MRI -- November 2, 2011

Tuesday, November 2, 2011

Early this morning Oliver had his regularly scheduled MRI down in Iowa City. We traveled down last night and took Jaren and Oliver to see 'Puss in Boots', which they liked. We all got up at around 6 am and headed to the hospital with my mom and brother, Bryan. We always have the MRI first then meet with Dr. Buatti to discuss any symptoms that Oliver is having as well as the scan. It seemed like this MRI took a particularly long time. Ed went in the room with Oliver as he usually does while I waited in the waiting room with my mom, brother and Captain America (Jaren -- we got the costume the night before for 50% off and he LOVED it! -- it's the little things!)

After his scan we walked to radiology where we were led to a room, as usual and waited to hear from the doctor. A resident came in and did some strength and sight tests with Oliver and asked us some questions about medication and the symptoms that he was experiencing. Then we talked with Dr. Buatti. He told us that the tumor had grown. My mom took Oliver out into the children's waiting area as we had some other questions for the doctor.

I asked how much it had grown and he showed us the scan. You could see that it had gotten bigger. It doesn't take much growth to start causing problems as there isn't a whole lot of extra space inside the brain to take up. I asked about reirradiation, something that some DIPG kids have undergone recently, but he didn't feel comfortable doing it because the growth was in the exact same area as it was before and he didn't feel it would help. I knew it wasn't a cure, but longed for anything to provide more time, however I don't want to prolong this journey if there is any pain or discomfort. I also asked the dreaded question... "How long do you thing he has?" Obviously no one knows. He said maybe 6 - 8 weeks. Could it be 4 months? Could it be 3 weeks? It could be any time now. When he started to say '6 t0 8......' I thought he was going to say 'months'.... not 'weeks'. It still doesn't seem real. I also asked if he sees many patients with DIPG and he said a few every year. I wish I knew who they were so we could gain support and strength from one another.

We then talked with the pediatric oncology nurse practitioner who is going to be calling Hospice to set a meeting up for us. We talked with the social worker down there who has been really nice throughout this journey. We also asked about how to donate his tumor for further research. We still need to pray and talk more about this. I just wanted to discuss our options before things get too emotional for us. It doesn't hurt to find out. There HAS TO BE more research done.

We always talk with the radiation techs whenever we are down there for an appointment and I asked Dolly, a woman that helped him with his radiation mask and stuff, if she could find Jen and Mike for us because Oliver was down in the children's waiting area. Oliver was taking a nap with Uncle Bryan on some giant pillows down there so we woke him up so he could see them before we left. They have been so nice to us during this journey. They ALL have. Jenn talked with us a bit and then Mike came down the hall. We talked a bit and hugged and teared up. It's hard to keep it together sometimes.

After they left we talked with a child life specialist who gave us a packet of books to read to the kids about death and grief. We talked about making memories and keepsakes for the kids and even took a fingerprint of Oliver to make into a necklace. I'm worried most about Eden because she's known Oliver the longest (they are 17 months apart) and is the oldest of the other three. She 'gets' more of what is going on. She's been seeing her sweet school counselor, who tutored Ollie last year, since Oliver's diagnosis. I may have her start going to a sibling support group once a month down in Iowa City as well. She's been starting to become pen pals with other kids that have siblings that are battling or have passed away from DIPG. I've read a bit about how children of different ages deal with grief differently. Eight year olds think the world revolves around them and what is happening that day. Four year olds may ask where their sibling is over and over again. I just pray that Phineas will know Ollie through us. I hope and pray that we will have the strength to get through this and be able to give all of our kids what they need. It's so overwhelming.

OVERWHELMED... this describes me these past two years. EXHAUSTED... I'm sure I will know this even more after this leg of the journey is over. I've heard this part is so difficult. I've already felt stretched more than I can imagine... in every single way... mentally, emotionally, spiritually, physically. At times I feel like a wreck just holding on by a thread. I can only do the best that I can do. I keep thinking to myself... don't try and run faster than you have strength. I'm trying to pack a lifetime of memories into two years of my child's life. I think we need to slow down and just enjoy what time we have left. You just want to do all you can to make them happy... to make all of their dreams come true. I think there is a Killers concert in Chicago sometime this month. The kids are always singing 'Human' which I know I have videotaped several times! Brandon Flowers, the lead singer, is a mormon or LDS, just like us and his mother unfortunately passed away a few years ago from a brain tumor. I would have LOVED for him to meet him. One of his other favorite songs by them is 'Don't Shoot Me Santa Claus'. I'm still going to try and find some tickets. He's never been to a concert before and it would be so cool to see them in person!! There are just so many things that as I parent I would love to see him be able to do, people that he would love to meet. We watch Jimmy Fallon most nights together and Oliver LOVES all the games that he plays on there. We are always busting up laughing. He loves Ninja Pinata, which is one of my favorites as well! I know he'd love to meet John Cena, who actually sent him an autographed picture and whose motto is 'Never Give Up'... how fitting for a young child dealing with the biggest test of their life. I would love for him to meet Brian Regan and Jim Gaffigan and tell them that we listed to their shows over and over every ride to and from all of his radiation appointments and laughed and laughed until we couldn't laugh anymore. Ollie had all their jokes memorized at one point in time!!! It was so fun to hear him crackin' jokes and then sneakin' in a smile afterwards. I just love his dimples when he smiles.... just love 'em. Okay... now I'm rambling.

After we left we headed for someplace to eat. Oliver wanted somewhere with a pool table and we usually go to Old Chicago but they don't have one anymore so he wanted to go to Buffalo Wild Wings because of the trivia games you can play at the table versus other teams throughout the restaurant. So if you see a team by the name of 'Spooky' you know they are there playing!! :O) He ordered some cheese sticks and was in heaven eating those. We had fun with Grandma and Uncle Bryan there, too. After lunch, Ollie rode home with them so that Ed and I could make some important phone calls to family and friends that we didn't want Oliver to have to over hear. The whole way home I would be okay one minute and bawling... 'the ugly cry'... the next minute. My eyes are burning while I'm typing all of this. Life just doesn't seem real right now. Sometimes I feel okay, sometimes I feel like I'm completely on the edge and bawl at the drop of a hat. At least Jaren was in the car, belting out "Human" for us to make us laugh and then cry because it's one of Ollie's favorite songs and made my thoughts turn back to him and what is taking over his body. I'm just at a loss.

It was raining the whole way back home, how fitting that even the heavens are weeping. Hospice called while we were just getting back into town and we set up a time to meet with them in our home on Friday at 11 am. I suppose we will learn more later. My biggest priority is dealing with any pain Oliver might be dealing with and that we can all be together as a family at this time. I need all the prayers I can get. Please grant me patience, understanding, serenity, peace, strength, faith, and an increase in love and hope.

We talked about funeral arrangements and will be looking into those things the next couple of days. Headstones, cemetery plots, funeral home and such. I also am looking into different memory making activities or crafts that we could do together or individually as a family to honor and remember Oliver if the time comes where he won't be here. I got several things at Micheal's to do handprints and such. We'll be working on those soon!

He was crying tonight when we were talking about how he touches peoples lives and he said that he's only touched one person's life... a little boy at McDonalds a few years ago, Oliver gave him his toy that the boy wanted. Ollie said it made him feel special inside because he was thinking of others. It made me so sad though to think that he really doesn't feel like he's touched people's lives. I want people to think of how he has touched their lives and if you would like to write him or us a letter telling him how he's touched your life or changed it, please send it to us at:

Oliver Palmer

417 Oaklawn Avenue
Waterloo, IA 50701

I think he could really use that knowledge right now. I hope that he'll get some mail and see that he's touched people that he's never even met! He is such a sweet, compassionate and loving kid and always has been.

We talked with him about his fears and Ed told him more about why we are here and what this life is for. I think that eased his fears a bit. I can't imagine being a 10 year old kid and knowing that you were going to die in the near future. It makes me queasy to even think about. He's so brave and strong and NEVER EVER complains about any pain or anything. I need to take some lessons from that kid... we all do.

Anyways... I hope that he will get some upbeat letters soon to show him that he is in fact loved and that he has 'TOUCHED PEOPLES LIVES".

Thank you all so much for the continued prayers that have been offered in our behalf and keeping Oliver so close to your hearts. He is always continuing to amaze me. We'll keep everyone posted as to how he's doing. I still have a bunch to blog about from the last two months of craziness so don't forget to scroll down as I play catch up. Thanks again...... <3

Ollie's MRI - August 31st

August 31, 2011

Today we went down to Iowa City for Oliver's MRI that was originally scheduled for the 14th of September. Since some symptoms were reappearing and getting worse we asked for it to be moved up. His left eye is the eye he always wore his patch on. Recently he hasn't been wanting to wear his eye patch because he wants to be 'normal'. Even though he still struggles with double vision, he doesn't wear the patch, and yet he NEVER complains. He just wants to be 'normal' again.

We talked with the doctor who showed us the MRI and said it looked like there was a small bit of growth. He wanted to check with other radiologists to confirm it because he wasn't sure if it was scar tissue or not. The MRI's can be tricky to read. I can't say I was surprised as we figured it had grown, however it still feels like the wind has been knocked out of you. Now what to do...? Oliver was in the room the whole time and knows all that is happening. We've been completely honest with him about our options... or lack there of. Oliver is in charge of these decisions. This is HIS fight and we will support him every step of the way. Please keep him in your prayers.

Oliver in the children's waiting area watching the moving sculpture.

Mike, Jen, Mom, Ollie, Ed

Ollie in dad's hat.

Ollie getting some goodies from Jen!

Ollie and Mike Ernster.

Jen, Ollie, Mike. They are two of our favorite people to visit down there! ALL the people that have helped us have been GREAT... seriously. There is something special about the people that work down there!

Me, Ollie and Ed

Ummmmm... playing football in the hallway of the hospital. Don't worry, it wasn't a MAIN hallway! ;o)

Kinnick Stadium -- where Oliver will be Kid Captain soon!!! It is directly across the street from the hospital.

The street was lined with posters of each of this years Kid Captains! Oliver is the third one down.

At Applebees, eating steak of course. I'm so happy he can still swallow and be able to enjoy his favorite foods.

"Don't smile.... DON'T SMILE, OLLIE!!!"

Oliver has really been into Indiana Jones lately and we saw this photo on the wall near our table!

One of the many Herky statues around town!

UPDATE!!! (Progression)

September 18, 2011

You'll have to periodically check back to see new blogs as I write them. I just wanted to post an update about what has been going on recently.

August 31st: Oliver had his MRI, which we had moved up two weeks because we were seeing symptoms returning and/or getting worse. The MRI showed tumor progression. It was the thing we have been dreading for the last year and a half since his diagnosis. It's only grown a small amount that he doctor could see on the scan. We still need to talk about a second round of radiation which would only be three weeks as opposed to his first round of six weeks.

September 5-12: Trip to Disney World in Orlando, Florida. Oliver had to visit the ER the night before we came back home due to a horrible allergic reaction to something he had eaten.

September 16: Met with the pediatric oncologist to discuss our options for Oliver. Oliver wants to try chemotherapy so he will have his first appointment this Friday, the 23rd down in Iowa City. He will have an hour long surgery to place a central line (port) in his chest to cut down on the number of IV sticks he would have to get. He's very nervous for this. He'll be taking a chemo pill daily along with a steroid pill daily. He will also have an IV chemo once a week down in Iowa City. I'll have to see what the names of the chemo were again. I think one of them was Vincristine. They were two that I've never heard of.

September 17: Oliver was chosen out of over 200 kids to be one of 13 Kid Captains for the Iowa Hawkeye football team this year. After he was told that his tumor had grown, he told me that he wanted to live long enough for the game. He's been talking a lot about dying lately and asking tons of questions. He'll say... "When I die............." and I just lose my breath for a minute. How are you supposed to respond to that???

COMING...

Friday, September 23: Oliver will be having surgery to place a central line in his chest. He will also be having his first IV chemo treatment that day as well.

He knows his tumor is growing and what the outcome will most likely be. We are still fighting until the end, trying to ease his fears as they come up. We are also dealing with home issues as well as the health of our kids, especially Jaren and Oliver so if I don't return emails or calls, please understand that we are horribly overwhelmed at the moment, physically, mentally, emotionally and spiritually.

Please pray for us to be guided in all of the decisions we have to make at this time. Please pray for strength to be with all of us, especially Oliver. I know he is scared right now and I hope that he can be at peace -- that we can ALL be at peace with what is happening. My mind is constantly running from one thing to the next with no down time to rest. I just pray that we can deal with whatever life throws at us next.

MRI Tomorrow

August 30, 2011

Well, Oliver's MRI that was originally scheduled for September 14th has been moved up to tomorrow. The increase in symptoms has worried us tremendously. Who knows what tomorrow will bring. I pray for good news, but expect the worst. I expect to hear that the tumor has grown. The dreaded word... 'progression'... something I never want to hear in regards to this horrid disease that has embedded itself in my child's brain. My stomach is churning right now and we aren't going down to Iowa City until tomorrow. His MRI is scheduled for 11:05 am tomorrow. Please keep Oliver in your prayers. PLEASE pray that his tumor has NOT grown. Pray for a complete healing. I KNOW that Heavenly Father can heal him if it is HIS will. It doesn't matter WHAT we do here because He is ultimately in charge. Although I struggle at times with my faith... that is something that I truly feel. I don't know if I'm angry at the idea of not being able to be in charge, to not be able to do anything for Oliver. It is NOT in MY hands. It is NOT in the DOCTOR'S hands. It is NOT in OLIVER'S hands. It is in Heavenly Father's hands. Although I know that, I am still so saddened and angry because I just don't know WHY yet. Knowing this doesn't take the pain away. I get so frustrated when I hear "You just need to have faith and he'll be healed" or "My child BEAT this disease" as if their fate lies in our hands. The kids who are survivors aren't STRONGER or MORE IMPORTANT than the children that have passed. It was just Heavenly Father's will. You may have faith that they will be healed, but it isn't because of your faith. It was just Heavenly Father's will. Anyways... just had to get that off my chest.

I've been following MANY blogs about other kids and their families' journeys with DIPG. We are all at different stages. Just tonight I've read a blog about a mother grieving after her daughter's passing 11 days ago and how difficult it's been to go through her things, a blog about a little girl passing just tonight and a blog about a little boy struggling with skin irritation and pain because of medicine and this disease. This young boy, Caleb, was diagnosed one month after Ollie so I've been following his blog from the beginning. He's had a second round of radiation and his health is declining. Oliver has his MRI to see if his tumor is growing. As I'm typing this another child will be diagnosed, another child admitted to Hospice, another child showing the first signs of this disease while their parents are completely unaware. It just makes me sick to think about.

Again, please pray for good news...

Moving up Oliver's MRI??

Oliver's next MRI is on September 14th, however, his speech has drastically gone downhill. It's very difficult to understand what he is saying now and sometimes sounds like he's slurring his speech. Just within a matter of two weeks, it's gotten worse. Ed called his doctor down in Iowa City to try and move up his MRI date, but we haven't heard back yet. We just are at a loss for what to do right now. It's so difficult watching his health slowly decline.

I've been wanting to call Hospice because I heard that they're a good resource for different things throughout the medical journey and not just the end. They provide counseling and other things as well as palliative care. We'll talk with them and start meeting with them as well as talk to the doctor and see what he has to say.

**I had a dream about Oliver last night. We were at the airport and then at Disney World, but he wasn't with us. In my dream he had recently passed away. I saw large posters of pictures I'd taken of him lining the walls at the airport and then it hit me that he wasn't there to enjoy his trip with us. It was such a real dream. Too real.

Yesterday Ed and I had Jaren and Phineas with us for lunch at Culver's. I was looking around the restaurant and realized that other people had no idea that we were talking about what to do about our dying child. End of life care... etc. This is our life. This is real and it makes me ill thinking about it. Maybe hospice could provide information about what to do with regards to cemetaries, headstones, funeral services, etc. I just have no clue about all of this and don't want to think about it. One thing I have learned is that you need life insurance for your entire family. No one ever dreams that their child with die before them, but it happens... it IS happening. Make it a priority to talk about it with your spouse. It's nearly 10,000 for a funeral. We only have 2,000 dollars for health insurance. I don't know if there are other ways financially to receive help or not. Maybe hospice would know more. No one wants to think and plan for these things, but you just HAVE to.

Anyways... we'll keep you posted on what we hear from the doctor. As it stands now, September 14th will be his next MRI date.

Update on Ollie

This past 19 months has been such a roller coaster of emotions. So many times Oliver will go through periods of time where Ed and I think that his tumor is growing because of the symptoms he'll start having. He'll start choking more, stumbling more, etc. After a bit of time, the symptoms will subside and we are left wondering what is going on. We were so sure that his tumor had been growing, but were gladly shocked and surprised to find out that his MRI in June was still stable. He has his MRI's every 3 months to check on the tumor and see if it remains stable or has grown.

In the months that we wait for an MRI to ease our fears, it seems that I freak out about symptoms reappearing and wondering if his tumor is progressing. It's a horrible state to be in... always nervous for what the next day will bring.

As far as his symptoms go this is where he is currently:

Double Vision - He still has double vision and so he wears his eye patch most of the day. If he doesn't wear it, he gets a headache and nausea. A few weeks ago, he'd taken his eye patch off and it looked like his eye was straightening out! I couldn't believe it! So, he's been having periods throughout the day that he doesn't wear his patch, which is great!
Balance / Gait - Oliver still walks differently than he used to. He trips and falls down every once in a while here at home and when we are out and about. His legs just aren't as strong as they used to be and his body isn't doing what it should. I joke with him that he walks like a drunken sailor. We try to joke around about things to make it easier to deal with at times.
Strength / Endurance - Oliver can still walk, but we just got him a new wheelchair fitted for him last week. Whenever we go to the store, I try to get him to walk as much as he can so he can get the exercise in, however he tires easily so he's usually in the wheelchair. He just can't walk long distances anymore.
Speech - His speech has gotten worse over the last several weeks. A few weeks ago he was at my mom's house and I was talking to him on the phone and I seriously could hardly understand a word he said. When I'm with him face to face it's easier to understand him, but we have to ask him to repeat himself several times. I've also noticed that the longer he speaks, the quieter he becomes. When he's finishing a sentence it trails off like he's having a hard time catching his breath. When he's getting upset and tearing up or when he's whining about something, it's almost impossible to understand him. I find myself straining to make sense of what he's saying.
Emotions - I don't know if it's because he's getting older... if it's because he has a younger sister that is close in age... sibling rivalry... or what... but the anger and the eye rolling has been difficult for me to deal with. He has times where he just is as sweet as can be and laughing and joking around and then there are times when he's bugging the crap out of his siblings and gets angry and more aggressive when someone ticks him off. I know anger is an issue when a child is on steroids, however he hasn't been on them for over a year now. He's also been more emotional and cries and gets upset more easily. I do know that brain tumors can affect emotions based on where the tumor is pressing in the brain. The anger and pouting has been so hard for me to deal with because it's just not the same Ollie which makes me so sad to see and it just grates on my nerves to be harping on him all day long.


It's hard to see how much he has changed both physically and emotionally / mentally. I see so many photos of kids with DIPG and I'm struck by how much they look alike. The way their legs look is the same... the loss of muscle tone, the droopy eyes, the sagging smile at times, the way they speak. It just makes me sick.

Two more little boys passed in the last few weeks... Ty'Yonne and Kendall. Please keep their families in your prayers.

Ollie's next MRI is September 14th and we are praying that the tumor remains stable or a miracle occurs and it shrinks! We always have to hang on to that shred of hope... even if it's just a shred.

Oliver's MRI - June

Tuesday, June 14, 2011

I thought this sign was pretty funny. We eat at Chili's a lot when we go down there since we don't have one here in town. I love their chips and salsa as well as the fact that they support
St. Jude's Children's Hospital.

Ollie and Bear

Wednesday, June 15th, 2011 - MRI day

Jaren watching the 'ghost playing the piano' at the hospital in Iowa City.

Oliver waiting in the children's area.

Weighing in...

Reading Teenage Mutant Ninja Turtles while waiting in the room for the doctor.

Ed looks like he's getting a once over by some weird alien device or a women's nylon container... :O)

Ed and I have been very nervous for this MRI, as Oliver's weakness and gait have been getting worse. He's been stumbling more lately and choking here and there. These are all signs of progression, a term for tumor growth. He went in and had his MRI in the morning and then we started walking through the hospital to see his radiation doctor. We were surprised to see some friendly faces down there! Out of the elevator pops Karen Blough and her two sweet kids. She took our family photos right after Oliver was diagnosed and several months later, her own sweet little boy was diagnosed with a brain tumor. When my friend had told me about her son, my heart sank. I wanted to contact her immediately as I know the lonely road that she was most likely on. It was the first time I was able to meet her kids... he was there for a checkup. He is doing well following his surgery. :O)

We continued to radiology to meet with Dr. Buatti. We usually wait for a bit in a little room for kids off of the main lobby. Ollie usually plays at the magnetic table or pushes the button to watch ping pong balls make their descent through a winding track of sorts mounted to the wall.

He gets called back and his vitals are checked and then we wait in a room to talk with the doctor. A new resident that we've never met with came in and I braced myself for horrible news. I just knew that they were going to say that his tumor had grown... but I was completely shocked when he said that it was stable and may have even shrunk. I looked at Ed in complete amazement and then at my mom. I couldn't believe it! The doctor came in and confirmed what the resident had said. I am amazed. It's been nearly 18 months since diagnosis, 6 months longer than we were told he'd live. I think I'm still in shock. What now? His next scheduled MRI is in 3 months. He just started physical therapy in hopes of strengthening his muscles. He just isn't as active as he once was. Hopefully we'll learn some things that we can do at home with him. I can now exhale............

Outside Old Chicago... I had to get a picture of Ollie's favorite baseball team and football team on the same sign!

Herky statue. Herky is a mascot of the University of Iowa and there are many statues around town of him!

We drove to Cedar Rapids and stopped at Biaggi's to celebrate my brother, Chad's birthday.
Mom, Chad and Jaren

Ed, Jaren, Oliver

This kid LOVES spaghetti! :O)

Chad and Ollie

Ollie and me

Progression??

Well, it's after 3 am. I can't sleep. Oliver's benefit is tomorrow and I've been working on getting things finalized on my end. I'm feeling sick to my stomach right now as Oliver hasn't had a good day today. He's been falling a lot and complaining that it's harder for him to walk. He's been choking on things including his own saliva. He choked on some water and coughed, nearly vomiting in the kitchen. It's been harder to understand him lately and I've had to ask him to repeat himself a lot. He's also been crying... a lot... for no reason. I've been working on a slideshow and we were watching it and he burst out in tears and said that he didn't know why he was crying. He told me that he thinks it's from the sickness. I think he fears the same thing that Ed and I do... progression... that the tumor is growing again. I don't want to believe it. Maybe if I just stick my head in the sand and pretend everything is all right... it will be. Unfortunately I know all too well that I can't run away from this. His next scheduled MRI is this Wednesday, June 15th. Please pray for strength, peace and comfort, especially for Oliver as I can sense his uneasiness right now. We'll keep you all updated...

Ollie's MRI Results - December

Wednesday, December 15, 2010

Today's MRI was particularly nerve racking for me because I've seen an increase in symptoms the past week and a half. His double vision has never gone away and so we are used to seeing him wear his eye patch on a daily basis. It's his 'new normal'. He looks like he is getting weaker on the left side of his body again. I noticed as he was walking up some stairs that he was having more trouble lifting his left foot up on the stair. I have also noticed that at times, not often, that he'll be talking or laughing and a spit globule will fly out and just hang out on his lip, like a string of spit. We usually laugh about it while he quickly wipes it away, but I know that drooling can also be a sign of them forgetting how to swallow. So... with that being said -- symptoms reappearing -- as well as us coming upon his year diagnosis anniversary, December 23, 2009, I was trying to prepare for the bad news that there was progression (tumor starting to grow again).

We drove an hour and a half down to Iowa City and he had his MRI first. Then we went to the Radiology Department to see his doctor and speak with him about what he saw on the scan. He came in and said that there was no indication of progression, that it looked the same as his last scan in September! I was AMAZED for a few minutes and then back to the thoughts of 'how long will this luck last'? 'Why are his symptoms reappearing?' He'll be having his next MRI on March 2, along with a Pediatric Swallow Study to see how his throat and everything are working. (Jaren had one when we were figuring out why he hardly eats.) IF his symptoms really get a lot worse, then we need to call the doctor and let him know. IF and WHEN he starts to progress, then we talked about possibly reirradiation at a lower dose than his first round. From the DIPG support group there have been several kids that have been reirradiated and are enjoying a second honeymoon period, free from symptoms that hinder normal activity.

We were very excited that our doctor feels like this is something that he can do. We know that it is not a cure, but it will allow us more time to spend with him, if that is Heavenly Father's will. It is ALL up to Him... We are counting our blessings and realizing how important our loved ones are and continually acknowledging the Lord's hand in it ALL...

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...

Not So Good News...

Wednesday, January 27, 2010 - MRI

Oliver had an MRI this morning to see if his tumor had shrunk at all and... it hasn't. What a blow. Not quite the news we were hoping to hear after almost 4 weeks of radiation. The doctor said that it hasn't grown so I guess we have to count our blessings where they come. It still doesn't take away the pit in my stomach after hearing the news. I almost just EXPECTED it to shrink. The thought of it NOT shrinking didn't even cross my mind. Definitely not the best news to hear. They will be doubling the dose of radiation for the final two weeks of treatment. His last one will be on February 11th.

He's also been having some motion sickness problems as well. About a week ago we were driving around town and he had to close his eyes the whole way. Ed had given him dramamine and he said that it just knocked him out. He's been unusually tired as well from the radiation. He's been off the anti-nausea meds with the hope that the steroid he's on will help. He went from 3 a day to one a day so we hope that we can get by without using so much of the steroid. One of the side effects of the steroid is a puffy face and an insatiable appetite. We are starting to see his face filling out a bit. His dimples are just ADORABLE... even more so with a fuller face! It's hard to find the 'good' things about this whole situation. Every day is different. Some days I feel really strong, like I can talk about it without crying and some days I just bawl at the smallest little reminder of what he is facing.

Ed and Oliver went to school to pick up Eden and Ed told me that it was like Oliver was a little celebrity! He said that kids were just engulfing him in the hallway! One of his best friends, Tyler, saw him in the hallway and yelled, "Ollie, Ollie!" and ran up and was the first one to give him a hug! It's been so sweet to see the cards and pictures his classmates are sending to him. I love reading each and every one! Kids are truly amazing! He met up with his teacher, Mr. Galloway and talked about school stuff as well as other things that are going on. His teacher also shaved his head in support of Oliver! He even recorded the crazy event! What a cool teacher!

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.

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).