Day 28 ~ hopefully the last day of DEX for a while

So I am sitting here starting to write this worrying about Brenn. This evening we noticed that through out the afternoon her whole body has swelled significantly and she has sort of stretch dots on her legs and more on her belly, we got direction from the on call oncologist to bring her in to the hospital so that he can take a look at her. So on with the emla cream (so they can access her VAD without pain) and off Scott and Brenn went to the hospital. I'm sure it's just water retention as side effect from the drugs and all the salty foods she has been eating.

It's hard though not second guessing yourself when your child is sick, could I have missed something, could I have done something different, should I have called the doctor sooner, should I not have let her do that or in Brenn's case lately not eat that. I know that I can not go through this journey with Brenn and our family always second guessing myself but today the first time calling the on call I give myself permission to be human. It is very humbling not having control of the fate of your small child, it is suppose to be a parents job to protect your child from harm and here I think of her and we are letting the drugs that will ultimately save her life do her harm. This sucks.....but it is what it is I guess.......I know in my heart that at the end of this journey Brenn will be fine. We will all be fine.

So a quick glance at our day.....Brenn had a visitor today from Prince George, Hayden from her class came by to say hello and bring her a big card from the school as well as some more gifts to keep her busy. She loved looking and playing with them right away, after eating an early lunch with her friend Brenn was ready for a rest as she quickly gets tired (cranky), we were then off to a fantastic coffee shop for a steamed milk and then to the beach as it was a beautiful day here. Brenn sat on a log eating veggies' and dip while Sam played in the sand. We then headed over to the park where Brenn wanted a push on the swing. It was nice to get out today and be in a park and have her do a little something that she likes.

Tomorrow Brenn has more tests and procedures and we will find out what the next phase of her treatment is going to look like. I think that we are all thankful that this first phase is done and that she has done so well with it......good job Brenn :)

It is really nice to hear from so many people that they are following the blog. Sometimes, it feels kind of stale for me to keep repeating myself about what is going on in our life. It seems kind of boring to me, because we are living it everyday. It is really nice for me to write every day though. It is a good download, there is difficulties every day with life as it is right now, but I really do believe that we are adapting to this new life style, and we will get through it stronger, and much more capable of dealing with stress and adversity.

That being said, today was a really up and down day. Brenn was really really tired again today, it was her worst day yet. She is just so tired of being sick, and being grumpy, and hungry all the time. She has such a huge belly, and such puffy cheeks right now. Her body has changed 100% since she started this treatment which is really hard to believe started less than a month ago. Tuesday will conclude the first phase of her treatment, and we are all really looking forward to the change. We really don't know what to expect over the next couple months, but we know that she will no longer be on her dexamethasone (the steroid that makes her eat so much, be very grumpy, and retain water). There in only one medication that we know for sure she will be on for the entire treatment. It is an antibiotic that protects her from getting a specific lung infection. All in all, this first month has been really hard on her with all the changes in her body, and the uncertainty of what is happening to her. She is really happy that she gets so much support from everyone, and loves hearing all the comments that you all post on the blog every day. I think it helps her to know that life will get back to normal again someday, and that this is only temporary. We tell her that she is going back to school again next year, and that when she is done the first 4 phases of her treatment, we will be able to go back home, but being in it everyday, it is hard for her to believe that that will actually happen.

We started the morning off by my Mom and Uncle Allan showing up at the house just before 7 this morning in preparation for the Child Run 5 K. This run is in support of the oncology ward at Childrens Hospital. I pushed Samantha in the stroller, which was really tough because there was 6000 people that ran this morning. It was great! My Uncle and I were able to run together throughout the entire run, and crossed the finish line together. There were so many small kids in the race, all running 5 km, we were very impressed. the course was quite hilly, and there were kids that were Brenns size running the whole thing. It was quite different from the races that my uncle and I usually do and it was a blast. We are already looking forward to running it again next year. However, my uncle says that next year he will be riding in the stroller, while Samantha runs. We are going to have to see about that one.

We walked down, and home after. On the way home, we saw a squirrel fall 80-100 feet out of a tree on the way home. It landed with a thud, jumped back up, ran to the same tree that it fell out of, climbed back up 5 feet and stopped, looked around, like wow did anyone see that! It was really funny. Once we stopped laughing, and got back to the house, we had lunch, and a bit of a rest, then we went out for a few things, before coming home for bed time. All in all, it was a pretty good day.

Scott

Day 26

Wow the sun was shining all day today and it was warm. Scott took Sam for a run and Brenn and I drove down to meet them at the beach. It felt so good to take our shoes off and feel the sand in our toes, watch the sail boats, people playing frisbee, and the girls picking up more shells.

Brenn's energy is pretty low today as is her mood, even having a wonderful dinner brought to us by Scott's cousin James and his wife Courtney didn't cheer her up. She turned down dessert and headed to bed by 6:30. Shortly after getting Sam into bed I shewed Scott out the door with his cousins to get a much needed and deserved break. On that note I am off to bed as well to get some sleep..

Today was a great day. We had a lot of fun. Right away this morning, we called my Uncle Allan, and made arrangements to go out to his house for a lunch time visit. I was having some emotional issues this morning, but Christine and I were really able to just talk about it, and once I downloaded to her, the rest of the day went really well. My Grandma is staying with my Uncle Allan this week, so, when we got there we got to spend some time with her before my Mom, and Uncle Lyle came over. It was really nice just to sit down to a nice relaxing lunch with quite a bit my family and just forget about everything for a while, and be in a more normal environment.

After lunch, Uncle Allan and I took Samantha to the park for a very lively 3 hour play session. It went by so fast, that we decided to stay for dinner at my uncles, however, we both forgot that Christine had plans tonight to get together with her cousin. So when we got back to my uncles house, we fed the kids a snack, put them in the car, and drive home leaving my uncles at about 4:30 dreading the traffic. For some reason, either everyone left work early today, or stayed late, and we sailed home. Samantha fell asleep in the car just before we got home, and I had some trouble waking her up, so when it was time for bed tonight, both girls went down really easily.

So all in all, not much to report today, just a great day, and I think that we are all feeling a lot better for it.

Scott

well, today was a better day. I was really tired again today, but it turned out to be a sunny afternoon, so we tried to make the most of it. This morning, Brenn was off to school at the hospital, Christine had to go do some running around, so Samantha and I decided to take a train and boat ride over to the Lonsdale Quay. We had a really nice time together, just the two of us. We had some lunch, and she played in the ball pit for a while and had a chance just to be a kid for a while. I think that it really did her some good. She was very tired this afternoon, so, it must have done something for her. After we got home, we had a little down time in our room, before heading to the beach.

All three girls went walking down the beach to find some shells, and other beach paraphernalia, while I sat and guarded all the snacks that the girls ate when we got to the beach from the crows and seagulls. The girls had a great time, and I got to watch some sail boat racing while they were on the beach. Once they got back to the car, we ended up feeding the left over snacks to the seagulls anyway, so I guess I could have joined them on the beach, but what do you do? Sam fell asleep in the car again on the way back to the house, so, we ended up driving for a while again today. We drove out past the university, and in the sunshine, everything was very beautiful. It was very uplifting to see the sun today after 2 weeks of rain everyday!

I got a phone call from Vicky Kibble today, Brenns principle. She told me that they had a bottle drive, and a twoonie drive for Brenn, and that they were both very successful. I am really blown away at the generosity of people. Cedars Christian School has been not only a wonderful school for Brenn to attend, but also a huge support to us since Brenn became sick. It is wonderful to know that so many people have really come together to help Brenn out. She has only been attending Cedars for this year, as she is in kindergarten, and the amount of people that have been behind her from Cedars is mind blowing. We really would like to thank everyone who helped with the twoonie and bottle drives, you really don't know how much it means to us not only financially, but spiritually as well. We are really starting to understand how this is going to effect our family right now, we are almost through the first month, and, now it is setting in, that this is going to take a long time, and we might have to be separated through some of it. Finding out about Cedars raising this money for us today, and sitting and thinking how many people must have been involved in it to pull it off really helps us to stay focussed and helps us through some of the stress, and frustration. Thank you all so very much, we have been so blessed by you all. I am coming up to Prince George in a couple weeks and would love the opportunity to say thank you to as many people as possible in person.

Thanks also for all your prayers, they are all felt by us as Brenn is doing so well with her treatment. She is frustrated, but we see that God is really healing her little body. Her treatment is pretty tough on her, and it would be so hard if it wasn't for all the support that she gets she is an amazing little girl, and God does work miracles!

Scott

Today was a hard day, at least for me. It really is a blessing that the whole family is together, and we are able to go out and do things for the first time in a month. We were able to go out for lunch today at Earls. They were very nice and made a table up for us that was way in the back with no one around us, and we were able to sit and watch the rest of the restaurant. After lunch, we went off to Science World, which would have been really fun, but Brenn is just so tired, and Christine and I are both so paranoid of Brenn getting sick, that we were just on edge the whole time. We drove around for a while after Science World so that Samantha could have a nap, then came back to Ronald McDonald house for a nice family dinner.

Brenn is really starting to have trouble with her emotions. Part of it is definitely her medication, but I am really starting to think that there is also something else. When she was just having her problems with her medication, she would be inconsolable for maybe 10-15 minutes at a time, and she still does get spells like that. Now though, she is starting to have some problems that she is consolable during. Tonight at dinner, again there were lots of people around and she started to get upset, so I took her into one of the rooms on the main floor where no-one else was, and I talked to her, and calmed her down. She said that she was still hungry, but didn't want to go into the kitchen until everyone else was gone. It is really tough for her to talk about what is going on with her, she is still only 5 years old, and I think sometimes she still has trouble understanding her feelings, and then putting them into words so that she can talk to us about them. We are really trying to balance some discipline, and also a lot of compassion with her, but it is hard not to get frustrated sometimes when she is inconsolable. We love Brenn and Samantha so much, it is really hard to see them going through this.

Samantha is having a hard time being away from home for so long as well. It really is easy sometimes to overlook how she is feeling. Tonight when I put her to bed, she asked me tearfully when we were going to our real home. We still don't know. I do have to go home soon, and take care of a bunch of things that we are not able to do from here, but I think that is still a couple weeks away at least. We are not ready to be separated quite yet. There are still to many things going on, and we all need each other for support.

Anyway, today was a tough day, tomorrow is a new day. It will be better.

Scott

We got Samantha back today. Wow, she is still the whirlwind that we remembered her as. She has only been gone a couple days, but it sure seemed like a lot longer.

Brenn had a clinic day today at 11:30. It was the first time that we went to clinic that she didn't have to get a lumbar puncture and spinal. That means that she was able to eat a normal breakfast, and she wasn't grumpy all morning. She did have to get her IV chemotherapy today, which really takes the wind out of her. She was really lethargic all day afterwards. She also has been starting to have some trouble walking. This is a normal side effect of the drug called Vincristine. She has a pair of pink cow girl boots that she really loves, but we have to go buy her some new shoes today, that are a little easier to walk in. She is to the point now that she does't even care. She is getting really weak, and really tired, but she was happy that her sister is home, and we are back together as a family once again. All of Brenns blood counts are way up from last week. On Friday her ANC (the part of the white blood cells that fight infections and colds) were 0.75, the normal range is around 6-14. Today her ANC was an astonishing 3.34. This means that we have a lot more freedom to go out into the community and do some activities. We have finally convinced Brenn that it would be better for her to ride in a stroller so that at least she can get outside and do something rather than just sit for hours during the day at the kitchen table or in front of one of the TVs here. She walks for a while, and when she gets tired then she rides in the stroller. You wouldn't believe the looks we got today while walking through Karidale with Brenn riding in the stroller, and Samantha walking along beside it. Brenn looks fairly healthy right now, her hair is definitely thinning, and she looks tired, but if you didn't know her, you would think that she was a healthy kid.

We had a good day today. Like I said we went and got Brenn some new shoes to help her walk, which also meant that Christine and Samantha got new shoes (they both really needed new shoes as well), and went to a candy store with the girls. It turns out that the owner of the candy store also sends baskets to the Ronald McDonald house and that she used to volunteer here. It is a pretty small community around here. We were only at the hospital for a couple hours today, which was a nice change from the last few days. Brenn is really a remarkable girl. Because of her recent mobility challenges, we were seen by a physiotherapist while we were at the hospital today, and Brenn was able to do all the movements that were asked of her. Her range of motion is still very good, however her strength is really waning. For all that she has been through, she is amazing.

We were worried about a fever today, it was a little high this morning, and a little higher when we were in the clinic, so we were really watching it all day, but it seems to have gone back down somewhat tonight. We are still keeping an eye on it, but once again, it seems to be taking care of itself, all on it's own. We are still getting loads of prayer, and moral support, and this has really been important for us, we really want to thank everyone, once again for all that you all do. It is really great for us to know everyday, that out there in the real world, people are thinking about us, and care enough about us to keep us in their thoughts and prayers every day. We love you, and really look forward to seeing each and everyone of you soon.

Scott