Radiation Mask

We had a doctor appointment today with the Radiation Oncologist here in town, Dr. Craig Donaldson. He gave us A LOT of information, which was good, but I'm not sure we remember much of it. He did  explain the treatment plan, which was the same as what Dr. Hunter had talked to us about, along with all of the side effects Colby may or may not experience. Because they're radiating his head (brain), he'll lose his hair, tiredness, and can have some sunburned skin. Also, because they're radiating his spine, they say he could get nauseous, and experience some throat soreness. There are a ton more side effects he told us about but I can't remember them all. After we met with him, they took us back into a room where they had him lay on a table like he was going into the machine for an MRI, they had to measure him and mark him with tattoos so that he lines up exactly the same every time he gets radiation. Then they made his mask. CRAZIEST thing!!

This was so interesting! Doesn't it look like it would make you claustrophobic? 

The mask was flat, they put it in a steamer to heat it up and make it flexible, then they have to hurry and put it over your face so it can form to you. The white edges snap down onto the table so it's tight. Then they made marks on it, you can see where the lasers are, that's how they line him up to make sure they radiate the exact spot each time.

Modern technology is amazing!!!

Radiation starts August 6

Huntsman Cancer Institute

I have to admit the day I got that phone call from HCI, was one of the hardest days! You just don't ever expect to get a phone call from the biggest cancer center in your area.
Because of Colby's physical state, driving is hard. For him and for me. It takes a lot of effort for him to get in and out of the car, and same for me. I have to get the wheelchair, put it together, take it to him and help him get out. At every stop! We decided that since we just came home last week, we were going to fly up to SLC for these dr. appts. We have a VERY generous friend who offered to fly us up there in a private jet so that we didn't have to deal with the airport, and other people.

We met with Dr. Howard Colman, and his PA Sean Strope. They are very intelligent men. A lot of what they told us went straight over our heads, but I'm sure in time we'll figure it all out. He talked to us about the treatment process:  6 I.C.E. (Ifosfomide, Carboplatin, Etopiside) chemo cycles - 3 days of treatment, day 4 is a shot of Neulasta to help raise his blood levels, and then 3 weeks off. Can't wait to see how it all plays out!

After this appointment, we drove over to LDS Hospital where we met with Dr. Hunter, a Radiation Ocologist. He explained to us the radiation treatment process which will be 6 weeks of cranial spinal radiation; 3 weeks whole brain and spine, 3 weeks boost only to tumor site. 

We asked both doctors about doing the treatments in St. George, and they both agreed that it would be ok. Especially for the radiation, it's 6 weeks, 5 days a week. We would have to move up to SLC just for that. School starts in only a couple of weeks and I don't want to have to move the kids, or depend on someone else to take care of them for that long, so it's a huge blessing that we can stay home for treatments!!

24th of July

This year it was pretty uneventful! And that's ok!! We've had a crazy couple of months, but we weren't about to miss our tradition of Beaver celebrations!!

We got up early and drove up in time to make it for the parade. With Colby needing a lot of help, and still using the wheelchair as his main way to get around, I needed help. My dad volunteered to come so he could help Colby around. I am SO grateful for him!! We went to the parade, and afterwards while I took the kids to the park, my dad took Colby up to my aunt Linda's house so he could rest. We met up with them after the park.

We ate lunch with the family and then after the kids ran around for a while we headed home. It was fun to go and do something 'normal', but it was hard and a lot of work, so we didn't stay too long.

Discharge day at IMC 12th floor

July 22
I want to remember how Colby was doing on the day he was discharged from the hospital to be able to compare it in a couple of months. This is part of his final test with Lance

When a patient is discharged they let them choose a song to go home to. Colby chose "I'm going home" by Daughtry - so many things about this song is him, and his experience. They play the song over the intercom on the whole floor, pushed Colby around the halls so he could say goodbye to everyone, and all the other patients and nurses/aides/therapists cheer for you. It's a lot of fun!! (it's a video that I can't upload)

Us in the car ready to go home!!!!

When we pulled into our neighborhood there were gray balloons lining the street, and gray ribbons on everyones homes. Our neighborhood is so loving and supportive!! (Gray is the color for brain cancer)

And we had signs all over our house - inside and out!

We are so grateful for al the doctors, nurses, therapists, and staff at IMC! There will always be a special place in our hearts for them!!
I cannot express enough, how grateful I am for our family. They have all had to help in some way, mostly with our kids, and I will forever be in debt to them. Thank you for everything!!

Our favorite nurses and therapists

Nancy was Colby's nurse up on 14 - she is THE BEST nurse/person we have ever met in the medical field. Each of our parents got to know her as well as we did. She will always hold a special place in our hearts.

Lance was his main Physical Therapist. He is amazing!!

Hillary and Kim were his Speech Therapists. Both amazing and worked so hard to help him as much as they could.

Pam - she was the happiest, most positive aide. No problems doing whatever had to be done, or teaching him how to do things. 

Diagnosis

Today, by far, has been probably the hardest day. While Colby was in PT, Dr. Reichman came in and got me. We went back to Colby's room and he told me the diagnosis…
Pineoblastoma Grade IV; the worst they've ever seen - NOT GOOD!
This was the one we were hoping his tumor wasn't. Dr. Reichman says he has seen a lot of these, but none like this one. There is a tumor board that meets every other week to look at cases and determine what it is they're dealing with. Colby's board is made up of Dr. Reichman, a Neuro-Oncologist, a radiologist; a radiation oncologist, and all others who will be involved with treatment, and none of these people have seen one this bad.

By definition:
Pineoblastomas are found in the pineal region which sits near the exact center of the head and brain. They are the most aggressive and highest grade tumor among pineal parenchymal tumors. They are typically found in young children. Pineoblastomas are typically large and almost always associated with obstructive hydrocephalus, which is what took Colby to the doctors in the first place. Compression of the tectal plate may also result in the Parinaud syndrome - a supra nuclear vertical gaze disturbance caused by compassion of the tectal plate - double vision(which he came out of surgery with).
They are highly malignant tumors prone to CSF seeding, quickly growing and invasive.
Treatment is usually a combination of surgery, chemotherapy, and radiation. Despite these measures, prognosis is not good.

I honestly don't remember everything he said to me in that room. I put on my strong, brave, fighter face and went back into the PT room where Colby was. Actually, I text all our parents first. Told them what they needed to know, and to not call or text Colby because he wasn't there to hear from Reichman with me, and he didn't know yet. When Colby was done with PT we went back to his room. He knew I knew something, but I just wasn't prepared to tell him the news yet. I told him it was a Pineoblastoma but that Reichman would come back later in the day to talk to both of us and answer any questions.
As soon as I told him he said "that sucks" and not much else. They came right in to get him for speech, we went down, but the therapy dr. came in and wanted to talk to Colby and he just asked to miss the session for the day. We told the therapist that we'd gotten a diagnosis and she understood. We went back to his room, he talked to the dr. for a minute and then we just sat around, pretty depressed and upset.

After I text our parents I immediately got messages from my parents and Sherie. They were on their way up and I couldn't say anything about it. And I'm so thankful they came! I called my mom and she was a mess, which didn't help me AT ALL!! We both just cried on the phone. She was mostly mad and sad that she wasn't here with me when I got the news. They all think I shouldn't have been alone, but how could that have been avoided? It totally sucked being by myself, and not having anyone to just cry to but I made it through.
After a while I had to take my phone to the car to charge it, and while I was there Colby called to tell me Reichman had come back to the room to talk to us. So I hurried back up there to hear what he had to say. He went over everything he had told me, to Colby, and answered any questions we had. Which wasn't a lot, we didn't know what to ask, we don't know much about this tumor, and what we do know is that there isn't a lot of information on them.

When my parents go close they stopped at Makayla's and picked up our kids. I thought Colby would want to see them, and it helped put a little smile on his face! I was already planning on driving home tonight for the weekend and then coming back Sunday night or Monday morning to bring Colby home on Tuesday. I'm so grateful they all came up so I didn't have to drive home alone with the kids. I probably would have broke down to them and then freaked them out!! My parents took Noah and Cutler, and Sherie drove with me and we had Lexie and Mason. We left pretty late,

FB post:
Pineoblastoma Grade IV
Dr. R says fight like crazy. So that's what we're going to do! We haven't told our kids yet, not sure how. But, Colby is suppose to be discharged on Tuesday, so hopefully by the time we get home, we'll have figured out how and what to say. We see the Oncologist the next week, and hopefully soon after that can start treatment. Which we still aren't sure which route they'll take first. 
Prayers like crazy are certainly asked for!! Although, we know, no matter what Colby does, or we do or what the doctors do, it's not really in any of our hands. We're putting all of our faith in our Heavenly Father right now.
We are so incredibly blessed with so much family and good friends so close, who are all helping. We have an amazing ward, which we just barely moved into, and neighbors who are unbelievably supportive and all want to help. We hardly know these people, and they're all amazing!! We know we are loved.
So FIGHT we will. We have it in us. Never have I felt the love of my Heavenly Father and Savior as much as I do now, and have for the past two months. It's an incredible feeling that I hope sticks around for a while. As always, thank you everyone for your texts, calls, offers of dinner, to take care of kids, money, everything!! In the next few weeks, we might be taking you up on it smile emoticon

OT

I ran down to Makayla's to pick Mason up and bring him up with us. For some reason he just doesn't do very good at her house. And he'll probably forever associate me leaving him with her house. It will be interesting!
This is on our way back up to the hospital to see Colby and spend the afternoon with him

Not long after we got there the Occupational Therapist came to get Colby. She had talked to us about having an 'outing' one day for therapy, to give us a chance to see what it would be like for us, and to see how we would do. So today, we decided to go to Costco. It's right behind the hospital so we just walked and Colby had to push himself in his wheelchair! Some of it was pretty rough because it was uphill. And hot! But he did it!!

I didn't take any pictures of him doing the actual work while we were there. She and I chose some items and Colby had to figure out where they would be, push himself over there, and then stand up to it as if he were going to buy it. It was a great exercise for him!
Then we got a little ice cream treat and made our way back to the hospital.

When we got back Colby was wore out. He fed Mason his bottle and then I took him to Kristen's. 

All of the therapy up here has been completely amazing!! I am so glad they made him stay and get the help he needed to be able to go home!!

A week or two at once

July 5 FB post:
Not much has really changed today. Colby has drank a lot and eaten a little, but he's kept it all down!!  Still really unstable. When the PT came and worked with him, she told him not to walk with anyone but her except to go to the bathroom, because of how much she had to help him. They had to take a break so she could rest. So that means he can really only walk around once a day, and he gets a little restless sitting in that bed all day. She worked with him quite a bit stretching his muscles and when she was done he was tired! He had a lot of visitors today, which was nice and he loved, but he was pretty exhausted by the time they all left. When I got back to the hospital tonight he was asleep, so I didn't wake him up when I left. Dr. R was there just starting rounds so I just talked to him and we left Colby to get sleep. He's going to talk to the PT and change what she did about walking. He says that's the best thing for him to get stronger, get the medicine to wear out of him and get his bowels moving. Sure hope she doesn't get yelled at too much!! After some other things the dr. changed it doesn't sound like we'll be out of there by Monday or even Tuesday. Which is fine, I need him better, stronger, and more stable before I take him home. And it's sounding like he may have to be in a rehab center for a little bit once we get there. Not sure how I feel about that, or how he'll feel about it when he hears. But we'll have to wait and see. That's just talk right now. That's really all for today! Amazing huh?! Our kids are coming up tomorrow and I am so excited to see them. I miss them so much!!

July 7:
Trying to keep kids quiet and holding still at the hospital is a challenge. We have to do whatever it takes to keep them happy!

July 9:
Here are some of the things Colby has to work on daily. It's amazing to me the things he has to re-learn. I guess he doesn't really have to re-"learn" them, but gain the strength and balance to do them again. And most of it is simple things that we take for granted every single day.

July 10 FB post:

It's been a few days and lots of people are wondering about Colby. Here's a little recap of the last few days.
They've moved him to the Physical Therapy floor where he'll get around 3 hours of therapy a day. Physical, occupational, and they're doing a little speech right now too. Sunday he was walking with the PT upstairs, and Dr. R came by. He ripped the bandage off while Colby was standing. We all kind of freaked out and were totally surprised he would do that, but Colby said it didn't really hurt, and I was amazed at how clean the incision was. They didn't have to wipe it off at all!! 

July 9

He got down here on the PT floor Tuesday afternoon, not in time to have any therapy that day. But the admit evaluations were good enough for the day. Yesterday, being his first real day on the floor was a busy one. The PT will come in, say its time to go and help him transfer, just so he's safe, but he has to wheel himself to the gym, and scoot in and out of the chair pretty much by himself. It's actually good for Colby, and he likes that he's moving around.
His vision is still struggling. He can see, and they've taken the patch away and taped his glasses instead, so the double vision isn't there, but he can't see very clear.
Still hasn't used the bathroom. Catheter is out and they're doing almost everything they can to get him to go on his own, but it's not working. I'm nervous about the next step for him in that area.
He's still pretty unstable, and it's pretty much on the left side. When he walks, the way it looks to me is like his leg is asleep and it kind of flops. He does have feeling there, so not quite sure what's going on there. Dr. R says there's no reason these things shouldn't be working except the vision, he didn't touch any of those sensories. So we'll try to be patient and wait for therapy to kick in and start working. He's totally wiped out when they're done for the day.
Kent and Sherie came to visit Tuesday, and since they're friends with Dr. R he came and spent a good amount of time with us and showed us his before and after scans of the tumor. He also talked to me a little about biopsy results. We're meeting with him later today so he can explain everything to Colby and I and make sure we understand it all before I try and pass the information on. What we do know is there will not be anymore surgery. Right now we are focusing on getting him better, healthier, stronger before we move on to the next step. We are still waiting for some results, and hoping to have those tomorrow before I go home for a couple of days.

Melanie sent some yummy treats to us today!!

Also today they worked on walking with a walker. That dang left leg of his just doesn't quite know when and where to step. 

July 14 FB post:

Little update today. I went home over the weekend to spend some time with my kids, and repack bags for this week. It was so good to just be with them in their normal environment, and around family! My hat goes off to anyone who spends more than a week in the hospital!!
We are so blessed to have so many family and friends who live up north, and have been so willing to come by, help with anything we need, or just even call. Colby has had lots of visitors, and it feels amazing knowing so many people care about him, and our family!! So thank you to everyone who entertained him while I was gone!! Ha, like I'm entertaining at all! He probably loved having other people there way more!!
While I was gone, they took out his stitches, his scar looks pretty good. They don't do as much therapy on the weekends, so Saturday was an ok day, but Sunday he only had an hour of therapy all day. The bathroom situation is pretty much the same. They've got him on a fluid schedule, so he has to keep track of what he drinks, cath every 4 hours and make sure he empties what he drank. He doesn't love it...at all!! But it is what it is. 

They think while he was up on 14, his bladder got so stretched out that they've got to get it back to its normal size and then it will start working on its own. I'm praying everything in that department starts working quickly, on its own!!
Today the PT (Lance) took him outside and we did car transfers. Colby did awesome!! I was worried but with the car there for him to hold on to and support him, he does great!! When he got back to the room he told him he would tell the dr. Colby's cleared to leave the hospital with me for a little while when he wants. I'm sure he's dying to get out of here, even for just an hour! 

Still waiting to hear from Dr. R more test results. He was hoping to have them today sometime. And until we hear from the therapy floor dr., we don't know how long we'll be here. More than likely, the rest of this week. Which is ok. I'm totally wiling to do whatever I have to at home to help Colby, but I'm not physically capable to support him. So I need him to be completely stable, and able to transfer himself. So we'll do whatever we have to in order to get him to that point.
We're so thankful for everyone that comes to visit, sends food smile emoticon, calls, texts...all of it!!! We have had so much help with kids, and I will forever be in debt to all who have played a part in this whole journey. We are still putting all our faith in our Heavenly Father, and praying that everything Colby is dealing with will start working again, and that he can get himself back to feeling 'normal' again. I'm certain we'll have our new normal for a while. And it will be difficult, but it's ok. We all need to have challenges, and we're taking this one day at a time, the best way we know how!