Wednesday, November 2, 2011

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

20 comments:

Heather Adams said...

Staci and family-

I know you probably don't feel strong at all right now. But as i read your most recent post I am struck by all you are doing and have done to prepare for what's unfolding. You taking the time to do these small things with Oliver and your family will make all the difference for you guys. I know that no part of you wants to go through this horrific ordeal. But I can promise you that angels will guard your home and that you will be sustained. you will be stretched and tested and tired but you will be sustained. Hang in there! Sending love and prayers from WA.
Heather Aams

Bobbi said...

Stacy,
<3

Jodi said...

Praying....always. <3 <3 <3

Jamey and Catherine said...

This is the first time I have ever come across your blog and I am so sorry for all that is happening in your family. I have never experienced what you're all going through but thought I could help to make some suggestions for family activites and memories for the future. Take lots of video...even when you think you have enough take more and more again because when it comes time to look back you'll feel like there should be more. Video with siblings playing together, pictures playing together etc. If you haven't done anything like this already its another suggestion. Mix up some cement in a movable container (In case you ever move and take it with you) While its still wet every member of the family puts their hand prints and or foot prints, names and ages and the date. It symbolizes a time, place, and memory where you were all in one place at one time. Its solid and in stone. When my daughter is home from school I will share your story with her and I know she will be touched just as much as I am. Thank you for letting me comment and I wish you all the best memories and time together no matter how much there is. :)
Catherine.

jeffroeson said...

To Oliver and his family:

I am so touched by the words I see on your blog and the knowledge I have from people who have put Ollie in their thoughts and prayers.

Your courage to face this difficult time is so heartfelt and overwhelming. I share tears with the family.

smiliesar said...

My tears have fallen as I've read this post. I can't believe it's happening. I was getting so hopeful that he would be one of the lucky ones as I've followed your journey. My heart aches for you as a mother trying to deal with your own pain/heart ache and that of your children's too. SWEET HUGS!!!

eureka1951 said...

I am humbled by your post! And praying without ceasing. You are an AMAZING family and are touching more lives than you will ever know! Praying for strength and comfort to deal with all you are going through. Oliver is truly a special young boy and God is using him in ways you can't even imagine right now. Please know that you are loved!! And our hearts are breaking along with yours.

meghan said...

<3 crying with you. wish i was closer. our letters will be there soon!

Meredith and Jason said...

My thoughts and prayers are with you. I'll get a letter on its way!

Amy Halterman said...

Ever since I came across your blog and FB page from Team NEGU, I have been so touched by the strength of Ollie and his family. I think of him often, and pray always and yes, I always pray for miracles. I know that our Heavenly Father has a plan for each one of us, but Ollie, I do hope you know that you have made a difference, in my life and the lives of all who meet you. Your wonderful smile and spirit do much to uplift all those around you. My 15-year old son was very touched with your story, and immediately went and prayed for you, and for your strength and for our Heavenly Father to lift you and wrap His loving arms around you. Praying for your continued strength and bravery

Amy Halterman
Richmond, Virginia

Karen said...

Hello, I saw a story about Oliver in an online paper. I work for a newspaper in Missouri, so I'm always reading news stories. Anyway, I wanted to let you know that I've been thinking about you guys. You are so strong. I am sending Oliver a card tomorrow. I promised to crochet a few pairs of slippers for children at the hospital. I'm going to try to get them done as SOON as I can!

Anonymous said...

Hi Stacey,

Will put pen to paper as soon as possible. Ollie has a very special place in my heart and will remain there. I'm also sending love and strength to you.

If there's anything I can send to Ollie and/or his siblings, from here in the UK, please send me a fb message. I'm useless at keeping up with fb but private messages are emailed to me.

Hugs to you all.
C Kenchington
XxX

Anonymous said...

I'm so sorry to hear of the progression. THERE NEEDS TO BE MORE RESEARCH! One thing among many that Rosy from http://prayingfornina.blogspot.com did was have her daughter Nina, who had DIPG, pick out birthday presents for her brother for years to come as a lasting memory of Nina. I think in the end there was something like 20 presents. Every year on his birthday, he and the rest of the family will feel like she is there watching over. I know that you will create your own memories of sweet Oliver, and my prayers are with you for healing, whether that be earthly or heavenly, in this difficult time. What a legacy Oliver has left already in the lives of so many.

Anonymous said...

Oliver,

We have sent you some cards. We are friends of Jodi's and your story has touched our family. We have loved you and prayed for you without ever knowing or having met you. You are a very brave young man and you have gone thru all of this journey with such dignity and strength. We wish you did not have any of this to deal with but wanted you to know that all the way in WV you have touched the lives of our very large family ( 27 children). You should receive our pkg. this week and we hope you know from our cards that you are special. May angels surround you and may you feel the arms of the Lord holding you tight.

Jeane

gae polisner said...

Ollie, I don't even know you, but reading your story -- and seeing and feeling all your bravery -- and looking at photos where the love you have for your family seeps through the screen, well, you should know you have already touched my life and changed it forever. The few kids (too many, GOSH TOO MANY!!! >:( ) kids I meet on facebook always remind me to kiss and hug my kids more and to try to be a better mom because we are lucky to have every single day we have with our kids. Now, when I kiss and hug my kids, I am going to add your name to my lips and my brain and will send you a kiss along with them. Also, I'm a writer and I write books for teens, and the next time I have a strong boy character who needs to have something extra special about him, I'm going to name him Oliver in your honor. We almost named our first son Oliver, but we ended up naming him Samuel after his grandpa. Thank you for letting me meet you just a little through your words and photos. It means so very much to me.

Gae Polisner

Anonymous said...

Oliver and Stacey,
I have been following your blog since the summer when my godchild was diagnoised with DIPG.My heart broke when I read your most recent post.I wish I could change this and take this away from you and my godchild. As a mommy myself of 5 and my oldest a 10 year old just like Ollie,I can't imagine what you are going through. I just wanted you to know you have changed our lives, you have made us all be more "there"with each other as a family.There's no word for it. But you have just changed us. God Bless you all

Anonymous said...

Obviously I don't know you or your family. But I feel I can relate in a small way. I lost my sister to brain cancer. It is an awful thing to deal with. I just want you all to know that Oliver will be in my thoughts and prayers, as well as the rest of your family. Also know that your story has reached someone from a small town in Northern Utah. Its amazing the tools the Lord gives us to impact other lives. I'm positive that Oliver and your family has impacted so so so many lives in ways that you will never know! May the Lord bless you in countless ways! Much love, prayers, and well wishes from Utah!

Anonymous said...

Stay strong Oliver! Sending out positive thoughts and love to you and your family.<3

janette said...

Oliver's story touched my heart and he is a very special little boy and no doubt, will be an angel always with you. My cousin lost both of her sons to Luekodystrophy. She is very understanding, spiritual ,and ituituve. She would understand what you are going through more than most. If you are interested, you could friend her or message her at Visions by JDR, her name is Darlene. Maybe she can answer some of the things that you are wondering about telling him. God bless you and your family. I will send Oliver a card and I hope he gets it before Christmas.

Patti Young said...

I know all to well what ur going through from
my experience...with ur uncle doug ...all the questions in your mind...but stand fast Gods grace will keep helping u..it doesn't seem right or fair n u heart is breaking every day..hold fast toJesus he will help u n enable u to get through this....ollie is so very special....keep on loving him and doig what u r dong blessing him and others...you will find your answers....loving u all patti