The Waiting Game

Unfortunately, Elliott's pain is still present, but it has decreased a little bit. There is less frequent intense pain which is great. Keep praying that this pain continues to decrease as El gets new pain medicine and chemotherapy. 

Because of his pain, specifically Elliott's nerve pain, the doctors do not know if Elliott will be able to participate in the study. The gene that has been injected into Elliott's T-cells targets tumor cells but it also can affect nerve and brain cells. If the nerve cells are already damaged, thy do not want to damage them more.To let Elliott into the study, they are trying to decrease the tumor that is close to the nerve by chemotherapy. If the chemo doesn't work then they will try to do radiation on the area to reduce the pain and the tumor. We are praying that these treatments will allow Elliott to get the T-cells that might stop the tumors from growing. 

We won't know if we will do the cells until either chemo is done or when radiation is done. It seems that we have been playing this waiting game for every part of the study. So I suppose it shouldn't come as a surprise to us. 

Keep praying friends that

1. Elliott's pain would decrease so he could sit up, stand, and walk easily.

2. That Elliott would be able to participate in the clinical trial.

3. That we may be not anxious as we play this waiting game. The Lord has it all under control and all in His hands. 

Awful Pain

This week has probably been one of the hardest and longest weeks in my life. It has been a week of ever increasing pain for Elliott and increasing internal agony for me. 

Ever since we got back from Maryland, Elliott has had difficulty standing, walking, laying on his back, and sitting, because of the tumors and nerve pain he feels in his left leg and back. The only relief he seems to have is when he is on his stomach. Unfortunately no pain meds that we had at our house seemed to touch the pain he has been feeling. It is heart breaking to watch someone you love be in pain and not be able to do anything about it. 

By the time the pain was at its greatest it was Saturday, standing and sitting were almost impossible. Of course no oncologist or team member of ours is ever in on the weekends, so we had to settle with people giving us safe options for pain with prescriptions that we already had. These prescriptions were definitely not working. Poor Elliott, he was moaning and basically crying in pain and it seemed like no one could help us. How were we supposed to go to Maryland the next day? How was Elliott going to sit on a plane for an hour and take an hour long shuttle ride to NIH? These are all questions we were contemplating. The only thing we decided was this life saving or time giving treatment would be worth the painful trip, so we were going to Maryland somehow.

Then came in the Orr's!!! The superheros! They devised a plan that we would drive to Maryland. Elliott could lay on his stomach on an air mattress in the back of the van so he would be at least comfortable. Right before we left for Maryland, El had a bad pain episode and he didn't know if he could make it. We pleaded with The Lord to make this pain tolerable, and with his mercy, grace, and faithfulness He did. Sure there was a little flat tire hiccup on the way, but Praise God, Elliott did not need to leave the car to have it fixed. Instead of 10 hours we made it to Maryland in 13, but we were here. 

We were admitted into the hospital as soon as we got here, but of course all the people that can actually perscribe good things are never here when you need them. Elliott was sore from being in the car for 13 hours, and didn't get any relief until we slept in the children's inn together that night. 

Yesterday we were informed that I could stay in the inpatient room that Elliott is in, and that we are still eligible for the study. The downside was we had scans, scans where El would have to lay on his back for an hour. Seemly an impossible achievement for the amount of pain Elliott was in. The Lord was with him then too because somehow his legs that shivered with pain lay still and flat for the scans. It wasn't without pain, but it happened not of Elliott's own doing. Praise God! 

Before the scans that morning we talked to the pain specialist, but they never came back to talk about a solution to this pain problem. Elliott has been begging, pleading, and needing something stronger for pain all day and has not gotten it til right now at 1:30 am on Tuesday. His pain seems to have temporarily stabilized, and he seems to be asleep. I pray that it stays this way until morning. 

It has been such a long day filled with constant prayer, pain, tears, anxiety, and helplessness. Through the pain and the unpleasantness of cancer, we are praising God for everything He has done to get us into this trial. Please continue to pray that we find a solution to this debilitating pain so that Elliott will have some relief tomorrow.  Please pray that because of this week and this pain we never forget the importance of prayer. 

Traveling to Maryland

On Wednesday, Elliott and I headed east to qualify for a clinical trial at the National Institute of Health (NIH) in Bethesda, Maryland. Our flight to Maryland was pretty short and uneventful. From the airport in Baltimore, we took a shuttle to the NIH, and we checked into the Children's Inn where we stayed.

The Children's Inn is pretty cool. The rooms are basically like hotel room, and it has fun rooms for kids and teens. It kind of reminds me of living in a dorm except there are no crazy college kids. It has actually been pretty quiet, and the only time we see other people is at events put on by the Children's Inn like family dinner. Elliott and I think that most families who stay in the Children's Inn probably spend more time in the hospital then we do.

Creatinine:

We spent the first day getting a lot of scans and multiple tests. At the end of the day, we were really tired and wanted to get back to our room and rest, but it was not to be. We met with one of the doctors who told us that Elliott's creatinine level which is an indicator of kidney function were too high and wouldn't qualify him for the clinical trial. So, she suggested that we be admitted into the hospital to get fluids to see if we could lower his levels. His creatinine was 1.7 and it needed to be at or below 1.5 to qualify him for the study. Elliott spent the night getting fluids, and in the morning, Elliott's levels were 1.62. Yet again the doctor reccomended another day and/or night of fluids if El's levels did not come down. I have to say that waiting for this level to come down was one of most stressful things of this trip. I mean the only thing that was holding us back was .12.... .12!!!!! Ugh! I feel like the farther we go on this journey the more I realize how much control I want to have and how much God is actually in control. 

The nurse came in to redraw El's blood at 6, and Elliott and I were pretty much sure that he would have to stay the night in the hospital again. But The Lord answered our prayers and an hour later we got the news that El's creatinine was 1.49!!!! .01 to spare!!! How Great and Awesome is He!! I literally leapt for joy when the nurse told us. Most of my weight had lifted!

So instead of spending another night in the hospital, El got to come back to the Children's Inn with me. 

Weekend:

Saturday was mostly restful. At night we decided to take the bus to Chic-Fil-A. Except trying to navigate the buses in the dark left us kind of lost and too far from Chic-Fil-A. Being lost in DC area is no fun.

On Sunday, we decided on the metro as the main source of transportation. We used the metro to get to church which was pretty easy. We will probably still church hop around though. We also used the metro to get to the DC United game except this time we used a wheel chair. The mixture of sketchy elevators, escalators, uneven sidewalks, and unthoughtful people made traveling pretty hard, but we made it through. The game was pretty fun, and I am glad that we got to go. 

Apheresis: 

Today we were did the first step of the clinical trial which includes taking out Elliott's white blood cells. The first step was putting in a temporary neck catheter. It was pretty short procedure. Then Elliott got hooked up to the apheresis machine through his neck catheter that he just got. This large machine, pumped out Elliott's blood and separated the red and white blood cells, and the red cells got put back into Els body. It was a long process and took about 4 hours. 

Unfortunately, the day ended up with Elliott being in the hospital for a transfusion. I hate that he has to spend so many nights there :( but it is necessary. 

We are going home tomorrow!!! Yay!!! 

Things to be praying for:

1. That Elliott and I have a safe trip back to Michigan. 

2. That Elliott will not have too much pain on the way home and while we are at home.

3. That this clinical study will be helpful to Elliott's cancer, and that his side effects will be minimal.