Clofarabine Down

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Well, after 5 days, one of the chemo drugs is done. Clofarabine (we are told) is the worst of the drugs as far as nausea and overall feeling cruddy. So hopefully he has seen the worst of it. Eli has really been sleeping a lot, with a few hours at night of being awake. We feel like that is a good thing because when he is awake, his stomach is constantly hurting, so he might as well be sleeping as much as he can. Yesterday we switched Eli from Dilaudid to Fentanyl because I thought there might be a correlation between when Eli pressed his button to get a dose of Dilaudid and when he had to throw up. We will see if makes much of a difference. He didn’t seem to think that the Fentanyl was doing as good of a job, so we will increase the dose on that today and see how it goes. To top things off, last night Eli complained of his hands and feet hurting and feeling hot. The doctor wasn’t surprised and mentioned that this is a side effect of Clofarabine and since he’s had 10 days of it since coming here to NYC, it’s not a shock to see that he is experiencing it. The only solution is to press the button to get more pain meds and use cold packs on his hands and feet. Today Eli mentioned that they still hurt, but were a little better. The doctor seemed to think it should go away pretty quickly and the other chemo drugs don’t typically have that side effect.

Yesterday was the last day of Clofarabine and today he gets a chemo called Thiotepa. This one actually has an odd trait of escaping through the skin, so Eli will have to have several baths today and he’s not allowed to have any lotions or bandages on all day so that it doesn’t damage the skin by ‘trapping’ it in. Tomorrow and Wednesday will be the Melphalan, then Eli will have a ‘free day’ and Friday will be his ‘new birthday’ when he receives his bone marrow donor’s cells.

Speaking of the donor cells, the doctors did decide to give Eli T-cell depleted bone marrow. This should make this transplant less toxic for Eli as he’ll need less drugs to try to fight Graft Vs Host Disease. Interestingly, in order to keep Eli’s T-cells from attacking the donor’s marrow, he will be getting a drug called Rabbit ATG. This is a serum produced by rabbits that is used to attack T-cells. The idea is to kill ALL of Eli’s T-cells so that they won’t attack the new marrow. If he has a bad reaction to the Rabbit ATG, they will try a serum produced by horses. First mice with the 3F8 and now rabbits and horses. Sorry PETA, but I for one am thankful for the medical advances that we have come to realize thanks to God’s creation of both plants and animals. 🙂

The last week was certainly one to remember. As everyone knows, the Iowa State Cyclone Football Team came to NYC to play in the New Era Pinstripe Bowl at Yankee Stadium in the Bronx. You also know that 9 players from ISU came to the hospital to visit the kids on the 9th floor. At one point we had one of the head transplant doctors say, “Sorry, there’s no way they can visit, it’s just too risky. They can look in the window and wave, but that’s it.” Thankfully other people stepped in behind the scenes and made a visit happen for us. It honestly went as perfectly as we could have hoped. They allowed two players to come in and actually visit with Eli. They of course had to gown up, glove up, and put on a mask, but they were able to come right to his bedside and chat. We saw the list of players and specifically requested the two to come visit Eli.

Brett Bueker (#8) is a player who was around in 2008 when Eli was an honorary team member. He and I are friends on Facebook, so when I saw he was on the list, I sent him a message to tell him that we were excited to see them. He wrote back a great note about how he has still never taken the bracelet we gave him off of his wrist since that day in 2008 and how Eli has been very inspirational to him. Obviously he made the top of our list of players to invite. 🙂 We also invited Ben Dinkins (#88) because of Twitter. I noticed that before the visit, Ben was tweeting about shaving his head in honor of the kids with cancer and I also noticed that his Twitter profile pic was of him holding a huge fish he had caught. His profile said he was an avid fisherman, so I knew Eli would love to swap fishing stories with him. Both guys were amazing and Eli had such a great time chatting with them. Brett brought an ISU duffle bag full of customized Pinstripe Bowl ISU jerseys and a game ball signed by every single player and Ben pulled out his iPhone and he and Eli shared pictures with each other of their best catches. 🙂 Tom Farniok and Kirby Van Der Kamp also stopped by and were allowed to wave from the doorway with masks and gowns on. We had posters with both of those guys on them, so they signed them for Eli. He also had everyone sign the really cool Pinstripe Bowl football that the Yankees gave Eli.

As everyone would expect, I made an Animoto.com video of the visit! Enjoy…

Many of you also know that Eli’s story was on CBS as well as ABC. For those of you curious about NBC, they tried, but the hospital discouraged it because it was getting to be too much of a media circus. 🙂 CBS actually called me one afternoon before the players visited and within 15 minutes we had Skype going between their news room and my iPad and they were able to see Eli and I both that way. Here is that interview (major thanks to Emily Price whom I have met in the past and has done a great job of increasing the number of stories being done about pediatric cancer patients to raise awareness): http://www.kcci.com/video/30087080/detail.html

Then, on the day of the visit, ABC came along and Dave Zawilinski and John Walters did an interview and actually got the visit on video. It was fun for me to get to meet the guy that has been yelling “What a play by Aaron Horne!” every time the new ISU player makes a big play. 🙂 Here is that video: http://www.myabc5.com/category/190187/myabc5com-video?&clipId=6593091&autostart=true

Thanks to Jamie Pollard and the ISU Athletic Department (Janet, you are the best and we appreciate everything you’ve done for us), I was able to go to the Pinstripe Bowl on Friday with my brother and some friends. Lacey was going to go, but Eli refused to let her leave his side, so they watched the game on ESPN. 🙂 It was a perfect day for a game and even though the Cyclones lost, it was an awesome experience to see a college football game in Yankee Stadium. We had great seats and it was an experience I’ll never forget. Thanks also to everyone who sent Eli boxes and boxes of posters and ISU stuff. We made use of every single item (including having posters for the players to sign for other kids at the hospital) and received TONS of comments from everyone who saw the room about how much they loved the decorations. THANK YOU for your generosity, especially those Hawkeye fans who were actually able to bring themselves to buy ISU stuff to send to Eli. In fact, we actually got more ISU stuff from Hawkeye fan families than ISU fan families, how crazy is that?

For those of you that did a double take when I mentioned my brother, it’s true, my brother from Jefferson City, MO was able to fly up and visit for a few days thanks to our generous friend Steve. Not only that, but Lacey’s parents (and her sister) were able to visit this last week and celebrate Christmas with us. After all of our visitors, one of the nurses mentioned that technically we weren’t supposed to have ANY visitors once the chemo had started! I pointed out that we didn’t know and no one had told us that and she admitted that they had dropped the ball on explaining the rules to us. Boy am I sure thankful they did! The official rule (which we will start obeying now that we know and now that all of our visitors from out of town are gone) is that there should only be parents in the room. Ideally, only one parent that never goes outside to help reduce the risk of bringing anything from the outside into the room. We will have to continue that until approximately 10-15 days after the transplant (which again, happens this Friday.) All of this is done to protect Eli from any chance of catching something at his most vulnerable state of course. In fact, anyone in the room (including parents) has to wear a mask at all times and the nurses have to wear gowns and gloves as well. I draw the line at sleeping in my mask, but the doctor said I could take it off when I sleep since I’m a few feet away from Eli.

The other thing they forgot to do was “wash down the walls” before we moved rooms. This is a process they have to do for all transplant patients and it involved me taking down ALL of our ISU posters and moving EVERYTHING in our room out to a crib in the hallway and Eli had to have his bed moved to another room for a few hours while they did it. I couldn’t believe I had to move everything again after spending 2 hours moving it here the first time. Thankfully our friend Rich was visiting and was able to help me move everything out.

Please continue to pray (now more than ever) for Eli. We are way beyond the point of no return now. I noticed that one of the FAQ’s in the consent was “What if I decide to discontinue the treatment?” and it said “you should understand that if you withdraw from this treatment plan

after

administration of high doses of chemotherapy, but

before

infusion of the stem cells, you might die because you would be left without enough cells in the marrow to produce the white blood cells, platelets and red cells necessary to sustain you. A transplant of stem cells is absolutely necessary to restore the body’s capacity to make blood.” In Eli’s case, you could substitute the word ‘might’ for ‘would’. As always, thank you for your continued prayers. We need them and appreciate them very much!