk. We kept waiting and waiting for biopsy results, but they kept showing nothing from an infectious disease standpoint. Which pretty much pointed to them being caused by the leukemia.
I think the darkest moment for Lacey and I came around Monday when the leukemia doctor said, “I can’t treat this with chemo because these sores will be an infection point and become very dangerous. There is nothing that I can do for him.” That last sentence is something we have heard doctors tell other families before, but never ours. Speaking for myself, it was probably one of the darkest times so far in this entire journey. It was very much an, “Is this seriously it? Is this really where the end begins?” moment. When the head leukemia doctor at Memorial Sloan Kettering Cancer Center says those 9 simple words, it has an impact. Lacey refused to accept that answer. While residents were telling her that we needed to wait for the sores to go away, she was insisting that it was unacceptable to drag things out and allow Eli to suffer. Dr. Prockop was out and I didn’t think she was coming back until the end of the week, but Lacey pushed until she got to talk to Dr. Prockop. We couldn’t imagine what else besides chemo would help these sores since they were from the leukemia. Dr. Prockop was actually back by Tuesday and took a look at Eli. She was surprised at how much better the sores looked by then (we agreed, they were improved and Eli’s pain was less), so she worked with the leukemia Doctor to concoct a chemo cocktail of Etoposide and Clofarabine (a chemo that will be used during transplant as well). We started that the next day (Wednesday) and he will get both drugs every day for 5 days (meaning Sunday will be the final day). We will repeat bone marrows on Thursday and see where we are at that point. So after a bit of a scare, we have a plan that we are happy with. Ultimately, God allows this to play out according to His will, but we make it no secret to Him what we want that to look like. He knows it anyway, so no point in sugarcoating it for Him. 😉
Thankfully, over the past 3 days, Eli’s sores have almost disappeared and his pain is almost totally gone. He is closer to being back to his normal self and we are seeing more smiles. He still has one pretty painful sore on his arm, but even that pain has diminished greatly in the past 2 days. The major battle now is with feeling tired and sick from the chemo. Today he slept until 2pm, only to awaken for an ultrasound of his arm (which showed absolutely nothing and was very much normal). He is vomitting every night, but thankfully only once or twice in the night and not all day long.
I have to admit, it is SO easy for me to post quick pics on Eli’s Facebook wall that I find myself doing that more and more often. Remember, you can visit the page and not even have a Facebook login to see the pictures! www.elisarmy.com takes you there. I refrained from posting the pictures of his bruised legs and nasty abdomen sores. I know I usually don’t hold those things back, but I didn’t want someone stumbling across his page and being shocked out of their chair. 🙂 Those updates also get pushed to Eli’s Twitter account, so if you watch that, you’ll see the Facebook activity reflected there as well. We really appreciate and love the comments you’ve been leaving, so thank you for that!
I can’t believe I haven’t mentioned the bowl game yet. Everyone should know by now that our family loves the Iowa State Cyclones. Lacey and I both graduated from there in 2001 and we enjoy going to the home games in Ames for nearly every single sport. You’ll remember that back in 2008 when Gene Chizik was coach, they invited Eli to be an honorary team member and all of the players wore Eli’s Army bracelets on the field. We were cheering LOUDLY in our hospital room in NYC when our ISU Cyclones upset the number 2 OSU Cowboys in Ames. Well when I heard that there was a possibility that our Cyclones might come to the Pinstripe Bowl in the Bronx (in Yankee Stadium), I started praying. Then, I noticed a sign on the 9th floor that said on December 29th, the players from both teams at the Pinstripe Bowl would be coming to visit the kids at the hospital, so I started praying harder! Then when I saw the ISU Football players tweeting that they were officially going to be bowling in the Bronx, I was celebrating! Can you believe that Eli’s favorite team from our hometown of Ames, IA is coming to NYC for a bowl game and coming to OUR HOSPITAL to visit the kids? Needless to say, we’re going to be ready for them. 🙂 There are at least 13 Cyclone football players on the 2011 Cyclone Football team that were around when Eli was honored in 2008. We even ordered 1,000 more bracelets because we are out of the first 2,300 we ordered and we plan on loading up the new Cyclones with bracelets! Remember, if you’d like a bracelet because you need a replacement, need an additional one, or just want one to give away, just email email@example.com to get instructions on how to obtain one (or more).
Here’s the feature ABC did in 2009 on Eli’s visit with the Cyclones
Thanks to everyone who has been praying, sending care packages and gifts to Eli and Isaiah, and for those that have been asking how they can help our family. We appreciate the support so much. For those in Central Iowa, remember that one of Eli’s teachers at ACA (thanks Ms. Brenner!) has arranged a benefit at Bandana’s BBQ in Ankeny to help pay for our Ronald McDonald House expenses in NYC. You can get more details here: http://www.facebook.com/events/318376461508623/
I also wanted to say a big thank you to the friends and family of our friend Charles Pazdera. Long time followers will remember us talking about one of Eli’s older roommates, Charles, who was fighting Ewing Sarcoma. Charles loved Eli and always sought him out when he was getting treatment or checkups on the 9th floor. Unfortunately, Charles passed away last year, which broke our hearts. Charles’s sister Kristen and mom Nancy organized a gift gathering for Eli and brought in bags and bags of gifts that were donated from all of Charles’s friends and family. There were so many gifts that were absolutely perfect for a 7 year old boy. One of the gifts was an official State Trooper hat/badge/plaque stating that Eli was an honorary State Trooper of Connecticut. What an amazing gesture! I know how much strength and courage it took for those two women to come back to the 9th floor where Charles spent so much time fighting cancer and we are so honored that they would do that for Eli.
I’ll try to update sooner than in 2 weeks. Especially once we have some results and decisions from the bone marrow biopsies next week! Obviously our huge prayer request is that we will see some response from this chemo and that the leukemia blasts would go down significantly to increase the likelihood of a successful transplant.