We left home early two Fridays ago and headed for Tennessee to meet with a realtor and get our house there listed for sale. We spent the afternoon there, and continued our drive to Houston. We made pretty good time and decided to take the kids somewhere on Saturday to break up the trip. Ben searched online and found a trampoline park in Little Rock, Arkansas close to where we were going to be passing through and practically begged me to stop there. We plugged it into the gps and headed in that direction. The lines were crazy long and the kids were wild from being in the car so long. I really wanted to leave, but Ben was adamant he wanted to jump on the trampolines. So we waited and before long all five of us were jumping and having a good time. Josh begged to go on the kid trampolines so I encouraged Ben to hang out and watch with me while the kids jumped for awhile. We had been watching them play for about 5 minutes when Ben started to say something and fell forward. He fell into the center of the kids play area and started having a seizure. I dropped to help him, trying not to draw the attention of the entire place while an incredibly nice mom sat down with my three kids to chat while we waited. The seizure was longer than usual (over 15 minutes) and while I told them paramedics didn’t need to be called, the manager and 2 nurses who witnessed him were adamant that they call for help when it continued for so long. The paramedics came and chatted with me while the managers filled my kids with sugary drinks and candy and we all reached the same conclusion that it was best for us to get back in the car and continue driving. They helped Ben to the car while I got the kids shoes on and ran them to the restroom. Then we continued on our way.
When Ben woke up Sunday he was nauseous so I took the kids to breakfast in the hotel and then sat them in front of the television with his phone (in case of an emergency) while I reloaded the car and got things ready. When checkout time rolled around he felt a little better so we set out on the last three hours to Houston. A few quick stops for him and a lot of snacks for the kids and we made it there in record time. His mom flew in and we picked her up to head to the apartment (overstatement) we rented for our first week.
We spent all day Monday in appointments. We left the kids and Amy at 9am and didn’t return home until almost 5pm. We met with doctor after doctor. He had a physical and we met with the financial consultant to discuss the treatment and costs associated. We scheduled an MRI for Tuesday morning to check on the progression of the tumor and with the help of my parents, made a very large deposit towards his treatment. They told us they would call us the next day with a time for his Hickman port to be placed and that treatment would start immediately after the port was placed.
Tuesday he had his MRI. We were able to bring home a copy of the scan and in the afternoon we met with a nutritionist to discuss changes to his diet. Most of the dietary recommendations we were already adhering to, but due to the large amount of sodium in Ben’s new medications, he is supposed to limit his sodium intake. We got a call saying they couldn’t place his catheter til Thursday morning so we decided to take the kids to do something fun Wednesday. After Benjamin went to bed I looked through his MRI scans and having seen enough of them to know what I was looking at I was anxious to hear what the doctor had to say about them.
Wednesday we spent the morning at a Blue Star children’s museum letting them play (low impact on Ben) and doing crafts and I ran errands in the afternoon, buying groceries and other essentials we needed.
His appointment to get the port put in was at 730, so Thursday was an early day for us. We drove to the clinic downtown and as soon as it was placed went back to his doctors clinic to begin treatment. We met with the doctors again to discuss the treatment regime and what the next two weeks would look like. The doctor told us what I had already expected, the tumor from 2 months ago was exponentially larger and there are smaller tumors throughout his brain as well. He sounded encouraged about the treatment and said that higher grade tumors typically respond quicker to treatment. They recommend staying on the treatment for 4-8 months following the tumor’s shrinking. We signed pages and pages of consent forms for the trail and then I learned how to attach and set up his pump. The finance office met with me and explained the astronomical costs for the medications that he would need to be on (in addition to the antineoplastons which we don’t pay for because they are a trial medication). Insurance typically does not cover these drugs at all, and because it is a trial, they do not cover any of the doctors visits associated with the treatment either.
Benjamin is now attached to a pump that he will carry with him at all times. Every four hours he will get an infusion of meds through the pump and once a day we will change the bag out. For the time being (until they are confident in my ability to do this alone) we will go into the clinic every day to switch the bags out. He will start oral meds next week after they get this medication regulated and up to a normal dose. For now he gets blood draws every other day to check his sodium and potassium levels. As long as they are normal, he will continue on the antineoplastons.
On Friday morning, I met with finance while Ben waited for his blood draw. I discussed my options for payment and tried to figure out how to make things work. I spent a lot of time on the phone calling our insurance company and going back and forth with the doctors office. We are hopeful that insurance will pay for the oral meds after this initial round. Then I went into the IV room and sat with Ben while he waited to get hooked back up to the pump. I had the opportunity to meet and talk to several other families who are going through the same thing as us. Adults and children alike. Almost all had tried conventional treatment and within a year or two (some less) the cancer had come back with a vengeance. All of them who had been there more than a week had stories about the positive changes that they had seen since starting the treatment. It was incredibly encouraging to talk to people who have been in the same place. Benjamin had been lethargic and a little out of sorts for the past few weeks so knowing that things could improve and quickly was incredibly encouraging to me. We left the clinic around lunchtime and grabbed something to eat on the way back to the condo. Ben’s head was hurting and he was incredibly nauseous as we walked to eat, but he made it back home with no incident. With the exception of the time he was up for dinner, he slept most of the day sleeping after we got back to the apartment.
Saturday and Sunday we went into the clinic early and changed out his pump bags. By Monday, he was ready to start his full dosage of antineoplastons. He was still getting nauseous and throwing up at least once a day, but since he had a few episodes like that prior to going on the medications, we did not think it was related. They went ahead and put him on dexamethasone (which he was on before) to help with swelling in his brain due to the fast growing tumors. Because of his weight and size, his antineoplaston dose is 2 bags a day. So starting Monday, I had to start prepping two bags (this takes 15-30 min each) and after his third dose of the day, I have to switch the bags out.
I learned to change the catheter tip out that connects to his pump (this is done every 2 days) and also how to change his bandages (this is done every three days). On Wednesday, the 3 oral meds we special ordered arrived and he started one of them that afternoon. He didn’t have an adverse response so we started the second medication Thursday, and the third on Friday. On Thursday, he also had a 2 hour infusion in the clinic of Avistan. This is a medication used with glioblastoma patients. Each infusion costs over $10k and because of his size he receives a very large dose of this as well. We are hoping to be able to go to the nearest military base to receive this when we get home so that we will not need to pay the complete amount out of pocket.
The nausea passed about halfway through the week and Benjamin even went a couple of days without taking a nap. He continued to be in good spirits when he was awake and seemed to be remembering things a little better. The staff at the clinic joke that we are like Ken and Barbie because we are always smiling… I think they have forgotten all my tears last week in regards to payment plans 🙂
Things continued to progress well so on Thursday I asked the doctors assistant what the chances were we would get released from the clinic in time to make it home to Ohio for Thanksgiving. She discussed with the doctor and he said that if the weekend went well he didn’t see any reason why we couldn’t be home by then. They gave us Saturday off from going into the clinic to see if we could handle doing everything necessary at home without having the nurses there to help! All went well, and we are hoping for a good report when we meet with the doctor on Monday morning!
We ask that you continue to pray for:
A journey with our family through multiple sclerosis and muscular dystrophy. As well as a look into our struggles and faith!
Being still for Caitlin Grace
The Joy of the Lord is our Strength
Finding Beauty in the Everyday.
Chasing Christ in the Chaos
Learning to Embrace the Storms of Life