Well, we have made another whirlwind trip to NY and back since I last updated. Eli had his scans on 8/27 and 8/28. I wish I could say that everything was totally clear, uneventful, and we were all set to start 3F8 as scheduled on the 14th, but that isn’t the case. I met with Dr. Cheung on Friday and he told me, “The MIBG is fine, but we see an enlarged lymph node in his chest.” The words that came out of my mouth were, “Ok.” The words that were in my head were much different. Dr. Cheung then asked me if Eli happened to be getting over a cough or cold or anything. I told him that in fact he had been dealing with a slight cough for a few weeks and was finishing up an antibiotic that was aimed at clearing up an infected cut on his knee. He also had inflammed sinuses noted in his last MRI in Iowa. Dr. Cheung said that there is a good possibility that it is simply an inflammed lymph node from an infection and not Neuroblastoma. In fact, if it was Neuroblastoma, it would have most likely “lit up” on the MIBG, which it didn’t. So he had a sense of hope at least. He asked us to repeat a CT scan in Iowa on September 11th because we needed to give it two weeks to see if it shrinks back down (meaning an infection) or gets bigger (meaning a relapse). He gave me a copy of the MIBG and CT report as well as a CT with the scans on it so the Iowa team can compare the 1.2cm x .49cm “spot” in the NY scans to the new ones we are going to do in Iowa on the 11th. Since this impacts how we move forward, we pushed back 3F8 yet one more week to the 21st. If the lymph node continues to grow, indicating Neuroblastoma, we will obviously need to do yet another surgery (something we were hoping we were done with by now) to resect it and then I am sure we would be back in chemo world. So, if it isn’t totally clear to you, we are of course praying that this is a swollen lymph node from an infection and not Neuroblastoma. September 11th will be a significant day for a lot of people, but it will be especially nerve wracking for us as we wait to hear whether Eli’s lymph node in his chest has grown or not.
Otherwise, we have been home and enjoying it immensely. Eli has been loving school (although he has only been able to go for 5 out of the 12 days school has been in session. At least twice a week we are at Blank Children’s Hospital in Des Moines getting blood, platelets, or both. It made me so happy to be sending him to school on Wednesday because I knew that they would be having a chapel service in the morning. Yeah, chapel AT SCHOOL. So cool. He had a great time. The kids have to dress up a little on Wednesdays, she he was sporting a polo and kakhi shorts and looked like such a little man.
Last night I got to play Jeff Corwin and wrangle a four and a half foot long bull snake out of our basement. Now, I am used to having to get up the courage to grab the little 12″ guys when I see them on my basement floor, but this was a bit of a different story. It is a terrible feeling for me to turn on the lights and see a snake because what I WANT to do is turn the lights back off and pretend I never saw it and just ignore it. However, I KNOW I have to take care of it. I have seen bigger snakes in our yard, but this was by far the biggest snake I’ve ever seen in our house. I grabbed an old aquarium I had in the basement and set it next to the sump pump pit where the snake was hanging out. He was draped around the sump pump pipes and rattling his tail at me (yeah, that was a calming sound). I prodded him a bit with a long piece of pipe I had in the basement and he never struck at me, so I grabbed his tail and pried him away from the sump pump line (which he was gripping onto with unbelievable strength for an animal that has no hands). Thankfully he dropped into the aquarium without issue. I carried it upstairs (lid securely on) and placed him outside just as Eli and Isaiah were getting home with Lacey. They were THRILLED (the boys, not so much Lacey) and Isaiah put his finger on the top of the cage and hissed at the snake. The snake wasn’t impressed, so he gave his own hiss and struck at Isaiah’s finger (thankfully safely on the other side of the glass). Isaiah said, “Whoa! Bite!” Then he proceeded to hold his finger and walk around for the next 5 minutes saying “Bite” as if he had really been bitten. 🙂 I haven’t given the snake his sentence yet. I’m thinking I will likely dump him off in a field far away from ours (I really don’t want to see him in my basement again). For now, he’s sitting in his cage on the front porch eating grasshoppers that I have been throwing in to him. Thanks to all of my facebook friends who have recommended everything from “Eat him” to “Make him into a belt” along with the typical responses of “let him go” or “kill it”. If you’re on Facebook, you’ve probably already seen the pictures. I will try to upload some to http://photos.hornit.net soon.
The Beat Cancer tshirt sales went crazy. Thanks to everyone who ordered shirts. We sold 3,200 shirts and bought about 800 more in inventory because the shirts kept selling well past the August 25th deadline! If you didn’t get a shirt ordered, you can still order one, but you just won’t get it by September 12th. For those of you that did order them, I know some of them have shipped out already and the rest are going out this afternoon and tomorrow so everyone will have their shirts by the big day. Speaking of the big day, it’s going to be a great time. We will have a tent (number 24) in parking lot A4 with a sign that reads “National Childhood Cancer Awareness Day”. We will be right across from the practice facility and Jack Trice. If you are going to be at the Iowa vs. Iowa State game, you really should stop by and say hi. You will see hundreds (maybe thousands) of Beat Cancer shirts because there are going to be a lot of childhood cancer families at the game. If you did not get a shirt ordered and you want one by game time, and if you live in Central Iowa, you have one more opportunity to be guaranteed a Cyclone or Hawkeye themed shirt! One of the members of our committee will be setting up a table for shirt sales at Hy-Vee in West Des Moines. Here are the details: Saturday, September 5th, 2009 from 10am to 2pm, at Hy-Vee, 1700 Valley West Drive, West Des Moines. For those of you that ordered your shirts (some of you way back on July 27th), know that your shirt has been made and it either shipped yesterday or will likely ship today or tomorrow! Thanks again for all of your support of this “little project” that we thought might sell a couple hundred shirts.
There are some prayers needed for other families today. These are only two of the many families that need prayers, but these are near and dear to our hearts. 7 year old Owen Lea passed away after battling Neuroblastoma for 6 years. He had many, many relapses, but he and his family fought for a very long time and were full of hope until the very end. Karin was a well known comforter to other parents as they went through treatment and relapses, all the while dealing with her own son’s treatments and relapses. Please pray for that family as the reality of losing their son continues to sink in. http://www.caringbridge.org/visit/owenlea
Also, for little Caden Ledbetter who has continued to decline in health since we last saw him playing in our room in NYC. He is such an adorable little boy and my heart sank as I read his mom’s latest caringbridge post. Her description of what Neuroblastoma is doing to his body was very disheartening. It is hard to fathom that this is the very same cancer that our son is battling, “Thank you all for your continuous prayers. We are still in need of your on-going prayer. Caden has survived another day though he is heavily sedated. It appears that the bleeding was stopped and we are are so grateful to God for his guidance in this. I wish this meant Caden could go home, but it doesn’t. He has an extremely distented abdomen that is filled with free-fluid, blood and 2 large tumors, and he has left lung pleural effusion (fluid). These circumstances are making it very difficult for Caden to breath and we have been asked if to make a decision on whether or not we allow them to resuscitate Caden if he should “code”. Again, we have been told that there is not much hope of either of these things resolving. THIS IS NOT WHAT WAS SUPPOSED TO HAPPEN. Yes, we knew our son would probably die from this disease, but not this way. Tuesday, they were asking us to consider sending Caden home on hospice care this Friday, and now they don’t think Caden will make it home at all. We’ve told Caden it’s ok if he wants to rest; it’s ok if he wants to go be with Jesus who will take away his pain and make him feel better. Still Caden fights. We are so grateful for his time with Caden, we just wish he was more “himself”, responsive, interactive, cuddlely, laughing and so much more. Please pray – pray as you are led to pray. We are praying that Caden will be healed and out of pain – whatever that looks like to God at this time. We are praying for a miracle with all the fluid in his abdomen and lung, but we also want Caden to feel free and not afraid to go with God if that is where he is called to go. Thank you all.”
http://www.caringbridge.org/visit/cadenledbetter
We have some of the best support imaginable and we are so thankful for that. Please know that we appreciate all of you and are blessed to have you praying for Eli and for the other little Neuroblastoma warriors we have met along the way.
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