I wanted to check in now that we have completed the second day of 3F8 antibody treatment here in NYC. First of all, the travel from Ames, IA to New York City went well. We ended up doing the drive all in one day (for those new to our CarePage, Lacey gets deathly ill on airplanes, so we drive whenever she comes to NYC). Everyone has an idea for getting over airsickness, but it’s more than that, she’s tried it all. 🙂 We left at 5:15am on Saturday and just kept driving with only a few stops for gas and pulled up to the Ronald at 12:15am. Willie at the front desk wasn’t very happy about handling a late night check in, but we got a great room and were happy to not have to spend money on a hotel that night. There was an accident on I-80 in Pennsylvania, so our GPS really came in handy when we got off the interstate and did some back road driving to get around the stopped traffic. Sunday we were able to just hang out and see some familiar faces (including our adopted New York family, Barbara and Stewart Zobian). Then Monday came…
Just for some history, let me copy and paste my explanation of 3F8 for the new visitors:
Basically, starting last Wednesday, Eli has been getting a shot in the leg of something called GMCSF. This is a medicine that encourages growth of your “fighting” white blood cells. The cells that attack foreign cells in your body. He will get that every day to make sure he has as many fighting cells as possible. Then on Monday, we started the 3F8 antibody treatment. 3F8 is a drug that is partially made up of mouse gene and it essentially highlights any Neuroblastoma cells that it sees in the body. Neuroblastoma is really undetectable by the body, which is why it isn’t fought off. Now that the 3F8 is highlighting the Neuroblastoma, the body recognizes it as a bad cell and sends the white blood cells (which we have been increasing with GMCSF) to attack the Neuroblastoma. Unfortunately, the 3F8 also highlights nerve endings in your body, so the white blood cells also attack the nerve endings, which makes the treatment unbelievably painful. It’s incredibly hard to witness, but for about an hour, Eli is crying out in pain and is needing a lot of strong drugs and oxygen to deal with the pain, the hives, the high heart rate, and the drop in oxygen. Most kids are so doped up on drugs that they don’t really remember it very well, but those are the little kids. Eli has always remembered the pain, but knows that it’s important to do to get rid of any remaining cancer in his body. We have told him that the white blood cells are attacking the bad cells. Typically it requires Lacey and I both being there to hold him, put ice/hot packs on his back, rub his feet, whatever it takes to help him get through the pain. He will be pretty exhausted the rest of the day and then might be up for playing a little bit a few hours before it’s time to go to bed and then repeat the treatment again the next day. We do this Monday through Friday. Ideally, we’ll get 3 weeks at home and then go back for another week of 3F8. As long as he doesn’t develop an immunity to the 3F8 (called HAMA), he will be able to continue the treatments for up to 2 years or so, although if he is able to do more than 4 more rounds without developing HAMA (unlikely), it would move to a schedule of one week of 3F8 and 7 weeks at home instead of just 3.
That is basically how I explained the 3F8 treatment to Eli’s kindergarten teacher so she could be prepared for the stories that might come back from NYC (and of course so she would know how best to pray for Eli). We started 3F8 on Monday of course, and it all came back to us quickly as to how bad it could be. The pain hit Eli within 5-10 minutes and it lasted an hour. In true Eli fashion, he just bore down and endured through the pain and let us know exactly what he wanted (mostly just mom rocking him back and forth and holding him). This time, however, he didn’t really wake up and want to play later. He slept until about 9pm and then was restless for an hour or so until he fell asleep with some pain meds we gave him to let him fall asleep. He woke up this morning with very little residual pain, but he did complain once of tingling in his hands (a common side effect in older kids). You might think that Eli would resist going back to the hospital today knowing how much pain he was in Monday, but he jumped in the stroller ready to go and see his friends at the clinic. Today seemed to be even worse. He had pain for nearly 2 hours today, it came to him in two waves. The normal hour of pain during the treatment, and then another hour after of extreme discomfort. He also had hives really badly and at one point his lips were so swollen that he looked like he had a collagen appointment go wrong. Eli had so much pain and nausea that he threw up at the end of the treatment and then tried to fall asleep and get some rest. We brought him back to the Ronald McDonald House and he really looked terrible because he was still swollen and he had broken blood vessels all over his body from straining so much during the pain. He wanted to participate in the cupcake making and getting a balloon from the guy giving them out at the BBQ dinner at the House, but he was pretty miserable the entire time. He slept in his stroller while Lacey and I got to enjoy the company of our fellow Neuroblastoma families.
Here is a picture I posted of Eli on Facebook yesterday when the pain was starting (you should be able to see it even if you don’t have a Facebook account): http://www.facebook.com/photo.php?pid=2627422&l=ed2a6d40d6&id=556318363
For those that wonder why I post Eli’s painful moments for you to see, I do it so that you can catch a small glimpse of what it is like for these little guys fighting cancer. You can read about the vomiting and the pain and tears, but there is nothing like seeing it. The pictures don’t do it justice, but maybe it can bring the “realness” a little closer to you. Those that see the “realness” of it are a little more passionate about helping find a cure for childhood cancer. The pictures I post here are absolutely tame compared to what we have seen and compared to what other parents have gone through. We believe that God allowed this to happen in our family for a reason, and there is a reason you are following this CarePage. Whether we like it or not, childhood cancer has now touched us all and we have to make sure we are using it for His glory. Otherwise, what was the point of being a part of it?
Eli also needed a blood transfusion today, but they no longer are requiring his platelets to stay above 50, so we should hopefully have to do less platelet transfusions, which will be good for his school attendance. Last week, Eli was able to go to school every day except Friday, which was really nice. We really appreciate all of the prayers. We are hoping that maybe the next few days will be a little easier on Eli (most of the time the pain doesn’t last as long by the end of the week, so hopefully today was an exception) and we will certainly be happy to be heading back home!
PS, for those of you that wanted to know about the fate of the bullsnake I pulled from our basement, here is the YouTube video documenting his release:
Sorry that you have to copy and paste the links, CarePages has decided to stop supporting HTML lately, so I can’t simply embed the video or the pictures like I used to be able to. Good old CarePages!
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