Some FUN

Update: 

We are now outpatient!!! Yay! We are staying at the Children's Inn. During the week, we have to go back to the hospital for radiation which lasts a couple hours, but we do not have to stay there. Such an answer to prayer! 

But anyway, besides all the medical stuff we have had some fun in Bethesda too.

El striking a pose in his new shirt.

Elliott's fun acupuncture experience.

One of the first times Elliott layed on his back. 

Showing off his radiation markings. 

Cuddling with both red and white blood cells. 

We are currently doing well, in good spirits, and excited for the recent progress. Please continue praying, though, as there are still a lot of "what ifs" down the road!

General Update

In the past two days Elliott and I have received a massive amount of intense information. While there are many questions still to be had, we would like to present some of the information that we found out.

A few nights ago Elliott got an MRI of his spine to make sure he was all set  for radiation. The results were unexpected. The tumor in his pelvis is rather large which we knew, but what we didn't know is this tumor is pressing on both the femoral and sciatic nerves, as well as his rectum and bladder. The most concerning part is, they also found two spots on the spine impinging the spinal cord. Without radiation or some other form of treatment there is nothing stopping the tumor from affecting the spinal cord in a more serious manner.

So after we found out about the spine tumors, our 10 day radiation plan, turned into a 15 day radiation plan that we started this afternoon. They extended it so they can get the pelvis tumor as well as the spine tumors. The purpose of this radiation would be for pain relief in pelvis, leg, and rectum and decrease potential adverse effects related to the spinal cord.

As with any form of treatment, radiation presents its own list of potential side effects. But we will choose not to worry about them unless they come to be.

On a positive note, Elliott's pain seems to be under control most of the time. He still seems to still have trouble standing and walking but can sleep pain free. Also we found a couple from Michigan who is willing to house anyone who comes to see us. They are about five minutes away, and are members at a near by church. 

So you can pray for these things...
1. That this radiation would work in relieving Elliott's nerve pain and killing some tumor.
2.That this radiation would not cause further damage to Elliott's pelvis, and after he will be able to walk and get around easily.
3. That the Lord continues to fill us with strength, patience, and perseverance as this road does not seem easy and the suffering seems great.
4. That Elliott's side effects from radiation will be nonexistent or minimal.
5. That after all of this Elliott will be able to get his T-Cells, and they will be effective in also fighting his tumors.

Thank you so very much for your continued prayers, support, and love!
Love,
The Orrs

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. 

Back Home

For the whole month of June, El, Nema, and I lived at the Cogan's house in East Lansing while they were at summer project. It was such a blessing hanging out with our friends, going to bible study, attending URC, volunteering at Shared Pregs, and just being in a place that we loved. We are now back in North Branch and have been enjoying the fourth of July activities. 

I loved living in East Lansing again. It was the town that Elliott and I would have lived in if his cancer had not reoccurred. In my mind, I thought living in Lansing might make life easier. I could hang out with friends when I was having a bad day, and Elliott and I could really be responsible for ourselves. Lansing was easier in some ways. I would go cry in the arms of friends, instead of waiting weeks and weeks to see them. The only bad thing was once I left to go see people, Elliott would be alone. Being alone is hard especially if you don't feel good to begin with. I didn't want Elliott to feel lonely or bad, so I didn't hang out with people a much as I thought I would. Back in North Branch, when I leave to go see friends El is alone but his parents live right across the street, so he is never really alone. 

We also started to miss all the physical support that we got at home. If I did not not want to make dinner, I could always go to my in laws, and they would feed us. In Lansing though, if I didn't want to make dinner I still had to go out somewhere and pick it up. I really missed all the support we got from family.  

I guess no matter where you live there is never just flowers and butterflies. A place does not just make your problems go away, and maybe I had this romantic notion that living in Lansing would make the side effects or problems of cancer disappear. Well it doesn't. There is no perfect place to live on this earth. The only perfect place with no tears and hurt is heaven, and this makes me yearn for heaven even more. 

But as of now we are back in our house. I forgot how much I love the lake in the summer time. We have been home a week and it has been so relaxing and fun. Last summer, I did not swim at all in the lake, and this summer I have swam four times. Oh, I do love North Branch! You just need to be reminded by getting away every once and a while. 

Here's what we did....

Oh my goodness!!! This has taken me months to finish!!! 

So here is what we did on our break!

At the end of March, Elliott and I went on a 10 day honeymoon to Orlando. While we were there, we went to Disney World and Universal studios. We had so much FUN, and it was great to get away for a while. Thank you to everyone who helped with our honeymoon fund! We are so blessed!

Elliott and I on the plane. Elliott's first plane ride with his wife ;)

This was the first time we saw the sun in five months...not even exaggerating. 

Towel art in our room.

We stayed right at a Disney Resort, so we could be shuttled right to the parks. 

We had hopper passes at Disney which were really nice. We could go to the parks early, come back and take a nap in the afternoon, and go to a different park for dinner. 

El and I at Magic Kingdom.

(I tried to get Elliott to buy the matching bride and groom ears, but it didn't happen. So I just got bride ears) 

Then I made him do a wedding photo shoot with me. 

  

Epcot was probably my favorite spot. There was plenty of things to do and the flowers there were so pretty. 

French montage.

Elliott's favorite part was the food, and riding expedition Everest 6 times!!

After we stayed at Disney for a week, we went to Universal Studios for 3 days. We stayed at a brand new resort there and the rooms were super awesome! 

It basically had two rooms. A living room and then a bedroom. 

...and Harry Potter World!

The weekend after we got back, Elliott went to Louisville for a Together for the Gospel conference. He had a lot of fun hanging out with college buddies, and he learned a lot from the speakers there. It was weird not having him home, but I did massive spring cleaning while he was gone. 

And to finish out the traveling section of our vacation, we went Minnesota to see friends from project that we got to know two summers ago. I missed them so very much. They are just so encouraging and God glorifying, and I wished they/we lived closer. 

 After we got back from all the traveling, we started coaching JV soccer. Because of all the cancellations due to weather, a lot of weeks we had three games. It took a lot more time then I thought it would, but it was really fun. And we are thankful for the opportunity to coach. 

That probably brings you up too this treatment. 

We are thankful for the "normal" phases and we are also thankful for the "not normal" phases. In all seasons we are learning about God's faithfulness and mercy. I am so glad we got to have this time off! It was such a joy! 

Vacation!!

Hello friends and family! 

Here is an update on Elliott's health. Today we went to Ann Arbor for El's appointment with his oncologist before his monthly chemotherapy. The chemotherapy has been doing its job in stopping the cancer from growing which we are so thankful for! There have been no new growths from his tumors in his lungs and hips! Praise God! But the chemotherapy they are using is starting to take a toll on Elliott's body. Not a significant amount, but you can see it in his kidney function and blood counts. 

So Elliott's oncologist is giving us a two month break! I am very excited about because it means we can be a little normal again and go on trips and things. If the cancer continues not to grow then we could be on break longer. 

The downside is that during this break there is nothing medically stopping this tumor from spreading. But, I know that God has the power to heal or keep the cancer from growing.

 Honestly, I am a little bit nervous about the break because we are not doing active medical things to stop the cancer. I am also thankful for the break though because that means Elliott will feel better, and he hasn't felt really great since before we got married. We are looking forward to taking some trips in the next couple months. 

We are so thankful that God has answered our prayers and has kept the osteosarcoma at bay. How mighty is our God who is always there to shelter us in our darkest moments and hear our pleas. He is our foundation and our rock. I know this fight might not be over, but I am just so thankful for the faithfulness of God.

So keep praying for us. Firstly, continue to pray that people come to know the Lord through this experience and for God's will to be done. Secondly, pray that the cancer stays at bay, and that Elliott is not in pain on our "vacation". Lastly, pray for wisdom as Elliott and I try to figure out what to do in our free time. 

Elliott's health update

So yesterday was frustrating. Elliott had a fever, and it was fairly high so we were advised to go to the nearest ER. We first went to the Marlette ER, but they wanted him to transfer because they did not have platelets on site. We went to Lapeer, and after talk about being admitted there, the on-call oncologist was not answering their phone, so we got transferred again to Ann Arbor. Where El sat in the emergency room for four hours waiting to get a room upstairs. Hospitals are frustrating, but they are also helpful I suppose. 

Usually we would be out soon, but we have come to find out that Elliott has a bacterial infection in his intestines. Please pray that we don't have to spend all our off weeks in the hospital, and that this infection will respond well to antibiotics. Thanks for your prayers!!