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.

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...

Oliver's Last Treatment

Thursday, February 11, 2010 - Today was Oliver's final radiation treatment down in Iowa City. In about a month he will have a follow up MRI to see if the tumor has shrunk at all.

This is how I spent many visits down in Iowa City... watching the guys on their iPods. After we found out about Oliver's condition, Ed went out and bought an iPod touch for Oliver to play with during the long car rides and in the waiting rooms. VERY good Christmas gift I must say!

Oliver with his mask and bite block.

Ollie all finished! He never had to be put under sedation once! He did so great!!!

Oliver with his certificate of completion.

Oliver and one of his gifts from the MRI techs and nurses.

Oliver with some of his favorite nurses/techs...

Dolly and Oliver

Oliver getting Mike back after he surprised him with silly string!!!!

Oliver and Mike

The aftermath... I'm glad I didn't have to clean that up!

Stacy, Oliver, Ed

Oliver flinging a gummy bug at the wall... ewwww....

He did such a good job throughout all of his treatments! The staff down at the University of Iowa Hospitals and Clinics were all FANTASTIC!!! So many people asked why we would travel for 3 hours a day for a 10 minute treatment and it's because they were all so great and did so much for the kids!!!

Full Face from Steroids

Ollie and Ed got back into town after being gone for about three days. When I first saw Oliver I noticed how much more full his face looked. There are many side effects from being on the steroid, so we have to kind of weigh our options. The doctor said that Oliver was one of the 80 percent that responds to radiation. Although the actual tumor has not shrunk, progression has slowed, inhibiting the growth of spitting cells. Ed asked how long until the tumor grows again and the doctor said anywhere from 6 to 9 months. We are grateful that he is feeling fairly well right now. He's complained of a few headaches and has been nauseas and very tired, but he's still smilin'.

The doctor also wants to wean him off of the steroid that he is on. Going from three a day to two a day, one a day and finally one every other day until he's completely off of it. I don't want this time to give me false hopes of a recovery as I know what lies beyond the next several months. I pray for as much time as possible to spend with him. You always think that you will have all the time in the world... and you really don't. You NEVER know what each day holds, but I cling to the knowledge of what the next life holds. The knowledge that we will ALL be together again someday.

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!

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.