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...

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.