Today was clinic day today! Christine also had an appointment with her old doctor here in Vancouver, so it was a bit exciting getting everyone ready and out the door this morning. Once we figured everything out, things went really smoothly. Brenn had a Lumbar Puncture this morning, so she was not allowed to eat, and her appointment was not until 10:00 am, so she was pretty hungry, and a little cranky. She did really well despite her hunger, and we sailed through the clinic in about 2-1/2 hours. This was great! We were also told that we would not have to go to the clinic at all next week! The good news just keeps on coming. The doctor also said that if we wanted to take a quick trip somewhere like Whistler, or Kelowna that it would be okay as long as we informed them before we left and let them know where we would be and for how long. The next phase of treatment (which doesn't start for another two weeks) looks pretty easy also. Our head oncologist told us to take this time, and really try to enjoy ourselves because the last 2 months running from mid September through mid November will be tough. I was really hoping that we would be back in Prince George for Brenns birthday, November 6th, but I guess we will just have to postpone her party until we do get home.

We are now feeling antsy, and really want to get out and see what is going on out there, but it is also a little intimidating. We were planning on possibly going out to Campbell River for a few nights, but just found out that Grandma is sick, so we will be postponing that trip for a while. Whistler is an option if we can find somewhere to stay for a couple nights. Brenn really likes Whistler, but will have to wait and see. Kelowna really seems far right now, but hey, they have a really good cancer clinic there, and we would feel a little more safe knowing that. It's been quite an intense couple months, and the new found freedom is scary!

Today was a great day after we got out of the clinic. We went and visited Ryan (another little boy with ALL from the house) he was in the hospital last night, and will be staying tonight, being released tomorrow if all goes as planned. After that, we went and had a celebration lunch with Brenn, before coming back to the house where Uncle Allan was dropping Samantha off. The kids were in good moods, however tired, and went to bed really well again tonight. It's really felt good to have the kids back to normal for the past few days, and we are really all enjoying one anothers company. Now Christine and I are going to have dinner together, as she was at Yoga again tonight. Good night.

Scott

Well, I was really worried about how the day was going to go today. The girls didn't go to bed until just after 9 pm last night, I am not sure what the problem was, they just didn't want to sleep, or one of them was keeping the other one up? We had to get up at 6:30 this morning in order to get the car to the mechanic on time. We had some brake work, and an oil change done. It is amazing how quickly almost 2 months has flown by! I was really surprised when I realized I already needed another oil change a couple days ago. It really is hard to believe how different life really is compared to two months ago now. Everything seems so distant, it's like it was years ago.

The girls turned out to have a pretty good day today. They were both Daddies girls today, so I was quite happy with that, and Christine I am sure was happy with the bit of a break that it afforded her. Putting the girls to bed tonight was a bit of a challenge though, they were both really tired, which made them very cranky, but I think they will go down quickly.....We have our clinic day tomorrow which means another early morning for the girls, so with any luck at all, they will get a really good rest today, and feel great in the morning. Samantha has another day with Uncle Allan. I always feel bad that Samantha has to go out somewhere while we take Brenn to the clinic. She is always so sad that she has to leave, however she always has a great time with Uncle Allan. I know that a lot of Sams anxiety comes from these days, when she knows that Brenn is in the hospital, and she has to go somewhere else. I know that she knows Brenn in getting needles, and a bunch of procedures done each time, and I am sure she wants to be with Brenn during them, but there is simply no way that we can accommodate Samantha at the hospital beside the fact that they do not allow siblings during procedures.

Our family is getting a lot better at dealing with a lot of these day to day issues, but it is still really hard emotionally when you stop for long enough to think about what Brenn and Samantha are both going through right now. They are such great little girls, that bring so much joy into our lives, and now they are thrown into so much turmoil. We pray everyday that they have a good day, and that they get to do one really fun thing everyday. We really are blessed though that they are such easy girls. We went and bought a little kite today, and tried to fly it on Kits Beach. For the first time since we have been here, there was no wind on the beach, and just a word advice, $6.00 does not get you a very good kite...ours broke after the 5th or 6th try to get it into the air. You win some, you lose some I guess. I am going to try to fix it, but if the material to fix it is more than a couple dollars, it's just not worth it. We had a blast on the beach today anyway, the kids got wet, and had to ride home in their underwear, totally soaked. They had a bath when they got home, dinner, and now bed. Christine is a hot yoga again tonight, and I plan on going for a run when she gets back, then a little time with Christine, and then bed for us to. Good-night

Scott

Today was another great day. The girls and Scott went for a walk in Yaletown while I got my hair cut, while walking they cashed in our lottery tickets and went for lunch with the winnings. I guess it was good as both girls and Scott told me how yummy it was. After the haircut we had to race to see my old doctor, Sam poked me in the eye this morning and I was having a few concerns with it....turns out I have a significant scratch on my cornea. Ouch....... it hurts every time I blink my eye, thank goodness it only takes a few days to heal. Brenn played with Sam and the other children in the house during the times we weren't running around for me. She is developing strong relationships and is always on the go now.....long cry from the little girl a few weeks ago that just sat at the table and ate or thought about food all day.

The house had another family dinner tonight BBQ hamburgers and hot dogs......it's so nice that there are people out there that care enough to donate their time to the families that access the RMH. It makes such a difference for us here. Well that's it another day, nothing new to report.....which by our standards is fantastic, that means that Brenn doing well. Good night all:)

We had another great day today. Brenn and Samantha had a really good sleep on their old 7 pm-7 am schedule last night, so they woke up in a great mood, and stayed in a good mood all day. There are going to be some continuing issues with Brenn working through the things that are going on in her body, and Samantha working through why all of this is happening, but starting with good sleeps, hopefully we will be able to help them both out more.

We had Hanna with us again today. She gets along so well with both of the girls, it's really great. She fits right in with our family, it's almost like the kids having an older sister. Hannas brother was diagnosed with ALL about 3 days after Brenn, and has been having some leg trouble last night and today, so has been in and out of the hospital for the past couple days. He is starting to feel better now, but still has a bit of a fever that we are all anxiously watching. He is a really tough kid though, and I am sure he will be fine by tomorrow. Kids are amazing in their ability to rebound from trouble.

Christine, the three girls and I all went out this afternoon looking for something to do. We eventually ended up going to Ambleside and watching all the people fishing from the pier. The girls got to play with a couple of little eels, through some rocks, play in a park, and do some beach-combing. It was a lot of fun for all of us, and while we were there the weather improved a ton which just made things better and better for us. On the way back to the house, we were driving down north west Marine Dr. and a Lamborghini drove past us. We were all admiring the car when we noticed that it had an 'N' on the back...are you kidding me? This kid has way to much money! Nice car, but I am not sure that anyone should learn how to drive with such an awesome piece of technology.

We decided to go out for dinner on the way home, and went to one of our favorite restaurants that holds a lot of memories for Christine and I, called Los Margaritas on west 4th. We had a really delightful dinner, and then headed home for some play, and finally to put the kids to bed. At the end of this day, they should all be quite tired and looking forward to another long sleep tonight. Hopefully this will work out so that we will have another good day tomorrow. Thanks again for all the prayers, we appreciate every one of them.

Scott

PS, Morgan Issac could you please send me your e-mail address?

Today was a pretty fun day here. We started out pretty relaxed, while Christine went out to go to 'hot yoga,' the girls and I played around the house, and did some of our chores. Christine had a great time at yoga today, she went with one of the volunteers from the house, and it sounds like she will be going at least a couple more times throughout the week. This is great news! She really needs to have some time for herself like the rest of us get.

Once Christine got back, one of the other families in the house that we have really bonded with, went for a walk to one of the many parks in the area, and played for quite some time. It was beautiful out this afternoon. It was sunny and the perfect temperature. We all had a really great time, right up until about 50 meters from the house on the way back from the park, when Brenn fell and skinned her knee. The cut that she got was not to bad, it bled a little bit, but it really was pretty minor. I think that as a result from all of the medication that she is on, as well as all of her pent up emotion about all the she is going through combined with the scraped knee was a recipe for a major break down. We tried to make her feel better, by cleaning her knee and bandaging it, which worked really well until the point that we put on the band aid that she asked for. She started screaming, and would not stop for over an hour. Both Christine and I (especially Christine as she is way better than I am at this kind of thing) tried to settle her down, to no avail. Joe and Debbie VanCalsteren also tried to calm her down when they phoned, which did help some, but it was really hard. Brenn just wanted to cry for a while, so in the end we took her upstairs, away from the few people in the house, and let her go for it. Once she was done, it took her a while, but she stated playing, and talking, and eating her dinner again. So all in all, it was really not a big deal. I just hope that she is okay emotionally, seeing her unable to stop and just wanting to cry things out for a while was pretty hard, and I really hope that it helped her feel better. It's hard sometimes remembering through all that is going on that she is still a 5 year old little girl, that sometimes has trouble working through her thoughts, feelings, and the things that she is afraid of, or doesn't understand.

I would really like to take a second and really deeply thank everyone up in Prince George for everything. It was really great to see just how many people came out to really help Brenn. Everyone from Cedars Christian School, Ospika Heights, Westwood Church, Simba Motors, Integris Credit Union, Centre City Electric, and all of the individuals who have put in such a colossal effort in helping out our family. It was incredible to see. Everyone that I got a chance to see was amazingly supportive, and I thank everyone for all of the dinners, and lunches that you all so graciously supplied for Samantha and I. I realized when I got back down here, that I had not turned on my stove one time. In fact the only thing that we ate at the house was yogurt, cereal, and yogurt drinks! Everyone that I didn't get a chance to see, I am really sorry, I would love to see everyone, but I really did have a very truncated trip north. It really would have been great to have a couple more days in Prince George, but I really felt that it was important to spend as little time as possible up there in order to get back here with Christine and Brenn. I am really looking forward to seeing all of you again soon.

Love the Smith Family

Samantha and I are back in Vancouver!!! We had a pretty hard time getting to the airport this morning, but it all worked out, and we made the flight that we wanted. Peter, Sandy, and Conner were on the flight with us, and ended up sitting in the row right in front of us. It was quite nice to have them on the flight as well, just to have someone else to talk to. The flight was good, and we were really excited to get back to see Christine and Brenn.

We all went out for lunch, and Brenn sat in my lap for most of the time, it was great, just to get the cuddle. It was a beautiful day here in Vancouver. The sun was shining, the beaches were packed, and there were people walking everywhere. We came back to the house after lunch, in order to meet my mom here, and then after a while, we decided to go down to the beach to get some fresh air, and feel the sun on our skin. We got to the beach, and both girls were starting to get a little cranky from lack of sleep most likely. Brenn had forgotten her hat at home, so we gave her one of the two hats that Samantha had in the car. Only one of the hats fit Brenns head, unfortunately, it is Samanthas favorite. This started a huge war, and both girls ended up getting really upset, and both were really uncontrollably crying, so the trip to the beach was ended before we even got to the sand. Oh well, I guess there is always tomorrow. This is one of the hardest issues that we have with the girls right now, we are really trying to balance our attentions, and keep both kids happy, but they are progressively getting more stressed, and this leads to more and more crying. Being away from home for so long with all the changes has really been hard, and this will likely be an issue for the rest of our stay down here. Hopefully we will be able to get to a point that it is manageable though. I just pray that the kids are happy and healthy, and we can deal with the rest!

Any way, it's been a really long day, so I will sign off, and talk more tomorrow.

Scott

2 days wrapped up in one

Brenn had a good day yesterday, she had clinic in the morning which lasted a whomping 5 hours as they could not get a blood return from her VAD, after many different try's, an x-ray and some "draino" (blood thinner of some sort) they were finally able to get some blood to do her CBC. She got her LP and latest dose of chemo, the doctor used a very fine needle to puncture the membrane to retrieve her spinal fluid and to inject the chemo. Brenn had to lay flat for two hours afterward, as well was prescribed a cafe mocha in hopes that she would not get another weeks worth of spinal headaches. She hated the laying flat and after 3 sips of her specialty coffee she loved it....eeeekkkk. The rest of the day was spent watching a movie in our room and then dinner and craft night with a volunteer that comes once a week to do different projects. All in all a good day again.

This morning Uncle Alan came to spend sometime with Brenn, the house had passes for the suspension bridge and Brenn really wanted to go....so after calling our nurse to check Brenns' counts (as we did not stick around long after she gave blood to get her counts yesterday) Brenn and Uncle Alan headed for the bus. Yes that's right the BUS, Brenn's counts were so good she got the okay to ride public transit, she has really wanted to this since arriving in Vancouver. When arriving back at the house 4hours later I was informed that Brenn had a fantastic time. She spent her time walking around the bridges, climbing in the tree house and exploring the entire suspension grounds, as well she rode 3 buses, 2 sky trains and 1 sea bus. Tonight we will be having a Greek family dinner and both of us can hardly wait...yum yum. I have no doubt that Brenn will fall right in bed exhausted after her bath after such a fantastic day out with her great Uncle :)

Today was a really busy day for Samantha and I, I am starting to feel pretty bad for the poor kid. I have been dragging her around all over town visiting, and taking care of a bunch of things, and generally running her off her feet. She has fallen asleep in the car the last three days in a row. I am hoping that tomorrow will be a slower day for her, so that we can get in some real Samantha and Dad playing time. It has been really great to see everyone on the other hand. It is really encouraging to us all the support that we are receiving, it really is absolutely unbelievable!

This morning, we went to Cedars Christian Schools final chapel of the year in order to just say thank you to the school. They have done so much in helping us and supporting Brenn, it is really neat to see all the kids so inquisitive about Brenn, and all asking if she is doing okay, and when she is coming home. It really seems like Brenn has become somewhat of a school mascot, everyone loves her, and wants her to get better. The chapel was really nice, I got to meet quite a few people that have really been, and will be supporting Brenn over the next little while. I got to see the grade 6 grad class, which included Brenns 'Big Buddy,' Morgan Isaac (Brenn really misses you). The amount of effort that the school, and the students have put forth to help our family is unreal. We are truly blessed by God to have Brenn going to such a great school. The environment is so positive, and all the kids and staff are really great. What a privilege to have such wonderful people back home always praying, and wishing us luck. I would really love to say Thank you to everyone from Cedars, we are forever grateful.

The rest of the day was really busy as well, we had lunch with Jeni and the girls, before heading off to Dr. St. Roses office again to get Samanthas lungs double checked. We were given another prescription, and reassured that Samantha was NOT sick, and therefore not contagious! Thank God, I was worried this morning, that we would have to stay in Prince George longer than planned. Sam and I both really want to get back down to Vancouver and be with Christine and Brenn again really soon. After the doctors office, we went over to the shop where I work to see all the guys I work with, which was really nice. Samantha played with Ian (my boss) for quite a while. She had a pretty good time there, I think that she likes playing there, there is a lot of stuff to get into.

After the shop, we went over to Jack and Erins house for dinner. They made chicken, some really yummy potatoes, Caesar salad, and some pie. By the time we all stopped eating the main course however, we were all to full to tackle the pie. It was really nice to spend some time with them, they have worked tirelessly helping Brenn, and our family, and it was great to just touch base with them, and have a really enjoyable evening. Samantha played with Hunter, and Logan and seemed to have a really great time as well. All in all it was a wonderful, and draining day.

Scott

Today was the first full day that Samantha and I were away from Brenn and Christine. It is tough being so far apart, and we are constantly in communication, as I really want to be kept up to date at all times, I think my wife thinks I am crazy, but I'll live with it. It really has been wonderful being home and seeing all of the people that I have seen so far. Everyone has been so helpful, and encouraging that at times, I really feel overwhelmed, but in a really great way.

We had a barbecue with all the families in our community tonight. It was really amazing! I noticed right away, that all of the people who live here were a lot closer than I can ever remember. Everyone was talking with everyone else, and it really felt great to be part of such an amazing group of people. When we first moved into Ospika Heights, we were told that this was a different community were people knew their neighbours and felt safe letting their kids run around outside. Tonight I really got to see what was meant by that. After we found out about Brenn, the families of Ospika Heights got together, and tried to come up with a way to support Brenn. They had a big garage/hot dog/bake sale, and raised $2500.00 for our family. Talk about a shocker! I was totally blown away! It is really hard to process how so many people care about Brenn and our family. I really am shocked at the total outpouring of support, I know that I have talked about this in the Blog many many times, but I just don't feel that I can properly convey how I feel about this. People are so good, it is hard to imagine that in day to day life we can ignore one another. I wish that everyone could feel the support that you all are giving us, because it really is life supporting to our family. Every prayer that we receive, every thought, phone call, and e-mail really does make a world of difference to us. I just don't know what to say. Thank you all very very much, and please know that you are all special, and loved by us.

Brenn had an okay day today from what I understand. She threw up this morning for the first time, and it really made both Christine and i upset. The things we are putting into her little body to make her better in the long run sure don't make it look like she is getting better in the short term. After she threw up though, the rest of the day was pretty good. She had some visitors this morning for a short while. Nicole, who had helped out so much at our house (even taking Jerry the cat into her house), and family stopped by for a visit. Brenn was not up for it this morning though, and was done with visiting after only about a half hour. They went out for lunch, and then went to the park with a photojournalist who will be following our family through our journey at RMH. They had a delicious sounding family dinner tonight, and they both went to bed early. As for Samantha and I, we had a really busy day visiting, and doing a lot of the things that I came up here to do, but I think we both feel a lot better today after spending one night in our own beds, looking forward to another sleep tonight.

Scott

PS, I have looked into actually doing a post, so here are the steps

1. click on the comments link at the bottom of each post

2. write a comment in the available space

3. underneath the comment area, there is a 'Comment As' area, click on the drop arrow, and select 'Anonymous' if you do not have any of the other accounts

4. click 'Post Comment'

please let me know if you are still having any trouble, and I will attempt to rectify any difficulties

Hummm I still haven't gotten the hang of this blog thing yet as i just spent the last 40 min. typing a lovely entry and somehow on the preview of it I erased it all....blaaaahhhhh. Okay a shorter version now.

Brenn and I got up late as we made up for some lost sleep this morning when Sam and Scott left at 5:30 in a cab headed for the airport to catch the first flight out of Van. Our day was pretty lazy as Brenn had a headache again and we were advises to have her lay flat on her back most of the day....ha ha ha that is really funny....first of all Brenn does not like to lay down for anything and second she's 5 and after the Advil kicked she thought that I made the whole thing up about her laying down as now there was nothing wrong with her. So we compromised a little bit throughout the day and we were both mildly happy with the outcome. Turns out movies, PSP and game boys, coloring, music and treehouse only do the trick for so long. Well after dinner the house had a special guest, Alex Lacrasse he is a new up and coming singer/song writer who graciously did a private mini show for the guests of the house. Brenn enjoyed the music and got a signed poster afterward.....all in all a good day for us...no hiccups :)

Scott and Sam made it to PG safely, they had a busy day when they got there. Went to see Brenn's class, Sam had a doctors appointment to take care of her allergies, dinner at Joe and Debbie's and then home to bed......how nice would it be to sleep in our own beds....luck ducks :)

This will be my last post from Vancouver for a few days, Samantha and I are headed out to Prince George in the morning, we will be returning on Friday or Saturday, we are not sure yet, we will find out when we book our return flight. It is hard to say how I feel about leaving, we have been rushing around for the last couple days getting ready, packing up a bunch of stuff that I can take home, and just the general run around. I booked our flight this afternoon, and now it is kind of seeming real, I am excited to come home for a few days, but I think that it is really going to be hard not only to leave, but to be away. It seems like we have been down here for so long, together everyday, involved in our battle together, it is going to be really weird to not be here. I will be missing a clinic visit on Wednesday, and I just pray that the rest of the week goes by without any other problems arising with Brenns health. If she makes it through this week, it will be the first week that there has been no hiccups. I feel hopeful that she will be able to make it through, but if you could all please pray an extra prayer, it would be very much appreciated. I am pretty scared about not being here!

Any way, the last couple days have been pretty up and down, as I said in my brief post yesterday. Brenn has been experiencing some headaches that seem to be quite bad. They feel better when she is laying down, but are quite bad when she is sitting up. I talked to one of the oncologists yesterday, and they think that it is from her lumbar puncture on Wednesday. We talked to a couple of different people around the house, and from her symptoms they all seem to agree. When I talked to the oncologist, she suggested that I give her Advil. It is unusual to give a cancer kid Advil or Tylenol because they can mask a fever, that can potentially be very dangerous. When I talked to the doctor though, she asked if Brenn had been experiencing any fevers. I said that she had not, so she gave us the okay to use Advil, making sure to more closely monitor her temperature. As it turns out, we have only had to give her the Advil 2 times, so we are a little more comfortable with it. She seems to experience her headaches in the morning and they last into the early afternoon, so with any luck, Christine will only need to dose her one time, if at all tomorrow again.

We had the RMH gala last night, again this is why I skipped the post last night. It was a lot of fun. One of the donors to the house puts on the gala every year. The man who does it is very nice, he has no relation to the house, he just feels that it is a worthy cause, and so puts forth a lot of time, and energy make sure that people have what they need here. There was a magician, and a clown there to entertain the kids, and lots of food and a small bar to entertain the adults. The clown and magician were great! The clown made very elaborate balloon objects for each kid. He was working for at least 2 hours to get them all done. He made a couple of the kids space suits with helmets, and headsets, chest and leg armour, he made a school bus, 4 foot long magic wands (these were for Brenn and Samantha), as well as many other things...he was amazing. The magician was also great. Before dinner, he came around to all of the tables individually, and put on a little show. I was watching as closely as I could, and could not see how he pulled of his tricks, he was amazing. After dinner, and the clown, the magician did a full show for the kids that lasted about an hour. He made a couple of doves appear, and then turned one of them into a rabbit. His tricks were good, but I think his entertainment value was much higher. The distraction was well received by all of us at the house, and we are all very thankful for such generous people. Without the generosity of people, our present situation would be very very difficult indeed!

Yesterday was a really nice day though, we were able to see Brian and Beth Hillhouse for breakfast, and a nice walk before heading off to my Uncle Lyles to pack up some of the stuff that we are storing there. I guess that I brought a bunch of totally unnecessary things from Prince George when I came down. I can't say that I was thinking straight though. My cousin Trevor, his girlfriend, and her twin girls came out to see us my my Uncles house as well. It was really nice to see them. We all hope that we will get to spend more time with him through out the summer. They are from Naniamo, and so far, we are not allowed to go there. Maybe next month, we will have to see what the doctors have to say about that.

Today, being fathers day, was a pretty lazy day. We hung around the house, and changed rooms. It is always a lot of work to change rooms, but in this case, it really was worth it. I am going to be able to sleep in the same bed as Christine, and the kids have their own places to sleep. Brenn is sleeping on a pull out couch, and Samantha is sleeping on a window bench seat. There is a railing that is used to contain kids when they sleep there, and Samantha really seems to love it. They are always playing house, or hospital, or whatever, and she always wants to play the baby, so she is calling her new bed her crib. It is pretty funny. I think that she is really looking forward to being home for a little bit. She really doesn't understand all of this, and it really shows sometimes. She is increasingly hard to talk to, because she is really trying to get attention again, but I guess this is just another one of the small things that we will have to figure out together over the next little while. It was really hard to notice this change in Samantha, but now that we know about it, I think it might be equally hard address it. Time will tell, and I hope that the trip to Prince George will help. See you there.

Scott

PS, I played around with the setting, it should make it easier to make comments, please try it out, and let me know. Also, I have to re-activate my internet at home before my phone will work so I may not be available during the day tomorrow, but will get it hooked back up as soon as possible. They know about our situation, so it should be no problem at all.

Had an up and down kind of day tomorrow, but it is late, as we had the RMH Gala tonight, so I will give updates tomorrow...

Scott

Today was a pretty lazy day. We got up in the morning, ate breakfast, and took Hanna off one of the other Moms so that she could take her son to the clinic in peace. Brenn and Samantha love playing with Hanna also, she is s 9 year old girl that loves to play with stuffed animals, and play hospital. All three of them play together every day that Hanna is here all day long. Hannas mom had to stay in the hospital with her son for quite a lot longer than expected, so we ate some lunch here at the house, before heading out to the beach to enjoy some of the beautiful sunshine that today had to offer. It was really windy at the beach, but it didn't seem to temper the kids enthusiasm at all, so we played for about an hour, ate our ice cream and left. Samantha was getting pretty tired, and we hoped that she would have an afternoon nap in the car on the way back home, but with Hanna sitting beside her there was no way that she would sleep.

Sams lack of nap really spelled disaster for the rest of the day. She was really over tired from playing all day. She is the one that is always running around at top speed while playing with older people, so when she plays like that all day, we are really in for it. It all started to go bad around 5 o'clock this afternoon. There is a bee hive underneath the play house outside, and when I noticed that there were still bees flying in and out of the hive, I got the girls to come inside. Christine and I are really protective with the girls around bees as we are both allergic to them, and especially right now, we really don't want to find out if the girls are allergic as well. Samantha wanted to stay outside and play, but once she was inside, and settled back down, she played with some stuffed animals downstairs for a while before dinner, but she was really tired. Once I asked her to come upstairs for dinner, she lost all control. Christine ended up taking her upstairs for a little while, while Brenn and I set the table, and got ready for dinner. Somehow, amazingly enough, Christine got Samantha settled down enough to come back and eat some dinner. We all ate together, and got the girls to bed as quickly as we could.

We are all more and more tired it seems as time goes by. We are all really hoping that while I am in Prince George with Samantha, that we will all get to catch up on some sleep. Also, we are moving into a new room on Sunday that seems to be better suited to our families needs. There is a small bed for Samantha, a pull out couch bed (which for some reason, Brenn loves these beds), and a double or queen for Christine and I. It is going to be great to sleep in the same bed as Christine again. It has been so long that it doesn't even seem real.

Tomorrow night is the houses summer gala party. All the families from the house are going to the Bayshore hotel for and evening with clowns and magicians, lots of food, and most parents are really looking forward to the open bar. We are not allowed to drink while we are in the house, so it will be a rare treat to drink a beer and relax for a little while. RMH is really good at creating enough distractions that you sometimes forget why you are here. It's really hard to get away from the fact that you are here because your child is sick, but it is also a really great support structure living in a house that has so many other people who are in a similar situation. We all feel for one another when things are not going right, and we are all really happy, and a little nostalgic every time that someone gets to go home. We are all awaiting the time eagerly that we get to go home, or have a small visit from someone familiar.

Once again, I would really like to thank everyone for all your thoughts and prayers. It really helps us knowing that there are other people out in the "real" world that are still thinking about us. It would be really difficult without all the support that we feel everyday spiritually, mentally, and financially. Thank you all.

Scott

We saw Patrick, Marlene, and Joshua today. We met them at Stanley Park this morning, went for a walk in the cold and overcast. It was quite pleasant. We were only able to stay with them for about an hour before we had to leave. We know now that Brenn can only take so much, so we said goodbye, and came back to RMH, knowing that we would see them again tonight for dinner at my Uncle Allans. Brenn is continuing to surprise us every day with her increasing energy though, after a short rest and a bit of food, we took off and went out to Uncle Allans house. Brenn and Samantha played pretty hard, which of course surprised us, because just a couple days ago, Brenn would only be able to play for about 15 minutes at a time. She is now able to play with some gusto for about an hour or more. Her medicine from the last round is wearing off day by day, and changing her back into the girl we all know and love (not that we don't all know her when she is all crazy on her drugs, it's just sad that she has to be like that, and it is a constant reminder that things are not all right in her body). Her new medicine doesn't have as many side effects as last months medicine, but it is the medicine that she will take during her maintenance round which is the final and longest round. This month, we will most likely be playing with her doses a little bit in order to keep her blood counts low, but also keep her fairly even. It is more a month of experimentation than anything else. It is a bit stressful, and she will have to keep going to the clinic here for blood tests, to make sure things are going well, and to keep an eye on her blood counts, but from what we understand, this will be a small break from her moodiness. However, the doctors assure us, that we will be experiencing lots more side effects over the next 6 months, so, we are to enjoy ourselves this month, while staying close to the hospital, and things should be okay...sounds really nice to me right now. It is a real blessing to enjoy time with Brenn right now, she is such an amazing kid, it is hard to believe now that she is back to being herself how great she actually is...

Scott

Well, I am going to catch up from yesterday and today. Yesterday was a great day at the Ronald McDonald House Charity golf tournament. 5 of us from the house had the pleasure of taking in the day and representing Ronald McDonald house free of charge for the whole day. We arrived at the Westwood Plateaus Golf and Country Club at 9 am and were treated to a huge breakfast buffet, and a free pair of Oakley sun glasses as our gift for being part of the tournament. Once lunch was over, there where two groups, one group left to play the main course 18 hole championship, and we, being part of the other group, started our golfing day with a putting contest. Once that was done, we went up to the 9 hole executive course and had two hours of group lessons, which helped me refine a couple of things. Once the lessons ended, it started to rain, but we went inside for a nice lunch before starting our round. The course that we played was incredibly hilly, and challenging, but the views were amazing. We had a lot of fun, and at the end of the best ball round, we ended up in second place on the 9 hole course, not bad, but only 4 teams finished the round, so take it as you will...we are not the best golfers in the world that is for sure...

After the golfing, we were in for a silent auction with hundreds of items to bid on and a really nice buffet dinner. We were lucky enough to be seated with Steve Darling and Christie Gordon from Global BC News as well. They were both really nice and great to talk to. They also MC-ed the evening, and provided more than a few laughs. There was a set of pink junior clubs that I was trying to get through the silent auction, I had planned to start bidding on them at the 15 minutes to go mark. When they called the 15 minutes left, I hurried out of the banquet room to where the clubs were and found a man standing in front of the clubs with his arms crossed making quite sure that no-one else was going to get those clubs. I thought that there was no way that I would beat this guy, so, I went back to the table to sit down. I told the other guys from the house about this guy guarding the clubs, and Steve Darling overheard the conversation. He told me that he had also been bidding on those clubs, and that he knew the guy who had provided the clubs for the auction. A little while later, Steve got up from the table, was gone for about 15 minutes, and when he came back he asked me if the clubs that I had wanted were pink? I said that they were for my daughter, and he said great. He had gone and talked to the guy who had provided the clubs, and ordered a set for me, and if I could write down my contact information, he would get them to me this week. It is simply amazing that there are people out there that are so giving like this. I really do have a new outlook, I now see how good people can be. In the face of adversity, people can and are so giving of spirit, it really is amazing. This is a guy, who I just met, who is a celebrity of sorts, and who was nice enough to talk to us, and encourage us, and help raise over $110,000 in one night for the house that I am currently living in, and then on top of that, he wanted to help me do something nice for my daughter, just because he could. He was really busy meeting and greeting all night, but took the time out of his schedule in order to make my daughter happy. I was simply blown away! At the end of the night, he also asked us to invite anyone who wanted to come down to the Global studios to watch the morning news, just to let him know what date we wanted to come, and he would arrange it. It was simply an amazing, and emotional day!

Today was a lot different from yesterday. We started the day at 9 am this morning in the clinic with Brenn. She had a lumbar puncture, and her Vincristine. Day 1 of round 2! It is always hard to watch Brenn when she is having a procedure done, we always stay in the room with her, because she is not really asleep, just in a state somewhere between asleep and consciousness. She is still able to speak, but doesn't remember anything when it is all over. I watched the doctor today while he was inserting the needle into her back, and through the entire procedure. They took out a couple ml. of spinal fluid, which is crystal clear just like water. It slowly drips out of the needle into a test tube, which they send to the lab to make sure that her spinal and brain fluid are still in the great shape that they have always been. They then put in some Chemotherapy drugs, pull the needle out, and put a band-aid on the small hole that is left. In total the procedure took about 5 minutes. It was interesting, but just knowing that it is my daughters back makes it hard. I am trying to learn as much as possible about how things are done, and why, so that I can understand as much as possible about how they are and how they are planning on treating Brenns cancer throughout this process. We definitely know a lot more than we did when we started.

Also in the clinic today, we talked with our head doctor. We learned that we would be in the standard leg of the test, which means that Brenn will be getting the current standard treatment. We are all very happy about this, as it means that Brenn will be getting fewer injections into her leg muscles. It was really hard last time we had to do it, and I am sure it will not get easier. Brenn did really well in the clinic today, she is always so brave, it really does amaze me. She knows what is going to happen, and knows now that it has to happen for her to get better, and stay better. She is apprehensive some times, but always goes through every procedure with no problems. She started all of her new drugs today as well. It is a pretty easy month on the number of pills as she will only have one drug every day, as well as only 4 scheduled appointments in the clinic. We learned last month however, that this is definitely not written in stone. Brenn had drugs added, and clinic days added last month it seemed on a weekly basis. We will see what this month brings, it is supposed to get better and better throughout the month. Heres hoping.

My Mom was waiting for us at RMH when we returned from the clinic around 12:30 this afternoon. We all had an enjoyable lunch and afternoon together. Christine did some shopping while Mom, Brenn, and I played (Samantha was with Uncle Allen swimming in the Coquitlam pool again today). Mom, Brenn, and I went to meet my brother at Ikea in Richmond this afternoon, but through a communication break down, they went to Coquitlam. Oh well, we had a great time. It was quite fun, Brenn finally felt free to sort of run around. I say sort of, because her run is more like a slow waddle, but it really looks like she is trying hard to run. She wore her mask, didn't really touch much, and kept well away from others, so, hopefully she will be able to get out more, and have some more fun. It was really great to see her in such high spirits, it truly is a blessing from God that she is such a great kid. I couldn't imagine what she is going through. I guess it takes a kid to show you that life is a precious gift sometimes. Thank God for Brenn.

Scott

Well today was girls day in the house....with Scott off golfing for the day their was no daddy to tie us down or make us go anywhere more like it....lol. The girls and I hung out, watched a short documentary on ALL with another family, played, coloured, ate lunch. Then we, well we hung out some more broke the new helicopter (until Scott gets home), played video games, ate dinner and well now the girls are in bed. Seriously that is all we did today.......what a glorious day me and my chicks. It's amazing how much love there is to go around when your not fighting about who ate what and when and who had more, who wants eggs, who wants to watch what, when the next persons turn is to fly the helicopter or to have the controller to the play station. Yes what a glorious day....normality.

With a giant smile on my face......good night

Well, today was another day at the hospital for blood tests, and doctor visits. We learned a little bit about what Brenn is up against during the next round, and will find out more on Wednesday. She will be randomized on Wednesday in order to find out what leg of the study she will fall into. She will be getting a lumbar puncture and Vincristine through IV, along with all the standard blood tests that go along with each clinic visit. During the next month though, she will only be getting three lumbar punctures, and no bone marrows. Dr. Bond said today that with any luck, Brenn will not need any more bone marrow tests or samples...what great news. Brenn is a early rapid responder to the Chemotherapy, and thus will not need and extra medicines. She will get all the normal medicine that goes along with standard treatment, but she should suffer fewer side effects because she won't need anything more crazy that the "standard" stuff. It was all pretty much good news today at the clinic. Brenn still has a lot of painful tests, really bad medicines that you can't even touch with your hands, or they will burn you, and lots of time to spend in the hospital getting blood tests, healing from any problems that may occur, and fevers, pucking, more hair loss (not that there is much more to lose), and way to many doctors and nurses to see. She is making it through with flying colors though, and was telling the new nurse what she needed and how to use her VAD today during the blood test, it was quite funny.

We really had an enjoyable day today, the sun was shining, and we were all in good moods once we got out of the hospital. We had been looking around for a remote control helicopter ever since one of the boys in the house got one, Brenn has really wanted one. We had looked pretty well everywhere except Toys-R-Us, where we finally found one. We brought it home and had lunch while it charged, then played around with it for a while. The kids love it (and I am not going to lie here, I like it a lot too)! I got invited to play in the charity golf tournament for Ronald McDonald house tomorrow. One of the companies that supports the house buys 1 group every year and gives it to the house to divide up as they wish. There are three Dads here and one of the kids going through his treatment are all going to play together tomorrow. It really sounds like it will be a great time. I am not a good golfer by any stretch of the imagination, but I am really looking forward to the day, it sounds really fun. I will be out there all day, we get all three meals, golf lessons in the morning, and a round of golf in the afternoon. They are giving us all rental clubs, as none of us have our clubs, they were not very high on the list for stuff to bring to Vancouver when I left, and will remain at home while we are here. I do expect that this will be the only round of golf I get for a while.

My brother also arrives tomorrow. He will be here only for a few days, but we are all really looking forward to the distraction. While living here, you really get into a pattern. We get up in the morning, and unless we have a clinic visit, we stay around the house, getting our job done, and making food for the kids. the kids will play for a while, have some lunch, and once lunch is done, we get bored, and head out to do anything that we can think of that is away from crowds, and interesting to the kids. Then we come home, make dinner, and bathe the girls, and put them to bed. Once they are in bed, we write the blog, and then make some tea, maybe play a game, then go to bed...repeat again the next day...it does get old fast. We are very thankful to have a safe, and sterile environment where we can all stay together though. It is a blessing from God that we are able to be together. This would be excruciating if we weren't together.

I am coming home next Monday with Samantha. We will only be home for the week, but we are looking forward to coming home, and seeing some of the people that have been truly helpful to us while we have been here. There are so many people that I would like to get together with, i just hope that we have the time to see you all. I have not booked my flights yet, but as soon as I do, I will post them on the blog so that you all know. I hope that I can see all of you...I am sure that it will be a busy week!

Scott

We took a nice relaxing day off yesterday. It was a beautiful day outside, and we took the opportunity to get some much needed R&R. I went to Mountain Equipment Co-op in the morning with one of my cousins in order to pick up a few essentials, came home and got ready for Brenns big surprise. We had been talking about her surprise for days and days, ever since we found out that one of my good friends got us a hotel room at the Pan Pacific Hotel in downtown Vancouver for the night. it was beautiful. Our room over-looked the harbor we were right above the cruise ship dock, and were able to watch a couple cruise ships leave in the evening, and a couple more arrive this morning. We had a great view also of Stanley Park, and the sea plane port. Brenn and I had a great time watching all the action in the port through the evening.

It was such a beautiful night that we decided to go for a walk around Canada Place around 8 pm. We thought that all would be okay if Brenn did not wear her hat...we learned a valuable lesson here. Brenns hair is now very thin, you can see her scalp clearly all over her head now, and with all the medications that she is on, she is sensitive to sunlight. I was able to shade her head with my shadow throughout our walk, but next time, she will most definitely be wearing a hat. We had also covered her entire body in SPF 60 sun block, so she was probably all right anyway, we are just really paranoid about everything. It was a very relaxing, and fun evening last night, and we are all in much brighter spirits today, other than Samantha, who had a really hard time going to sleep last night. I finally had to lay down with her around 10:30 so that she would settle down and go to sleep. She had a good nap in the car this afternoon though, and felt much better after that.

Brenn is still feeling pretty good, she still has some trouble with walking, and getting up and down from sitting, but she is much more willing to play. We have a clinic day tomorrow for another battery of blood tests, and another possible infusion of Albumen (a blood protein), then Tuesday is a day off, then Wednesday is another clinic day and a meeting with the oncology team to go over our next step. We will find out which side of the study we will be in as well on Wednesday. Thursday is is likely the start of her next round of treatment, depending on her counts mainly on Monday, but also on Wednesday. We will be seeing a lot of the hospital this week, but it will be made quite a lot easier when my brother arrives for a visit on Tuesday, and Brian and Beth Hillhouse arrive on Thursday. We are really looking forward to the visits. We haven't seen my brother since a week before Brenn came down to Vancouver, it will be really nice to see him, and his family.

It was a really nice weekend this weekend. We really didn't have many medications to give Brenn, just two in the morning, and one in the evening. It was a nice break, but it will be back to reality this week. It was a tough month on our family, and for the first time, last night, Christine and I were really able to sit down and talk to one another about how hard and frustrating, and maddening the whole situation has really been for us. We both knew that we felt frustrated, but it was good to get all our cards on the table, and talk about it so that we can help each other more. Thank you for your prayers, and please continue to pray through this week, that we will find the proper course of action, and that Brenns blood counts are all good so that we will not have to postpone her treatment.

Thank you all for your continued support, we feel blessed every day by all who know us.

Scott

We are finally done at the hospital again. We have a couple appointments early next week to go do more blood work, go over what we are doing over the next phase of treatment, and find out which leg of the study that we will be in, the control group, or the experimental group. Again this study only adds a couple more doses of one of the medications that Brenn has, and will be taking anyway. There will be no further side effects of her taking the extra medication, than she has, and will experience. Through this week at the hospital, we found that Brenn has some problems with her kidneys keeping up with the chemotherapy. Her kidneys are actually working to hard right now, and it is effecting some of the other chemicals in her body that was not expected. We now know that we will have to keep an eye on some of the other levels in her blood than normally would be. This problem is not unheard of, it is just less likely. There are so many things in her little body that we and the doctors have to keep tabs on it is becoming a little mind boggling.

It is really hard to believe that only a month ago we were scared because of what we didn't know. Now, Christine and I are able to enter into intelligent conversations pertaining to what we are doing with Brenns treatment, whether this drug might be better than that one and why. We really didn't think when we were getting out of the hospital the first time that we were any where near ready to deal with all of the things that we now do day-in-day-out. It is amazing how much knowledge you can actually retain in such a small amount of time. It is reassuring to know that we now can understand a lot more about what is going on, but it can get a little stressful when there are disagreements, or someone at the hospital not doing the things that we have come to expect and admire about the Childrens hospital. We are really very glad though that we are more involved in Brenns direction of care.

We are all very tired after spending this last week in the hospital again, but for our first real set back in this journey, it was not at all a bad one. We learned a lot from our most recent stay, and will be better equipped to deal with a wider range of possibilities. We are getting there.

Brenn is really happy to be back at the Ronald McDonald house. We bought a book all about how to build some really cool paper airplanes yesterday while we were touring the gift shop with some money that Bubba sent Brenn for a special gift in the lobby of the hospital. We built all of the planes, and started flying them outside (did you hear that...outside). Brenn started to really come around emotionally last evening. Finally the Dexamethasone started to come out of her system, and she started acting more and more like her old self. She was smiling and laughing and really having a good time throwing the paper planes all over the balcony. This is the first time in months that I can recall Brenn really smiling and laughing like this. It all started when one of the famous BC Childrens Hospital clowns came by just before dinner to do a little show for Brenn. She started to giggle and giggle. She couldn't stop for 10 minutes. It was the most wonderful sound that you could ever imagine. I am only sorry that Christine wasn't there to hear it as well. Brenn and I laughed and laughed for the rest of the night. We stayed up late just because we were having such a great time together, just her and I. We played some games, watched part of a movie, read some books and folded more airplanes. I can't remember a better night than last night! Thank God, it was beautiful. I was so happy, and emotional about all of current circumstances that I couldn't fall asleep until sometime after 4 am this morning, so on that note, I will leave you.

Thank you all very much for all your hard work with fundraising, and praying. I am still at the point where I couldn't imagine being apart from my family. I would not be able to stay much longer without the huge support from all the people in our life that are so very generous. Thank you.

Scott

Well today was reasonably okay....Brenn woke up smaller and better rested than the previous two nights, and she was in a better mood. The hospital stays are hard for her because she does not tolerate the constant interruption well, for any of you that know Brenn well any sleep less than 10.5 hours of uninterrupted sleep per night is a recipe for disaster. In saying this she is a trooper and she just keeps working through her days. Brenn's music teacher came to visit today and brought her some school work from Mrs. Bluemink including the life cycle of butterfly's (Brenn is quite excited to complete her activities and assignments), as well she brought some more cards and gifts from her class. We sent home with Mrs. B a small poem Brenn wrote for her class as well as a princess picture that she colored. Brenn often talks about getting back to school as she misses learning new things and her friends.

Scott spent most of the day with Brenn while I hung out with Sam at the mall and at the house. Samantha is exactly what the doctor ordered for me today, after spending 48 hours in the hospital chasing after and playing with Samantha was rejuvenating....the nap didn't wasn't such a bad idea either.....lol.

So like I said earlier Brenn woke up smaller, and the doctors thought that they found the cause of her sever water retention, the treatment they gave her last night seemed to have worked....the doctor also stated that the chemo has been hard on her liver as it has been flushing out the dead cancer and they wanted to keep her one more night to just monitor her. When I arrived at the hospital this evening to bring Scott and Brenn dinner I noticed that Brenn has again for the forth evening in a row grown in size this is very disheartening because we were thinking that after getting the albumin last night that she would not begin to retain fluid again as her protein levels would remain high, this is obviously not the case.......we will know nothing else tonight as to the doctors I assume will be running more tests to find the cause or try to treat it systematically until her body can heal itself.

I spoke with another mother in the house here and she said that the first couple of months are the hardiest because everything is new and you don't know alot about what is suppose to happen. She assured me that things will get to a level of normalcy and that we will be able to cope well and predict Brenns reactions to her treatment. This is a great comfort to me as the unpredictability of what is going to happen and what is an "acceptable" side effect and level of effect are the hardest part for me. All in all today was a better day. I am grateful to be forging new and genuine friendships in the house during this time as they are a great comfort not only to me but my entire family, we have all made valuable connections in the most difficult and trying time in our lives......I thank God everyday for giving me my husband, my beautiful, spirited, strong, amazing daughters, family, friends, the community of Prince George, and the other families that I share a living space with.......we are so lucky to be supported and surrounded by such thoughtful, giving and loving people.

Please keep the children of the Oncology units at BC Childern's in your thoughts and prayers tonight as their are many families that need it for different reasons, Brenn is truly one of the lucky ones.

Love you all from The Smiths

Another tough one today. Brenn has been increasingly cranky, and I don't think that she understands why. They say that the crankiness, and food cravings should be dissipating, but they haven't started to yet. Brenn is on a real roller-coaster ride right now. We had trouble with her VAD (Vascular Access Device) again today. We were not able to get any blood out of it again today. Samantha and I didn't get to the hospital until after they had again tried to access her, this was now the 4th try. I walked in just as they were cleaning up, and got a bit upset at them. They had not checked the chart to see if there had been a problem with it, so Brenn was poked once again. Once they realized that they were having some problems with it, they said that they would take her to get an x-ray of it to make sure that it was in the right place. Brenn was cranky, and Samantha and I were making her upset with our presence, so we came back to Ronald McDonald House for a few hours, and did come chores, made lunch, and found a really big bees nest...Yikes. Luckily neither one of us got stung. That would be the last thing that we want, another trip to the hospital...yuck.

After lunch we puttered around for a little longer before going back to the hospital around 2:30. Brenn had her x-ray, and it confirmed that the VAD was in fact in the correct spot, now all we needed to do to correct the problem was push some blood thinner into the tube, and wait for an hour. Once the hour was up, her VAD worked like it was brand new. I am not to sure why they wasted so many nurses hours messing around with that thing, but I guess it's protocol. We were able to finally get some blood out of her, which should give us some answers by tomorrow morning. We did get some of her blood results back, and her numbers are falling compared to yesterday, but this is not at all unexpected as her blood counts do fall after 7-10 days after her last dose of Vincristine, which was last Tuesday. We will find out tomorrow if the protein in her blood is changing or not, we got a quick result this afternoon that says it has risen by 1 point, but that is not enough by what we understand, we will see what tomorrow brings.

After we were able to get the blood tests out of her, we were able to start giving her some medicine that will help her body process more of the fluid that is making her so swollen. It is a bit of a band-aid, but at least it will help her feel better while we continue to try to find the reason that this is happening. She started her cancer journey at 17.1 KG (37.62 Lb.), she was up to 21.4 KG (47.08 Lb.), went back down to 18 KG (39.6 Lb.) this morning, and is back up to 21.2 KG (46.64 Lb.) tonight. Also, her stomach has grown by 6 cm over the last 12 hours. She is really uncomfortable. I really hope that she will feel better very soon. Tonight they are going to give her some medicine to help her sleep, and hopefully she will start to pee some of her fluid out overnight tonight. Maybe she will be feeling better in the morning.

It has been pretty scary the last few days seeing how quickly Brenns body has been changing, and it awes us that her body is able to stand it. Brenn also awes us in the fact that she hasn't gone off the deep end yet. Christine and I both feel as if we are constantly on the brink of complete loonieness, but Brenn seems to be handling everything in due course. She always has been and continues to inspire us to do better. We are very blessed to have such great children, and we need to always remember that even through these really tough times. I pray that we will always remember

Scott

What a crazy day! I guess it all really started last night when we noticed a rapid increase in swelling in a couple parts of her body. We put Brenn to bed, because she was really tired, and that is when we noticed that she was swelling up. I went down to phone the on-call oncologist, told him what was going on, and he asked me to take her in to the emergency room. He called ahead for us, and we were put into seclusion right away so that we were away from everyone else, and were taken in to a room within about 20 minutes. It was extremely busy in the emergency last night, and I was surprised that we were taken in so quickly. The nurse, and emergency doctor came in right away, and looked at her, did an ultrasound, and got a pee sample. All of these tests went well. We saw quite a lot of fluid in her tummy, and that started to become a bit of a concern. the oncologist came in to see us, and we took x-rays, and tried to start her VAD. We were able to push fluid into her VAD, but were unable to get any blood return. After a couple more nurses from the oncology department came down to help, we were able to get some blood return, but not enough for her blood tests. We hooked her up to IV saline in order to clear any possible blockages in her line, and about an hour later, after some more work to her line, we were finally able to get her blood work out! Thank God, that was a bit scary. Once we were able to get the blood, Brenn was allowed to eat for an extra hour, because she had been unable to eat for a few hours, and was not allowed to eat until after her bone marrow and Lumbar Puncture this morning.

We hadn't really heard anything by 8 am when we had to go to the clinic to have her procedure done, so off we went to the clinic. Before they sedated her, she made me go out of the procedure room and make her some soup. As she called it the "chicken noodle soup with the soft chicken pieces and the short fat noodles" or, Campbell's chicken noodle soup for the lay person. Right away after the procedure, we were taken upstairs back to the oncology ward, and Brenn tucked into a whole pile of food. She was just finishing up her first round of food, when some nurse from radiology poked her head in Brenns door and told us that she can not eat!!!!!! We were not pleased to say the least. We needless to say got a little upset with this nurse, and immediately told her that this was not an option, that Brenn had to eat for at least a little while as she was already really upset that she had not been able to eat all night. We got our way, and Brenn did really well. She really didn't complain about not eating all day. She asked a couple of times when she was gong to be able to eat, but all-in-all, she did really well. I was really proud of her.

During her ultrasound, she was really calm. Christine, the nurse from the oncology ward, and I all started talking about our favorite foods, and where the best restaurants in Vancouver are, and Brenn just kind of laid there and listened to what we were saying. She was really calm throughout the whole procedure. While we were waiting for the ultrasound, I slipped out, picked up Samantha, and brought a bunch of food back to the hospital for Brenn. Samantha had gone off with my Uncle Allan for a large portion of the day, so when we got back from the Ultrasound, Brenn was ready to EAT! Samantha and my Uncle got back to the hospital as I was preparing Brenns first dish, so Samantha joined Brenn in a little late afternoon meal. Once Christine and I got Brenn all settled into her food, I took Samantha back to the house in order to get some dinner, and prepare some stuff to bring back to the hospital for Christine and Brenn, as they are staying in the hospital again tonight.

Brenns blood levels were all really great today, except that her red blood cell count was the lowest that it has been that I know of, so, we gave her another transfusion, and she was good to go. The main problem that is keeping her in the hospital, is her bowel movements. She has really been eating a lot of food, and I guess that her body has not been keeping up getting rid of the poop. I won't go into great detail here, but this did come as somewhat of a surprise to us. Her bowel, from what I have understood today, is restricting her bodies ability to get all of her fluid into her bladder. Also, there is a protein in blood that aids the retention of fluid within the circulatory system that is really low in Brenn, so her blood is having leaking fluid into her body that is compounding the problem. She is just so swollen everywhere, she doesn't even look like herself right now. She has been uncomplaining though, and just says that she is feeling uncomfortable. I rather suspect that she thinks pain has to be really bad now to call it pain, the rest is just uncomfortable. She has been poked, and cut so many times in the last month, when I think about it all, it is quite upsetting.

Christine and I are both really tired and frustrated with some things right now. We just want all the answers and we are both really sick and tired of having to hurt Brenn, and make her uncomfortable, and give her medications all the time. We just feel so helpless, and we are not even sure what is going to happen over the next couple months with Brenns protocol. This week is supposed to be a break in her medications (which we really need), and then we will have a meeting with our team next Tuesday, where hopefully, we will be able to get all the answers that we want, and try to make the team understand a little better how we would like to be informed about what is happening, and what to look out for. We are starting to really understand quite a few things that the doctors talk about in doctor talk, and now we really understand what is going on, and now more than ever, we feel a little in the dark about a lot of things. Brenn is involved in a study, and there are a few extra things that go along with the study (none of which will hurt Brenn any further than we would already have to if she was not in the study). So just getting started on the study is most likely why we don't know what is going to happen from now on. We have lived the last month through shock of diagnosis to complacency to horror of what will happen, and finally to understanding, but being scared. Now we just want to know what to expect so that we can stop second guessing ourselves. Please pray first for Brenn that her body will be able to work out the things that it needs to so that she can get out of the hospital, and maybe enjoy part of her week without meds, and also for Christine and I that we get more answers tomorrow, and through the next couple days so that we can be more understanding, and at peace with our current situation...it has been a tough 24 hours!

Scott

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