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:
417 Oaklawn Avenue
Waterloo, IA 50701
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