Our 9 Year Anniversary

On October 9, 2006, I met Elliott at his locker before the beginning of class. We had discussed that after homecoming we would "date," but we really didn't discuss what "dating" actually meant. So when I met Elliott at his locker, he greeted me with a,"....So now what do we do?" And I answered, "We should hold hands." He grabbed my hand, and from that moment on we were together.

We kept October 9 as our official anniversary, and we celebrated it every year.  On this day, we would get all excited about our future together, and marvel at how much we meant to one another. Today, I have loved him for 9 years. As you all know, this is my first anniversary without him. It is such a weird feeling that I don't get to celebrate with him. Instead I just feel an awful hole in my heart. I feel like I am deaf because my ears can't hear his voice. It feels like I have gone blind because I don't get to see him laugh or smile. There is a certain type of numbness that is with me because I don't get to hold his hand today.

My heart hurts. My eyes leak. My life is forever changed, and I am not sure I see the good in it. I miss him in a new way every single day. It is hard to do every normal human thing. I feel so disabled and ripped apart.

I miss my friend, my best friend, who knew me better than I knew myself. He listened to me rant, sing, cry, and laugh. Every time I would cry, he would hold me. Maybe most times he wouldn't say anything, but just his being there, just his touch made me feel better. I feel like a baby without her blanket. My physical comforter is gone. Instead I am just filled with anxiety and dread. How will I face another day? I miss his mind. His beautiful thoughts that could make any person stop and examine their life. I miss his ridiculous laugh especially if is was at one of my jokes. I miss hearing that he loves me, and that he is proud of me. I want to hear his voice so badly.

Sorry, it feels like I am being negative. But mostly, I just feel pain, and it's awful. There is no reason to sugar coat it.

But...as I write this, I am remembering some verses in Lamentations. In this book, the city of Jerusalem has been destroyed, its people are homeless and starving, it is really depressing and the pain almost seems unbearable, but then there are these verses:

"Yet I call this to mind, 

and therefore I have hope:

Because of the Lord’s faithful love

we do not perish,

for His mercies never end.

They are new every morning;

great is Your faithfulness!

I say: The Lord is my portion,

therefore I will put my hope in Him."

Lamentations 3:21-24

There is hope. Even when it is hard to see and life is full of pain. There is hope in the Lord's faithful love for his people through Jesus. It may seem like too simple of conclusion, but for today it gives me hope. 

An Update on Me

I will start off by saying that I am going to try to continue this blog. I know that Elliott would want me too. He would say, "You have a unique point of view, and people should hear it." I suppose he is right, and maybe this blog can help someone else. I was always grateful for how Elliott opened up his life to others, so I want to be open and honest while still striving to see the Gospel. It may not always be pretty or eloquent, but it is real.

How am I doing?

I kind of hate this question (but don't be afraid to ask me). Most days I am doing alright. I can find joy in everyday things. I can laugh and smile. I can hang out with people, and it feels like I can be fully engaged in conversations. I can go places and have fun. I am so thankful that I have these good days, sometimes even good weeks.

Other days my heart breaks. And on those days I feel like everything reminds me of what I don't have. I don't have my confidant, my husband, my "patient", my love, my nerd, my thinker, my proof reader, my normalcy and most importantly my best friend. The bond we had as husband and wife, the oneness we shared, has been broken by death. So now the oneness of marriage is broken and I have to be one on my own again. Any way you slice it, I am broken in half, in three quarters, or in two thirds. I don't feel whole. Without him, I feel like I am missing. Not only am I missing, but I just miss my best friend. I miss his laugh and his puns. I miss his compassionate heart and his love for people. I miss his mind and his knowledge. I miss how he would hold me when I was crying and wipe away my tears. I miss his advice, his counsel, and his secret keeping. I miss being a family with him, and I miss picturing having a family with him. I just miss him. He is so much more than just words on a blog post, he is so much more than a picture, for a time he was all that I was. And it hurts that he is gone. Death hurts. This is my worst nightmare come true, and the pain is unbearable at points. 

And yet, even with all this awfulness, I wouldn't wish him back. Not only because his suffering on this earth was so very great, but because he is in a place where he is not touched by sin and death. In heaven, Elliott is not only free from these things, but he is fully reconciled with God through the righteousness of Jesus. He is standing in the full glory, sovereignty, and majesty of God. He will not struggle with sin again, he will not fight cancer again, and he will have true, eternal, and unending joy. Elliott's job of glorifying the Lord here on earth is done, and he fought the good fight.

What am I doing?

Everyone handles grief differently, some people go back to work the week after their loved one has passed and some need to take some time to process their loss, and both are fine. Everyone experiences grief differently and there is no exact formula or method to deal with it.

So, Christina, what are you doing? Well, for the past three months I have been trying to take it easy and not make decisions too fast. I live at my in-laws house which is right across the street from the house Elliott and I lived in. At the Orr's, there is always some one home to hang out with and have conversations with. I have spent a lot of mornings crying and talking with Cathy, and I have spent a lot of nights dancing around the kitchen with Ansley. I am never alone. It is really great that they opened up their home and family to me, and I am so thankful. I have been trying to find a balance between praying, reading, and processing alone and with others. As an extrovert, it is hard for me to sit all week in the house, but it also hard for me to be in a social setting every single day. It's a weird balancing act. I am taking a couple days a week to relax, journal, and read, but I am helping my dad coach soccer. I also try to see my wonderful friends in Lansing as often as I can. My life right now seems to be a juggling act to find what is helpful to me during this time.

 I have also taken a couple trips. One to New York City with my sister on her spring break, and it was so much fun. I had always wanted to go! The next trip was to Disney World in Florida with the Orr's. It was an awesome trip to "the happiest place on earth." It was a good break from the Michigan weather, and it was also a lot of fun. Recently, I traveled to Minnesota for a dear friend's wedding. It has actually been quite a busy couple of months. 

Eventually, my plans are to end up back in Lansing. It is a place that Elliott and I both grew into adults, and it already feels like home. When I am ready, I will be living at a friend's house, and that is about all the permanent plans I have.

Thank you

I want to say thank you to everyone who made us food, sent us a card, gave us a hug, or just made us feel loved during this hard time. Our family has felt incredible blessed by all the acts of kindness that have come from family, friends, and complete strangers. We greatly appreciate it, and I know that Elliott would appreciate all the love and care that has been given to his family.

But I guess...

That is the update on me. Hopefully, I will continue to write one or two times a month. That is my goal. Please continue to keep the Orr family and me in your prayers as we head into the first summer without our son, brother, husband, and friend.

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.