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Day 246

It never ceases to amaze me how aptly named our Addy Joy was.  It seemed that no matter what happened she could always find the joy, or bring the joy to most any situation.  Yes, she had her moments when she cried, or complained, or hurt, but almost without fail she was laughing a few minutes later, many times thanks to her brother being a goofball in order to help her feel better.

Seeing her so full of joy in the worst circumstances always brought some joy to my life.  I still don’t know how she did it.  The amount of joy that she lived with is something I strive for.  However, I rarely succeed at it in the same way she did.  There are days when finding the joy in the little things is easier than others.  Other days it seems it’s nearly impossible to find any joy at all.  These are the two extremes I usually live somewhere in between.  Some days I wander closer to one and extreme than the other.  The next week can sometimes lead to the other extreme.  But for the most part I’m usually somewhere in the middle.  I tend to find the most joy when I’m with friends and family, or when thinking about spending time with Addy and those who have gone before when I finally reach my future home someday.

For months now we’ve been waiting.  Waiting for results.  Waiting on an important video conference.  Waiting to have answers to some of our questions.  On Friday our waiting ended.  Over the course of a few months the tumor samples that Addy donated to science were evaluated all the way down to the chromosomal level.  A machine scanned her DNA and the information that makes up her DNA numerous times and then those scans were compiled by a super computer.  We always knew our girl was unique and special and her research results confirm what we already knew.

The researchers at TGen are excited by what they found, and at the same time not exactly sure what to do with it.  We discovered that Addy had a total of seven mutations to her cancerous DNA.  Something that is interesting is that her DIPG tumor from her brain stem had seven mutations while the tumor that moved into her spinal column only had six mutations, but they were all the same mutations with the exception of the one extra.  One of the mutations she had is commonly seen in DIPG.  It’s known as an H3 mutation and these generally come in two different genes.  Addy had the less common of the two gene mutations and it is always found in conjunction with a TP53 gene mutation.  Always, until Addy that is.  Addy is the first child that these researchers have seen where the H3 mutation is present without the TP53 mutation.  That’s called being unique. 

Have I mentioned how unique our Addy was?  Try this on for size.  One of the mutations the doctors found in her tumor has never, to their knowledge, been seen in DIPG before.  The particular gene that was mutated, the CDKN2C gene, has cousin genes, CDKN2A/B, that are regularly found to be mutated in DIPG, but to their knowledge Addy is the first to have this gene be different.  What’s interesting is that they probably would not have found this mutation if it had not been for her spinal tumor.  Because they had the sample from her spine in addition to the DIPG tumor they widened their scan parameters to include over 20,000 different genes.  Because they widened their search parameters they found this particular mutation.  That gene isn’t normally scanned because it’s never been seen to be different before.  Because of our girl they will probably include that gene in their scans from now on.  Just another mark our girl has left on this world; not bad for a four year old. 

So what does this all mean?  It means the researchers now have more information about DIPG and what it can do.  It means that they now have another gene to watch out for.  It means that DIPG doesn’t always behave like they thought it did.  It means they might one day be able to turn this information into one of the many many keys needed to unlock a cure for DIPG.  Our girl has added to their knowledge and information.  She’s played her part.  Now we must play ours by fighting for a cure.

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Day 239

I’m really not a fan of wind chimes.  I think they’re loud and annoying most of the time, and especially on windy days.  The discordant (in my mind) music they play just plain gets on my nerves.  So when a group of Chandra’s former team mates got us some wind chimes in honor of Addy I was slightly hesitant.  Because we were living in an apartment at the time I didn’t have to worry about it for a while.  However, when we moved into our house in October and started unpacking those wind chimes were in one of the first boxes we came to.  So what do you do with wind chimes you’ve received in your daughter’s honor when you’re just not a fan of wind chimes? That’s right; you hang up the wind chimes.  

I’m so glad we hung those wind chimes.  They’re beautiful.  Every time they start chiming it’s like Addy has a hand on them.  Sometimes we’ll be talking about Addy and the chimes will pick up as if she’s letting us know that she agrees completely with what we’re saying about her.  I’m so glad we decided to go ahead and put up those wind chimes.  Addy would have loved them so I guess I’ll just have to love them for her in her absence.

This past weekend I got to go duck hunting again.  I could only make it for Friday and Saturday this time so that meant I had to drive myself since my friend went down for Thursday’s hunt as well.  I left Thursday after work so that I wouldn’t have to get up at 2:00am to make the drive past Little Rock.  A friend had a hotel room in Little Rock for the night and let me stay on his couch so I could keep my costs down.  

On my drive I drove past three important hospitals in Addy’s life.  The first was Arkansas Children’s Hospital NorthWest.  This was the last hospital Addy went to while she was alive.  It was during her last week here and Chandra took her to the ER at 2:00am because her pain had become too much for at home pain relievers to handle.  The next hospital I passed was important because it was the first hospital Addy was every in.  She was born at Willow Creek Women’s Hospital on Monday, April 28th around 5:30pm.  That was where her journey began.  I drove past the final hospital early in the morning as I left Little Rock.  Arkansas Children’s Hospital in Little Rock was the final hospital Addy was ever in… sort of.  Addy’s spirit was already in heaven the final time her earth shell entered this hospital.  Her body was there for an important task.  It had one last gift to give before being laid to rest.  A mere day after she passed away the doctors removed the tumor from her brain stem as well as the tumor from her spine to be donated to TGen in Arizona for medical research.

Driving past each of these hospitals brought to mind so many memories.  Some of those memories are sweet and I’d give anything to live them again.  Other memories were extremely difficult and cause a few tears while I drove and I wouldn’t wish similar memories on my worst enemies.  However, in the end they are all memories of my little girl and I’m grateful each and every memory I have of her.  I cannot wait until we’re reunited in heaven so we can start making some new memories together again.

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Day 232

Addy loved playing in her little kitchen with Jackson. The two of them would spend ours whipping up different little dishes for Chandra and I to try. They would use their plethora of different types of food to create multi-course meals that usually contained some sort of fruit, vegetable, meat, and dessert. Addy was a bit of a picky eater, what four year-old isn’t though, so it was always interesting to see what creations she would bring out for you to try. Sometimes her creations were creatively put together and well plated. Other times it was a hotdog and french fries which was one of her favorite meals.

A few weeks ago we made a big push to get the majority of our moving boxes out of the garage and unpacked into their new places in our house. Two of those boxes contained a lot of Addy’s toys as well as her play food. To be honest, we didn’t do much with those boxes. We had no desire to disturb their contents so the boxes just went up the stairs to Addy’s room. However, those boxes have now been thoroughly gone through and reorganized with some of their contents getting put back into toy circulation around our house. Neither Chandra, nor I did this. Jackson took it upon himself to get these toys out and put them in their proper places. His toys from the boxes went into his room, and the play food all went into the play kitchen where it belongs. He has even made us a couple of “meals” and “snacks” over the last few days. It’s brought back a lot of good memories of eating the meals that he and Addy so meticulously made for us while she was here.

The past few months have been hard on the DIPG community here in the USA as well as internationally. There have been a lot of new children diagnosed lately, a lot that have gone into progression, and a lot that have been lost. My Facebook news feed seems to be an almost ever revolving door of children who are fighting this monster of a disease. Without fail when a child passes away people start to refer to them as angels. I know these folks mean well and are trying to express how perfect these children are now that they no longer have to struggle against DIPG, but this trend has never really sat well with me for some reason. I’m pretty sure these people aren’t trying to say that these children are now actually angels flying around heaven strumming their harps. Addy would be the first to tell you “that wouldn’t be my favorite”.

I think some of my unease with this trend probably comes from my theological training. As a Christian I don’t see an Angel as being the standard toward which we strive in this life. We strive toward becoming like Christ. The Bible teaches that in heaven we will be given a new, perfect body and we will finally have our pain, sorrow, and sin completely removed from our lives. I honestly cannot wait to get to heaven to see Jesus and Addy playing and having a good time in her new, perfect body that no longer has the limitations she dealt with while she was here. What I don’t expect to see is Addy fluttering around on wings, sitting on a cloud, or strumming a harp. She’ll be so much more than an angel could ever hope to be; she’ll be a child of God. Some days I’m jealous that she’s heard the Lord tell her “well done” and I wasn’t there to get to hear it. I hope when it’s my time to go home that she’ll be there watching as I get to hear those words that she got to hear nearly seven months ago now.

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Day 225

Time keeps marching on whether I want it to or not. Every day is another day that I have to count where I haven’t held my little girl. However, it also brings me closer by the day to meeting my son for the first time. Mixed emotions abound. We’ve been working to get the nursery set up over the last few weeks. That means the baby swing, bassinet, and crib have all been set up. The crib is new. We just couldn’t stand to bring Addy and Jackson’s crib back into service. However, the swing is the same. Same songs that Addy listened to as a baby. Same safari animals that she watched circle above her head. Hearing those songs play again brought back a lot of memories. Good memories of our kiddos when they were much smaller.

Along with working on the nursery we’ve also been slowly working to get everything unpacked from the mountain of boxes sitting in our garage. Some of those boxes are Addy’s. They contain a mountain of her toys, as well as other treasured items such as souvenirs from Disney World and other such things. Most of her boxes simply got moved up to her room for now. They’ll get unpacked at a later date I guess when we can better handle it emotionally. We did find a number of items that she had moused away. She always had her treasures that she would hide away in little places. Most of the time her treasures were something of her brother’s that she would zip up in one of her purses or something similar. We found a small zippered wallet that she was given by Give Kids the World while we were at Disney. She had squirreled away some of her brother’s lincoln logs in the wallet. It brought a smile to our faces when we found it. The lincoln logs stayed where they were despite Jackson’s slight annoyance at losing a few of his toys.

It’s nice when Addy shows up in the little things of everyday life. It might bring some tears to our eyes at times, but those tears come with smiles. Addy was always good at bringing smiles to those around her. It’s amazing to me that she is still bringing smiles to faces even when she’s no longer here. It’s just one more thing that shows just how special our little girl really was, and still is to so many people.

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Day 211

After six and a half months Addy finally has a head stone. They finally got it placed late last week. What a lousy Christ gift for a four year old little girl. Once again this head stone came with mixed emotions. I’m glad and grateful that she finally has it, yet conflicted over it because we shouldn’t have ever needed it in the first place. I’m glad that the company did such a good job on it and that it’s so pretty, but sad that we had to order it or even think about it in the first place. 

Addy loved Christmas. Just like every other child I suppose. She loved all the Christmas decorations; especially the pink and purple glittery decorations that are sold a places like Hobby Lobby. We decided that we couldn’t let a head stone be the only thing we got her for Christmas so we went and got her some of the decorations that she liked so much. She always asked if we could buy her some of those decorations for the house, but we never did. Now we have; only too late to make her happy. There are so many little things that she likes and wanted that would have brought more joy to her life that we never got for her for one reason or another. I guess we always hoped and thought that we’d have just a little more time with her. 

Christmas was this past week. Christmas is a time that’s supposed to bring joy as we remember how much Jesus gave up to come as a baby to be our savior. It’s a time when we get together with loved ones. It was good to see so many family and friends and yet so terribly difficult at the same time because of the one little girl that was missing at all the different get-together’s. Christmas can be such a difficult time for so many people because it’s such a stark reminder of what they’ve lost. Many people choose to run away from friends and family during this time of year so that, in their minds, they don’t have to face those reminders. I have to admit that was a temptation this year. However, I don’t think it actually works out the way those people want it to. I think that instead of getting away from the reminders that cause them to feel so sad and lonely they end up sad and lonely anyway because those reminders follow you around, but then there’s no one around to comfort them. So yes, being around family was difficult because of what they remind us of, but being with family and friends is better than being on your own. 

We did our best to keep our traditions this year, although we didn’t fully succeed. We drove around looking at Christmas lights. We made and decorated sugar cookies for Santa. We spent lots of time with family and friends. One tradition we didn’t get to this year was a Christmas Eve gift. In the past we’ve given the kids some new pajamas to wear on Christmas Eve, a new movie, and some hot cocoa and popcorn and then we’ll eat snacks and watch the movie before bedtime. This year that didn’t happen. I think it would have been too hard. Just like taking Jackson to Silver Dollar City to see the lights was hard. Just like watching him ride her favorite rides was hard. I think the Christmas Eve tradition would have just been too much. It was just a different experience this Christmas. We missed our little girl. However, as much as Christmas hurt at times I’m thankful for Christmas. It’s because of Christmas, and what it led to, that I get to see my little girl again. 

“For to us a child is born, to us a son is given; and the government shall be upon his shoulder, and his name shall be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace.”

Isaiah 9:6

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Day 204

While Addy was still here and we were fighting to raise funds for her treatments we had some pink silicone bracelets made for people to buy. Not only did they help us raise some funds, but they also doubled as a way to bring awareness to DIPG and Addy’s fight. I didn’t always wear mine while Addy was here. At times I think it was more of a bad reminder of the long odds we were facing at a time when I just wanted to be with my family and enjoy the moment without having to worry about what could happen. I’ve worn that bracelet every day since Addy left for home.

In my line of work I go a lot of places and meet a lot of people. Most of them only pay me enough attention to give me the needed information to get the job done. This past week, however, I was talking to a man and giving him a quote for how much his installation was going to be and while we were talking he noticed my bracelet and asked what DIPG was. I got to tell him about DIPG and give him some facts about the disease. He then asked what my connection was to DIPG and I got to tell him about Addy. It was the first time I’ve made it through Addy’s story without crying in front of a stranger. It was probably a fluke honestly.

Christmas is almost here, and along with it comes Christmas traditions. Traditions that just aren’t the same this year. One of our traditions is driving around the area looking at all of the Christmas lights in the different neighborhoods around us. Last year Addy had a cold and just wasn’t feeling well during this time so we didn’t get to take her out to look at all the lights. It was something I missed getting to do last year. This year we got out and drove around looking at the lights. While we all enjoyed it, and were amazed at some of the displays, it just wasn’t the same without Addy giggling with delight at all the lights. There were still some ooh’s and aah’s coming from the back seat, but it just wasn’t the same. I’m sure we’ll continue some of our other traditions, and maybe put a pause on some of the others this year, but one thing is for sure; they’re all going to be different without our little girl.

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Day 197

Christmas is fast approaching, and with Christmas coming up fast it means that Christmas get togethers are here as well.  Having recently moved into our neighborhood at the start of winter we haven’t yet had the chance to meet many of our neighbors.  We’ve met a few, but not very many.  One of the few families we have met in our neighborhood invited us to come to their holiday get together.  

To say the least we were a little nervous going somewhere new and meeting new people.  You just never know how these things are going to go.  However, it was a lovely evening.  Jackson had a great time playing and making new friends.  We had a wonderful time talking and learning about our hosts.  

One of the best parts about the night is that they asked about Addy.  One of our hosts had added me on Facebook and had obviously done some research before inviting us over.  I was so grateful that they asked about her; that she wasn’t ignored.  While it was hard talking about her to new people and telling her story it was also helpful.  While there may have been a few tears in our eyes we loved talking about our girl.  We loved that they asked.  Yes, it hurt.  But talking about her to new people was cathartic.

Every year since my wife and I got married we’ve spent some time at Christmas with some very close friends of ours.  Sometimes it’s at our house and sometimes it’s at theirs, but we always make a point of getting together to celebrate Christmas.  This year was only a little bit different.  One of the highlights of getting together with our friends is watching our children play together.  While there were three little boys and one little girl at our friends house this year only one of those children was ours.  Our sweet friends had a little girl recently and she is the sweetest little thing.  Addy would have absolutely loved dotting on their little girl.  While Addy was not physically present at our get together she was not forgotten.  Our friends gave us a picture of our children from last year’s get together.  Addy was so happy.  She was having so much fun.  It was so good to know that our sweet girl was not forgotten.

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Day 190

Monday, December 3rd marked six months since Addy went home. While she was on my mind all day long, the day passed much like any other. I still find it hard to believe that it’s been that long. How would she have changed in those six months? What would be her current favorites? How tall would she have grown? I think that’s the hardest thing about her being there instead of here; not knowing.

We did some more unpacking this week. One of the items we unpacked was a bag full of stuffed animals belonging to both Addy and Jackson. I had forgotten how many stuffed animals she had. So many, and she loved every single one of them. She always wanted to sleep with all of them on her bed, but we never would let her. There wouldn’t have been enough room for her on the bed if they were all there so we limited her to just a few at a time and she could rotate them in and out as she wished. As we unpacked all of her stuffies there was only one real option as to where they should go. They went on her bed. Every single one of them. You can barely find the bed under all the animals. Just the way she would have wanted it. She would love it.

One of the animals that came out of the bag was her Giraffee. She loved Giraffee, and she went everywhere with Addy for many months. She’s soft and cuddly in a gently worn and well loved way. Addy loved taking Giraffee to Monterey with her for treatments because Giraffee could give her rides through the airport. Addy would stick Giraffee between her legs and do her best impression of a gallop through the terminals. She was painstakingly slow while doing this and we were usually rushing to the next gate or to our friends waiting to pick us up, but we usually gave her the time she wanted to ride Giraffee around for a few minutes before she got tired of galloping. Finally, a good memory even if it does come from a difficult time in a place where we never should have had to have been.

There was another first this week. Jackson’s birthday was this week. He turned seven. It’s his first birthday without his sister here to help him celebrate since he was two years old. Again, it was different. We took him out to eat at the restaurant of his choice, Red Lobster. My wife and I both got salads as part of our appetizers and asked Jackson if he wanted any. He didn’t. Addy would eaten both our salads. She was our salad eater. I miss my little salad eater. Jackson misses his play buddy.

A reporter from USA Today contacted me this week. He’s doing a year end story and wanted to mention the viral photo of Jackson and Addy that I shared on Facebook the day before she died. (I’ve included a link to the story at the bottom.) He wanted to know if any good had come from that photo gaining so much media attention. I’m not sure I had the answer he was looking for. He probably wanted to hear about how all the media attention had changed things for DIPG research and pediatric cancer funding. He probably wanted to hear that the media attention had somehow changed our lives. I couldn’t give him either of those answers. I could simply tell him some of the things that I hope come from the five minutes of fame that photo gained. To be honest though I don’t know if any of the attention has done any real good at this point. Yes, it probably raised some awareness of the injustice that is DIPG, but as for funding research nothing has changed as of yet. House bill 69 still sits in committee in Washington as it has done for the past three years. The leader of the National Cancer Research Institute still refuses to have anything resembling a conversation about raising the amount of funding pediatric cancers receive because they’re a “non-issue”. So did the photo do any good? I hope so. I know it reached a lot of people and that’s good because now hopefully more people know, but anything more than that I just can’t say. I hope so. That photo cost me so much. It better have had some effect.

https://www.usatoday.com/story/news/2018/12/18/2018-news-united-states-year-review/2070336002/

Day 218

It’s a new year. We rung in the New Year with family this New Year’s Eve. We tend to flip flop between spending New Year’s Eve with friends or with family and this year it was family. We also had one last Christmas with Chandra’s side of the family. 

It was good to see all of her cousins who were elsewhere for thanksgiving and Christmas. Those holidays were both a little odd with them not being there, but as I’ve written before it almost helped to normalize Addy’s absence because she wasn’t the only one missing. New Years was different. Everyone was present except for Addy and it hurt. I did my best to stay busy during the evening by either visiting or playing hearts with all the uncles. It halfway worked; until midnight that is. It all came flooding in at midnight: Addy’s absence, how much I’ve missed her over the past seven months, the fact that a new year has started  and she isn’t here to share in it, that I only have a few more months of looking at pictures from “this time last year”. 

I think one of Chanda’s uncles could tell that I was struggling. He came over and told me how much he had missed watching Addy make food for everyone at Christmas this year. Addy would always go back to the play room when we got to Chandra’s grandmas house and get out all of the play food. As soon as she had it all out she would start whipping up dishes for everyone in the house. It was almost always a three course meal. You would get started with an appetizer of French fries and chips, followed up by an entree of a hotdog, hamburger, or bbq ribs, and finished off with cookies or ice cream. His words brought tears to my eyes and I had to excuse myself before I broke down in front of everyone, but it was good to hear that she wasn’t forgotten and I wasn’t the only one missing her. 

This week was a short work week for me with New Years so it was a good week to take a couple of extra days off for a hunting trip. I’ve wanted to go duck hunting since I moved to Arkansas.  One of my good friends invited me to go with him this year so we made plans. I looked forward to this trip with great anticipation for over a month, and it was great. We didn’t shoot a ton of birds, but we did get some and I had a blast doing something new. The one thing I didn’t figure into my anticipation of this trip though was that in order to get to the Stuttgart area where we’d be hunting was that we had to go past Little Rock. In the past this wouldn’t have been a big deal. I’ve been to and past Little Rock many times and it wasn’t a problem. But once Addy was diagnosed with DIPG in November of 2016 going to Little Rock took on a whole new meaning. Going to Little Rock meant spending time at Arkansas Children’s Hospital, or at the radiation center, or some other appointment. Driving past Little Rock and seeing the exits for all this places was especially difficult this time around. The last time we were in Little Rock we found out that Addy’s tumor was progressing and that it had spread to her spine as well. We learned that we were going to lose our little girl much sooner than we had hoped. We learned that our search for a cure had failed. We learned that we were out of options. Driving past the exits for Little Rock brought all of those memories flooding back to mind. 

In the end I guess it was just another first. There’s been so many of them now and there are more to come. They don’t get any easier. You just learn to anticipate them better and bunker down for the hit. I’m so thankful for our family and friends who have helped us survive and absorb all the hits of these past few years. I don’t think we’d be where we are now if our friends and family hadn’t been so close at hand for us. I thank God for all of you on a regular basis. 

It may not seem like it at times, but God is in this situation. He’s up to something. And He’s up to something good. 

Today’s Illustration: The Loss Of A Child

BigIdeasOnLine

On This Day: June 3, 1918 — Brother Comforts Dying Sister

“An Arkansas family’s tragic photo captured hearts around the nation in June as it showed the moment a brother said goodbye to his dying little sister. Adalynn Sooter, 4, lost her battle with a rare brain tumor, but her siblings got one last chance to spend time together. Jackson, 6, rubbed his sister’s head as she grasped his hand. Then Jackson said goodnight. Addy was Jackson’s “playmate, his best friend, his little sister,” father Matt Sooter wrote on Facebook. “This isn’t how it’s supposed to be.” Though her condition worsened and the rare tumor took her life hours later, the family found hope: “She wasn’t in any pain at the end,” her father wrote.”

Facts & Information:

Family:

Mother & Father:  Matthew & Chandra Sooter

Living in Springdale, Arkansas

Daughter’s Name: Adalynn Joy Sooter — Addy

Her Brother’s Name:  Jackson Sooter

Addy’s Illness: diffuse intrinsic pontine glioma

DIPG is…

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