Originally posted: December 25, 2015

To quote Derek, "this was the best Christmas EVER!" We had a great day. Blessed by my Associated Eye Care family more than we could ever have dreamed. We saw some old friends at church which was nice. And finished with a wonderful day at home with no Dr appointments.[...]

Originally posted: December 24, 2015

All we had to do for Derek today was go to his radiation (#4)early this morning. That was fast and easy and uneventful as it has been. Praying it stays that way. No PT or OT so home we came. He had a good nap before church but was pretty wiped out after. The days really have been flying by. Tomorrow marks 4 weeks since they found the tumor. I can hardly believe it. Hardly believe that it has been 4 weeks. Hardly believe he has an aggressive cancer.
I went to the store with Kate today to get some last minute food items and as we were walking out to the car, an elderly woman was walking past me. She looked me right in the eye and said Merry Christmas and put her hand on my arm and gave it a quick squeeze. It happened so fast, yet that moment in time seemed to linger. Neither of us stopped walking yet she was able to connect with me. I must admit, that small gesture brought me to tears.[...]

Originally posted: December 23, 2015

We started the day with radiation. That went smoothly again. So thankful for that. Then off to PT. That was going very well. Derek was working hard and doing a lot of different things. He has to work on sitting in a chair and standing up again. He has to work on getting down to the floor and back up again. He had to walk up and down the hall stepping over things. He then had to follow his sister, no walker, and try popping bubbles she was blowing. That was going well, but he was getting tired. He was almost back to the room we started in and there was some construction going on and there was something on the floor in front of him. He couldn't go to the right to avoid it as there was something else in the way(very large). The thing on the floor was about 2 feet wide and about 3 feet long and maybe a quarter inch off the ground, maybe less. To top it off it was sticky on the whole top. I'm not sure if his foot caught the edge or if he got to the sticky part, but next thing I knew(I was just following observing his therapy) he was on the floor with his face making contact with the floor. Thankfully he was fine. Nothing more scary to a mom(ok, there have probably been scarier things lately, but this is up there)
than to have your child who just had 3 surgeries on his head to land face first on the hard floor!! Derek took it in stride and was back off again after he was checked for any problems from the fall.[...]

Originally posted: December 22, 2015

We left home at 6:30 this morning. We had to be at OT by 8am. That was supposed to be an hour but radiation was scheduled for 8:45 and then PT at 9am. Then off to a whirlwind appt that lasted a couple hours in oncology. We met with pretty much everyone we possibly could in the clinic and on site I think. We were not rushed at all. We were able to ask any questions that we had(which at this point is not many as we don't really know what we even need to be asking at times. Everyone came to us which was wonderful so we did not have to go to 10 different places to meet with everyone. So well orchestrated. Even one of the 2 gals that does all of the triage phone calls ENCOURAGED us to call with any and every question that we may have. WHO DOES THAT?!
Who has time for that?!? But they did. And you could tell that she meant it. SO so cool. We got home after 4. It was a long day. The kids did so good at being patient while we talked to everyone we needed to meet with.
We spoke with someone from the trial. We have to wait and see if they will accept us into the trial before we can decide if we want to be in it. So, we wait to hear on that.
We also have no words to express how grateful we are for everyone's support, gifts whether things or monetary, and for each and every prayer. We have been so surrounded by love through this journey. We are truly overwhelmed by it all.[...]

Originally posted: December 21, 2015

We thought today would be our last day at home without anything to "do". We knew Physical therapy(PT) and Occupational therapy(OT) were to start bright and early tomorrow morning. We did not have the radiation start date. That was until just before noon when we found out it would start at 5 today. Shortly after we were out at noon and Derek's speech started to become slurred intermittently. His oncologist happened to call while we were out and she said that if it worsened to call tonight. Thankfully after a rest his speech has been fine the rest of the day. That was a reminder to me that even though he is home, he still has a brain tumor and little things may pop up like this just to keep life interesting.
His treatment went fine. The Dr came out after about 20 minutes and said that they had been positioning him that whole time and the treatment would be starting. That lasted about 10 minutes. I would rather they took as long as the need to position before sending radiation in. Derek has not had any ill effects from the radiation 3 hours ago. He did have an antinausea med onboard going into it in case of nausea. He wanted to get food right away after. I pray they all go as smoothly for him!![...]

Originally posted: December 19, 2015

We had a great day together at home today. Derek is able to walk around with his walker and he seems to be picking up a little speed(all walks and being up and around are followed by a good long rest). We just spent some good time together. A day of family. I loved our time together before but so much more now. I will find myself just staring at him. He smiles. And every time he says "You're special Mom". Which of course gets followed by YOU are special. Honestly. This is not about me. Even in this he makes sure everyone is ok and is taken care of and that they feel good.[...]

Originally posted: December 18, 2015

This morning started with both kids wanting to go down to the Kid Zone for bingo that gets televised to all of the rooms in St Paul and Mpls Childrens. Tom who was doing bingo had planned to have Kate help him again.
Derek got bingo(do you "get" bingo?). Kate did a great job helping to call bingo.
Derek was caught on the way to the Zone by physical therapy and had to walk down the hallway and into the Kids Zone. He had to shoot some hoops and kick a ball with Kate for PT. That was prior to Bingo. He had already done his occupational therapy. He then had more physical therapy later in the afternoon. Because of Derek's hard work and willingness to push himself, he was able to come home tonight and not have to be transferred to the other Children's hospital located near where his radiation will be. Instead, we can drive out daily for him to do an hour of OT followed by an hour of PT with his radiation to follow later in the day. It will be a lot of long days.
We trucked all of out things home and now have to sort through all of that. No word on the blood draw from yesterday. No time for radiation yet, however it is looking like it may start Tuesday of next week. His wheelchair arrived, such a cute little thing. We were shown how to work it and there is a wonderful seatbelt so there will be no slipping out like had the other day on the way to his radiation mask making. We got his meds and supplements squared away and we were done and gone. Fastest discharge ever. So smooth and uneventful.
And then, we just walked out. And just like leaving PICU, I was teary all over again. I have always been bad with goodbyes. SO hard to leave such wonderful people. All of them. They took such good care of Derek and us the whole time. 3 weeks to the day since we got there. That has just flown by.
Derek wanted to eat at Culvers on the way home. We now have to think about where we park so that we can get a child out and into a wheelchair. I am so thankful that we have no snow. No snow to have to push the wheelchair through. I am sure it is coming, but it was so nice to have nice clean paths to go on.
Now to sleep. Tomorrow is a new "normal". For now. That normal will change Tuesday to the next "normal".
Good thing we are flexible, right?
All through this I am so thankful for a little boy with the sweetest disposition. Who, even if he is walking and ends up on his knees from exhaustion(like he did this morning), can still laugh at the situation and himself. So many people would get mad or frustrated, but not Derek.[...]

Originally posted: December 17, 2015

We thought today would be a nice quiet day. Santa and Mrs Claus and the police department were coming at 9 and we wanted to be down there to see them. We were and it was a lot of fun. That wore Derek out pretty quickly so we went back to his room so he could lie down again and rest. He didn't get much time for that as PT came and he had to start working. During one of his PT sessions(he has 2 every day and 2 OT session) he walked around the neuro floor again and he also walked up and back down a flight of stairs!! He was really exhausted after that.
We found out that the spine MRI did NOT show any metastases so that was wonderful news. Thank you Lord!!
We were able to talk to the oncologist for a while. She is still waiting to hear back about more information about the tumor. She also did another blood draw to do more testing to see about further treatment options. No word on a start date for radiation yet. However, Derek may get to come home in the next couple days hopefully.
He has his walker ready to go and his wheelchair will be ready soon as well. But if we cannot be home for Christmas, that is all right with us. We learned many years ago that is does not matter where you celebrate, as long as we are together that is all that matters.
Derek also got the last of his external tubes removed today!
Derek and Kate planted another plant with Leonard who has been volunteering at Children's for the last 29 1/2
years he said. He is very patient and lets the kids to the work and helps when needed. I got to spend a few hours tonight with my AEC family and they continue to amaze me. I have no idea how to thank you all.[...]

Originally posted: December 16, 2015

So today was a long day for MRI's. Derek had about an hour long T3 MRI. That scan will be superimposed with the contrast CT they did yesterday and they will map their treatment route. His 2nd MRI was about 2 hours.
That one was of his spine to look for any metastases. I'm sure they will have that read in the next couple days.
Derek's floor was visited by Mikko Koivu, our Captain non the less, and one of our goalies, Niklas Backstrom for the MN Wild! Derek was having his MRI at the time, but Kate got her picture taken with then and she was put on the MN Wild Instagram page. (Is it called a page? I don't instagram...). That was pretty exciting for Kate.
After Derek had rested, it is always slow to come out of 3+ hours of sedation, he and Kate decorated their gingerbread houses that was a craft that was delivered to the room yesterday. Already completed houses and the each had a cup of frosting and a bunch of fun candy item to decorate with. They had a blast sitting together, talking and decorating. Love that.
Derek was also todays winner of the 4th Day of Christmas present from the Ronald McDonald House. He won a stack of crafts! It has been a good day.[...]

Today we got to drive Derek to the radiation treatment hospital to get fitted for his mask that will immobilize his head. It was quite the adventure having to maneuver the wheelchair, get him into the car. We got to the hospital and got him back into the wheelchair, I made it into the hospital and Derek had slipped down nearly out of the chair! Thankfully he has a good sense of humor and he could laugh about it. We decided that the pillow we used for comfort under him was working against us and we got rid of it. There should be classes for this sort of thing, or at least a tip sheet.
Derek also needed to get a CT scan with contrast to help map out the route for the radiation. That CT will be overlaid on the T3 MRI that he will be having tomorrow. He was very brave. To make the face shield, they laid this warmed sheet of plastic on his face and then they mold it to the shape of his head and let it cool for 10 minutes. Derek laid as still as could be and stifled a laugh when I asked him if he thought that all of the storm troopers had to be fit for their masks this way.
Mask made and CT done, it was back to the other hospital across town, but only after a trip through the drive thru at Culvers for a corn dog. We got back and ate and Derek and I(mom) promptly took a wonderful 2 hour nap:)
The oncologist stopped and said that she got a little more information on the tumor. It is an anaplastic astrocytoma. That is a level 3 malignant tumor. They are certain that by the look of it, it is typical of a midline high grade glioma. More of the tumor was sent in and they hope to have more information by later in the week. Radiation will start next week. They have to map out the route for the treatment, thus the CT and MRI, and after that they will determine what day they start. We do know it will be next week. They said that his symptoms can worsen initially since radiation can swell the tumor.
So tomorrow is the MRI of the head sedated, that will be about an hour, and then right over for an MRI of his spine, also sedated, to look for any metastases. That 2nd scan will take about 2 hours. Now for a night's rest, but he does have to eat at 2am as he has to be NPO(no food) after that time for the scans.[...]