Help thou mine unbelief

For those who follow me on facebook or instagram, you know Matt had a successful MRI yesterday.  There's a little more to the story that I would like to share. Ever since Matt's diagnosis of a 4-cm pilomyxoid astrocytoma, I have struggled with fear and faith. I want to have the kind of faith that leaves no room for fear.  I want to be able to accept any trial with complete faith and reliance on the Lord and His plan for me and those I love. 

I struggled with the full range of these feelings as Matt's MRI approached. Fear crept in to my mind every day. When I tucked him into his bed at night, fear would whisper to me that I would lose him soon. One morning I was exercising when fear told me I needed to prepare for the worst news this week. I listened to fear and began imagining how I would react to the bad news.  Then I imagined how Matt would react.  Finally, in frustration, I yelled out loud (thankfully no one was home at the time), "STOP! IT'S GOING TO BE FINE!  LEAVE ME ALONE!" Although fear sneakily found ways to bring me down, I was blessed with nuggets of faith placed in my path this week. Random texts and phone calls with encouraging words from caring friends and family. Scriptures that spoke directly to my heart. On Wednesday a picture that has great meaning to me popped up on my facebook news feed.

I bought this picture just two weeks before Matt's diagnosis.  While Matt was in surgery, this picture came to my mind with the words, "You are not alone. Angels are with you and with Matt." When I saw this picture on my news feed on Wednesday, I knew once again that I was not alone.


Finally the day of Matt's MRI arrived. When the MRI was over, we headed to the surgeon's office to get the results. While in the waiting room, Matt played games while I took deep breaths, prayed, and read my scriptures. The phrase, "Lord, I believe; help thou my unbelief" came to my mind. I repeated these words in my mind over and over, placing my trust in Him and pushing any fear away. Finally a nurse led us into the familiar exam room where we would wait for the surgeon to come in and give us the results. This time, though, the nurse did something she has never done before. She opened the file with the MRI pictures and left them on the computer screen. What I saw did not look good.  I saw one huge white spot with two smaller white spots near it. Matt was in the room with me, so he looked at the pictures as well and said, "Hmmm...looks good to me."  I was completely terrified, assuming the white spots were tumors, but did not want Matt to know how I felt. So I sat down and tried my best to keep my cool. Fear found its way in and flooded my mind with heart-wrenching worst-case scenarios. Once again I repeated these words in my mind, "Help thou my unbelief," and prayed for the surgeon's quick arrival. The surgeon came in and relieved my mind with the words, "His scan looks great. It looks so good, I don't need to see him for another year.  Soon we'll move to two-year scans."  Turns out, the white spots were blood vessels (and this is why I should leave the MRI reading to those with medical degrees!). Peace and gratitude flooded my heart as I breathed deeper and hugged Matt.  Truthfully, I lightly shoved Matt because he teased me for being worried (he could tell, even though I had tried to hide it).  Then I hugged him and thanked the Lord for each and every precious day I get with my kiddos.

This morning I woke up with a sense of responsibility for everything I learned yesterday.  The Lord did in fact help my unbelief.  I believe the bar has been raised in my life to do all I can to dispel fear and trust in the Lord by picking up all those nuggets of faith the Lord places in my path.

Go gold for Matt!

September is National Childhood Cancer Awareness month.  Before Matt's diagnosis, I could not stand to listen to anything about childhood illness and disease.  When St. Jude commercials played on my car radio at Christmastime, I would quickly change to a different station.  I never admitted this to anyone, because I knew it was selfish.  There were things I didn't know at the time, but learned after Matt's diagnosis.  I would like to share some of our story because I understand the importance of raising awareness for childhood cancer.  Research is needed to find causes and treatments.  I have read several articles about the limited amount of money that is raised for childhood cancers (read an overview here).  Our children need and deserve better.

My son, Matthew, is a happy, rambunctious 10 year old.  Last year he was diagnosed with a pilomyxoid astrocytoma (PMA).  PMA's are defined by Johns Hopkins as, "A type of brain cancer largely seen in children"(http://www.hopkinsmedicine.org/kimmel_cancer_center/research_clinical_trials/research
/brain_cancer/pilomyxoid_astrocytoma_registry.html).  Some doctors we met are willing to call Matt's tumor benign, while others are not.  One of the first doctors we talked to post pathology report said it is definitely benign.  Since then, I have had several doctors and other hospital personnel refer to Matt's diagnosis as a cancer diagnosis.  It is confusing at best.  Each time someone refers to Matt as a cancer patient, I feel like I have been punched in the stomach.  It is not something I will ever get used to.

Matt's tumor was removed a few days after diagnosis.  PMA's can return and are known for being aggressive, so Matt has yearly MRI's to watch for recurrence.  Any recurrence will result in more surgery as well as chemotherapy or radiation. If there is no recurrence in five years, he will be considered cured.  This is what we hope and pray for every day.

Some days are easier than others.  Some days are difficult because Matt has a headache or looks cross-eyed for a split second.  Other days are hard for no apparent reason.  I have broken down, sobbing like I did when he was first diagnosed at random moments because I relive the initial diagnosis or the seizure he had after surgery.  My heart broke in these moments and breaks again each time I remember them.

I share these feelings with you, hoping that you will take a moment to Go Gold this month.  Instead of eating out, send a check to a pediatric research hospital.  Take a few minutes this month to pray for children who are diagnosed with cancer and their families.  Children deserve a happy, carefree childhood. Let's unite our efforts for the brave children whose innocent childhoods are interrupted by surgeries, long hospital stays, and painful medical treatments.

Go here to find 30 ways you can support the cause.

Thoughts on fear

A couple months ago I was not in a good place emotionally.  Even though Matt is doing great, I was overwhelmed by what I was learning about pediatric brain tumors.  I was hearing stories of tumor recurrence, horrific chemotherapy side effects, etc.  I received a call from a research study group and a very well meaning individual said a very insensitive statement that terrified me.  A thought kept coming into my mind that I unfortunately listened to, which told me that I was stupid to believe in miracles or to feel any hope. I was completely overwhelmed and paralyzed by fear and anxiety.

Thankfully I am blessed to have incredibly wise friends.  I was sitting in a restaurant with a couple of these wise ladies, telling them how I felt through lots of tears (I hate doing that in public places!). They lovingly talked me through my emotions and shared some of their own experiences.  Even though their experiences are different from my own, I felt of their strength.  The next day I drove by myself to Utah for a fun day of shopping with another friend of mine.  The quiet, 2 1/2-hour drive was exactly what I needed.  I prayed most of the drive and finally put all the pieces together.  I was able to recognize what was making me miserable and I set specific goals to help me get out of the dark place I had been in for a couple of weeks.  I realized the thoughts I mentioned earlier, about being stupid to believe in miracles or feel hope, were not my own thoughts.  They were thoughts from the adversary who wants me to be miserable.  Listening and entertaining those thoughts had, in fact, made me miserable and was impeding my spiritual and emotional growth.

I have felt incredibly happy ever since this realization.  Of course I have been taught these principles of faith and hope since I was a young child, but applying them in the midst of evil voices and such a terrifying trial is quite a different story.  It takes daily effort to push the other voices out and replace them with words of faith and optimism.  I have also learned so much the past year about relying on the Lord.  I have felt the peace that only He can give during the most trying moments of my life.  I was trying to carry this burden by myself.  I had asked Him to help me carry the burden of Matt's diagnosis and the trauma I watched him experience in the hospital, but I needed to ask him to help me with the trial of fear.  This is another daily effort I make, to give Him my burden because He has already carried it.  Only He knows how to truly comfort and calm me.

I heard a lot about fear and faith during conference this weekend.  I'm so grateful for the messages I heard that helped strengthen my understanding of the role fear plays in my life and what I can do about it.  Two talks immediately come to mind.  You can find them here and here.

Speaking about fear, Elder Bednar said, "This potent emotion is an important element of our mortal existence.  An example from the Book of Mormon highlights the power of the knowledge of the Lord to dispel fear and provide peace even as we confront great adversity.  In the land of Helam, Alma's people were frightened by an advancing Lamanite Army.  But Alma went forth and stood among them, and exhorted them that they should not be frightened, but should remember the Lord their God and he would deliver them.  Therefore, they hushed their fears.  Notice Alma did not hush the people's fears. Rather, Alma counseled the believers to remember the Lord and the deliverance only He could bestow.  And knowledge of the Savior's protecting watch-care enabled the poeple to hush their own fears.  Correct knowledge of and faith in the Lord empower us to hush our fears because Jesus Christ is the only shource of enduing peace.  He declared, "Learn of me, and listen to my words; walk in the meekness of my Spirit, and you shall have peace in me" (D&C 19:23).

I have felt my heart change over the last couple of months as I have actually felt gratitude for these trials.  I am grateful because I have experienced the Lord's mercy and comfort in ways I just wouldn't understand any other way.  I am a better mother because of what I have learned.  And I have been able to look at fear in a completely new light, as an opportunity for me to grow closer to my Savior and learn.

Spring Break 2015

Jason had some work to do in Spokane during Spring break, so the kids and I decided to tag along with him.  It was a great trip!  We spent a lot of time at the hotel's pool.  When I would ask the kids what they wanted to do, the reply was always to go to the pool.   A couple of the days in Spokane were a little cold and rainy, so we had to find some indoor activities.  We found a fun children's museum that everyone enjoyed.  William was a little bored since it was definitely geared to a younger crowd, but he was a good sport and didn't complain.  Matt, Rachel, and Owen had a blast.  They could have easily spent the entire day there.  We also went to an indoor water park.  It was smaller than we had expected, but still a lot of fun.  We knew it was time to go when Owen fell asleep on Jason's lap in the wave pool.

We were able to visit with Jason's cousin, Stacy, and some of her family one night for dinner.  We went to an amazing pizza place.  Now that I think of it, I'm completely craving their meat lovers pizza.  It was fabulous to see some familiar faces on our trip, I'm so glad we were able to meet up with them!  Stacy recommended going to Coeur d'Alene since the next day was supposed to be warm.  It ended up being in the 70's and the lake was so beautiful!  We parked downtown and spent some time at the lake watching the sea planes land.  Owen thought he wanted to splash his legs in the water and quickly learned how cold the water was at the lake.  There was an awesome park right by the lake with a huge wooden playground.  Before leaving we walked around the shops, which reminded us a lot of West Yellowstone.  We found a yummy ice cream place and ordered small ice cream cones.  The small cones ended up being huge, almost more than we could eat!

Originally I wanted to go to St. George for Spring break, but I'm so glad we headed to Spokane instead.  I haven't spent time there before, so it was all new to me.  It's a beautiful area with a ton of great family friendly activities.

Here are a few fun pics from our trip:

Peace beyond understanding

Matt had another MRI yesterday.  This MRI was originally scheduled for December, but was moved up because Matt has complained of several headaches.  Every time Matt has an MRI, I experience so much anxiety.  I cannot help but remember the first CT scan which showed the brain tumor.  I hear the ER doctor's words over and over in my head, "Matt has a brain tumor.  It's quite large and has probably been there a while."  I can't eat or concentrate while he's getting an MRI.  I usually pace the halls of the hospital, chatting with Jason while we wait.  I get really chatty when I'm nervous.  And Jason is willing to let me chat his ear off.  As this week's MRI approached, I found myself consumed with worry.  I couldn't stop thinking about what they were going to find and what Matt would have to go through.  I kept thinking about how crushed he would be if they found residual tumor that had started to grow.  One night I knew what I needed to do.  I went to the temple, where I knew I could more easily feel peace.  I was sitting in the chapel and read a couple of scripture verses that replaced my anxiety with peace and perspective.  I flipped to this verse in Words of Mormon 1:7:

"And I do this for a wise purpose; for thus it whispereth me, according to the workings of the Spirit of the Lord which is in me. And now, I do not know all things; but the Lord knoweth all things which are to come; wherefore, he worketh in me to do according to his will."

This verse has special meaning to me.  I had a conversation with my bishop in June when we came home from the hospital.  He said it would be helpful for me to remember that Matt is God's son.  He was God's son before he was mine and I needed to trust God's plan for Matt.  Even when that plan wasn't what I had wanted or hoped for.  I've been trying to do that ever since.  It's one of the most important lessons I have learned from this trail.  

After giving this verse some thought, I followed one of the footnotes to 2 Nephi 27:23:

"For behold, I am God; and I am a God of miracles; and I will show unto the world that I am the same yesterday, today, and forever; and I work not among the children of men save it be according to their faith."

I believe in miracles.  I've witnessed incredible miracles ever since Matt was first diagnosed.   I didn't feel that I knew how the MRI would turn out.  I didn't know if Matt would need chemo or not.  But I did know that in the midst of this difficult trial is a purpose, greater than I can imagine. I was also reminded that the Lord  works miracles in our lives.  I knew it was time for me to exercise a little more faith by completely trusting in Him and to be more optimistic, inside and out.

So Matt had his 4th MRI since May (not counting all the CT scans).  I was surprised by how many nurses I recognized.  I guess that's what happens when you're in the hospital for several days.  Matt picked a movie to watch during the scan, he chose Despicable Me 2.  I gave him a huge hug before the nurse got him settled.  We left right after I snapped this picture, headed for the waiting room.  As I sat in the packed waiting area, I noticed worried parents and too many sick kids.  Many of the kids were obviously cancer patients.  I prayed for Matt, then felt guilty for asking for so much while others are deeply suffering.  Jason and I talked about plans to return to Primary Children's in December.  We want to give back.  Next thing I knew, Matt came out with a huge smile on his face and we headed to the doctor's office.  His doctor felt quite confident that the small dots are just scar tissue, since they have not grown at all in the last couple of months.  Knowing the tumor is completely gone was a huge relief.  A child's prognosis is much, much better after a complete resection.  This means Matt won't need another MRI for 6 months!  This is the best news we've heard in a while!  We were all beyond excited and ready to move forward.  We went to In-N-Out before heading home, celebrating with double cheeseburgers and milkshakes!  

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.