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...

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...

Faces of DIPG

There are so many others that have had to deal with the realization that their child has DIPG (Diffuse Intrinsic Pontine Glioma) or Pediatric Brainstem Cancer. I've spent several hours reading through some blogs featured at www.DIPG.blogspot.com (some of the kids are featured on the side of this blog) and cried realizing that I may be in that group of those that are mourning the loss of their child. There are so many sweet little faces and I am so saddened to know that so many people have lost their children due to this horrific cancer just this past year. It is a rare form of brain cancer that only affects about 150 - 200 children a year. Although I have shed many tears while reading the stories of these children and the challenges that they faced, I have found peace and comfort through their parents words. I know that your prayers for us are helping sustain us. Some days are easier than others. Right now Ed is down in Iowa City due to an ice storm hitting earlier yesterday. I've been sad tonight thinking about how it would feel if he was truly gone... what that emptiness would feel like. It just rips my heart out. I feel like I haven't really bonded with Finn (my 6 week old) because of all the craziness going on lately. I feel like my thoughts are always elsewhere. I don't feel as sick to my stomach as I used to feel when we first found out, but the thoughts just won't leave my mind lately.

As a parent you try to divide your time equally among your kids, but this has proved extremely difficult lately. I've had several doctor's appointments so Ed and Oliver have ventured down to his radiation treatments alone. Finn and Jaren have been to Grandma and Grandpa's house periodically while Eden is at school most of the time. Lately Finn has been with G&G Palmer because Jaren was vomiting and then Eden had diarrhea. I've also been in quite a bit of pain lately. I FINALLY had an MRI and found out that I have a bulging disc as well as a slight tear in the disc. I had an epidural steroid injection which actually made the pain worse. I have a tens unit that numbs the pain a bit, but doesn't take it away. It's hard to do certain things. It's been very hard to deal with things when you don't feel well. I feel like I'm going to lose my mind. I've never felt anxiety until last week. I seriously felt like my body couldn't handle the extreme emotions that I was dealing with. *sigh* I just don't know how I'm gonna handle this...