9 month MRI - September 29th, 2010

Today Oliver had his nine month post diagnosis MRI down in Iowa City. This was a difficult one for me because nine months ago we were told he had 9 - 12 months left to live. We don't know exactly what the future holds or how things will eventually unfold and so this MRI was particularly nerve racking for me. Ed and I thought that it could possibly be growing because he was starting to complain of nausea every once in a while again and his eye was turning further and further inward. I was surprised to find out that there was no new growth and that it may have even shrunk a bit!!! What WONDERFUL news! This news means more time with Oliver -- more memories to make! Thank you, seriously, thank you for your prayers and your genuine concern for our family. It makes all the difference!

Thank you to Mike, the MRI Tech, for giving Oliver an early Halloween treat! Usually during Oliver's radiation treatments they had candy for him to choose from afterwards, but they all had nuts so he couldn't eat them (he's allergic). Mike was so kind to remember this and made up for it by stocking a trick-or-treat pumpkin with skittles and starburst... two of his favorites! It's the little things... seriously...

Oliver's Talk in Primary

Sunday, March 28, 2010 -

Today at church Oliver gave a talk in Primary (his Sunday School class). The topic was "God Speaks Through Prophets". He read a small story from the children's church magazine, "The Friend" and then bore his testimony about how he knows that prophets tell us about Heavenly Father's commandments and that we need to follow them because that's what Jesus would tell us to do. We had just talked about that same thing during our nightly scripture study with the kids.

I got teary eyed watching him give the talk, not knowing if it would be his last one. He'll have much to do on the other side, I'm sure. I know that if Heavenly Father wants him then He'll take him at that time. Prayers don't change Heavenly Father's will. I don't pray for the things that I want... I pray for knowledge to make good decisions and for peace and strength to get through the days that lie ahead. Every day I try to make my will align with His will... which is a struggle some days. Some days I just don't want to go on, but I just have to trudge through what life throws in my path.

My Heart is Full

I have seriously been overwhelmed by how many people have opened their hearts to our whole family at this time. I'm so grateful for everything that you all have done for our family ESPECIALLY your prayers for strength and peace to get through these tough times. I'm grateful for your prayers for Oliver's health and continue to ask for your thoughts and prayers to be with him. We know that this is the Lord's will and that we came to this earth to receive a body and when the times comes to return to live with our Heavenly Father it is His will. I just pray that we can have wonderful memories and create new ones this year with him. He has been a wonderful blessing to our family and continues to be a great example of strength and faith during this time of pain and uncertainty. He is a valiant spirit, that is for sure and I'm learning so much and drawing closer to my Heavenly Father through it all.

Thoughts and Feelings

It's been a whirlwind these past two weeks. It's been hard to wrap my mind around the fact that my son has brain cancer. It's IMPOSSIBLE to not think about it. I try not to think about the future and its uncertainties, but it's so hard because so many things trigger certain thoughts. For example:

*Music - whether it's a church hymn or a song on the radio, some phrase or word will trigger an emotional reaction with me. Several songs that I've heard lately have talked about loss or death and will cause me to think of what will happen in the future.

*Driving - I will see a sign for funeral homes at a stop light or drive by a cemetery and immediately my thoughts turn to his funeral. When will it be? Who will come? How much time do we have left to spend together? Also... I heard on the radio just last night about different symptoms of various cancers and just broke into tears.

*Other media - I was reading in our church's magazine a talk that my bishop recommended and while flipping through it, stumbled across a talk about a man living with cancer. I've been reading up on things dealing with cancer and different fundraising activities and groups like the University of Iowa's Dance Marathon and I read about some of the children and started bawling as I read about some of the kids in the past tense. They had lost their battle and immediately I thought of Oliver.

*Church - While it gives me comfort to have a knowledge of the gospel, it is very difficult going to church because everything talks about returning to live with Heavenly Father again. I know it's why we are here on earth, but it saddens me to think that Ollie may be gone too soon. Too soon for ME.

*Sayings - "My batteries are DEAD", "I was DYING laughing", "I just DIED" (Playing a video game), "I could have KILLED him", etc. It's amazing to me how many different phrases have the words "dead" or "dying" in them.

It's been really rough because I never know when, where or how strongly my emotions will get to me. I've had a breakdown in a restaurant, in a grocery store, in church. It's very overwhelming to try and process what is going on right now. At those moments I wish I could just open up a trap door or hide under a rock. I just feel eyes upon me and some may know what is going on, but most people don't know. It's hard to try and explain how I feel right now. It changes so much from one minute to the next. One minute I will feel strong and know that it is because of the spirit that I am able to stand and the next minute I am a blubbering mess. I start out each morning praying for strength to get through the day and try to keep it together as much as possible. I pray for peace and hope for the future, but I know that his prognosis is grim. I am trying to prepare myself for the inevitable, but HOW do I??? My step mother said that I can't think of the future, I have to live day to day.

It's been rough because I know that this is bringing back hard memories for my stepmom. Eight years ago my step brother, Alex passed away from a brain tumor. Oliver was only 6 months old. Christmastime is a hard time of year because we found out about Oliver's brain tumor on the 23rd of December and my stepmom found out about Alex's brain tumor near Christmas as well. He lived for a year and passed away on New Year's day and I believe he was only 23. I remember some of the things that he had to deal with as his disease progressed and I am worried that Ollie will have to go through some of the same things. It's hard watching your children go through pain and suffering especially when there is nothing that you can do to ease it. I can pray for him and try to make the best decisions with regard to his medical care, but I personally cannot take this away from him. My heart aches for my stepmom at this time. The day we found out about Oliver I wanted to call her because I knew that she was one of the ONLY people that could say that she knew what I was feeling and that she would know what road I was about to start down. Her and my dad came by the house and talked and cried with me and Ed. I know it was difficult for her to hear and I've been thinking about her so much lately. It meant a lot to my mom for her to come over and support us as well.

It's been overwhelming these past two weeks to see the outpouring of support and love for our entire family. Friends and family who have been supportive always, people who have forgotten grudges, friends of friends, aquaintances, co-workers and perfect strangers have offered up prayers on our behalf. I KNOW that without their prayers, I would not be able to function. Although I've had my breakdowns, I've been able to think clearly most of the time and cling to my spiritual knowledge... my testimony of the plan of my Heavenly Father. I truly feel that this has strengthened my relationship with Him. I've come to Him in constant prayer and have truly 'prayed without ceasing'. I know that I've struggled with forgiveness on some levels and I know that my heart is being softened... that I am being refined at this time. I have been brought to tears when thinking of the future, but I've also been greatly blessed by the spirit to remember where Ollie will be going that he will be taken care of by members of our own family that have gone before us. It brings to light the importance of doing our family history, to get to know who our ancestors are. We've talked to Oliver about who may be there on the other side to meet us whenever we may pass away. We need to know about these people to be able to tell our children who may be there to greet us at that day. It's scary to think about death when you don't know exactly what to expect.

Again... I've been singing some hymns and really listening and pondering the words. I always sing "I Am a Child of God" to my children, but lately the words have had a greater impact on me.

I am a child of God

And He has sent me here.

Has given me an earthly home

With parents kind and dear.

Lead me, guide me, walk beside me

Help me find the way.

Teach me all that I must do

To live with Him someday.

I am a child of God

And so my needs are great.

Help me to understand his words

Before it grows too late.

Lead me, guide me, walk beside me

Help me find the way.

Teach me all that I must do

To live with Him someday.

I am a child of God

Rich blessings are in store.

If I but learn to do his will

I'll live with him once more.

Lead me, guide me, walk beside me

Help me find the way.

Teach me all that I must do

To live with Him someday.

The last part of the song really touched me as I thought to myself, "Have I taught Oliver what he needs to know in order for him to live with Heavenly Father someday? That day possibly coming sooner than I had ever imagined?" Coming to terms with the possible outcomes of this has really brought some important questions to my mind. I've thought more fully about why I am here... why I became a parent... what I'm supposed to be doing... It really makes you take an inventory of your life and makes you look at your priorities and what things you need to change and take more seriously. I want to be an eternal family. I want to live so that I can be with my family forever and be able to raise Oliver in the next life. Life is hard and I don't understand everything. I don't understand why he's going through this, but I do know that someday I will understand. I do know that it is in Heavenly Father's hands. Today at church we sang a hymn about the Lord's will being done and I just lost it. I have to admit that many things make me emotional anyways, but I was just in tears. Our submitting our will to the Father is the ultimate gift that we can give to Him. I need to align my life and refocus so that I can truly be happy and the only way that I am happy is when I'm with my family and my loved ones.

Okay... that's enough time in my mind for tonight. It's late and I am exhausted. I need to have energy to start another week of traveling to and from the hospital...