The last two times we have come to NY, it has been a very tough week, and not just in regards to Eli’s treatments. As I mentioned in my last update, the pain has officially come and the last 4 days have been full of screaming and crying. That in itself is tough, but at least it somewhat indicates that things are working the way they are supposed to. However, there is more to this new world we are in than just treatments. There are bonds and friendships that form and involvement in the lives of other kids that are very emotionally binding. Some of you remember us asking for prayers for 19 year old Devin Reid who went home several months ago. He passed this week. Devin was a great kid and really gave us parents some insight into what it is like to go through treatment since our four year olds don’t have the verbal capacity to really explain it. I’ll never forget the smile on his face when he explained what a rush it was to get propophol, the medicine that puts you under for procedures like bone marrow biopsies. He told us the reason that our four year olds like it is because it gives you an amazing high that lasts not nearly long enough. We also heard of one bad relapse in a girl that was NED and one more prescription of “go home and make her comfortable” this week.
Then to add insult to injury, as we were leaving the hospital yesterday, two people ran into the elevator carrying a unconscious teenage girl hooked up to a chemo bag. One of them was a hospital staff that had obviously been thrown into the situation of helping carry her and the other person didn’t appear to be related to her. As we were trying to get out of the elevator, I heard the lady say, “They just said to get her up to the 9th floor” and the other person simply said, “I think she’s gone.” In all of my life I have never been so closely exposed to death and the profound effects of it as I have been this last year. In order to win the understatement of the year award, I will simply say that “Cancer stinks, but God is in control.” I’m not sure I can put into words all that I am learning through all of this, and frankly I don’t think I really know yet, but I hope time will tell. As I figure it out, I’ll be sure to let anyone know that cares to listen. 🙂
Many of you joined us in becoming huge fans of Coleman and Caden Larson, the twins from Iowa who also put their mark on NYC and tens of thousands of hearts around the world. Coleman passed away on Monday and got to hear those sweet words from his Creator, “Well done, Coleman. Come enjoy your reward with Me.” Reading Peggy’s update on Christmas Eve gave us a sick feeling and reading her update this week felt like a punch in the stomach. We have grown so close to the Larsons over the past year and a half and Eli loved playing with Coleman and Caden. Before we left for NY, I asked Eli if he wanted to mail Coleman and Caden the picture he made for them. He said, “No, I want to give it to them in person.” I remember praying that he would get the chance to do that when we got back. I haven’t told Eli about Coleman yet, mostly because I want Lacey to be there with me when we tell him. This is by far Eli’s closest friend to have lost his battle with cancer and honestly I don’t think Eli has ever rationalized that cancer can take away a kid’s life. We don’t know how he will internalize that and associate his own cancer to dying, but knowing the way his mind works, it’s a likely scenario. Our hearts really ache for Caden, I can’t imagine the pain he is feeling right now. Eli and Caden loved playing together, which is something I hope they can continue to do for a very long time. Scott and Peggy also became very close friends and again, we can’t begin to empathize. A friend once said, “I have noticed that by the time a child has been through so much and it’s their time, the parents don’t struggle with letting them go. They struggle with filling the void their child leaves behind.” In Coleman’s case, he has left a void for many of us. Of course, it is killing me that we’ll be flying home during Coleman’s service and won’t be able to go. Please pray for the Larsons and the Reids.
Ok, sorry to be such a downer, but the reality is that even during the times that things are going well for our little guy, we are involved in a world where that is not the case for everyone. Speaking of our little guy, as I said, the pain is here in full force and I’m relieved to only have one day of 3F8 left in Round 9. The last two nights, Eli has had residual pain in his hands and feet for a few hours after the treatment. Hot packs on the feet typically take care of things, but that is something that is really common in some kids and we haven’t had to deal with it in the past. In reality, we are pretty fortunate in that Eli is back on his feet and ready to play each evening. Some kids have a lot of residual pain and nausea all week long! Today when we were heading back from the hospital, Eli randomly said, “Hey dad, you know when Jesus died on the cross for our sins?” I said, “Yeah.” He said, “How old was he?” I answered, “33” He said, “Is that older or younger than Papa?” I replied, “Well, that’s younger than Papa and older than me and mommy, but it happened a very long time ago.” That was the end of the conversation. What I would like to know is what was going through his little mind 3 minutes before he asked that question. I asked him why he asked and he said “I just wanted to know if he was older than me.” I don’t think that helps me clarify where the question came from, but I enjoy the privilege of answering them regardless.
Wednesday, Barbara from Candlelighters, NYC and William from FAO Schwarz arranged a private party upstairs where the piano from the movie BIG is located. The 19th Precinct drove us there in a police van and Mary from Fiber Hair Spa showed up with some gifts for the kids’ goodie bags. We ate pizza, played on the piano, wore silly hats, and then after the store closed, a toy soldier gave us a tour of the entire store. We had a fantastic time and our amazing official Candlelighters, NYC photographer (professional sports photographer Anthony Causi) was there to take some great pictures. You can see all of the pictures from the night here (the first 25 amazing photos are from Anthony and the rest are from my amateur hands).Of course I had to make an Animoto video with the pics:
I also posted my favorite video of Eli playing on the BIG Piano on YouTube:
Today we knocked out the last day of 3F8 round 9 and are ready to pack up to come home on Saturday! We are more than ready to return home. We actually have to come back to New York for scans during the first week of February, but it will only be for 2 days (the 5th and 6th), so it will be a very short trip with no 3F8 treatments involved. Our next 3F8 treatment (if by some miracle Eli hasn’t developed HAMA), would then be in March. As always, thank you so much for all of your prayers. Also, thanks to everyone who added me as your “friend” on facebook. My cell phone was going crazy all night with text messages from facebook telling me that someone wanted to add me as a friend. I felt very loved, even if I knew it was because people wanted quickie Eli updates. 🙂
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