Update on Awesome Matt- MRI results

Last month Matt had a follow-up MRI to make sure the surgeon had removed the entire tumor.  We met with Matt's surgeon right after surgery (in June) and he was confident he had gotten all of it, so we went into the MRI very optimistically.  I want to point out that Matt has had several MRI's since May and has been able to get through each one without any sedative at all.  MRI's take 45 minutes to an hour.  That's a long time for a 9 year old boy to stay still!

Jason and I walked around outside Primary Children's during the MRI.  When it was finished we met with the surgeon to look over the results.  First the surgeon refreshed our memories by showing the first MRI, the one with the 4 cm brain tumor.  Matt stood up to get as close as he could to the screen as the newest MRI images came up.  The MRI without contrast showed nothing, which was fabulous.  However, the images with contrast showed two tiny, white dots. Matt immediately looked at me, eyes huge with worry.   The good news is that it's very tiny, less than 1% of the original tumor.  The doctor explained to us that it could be scar tissue or residual tumor.  He said the imaging would be sent to Matt's oncologist so she could take a look at it.  Then the tumor board (including Matt's surgeon and oncologist) would meet in a week to discuss the best plans for moving forward.  He explained two options, another MRI in a few months for comparison or a chemo regimen, which would start immediately.  Jason and I were not prepared for this.  I don't know if it's possible to be prepared for the news that your child might need chemo.  It's terrifying and heartbreaking.  We drove home with heavy hearts, but were sincerely trying to stay hopeful and optimistic.

I struggled with the little things when we got home.  Dishes, laundry, homework...all of it felt like more than I could handle.  I did my best to push the "what ifs" out of my mind and to move forward with my life.  By the end of the week I felt ready for whatever the doctors decided.  A lot of my worry was replaced with gratitude for amazing doctors and modern medicine.  We finally got a call from the doctor who said the entire tumor board felt that it would be okay to wait a few months for another MRI.  So we'll be heading back to the hospital in December.  We are hopeful, but a little more prepared for all possibilities.

During the appointment Matt's doctor said it was time to wean him off his anti-seizure medicine. Matt had a seizure a couple hours after surgery and it is one of my worst memories from the hospital, mostly because I was alone with him when it happened.  I knew something wasn't right and asked Matt's nurse (who was just outside his room) for help.  He didn't believe me, dismissing my worry completely, and turned away to use his computer.  I still felt like something was wrong, so I kept talking to Matt about anything that might interest him.  I showed him some movie options when his seizure worsened and he became unresponsive.  I ran back to his nurse who finally listened to me and decided to actually check on Matt.  He tried talking to Matt, then ran out of the room quickly and made a phone call.  Next thing I knew Matt's room was full of people, rushing around.  They put a crash cart on the end of his bed and sent him to get a CT scan.  Jason and I were able to go along.  We held hands as we anxiously watched our little boy go into the CT machine, completely scared out of our minds.  Everything ended up being okay and Matt was immediately put on anti-seizure meds. When we were told to start weaning him, I was terrified.  I didn't want to relive what had happened in the hospital.  It took me a week to actually start weaning him.  Thankfully Matt hasn't had any problems at all and is now completely off all meds!  And it only took a few more years off my life to do it ;)

I realized this week that I can no longer remember what it was like to not worry about my kid's health.  I have no idea what that is like anymore. I am not yet at the point where I can say I'm grateful for this trial.  I think I'm in a grieving process as I deal with my new reality.  I have learned so much from this trail though, life changing lessons that I am deeply grateful for.  I have heard people who have gone through much worse say that they wouldn't have it any other way.  I hope I get there.  I think I will in time.

Brain tumor- Part 3

We were at Primary Children's for nine days.  During the days I kept busy distracting Matt and talking to doctors.  When Matt would fall asleep at night all of my demons came out.  It seemed as if the weight of everything that had been happening would settle on me as soon as Matt's eyes closed each night.  I was really struggling one night in particular.  Matt was improving quickly and doctors were optimistic, so I wanted to feel grateful.  But I didn't.  I felt heartbroken and sad beyond belief.  I expressed some of my feelings to Jason, but he was feeling the exact opposite of how I felt.  He was both grateful and very optimistic about the future.  I was happy he was able to be in a better place than I was, but I also felt really alone.  I said a prayer, asking for help to calm my mind and heart.  I opened my scriptures and felt prompted to search for a scripture about peace.  I turned to 2 Nephi 4:26:"O then, if I have seen so great things, if the Lord in his condescension unto the children of men hath visited men in so much mercy, why should my heart weep and my soul linger in the valley of sorrow, and my flesh waste away, and my strength slacken, because of mine afflictions?"  When I read this verse, I felt that Nephi was describing exactly what I was feeling.  My heart was weeping and I was in a valley of sorrow.  I read on, looking for ways to find the peace I was searching for.  A couple phrases in verses 34 and 35 comforted me as I remembered the Lord is always with me.  "O Lord, I have trusted in thee, and I will trust in thee forever.  Yea, I know that God will give liberally to him that asketh.  Yea, my God will give me, if I ask not amiss; therefore I will lift up my voice unto thee; yea, I will cry unto thee, my God, the rock of my righteousness.  Behold, my voice shall forever ascend up unto thee, my rock and mine everlasting God."  I realized I was trying to carry this difficult burden on my own.  From this point on I allowed the Lord to help me carry this burden, relying on Him and placing all my trust in Him.  I'm not saying this journey isn't difficult or painful.  It is.  It is the toughest thing I have faced.  My heart still breaks and I have moments of fear and sadness, but those feelings are always followed by a peaceful reminder that I am not alone.

Puerto Rico

Jason had to attend meetings in Puerto Rico, so I decided to tag along.  We loved everything about Puerto Rico!  We explored Old San Juan, went horseback riding in the foothills of the rain forest, went tarpon fishing, and spent hours swimming in the pool and ocean.  I only wish we had stayed a few days longer!

Mesa Verde

I finally scrapbooked our pictures from Mesa Verde.  I highly recommend spending a couple of days in Mesa Verde.  It's a fascinating place and some of the tours are quite adventurous.  William and I went on a tour that required us to climb ladders as tall as 32 feet and climb up tiny stairs along side a steep cliff.  It was a little terrifying, but definitely worth it.  Our first tour guide was a retired history teacher and was passionate about the history of the area.  The kids were impressed by everything Jason knew about the Anasazi people.  On the way home from Mesa Verde, Matt said he wants to be an anthropologist like his dad :)

Matt is strong

When we were first told about Matt's tumor, I fell apart.  I had to find a way to hold it together when we went back into Matt's room in the ER so we could tell him without falling apart again.  That was one of the toughest moments of my life.  Matt immediately knew it meant brain surgery and wanted nothing to do with it.  He's a very inquisitive child and began asking questions.  He asked what would happen if we left the tumor in his brain.  We tried going around the question, gently letting him know that surgery was important.  Finally, he looked into Jason's eyes and said, "Dad, tell me.  Tell me what will happen if we leave it there."  Jason answered Matt's question simply and honestly.  Matt's demeanor changed as he became more serious and he said he wanted to have it taken out.  He didn't look scared, he looked ready to fight.

There were only a few times in the hospital when Matt was truly scared.  Even when he did become scared, he never screamed or cried.  It was amazing.  I still cannot get over the courage I saw in my little boy.  It is something I will always carry with me as I face my own trials.  The night before surgery he said he was afraid of dying or waking up during surgery.  I climbed into bed with him and held him in my arms.  I asked him if he wanted to say a prayer.  He folded his arms, bowed his head, and offered a simple, heartfelt prayer to our Father in Heaven.  He asked for peace.  A few minutes later he was sound asleep.  

The night before surgery, settling in for the night.

A couple hours after surgery Matt had a seizure.  Doctors had not warned us about this, because they didn't think it would be a problem for Matt since he had no seizures prior to surgery.  During the seizure he lost the ability to talk or move his eyes.  Also, he lost control of his left side.  Thankfully I was allowed to remain by his side during the entire ordeal.  Doctors would ask him to stick his tongue out and while he couldn't stick it out, we could see his tongue moving inside his mouth.  They asked him to squeeze their hands and he would squeeze tightly with his right hand.  When asked to move his feet, he moved his right foot and leg as much as he could.  As they prepped him for a CT scan to make sure all was okay (and it was), I had time to hold his hand and talk to him.  Occasionally I asked him to squeeze my hand and every time he responded with a gentle squeeze.  Eventually I didn't even need to ask.  As soon as he felt me take hold of his hand, he would squeeze mine.  His hand seemed so tiny and to me he seemed so frail.  However, as I have thought back to this, I have realized how strong he was.  He never gave up or stopped showing us he was there.  He fought hard and pulled through.

Once he knew he was allowed to get out of his room to go on walks, we could hardly keep him in his room.

During recovery he constantly challenged himself.  The first few times he stood up proved difficult because he was very dizzy.  That didn't stop him from wanting to get out of bed, though.  One day when he saw his reflection in a small bathroom mirror for the first time after surgery, he immediately made a face in the mirror that looked exactly like this:  

This is what we call Matt's determination face.  It's his "I'm going to fight this," kind of look.  We've seen it a million times before and were so happy to see it come out that day.  

The day we came home from the hospital was just six days post surgery.  If you had stopped by our house that day, you would have found Matt outside with his friends.  He played hard that day.  The next day was Sunday and he stayed for all three meetings.  He came home excited about the lessons he learned in Primary.  He has really enjoyed learning from the Old Testament this year.  He sometimes tires easily and wears himself out when he plays too hard, but I am reminded everyday of his incredible strength and persistence.  

Six days post-op

Brain Tumor- Part 2

In the last post I wrote, I talked about Elder Holland's address, The Ministry of Angels.  As I read further, I read this paragraph and immediately knew this would be the topic of my next post.

"I have spoken here of heavenly help, of angels dispatched to bless us in time of need. But when we speak of those who are instruments in the hand of God, we are reminded that not all angels are from the other side of the veil. Some of them we walk with and talk with—here, now, every day. Some of them reside in our own neighborhoods.  Indeed heaven never seems closer than when we see the love of God manifested in the kindness and devotion of people so good and so pure that angelic is the only word that comes to mind."

So many people helped our family during this difficult time.  I would like to write about every act of love and kindness, but it isn't possible.  So many friends and family members went above and beyond to express love for our family and especially for Matt.  People around the world prayed and fasted for his well being.  Jason and I received countless text messages and emails from people who offered help and genuine, heartfelt messages.  Every day I think about everyone who served our family during this scary time and I know they are the angels on earth described by Elder Holland.

Matt and his teacher, Michelle.  She and her husband, Doug, came to the hospital on Saturday to bring us lunch and spend time with Matt before surgery.  They returned Sunday morning to sit with Jason and me during Matt's surgery.

Words are powerful.  If you know someone is struggling, don't hesitate to offer loving words of support and love.  Even if you don't know someone is struggling, offer smiles and compliments generously, because you will most likely lift someone who needs lifting.  When we returned home, we had a huge pile of mail waiting for us.  Matt's eye doctor and the office staff sent Matt a card, with hand-written messages from each of them.  He loves that card and I have seen him read through the messages several times.  We may not know how our words or acts of kindness help others, but I believe there is nothing greater we can do for those who are passing through trials.

Miracle Matt's welcome party- welcoming him home six days after surgery!

Brain tumor- Post 1

I have considered writing about this for some time, but I struggled to find the right words to express all of my experiences and feelings.  At the end of May I took Matt to the ER after his eye doctor discovered that his optic nerves were protruding.  About an hour into the ER visit, a doctor called Jason and me into the hallway and said these words I'll never forget, "Matthew has a brain tumor.  It's quite large and has probably been there a while."  He said the words fast and my mind struggled to understand how such a horrible thing could be happening to my sweet, kindhearted 9-year old son. Next thing I knew we were headed to Primary Children's in Salt Lake City with a tired and scared little boy in the backseat, upset by the IV in his arm.  The next nine days were full of ups and downs.  I've never prayed so much in my life and have never felt so close to heaven.  I have also never felt so low, have never seen so many sick and hurt kids, and have never felt so powerless.

As I thought about what I should write, I decided I would share the miracles I witnessed during this horrific nine days.  Because, despite this nightmare, I did experience miracles beyond comprehension. One of many miracles occurred during Matt's surgery.  Right before they wheeled Matt into surgery, Jason and I showered him with kisses, held his hands, and promised we'd see him in a little while.  As soon as they took him back, I lost it.  I was so afraid and didn't know how I would get through the hours ahead.  I remember wishing that the doctors would give me some meds to knock me out for while!  I tried sitting in the waiting room, but I could not sit still.  I discovered the best way for me to pass time was to walk up and down a little hallway outside the waiting room.  While pacing, I noticed a little round mirror near the ceiling.  All I could see in the mirror was an empty hallway and myself. Immediately an impression came into my mind that although I could only see myself, there were angels walking with me, comforting, strengthening, and empathizing with me.  Then I had another distinct impression that there were angels with Matt, looking over him when I could not.  I was filled with greater peace and love than I could ever possibly express.

One of my favorite talks is The Ministry of Angels by Elder Holland.  I read it again today and was struck by these words:

"From the beginning down through the dispensations, God has used angels as His emissaries in conveying love and concern for His children. 

In the course of life all of us spend time in “dark and dreary” places, wildernesses, circumstances of sorrow or fear or discouragement.

But I testify that angels are still sent to help us, even as they were sent to help Adam and Eve, to help the prophets, and indeed to help the Savior of the world Himself.

I ask everyone within the sound of my voice to take heart, be filled with faith, and remember the Lord has said He “would fight [our] battles, [our] children’s battles, and [the battles of our] children’s children.” 

A very sleepy little boy after surgery.