Wednesday, June 26, 2013

One Year Ago

One year ago today, my then 3 year old baby woke up.  It was a Tuesday morning. We had (and still have) a morning ritual.  He would get on the couch, I would cover him up with his blanket, and then I would fix his coffee milk.  As I was tucking him under his blanket, I looked at him and said, "Your eye is swollen for some reason." It was so faintly swollen that no one, not even my husband, noticed.  I think that later on in the day, when I told Lance, he thought that I had surely lost my mind.

We went on about our day as planned.  Wyatt was attending a camp all week from 8-5, so Reid and I were playing together all week.  Tuesday we went to a friend's house to play with her 3 girls.  She told me later on that she never noticed that his eye was swollen even a tad. Mother's intuition is definitely a TRUE thing! After we left my friend's house, we went to Chick fil A on Millerville.  Reid LOVED to go to Chick fil A.  Little did I know, it would be the last time he would be able to go to Chick fil A for a VERY long time.  As a matter of fact, we still haven't been to one a year later. He played at Chick fil A for about 1 1/2 hours.  I found a table right by the glass of the indoor play area, and he played to his little heart's content.  I texted my friend and told her that we were STILL at Chick fil A after we had left her house 2 hours before.  We both laughed at how I should bring him to play there more often! Throughout the day, I asked a few friends if their child had ever had a swollen eyelid.  Some said yes, and all agreed it was likely an allergy. I started giving him Benadryl.

The next day Reid and I went to the library.  I had talked to a friend of mine who uses the same pediatrician as we do.  We both agreed that I should call Dr. West the next day if his eye wasn't any better. Ironically, I saw my pediatrician at the library with her sons.  She looked at Reid's eye and agreed that she thought it was an allergy.  She told me to continue to give him Benadryl, and she said if he hadn't improved by the following Monday to bring him in for a visit.  I said these very words, "I was just worried that it could be something serious." What in the world would make me say that? Once again, it was swollen so slightly that no one would notice it but me. My pediatrician said the worst thing it could possibly be was a cataract.  So, we went on about our day having fun, but I couldn't shake the worry.  Again, Lance thought I was crazy!
 
The story continues that I brought him to see Dr. West on July 3.  By then, Reid's eye was noticeably more swollen.  Dr. West brought up the word tumor referring to a brain tumor. Wyatt was with us at the appointment.  I scared him to death because I literally almost fainted.  I had to lie down on the table to keep from fainting.  Dr. West said that she was going to call an ophthalmologist to get us in that day.  She wanted the eye doctor to look behind the eye to make sure that nothing was pressing on the optic nerve. Dr. West made the appointment for later that afternoon.  I finally gained my composure enough to be able to drive.  I immediately called Lance and told him to come home and meet me immediately.  My mother in law came to pick Wyatt up, and Lance and I drove to Baton Rouge to the ophthalmologist's office.  The eye doctor thoroughly examined Reid's eyes.  His vision was 20/20 in both eyes, and she saw nothing concerning behind his eye.  I breathed the HUGEST sigh of relief ever.  She gave us some ointment to put in his eye and told us to come back in 3 weeks. Looking back now, I wonder how she missed it! I have no love loss for her. She saw Reid once again the day that we were admitted to OLOL. To say that I don't care for her is an understatement.
 
As the next 2 weeks progressed, Reid's eye started swelling more and more. I spoke to my pediatrician on the phone after about 1 more week. We also had spoken to someone at OLOL, and we had an MRI scheduled for some time in July. After one more week of not being able to eat or sleep, I took Reid back to Dr. West on July 17.  I had kept my friend's son that day so that he and Reid could play together.  She knew the anguish that I was going through with worrying so much that something was wrong.  When my friend came to pick up her son on that July 17 afternoon, I asked her what she thought.  She could have sugar coated it and told me what I wanted to hear.  But instead, she was honest with me, and she told me that she thought it looked like it was bulging.  Those words caused me to get on the phone with Dr. West's office. It was no coincidence that Dr. West had a 2:30 appointment available.  It was about 1:45 when I called. I called Lanced and told him to meet us there. Still at this point, Lance believed it was an infection or something minor. When Dr. West walked in, I saw on her face that she was very concerned.  I have been using her since Wyatt was 2, and she has never had that look on her face.  She did a few little exams of Reid's eyes, and she told Lance and me that she was calling OLOL to get us admitted so that we could have an MRI first thing the next morning.

Well, the rest is history. The next morning, Reid had the MRI. A few hours later we met Dr. Emma Jones who is Reid's Baton Rouge oncologist.  We love her.  She has the best bedside manner of any doctor that I have ever met. She is a tiny thing, but she is so full of intelligence, wisdom and compassion. Sadly, she is moving to Boston. She is going to work with palliative care patients in Boston.  She said that it is always something that she has wanted to do.  Palliative care deals mostly with end of life patients as well as patients who have a major life change (such as amputation, etc.) I can't think of anyone better suited to work in this field than her. She helped us so tremendously through all of this last year.  I will forever be grateful for Dr. Jones.

On Thursday, July 26, we arrived in Memphis. This day will go down in history as one of the worst days of my life.  Everyone was wearing their I HEART St. Jude shirts, and I just wanted to scream at the top of my lungs. I still don't want a shirt that says I HEART St. Jude.  I love the work of St. Jude, but no place such as St. Jude should ever have to exist. But I DO love the life saving mission of the hospital. We met with Reid's Memphis oncologist on Thursday afternoon. Dr. Mark Hatley is a great doctor.  He has a combined PhD and MD. He is so smart, but he is a very compassionate doctor as well.


On Friday, July 27, we met the Radiation Oncologist, Dr. Krasin. I love Dr. Krasin! He loves the kids that he works with, and it shows.  He has laughed with us and cried with us.  He is an exceptional human being.

 
Both of these doctors were so very optimistic for Reid.  His original diagnosis was Rhabdomyosarcoma. Orbital rhabdo is very curable.  My biggest worry at the time was that Reid's vision in his left eye would be compromised in some way.  Little did I know what that afternoon would hold.  Late in the afternoon, a nurse told us that Dr. Hatley, our oncologist wanted to see us again.  He dropped the bomb on us that the diagnosis of rhabdomyosarcoma could not be confirmed under the microscope.  Lance and I were dumbfounded.  We weren't sure of what that meant.  What Dr. Hatley didn't come out and say was that they were 100% sure that it WAS NOT rhabdo. The rest of the weekend we put on a happy face for Reid even though we were dying on the inside.  We must have spent 12 of 24 hours of Saturday and Sunday on our phones googling what it could possibly be. We took Reid to the Memphis Zoo and the Children's Museum.  I don't really know how we made it through the weekend. What we didn't realize was that the next 5 days would be the most excruciating days of waiting that we ever endured.  And all the while, Reid's eye was worsening to a horrible extent while we waited.  A full week later, on Friday, August 3, Dr. Hatley told us the horrific news that the diagnosis was Spindle Cell Sarcoma. And Reid's tumor was EXTREMELY aggressive. They categorize tumors in stages (his was Stage 2) as well as by how fast the cells are dividing, etc.  Reid's was a grade 4+. This finding explained the drastic change in Reid's eye over the week we were waiting at St. Jude. He also told us the news that Reid's eye would have to be removed.  I remember exactly what I was doing.  I was looking at the floor, and I half way heard what he said.  I looked up and said, "What?" I totally didn't get what he was saying.  And I lived in a magical world of denial for the next 3 months!
 
We were then told that we were being admitted for Reid to start chemo. Two things that we have learned about St. Jude is a) they don't waste a second of time waiting for anything b) things can change in a New York minute.  We did not know that Reid would be starting chemo that Friday evening, but just that fast we went upstairs to the hospital room, and our baby was hooked up to an IV filled with poison to kill this monster. I have blocked out much of this week which brought me to my knees and put me flat on my back on many occasions. I lost a tremendous amount of weight from July to October of last year.  I simply could not eat.  I felt sick to my stomach at the sight of food. However, if you have seen me lately, you know that I have gained it all back:) LOL! We were in the hospital for Reid's first round of chemo until Tuesday, August 7. We packed up the car and drove him just in time for me to bring Wyatt to his open house at school.  Wyatt started school his first day of 5th grade the very next day.
 
At some point in the journey we met Dr. Wilson, the eye surgeon. His bedside manner is a little rusty, so we definitely started out on the wrong foot. Lance and I looked him up on U.S. News and World Report's Top 100 doctors list.  He is listed as the top 1% of eye surgeons in the United States. If your child has to have such a horrendous surgery, it helps to have one of the top surgeons in the country perform the surgery.  I don't have a pic of Dr. Wilson, but he works with a nurse practitioner named Tracy that we ALL love! She texts me out of the blue all of the time to tell me that she is thinking of us. She is a treasure!
 

 Seeing these pictures of Reid with no hair makes me so sad.  To think about what we have walked through, we wonder how we made it.  I say sometimes that I am still alive, and that is about all I can say. Lance and I are changed forever. Some in good ways, and some in bad ways. We have our house up for sale. Yesterday a couple came to look at our house for the second time.  I have taken most of my pictures down because that's what HGTV says to do:) Anyway, yesterday I was thinking that people walk through our house and think these people are blessed...they have a beautiful home with beautiful kids. Both of those things are true, but these people have NO IDEA that we have walked through HELL for the last 12 months.  Isn't that true of everyone? We look at people on the outside and judge them by the clothes they wear, the house they live in, and the car they drive.  Yet we have no clue what is going in underneath all of that. May we show grace to everyone that we meet, because we have no idea what battles they are fighting.
 
Our fight with Reid is far from over.  We go back to St. Jude on August 14th for his next set of post treatment scans. Please begin praying again that our precious son's battle with this ferocious monster is over for good.  Pray that he will live a long and healthy life from this point on.  He is SO FULL of life.  We just returned from Reid's Make a Wish trip.  We went on a Disney Cruise.  It was a fabulous five days of forgetting all of the bad that we have been through. Reid is so brave.  He handles other children's questions with grace and strength.  Lance and I were watching Wyatt and him in the hot tub on our last day on the cruise.  A young girl asked Reid what happened to his eye.  He never misses a beat. Our answer to all children is, "He had surgery".  Most children can grasp that concept.  It's easier than saying he had cancer.  Most young children can't understand what that means. We asked Reid after the interaction with the little girl, "What did you tell the little girl that asked you about your eye?" We couldn't hear him when the actual interaction took place.  He answered, "I told her I had surgery."
 
Yes, you did sweet boy.  You have been through more than any person should ever have to endure.  And you faced it all with the bravery of a grown man.  You never asked why, you never cried or complained (except when they were accessing your port), and you never acted sick.  Your dad and I witnessed a miracle in you on the day that you were born.  And we have witnessed a miracle in you every day over the last year. We are blessed to be your parents.  You have taught us so much. We will never stop crying out to God for your life.
 
We will never stop praying for you and all of the other children we have met who have fought their own battles very bravely as well.  We will never stop praying for the families we have met who have lost their children.  About 2 months ago, 3 children that we have met personally lost their battles.  This fact is the hardest pill to swallow.  Babies die at St. Jude every day.  But they never stop trying to find answers and heal these precious children of this hideous disease.
 
When we were at St. Jude for Reid's second surgery in February, I was standing at our door looking out into the halls of the hospital. I told Lance that the sights you see at St. Jude reminded me of a military hospital, except these children never signed up for this. Lance and I are participating in the St. Jude marathon in December. One of the moms that I have met on FB ran in it last year.  She has a picture of herself on Facebook on race day.  She wrote on her arm the words "my child never trained for cancer". Truer words have never been written. If I pass out trying to cross the finish line of the 1/2 marathon on December 7, I will have in my mind that any pain or fatigue that I feel is nothing in comparison to what my child has endured.  And he did it all with no training and with no complaints.
 
Our hero
"More than that, I count all things to be loss in view of the surpassing value of knowing Christ Jesus my Lord, for whom I have suffered the loss of all things, and count them but rubbish so that I may gain Christ,  and may be found in Him, not having a righteousness of my own derived from the Law, but that which is through faith in Christ, the righteousness which comes from God on the basis of faith, that I may know Him and the power of His resurrection and the fellowship of His sufferings, being conformed to His death; in order that I may attain to the resurrection from the dead.
Not that I have already obtained it or have already become perfect, but I press on so that I may lay hold of that for which also I was laid hold of by Christ Jesus. Brethren, I do not regard myself as having laid hold of it yet; but one thing I do: forgetting what lies behind and reaching forward to what lies ahead, I press on toward the goal for the prize of the upward call of God in Christ Jesus." Philippians 3:8-14

2 comments:

Love Zubiller said...

Your story is amazing. I'm a friend of the Dismuke's. I wish you and your family long, happy, healthy lives. Your son truly is a hero and you should be so proud. :-)
Hang in there, and keep smiling,
Love Z.

Melanie said...

I am a friend of Michelle's and have been following your journey. I am a runner and I am signed up for St. Jude in December also. If you have any questions or need any running advice feel free to contact me. Praying for your sweet boy and your whole family!

Melanie