Thursday, January 28, 2010

"BALD IS BEAUTIFUL" head shaving EXTRAVAGANZA!!!

Tuesday, January 26th, 2010 - "BALD IS BEAUTIFUL" head shaving EXTRAVAGANZA!!!

Tonight we had our photo session at Cooper Image and Design and they were fantastic! I'm so excited to see the finished photos. She said that it would take about a week to get them up online to view and see what we wanted to order. Jaren was being a little stink and not smiling! He just wanted to run around and blow bubbles! They were doing everything they could think of to get him to cooperate but he was just being a 2 year old!

After our pictures we headed over to the church cultural hall to set up for Ollie's party. We announced on Facebook that we were going to be shaving Ollie's head and that people could come to support him and eat pizza afterwards. I didn't expect so many people to come out and even get in on the head shaving action!!! I wanted to make this a fun event for Oliver since he'd been so nervous about losing his hair. Ed and I figured if people shaved their heads along side him, he wouldn't feel so alone. A few of his friends from school also went bald in support of Oliver and we even had family and friends from different states participating!!! There was a head shaving party in Orem, Utah where 12 people got a close shave! People that we didn't even know participated! It's just unreal and overwhelming to see so much support and love just pouring out for Oliver. It's utterly amazing to me.






We set up some chairs and started playing barbershop! The cameras were flashin' while the hair was flyin'!!! I said, "Start your engines!" while I clicked the clippers on to start buzzing off my mom's hair. Ed was cutting Ollie's and Randy was cutting Morgan's hair. There was lots of laughter and giggles as people were getting their hair buzzed. I'm glad that so many people came out to support him and just have a fun night making memories with us!


I bought a large matte for people to sign and write a note to Oliver. I'm going to print off a photo of the night's head shaving participants! The last count of bald heads was OVER 40!!! I'm still in shock! Here is a list of the participants:

Family:
Ollie
Ed (Daddy)
Karen Young (maternal grandmother)
David Palmer (paternal grandfather)
Randy Palmer (uncle)
*Jared Palmer (uncle in California - We watched him cut his hair in real time via iChat)
*Danny Palmer (uncle in Idaho)
**Phineas Palmer (honorary baldie... our 7 week old is already losing his hair!)

School:
Takoda Greenway
Nate Greenway
Nathan Heinz
Nick Heinz
Andrew Petersen
*Tyler Carnes
*Keith Galloway (Oliver's 3rd grade teacher)

Friends of the Family:
Garran Gillespie
*Sam Gillespie
Mike Lujan
Morgan Lasley
Dan Stern
Phil Crouse
Hunter Crouse
Cameron Crouse
Hunter Sinclair
Krista Nai (1/2 baldie... Got a cute new do and donated her hair to "Locks of Love")
Jon Grimm
William Grimm
Andrew Grimm
*Michael Grimm
*Chad Grimm
*Justin Gibbs
*Ben Fagersten
*Scott Frodsham
*Josh Graves
*Matt Horan
*Mike Williams

Orem, Utah off-site head shaving participants!
*Erick Ardmore
*Tamara Ardmore
*Andrew Ardmore
*Samuel Ardmore
*Gracie Ardmore
*Daniel Ardmore
*Sarah Ardmore
*Cameron Berrett
*Benjamin Adams
*Samuel Adams
*John Adams
*Matthew Adams


(* - Participants not in attendance)



Again, THANK YOU to all who came to support Oliver, those who shaved heads and jumped in where we needed you to help clip and shave, those who took photographs and those who stayed to help clean up afterwards! We really appreciated ALL that you did for us tonight! I'm glad there was a good turnout for our little man!!! WE LOVE YOU ALL!!!

Snow Storm & J C Penney Family Portaits

Monday, January 25th, 2010

Today we woke up to find that it had been snowing throughout the night and was still snowing. I had a doctor's appointment with my family doctor and so Ollie and Ed traveled down to Iowa City in the horrible weather. Later on he called and told me that he almost went off the road a few times and had we not had plans he would have definitely stayed overnight down there.

J C Penney had donated a family portrait package to us and we were desperate to get some family photos taken as we had never had professional family pictures before. Cooper Image and Design also gave us some special deals and we had a session set up for the following day, but since Oliver's hair was starting to fall out, we were scrambling to try and get them taken ASAP since it was falling out so quickly and so much. Cooper was closed today so we decided to call Sears and our friend got us in and took our photos. We opted to all wear Iowa Hawkeyes T-shirts and khaki pants, even our little 7 week old was outfitted to match the rest of the family! He got some great shots of the kids individually, some with Oliver and each child and some family shots as well.

We kept our appointment with Cooper for tomorrow evening and decided that we would shave Ollie's hair following the photo shoot. We had originally planned on having a head shaving party on Thursday, but due to him losing it so quickly we had to switch things around. We were sooooooooo grateful to J C Penney Portrait Studio as well as Cooper Image and Design for opening their hearts to us and giving us a gift to treasure for many years. If anyone knows me, they know I LOVE pictures (I've dubbed myself the 'Palmer-azzi" since I always have a camera in hand) and so this REALLY did mean a lot to me to have this done. I don't know how people do it every year! It was hard coordinating outfits and moods!!! :O) THANK YOU again for your generosity!

Hair Today... Gone Tomorrow

Saturday, January 23rd, 2010 - Make*A*Wish

This afternoon the Make*A*Wish people came and met with us. They came bearing gifts for each one of the children. A beanie puppy for Finn, a stuffed elephant for Jaren, a necklace for Eden and a handcrafted kaleidoscope (www.kaleidoscopefactory.com) for Oliver. We sat down at the dinner table while we finished eating lunch and filled out some paperwork while we chatted. They asked what some of Oliver's wishes were and he, like most kids, said that he wanted to go to Disney World, the beach, Sea World, Universal Studios and the Zoo. He would love to meet his favorite comedian, Jim Gaffigan, who shares his love of bacon! HA! He also loves to play baseball and loves watching the Iowa Hawkeyes play football. We both have been learning more about the rules of the game from Ed, my husband, this past year. We also talked about him meeting the prophet and president of our church. He said that he wouldn't know what to say to him if he actually met him though!

The committee members told us a lot about the organization and about Disney World and what it has to offer to the Make*A*Wish families. They told us about a special resort just for the kids with a wish called "Give A Child the World". It sounds absolutely amazing. Before they left they also gave us a special Christmas ornament and I started thinking about if he would be around next Christmas and I suddenly got teary eyed. I thought of how fun this trip will be, but thought that I wished it was on OUR terms and not because he is dealing with a terminal disease. I suddenly had a pit in my stomach as my mind raced. I quickly tried to stop the thoughts in their tracks and began thinking of all of the wonderful memories we will be making in the next several months. We are also planning a family reunion with Ed's side of the family. He is one of eight children and they are all planning on caravaning to Iowa in June over Father's Day weekend and we have many special activities planned including participating in the "Relay for Life" event to raise money and awareness for cancer research. I need to keep my mind focused on the happy events surrounding this horrible situation that we are now placed in. I pray for guidance and strength every time I start to feel weak and unable to bear another thing. I am grateful for your continued thoughts and prayers for myself, Oliver and the rest of my family. We are planning to go in April as we want to go sooner rather than later, hoping that Oliver is feeling well and up to traveling.



Sunday, January 24th, 2010 - Hair coming out by handfuls...

Yesterday Oliver, Eden and I got out hair cut for our upcoming family pictures. I knew that Oliver was thinning in some spots so I filled the stylist in on what was going on with Ollie. It was noticeably thinning in two spots on the back of his head where they were pinpointing the tumor.


Sunday morning it was just a little bit thinner in those same two spots. I helped comb his hair before church and noticed the comb had lots of hairs in it. I thought that my husband used it after his haircut and they were his hairs clogging up the comb, like leftover strays from the haircut. It then dawned on me that it was Oliver's hair starting to come out more easily. During Sunday dinner at my in-laws I noticed he was shedding a bit, but really wasn't ready for what happened later that night. Oliver was sitting on my lap and I touched his head and a little hair came out. He then reached up to his thinning patch and pulled a bit and he had fistfuls of hair!!! We were both shocked! He kept doing it and we both started giggling. I don't know if mine was a nervous giggle, but I thought I'd try and keep it as light as possible since I never know what will trigger a crying spell. After a bit, I told him to stop since we still needed to have our family photos taken and at the time you couldn't tell he had two 2 to 3 inch bald patches on either side of the back of his head when you looked at him straight on. I took a picture of the back of his head to show Ollie and he exclaimed in a high pitched voice, "MAMMA MIA!!!" and started laughing! I was relieved that he was so calm about it since he was so nervous to lose it for so long. We knew that it was a possibility from the beginning that he would lose his hair, but we were shocked that it progressed so quickly! They hadn't even doubled his radiation dose yet! Eden then asked, "What will you do when people make fun of you?" and all the laughter ceased. He then started to cry. I was thinking, "Really? UGH!!" We tried to remind him that daddy was planning on shaving his head with a few other close friends of ours. I just felt so bad for him. I'm sure different scenarios play out in his mind about what kids may say to him. We talked for a bit and started to joke around again. For the most part he's taking it a lot better than I had envisioned.

Friday, January 22, 2010

Faces of DIPG

There are so many others that have had to deal with the realization that their child has DIPG (Diffuse Intrinsic Pontine Glioma) or Pediatric Brainstem Cancer. I've spent several hours reading through some blogs featured at www.DIPG.blogspot.com (some of the kids are featured on the side of this blog) and cried realizing that I may be in that group of those that are mourning the loss of their child. There are so many sweet little faces and I am so saddened to know that so many people have lost their children due to this horrific cancer just this past year. It is a rare form of brain cancer that only affects about 150 - 200 children a year. Although I have shed many tears while reading the stories of these children and the challenges that they faced, I have found peace and comfort through their parents words. I know that your prayers for us are helping sustain us. Some days are easier than others. Right now Ed is down in Iowa City due to an ice storm hitting earlier yesterday. I've been sad tonight thinking about how it would feel if he was truly gone... what that emptiness would feel like. It just rips my heart out. I feel like I haven't really bonded with Finn (my 6 week old) because of all the craziness going on lately. I feel like my thoughts are always elsewhere. I don't feel as sick to my stomach as I used to feel when we first found out, but the thoughts just won't leave my mind lately.

As a parent you try to divide your time equally among your kids, but this has proved extremely difficult lately. I've had several doctor's appointments so Ed and Oliver have ventured down to his radiation treatments alone. Finn and Jaren have been to Grandma and Grandpa's house periodically while Eden is at school most of the time. Lately Finn has been with G&G Palmer because Jaren was vomiting and then Eden had diarrhea. I've also been in quite a bit of pain lately. I FINALLY had an MRI and found out that I have a bulging disc as well as a slight tear in the disc. I had an epidural steroid injection which actually made the pain worse. I have a tens unit that numbs the pain a bit, but doesn't take it away. It's hard to do certain things. It's been very hard to deal with things when you don't feel well. I feel like I'm going to lose my mind. I've never felt anxiety until last week. I seriously felt like my body couldn't handle the extreme emotions that I was dealing with. *sigh* I just don't know how I'm gonna handle this...

Wednesday, January 20, 2010

Not A Good Day...

Tuesday, January 19, 2010 -

I had my 6 week postpartum check up this morning at 10:50 am and so I stayed home and ran errands and cleaned all day long. Ed said that today was NOT a good day. The first thing he said to me after he called me was that they almost had to admit Oliver to the hospital down there. He told me that Ollie had thrown up twice in the car on the way down. The first time Ed mopped it up with HIS shirt and the second time with OLLIE'S shirt. So I'm picturing them walking around topless at the hospital!!! I suppose they had their coats on to maintain some level of modesty in public!!! I guess now we know to bring some old towels, a puke bucket and a change of clothes with us. He then told me that he had an asthma attack in the hospital before he went in for his radiation treatment. Poor little man! There are lots of triggers for an asthma attack. The cold doesn't help and his allergies may be flaring. He's grown out of his wheat and egg allergies and is still borderline allergic to dairy and allergic to peanuts and tree nuts. We've really been watching his dairy intake because we know that this aggravates his asthma. Poor little guy.

When they returned home, Oliver said that he didn't feel good and I gave him a hug and he started to cry. I just loved him and stroked his hair for a few minutes. He is going through so much. He's sooooooo attached to Ed right now so it's rare that he comes to me seeking comfort. I'll take whatever I can get. He still climbs up on my lap to play his I-pod Touch or to read books. I had to laugh the other night because he curled up on my good friend Meghan's lap while he played video games on his I-pod. I know that his personality is changing in some ways, but I'm glad that he still likes to cuddle. I love to cuddle with my Ollie! I felt so bad for Ed because later on Jaren, our 2 1/2 year old puked all over him as well. I hope it's just a 24 hour bug! I feel so bad for ALL of the poor boys in my life, including my husband!



Wednesday, January 20, 2010 - Ice Storm and the Ronald McDonald House

I stayed home again today because Jaren was still throwing up. Ed and Ollie drove down to Iowa City to stay overnight because of the ice storm that was coming our way. It actually started freezing rain BEFORE they left. He told me that he drove about 35 mph the whole way down and almost went off the road a couple of times. They are staying at the Ronald McDonald House tonight so he will actually be saving a lot of money. It's only $15 a night as opposed to about $70 in a hotel. He said that they played pool, ping pong and air hockey and they were just hanging out. It's nice that he can spend some one-on-one time with Oliver.

He is about halfway through with his radiation treatments. They will be doubling the dosage and so we will be expecting Ollie to lose some hair shortly. It's up to him if he wants to shave his head or not. I know that he's very nervous about it. Ed said he would do it and his little friend, Nicholas, also said that he wants to shave his head to support him as well. He will be having an MRI sometime next week to see if the tumor has shrunk at all. This will be the ONLY time he has radiation. We will keep you posted! Thanks again for all of your prayers for Oliver's health and strength as well as for our whole family.

Sunday, January 17, 2010

Make Yourself At Home, Ollie!!!

I just wanted to post something funny that happened the other day down in Iowa City. Ollie usually has to use the bathroom right after we get there, before he goes in for his radiation treatment every day. One morning took our familiar trek downstairs to the radiation therapy area and walked to the waiting area. Ed and I walked by the front desk and Ollie continued to walk down the short hall to the restroom. All of the sudden I heard a noise like someone was pouring a gallon of water and I looked toward the restrooms and noticed that both of the doors were W-I-D-E open! Ollie was just doin' his business right there with the door open! We both burst out laughing and Ed walked over to the restroom and closed the door for him!

He's been very lucky so far to still be as active as he is. I know that it's still the beginning of our journey and that we will just continue to take each day as it comes. He's such a good kid and is really keeping a positive attitude. We are planning some family activities including a trip to the Omaha Zoo when the weather is nicer. He wants to go to a zoo and see the animals in the worst way! We just received some information in the mail on the *Make-A-Wish program the other day. He said that he wanted to travel by train to Disney World in Florida. We'll see how that pans out. I just hope he feels up to traveling whenever we can go.

He still is anxious about losing his hair. He just cries every time he thinks about it. I want to get a nice family picture since we have a new little member in our family and I want to get it taken before he loses his hair. A few nights ago he was crying and said through his tears, "I don't wanna look like a crackhead!" I just started laughing and he did as well! We HAVE to keep the laughter in our family or we just wouldn't be able to get through the day. Yesterday when he was talking about being bald we asked him why he was so worried about it and he said that when he was a baby he was bald and he didn't like it! Again... we all had a good chuckle! I went to the craft store yesterday and got Oliver a plain white baseball cap to wear when he starts losing his hair. I was going to go to his classroom at school and have each one of them sign it and then I was going to give it to him as a surprise. I also bought him some handkerchiefs to wear on his head, so he could be just like his Uncle Chad! We've heard that if you shave your head before you lose it then it's easier to deal with because you did it on YOUR terms and not the DISEASE'S terms. Ed said that Ollie could shave his head and then Ed would turn around and shave Ollie's. I'm sure we'll have some fun and interesting pictures to share after that! My mom even said that she would shave her head to support him! As of today, he still has his hair. We've noticed a slight spot where it's a little thin, but it could just be some crazy bed head!

I've got a few ideas to make or do for Oliver:

*Baseball Cap - Again, I bought a plain white baseball cap for 2 bucks and an iron-on mini baseball and I will have his classmates sign it.

*My good friend took a class picture of Ollie's class and we'll get that printed and matted. One the matte I will have his classmates sign that as well and then we'll frame it for him. Maybe we'll set it up by him when my mom is tutoring him these next few weeks! :O)

*I got some red buckets with hearts on them to place in each of the three 3rd grade rooms for the students to put mail or drawings in for Oliver while he's absent.

*I had thought of making a necklace out of beads for Ollie as well. I would let each student pick a bead and string it on, symbolizing each one of the students in his class.

*My friend is making a book with his classmates photos and nice words of comfort and she's going to surprise him with it.

*Another friend wants to make a quilt with pictures of Oliver all over it for when he's in the hospital to remind him of happy times.

He may be getting an MRI sometime soon as his radiation treatments are about halfway done to see if the tumor has shrunk any. He also may be losing more hair soon as the dosage will double the remaining three weeks. We will just take it day by day. We are going to talk with the pediatric oncologist again about putting him on a low dose chemotherapy. I'm so worried about the side effects of these drugs. As a parent you are always worried about not doing enough for your child. I just want to make the right decision. Anyways... that is where we are at right now. Time will tell, I suppose.

Friday, January 15, 2010

"Sunday Will Come"

"Sunday Will Come" - Elder Joseph B. Wirthlin

Thursday, January 14, 2010

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.

"Be Still, My Soul"

A church hymn has been running through my mind a lot these past few weeks and has given me a great deal of peace and comfort.


"Be Still, My Soul"

Be still, my soul: The Lord is on thy side;
With patience bear thy cross of grief or pain.
Leave to thy God to order and provide;
In ev-ry change he faithful will remain.
Be still, my soul: Thy best, thy heav'nly Friend
Thru thorny ways leads to a joyful end.

Be still, my soul: Thy God doth undertake
To guide the future as he has the past.
Thy hope, thy confidence let nothing shake;
All now mysterious shall be bright at last.
Be still, my soul: The waves and winds still know
His voice who ruled them while he dwelt below.

Be still, my soul: The hour is hast'ning on
When we shall be forever with the Lord,
When disappointment, grief, and fear are gone,
Sorrow forgot, love's purest joys restored.
Be still, my soul: When change and tears are past,
All safe and blessed we shall meet at last.

The Anchor

While down in I.C. last week, my aunt bought me a necklace with an anchor charm on it and on the gift bag she wrote the words from a Ray Boltz song:

The Anchor Holds

I have journeyed
Through the long, dark night
Out on the open sea
By faith alone
Sight unknown
And yet His eyes were watching me.
The anchor holds
Though the ship is battered
The anchor holds
Though the sails are torn
I have fallen on my knees
As I faced the raging seas.
The anchor holds
In spite of the storm
It was in the night
Through the storms of my life
Oh, that's where God proved
His love to me.


Needless to say... I was brought to tears. Thanks, Aunt Sue.

Steroids

Wednesday, January 6, 2010 - Saturday, January 9, 2010

It's been a crazy few weeks I will say. We've been busy constantly and it feels like it hasn't let up a bit! Last week Ed and I took ALL four kids with us down to Iowa City to stay in a hotel for a few nights. Oliver had his treatments daily at 12:45 pm and we decided that since there was supposed to be a huge snowstorm, we left Wednesday morning and didn't get back until Saturday evening. My grandma was having a valve replacement (open heart surgery) that Friday and since she hadn't seen the newest little man of the family, Phineas, we decided to take all of the kiddos with us! We did some shopping for some snacks and swimsuits, since the kids wanted to swim and we were very glad we went down early because the roads were HORRIBLE!!

We got to visit with my grandparents, my brothers, my mom and later my aunt and cousin as well. It was really nice to be with family. His treatments have been going really well. One thing that really concerned us was that he was having troubles swallowing. Whenever he'd eat, he'd choke and start coughing. Dr. Menezes had said during our very first appointment that Oliver had absolutely no gag reflex. He stuck a tongue depressor all the way back into his throat and he did nothing. Every time he'd eat we would tell him to take smaller bites, drink water and not goof around while he's eating. It's scary to see him start to choke on whatever he's eating.

On Thursday evening he said that he was actually having troubles swallowing his saliva. Yeeeeaaah... kinda scary! So we talked with his radiation doctor about what we can do for him. He didn't want to start him so soon on steroids because of all the possible side effects of it. We also told him that his left side is getting weaker as the tumor is pressing more on the right side of his brain. Because of the tumor in his brainstem, it is twice the size it should be which is causing pressure on certain areas of his brain. It's like his body is forgetting how to swallow right now. He said that it is devastating because all of the vitals are run from this part of the brain. As the tumor continues to grow it will begin to affect his heart and lung function. We are doing radiation with hopes of shrinking the tumor.

We still don't know what to do about chemotherapy as there is no real benefit to it with this type of tumor. It won't prolong his life and it would just make his last months here unbearable as he'll be very sick. Obviously different people react to the medications and therapy differently, but we know the possibilities of what it can do to him and I just can't decide what to do. It's such a difficult decision because we want to do all we can do for him. I know several people have asked us about St. Jude's Children's hospital, but we don't want to have to relocate elsewhere because we have other children, Ed HAS to continue to work, we want to stay near family and the biggest thing Ed said to me is that if Heavenly Father wants to heal him, he can heal him whether or not we are here or halfway across the world. We want to keep things as normal as possible for him and that is why we are traveling to and from Iowa City on a daily basis. Our other children need things to remain as normal as possible as well. We are ALL in this together and ALL of our lives are changing whether we are ready to face it or not. You never know what you will do or how you will think or feel until you are face to face with certain situations.

Anyways, so his swallowing is compromised, he's weaker on his left side AND his right eye seems to be shifting closer inward. If it was just one of those symptoms, he wouldn't have placed him on the steroid so soon, but since he's having several neurological difficulties he said we should probably start him on a low dose and discontinue his anti-nausea medicine. We did for a few days, but he was still nauseas so he's on both of them now. He may have an increase in aggression, acne, change of personality, restlessness, hyperactivity, insatiable appetite and puffiness in his face almost to the point where he may be unrecognizable. *Sigh* What do you do??? We just have to try and make the best decisions that we can for him and hope for the best.

On Thursday evening, before Oliver told me about his swallowing, I was online researching some things that the social worker had told us about. He told us about Dance Marathon and all that they do for children with cancer. There are a couple of summer camps they offer as well. One camp is for the whole family to go to, another is for just Oliver and one Eden can go to as a sibling of a cancer patient. I don't know if they will go on their own, but we are excited to find out more about it since Ollie loves going camping! I was reading their website and stumbled across some biographies of the children they had helped and I came across one that was in the past tense because he had passed away and I just started crying. Then I clicked on a link called 'Dancing in Our Hearts' and it was a huge list of all of the children who had lost their battle with cancer and I just envisioned Oliver's name to be on their in a short amount of time and I just lost it. I was a mess. I was in the hotel room on the bed just sobbing. I called a close friend and talked through some of my feelings. I feel so out of control, like my physical body just can't take the intense emotions that I'm feeling right now.

Friday night we went out to dinner with the whole family down in Iowa City and as we got up to leave, Ed mouthed the words, "Oliver just asked me 'Is death quick?'." I was completely shocked and saddened. We got into the van and I heard him ask that same question again. Ed told him that we'd talk about it when we got back to the hotel. HOW does a parent answer that question? It just broke my heart to know that he's thinking about death already. It may be because his great grandma was going in for surgery, but who knows. I feel like he's being prepared for death. A few days earlier he had come up to Ed and I and was crying and said that he won't be able to color pictures when he's dead. That he won't be able to cuddle with us anymore. Again... I was dumbfounded to hear these comments just out of the blue. From out of nowhere. It sickens me to think that death is always on the forefront of his mind. Ed told him about how Jesus cuddled with his apostles and how they were grown men, but still showed that love toward one another in that same way. Ollie said that he won't be able to cuddle when he gets older and then he said that he doesn't want to grow up and get wrinkly. We laughed a bit at that and he giggled a little as well. I just don't know how to answer some of his questions. They just leave me speechless. I've relied a lot on Ed's words and his knowledge of the gospel and the plan of salvation. I can only tell him what I know and that Heavenly Father knows all we are going through and will ever go through in this life as well as in the next. Ed assured him that there will be family waiting to welcome him to the other side when he passes away... however old he happens to be. He talked privately with Oliver in the room and seemed to put his mind at ease for the moment. Please keep praying for strength and peace for ALL of us at this time, especially Oliver. I pray that he will be able to handle all that comes to him during these next few weeks and months. This is so hard...

Sunday, January 10, 2010

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...

Thursday, January 7, 2010

New Year's Eve Marks Ollie's First Treatment

*Thursday, December 31st, 2009 - Ollie's First Radiation Treatment

Oliver was very nervous and timid for his first radiation treatment. He was crying a little bit because he was scared. The nurses had him climb up onto the table and lay back and they told him that they would go really slow and if there was anything that he was uncomfortable with or didn't like, he needed to tell them so that they could see if they could do anything about it. When they put the mask on his face, he didn't say anything, but his body language told us that he was uncomfortable so Dolly asked Ollie if he wanted her to cut out some eye holes and he said yes. She marked out the eye holes with a marker while the mask was still on his face then took it off and cut them out and taped around the holes. He liked that alot better and Dolly told him that was exactly how she wanted him to be, if he wanted something done, she could help him. They then put his mouthpiece in and zeroed in his position and then I left the room and read to him out of The Boxcar Children and I didn't even make it through one chapter... it was so fast. They said, "We're done" and I said, "Holy Cow, Oliver... we're done already! That was so fast I didn't even finish one chapter!" I went back into the room where Oliver was and he was getting down off of the table. All of the nurses were praising how well he did and Oliver was just beaming. They took him over to a cupboard where they had nice, big toys and told him that he could pick out anything that he wanted. He picked out an Incredible Hulk toy that was about a foot tall. He was smiling and said, "That was easy" as we walked out of the hospital.

On the drive home, he was fine and we stopped and ate at McDonald's. When we got home about an hour and a half later, he told me that he had a really bad headache and felt sick. I gave him some Tylenol and he laid on my lap and fell asleep. Jared, my brother, my dad and I gave him a blessing (a special prayer) and then we moved him to the couch to rest. Jared was rubbing Ollie's head and then Stacy got him a rice sock to lay on his head which Ollie said helped a bit. I went with Jared to fill an anti-nausea med from the doctor after talking with him on the phone about Oliver's condition. Later on that night he was sitting on the toilet and started throwing up. We decided not to go to my parents house to celebrate the New Year.

*Posted by Ed



*Friday, January 1, 2010 - 2nd Radiation Treatment

I got to bed at 3 am and was up again at 5 am and on the road to Iowa City for his second treatment by 6. Ollie played video games on his I-pod touch the whole way down! Natalie, one of the radiation technicians, was there on a morning that the hospital was technically closed for the holiday and unlocked the doors for Oliver to get this treatment. There was also a female resident there this morning as well. He asked me if it would be the same thing and I said, "Yes. It will be the same thing every time." He was excited and relieved. Today I read "Tales of a Fourth Grade Nothing" by Judy Blume and again I didn't make it through one chapter because he was done so quickly. Today he picked out an Iron Man mask and disc shooter.

Ollie and I stayed down in Iowa City for several hours waiting for the rest of the family to come down there. Oliver and I decided to see "Alvin and the Chipmunks: The Squeakwell". Oliver loved it and I slept through it. Stacy drove down with her mom, brother, Chad and Eden and we met up with them at the Coralridge Mall right after the movie had ended. Stacy, Chad, Oliver and Eden decided to go ice skating while waiting for my brother, Jared and his family to get there. It was their last night visiting us from California so we decided to get a hotel for the night.

*Posted by Ed



Saturday, January 2nd, 2010 - 3rd Radiation Treatment

Today was my first time going with Ed and Oliver to his treatment. Natalie was there again this morning to open the door for him to have his radiation. I still can't believe that they did that for us. We walked down the hall and Oliver showed me how he hopped up onto the table and got all of his stuff on and in place. We walked out of the room and then Ed sat at the table where he read into a microphone. We sat there and I could see Oliver on three separate monitors. He just laid there so still and did so well! I was so proud of him.

Wednesday, January 6, 2010

No Chemotherapy Recommended

Tuesday, December 29th, 2009 -

Today we traveled to UIHC again to meet with Dr. El-Sheik, the pediatric oncologist to talk about the possibility of chemotherapy. He had pretty much told us what we had researched online about how there was no measurable benefit for chemotherapy at this time. He said that maybe later on down the road he may have some to stave off some of the symptoms that he may be having, but as of right now he didn't recommend it. We will definitely pray about it. We obviously want to make the right decisions and we want Oliver to be as comfortable as possible throughout this ordeal.

We then went to the Radiation Department to get Oliver's radiation mask, pillow and mouthpiece formfitted to him to get it all set and ready to go for his future radiation treatments. We met Dolly, who is the cheif radiation therapist I believe and she was great with Oliver. She explained that we needed to get him a mouthpiece to wear during his treatments. He even got to help construct it. She told him that it was kind of like what football players wear in their mouths. It was a clear plastic shell which she poured some green paste into. He placed it into his mouth for about three minutes which made the impression of his teeth and then it set a few minutes later. He helped to attach some more pieces to it which he wore during his CT scan and subsequent radiation treatments. She did a great job explaining everything to Ollie before it happened. (I wish I had my camera to take pictures of him building it! He did such a great job!)

After a bit, we met with Dr. Buatti again to discuss his radiation therapy. We would begin treatments on Thursday morning at 11 am. The hospital was going to be closed on Friday and Saturday for the holiday (New Year's) but a technician would be there to give Oliver his treatment because they wanted to get him started right away. How nice is that!? So he would have his treatments this week on Thursday (31st) at 11 am, Friday (1st) at 8 am and Saturday (2nd) at 7:30 am. Ed had told him what Dr. El-Sheik had said about chemotherapy and Ed asked Dr. Buatti what he would do if it was his child and he said that he would do radiation with a low dose chemotherapy. So, we will see about that later on.

We then waited in a family waiting area for a while and Ed read to him. Ed nodded off for a few minutes and so Bry took over reading a book about fish to him while I layed on the couch to rest my eyes for awhile. (Bry and Oliver are fishing buddies and I fully expect them to go on some excursions together this summer!)

Oliver went to get his CT scan and got his pillow shaped to his head and then they made the mesh mask. They get it wet and while it is still pliable they mold it to his face so it fits perfectly. He was very nervous for this as I would be if I were a kid, but he did GREAT! It helped that the nurses were all so fantastic with him! He then went to get his MRI done while Bry and I waited for them to get finished in the family room. Oliver has wanted Ed to be with him as much as possible and I've noticed his attachment to him more and more, even at home. He loves his Papa so much, which he should because he's got THE BEST daddy a kid could ask for! When he came back in, the nurse handed me a baggie with some beads in it. They are called "Beads for Bravery" and with different things the kids undergo, they get a corresponding bead to place on a necklace or bracelet. So, today he got a green sphere for the IV (contrast), a small smiling sun for the MRI and a cat for the CT scan. What a neat idea. It's those little things like that that help take a kids mind off of some things... ya know? Very cool. He did GREAT today!!!

Iowa City Neurosurgeon Appointment

Monday, December 28, 2009 -

Today we (Ed, myself, Oliver, Jared - Ed's brother, Emily - Sister in law, Natalie - niece, Addison - niece -- they were visiting from California after they had heard the news...) met my mom and two brothers, Bryan and Chad down in Iowa City at the University of Iowa Hospital and Clinics (UIHC) to meet with Dr. Menezes, a neurosurgeon. I had heard from a friend that he is one of the best in the nation and so I was hopeful after we had talked. Although I expected more of the same difficult news, it still didn't soften the blow to hear it again and to hear it from a specialist.

A nurse had checked Oliver out for awhile before the doctor had come in. He was looking at the MRI that we had brought down from Waterloo. The door was open and the first thing I noticed when I saw the doctor coming into the room was his eyes. It had looked like he'd been crying. A pain just shot through my heart, not wanting to hear what he had to tell us. Before he talked with Ed and I, he introduced himself to Oliver and did many of the same things with Ollie asking him to perform several of the same tasks. When he was finished he asked Oliver to leave the room so he could talk with Ed, myself, my oldest brother, Bryan and my mom.

He showed us the MRI results and explained that Ollie has Diffuse Pontine Glioma or Pediatric Brainstem Cancer. He showed us several scans of Ollie's brain and explained the significance of each one. The most devastating news was that it is inoperable because of where it is located and because it is 'diffuse' meaning that it's all over in the brain and impossible to be able to operate and remove it. His brain stem is twice the size it should be which is causing various problems, such as double vision which was the reason for alarm in the first place. He said that it was difficult because the brain stem is where all the vital functions take place. He told us that without treatment of any kind he would be gone in three months time. That just took my breath away. With treatment 9 - 15 months was more likely. Although this is what we had read online and what Ed confirmed with our pediatrician on the phone, it was still shocking to hear and unbelieveable. NOTHING can prepare you to hear those words. Absolutely NOTHING. It's like someone just knocked the wind out of me. I kept trying to repeat "You have to be strong. You have to be strong" over and over in my head, but I just burst out in tears.

Treatment options are primarily radiation in hopes to shrink the tumor and relieve pressure of brain fluid and chemotherapy. Many articles and research has shown that there isn't much benefit to having chemo at this time as it doesn't increase the survival rate and it decreases the quality of life as it makes them so sick. Oliver's health is already compromised as he has asthma and allergies that he deals with on a daily basis. We can only do what we can and pray for guidance to make the best choices we can for Oliver and continue to fast and pray for healing to come and for the tumor to shrink.

Ed and I were concerned about how to approach the topic of cancer and so we asked his professional opinion. We asked him point blank what we should tell him. He said don't say the "c-word" (cancer) or the "t-word" (tumor) as they immediately cause fear. He told us to tell him that he's sick and that he needs treatment (radiation) and possibly medicine (chemotherapy) in order to help him get better. Since he is the specialist and deals with having to break this kind of news to people, including parents, we figured we would take his advice and tread carefully on the subject. He told us to be honest with him if he asks us questions, but to not offer too much unnecessarily causing anxiety or fear. He said that we can do all we can for him, but ultimately it's in someone else's hands... as we very much agree with.

We then were introduced to Dr. Buatti, the radiation specialist, and talked with him about his treatments and set up a time to meet with him again the following day as well as with the Pediatric Oncologist to discuss what he thought about chemotherapy for Oliver. The doctors left and I just broke down crying again and had to compose myself before going out to the waiting room to see Oliver. I just couldn't believe how hard it would be to work there and to have to give people, other parents this type of devastating news. *sigh*

Oliver was crying in the waiting room and it was so sweet as I watched his five year old cousin, Natalie, walk over to him and wipe off a tear with her winter coat sleeve. Those moments just melt my heart as I see the love and tenderness that children show towards one another. It was very helpful to have family there with us for support. I am grateful for their love and I hope they can feel my love for them as well as Oliver's love for them. I am blessed to know that our relationships that we nurture here in this life will continue as we pass on to the next life. That comforts my heart so much as I think of the future.

Saturday, January 2, 2010

Worst Day of My Life - Ollie's MRI

Ollie's MRI was originally scheduled for Monday the 21st of December, but he had not been lucky enough to avoid the stomach flu that the rest of us had gotten and was vomiting that morning so we rescheduled it for two days later.

Wednesday, December 23, 2009 - MRI at Covenant hospital.

This morning Ed, my mom and I took Oliver to get his MRI. He was still nervous to get it, he cried in Dr. Suh's office because he was scared when he heard the first talk of it. He also didn't want to have his blood drawn. Earlier we had shown him a video of how the machine would look and sound in order to try and calm his fears, but he was still scared. He wanted Ed to go into the room with him and he held his hand the whole time. He had to get an IV for contrast and got his blood drawn as well, in order to rule out a blood disorder. Before he went in for his MRI, the MRI technician asked him what kind of music he liked as he could wear some headphones during the MRI. He thought for a minute and said, "Our house in the middle of our street." Which is a song from the 80's! He's such a funny kid! Anyways... my mom and I sat in a waiting room around the corner for about 30 - 45 minutes. We heard him say ouch once, but didn't hear him cry at all. He was a trooper! They came back in when it was finished and we decided to head to Village Inn for breakfast.

We were almost finished with breakfast so my mom had taken Oliver to the restroom, when Ed's cell phone rang. It was the double vision specialist from Marshalltown, Dr. Suh, with the news that would devastate any parent. I could only hear Ed's side of the conversation, but read the little scribblings on a piece of paper that he wrote throughout the conversation such as "Inoperable brain tumor", "Pontine Glioma", "Center of his brain". I was in shock. I'm still in shock over two weeks later. I just started to cry. Ed was still on the phone when my mom and Oliver came back to the table. I just mouthed the words 'brain tumor' to her and she couldn't believe it. We couldn't talk about it with Ollie right there, but we finished quickly and went to the car. I cried quietly as we dropped off my mom and Oliver. She told us that he could stay with her and play for the rest of the day. Ed's parents had the rest of the kids and so Ed and I just drove home.

Ed searched 'Pontine Glioma' as soon as we got home and the first thing he found was a blog about an 18 month old where the prognosis was very grim. We realized then and there how serious his diagnosis was and just both collapsed in tears on the bed.

I can't put into words what that feeling felt like. I'm still trying to wrap my mind around it. I've never cried so hard in my life. You never think that this will happen to you. I thought of all of the stories that I've heard of people losing their children and I remember thinking, "I could never be strong enough to deal with that." I can't believe that this is happening, but I know I don't have a choice. I HAVE to be strong enough because there is no other option. I HAVE to be strong enough to deal with this and pray and do all I can to help him through this, whatever the outcome may be. I HAVE to be strong enough to accept the Father's will. Everything happens in the Lord's time. I am so grateful to have a knowledge of the gospel and faith that all will be made perfect someday and although I don't understand everything now, I will someday and until then I can feel the peace and love that He offers to His children.

After a little while Ollie's pediatrician called and talked to Ed and he told Ed that he talked with either Dr. Suh or the pediatric radiologist who had read the MRI. I'm not sure if he talked to the pediatric neurologist as well or not. During the conversation we were told to meet with a Dr. Menezes, the pediatric neurologist down in Iowa City at the University of Iowa Hospital and Clinic (UIHC). Ed asked about the time frame which he had seen online and our doctor told us that sounded correct. We were devastated. I couldn't look at a picture of Oliver without just bawling. I couldn't get it together... I just couldn't stop crying. I can't even explain how it felt. You can't imagine until it actually happens to you.
The kids all came home and I had the worst crying headache that I'd ever had in my life and went to bed at like 7:30 pm. The rest of the day is just a blur in my memory. I can't even remember what we had said to the kids or when we actually told him that he was sick. I think we told him that he was sick the following day. We didn't know how to tell him that he actually had cancer. It's such a scary word for kids to hear and understand.
***It's been two weeks now and my head still feels like it's spinning so I'm working with my fuzzy memory at the moment trying to update people on what's been going on these last few weeks. I'm currently writing from the hotel room down in Iowa City (January 6th, 2010).