Hi everyone! I have an update on Stephen for you today. He is in need of your prayers again. Things had been going so well! The radiation seemed to be working great and he even got to go back home to Albuquerque for a while. Make A Wish granted he and his family on a trip to Disney World (it was his wish to go to the Jedi training and watch Darth Maul put on his makeup!) He went through the whole Disney World trip just fine until the last day. He was in a lot of pain, and it sounded like sciatic nerve pain. But why would a 7 year old have sciatic nerve pain??? They found that the pain could be from swelling in his spinal column from radiation, or it could be a new tumor growing in his spine. Since then, his pain is getting harder and harder to manage and it has been pretty rough. They are still waiting on answers. They are still in Albuquerque and debating on how to get back to St. Jude since he is in too much pain to travel and there is no way he could survive an 8 hour flight of sitting up. They are pretty terrified. If it's pain from swelling and irritation they will prepare to start chemo. If it is another tumor growing in his spinal column that will be a different story.
Here is Brent's journal entry from today. I'm posting the whole thing so you can get the full picture of what's going on. It's a story I can't paraphrase. I get goosebumps when I read it...it's amazing to see how God works in people's lives. He is very involved in this family's lives:
Where to start?
Stephen's Super bowl Sunday had it's extreme ups and downs. We were trying to control his pain with the Dilaudid every 4 hours. The nerve pain, Gabapentin, has done a number on his laid back, easy-going demeanor. He is frequently moody and even outright angry with it in his system. Still, his good nature shines through from time to time when he's not hurting.
We spent all of Sunday morning chasing his pain after another long night of the same. We finally got him pain free and down for a nap before noon. We had hopes that we could all go to church as a family at 12:30pm, but it could not happen and Amber stayed home with him.
Later in the day, about 5:30pm, his elementary school teacher came to see him. He had been looking very forward to it, and during her visit it was almost like nothing in the world was wrong. Although he still walked with a limp and had his droopy eyes, he had a great time telling her all about his trip to Disney World and how he saw (and became) Darth Maul. It really seemed like a miracle. He was himself again.
After the visit, we had also planned to go to his cousins’ house to see most of Amber's family for somewhat of a farewell like with my family the day before. He had some pain on the drive over, but lay down and played with his cousins for a couple hours. He seemed to hold up okay if he was laying down.
The 15 minute drive back home was horrific. Stephen screamed at the top of his lungs almost the whole way home and was frequently crying, "Are we almost there yet?"
It was then that we realized there was no way this kid could make an 8 hour trip (flight, layover, flight) to Memphis having to sit all the way.
Once home Sunday night, we continued fighting the pain. We had also noticed that his stomach was distended and was hurting him. He hadn't had a bowel movement since Monday or Tuesday. It wasn't for lack of trying either. We had already given him a couple doses of Miralax throughout the week and had tried a full kid's dose of Milk of Magnesia the night before. He was in so much pain with that on top of his sciatic that we had to do something. We gave him more Miralax, Milk of Magnesia and tried a suppository before having any success late in the night. (Sorry for the descriptions here)
He felt so much better after that and slept well, minus a few trips to the bathroom during the night. This morning he felt well for a while.
By this time, I had already cancelled my plans for driving to Memphis over Monday and Tuesday. It was just too risky for me to get that far ahead if something were to happen here. Afte the good morning we thought, maybe, just maybe he would be able to get on a plane after all. If so, I would drop them off at the airport Tuesday morning and drive the whole way there with a backup plan to stop and sleep somewhere if I needed to. (We've really felt like we need a car out there - hence the drive and not flying with them)
But then Stephen went downhill again. We were confused and unsure of any of our plans once again.
At this point a desperate plan was hatched. Maybe we could drive him to Memphis. It would be a longer trip for him, but we could make him a bed in the back seat and he could lie down and at least be more comfortable. We would control the pain as best we could and be the next day. Not ideal, but it could work.
We decided to run it past our doctors at St. Jude and have them cancel the flight that St. Jude was providing. They told us they could not endorse the drive and recommended we take him into the local hospital. We hung up somewhat frustrated, but recognizing they were just protecting themselves from liability.
We had already considered going to our local hospital several times during the last few days, but it always felt like it was an unnecessary in-between. UNM-H was reluctant to do an MRI because they felt they couldn't compare it to previous scans done by St Jude. It would require us to catch them up with all that had happened. If surgery or other treatments were necessary, we would want to be at St. Jude, not here. St. Jude had even told us that they would want Stephen back even if we went to UNM-H first. It’s just always seemed like if St. Jude was the last stop, why not get there first if we could.
After a brief discussion and some reasoning, we decided we would make the drive with Stephen against our doctor’s recommendations. After all, they were only protecting themselves – and that was expected and even acceptable. But we could make our own decisions for our child based on what we thought was good. It made sense that if he could exist at home, then why not laying in a car and hopefully sleep most of the way. We would even up his dose of Dilaudid one more step to the maximum safe level for the trip. Now that his bowel problems were over, it could happen. It made sense.
We began to pack quickly. Then I stopped. Everything felt so rushed. There was still some uncertainty. Right then I decided this was too big a decision to make on my own and I went out and sat in my car to get away from the hustle of packing. I don't know why I hadn't done it before then. I prayed. I asked for some kind of answer. All I wanted was a confirmation of some kind that what we had chosen would work.
What I got was just the opposite. It came to me very clearly – unmistakable. We were not supposed to drive to Memphis. There was danger in it. I could feel it. Instead, we were to take him into UNM-H immediately. As I pondered the new direction my chest filled with warmth. It was just like how many people have described the Spirit of the Lord to feel. I've felt that many times before and I've never been lead the wrong way when it happens.
I did want to involve Amber, so I brought her out to the car and we prayed together. When we had finished, she was still unsure and cloudy. I told her what I felt. She said it made her feel “relieved”. There we had it. Our answer. Our plans had changed once again in the course of a few minutes. This time, however, with divine guidance. How wonderful is that?!
Amber’s parents came over to care for the kids who were arriving home and we left with Stephen to the ER. We had been in communication with our local neurosurgeon’s nurse practitioner and she had set everything up. She felt if we checked in through the ER, we could get an MRI tonight. It turned out that once there, they told us that they didn’t have an anesthesiologist available to sedate Stephen for the MRI. We will have to wait until tomorrow anyway.
Stephen is now on the pediatric floor. He is not in good spirits. He’s still in pain and VERY grumpy. Amber is there with him and I have come home to stay the night with the other kids and get them off to school in the morning.
But we now know why this was to be our path.
My faith has absolutely been confirmed. Soon after we got into the ER, Stephen was required to give a urine sample. He said he had to go, but just couldn’t. We didn’t collect even one drop. That was okay. We would just try later.
They proceeded to give him a full IV bag as we waited to go upstairs into a room. We waited a long time. That IV bag was half emptied when he began to really have to pee. He tried and he tried, but nothing would flow. They finally had to insert a catheter to his great dismay. He screamed and that Gabapentin rage came out, but they had to do it. It will likely have to happen again if he does not get control back.
I can’t imagine being out on the road tonight somewhere in Texas or Oklahoma – far away from home… and St. Jude with that complication showing up. It would’ve been disastrous and we would have been stuck at an ER somewhere in-between. We would not have made it to St. Jude. We would not be near family and support in Albuquerque.
By the way, that, as well as the constipation are just more symptoms pointing towards a compression of his spinal cord caused by tumor growth. We are very nervous about what the MRI will show tomorrow, if anything. But at least we listened to our promptings and are where we are supposed to be… for now.
Please continue to keep them in your prayers. I'll keep you updated as soon as they find out whether it is just swelling or a new tumor. *fingers crossed* for good news....