Allison

January 18th Wednesday: Skipping and jumping in Heaven

2012-01-18T17:30:00.000-08:00

I would like to thank everyone for their support and prayersduring Charlotte’s journey. Weappreciate that we have amazing family and friends and live in a wonderfulcommunity.

Charlotte has started a new journey. Last night (Tuesday,January 17^th) just before the clock struck 10 she passed awaypeacefully in our arms. She was surrounded by people who love her and was beingtold about how proud we were and how much she was loved by all. She fought anincredible battle and we take comfort in knowing that she does not have tofight any longer. She is in heaven now, running and jumping like she has neverbeen able to here on earth.

A quote came to my mind as she was passing. Some wonderfulscripture? A wise mans words? No. It was from one of her favourite movies, Winniethe Pooh. At first I thought it was something that I wanted to tell her, butafter I realized that maybe it was something she wanted to tell all of us.

“If ever there is tomorrow when we're not together... thereis something you must always remember. You are braver than you believe,stronger than you seem, and smarter than you think. But the most importantthing is, even if we're apart... I'll always be with you.” ― A.A. Milne

Yolanda came and snuggled in bed with us this morning with afresh picture she had just drawn. It was Charlotte skipping and jumping inheaven.

Afuneral is being planned for Monday, January 23^rd for moreinformation please contact either First Baptist Church (250)426-4319 inCranbrook or Mcpherson’s Funeral Services at www.mcphersonfh.com

January 15th Sunday: Hard Times

2012-01-15T21:13:00.000-08:00

I'm not sure where to start tonight but I feel like had better put something up here to help piece things together. I'm sure there are lots of 'bits' of information floating around.

Things have continued to change for Charlotte since the last post. Day by day she seemed to lose a little ground. After the sleepy day (in the last post) she did perk up and have a couple of better days.

On Thursday we saw quite a sudden change, after a fairly normal albeit sleepy morning she woke up from her nap and was not able to focus. She was still quite with it and didn't seem alarmed that she could not see. She woke up and asked for a chocolate, I passed her one and held it up for her to take it. She kept staring straight ahead and asked for a chocolate. I said here it is and she held out her arm in totally the wrong spot and made a swiping motion. After a few little tests of waving hands and flapping in front of her eyes it was clear that she didn't see any of it, she did not even flinch. Within an hour she could see a bit again. This seemed to come and go for the rest of the day.

That bump of swelling on her head continues to swell, a new bump started to surface between her eye and ear. It looks uncomfortable but she never complains about it. We have been slowly increasing her morphine hoping to ease any pain she might be feeling.

Friday she was sleepy again but this seemed a little different. Even when she was awake and alert its seemed like she couldn't hold herself up. Her head wobbled quite a bit, like when your falling asleep in the car doing that head bobbing thing, like that. I cant remember but I don't think that we tried sitting her up on her own, she would have slumped off the chair. But she was awake and alert, asking for chocolate and by suppertime she ate a good bowl of noodles with cheese. As long as she was propped up on someones lap she seemed to be happy.

Saturday morning she didn't want up; she took her morning meds and was swallowing ok, she was responding a little to questions, nodding her head or squawking, but she just didn't open her eyes or want to be moved out of bed. Her breathing was laboured and throughout the day got worse, a big deep breath followed by way too long of a pause, followed by some short panting, it is a style of breathing that indicates that a body is slowing down. Her doctor was by a couple of times and once again had to tell us that this could be the beginning of the end. We are all used to Charlotte and her amazing turnarounds so I think everyone is hesitating to label anything. By noon she seemed to have lost any capacity to communicate, I'm sure that she could still hear us, her eyes seemed to scrunch tighter at appropriate moments. We got geared up in case she was not able to swallow, her morphine can be administered under her skin so we set that up for the night. We are a little nervous giving her oral meds in case they don't all go down and we will not know how much she actually got. The other worry is that they could get into her lungs.

Saturday night went smoothly, she continued to sleep in her new big girl bed, Rob and I tucked in on either side. Her breathing got a little better throughout the night. Her morphine went in fairly smoothly. So I guess it was a good night.

Sunday morning came and she was breathing a little easier and was slightly alert again. We got a few nods and squawks around 10, by the afternoon things had regressed again. So we have spent most of the day tucked up on her bed reading her favourite stories.

........... I am being beckoned to help get things set up for tonight.

January 3rd 2012: The roller coaster rides into 2012

2012-01-03T23:06:00.000-08:00

Things seem to be changing again for Charlotte. Nothing as big or fast as our big scare back in November, but a lots of little things that pile up. After some fairly good and constant days over the holidays she had trouble on Sunday (the 1st). Charlotte had some trouble breathing during the night, just an odd but distinct pattern- one big breath....a really long pause... then a couple of short pant breaths. She slept ok through it.

Usually Charlotte demands a very strict routine in the morning; upon waking she needs to get dressed within about three minutes, then downstairs for breakfast, during breakfast she needs her diaper changed (sometimes her pants again too) then we finish breakfast, then its shower time... yup we have to get un dressed, don't question.... after she's dried off and dressed then its time for a movie, and a Chai tea latte, then we go downstairs to play with her playmobil toys.

Anyways that's always the routine if she is feeling well.... but on the 1st she wasn't and she slept on the couch all day (in her jammies) she didn't want to eat, wouldn't even open her eyes much. Her breathing seemed to be back to normal. She still responded to all our pesky questions and seemed to be awake on and off all day. Dr. Pienaar dropped by said that he didn't like the look of it all. We started increasing her steroids a whole lot and morphine a little to see if that helped. She remained groggy most of the day. Then suddenly at 7:30pm she sat up and asked to get dressed. Then she wanted breakfast food, but wouldn't eat much of anything but chocolate. Then she wanted her movie....and to play downstairs until midnight when we finally shut the party down and told her that she had to go to bed. The next day she was in a foul mood but got up promptly at 8am and seemed to be feeling much better- up and playing and alert all day to least. It was such an odd turn around. We kept up the steroids for a couple of days and will see now if we can bring it back down.

Before Christmas we noticed a new little shake in her hand, an unsteadiness when she is holding something out in front of her. She has a little trouble holding cups steady to drink out of, and zeroing in on little objects to pick up with her fingers. Dr. Pienaar pointed it out and said that that sort of a shake is caused by pressure in her inner part of her brain. It is an indication that things might be changing inside, moving inwards as well as outwards. I haven't mentioned it for awhile but we have seen quite a few changes over the past two months on a bump on the back of her head (I mentioned it a few posts ago) it has grown considerably and sort of went from one little .5" bump to three little bumps, now they have sort of grown together... you can see in the picture above. It does not seem to hurt her at all, but it is a little awkward since she cannot lay with her head square on the pillow. We guess that it is at least partially made up of swelling since it seems to get smaller when she is on these high steroid doses.

Its way past my bedtime and I'm not really sure where I was going with this blog post anymore... must be a sign that its time for me to stop typing! Good night.

December 21st-25th: Christmas Holiday

2012-01-03T22:11:00.000-08:00

Merry Christmas and Happy New Year to all our friends. I hope that everyone enjoyed the holiday. here are just a couple of pictures from Christmas. We knew that we would not be able to plan ahead this year but we were glad how everything worked out. On Wednesday the 21st we decided that Charlotte, and the rest of us, were stable and feeling strong enough to do a trip up to Bragg Creek for two nights. Thank you to everyone who re-arranged their schedules to help make that work out for us! We were glad that we got to sneak in a visit with Dr. Lucie and a few of our nurses at the Children's Hospital, we have not been back there since May! We were also lucky enough to have a little visit with Robs grandparents from Telkwa who were visiting in Calgary. We spent two nights and the girls got thoroughly spoiled! We took it fairly easy and enjoyed having some extra hands (aunties and uncles) to help keep the girls entertained.

We headed back to Cranbrook on the 24th and were spoiled with great food and family again. Yolanda had fun learning to play battleship with Grandpa, she had some wonderful tactic- like one boat accidentally hanging over the edge of the grid! The girls were very spoiled with gifts from everyone. Charlotte has quite the collection of stuffed kitties now!

Boxing day came and we caught up on some rest, Charlotte slept most of the day and was much more bearable after that. You can see in the pictures here that the steroids are catching up to her a little, her cute little cheeks are puffing up a bit. With that also comes a short temper. For the most though she had a pretty good holiday. She learned that she can push the boundaries more and more and get away with things which is pretty frustrating for us. She knows that we will dance on our heads or rearrange the stars if she screams loud enough for long enough... something she is willing to do. Her taste seems to be changing again too, she has such odd preferences its hard to plan ahead. For quite awhile it has been Kraft Dinner and hotdogs, then over Christmas she discovered shrimp. Once I went out a bought a whole bunch of shrimp she has changed her mind... right now its just chocolates for breakfast, pickled asparagus and noodles with parmesan cheese for lunch and dinner and copious amounts of Chai tea to drink throughout the day.

December 9th Friday: Some good days again!

2011-12-09T23:53:00.001-08:00

December 9^th Friday
I realize that I have not put anything up on the blog forover a week, my Facebook gets little updates but I realize that does not helphere!

First let me say that the” I heart Mom” shirt mentioned inthe previous post was a success... so much so that her Daddy might be startingto get jealous. At least now we can rotate and wash her clothes!

Also pertaining to that last post, and way more importantthan the shirt thing, she pooped. Hooray! Thank you to everyone who respondedwith ideas of things to try, I received suggestions from 6 different people! I’mnot sure how much detail everyone really wants to know about this sort of thingbut let’s just say that after 14 days of no movements we were WAY past usingpsyllium husks. Let me assure you that Charlotte is on heavy dose of alactulose every day. We started using suppositories daily, and when those didn’twork we stepped it up to micro enemas, when those didn’t work we were forced topull out the big ones. I will spare youof the more colourful version of that saga and just say that once thingsfinally started moving everything seemed to get a little more under control. It was a very tense couple of days, poorlittle girl.

We feel that we have had a tremendous answer to our prayers.Two weeks ago Charlotte was lying on the couch, unable to move, not eating, andsleeping all day. Her doctors here had been in contact with the palliative careteam up in Calgary and they said that she likely only had a few days left. Imentioned last week that she was eating a little more and up a few times a day.Well I am extremely relieved to say that over this past week she has only gottenstronger! She is eating more and up and playing most of the day. She has theoccasional nap, maybe every other day- we try to encourage it but some days it’sa fight, she is feeling too good to sleep! We have been able to sneak hersteroids back down a little this week; it is still a bigger dose than it wasthree weeks ago. She is doing so well. She has really amazed us all. I’m notsure what the future has in store for us, we are still taking this journey oneday at a time. But we are praying that we will see improvements each day andshe will get stronger.

We have been so blessed that Charlotte and our family hassuch wonderful care. We live in a very generous community and feel very welltaken care of. Charlotte has two amazing paediatricians here that are workingwith her care team up in Calgary. Two weeks ago they had been stopping by ourhouse twice a day to check on her, and it’s not that we don’t like their visits,be we feel very relieved that the frequency of visits has diminished to twice aweek now. We also have two incredible nurses taking turns here during the week;it’s nice to be able to just snuggle up with Charlotte while someone else isbusy vacuuming or cleaning up in my kitchen! It’s especially nice to havesomeone else be the bad guy when its suppository or enema time! AlthoughCharlotte thinks that our pastor comes over just to make her pause her movie, wereally appreciate that he has been coming by daily to encourage and pray withus all. Many wonderful meals are being dropped off throughout the week, thiseases up the grocery shopping, meal planning and preparation time allowing usmore snuggle and play time. The girls are also receiving some wonderful littlepick-me-ups in the mail, cards, letters and especially stickers are somethingto look forwards to in the mornings.

I love reading your comments, emails and fb messages. I realizethat it’s awkward when you don’t know what to say, and that’s ok- most of thetime I don’t know what to say either. Oldacquaintances that I see at the store ask “how are you?” such a simple thing...but it starts my mind reeling... well, I think, that depends on what you know,do you know about the past year and a half? Have you heard the horrible part?If you have, I can honestly say that (taking everything into account) this week’sbeen pretty good, an improvement or something... But if you have not heard anyof that where do I start? Telling you ’I’m good’ is not very accurate! I sizeyou up and think how much do you really want to know?... I’m sure I don’t getit right as often as I would like. Some people want more when I answer thatthings are ‘pretty good this week’ they say “really” with raised eyebrows andlook like they are waiting for me to tell them the truth. But the answer that Igive is sometimes all I can give; otherwise they might have to deal with an emotionalChernobyl. So let me say that it’s REALLYok if all you write is that you are thinking of us or keeping us in yourprayers... it’s just really nice to hear that we have so much support.

We got our Christmas tree up and decorated andthe girls have already gotten fully spoiled! Thank you to Alexander’s Quest foran exciting array of craft supplies, books and toys and the fun playmobil toysthe girls are enjoying them immensely.

I had more to say tonight... but I just realized that it is 1am and so I will post this as is... maybe check back in a couple of days- I will try to get this edited and finished, or at least a picutre or two added!
Good night!

November 29th Tuesday: Just a few pictures

2011-11-29T22:49:00.001-08:00

Here are a few pictures from the last couple of days. Altogether they look a bit misleading, Charlotte spends a big part of each day sleeping...of course its when shes up and playing that out comes the camera.

Supper time Monday the 29th, yes, she was actually asleep. She ate quite a bit of KD and cream cheese first though so that was great. I would like to point out the shirt she is wearing... she has worn it all week, it has been a favourite since the day she got it, lately she insists on wearing it. When its time to get dressed in the morning she starts tugging on her jammies saying "Shirt, shirt." In case I'm not sure which shirt she means she will point at the picture on the wall of her wearing it from last winter. This morning I told her it was dirty and in the laundry and she had a little redhead/steroid fit and yelled "SHIRT SHIRT SHIRT" at the top of her lungs. Out of the laundry it came.

Here we are just today (Tuesday the 29th) doing some crafts, decorating little trinket boxes. She found a sparkly purple heart in the sticker pile and showed me, "Shirt!" Yes it looked exactly like it, so we decorated her box to look like her shirt.

Here she is again after supper, after sleeping most of the day today it was nice to see her up playing for a couple of hours. Making sure all her kitties got their milk, maybe she thought that way she had to drink less herself? Thanks to everyone for the gifts for the girls, they are loving the crafts, stickers and especially the kitties.

I heart DAD, I heart DAD, I heart DAD... its been like this for a year. There is no denying that she is a daddies girl. Today I had an idea. I picked up some iron on butterflies to make the girls matching shirts... when I noticed that Charlotte's shirt had a little heat at the bottom! Ha ha! I'm feeling so clever, now watch tomorrow morning shes going to have a fit. I'm going to have to try really hard to not take it personally. I know she hearts Mommy too!

Charlotte's doctors think that she has been fairly steady this past week. Words are chosen carefully to not give the impression that she has improved but her condition has not worsened. One of our biggest concerns is that she hasn't pooped in a long time, all the different drugs that shes on coupled with the fact that shes not eating and drinking well, and that she is not mobile... we are in trouble. Another concern is pain relief she is on an oral morphine and a big steroid dose that is keeping her comfortable, but it always seem to need juggling. The morphine is one of the reasons why she is so sleepy all day. We appreciate your continued prayers for healing for Charlotte.

November 27th Sunday: Tears...

2011-11-27T22:30:00.001-08:00

November was great right up until the middle of the night on Wednesday the 23rd.

Charlotte woke up at about 2am with a shrill yelp and started throwing up. She did this 5 times throughout the night until about 6am when things finally calmed down and she slept a little. That morning she had a hard time to fully wake up, she was so groggy and sleepy. A fury of calls and doctor visits and we changed her drugs around, hoping that would make her feel better. Codeine was switched over to morphine and that steroid that I mentioned last post, that she has been getting a .5ml dose twice a day was boosted to a 2ml dose three times a day.

Our doctors here have been in close contact with the palliative care team at the Childrens Hospital. We were been told that it looks like her body has finally had enough, they think that she is on her last few days, maybe a week. I cant begin to tell you what that was like to hear. Days of tears.

In the few days since then we have had some improvements, her drugs are keeping her comfortable. Each day she seems to eat a little more, sit up and be a little more interactive too. For the most part she seems to be very peaceful and comfortable. A constant roller coaster.

We continue to pray. Please pray for us all.

November 18th: Feeling good for a couple weeks

2011-11-27T20:54:00.001-08:00

After laying on the couch, not eating much for a few weeks Charlotte was pretty weak and tired. She did not look good, her doctor was very concerned. Then we put her on a steroid to try to help relieve the pressure in her head, she had one little dose at bedtime on Thursday night (I cant remember which Thursday... it all blends together now, I think the 4th of November) she had .5 of a ml... that's like 6 little drops. AND THEN at 4 AM she woke up and said MOM! TOAST! HONEY! Ok, we are not going to complain about the ridiculous hour, lets get some toast going! This was the first time she asked for breakfast in a long time. She ate two pieces of bead with honey. She was up playing all that day, eating and didn't take a nap once. This was amazing. These pictures were taken a weeks or so later, after she had started eating well. She was up and feeling good. She was eating cream cheese by the plateful, she went through an entire block every two days- I'm not kidding. We drove by A&W one day and she spotted it out the window... she started fussing and gesturing and asking to eat, finally we figured it out and doubled back to go through the drive through for a hamburger. Then at supper that night she saw the napkin left over from lunch, and asked for another burger- so her daddy went back out in the cold for another burger. With the eating and feeling generally better also came little steroid rages.Once I made her toast and put it in the toaster by accident (the toast that Charlotte asks for is actually just bread, not toasted at all) well she put the first bite into her mouth and scrunched up her nose, squinted her eyes at me, and took the bite out of her mouth to inspect. With a scream she threw it at me and flipped the rest of the plate off the table onto the floor. I got the message, don't tick her off!

Here she just finished up a plate of cream cheese... more please?

Here she is, must be finished- I'm not sure if she was wiping off her mouth or showing us how big her tummy was from all the cheese.

We had almost three great weeks, she was eating, feeling good, and enjoying herself again. Her doctor was so happy with these changes, I think it was more relief than he had even hoped for. We realize that the steroid was not really fixing anything, it was just masking the pressure in her head that was causing her the discomfort. A side effect was that it boosted her appetite. We had no idea how long it would continue to help her feel comfortable, we were still taking things one day at a time. But when that days are that good they fly by way too fast.

October 31st: Halloween

2011-11-27T20:27:00.001-08:00

Charlotte wanted to be a kitty this year, and Yolanda... a dragon. Surprise, no! What was a surprise was that there were no dragon costumes to be found anywhere. Of course she was hoping for a particular dragon (Toothless from how to train your dragon) so I went shopping around at the thrift stores and found this hoodie, navy blue with silver sparkles- perfect. Then I just had to make it look like a dragon. After spending way too much time at the sewing matching we had something suitable. Unfortunately we didn't get very good pictures of her in the full get up, wings, tail, and all.

I was feeling bad about how much time I put into Yolanda's costume and all we were doing was slapping a pair of ears on Charlotte... So I found some fuzzy sparkly fabric and made her a little skirt with a tail and fuzzy shoe covers to make her feet look like paws. Unfortunately by Halloween night she was not in any mood to dress up and did not enjoy her costume much.

Not wanting to go out in the cold too much we only trick or treated the 10 houses directly around ours- just so that Yolanda could feel like she got out a little in her costume.

October 28th Friday: Changes

2011-11-07T08:01:00.000-08:00

This was a hard post to write, and probably not one you wantto sneak a quick read of while you are sitting in the office. I have blastedthrough the previous blog postings just to get them all up in order. We had a beautiful summer; Charlotte’s healthheld up and time flew way to fast. But now things are starting to change forher and I feel like although some changes have been gradual they are startingto add up. We are seeing these things one day at a time, putting them all uphere all at once is quite overwhelming. I wanted to get an update posted toshare with you about how she is currently doing.
In July I posted that we were getting a couple of nurses into bond with and get to know Charlotte while she is feeling well. That wayshould a time come when we need more help and care there would be someonefamiliar to step in. We ended up having a wonderful nurse come into our lives.The girls love having Dee come and play with them; her official title is the “PlayNurse,” because as Yolanda puts it, “She only has to check on Charlotte alittle bit, then she just gets to play!” She is a blessing and not only playsbut provides a bit of respite care for us.

In July I also posted that Charlotte had several small seizures.Her seizure medicine was then increased and I’m happy to report that we havenot had any recurrences. We thank God for answered prayer; those were a verystressful few days. We wondered if we were making the right decision aboutremoving her central line, in hindsight I’m glad that we went through with theprocedure.

Near the end of September we started to notice that herright eye was having a slight lag time in focusing, it looked a littlecross-eyed when she was looking at something at a distance of 10ft. That washard to see, a sign that the tumour is still progressing. This has slowlyregressed over the month, now she is cross-eyed most of the time, and it even seemsto change eyes at times. We think this is caused by increased pressure in herbrain. I can’t imagine what she feels like.

We have had to gradually increase her codeine to keep herhappy. This is so frustrating and hard to gauge since she cannot articulate thepain in her head. Slowly, over a few days, she starts to get grumpy... maybe itwas just a bad couple of days... maybe its pain... so we blindly increasecodeine oh, now she’s feeling good again. Then we feel badly that it was notincreased faster. Please pray for guidance and wisdom as we try to manage herpain, there are so many factors to consider. With the codeine comesconstipation, so yet another medicine is added to her list to try andcounteract that. We desperately hope that she is not in any pain but we justhave no way of knowing. We have been discussing starting her on a steroid soon to see if thatwill give her some relief.

In the beginning of October we noticed a small bump on theback of her head, we thought it was possibly just from a bonk on the noggin,swelling that would go down. It has slowly grown. We are not sure what to thinkabout this; although cancer is always in our mind- tumours should not crossthrough the skull. It does not seem to hurt her; she does not really like toomuch pressure on it but is able to lie normally. I guess it is not reallyimportant, just gives us something else to wonder and worry about.

Charlotte’s energy over the summer was great, fairlyconsistent at least. She would get tired and have an occasional “down” dayafter a busy one. Into September andOctober we have had an increasing number of “down” days. On these days she is tootired to do much more than snuggle up on the couch and watch us buzz aroundher, she doesn’t really want to eat or be too involved with anything. We struggleto get food and fluids into her; every calorie that we get into her probablycauses us to burn four times more. Then despite our best efforts on those days,she is also quite nauseous and vomits very easily. As parents one of our dutiesis to ensure that our children get proper nutrition, it is hard to accept theidea that this might not be doing her a favour much longer. Her doctorexplained that these little ones can get depressed too, she is likely just sickof being sick. Our hearts continue to cry out for Charlotte, we pray for hercomplete healing. It is so hard on these days to see her be like that.

We do have good days. They seem to be getting farther apartbut she still has a couple each week. On these days she usually wakes up ingood time and asks for food. Then after a small breakfast she wants to play,she will sit up on the floor and we will play with some small stuffed animal orher dolls. She doesn’t really ask for much food again until the afternoon butshe will constantly pick at something if it is available (and of course it is.)Favourite foods right now are toast squares, strawberries, grapes, cubes ofcream cheese... all cut miniscule and served with toothpicks. Oh and honey,everything is better dipped in honey- especially her fingers. She will enjoy most low-key activities,colouring, stickers, reading, watching movies. She loves kitties, most of ourgames involve her being a kitty, and Yolanda is always a dragon... somehow theymake it work. On these days she has silly moments; she gets cheeky and wavesher little fist at us if we are causing trouble.

At the beginning of October Charlotte developed a littlecough, no other symptoms, just a cough. It stayed low key until Monday the 10^thwhen she started getting fevered and by the next day we knew we were in trouble.She started an antibiotic then but by Thursday things had worsened and an x-rayshowed that she had infection in the top of her left lung. Pneumonia. We werelucky to have caught it fairly early, and got started with a second antibiotic.Unfortunately this antibiotic made her extremely nauseous and she vomitedfrequently (like nearly every time we gave her a dose which was four times aday.) So for two weeks we experimented with dose size trying to get in as muchas we could without making her sick. This made her not hungry at all. Weresorted to setting the timer at 20 min intervals and alternating giving her aminuscule dose of antibiotic or a syringe of blended fruit and veggies...allday long. It was fairly exhausting. But we made it through! We are extremelygrateful for our friend Bev who has been organizing dinners to be dropped offeach week for us, especially during all of that! The dinners have beenwonderful; it is great to not have to worry about getting something healthy onthe table on top of taking care of Charlotte. Thank you to everyone who has been helping out with that, it is a bigburden off our shoulders.

Two weeks of being sick and not eating has taken a toll onCharlotte. Her leg and foot muscles have tensed up and she can no longer bearany weight on her feet. I’m not sure how to explain, the tenseness is from herbrain telling her foot that it is tense, not the actual muscles. On her gooddays she is still up and about and can “walk” a little on her knees or crawl,but for the most part she is dependent on us for moving her around now. Thishas taken a little adjusting for all of us since she is not happy to be leftbehind in a room for even a moment.

We take things one day at a time and try not to think toofar ahead right now. We appreciate beingin your thoughts and prayers and all the kind words sent our way. Pleasecontinue praying; for guidance, peace, comfort, protection and above all undeniablehealing for Charlotte.

September 6th Tuesday: Yolandas first day of school

2011-11-01T23:28:00.000-07:00

First day of school pictures....I cant believe how fast time had gone, Yolanda has grown up so much this year. Here she is ready for Kindergarten!

We were out enjoying the super warm September as much as we could... I know that the blog has been quite bare of "health details" I guess since she has been doing so well its easiest to put in the back of our minds and just enjoy each day. Charlotte had a great summer. Her health over the summer was very stable. We saw a slight decrease in the usage of her right hand, but its hard to measure since it was not being used very much anyways. Her weight gain was slow and steady, eating still seemed to be a bit of a struggle- one area that always causes grief! We saw Charlotte's energy levels decreasing a little at the end of the summer, if we had a really busy day (like her birthday party) she was typically wiped out the next day. That was still very manageable and we were able to take that in stride. Our family was very blessed with the amount of support we had, allowing us to stay home and savour every moment. We took it fairly easy, enjoyed many days just sitting in the back yard, playing in the kiddie pool and eating Popsicles. We took our one big trip to Kelowna and Vernon and other than that just let people come to visit us here.

I enjoy the following trio of pictures... blleeeech, yucky chalk!

They make me laugh... and here she is, regained her cool and looking oh so cute!

September: Fun in the first week of September

2011-11-01T22:55:00.000-07:00

Details will (hopfully) follow for our fun with friends this during this week... Im trying to get caught up to the present time but need to fill in all the previous posts first so that things stay in order!

Please bare with me... pun intended.

August 3rd to 9th: Kelowna and Vernon road trip

2011-11-01T21:38:00.000-07:00

We decided at 10:30 Tuesday night that it was a good time totake a road trip in the pink car... Charlotte was doing quite well, everything was stable and we were all healthy.

We had family camping (and having a lot of fun) in Kelownaand a generous friend who let us stay with her so we didn’t ACTUALLY have tocamp (but we could still get in on all the fun!) So with a flashlight I snuckinto the girl’s rooms to pack their clothes. We were on the road the nextmorning before 7:00. We had one unfortunate little stop to clean up a puking redhead but she felt better and wemade good time the rest of the trip up to Kelowna.

We were happy that everyone seemed pleased with our last minute decision to invade their family holiday! The girls enjoyed the beach, it was a beautiful little spot where the cabins were, we spent most of our time lazing on the grass under the trees or playing in the sand under the sunshade.

The girls enjoyed a few games of bocce, you had to watch your toes when it was Charlotte's turn to toss though... I know that yellow ball looks like she has a pretty good arm, but I think it was actually from uncle Greg who was standing behind her.

We were spoiled with all the wonderful fruit. Eating cherries in swimming suits is always a good idea! The girls had no problem helping themselves to everyones fruit, thank you to all our Aunties for feeding my daughters during the trip! We were thrilled to meet a cousin Yolanda's age to play with for the week, the girls got along great.

Auntie Dar painted Charlotte's fingers and toes pink to match the car... and then Auntie Diana let Charlotte paint her nails... here is the finished manicures. Charlotte was so happy with herself, she kept showing everyone her nails.

Here we are in Vernon, where we found some more cousins to play with. We had a great time staying with Ken and Kara. And wouldn't ya know it there was a CAR show that weekend! (Sorry to anyone who wanted to see car pictures, my camera was focused on other things.)

THEN!!!... Not only did we decide in the middle of the night to take this trip, invite ourselves to stay with my cousins... then we also invited more guests for a party! It was fun and I was so glad that Jenn and Orlund and their two girls could make it all the way from Kamloops for a BBQ with us! Here is the best picture out of the twenty that I took... Try to get five little girls with ice cream to look at the camera, HA! We were missing Carter in this picture, he probably didn't have time for this silliness.
Below we have: Charlotte, Paige, Yolanda, Olivia, and Joy.... that's a whole lot of cute toes in the grass!

We headed home on Tuesday the 9th. On the way home the car started doing something... not sure what but we thought that maybe it was a sign that we should stop and let it (and the girls) cool down... OH YA! Did I mention that the pink car does not have air conditioning? Cranbrook...to Kelowna...and Vernon in August? Anyways we were coming into Fairmont soon and lucky for us Auntie Cheryl just happened to be heading in the same direction and so she met us for a swim.

Unfortunately this is one of the only pictures that I got during the whole trip with the girls by the car, you would think that on a car trip like this I would have thought of posing somewhere cool for a family/car picture, nope. We just had so much fun with all the people we were visiting that I didn't think of it. And so here they are trying to diagnose what might be acting up.

Home again by 6pm... It was a long hot ride but very fun. Wonderful to see so many lovely people. Wonderful to get some sand under our toes. Most wonderful to get to spend some time relaxing together.

July 16th Saturday: Birthday party number two

2011-10-14T23:39:00.000-07:00

Saturday brought just enough sun that we were able to get out the pools as planned. The girls had fun, and once again Charlotte was spoiled! She was feeling better for this party and I think she enjoyed herself quite a bit. (For Thursdays party she was quite tired and was happy to cuddle on her daddies lap most of the day.) It was quite the princess party, I think we had 12 bathing beauties running around the yard and three baby siblings playing at the sidelines.

Three kiddie pools and the slide was the main entertainment.

These three girls, Chloe, Charlotte and Macky... East Kootenay girls who met each other during stays at Ronald McDonald House in Calgary. I could definitely tell that out of the crowd these three had something in common. They were all very sure of, and asserted their princess status. I think that having cancer and being at the centre of everyones attention for so long... makes them, Im not sure how to say it, egocentric maybe? Its not that they are any more demanding than the average kid, its just that when they have a need they are quite assuming that it will be taken care of swiftly.... and if its not you get a dumb look that says, "what do you mean, no?" Three sweet little girls who have all been through way too much.

Charlotte is checking out her new little cousin Lena(or maybe just her toys!) We were glad to have my cousins family here who were visiting from Germany.

Check out this cake! Chloes mom, Lecara, made Charlotte a fancy birthday cake last year while we were all at RMH, and when she asked if she could bring one this year I was excited! Well its not so much of a cake as a work of art, the kids loved it! (and the adults did too)

I dont think we even got all the girls in on this picture! It was a very fun day, we sure appreciated everyone who helped out!

July 21st, Thursday: Charlottes Birthday

2011-10-14T22:14:00.000-07:00

Charlotte's 3rd birthday today...

This was a great day. Although it was a little cool and windy we were able to enjoy a picnic in our backyard.

We had a lot to celebrate that day. Going back to her last MRI, when we were told that her cancer had returned, we were also told that there was no real way of knowing how long she will have or how long she will be in good health. There are so many factors to consider and we just don't know very much about this type of tumour, she was in good health (otherwise) but we have been told it is very aggressive. We knew of one other little warrior who fought this same type of tumour and sadly from the time his family was given that same speech he only had a precious two months before he was called home. Two months took us right up to the weekend of Charlotte's birthday. Well here we are at her birthday and she was doing so well, all her doctors were very pleased with her health.

Needless to say I wanted to host a big party both to spoil this girl and to have everyone together to celebrate. The guest list was so long that we split it into two parties, a big people party and a little people party, with a day in between so I could regroup. So these pictures are all from party number one, with all her grandparents, aunties and uncles.

Both girls were very spoiled! Charlotte's favourite gift was the little honey packages (the kind from restaurants) that a couple of her aunties tucked into their presents.

Charlotte had her cake picked out months ago, she had a little kids cake book that she seriously carried everywhere for a few weeks. She and Yolanda picked out cakes for everyone in our family and anytime someone new walked through the door they would be shown which cake Charlotte, Yolanda, Mommy and Daddy were getting for their birthdays. So I was told that i was making a purple purse cake, although its not the prettiest cake ever it suited her just fine.

Now we have a three year old! After a fun day, full of sugar and gifts and excitement, we put our little girl to bed... thanking God for her health and asking for his continued blessing on her life.

Battle of the Blades; Fundraiser for RMH

2011-09-27T23:20:00.000-07:00

Please spread the word about this unique fundraiser for Ronald McDonald house, and if you get a chance please vote lots!

Battle of the Blades is a live event competition featuring former NHL hockey players and internationally ranked figure skaters who compete each week in an elimination-style ice skating competition. The winning pair earns the Crystal Trophy and a sizable charity donation.

David Pelletier is competing for Ronald McDonald House® Southern Alberta during this season of CBC’s Battle of the Blades! Vote for David and his partner Tessa, and help the House win $50,000!

Tune into Battle of the Blades at 8 p.m. (local time) every Sunday and vote for David! Voting is open from 7 p.m. – 2 a.m. ET.

Voting information:
Online: www.cbc.ca/battle (one vote per person every five minutes during the voting window)
Phone: Dial 877-844-8154 (unlimited)

Here is a picture of one of the cutest bald girls that I know... oh ya, and some figure skater guy ;)
!!!Hi Brynn, we love you!!!

Every ones support is appreciated, lets help David and Tessa win this "battle"... so they can help kids and their families during their own battles!

July 15th Saturday: A Courageous Journey

2011-09-27T22:46:00.000-07:00

A week before Charlotte's 3rd birthday our community came together for a fundraiser. Our friend, Gord McArthur (an avid rock climber) came up with a very "courageous" idea to raise funds for both Ronald McDonald House and for Charlotte care. The Courageous Journey was by far the most grueling thing that he had ever undertaken, climbing the same wall for 24 hours. Our favourite coffee shop, Hot Shots, was the location of the climb- they stayed open the entire night and donated part of their proceeds to this Journey.

Following is few little excerpts copied from Gords blog. (click here to see his blog)

"... Last year, encouraged by a family battling along side their ill daughter, I felt the urge to help…but how? I wasn’t enthused about baking and selling pies, nor was I psyched to host a car wash. So, I decided to get a couple of buddies and do the 24hr climb…the three of us on a 35ft man made climbing wall. At the end of the 24hr marathon we had raised a good chunk of money and felt accomplished with what we had set out to do. The three of us had split up the 24hrs and in the end were able to help a worthy foundation; the Ronald McDonald House, Southern Alberta. Case closed.

2 months ago I was asked if I would ever do the 24hr fundraiser again. Without hesitation I shut down such a thought with authority. Any such idea was out of the question-PERIOD. That was until I heard about our friends, the Amsings and what Charlotte, the youngest daughter, was going through.... I knew I had to help..."

"... I began the logistical process of organizing the “Courageous Journey” fundraiser. Weeks of preparation, acquiring supplies for the climbing wall, designing the advertising plan, canvassing for donations and gift items for the silent auction. Compared to last year, the task of putting this together was far and above what I had expected. Thank goodness for all the kind people that “chipped” in with time, energy, and donation."

Here is Gord on one of his last climbs for the Journey.

Although she was a little tired that day Charlotte made it out to give Gord a flower to say thanks. Pink of course, her favourite colour... actually the only colour in her vocabulary.

Hugs from his little girl, what a good way to end such a long day/night/day.

In his blog Gord said, "There was never a time that I was solely on my own. Whether my gracious belayers, the two amazing people that massaged and took care of my body all night long, supporters in lawn chairs, wrapped in blankets, cheering me on, random visits from friends in the middle of the night, the staff and late night coffee drinkers in the Café next to the wall (the café opted to stay open for the full 24hrs, in support of the fundraiser), and even some local scrapbookers that decided to scrapbook in the café for the greater part of the night. I can’t even begin to describe how grateful I was for such support from so many wonderful people."

One of the girls working at Hots Shots organized a crane folding event for Charlotte.

"The Japanese tradition of senbazuru promises that a person who folds 1000 cranes will be granted a wish, such as long life or recovery from illness. Many times a family or group of people come together to accomplish this labor of love."

We were told that many people from our community came by to help fold cranes for Charlotte. While I have heard the story about folding cranes before I don't think I have ever actually seen that many together, they were so beautiful and exquisite. Charlotte really enjoyed taking a good look, turning them all over, running her hand through the strings of cranes. They are proudly hanging in her bedroom now, a reminder of the love and support from our friends in this community.

Thank you to everyone who made this Courageous Journey possible. We greatly appreciate how much love and support we have received in this community. I know that Ronald McDonald house appreciates that support as well.

July 16th The Pink Car, part two... the pretty part!

2011-08-29T22:38:00.000-07:00

Don't be shocked but its true... A brand new post!!! I know it has been over a month since you have last heard anything from me. It has been a good month, very busy but very fun. Charlotte is doing well, she continues to surprise her doctors. A couple months ago she did lose a bit of ground with her mobility, especially her right hand and arm. But since then things have been quite stable. She is happy just being a grubby little kid who is finally able to play in the pool and yard. We continue to pray "Lord we trust that you can do immeasurably more than we ask or imagine and so we commit Charlotte to you. Your love knows no bounds, your power knows no limits. When we cannot understand what is happening, we ask you to forgive our unbelief and set us back facing you, trusting you. Your faithfulness is new every morning. In our weakness Lord show your strength." We continue to hope for a miracle in Charlotte's body.
This post is long overdue and I'm going back to do some catch up here...

Announcing the arrival of the PINK CAR! We were so lucky to have Micheline Ryckman do some photos for us, I think this girls camera has some magic in it! It was kind of a yucky day, raining by the end of the shoot actually. Mosquitoes, slap slap slap. Whiny kids, check. But look at these pictures...

Rob also put together a little blurb about the car...
For the last year and a half that we have been in the hospital with Charlotte. I have watched a lot of car shows with her. Every time a pink car came across the TV Charlotte would perk up and say mine, mine and point to it. Though I had no previous experience… I decided that once we got out of the hospital I was going to make a PINK car for my girls! I started looking and found a 1970 Dodge Charger in Edmonton. The car was picked up on April 11,2011 but would sit around a little more then a month because Charlotte still had many procedures going on. The work on the “Pink Car” started on May 24, 2011 – every nut and bolt was taken out of the car and cleaned, polished or painted. Parts where ordered and the labour started every night after 8pm when the girls went to bed. A couple of weeks into the project the doctors gave us the “go home and make her happy speech” and I honestly didn’t think the car would get done in time. Charlotte needed her parents more and more but fortunately because of a very supportive wife and an amazing man named, Mike Guido we got the job done. Mike stepped up to the challenge of helping out with the rest of the paint and body so that I could concentrate on the engine and interior. Everything started to come together and the car was finished with help of some amazing people only 50 days after it was started! (This might be close to a record!) The “Pink Car” was ready in time for the ‘Mopar in the Mountians’ car show and Charlotte took her first ride in it the day before.

Yolanda and Charlotte both really enjoy telling people that its their car any chance they get and they are always happy to go for a ride.

The Charger is painted in an actual 1970 paint colour called Panther Pink. The colour was only offered in 1970 for a few short months. Over 800 plus man hours where put into the car and many wonderful people came together and helped out in anyway they could – we also had amazing sponsors who helped with financing this project as well. Big thanks to Lordco – locally Shaun Byers and at the main office Sarah Durant. Legendar Auto Interiors and Manchini Racing where great. People locally… Leo Laberge from gold creek upholstery, Ken Haberman, John Fercho, Jamie Hatt, Geoff Lyons, Kris Assen, Michelle Bannick, Rhonda and Alex Friesen where all huge helps! And of course, the girls and their Mommy!
~Rob Amsing

Back to Allison writing now... here is a close up of MY part of the process... finding matching nail polish! I had a little paint swatch that I took into the drugstore. Up and down the nail polishes I went testing out the few closest looking ones and found a suitable one. Doesn't everyone match their toes to their cars?

Saving my favourite picture for last...

You can check out Ryckmans Photography Blog to see a few more photos from this day.

THE PINK CAR Still a work in progress

2011-07-22T20:55:00.000-07:00

Haha, the first post I did on the car I titled "A work in progress" well its officially running, registered and on the road, it has been in its first show and shine... and it even won an award at the event... the award for "The best work in progress!" So without further ado... here she is....

I am going to leave some blanks and let Rob fill you in on some of the details... I would likely get it all mixed up.

July 2011 first couple of weeks

2011-07-18T23:25:00.000-07:00

July 2011 Playing catch up... I feel like I am so far behind I’m not sure where to start. Sorry if this reads choppy!

Before our wish trip we started getting some in home nursing care set up. Charlotte is not really considered an oncology patient anymore (since we are finished with all her active chemo and radiation treatments) so the Children’s hospital is transferring her care back to Cranbrook. It makes for much less travel for us, which is a nice change. So we have two nurses coming to see us at home, we have just set up short little visits for now so that the girls can have a chance to get comfortable with them. Then in the future if we require more help for Charlottes care we can bring in these new friends rather than a stranger suddenly appearing.

After we got home from our trip we decided to re-think Charlottes central line removal. She had so much fun in the spray parks but we felt so nervous every time she got wet, we didn’t want any complications with her line. After seeing how much she loved the water we decided to make life easier this summer and have it removed. We made the call to Calgary the day that we got home and surgery was booked for July 5. Dreams of backyard kiddie pools and sprinklers were dancing in our heads.

A couple of days before surgery Charlotte woke up in a strange state at 9:30 she was fussing, and seemed really confused, and drooling. We thought of several things it could have been, the most obvious being a small seizure. The next afternoon we saw it again, someone was carrying her and she just “spaced out” for about 10 seconds, had a full body shudder and suddenly seemed really confused- looking around wondering what and where. Then there was a sudden drooling thing again. After some more phone discussions with the ACH we decided to keep on with the Calgary trip plan and spend some time with the Doctor before we did anything. So she had another little seizure like that in the truck on the way up to Calgary. They were so short that we would have missed them entirely if she didn’t get so confused and drooly afterwards.

We had a good chat with one of her Doctors... Good; I’m not sure if that’s the best word. But we came out feeling calmer about the seizures and surer about the line removal. The whole picture still looked bleak. The seizures are caused by the pressure of the tumours, so unfortunately they are an indication that things are still growing. She was on a low dose of anti-seizure drug so her increased that and that has controlled them ever since. We were told that we could up that drug once more and then there is another drug that they could add in conjunction... this gave us a small idea that there will be things they can do over time. Time; that is such an important word but empty of meaning for us, like the doctors tell us time could mean weeks or months- they cannot tell. He thought she looked very strong, he was quite pleased with her health, but concerned about the seizures.

Surgery went well; it was a very short procedure. I think for the older kids they might not even knock them right out... but with the little ones it’s a full anaesthetic job. Since they were taking her line out they needed an IV to put the anaesthetic through, there was a line into her hand that had the same little cap that we use to cap her central line. When she was waking up Daddy was whispering in her ear that the doctors took out her “noodles.” She was still a little groggy but understood, she rubbed her little hand up over her chest with a smile... and then noticed that THERE WAS A NOODLE COMMING OUT OF THE BACK OF HER HAND!!! The look on her face very clearly said “WHAT THE HELL!?!” It was a look that faded from just noticing, to understanding, to shock and horror, to feeling tricked, to feeling betrayed, to anger, to panic... my poor sweetie pie, she thought we had just moved her noodles, plus now they were hindering her dominant hand. There was no doubt what flashed through her head, we both jumped in and started reassuring her that they would take that out soon too. Once her panic had calmed down, we all had a good laugh with the nurse who saw (and understood) the whole thing too.

That was a very bittersweet day... can’t describe how hard that procedure was. That was the operation that should have signalled the end of treatment, no more line = no more chemo. We had booked two previous line removals, each cancelled because her tumour had come back. And now here we were taking out her line, and not for the reason that I had longed a year and a half for. We ran into quite a few unaware doctors, nurses and anaesthesiologists who stopped to chat. “How ya doing, what ya doing, line removal! Great, so she’s done treatment then?....uh....” at which point they realized by our faces that they stepped on a landmine. I felt bad for them, I just had not figured out how to dance around that mine yet. It truly was nice to see everyone, especially all our oncology friends who where there, but each visit was pretty hard.

Now here we are back at home... the kiddie pool is filled every sunny day. It is so much fun to watch her play happily in the yard. I am so thankful that our basement was finished with the playroom in time for summer, a nice cool place to play when the sun is too hot. We have been blessed with some wonderful visitors to play with, lots of cousins and friends coming to see us. Rob has been super busy working on the girls pink car, but more on that later!

The girls had so much fun with their new cousin Abbey, we tried to get a nice picture
of the three of them things were going well until....

Abby started to tip over and Charlotte tried to prop her back up a bit!

Fun with Aunties and Uncles!

A wonderful visit from our friend Brynn and her family.

Love these girls so much! They are so strong!

We didn't even need water in the pool for a day of fun with these cousins from Powell River!

Great Grandpa and Grandma got in on the fun too!

Three beautiful princesses! We got to enjoy an iced tea party with Chloe, a friend we made
during our Ronald McDonald House days.

June 14th to 21st: Charlottes Make-A-Wish Trip

2011-07-09T23:37:00.000-07:00

Here is where we stayed, the amazing Give Kids the World village...

Here was our villa, there are 70 duplexes in the village... so 140 families at a time. It sounded like they are usually pretty full year round. Families get to stay for a week, and they have to be referred through a wish granting organization. That means 140 kids / week all year; there are that many sick kids whose wish is to go see Disney World and all the parks. Each wish kid gets a special star that they put on the ceiling in the castle... there are over 10,000. This whole place is just mind boggling. They have 1500 volunteer shifts per week! I had so many pictures from the village that I broke it down into 3 other posts... the Park of Dreams, the Enchanted Carousel and the Ice Cream Palace were all in the village too. Once a family arrives at the village everything is taken care of, all meals are free, all events are free, free ice cream all day long. Our villa had a kitchen and laundry, two bed and two bathrooms; oh ya, and a couple of cute little frogs that snuck in one night- not part of the regular GKTW package I'm sure!

We knew this place was going to be fun but, wow were we surprised! Giant cookies and chocolate dipped strawberries. Below is a picture of the cookie truck, he just rides around delivering fresh cookies and cold lemonade to everyone.

Here we are back at our villa with our cookies and lemonade... so fun.

In the model train room, it took up an entire room. There were whole rows of buttons to press that activated different things- like the Ferris wheel, or a flag waving, or a fisherman, it was a kind of treasure hunt to find everything.

Just chatting on her cell phone while getting a pedicure from... Grandpa? With a crayon? Hmmm.

Riding the little train around.

This was where we ate supper and breakfast, the Gingerbread House.

Cute, I thought... oh wait they were both blowing bubbles and then drinking, ew. Oh see the table? Real peppermint candies shellacked into them. There we so many fun touches on everything.

Here she is writing on her star for the ceiling.

Putting the star in the box, the star fairy collects the stars from the box and puts them up. Here is what her finished star looked like, if you are ever at the Castle if Miracles keep and eye out for this little star.

One morning the girls wore their crowns to breakfast, true princesses!

Here we are at the My Little Pony Spa, getting our nails done. The girls got little hearts painted on their cheeks too. I thought it was cool that the toy company Hasbro made a special edition Pony just for here, Twinkle Hope.

Aaaahhhh, this is the life! Such a little princess.

This is the Castle of Miracles, where the ceiling is covered with the kids stars.

A great time was had by all!

Thank you to Make A Wish and Give Kids the World. We had an amazing family vacation, some great memories that will always be treasured.

June 15th to 20th: The Ice Cream Palace

2011-07-07T22:32:00.000-07:00

We had so much fun on Charlottes Make a Wish trip. One of the highlights at GKTW was the Ice Cream Palace. As much ice cream as you can eat, with all the toppings, as often as you want... open all day long. Is that right out of every kids day dreams or what! Plus is served up in a fantastic palace that looks like a glorious pile of ice cream treats.

Here is a couple of stock pictures that GKTW sent us on a disk... They had photographers at all the fun events to take pictures, then they sort them by villa number and burn everyone a copy when they check out. Plus we got pictures of all the different buildings with no random people walking in front. Im sure that I never saw the palace empty like the picture below!

MMMMmmm! Half ice cream half whipped cream, load on the sprinkles. Great!

HHHMmmm. Whats that you have there Daddy? Milkshake hey? Well, don't mind if I do!

MMmmm, yep that ones pretty good too!

Pink ice cream in a bowl.

Green ice cream in a cone.

Three cheers for ice cream!

Charlotte caught swiping her dads milkshake, AGAIN!

June 15th to 20th: The Enchanted Carousel

2011-07-07T21:17:00.000-07:00

Here we are on the Enchanted Carousel at Give Kids the World Village. We really didn't even have to leave the village to go to Disney World... Everything we needed was right here! We must have gone on the carousel two or three times a day, usually right after supper but before we stopped for ice cream. Tough life hey? There will be more pictures of GKTW coming... I'm just having a hard time narrowing down my favourites to show off here.

This was one of the only pictures we got of our whole family... with either me or my mom behind the camera we didn't get many shots of our whole group. We were so lucky that Grandma and Grandpa came with us, it sure made our trip easier and more enjoyable!

Sometimes we had to ride right after breakfast too... actually any time it was open and we walked by one girl or the other usually asked. Yolandas favourite to ride was the green Sea Horse, Charlotte tried a couple by herself but decided that she liked to ride with Grandpa on the snail the best.

June 19th Tampa Aquarium

2011-07-03T22:19:00.000-07:00

June 18th Sea World

2011-07-03T21:43:00.000-07:00

The Park of Dreams in GKTW... Our biggest smiles

2011-07-01T00:42:00.000-07:00

Yolanda was taking too long to get out of the water, Charlotte let her know!

June 16th Thursday: Disney World

2011-06-26T22:58:00.000-07:00

I have so many pictures from our trip to Florida that I will break them into themed blog posts. There will be much more to come, and hopefully some more journaling too- but for now I hope that some pictures will tell our story well enough!

The Magic Kingdom was fun. We got to see Rapunzel who was the one princess that was on the top of each of the girl’s hit list. (She is from the latest Disney princess movie, Tangled.) Unfortunately she was the last princess we saw and Charlotte had just fallen asleep during the ‘It’s a small world’ ride and did not want to wake up. (Charlotte does not wake up nicely... remember, we call her the dragon for a reason.) We also got to see some of the other princesses, these were the only people in costume that the girls were not too afraid of. I guess the mascot type costumes were too scary. It was a very nice perk to have a button for Charlotte that showed she was on her Wish trip, we just had to flash it and they brought us to the front of every line up... in front of people who had been waiting hours to see the attractions. Her button granted us free parking and a double stroller rental, and it let us into a special quiet lounge, just for the Make a Wish families. We were very taken care of.

Sleeping Beauty, she was one of the best princesses for her acting in character.

Belle from Beauty and the Beast

Cinderella

Two happy suckers, I mean girls.

Belle also visited us at GKTW where we stayed, she played her part so well. This was Robs favourite princess.

Watching the parade.

Unfortunately the day so hot (like 38-40 degrees) so we were poking in and out of aircon areas a lot, I didn’t realize it at first but that was wreaking havoc with my camera lens fogging up... so I was a little disappointed with my pictures.

Prince Eric and Ariel, the Little Mermaid

Cinderellas fountain

Here we were in the Make A Wish lounge in Disney world, what a welcomed relief! A whole quiet, peaceful, air conditioned room in the middle of the Magic Kingdom craziness. The girls were so hot and tired after lunch, this gave us a wonderful little spot to recharge... and jump around?

They had so much fun jumping on the pillows, and dancing on the rug- its a charachter from Aladdin.

Trying to show the line up at 'Its a small world' we got to skip right through with Charlotte's button!

The line continued around and behind that whole white building

Yolanda and Grandpa

On the 'small world' boat, it was not just Charlotte who fell asleep during this ride!

Charlotte waving at the singing dolls.

Rapunzel and a sleeping beauty in one picture!

Thank you to Make-A-Wish, Give Kids the World and Disney for making this day happen.

THE PINK CAR A work in progress

2011-06-26T21:36:00.000-07:00

For those of you who have not heard.... Charlotte and Yolanda are getting a PINK car. Not just any pink car either! Their daddy has been working some long hours to make this car come to life. We have met some wonderful hardworking people on this crazy endeavour who have been an immense help. Seriously, who wants to clean car parts Friday night! (Thank you to everyone who has dropped by to help out!) It all started with Robs old Coronet car project, he was tossing around ideas for how he plans on painting it one day... and the girls kept telling him it should be PINK, pink pink. So with that in the back of his mind and waaay too many hours spent on his phone while he has tied up with nothing to do during our hospital stays this past year, he found a (to him) reasonable sounding old car restoration project, that could be pink. A ‘70s Dodge Charger. (That’s the same car that the Duke Brothers drive in the old TV show.) So here are a few pictures of what they have been up to so far. We are hoping to have it running to do a couple of little road trips this summer... so if you are bored hanging out in Cranbrook with nothing better to do Friday (or any) night, you know who call!

Charlotte seems quite happy with how the car is already.

Who needs an engine when you have a dad to push your car around?

Panther Pink

Enough pink to make a Barbie nauseous!

June 11th Saturday: Make a Wish ... and Squeaky Shoes

2011-06-11T23:13:00.000-07:00

Wow, time has flown. We have been having fun, not really DOING a whole lot... but keeping busy. Our big news/distraction has been getting Charlotte's Wish started. We asked Make A Wish if they would send us on a fun Sea World adventure. Well, we are gearing up for a week long treat at Give Kids the World in Orlando. We get to spend time at Sea World and meet some princesses at Disney World.

Our Make a Wish Package arrived!

Wow, were we spoiled or what!

Gnome Hats from Disney's Gnomeo movie

We got hats, backpacks and tee shirts.

I didn't get all of it in the picture but they also each got a special "Make a Wish" barbie and a stuffed animal!

We haven't even left on our wish trip and we were spoiled... Thanks Make a Wish!

Aaaannndd..... here's a cute little show we filmed today. I picked up Charlotte a new pair of shoes at Bumble Tree for our trip... With Squeakers in them! She had a pair like this a year ago but I took the squeakers out before I gave them to her. After watching this video you will understand why... but now its too late, she is hooked, she loves them so much that she would not let us take them off tonight. So, yes, she is sleeping in her crib... with her shoes on.

I think maybe tomorrow I will have to take ONE of the squeakers out, then maybe the other the next day and tell her they got broken. Could you imagine having to listen to this while touring Sea World?

Haha, too fun.

I have a new friend down in the states who's daughter is fighting a similar tumour to Charlotte, she is a beautiful writer and I feel like some days I just want to copy and paste her whole blog here... she writes things that I feel like they came from my own heart about my daughter. Please keep little Kate in your prayers beside Charlotte. Here is something I have copied and re-worded from her blog.

.................

Thank you to those who continue to pray for our family. Those who have tangibly sought to help our family during this life shaking year. Oh how I hope you will have a front row seat to seeing God miracle in Charlotte's little body..... please keep praying for it.

.................

We feel so grateful for all the support for our family and friends. So many kind gestures and offers, thank you Cranbrook for everything you have done. I just don't know how to express a gratitude of this magnitude.

May 24th Tuesday: MRI Results

2011-05-24T22:18:00.000-07:00

Charlotte had her MRI this morning.
The details of the procedure were not so good.
Unfortunately she woke up screaming mad, the combination of drugs that they used for anaesthetic did not leave her in a happy state. Plus they used tape over her eyes, (we learned during radiation that she is quite sensitive to the medical tape on her skin) but we have never seen them use tape for MRIs so we didn’t know to request NOT to use it. So her eyes were all puffed with red squares- the solid hour of screaming didn’t help either I’m sure.

The real news of Charlottes MRI was not good either.
The area in question, the "thickening" that we saw four weeks ago has grown. It is low in the back area of her surgical cavity. Our oncologist says it is clearly cancerous. There is a second area showing now too, with a nickel sized tumour growing near the top of the surgical cavity.

What now, we are wondering? Both areas of reoccurrence are within the original field of radiation. They have given her the highest dose of radiation possible to that area already; that means that radiation did not help. She has had the highest doses of chemo, the protocol best matched for her cancer. Chemo has left her system fragile and there is not much more they want to give her as it would have too high of risks. We have tried naturopathic medicine on the side (despite wincing from our conventional doctors when we mentioned it.) I don’t think that we have the time that is required for anything from the naturopathic field. We are continuously praying for a miracle that is all that seems left for us to do.

Our doctor is going to look into any trials and studies that we might be eligible for; it does not look like there were any really promising ones for Charlotte’s case. She is in contact with St Jude’s in Memphis and Sick Kids Hospital in Toronto to see if there is anything available. The main trial that she suggested we look at is only to test the toxicity level for children of a new chemo. This chemo has not been proven to do anything for PNET tumours in kids but has shown to slow tumour growth in the lab. – But there could always be an unexpected result. It looks like we will be given a choice of quality vs. quantity of life. We have to decide if we want to chance making her sick and tired to try it out. Even if it does affect the tumour, our doctor warned it would not be enough to cure her.

Charlotte’s oncologist told us that she does not have anything else to try that she would realistically expect to cure Charlotte. She asked about what we have at home for palliative care options. When we asked what she expected for our time together, if we did not do any more treatments, she had no answer, not a hint. It sounded like one day Charlotte will just start showing symptoms again, or start having seizures. Weeks? Months? We dont know.

I would like to tell you that although all this is going on Charlotte continues to feel well. She is happy and outwardly healthy. She was so happy to see Yolanda when we got home, the two of them scurried off to show each other the new pictures and stickers that they had done as soon as we got in the door. They were singing away upstairs until we had to break up the party for bedtime. We have not yet told Yolanda what we were told in Calgary. She is a smart girl and she sees everything that is going on but we are not going to tell her everything just yet.

Here we are once again turned upside down. Please hold us up in your prayers as we are not sure how to hold ourselves up anymore.

May 22nd Sunday: Upcomming MRI

2011-05-22T20:55:00.000-07:00

I just wanted to let everyone know that Charlottes MRI will be Tuesday 24th at 8am. We are counting on seeing ...NOTHING. At least no change in anything. Our doctors are hoping to get a better idea on what is (or is NOT) going on in one area of her head. We would appreciate you goining in prayer with us THAT CHARLOTTE IS CLEAR FROM CANCER.

Psalm 91:9-16(NIV)

⁹ If you say, “The LORD is my refuge,”
and you make the Most High your dwelling,
¹⁰ no harm will overtake you,
no disaster will come near your tent.
¹¹ For he will command his angels concerning you
to guard you in all your ways;
¹² they will lift you up in their hands,
so that you will not strike your foot against a stone.
¹³ You will tread on the lion and the cobra;
you will trample the great lion and the serpent.
¹⁴ “Because heloves me,” says the LORD, “I will rescue him;
I will protect him, for he acknowledges my name.
¹⁵ He will call on me, and I will answer him;
I will be with him in trouble,
I will deliver him and honor him.
¹⁶ With long life I will satisfy him
and show him my salvation.”

May 20th Friday: Family Photos at Fort Steele

2011-05-20T22:58:00.000-07:00

We were very spoiled this week by some of friends who treated us to a photo shoot with Ryckman Photography. We had a fun afternoon out at Ft Steele and Ryckmans captured some wonderful pictures. For a few more pictures check out their blog http://ryckmanphoto.com/blog/?p=4568

This girl melts my heart, what a beautiful little lady. I keep wondering, when did she grow up so much? Here we are getting her registered for Kindergarten already! Maybe it’s because we missed so much of her this past year, maybe that just the way kids grow up anyways- too fast. We are so proud of what a wonderful big sister for Charlotte she has become. She is so patient and forgiving; and she always keeps an eye on her- ready to give me a full report if I should miss something. Haha, I'm a little surprised that we were able to get a picture with her mouth closed; she has become such a little chatterbox!

And look at this girl! The life and spunk in this girl is growing every day. Being at home so long has done wonders. She has finally gained some weight... for the first time she weighs more that she did a year ago when she was first diagnosed. With every gain in energy she also gains some cheekiness though, we get glimpses of what having a redhead two year old might have been all about. She is getting around much better too, trying her best to keep up with Yolanda. If Yolanda gets too far ahead or out of sight she gets a shrill reminder of "YA-LA" and she will wait up. About a month ago she started to try going up and down the stairs again- a little scary for us, but she was quite confident in no time at all. That was a nice step in her independence since she didn’t have to sit at the bottom (or top) and holler "mam....Mam.....MAM!...." until mommy finally got the hint. Her language is slowly growing as well, at least to us it is- I’m not sure how much someone else would understand. She is still not quite putting words together, but her vocabulary is growing. Next step we have been told to work on two word combinations... that should be interesting as our other daughter tends to speak in one run-on sentence from the time she gets out of bed until night.

See that cheekiness? Those "redhead" traits, stubborn determination... They have served her well this year. I love the picture above, she seems to have an air about her. "Don't mess with me, I don't have to prove anything. I know how tough I am." Her scar is fading a bit, and some of her hair is coming back. There is still quite a big bald spot where the concentrated radiation was, we were told that it may never come back there. I guess we will have to keep an assortment of fashionable hats around!

... ...Speaking of hats (off on a tangent for a moment here) do we have any talented crocheters out there who would like to tackle making a hat for Charlotte? I found a couple of cute ones with little brims and flowers...

And now back on track here with our picutres.... with still more sas!

I would like to let you know that YOU have a chance to have your own family photo sitting with Ryckmans this year. In a wonderful gesture to help support us in our journey the Ryckmans have offered to auction off a sitting package worth $375. The auction will take place on May 25^th & 26^th. For more details please check out their blog http://ryckmanphoto.com/blog/?p=4568 Here is some details off their blog: "The bidding will start at 9am on May 25^th and end at 5pm on May 26^th. The auction will take place on our Facebook site – please click this link here – FACEBOOK. We will post a picture of Charlotte on our Facebook page wall and you may bid directly under it in the comment box."

The previous two are Yolanda's favourites, she likes the one where she is a flower.

April 26th Tuesday: MRI Day

2011-04-26T21:05:00.000-07:00

Just a quick note to let everyone know that Charlotte had her MRI today.
We got up early and were on the road by 5:40, so it has been a fairly long day!

The MRI itself went well, Charlotte took the anaesthesia well and woke up happily. The results left us feeling a little unsettled. There was no sure sign of cancer at least. There was a "thickening" of the edge of the cavity all the way around which seemed to be expected, or at least explained. There was one little area at the back- bottom of the cavity that was thicker looking than the rest of it. This thickening is a layer around the perimeter that acts like a barrier or scar tissue between the brain and the cavity left from surgery. Charlotte's oncologist checked with her surgeon before speaking with us to see if he had any clues, he has not come back with anything. She also put in a call to the radiation oncologist to see if he had any ideas about why this could be. She is wondering if it could have been affected differently because of where the field of radiation was in her head. Hopefully we will know a bit more tomorrow.

Since today was inconclusive and we know that this tumour is very aggressive our oncologist asked to push our next MRI up a couple weeks, the original plan was for every six weeks. I guess we will be back within a month to take another look.

Thank you all for your prayers, Allison

April 8th Friday: Nice to be home!

2011-04-08T23:41:00.000-07:00

We came home to find some signs of spring. Its so nice to be back. We have picked up where we left of with the basement renos, its starting to really look good. Hopefully we will never have to worry about flooding again!

Charlotte is looking so good (in my opinion at least) the weight she gained while in the hospital seemd to kind of kick-start her system. She has a little more energy and is eating much better. Now if we could only improve on the sleeping!

Thank you all for your prayers and support, we really appreciate hearing from you!

April 1st Friday: Yolandas Birthday

2011-04-07T21:37:00.000-07:00

It was Yolandas birthday... not much of a party but she had some fun in the midst of it all.

This is how we set Charlotte up each night. She refused to use the nose oxygen prongs so we made a little tent and hooked up the tubes to blow by her face all night... this was far from peaceful for any of us! The oxygen also has humidity bottle hooked up... so every once and a while the tube drips from condensation, right onto her pillow or face. Then if she rolled facing away from the oxygen she would not get enough into her system and the monitor would BEEEEEP. This was every night, then whoever was spending the night had to get up, adjust the hoses (or the sleeping girl) try to get the oxygen levels back up.

Here is the birthday girl, she got to open a couple of gifts and daddy took her out to get "THE" new movie (Disney's Tangled.) She has been talking about Rapunzel even since we went to see it in the theater.

Charlotte watching the unwrapping, not much energy yet.

Some very enthused "Tangled" viewers... the camera just didn't capture the excitement very well. Rob especially was on the edge of his seat!

At least Charlotte started eating a little more. Everything had to be cut tiny and dipped in honey for the princess for a few days. You can see my finger splint, I cut the tendon over my knuckle and now it needs to be splinted for 6 weeks... then they will see about surgery. (I had a cheese grater accident back in December- so lame!)

This was the first day Charlotte was actually up, she sure had fun having Yolanda to play with.

She was not stable enough to stand or walk yet, she had been laying down for a week. We had her up once but it was greatly protested. Yolanda and I tried to do a puppet show outside the door to get her to stand with Rob to watch, but she was pretty shaky.

Although I don't particularly like it, I feel like this last picture really represents my life right now. Sitting. Waiting. Not much going on... The picture looks a little washed out, appropriate for how I currently feel. Charlotte's hooked up to her hospital pump, hooked up for how long we dont know- we will never know. There is some food tucked in there too. We are relentless at getting her take a bite of anything- there are snacks tucked in the bottom of my purse, diaper bag, truck console, upstairs, downstairs. There are some stickers... this girl loves stickers, especially puppies and kitties... at the end of each night I pick them off of everything, clothes, furniture, toys, my washing machine is lined with the ones I have missed. Its fitting that this picutres cropped tight too, there is nothing going on outside of this scene that we are able to focus on right now.

March 23rd Wednesday:Squeezing in a party

2011-03-30T20:22:00.000-07:00

Yolanda has been planning on having a Fancy Nancy birthday party for a couple of months now, she will be five on April 1. (EEEK, when did that happen?) Everything was becoming birthday focused, each day as she got dressed she would point out what she planned to wear for her party. For those who don't know Fancy Nancy she is a little girl who will stop at nothing to make everything look fancy.

I had started to collect a few things planning for a fancy birthday party awhile ago but since we were renovating at the same time everything was stored in a bin out in the garage and we couldn't find it.

Yolanda's cousin Trinity surprised us with a visit so I thought it was a good time to have a little party. That night as I was falling asleep I made a mental list of some things that I needed to pick up for the party. Rob was also going full blast on the renos and had a friend and my dad lined up to help... so I had little bigger lunch planned for them. That days renos consisted of hauling old wood chips out of the attic to get ready to put new insulation in... an extremely gross and dusty job. (It also made my house extremely gross and dusty since the bags had to be hauled downstairs through the house.)

Then at about 2am Charlotte started the whole not breathing thing... for the rest of those details read Fridays post. Anyways Rob took to her to the hospital emergency with the instructions for me to call his helpers in the morning to put the work on hold. I got back to sleep sometime after 3am, after the nurse called to give me an update on Charlotte.

That morning I was up early to give the hospital a call, and to call off Robs help. I had thought about telling Yolanda that we would have her party another day... but she woke up singing about how beautiful her party was going to be. She was spinning in circles singing "Its going to be my beautiful party, its going to be so fancy." UH OH! How could I cancel it now! All year so much has been about Charlotte, now she gets one little moment and I cancel it because of Charlotte, not fair at all! So I sucked it up and went ahead with it. Luckily my Mom stopped by and I delegated a trip to the dollar store for a couple of decorations. I was able to zip out to the grocery store once Rob and Charlotte got home because she needed milk for her cereal. I ran around the store picking up stuff for lunch and the party. Not having a cake planned I thought we would do Fancy Nancy style parfaits... three colours of ice cream, whipped cream, sprinkles, cherries and bananas. Kept it simple since there was just the three girls.

I was so glad Cheryl stopped by early to help out to... took the glamorous job of doing the lunch dishes off my plate. (I know, so punny.) The party was pretty short and sweet, perfect since we were exhausted, but it seemed to satisfy the need for an official party.

Yolanda was thrilled with her gifts, even the Rapunzel gift bag was a big hit.

Here is what was going on in the living room shortly after the party.

The renos were finished in time, at least the part that REALLY needed to be done. Thanks to everyone who helped out. The day we left for Calgary the guys were coming in to insulate... we left Robs sister in charge and have not been back since! Thanks to everyone who has been cleaning up our mess and taking care of us, we really appreciate it!

March 30th Wednesday: Feeling a little better

2011-03-30T15:09:00.000-07:00

Charlotte's looking a little better today... especially after a pink Popsicle to add colour to her lips! She is on TPN now, nutrients through her IV line, giving her an extra 800 calories per day. She was only eating about 500 calories a day this week so this is giving her a huge burst in energy. The downfall is that the TPN runs over 24hours... and Charlotte didn't slow down until midnight last night. She was up and playing and being silly, way too much energy for the middle of the night! Then she slept until 3am... and then fussed until I finally got her up at 5:30. Once we were sitting up in the chair with the TV we both were able to catch a few zzzs. Then the problem was that her oxygen tube never stayed in place so the alarm kept ringing saying that she wasn't getting enough oxygen. But she seems to still be having quite a good day, despite the lack in sleep.

She still needs the full oxygen blowing by to keep her levels up. So until that is gone we will not have a going home date. Plus we are waiting to hear from infectious disease about when they think she can leave. We have been told to expect around a two week stay in hospital. So we are almost halfway there!

Old Video: May 20, 2010.

2011-03-26T16:44:00.000-07:00

Playing around on Robs phone we recently came across this video. The first time we watched it we were in tears, it seems so long ago. We have all covered so much since then. She has been through so much. The second, third and fourth times we watched it it made us laugh. Almost a year ago... here is my sweet little Charlotte last May during a chemo treatment.

There is sound, sort of, mostly whoopee cushion noises.

The "high five-fist bump-finger wiggle" is some sort of gangster secret handshake that her aunties taught her. The cushion was a present from the nurses from the "poke box" where the kids get prizes for when they have needle pokes.

March 26th Saturday: Pneumonia is the answer to yesterdays question

2011-03-26T16:33:00.001-07:00

I’m sorry that I was not able to get any info sent out yesterday; we were so busy with doctors and tests that it was all we could do to keep up with it all for ourselves never mind share info. We really appreciate everyone’s prayers for Charlotte. Late last night our doctor came in with a huge smile on his face we had results back from some of her tests. He said it was a miracle that, considering Charlotte’s condition and the oddness of some of her symptoms (and lack of symptoms,) that she only has pneumonia and it’s a very easily treatable strain. There were so many frightening ideas being passed around yesterday during all her testing, one being a blood clot in her lung- which is hard to detect and could have been life threatening. We were all very relieved that it came to the conclusion of pneumonia. This does not mean we are out of all danger; she is very sick and tired. She is on some very aggressive antibiotics. She is sleeping restlessly on Daddies shoulder right now, Oxygen hose blowing full blast in her face.

Let me fill you in on a bit of the whirl wind of Friday. We talked to 9, NINE! different doctors yesterday, most of them more than once, most of them brought their entourage... I couldn’t even guess how many people we talked to in total. Each of them wanted to hear the story, when did we first notice her sick... how did things progress... each one of them brought their own set of questions to the story. Was she on a farm, do we have pets, did we play in the mud, were we around a crowd, did we go to the fair, has she had anything unpasteurized (milk, honey) has anyone in our entire neighbourhood been sick, what kind of house renos were we doing, was there any sign of mould, did she have rash, was she eating normal, what about all these questions for the last month, what about all these questions for the rest of our family, how was her birth, when was her last chemo, how did radiation go, has she been complaining of pain, did she have any falls, or seizures, has she had a runny nose, how have her diapers been, did she visit any new places, what about other planets or the twenty sixth moon of Jupiter, does she have family history of asthma or anything? The list went on and on... We did that nine times. We talked with doctors from Respirology, Infectious Disease, Respiratory Tech, two doctors from Pulmonary, Intensive Care doctors, a couple doctors from our Oncology team. And then sometimes they would come back for further questioning, or send their minions (as Rob teases.)

Charlotte caused quite the stir in the hospital yesterday, I feel like we caused a flurry in nearly every department. But I am amazed at how well orchestrated everything was. I think that we lucked out with the Oncologist who was covering, not that we have had problems with any of them, but this one seems particularly methodical and organized and overly precautious... traits that worked in our favour. His style of presenting information kept us fairly calm during such a long wait with no answers.

I said yesterday that Cranbrooks x-ray suggested pneumonia but the doctors here didn’t think it was that clear. The x-ray actually looked good. The odd thing about all this was that Charlottes chest sounded as clear and healthy as ever, pneumonia would make it sound gunky and crackley under the stethoscope. She also was not presenting any other symptoms that would go along with pneumonia, no clues in her style of breathing- which muscles she was using. So I guess pneumonia was not the obvious answer. She was started on new antibiotics that covered a broad spectrum of things, they thought the one she had been on in Cranbrook was too specific.

We started all sorts of tests. Blood tests to check her cell counts, capillary blood tests- where they poke her toe to check her bloods oxygen usage, cultures taken for checking for viruses, another chest x-ray, a nose test- I can’t remember what it’s called- the nurse stuck something WAAAAY up her nose to collect a specimen, swab tests- they swabbed her armpit, groin and another WAAAAY up the nose one. One last big test, we waited on the red list for the OR to open up as she had to be under full anaesthetic for this one: the Bronchial Alveolar Lavage. The which what who? Basically it’s a spaghetti sized scope with a light and camera that goes into her lungs to take a look around, they flush a small amount of salt solution into the lung then suction it out. Cells that have floated back out with the solution are analyzed. There was much much consultation about this test, it has some major complications that could go with it. We were told to EXPECT her to need to go to ICU afterwards, maybe for a few days to recover! She may even stay intubated and on a respirator for some time after the procedure, this means that she would stay under anaesthesia with a breathing tube in with a machine breathing for her. This definitely left us a little rattled! But in answer to prayer and in true Charlotte style she woke up breathing on her own, with no complications. We went back to our regular room to our nurse who looked very relieved to see us back.

By the time we were back from the OR results from all the little tests were coming back. The x-ray showed that she DID have a really bad pneumonia, 60 to 80% of her left lung is inflamed and over 25% of her right lung. The cap test showed that she did have good oxygen in her system- surprisingly good in fact. The Bronc test came back quickly; they saw that although there is a large area affected by this it is not badly infected- not much swelling and fluids, yet at least. I think that indicates that they caught it quickly before it got too far out of control. Once the pneumonia was diagnosed they switched her over to 3 different antibiotics to cover specific strains.

Around 9:00 our night doctor came in with a smile the news that it is this treatable strain called Pneumocystis pneumonia. Once we had the name of the source we changed her drugs again, now she is on a single drug in fairly high doses. For those keeping count this is the 6th antibiotic/drug that has been tried as they narrowed down the list. There is still the chance that there could be a secondary infection or even a second type of pneumonia affecting her but at least we have one confirmed and can start treating it.

And that puts us back where I started this blog post. Sorry it’s so long, there was just so much going on yesterday!

Last night went fairly well, with the exception of a super high spike in fever, a quick drop in her heart rate and an explosive diaper that made us need to change the sheets and wash the floor! Poor things has not pooped in a few days so we tried a suppository... unfortunately it didn’t kick in until 4am... and I was the poor sucker to discover that it had worked! But we got everything taken care of and managed to sneak in an hour or two of sleep.
Today has been much calmer, just one doctor visit to check on her. Charlotte has been able to sleep a little today too. She still needs full oxygen on which is a bit annoying because she refuses to have nasal prongs so we have to keep a hose blowing within 4 inches of her nose all the time. But she has eaten a little and had a few moments of playing in good spirits.

March 24th Thursday: Emergency trip up to Calgary

2011-03-25T00:18:00.000-07:00

Unfortunatly we are back in calgary.

Monday she started having a hhard time catching her breath after a cry, as long as she was calm there was no trace on anything out of the ordinaryy.
Tuesday it was a little more pronounced, carrying on a little longer. Her breath was really shallow and rapid and if it went on too long she started coughing... and if she coughed too long then she started gagging. Her forehead felt a little warm, but our thermometer read that she did not have a fever.

Wednesday morning at 2 am she was trying to sleep and even being calm could not catch her breath, she was quite warm to the touch as well. So Rob took her into emergency in Cranbrook around 3. They took her temperature with their thermometer and it read that she had a really high fever! (We are now on the hunt for a better themomerter.) So they gave her some tylenol to bring down the fever, started an antibiotic to cover her in case its caused by an infection of some sort, and some fluids to help hydrate her a bit. They were sent home by 9am. The rest of the day went fairly well for her, a few more episodes after she cried but nothing more than that. (The rest of the day was a little insane for us, we were trying to fit in a years worth of events- including renovations and a small birthday party for my soon to be 5 year old Yolanda.)

Thursday morning around 5 am it started again, not catching her breath at all. She was breathing so fast we could not even keep up to count her breaths per minute. I took her into emerg, her oxygen was fairly low so we started her on oxyygen. She got her next dose of antibiotics. They were not sure why her breathiing was doing such funny things so we did a chest xray to see if there was any hint of pneumonia... and they thought possibly there could be, maybe. At about that point we were told that we should plan on heading up to the Childrens hospital in Calgary.

It sounded like we could take our time and they would admit her tonight. Thhen she had one of her screaming fits which dropped her oxygen levels and made everyone panic. Next plan was that we were going up in an ambulance. Then the doctor came by again after talking to the doctors in Calgary, ... who decided we should change the plan again. Now we were to fly up to Calgary with STARS. Now Rob and I are not sure how much we should be stressing about any of this, because once she calms down again she goes back to normal. (We are still not sure how serious this is.) Our poor nurse who was arranging our transport... Organize for ambulance, cancel ambulance, call for air transport... OH WAIT! no one is flying in or out of calgary today because of the freezing rain... ok, cancel air transpot, call for ambulance. Whats that? All the ambulances in the area are busy you say? Request and ambulance from Fernie then, they will be an hour and a half, ok sounds good. She started arranging for our transport around 8am we didnt leave until 3pm. How urgent were we- we are still not sure!

Fianlly we are getting somewhere!

Riding in the jump seat, with her fraggle puppet to keep her company.

Snacking on cinnamon buns from the hospital

Cranbrook docs thought she might have the start of pneumonia or something.. but here they are not so sure, they are running a whole battery of tests tonight and hopefully something will come up. Our night doctor had a couple of widely varying hypothesis.

We will try and keep everyone up dated the best we can, our info is contradicting and confused at best... plus I am trying to type with a splint on my index finger... sorry if all my letters and words are jumbled... or my thoughts, they are feeling jumbled at this moment as well.

Love Allison

March 9th Wednesday: We made it home!

2011-03-09T22:56:00.000-08:00

Yolanda came for the last day of radiation, her she is with one of our nurses.

Just a little note to say that we are home and finished up radiation.

Charlotte is doing pretty good so far. Her weight is still low, but not as low as we have seen it go. It is still a full time job for us to try and get a few calories in each day. She is so picky and fickle with what she will eat, no more KD, right now its all about pineapple, Parmesan cheese and pickles. Basically we parade through the cupboards and fridge and ask, "will you eat this?" Then she shakes her head no, and we move on to the next item. When we get to something that is someones favourite (pickled banana peppers for example) she will smile and say "no, Daddies." She loves to name who's is who's right now.

She is not as tired as we were expecting, although that could come in the next two to six weeks. Most of the side effects, we were told, will be at their worst after treatments have ended.

Last treatment.

Charlottes radiation tech ladies.

Pink is the field that they were targeting with the radiation.

Yolanda even got in on the presents! Both the girls were spoiled.

We are sticking pretty close to home, trying to get back into a schedule for now. Its so nice to be home, although we are not quite sure what to do with ourselves. We are hoping to get some of the renovations finished in the basement... we started fixing up the mess that last summers flooding caused back in January only to have to leave in the middle of it all when her tumour came back... time to pick up the hammers again.

Charlotte's next MRI will be the beginning of April. It might give us a little direction as to the next stages of this journey. At least we can concentrate on something different for a few weeks.

Thank you so much to everyone who has been supporting us during this journey. Prayers, financial help and encouragements are all very appreciated.

Blood Donations Needed

2011-03-09T22:34:00.000-08:00

I wanted to pass along something that I read on a friends blog. (We met her and her little daughter quite some time ago while we were both admitted during the girls chemo.) I have mentioned blood in my blog posts before but I felt that I should dedicate a post to attract some more attention. Please read what she wrote a couple of days ago on her blog... it makes me shiver to think that this was likely someone we know and it could have easily been Charlotte.

"People have been asking what they can do so this is something you can do, in this week alone up at Children's I watched two or three kids be sent home not getting their blood transfusions because they ran out of blood, so you can go to your nearest blood donor clinic, which you can find at http://www.blood.ca/, and donate some blood. This doesn't matter if you are in Calgary, Vancouver, Toronto or anywhere as it will make a difference in someones life."

Charlotte has needed over 30 blood/platelet transfusions this year. If you have donated blood this year thank you! If you have ever thought about it... now is a great time to look into donating! If it has never crossed your mind before, please take a moment to consider all the people who use donated blood...

Click on the chart to make it a bit bigger.

Yikes, Charlotte had had three brain surgeries and nearly a year of cancer treatments!

A picture from last May... donated blood was used to prime the machine used to collect Charlotte's stem cells.

Did you know... Here are some interesting facts I found on the Canadian Blood Services Site

One blood donation could save three lives.

Blood is perishable, and has a 42-day "best before" date. That means we can't stockpile it for future use, and why we continuously need blood donors. While 42 days is the maximum shelf life, most donated blood in Canada is sent to hospitals within a week. Platelets only have a 5-day shelf life, and make them a constant challenge to supply, particularly after a long weekend.

The total experience takes about an hour. This involves the health assessment and recovery time. The actual blood donation only takes about 5 to 15 minutes.

A healthy person can donate every 56 days. (Seven times a year)

On average, every 60 seconds, someone in Canada requires blood or a blood product. Canadian Blood Services serves over 800 hospitals across the country. Demand for blood is growing steadily by 2% every year. That may not sound like much, but this year that means we need an additional 17,000 donations.

Between our 41 permanent locations in major cities across the country, and the hundreds of mobile clinics we operate, there are over 20,000 blood donor clinics per year. Chances are there is a blood donor clinic somewhere near where you live, work or play. To find one near you, use our handy Clinic Locator, or call us at 1 888 2 DONATE.

Please please please... for all of our new friends at the hospital... donate if you can. If you are not able to donate there are other ways to help, check out the website, and help spread the word.

February 25th: Flames Game

2011-03-09T19:45:00.000-08:00

Hockey game post... to come!
Thanks to Kids up Front for the fun evening.

February 24th Thursday: Reptile show

2011-02-27T21:39:00.000-08:00

Waiting for the reptiles to arrive...

What some people REALLY think about reptiles.

One of our friends really wanted to kiss the gecko... much to his moms disgust I think!

Most of them we were allowed to pet. Yolanda was a pretty good sport!

Eeek, big spider, luckily we were not invited to pet this one!

Charlotte liked looking... not touching!

February 17th Thursday: Hanging out in our room... just a few picutres

2011-02-27T21:30:00.000-08:00

Just some cute picutres of Charlotte, she had just finished up two hours of hydration over in the clinic so she looks a little puffier (and healthier) than normal. She was tolerating my picture taking a little better than usual so I had to take advantage!

February 15th: Magic Room visit

2011-02-27T21:20:00.000-08:00

Charlotte is on a pineapple binge! Here she is sharing a bite with Grandpa.

She is particular though, it must be cut teeny tiny and served with a toothpick.

A trip to the Magic Room to celebrate her halfway through radiation day.

A princess with a gift as big as she is!

You can see how fast her hair fell out this time, the pictures with Grandpa were taken on the 13th then the Magic Room pictures were taken on the 15th! This last one she has her valentines day sock... she put all her chocolates in here to cary around. She even insisted on taking it to bed with her. But then we forgot to take it away once she fell asleep... woke up to find some melted chocolatey jammies in morning. She did smell good though! Like waking up with a fresh chocolate chip cookie.

February 10th Thursday: Pets at RMD house

2011-02-27T20:40:00.000-08:00

A few fun pictures to up... The house had some pets in for an evening for the kids to play with.

Charlotte LOVES bunnies, I'm not sure why or how this came about. She calls them 'hop hops' which is also what she calls pancakes. (We make them bunny shaped to encourage her to eat.) She was pretty happy to see this one, too shy to pet it much, but really enjoyed watching him. She talked about it for days afterwards, if we prompted her with did you like the pets? We got a big smile with a nod and a little voice that said "hop hop."

You can see here that she is starting to lose her hair again. It was a bit of a shock how fast it fell out this time! With chemo it took 7 months of thinning before it all came out, with radiation it was completely gone within a week- except for a tiny little patch on the back that stubbornly held on for an extra week. Now it is all gone except for a little fringe of fuzz around her face. But the morning it started to fall out it was crazy! It was totally 'in' not even shedding a little, she went under and had her treatment and by the time she was waking up there was four big clumps of hair on her pillow.

February 16th Wednesday: A typical day of radiation

2011-02-19T14:00:00.000-08:00

Following are some pictures from Charlotte's typical morning over at the Tom Baker Cancer center over at the Foothills hospital. We get all bundled up to drive all the way over there (its about a 5 minute drive). I feel like I should warn you that there are some pictures of her under anaesthetic and with her plastic helmet clamping her to the table. This is daily routine for us, but it might be a bit of a surprise for some people to see.

Here I am all cozied up with Daddy, I get to ride in the elevator... going down to the basement.

Watching tv with Daddy while the nurses get ready for us.

I get to pick out a sticker for on my countdown sheet.

I sit nice and still and watch as they put in the anaesthetic.

Off to sleep on Daddy's lap.

Going through the radiation door.

The wonderful nurses, techs and anaesthesiologists who take care of me during treatment.

They are careful to keep my oxygen at a good level while I am moved into position.

Getting everything set up, I can't be more than 2mm from my original position!

This big machine rotates around to find the four angles that my radiation needs to come from.

Here it is moving around, the bed also swing around on the floor. Everyone has to leave the room, but they keep a close watch on the cameras.

All done! Now they can take off my mask and special helmet.

Waking up on Daddy's shoulder. Some days are easier than others, sometimes I need to have a good scream to get it all out of my system. Then its time to get dressed and head back to the Ronald McDonald house. Mommy makes me my favourite Kraft Dinner for breakfast, sometimes I'm still too grumpy to eat.

February 7th Monday: Bingo Fun at RMD

2011-02-18T21:57:00.000-08:00

Monday night bingo, everyone has fun when Brynn gets to call the numbers. I know I have written about bingo before, I just thought I would share some pictures of one of our games. There were not too many kids that night so the girls made a huge haul... more stuff to bring home!

Our beautiful bingo caller Brynn! (and her mom)

Yolanda is focused!

Charlotte has a full blackedout card... only 6 numbers have been called, this girl is good!

The prizes, we keep one eye on our bingo sheets while the other scopes out the cart.

Here is Rob opening his birthday gift from the girls.I took Yolanda shopping and she helped me pick out a shirt, then the girls coloured up a few pictures. We didn't really do much to celebrate, anything that marks the passing of time is difficult for us to celebrate right now. We are getting closer and closer to the one year mark since Charlotte was diagnosed.

Charlotte is very pleased with her picture.

I am gearing up to do a post with pictures from radiation, thought I better put something fun up here too.

February 8th Tuesday: Prayer request

2011-02-08T22:14:00.000-08:00

Charlotte is having a tough time right now. And therefore we all are. She is so tired and grumpy. Most importantly she is not eating, anything, voluntarily. We are trying everything we can think of, old favourites, fruits, new sweets and treats but she is just not interested in eating. Our healthy diet has taken a back seat. On someone who only weighed 11.4 kgs at the start of treatment there is not a lot of room for weight loss. Within two weeks Charlotte’s weight is down to 10kg, this is the number that in the past our doctors said they would want to see a feeding tube. There are a couple of factors here; one is that she is having radiation and full anaesthetic every weekday- this makes her very tired, the second is that she is on a chemo drug that knocks out her appetite. Rob and I have resorted to forcing in what Yolanda calls “Magic Juice,” basically a thick green sludge of blended spinach, carrots, and apples. We draw up a 10ml syringe every 15 to 20 minutes and pin her writhing little body down. She cries and puts up a fuss, some ends up squirted on the ceiling, most goes down with much gagging... and we do it again in 15 minutes. Once she has gotten a few of these in she seems to perk up a bit and not fuss so much. We can see the effects of getting food in immediately, the days we get more in the better disposition she has too.

We just found out today that her chemo is going to be cycled- take it for 21 days, off for 7. Today was day two of being off the drug; hopefully we will see her perk up for a few days.
We have two things that we would appreciate your prayers for.

The first is if you would please keep Charlotte in prayer at 8:00 every weekday morning, this is the time that she has her radiation. We are praying that God will heal her through this treatment. Some specifics would be that radiation does its job, succeeds in killing any trace of tumour. That anaesthesia goes well each morning- that we will not have to up her dose should her body become used to the amounts used. (Some days she comes out happier than others, some days we can sneak in her eating a cup of yogurt while she is waking up- before she is protesting.) Also pray that Gods protection will be over her and any side effects will be nonexistent, both short-term and long term. That damage to other areas of her brain will be negligible.

The second is for her appetite. That she will be given the strength to start eating again, without any drugs intervention. That she will not be too tired to eat, and that she will not be so tired from not eating. She needs her strength for her treatments and for that she needs to eat. This would take a huge burden off of Rob and me, not having to chase her down with syringes all day.

Thank you all so much for your prayers and encouragements. We appreciate hearing that we are in your prayers- facebook, emails, comments on the blog- these messages are all cherished.

January 25th Tuesday: Getting Radiation Started

2011-01-26T13:06:00.000-08:00

My sister took these picutres a while ago, before the latest surgery.

Hello to all our friends,

Well, here we are set up at the Ronald McDonald house again; we packed a little more stuff this trip so we should be fairly comfortable. The drive up was pretty good, Charlotte slept a good part of the way... all the prior screaming wore her out. Poor girl, for the first time she realized what was going on as soon as we dropped Yolanda off at Grandpa and Grandmas. But once we started reminding her how much fun it was going to be at the RMcD house and play in the playroom, and that she would get to see Jen she perked up a bit. (Jen is one of the staff there that Charlotte loves.) She had a bit of a cough by the time we got to Calgary, we are hoping that it is just from the screaming she did earlier.

We had a huge run around that night with trying to get one of her meds made up. We had forgotten her seizure med at home in the fridge, and needed one dose for the night. So we called ahead, around 2:00 to say that we would not be in until 7:00 and could they please have one dose set up for us. We ended up getting a written prescription... but one that no one in town (who was open that late) could fill because of the ingredients. That was a huge stress; calling and driving all over, that we didn’t need but in the end the wonderful night shift nurses back in Unit 1 made some magic happen for us. Getting the rest of the prescription filled the next morning was another gong show entirely.

This morning was her set up for radiation, and then her first dose. It was very stressful on Rob and I, the mental anguish of what we were doing and why, and to what avail? She sailed through everything sleeping peacefully. The nurses over at the Tom Baker Center had a fancy countdown poster made up for her to put stickers on. Her nurse brought her the sticker box to let her pick one to stick up... Im not sure she is used to handing the sticker box over to two year olds... by the time we were done we had one on the poster, stickers for on her jammies, one on each hand,... and then as she was waking up from the anaesthesia the same nurse held her hand and what was this? A sticker stuck to the inside of her hand as well. Maybe she was helping me by gathering supplies for her scrapbook! We will see if she gets offered the whole box again tomorrow. Our regular nurses know this about Charlotte and always have pockets full of stickers.

We were up a bit earlier than normal and Charlotte wasn’t allowed to eat so it made for a grumpy little girl. After showing up at the Tom Baker at 7:30 as we had been told, we waited around for half an hour, today’s appointment went a little longer too so everything could be set up for her. We were shown all her imaging and radiation scans it’s quite a big area for being called “focal.” They are covering the whole area left from the original tumour, everything around the surgical cavity. (Its around the 8-9 cm size.) They are concentrating four different beams of radiation and we got to see how the machine moves around and lines everything up. Most of her time was spent moving her around millimetre by millimetre, and then by point of a millimetre to get her in the right position. We watched on the camera as she got her first radiation treatment, she looked so tiny in that big machine. There were all the patients head moulds lined up in a cupboard, Charlottes seemed so little compared to all the adult masks. Rob and I both felt that little and scared while we watched Charlotte on the screen.

She woke up from the anaesthesia slowly but not screaming as she has in past times. Her Anaesthesiologist thought he could lower the dose a little for next time so she will wake up easier. We hung around until we were sure that she was up and stable and then headed back to the RMcD house to get her dressed and have breakfast. We got a small shock when we paid for parking, $7 for our stay; we were exactly one minute over the time so had to pay for an extra half hour. I guess we will have to see if we can find out if there are any parking passes/assistance available since we will be doing this every day.

We have had a pretty good day otherwise, got lots of playtime with the new dolls in the playroom. I was happy to see that some of the old toys were replaced with some of the Christmas gifts that had been donated for the kids. The new dolly stroller doesn’t get much rest from Charlotte; she got one for Christmas at home but has not had much of a chance to play with it yet. Her mommy was excited to see some new craft room supplies too! I brought up her scrapbook and hope to get caught up.

January 16 Sunday

2011-01-16T22:10:00.000-08:00

I have been putting off this blog post for a few days now; I am just not sure what I should write. Things have been moving so fast that it’s making out heads swim!

Let’s start with right now: Charlotte is doing well; we kept close to the RMH for the weekend. She is off her morphine and now just down to Tylenol with the odd shot of ibuprophin to keep any pain in check. She actually does not even seem to be in any pain, she just gets really irritable and grumpy and we know it’s time for another dose. She is eating a little more each day, originally all she wanted was yogurts but we have progressed to bug shaped pastas and cheese tacos. She is sleeping fairly well, but usually finds her way into our bed around 5 in the morning- at least she is still able to sleep until 9 once she is all tucked in. We have had lots of visitors stop by, nice to have so many people that love us all so much. Charlotte sure has had fun with all her aunties the last couple of days.

Friday she had a big MRI to see how surgery went and also map out her brain with greater detail for the radiologist to get his ‘mapping’ started. She came out of the anesthetic screaming mad; she screamed/cried for two full hours, nothing would settle her. This is not encouraging since we will have to be knocking her out like this every day for radiation. We were told that her LP came back clear- Praise God! That means that this tumor is still in one area and although it was quite big and had three ‘fingers’ that reached out a little deeper into her brain it is still contained. The MRI confirmed that our surgeon is a skilled man and once again got out everything that could be seen.

We were discharged on Friday around 8pm… it was a bit of a gong show to get out of the hospital, our nurse almost had us out by 2:00 but then there was just so much back and forth between her surgeons office, oncologists office and radiology oncologist that we didn’t know which way we were going. We were told at one point that we could even go home for the weekend, but then that offer was retracted with the plan that we might be able to sneak home for a couple of nights midweek.

She is getting “fast tracked” for her radiation. When Rob and I met with the radiology oncologist back in November he said that it usually takes 4 weeks to get everything set up before she would actually be getting the radiation. Our oncologist said that she wants to see us started by next week. She does not want to wait an extra moment, we saw that Charlotte’s tumour grew 4 cm in a month; we can’t wait that long again.

We have had a lot of difficult conversations over the past week that have left us with heavy hearts. Some were in preparation for if the LP came back positive. Thank goodness that has been put to rest for now. We have talked about the long term side effects of both focal and full cranial-spinal radiation. (We are still planning on giving her the focal radiation.) When we asked Charlotte’s oncologist how confident she was that radiation would stop this tumour her jaw tightened and lips pursed: she made a zero with her fingers. I think that when your doctors and nurses look like they are holding back tears it is not a good sign. She really has no numbers to put on this case, but she said that her feeling is that when we came in back in April she would have put a 60% chance of a cure on it, now she says she feels more like 30%. She told us that if Charlotte is around in two years she will be very happy. We are trying very hard to stay positive. Charlotte is a strong little girl, she has proven that many times already, and we just pray that she has it in her to show us once and for all. PNET tumours are very aggressive but they have also shown to respond well to radiation. We delayed radiation the first time because she was so young. We cannot delay it any longer; at least we were able to let her go another 10 months before we started. A dark little voice wonders if delaying has lessened her chances. We must refuse to look back, but it is getting harder to resist listening to that ugly voice. We know that we are in one of the best places we can be for her treatment. We have so many caring nurses and doctors. Charlotte’s oncologist is wonderful and we have no doubt that she is doing the best to give her the best possible chance.

January 12: just a few picutres

2011-01-12T21:02:00.000-08:00

This girl is amazing... less than 24 hours out of surgery and she has such sweet little smiles for us.

Here she is showing off her right hand movement. High Five!

I'm not sure what this game was all about but it got her laughing.

Today went quite smoothly for Charlotte, we got moved out of ICU and over to our "regular" unit around noon. Charlotte is still on morphine, we tried cutting it back but she seemed to get quite agitated so it was bumped back up. We will take it down slower tomorrow with more Tylenol. She was generally happy all day, very tired though, she has not picked up as quickly as she did with the last surgery. It was a bigger operation this time, they opened up nearly as much as with her April surgery.
Things are moving quickly to get radiation started, we were told it usually takes 4 weeks to set up. Now our oncologist is saying that she hopes we will be started by next week. There is a lot to do to make that happen, a couple of extra CT and MRI scans, mapping her brain, making her a mask. Our doctor was originally saying we would get to go home for a few days, but with the "to do" list she rattled off I'm not sure how it will get done in time for next week.

Another short post for today..... thank you all for your prayers for our family
good night

January 11...later on

2011-01-11T22:46:00.000-08:00

Charlotte's out of surgery and resting in ICU. She did well (and so did her team of doctors and nurses) Time was all a blur today so I'm not even sure how long her surgery was... it was longer than last time I'm sure. By 9 or maybe 9:30 in ICU she was making a few little words and giving us the yes or no to what she wanted. She got a couple of balloons that she really enjoyed playing with and even made the attempt to grab at them with her right hand! She was able to lift her whole arm right off the bed and swat the balloon string so we were all encouraged about the range of motion that she will be able to recover.Tonight will be long, listening to the monitors beep. She is hooked up to about a thousand things that check her every wiggle which makes her really mad- especially the IV lines in her left hand.

Doctors think that they got about 90% or so of the tumour that they could see, but we will not really know until her next scan -likely on Thursday.

*And just because friends have already been asking...I must say that we have not yet seen her stitches... Im almost expecting them to be done up with rainbow thread or spelling something out, after all the fuss there was last time. The bandage is stapled down pretty good though so we probably wont see them until tomorrow or the next day.

But now its time for bed... at least to rest if not sleep.

Tuesday January 11

2011-01-11T16:28:00.000-08:00

Sorry that this is all a jumble, but I wanted to share what we know at this point.

As of 4:00 Charlotte just came out of her MRI, we had a quick talk with our doctors, and she is on her way to the OR. The tumour was bigger than they thought based on the CT done in Cranbrook, with fingers that go a bit into her brain. (The last two times the tumour was more focal.) Surgery will be a little more complex than they first thought, with a greater chance of permanent weakness as a side effect. Her surgeon said he will likely only be able to get 80-90% of the tumour this time. But he was very confident that this will greatly boost the effectiveness of radiation. Her spine looked clean, so their assessment at this time is that it is still a local recurrence. The tumour did have some hemorrhaging and thats what they suspect caused the loss of motor skills that we noticed on the weekend. The tumour is farther into her motor cortex, the worst case for longterm loss from this surgery is that she could lose the use in her right arm/hand... but that her leg-with physio- could recover eventually... thats the worst case more likely is that she will lose a little more usage in her arm, we might not even see it in her leg. Its crazy to think that there is a 4cm tumour since her last MRI.

Our doctors here have swung into motion with getting radiation set up, we are still talking about the focal radiation type- much less damaging than the full radiation. Charlotte had an LP done to check her spinal fluid just to be sure that there is nothing else hiding that would change the course of action. But that will take about three weeks at minimum to set up, then it will be 6 weeks of treatments. And more chemo.

She is in surgery now... please pray for our little girl.

Monday January 10th: In shock, again.

2011-01-10T14:28:00.000-08:00

A few pictures I took today after our appointments, our cheerful little girl.

So our doctors looked at the CT imaging sent up from Cranbrook and want to move quickly. It looks as though there is some bleeding (from the tumour) and that's why her motor skills were affected so rapidly overnight. They were discussing putting her in for an MRI today, and then if everything looks as they suspect they would keep her under and go straight into the OR. After a few calls back and forth it was decided that it would work better to wait until tomorrow for scheduling. !?! We were quite shocked that they decided to move so quickly, obviously this was faster than we anticipated. Charlotte seems to be so well, on the outside at least, that we thought we might be up for MRI and then home until we made some appointments. Anyways we will be heading into MRI at 2:00 tomorrow and then likely into surgery sometime between 3 and 4. We are able to check into the Ronald McDonald house tonight and get ourselves geared up for tomorrow.

Of course we are asking for all your prayers and encouraging words to help us through this time, again.

January 8, 2011: New year... same old story.

2011-01-08T20:59:00.000-08:00

We had really hoped that the year of 2010 it would take all its heartache with it. Sadly we have to admit that 2011 has brought its own grief.

Up until yesterday we have had a wonderful time at home, it has been a little hard to adjust, but everything has been so good overall. The girls are both thriving being home together, Charlotte has improved greatly and Yolanda is enjoying her little shadow. We started to renovate our basement. (Our basement flooded three times this year while we were away and it was finally time to deal with it!) Charlotte started physio and occupational therapies. Rob was getting some jobs lined up, getting quotes together and stuff.

This morning I lifted Charlotte out of her crib as usual and plunked her on the floor. She landed funny and crumpled into a heap. I thought that was odd but maybe she had stepped on a toy or something. So I picked her back up and set her on her feet... she took one step, her right leg went all wobbly and she fell again. And I knew what that meant. Rob and I watched her every move during breakfast, her right hand had slightly less function, her leg was doing exactly what it had back in April.

After talking to the oncologist at the Children’s Hospital we went up to emerg here in Cranbrook. Our nurses and everyone there were great, and a CT scan was done right away. It seemed like the doctor had hesitated to tell us anything, until they had talked to our oncologist up in Calgary... I’m guessing that her brain is such a muddle from surgeries that they didn’t want to make a wrong call on anything. As far as we can tell from the CT there is something regrowing in the same area as October’s surgery. It looked about the same size, hard to tell from these scans exactly.

So it’s back up to Calgary for us. A meeting with our doctors Monday and an MRI is planned for Tuesday; it was good that our oncologist was the one who was on call this weekend- plans are already being put into motion that would have otherwise waited until Monday.

And now I must go pack...

December 23 to 26: Christmas Holidays

2011-01-08T16:11:00.000-08:00

I was hoping to get some form of Christmas letter up here... but I think all our friends and family (and followers form afar) have been kept up to speed with our family this year so I will just share a few photos. (I cut my index finger over the holiday and it hurts to type, this is my actual excuse for not putting much up here.)

Decorating our tree.

Auntie took over the camera so I am actually in a few picutres!

Showing her baby the tree at Oma and Opas house.

Christmas cousin picture... three cute girls!

Opening a gift from our friends at the Ronald McDonald house.

Into our goodies at Grandma and Grandpas house.

Just a few cute picutres...

2010-12-11T21:35:00.000-08:00

I found some fun picutres we took last month that haven't made it onto the blog yet.

Playing dress up in Yolandas room.

December 10th Friday: No Cancer today!

2010-12-10T23:52:00.000-08:00

We just got back from Calgary yesterday. We are generally happy with everything we have learned, but do not feel excited or victorious yet in any way. Her MRI showed no tumour growth. Something did look different but it was not the right shape to set off the cancer alarm. Tumours will tend to grow round, like a ball, and this was long and thin. It was also not in the same spot that we would have expected any tumours to re-grow. Our oncologist said it could be something post-operative, scar tissue or inflammation. Time will tell, she said it could shrink or disappear by her next MRI. As long as it does not change, but if it grows bigger then she might suggest that we have another surgery/biopsy to take a look. So we are scheduling her next MRI for in 6 weeks- around the 19th or so I’m guessing. Until then we will try to have a somewhat normal life, even if it’s just a week at a time. Christmas will hopefully be a good diversion and help us to pass the time.

Waiting for her MRI, when we finish the book we can just read daddys shirt!

Our doctor asked if she could publish a report on Charlotte’s case. In her consent form she said “This finding is very rare and only a few cases have been reported (5 cases of medulloblastoma and only 2 cases of sPNET) but none in sPNET treated with high dose chemotherapy like Charlotte. The reason and meaning and potential impact on survival outcome of such maturation in sPNET are unknown.” My first thought after reading that was that it sounded dismal, but actually it could mean 100% survival rate too. Rob groaned and afterwards he asked why we could not have had something common, like leukemia. Who are we that we would wish leukemia on our child? But at least they know what to do- what drugs and procedures work best. None of this guessing.

Brynn, Charlotte and Jocelyn at RMcD House.

We spent an hour over at the Ronald McDonald House in between appointments. It was so nice to see everyone there and catch up. Although I am more than happy to be home, I miss seeing all the families there. I realized that when you take a child with cancer to the hospital by the end of treatment you will come home with 20 more. It’s such a wonderful thing to have a place to be where everyone understands what you are going through. Here are a couple of pictures I got of the girls who were there when we stopped by. It was so nice to see the kids together. Miss Brynn, we were happy to learn, only has 3 more radiation treatments to go. It has been a long painful fall-winter for her (and her poor foot) but here she is with a beautiful smile and a story to share with the younger girls. Charlotte met her in the hospital in July and attached herself immediately; Brynn was so good with her little shadow. The other little one is Miss Jocey, she is from a town near to us. (We have met a lot of people through the House that live in the Kootenays.) She is a really cute girl, and such a little trooper. The chemo that was prescribed for her the first time around didn’t work as well as the doctors hoped so now every two months or so she is evaluated and they hit her again. One of the hardest things about this whole thing is not knowing when we going to be done, her poor family is living with this reality as well. A few of the other moms and I shared some tears and hugs over the loss of a beautiful young lady who we had met at RMcD house. Kaila had just finished her chemo protocol and seemed to be doing fairly well; it came as such a shock to hear of her passing. My heart grieves for her family.

Reading Christmas stories, snuggled with Brynn-a good place to be!

We also saw the paediatric psychologist (that Charlotte had the play time with on our last visit.) She went over some of her report with us. She was trying to place Charlotte in a percentile for growth, so that she would have something to measure and track as time goes on. The range that they consider “average” is between the 25 and 75 percentile and she said that Charlotte was around the 23rd percentile for most things. This did not seem to surprise her; she said that even without any effects from the tumour or surgeries just the chemo and being confined in the hospital for 6 months would set her back. Her gross motor skills were particularly weak, as well as her language. This did not really surprise me either, but it was still a little hard to hear that out of 100 kids my child’s verbal skills would only be better than about three of the other kids. Now that we are home and have been given a potential 6 weeks before we have to in Calgary again we are getting some therapy set up to help out with these things. I have seen that Charlotte did not really develop while she was on the chemo drugs, but this last month at home she has shown a good development. Hopefully with a little more guidance we can help her catch up a bit more.

A pile of meds.

Diet Ideas

2010-12-10T23:49:00.001-08:00

Breakfast, some make it in I'm sure.

We are still trying to hold on to our diet changes. I’m finding it frustrating that I can’t seem to find the organizational skills (or energy) right now to come up with any sort of meal plan. Rob and I are both feeling a little unfocused with everything at home. It’s hard to plan when you are not sure how long you can plan for. We both seem to be very distracted. It’s frustrating that we don’t know how to “fix” that. In the past I think we used to measure a day by what we accomplished in it. Now most days seem to come up empty of accomplishments. I don’t feel that’s entirely a bad thing for us at this time in our lives; I’m just not sure how to put it in perspective. Wow, case in point, let’s get back to the diet thing! Many family members and friends are wondering just what the heck we are trying to do. Well, to be honest we are pretty much making it up as we go.

Sisters, glad to be home together.

We have read a book by Dr. David Servan-Schreiber called Anticancer: A New Way of Life that we are using as a base. It seems to have a good overview of all the things that we have been putting together from all these other resources. The main portion of his book is based on diet, specifically what we should be adding to help reduce the risks of cancer. His colleagues have put together a cook book that uses these anticancer foods.

Foods that we should include in our diet to help reduce the risks of cancer:

Cruciform Veggies- Cabbage, broccoli, kale
Garlic, onions, leeks, shallots, chives
Flaxseed
Soy
Big Mushrooms- especially maitake and shiitake
Berries and pomegranate
Tomatoes
Seaweed- I’m still not sure about trying this one with the girls!
Omega 3s –fish and flax are good
Carotenoids- carrots, yams, squash, pumpkins, beets
Vitamin D
Probiotics
Citrus fruit
Herbs and spices- Turmeric, curry, ginger, chilli pepper, clove, parsley, coriander, cumin
Dark chocolate- this is my favourite on this list
Foods that we need to limit or eliminate:

Red meat and all cold cuts
Sugar: White, brown, corn syrup
Hydrogenated oils
Dairy products
Foods with a high glycemic index
White flour
Non organic produce*
Peanuts/Peanut butter
White rice
Cookies/Cakes
Cola’s/Coffee/Alcohol
Fruit Juices that don’t have fibre
Non-Organic dried fruit
All Artificial sweeteners

Eskimo Kisses.

*I have found lists online of various fruits and veggies that tend to be higher (or lower) in the amounts of pesticides found on them, we are going to try shopping selectively to minimize contaminants. I think we would go crazy if we tried go switch over 100% to organic foods so we hope to focus our energy on the main things.

Foods that don’t need to be Organic

Onions
Avocados
Bananas
Corn
Pineapple
Mango
Asparagus
Peas
Kiwi
Cabbage
Eggplant
Papaya
Watermelon
Broccoli
Tomatoes
Sweet Potatoes

Foods that should be Organic

Any Meat and Milk Products
Celery
Peaches/Nectarines
Strawberries
Apples/Pears
Blueberries
Red/Green Peppers
Lettuce/Spinach/Kale
Cherries
Potatoes
Carrots
Grapes

November 25th Thursday: News from our Doctors!

2010-11-28T16:00:00.000-08:00

So what did we learn with our big meetings up in Calgary? More of the same I guess, nothing that really strongly pointed us in one direction. It was so cold there, we heard on the radio that it was within a degree or two of the temperature at the south pole.

First we met with the Radiology-Oncologist over at the Tom Baker Cancer Clinic. We sat in the waiting room for quite awhile watching people come and go, mostly trying not to make eye contact so that we would not have to explain our story. Most of the other people waiting were 70 to 80 years old, many in wheelchairs – not somewhere we wanted to be bringing our 2 year old. A volunteer came along and tried to engage in conversation but Rob and I were both feeling sick with the whole situation and it did not go well, despite her best intentions she made us feel way worse. So here we are after a long, crappy drive sitting sullen and tearful in our chairs when one of our nurses from the Children’s Hospital came over to say hi. I don’t think she knew it but that little visit was just what we needed to pick ourselves up and get back in the mindset that we needed before our meeting. I know she was over at Tom Baker because she actually had a job to do but I think she had a job to do at that time because God knew that we needed a friendly face. The meeting with the doctor was informative; I think we surprised him from some of our questions. I’m guessing that a lot of his patients are still in the shock from diagnosis stage, or don’t really have such a situation that radiation is such loose option. He explained how they figure it all out and how they would set her up for radiation. He talked about how the radiation would hit her brain, and how they target the tumour site. She would be fitted for a moulded mask of her head-with breathing tube, with less than 2 mm of wiggle space. She would need to be under full anaesthetic each day. She would go in every week day for 6 weeks. We asked how much this would add to the chance of a cure for her cancer. He told us “it would not do nothing.” Different tumours respond with different degrees to radiation and we don’t really know how her tumour will act. I understand that no one really know what to do. But how are we supposed to take it when we are told “it would not do nothing,” as in it would do something... but what? To what degree would it help her chances? This is not something that anyone could answer. The overall impression that we got from the radiologist was that he would rather wait and see what the next couple of MRIs look like before we sign her up for radiation.

Princesses love their sunglasses!

Our next meeting was with a paediatric psychologist, this was basically a 2 ½ hour play date for Charlotte. She was given puzzles and crayons and picture books to try and form a baseline of where her development was at compared to her peers. I think that the doctor was happy with her development in all areas except language. Charlotte understands everything but her verbal skills are not what would be expected for a two year old. This does not really surprise us; I don’t think she learned any new verbal skills during chemo in the last 6 months. In the last month (since we have been back home) Charlotte has had a huge growth in language, but she still had a lot to learn to catch up. We will be given a report on the doctor’s findings next time we are at the hospital.

The next meeting we had was with a neuropsychologist, this was to learn about the area in Charlotte’s brain that would be affected with radiation- and what the long term side effects could be. The area that her tumour was in will affect her word memory and processing skills. It is likely that reading will take more effort for her; she might need an aid in school. It sounded that there is still a good chance that she would be capable to go on to college; she might just need more time than others. The impression that this doctor gave us was that Charlotte had a chance of having these weaknesses already, and that radiation would not add much change to her development. That being said the form of radiation proposed is relatively new; it has only been used in the past 5 years. The doctor told us that the five years worth of data they have so far looks like it’s fairly good at preserving metal capabilities (in comparison to what she would have been offered 10 years ago.)

Making Christmas gifts- yep, painted rocks this year!

Our last meeting was with our oncologist. She took a look over Charlotte and thought she was doing well. She admitted that Charlotte’s case had kept her awake a few nights wondering what the best course of action was. Her research into similar cases came up inconclusive, there were two cases found- not the 5 to 8 she thought originally looked similar. The one that had the most data was of a child in the states; he (she?) was about Charlotte’s age when first diagnosed. The parents at the time did not do radiation and he lived healthily for thirteen years. Then a new tumour was found and they did radiation- thirteen years later. We liked the idea that even if radiation was inevitable in the end they were able to hold off for so long. But this was just one case, that’s not much to go off of. This change in her tumour makes our doctor vary nervous; she does not want to trust it with waiting. Although it could act benign and we could have many years before action is required she thinks that it still has the capacity to turn ugly and metastasize. If we only look at what came back from pathology from this time it sounds like she would be more comfortable with waiting; but knowing what tumour it came from originally changes things. We scheduled her next MRI for as soon as possible, we are waiting to see what it looks like before we make any decisions. In the meantime Charlotte was prescribed two oral chemos that we can give her at home. Tamoxifen and Isotrentinoin, it is making us sick to have to give these to her. Within two days we started to notice changes in her disposition, she seems to be sadder, even less patient with getting her way and tired. After sleeping relatively well for three weeks staying asleep seems harder for her too. I’m not sure how many more staying up from midnight to 4 am shifts we can handle!
So that about sums up our doctor visits on our last trip up to Calgary. Basically it leaves us waiting to see what we can learn from her next MRI.

Making snow angels, out the first day it snowed.

November 21st Sunday: Three weeks at home!

2010-11-28T15:47:00.000-08:00

The last post ended hoping that we would have more info by the following week; well we just finished our meetings in Calgary now and are home. We think we have a tentative plan in place for Charlotte’s immediate treatments. We talked to four different doctors, and still got nothing conclusive that really steered us in one direction or the other. Since just waiting for these meetings took us to week 4 post surgery we have decided to wait and see what her first MRI shows. Then we will come up with a surer plan. But backtracking a bit...............

In the weeks between our Calgary appointments we started looking at Homeopathic, Naturopathic and Integrated methods and medicine. Rob and I really have learned a lot about alternative methods for treating cancer... and there is a lot of varying ideas out there once you start looking. Our phone calls have taken us to San Francisco, a couple places in Mexico, Huston, Switzerland, Ontario and Vancouver. We have had lots of helpful suggestions and referrals from friends and blog readers. We have watched several DVDs and read countless books on different methods. We have researched everything from high dose vitamins, plant based concoctions, healing salves, and radical diet changes to DNA testing used to configure a personalized chemo regime. We have done a lot of research to try and sift through all the herbal remedies, fancy berries and plant extracts that different companies tout as cancer healers. But through it all we learned that there is no single thing that will cure her. We have learned a lot about how our diet can affect cancer and have decided that that was a good place to start.

The first thing we did for Charlotte is to try a diet change for our family. This has not been easy but I anticipate as time goes on it will get easier. We have cut out all added sugars, no candy, no baked goodies, and no frozen juice punches anymore. We have drastically limited our meat intake as well; mostly to cut out the red meat. We are also trying to eat as much raw fruits and veggies as we can. Many alternative cancer care methods rely on a vegan, raw diet. While I don’t think that this is entirely realistic for a two year old there are a lot of ideas from it that we are trying to incorporate. For someone who used to plan the entire meal around the type of meat each night this is taking some getting used to! We are trying to include some juicing and smoothies to boost her fruits and veggie intake, unfortunately as soon as the juice gets more exotic than apple-carrot she turns up her nose. The idea behind all this is that she needs to boost her immune system and be a healthy as she can. We all have cancer cells in us but usually our immune systems can keep them in check. It looks like tumours like an acidic environment and spikes in glucose in her system basically feed the tumour so we are trying to keep an even keel with those.

The second thing that we are going to add is some Naturopathic remedies. Our theory is that even if they don’t help at least they will not hurt her- more than I can say for chemo! We have spoken with three different Naturopathic/ Integrated doctors (Integrated meaning they have studied both conventional and natural methods) and have narrowed down a list of remedies that we are going to apply. We talked to integrated doctors both in Switzerland and Vancouver who independently gave us the same three remedies to try, so we plan to use these things with the Naturopath here in Cranbrook keeping a close eye on her. We have double checked this list with Charlotte’s oncologist at the Children’s Hospital and she has given us the ok on them. Reading over the list she had a little smirk on her face that showed her true thought on these ideas but she did say that none of them could interfere or harm her in anyway.

November 3rd Wednesday: An update without facts?

2010-11-03T21:46:00.000-07:00

The Picutres are from Halloween up at RMcD house... nothing to do with the post today.

Ewww, Im not sticking my hands in THERE!!!

Well the big Tuesday meeting came and went... and do we know much more than we did on Monday? We now know that no one really knows what we are dealing with. Our oncologist called today and said in all the searching she has done (with colleagues in Toronto and LA) she has come up with 5-8 cases that look similar to Charlottes. She is still going to take a closer look at each of them, to see if we can draw any parallels for formulating our next step. That’s 5-8 cases in all North America; so we are not working with much background here.

OK, now that Mommys got it all cleaned out.

Charlottes tumour had changed in composition it is more “mature” the cells are not dividing as rapidly making it have more benign characteristics. They did not actually call it benign though. This is still better than the original tumour but it does not mean that it is one hundred percent predictable. A positive thing about this is that there IS less of a chance for it to metastasize throughout her brain and spine. One problem with this is that those cells, if any were left from surgery, are not as susceptible to chemo. Most chemotherapy drugs target fast growing cells.
It sounds like there were two ideas on the table during this meeting and by the end the conversation was based more on personal biases than on facts. One idea was to hit the cavity with a focal radiation; the other was to wait and see. They both have pluses and minuses of course and our problem is that there was no consensus between all our doctors. If the doctors would have all agreed on a treatment it might have made our decision easier. That will leave it more up to us to decide what we think the best course of action is.

Radiation would likely be 6 weeks of treatments, a rough and rotten 6 weeks for Charlotte. It would leave her with some (unknown) permanent damage. It might stop the cancer from coming back or changing again. But it might not. From the beginning we have been told that radiation for someone under 3 is not desirable because the brain is still growing so fast at that age. Is the cost worth a higher chance of a cure?

“Wait and see” would require MRIs every 6 weeks for the first while. It would also likely involve some oral chemo drugs that we would take at home. Maybe the cancer is gone already. Maybe this last dose of chemo will wipe it out. If it did keep growing this might keep it in check; we could catch it and try radiation then- buying her more time. What if this fickle monster came back, spreading faster than we could catch it?

We have asked to meet with an oncology-radiologist to discuss what going through a focal cranial radiation would look like for Charlotte, what side effects- during the procedure and long term. We have also asked to meet with a neuropsychologist to discuss what targeting this area could do for long term mental and physical difficulties. We are also going to look into alternative treatments, just to see if there is anything else available for consideration. We have a lot more to learn before we make any kind of decision, unfortunately time is not on our side.

Brain surgery pumpkin... not much to work with in there!

And that’s all I have for today... nothing conclusive at all. Just some more good ol’ hurry up and wait. We plan on our meetings being mid next week so we will just make the best of a few quiet days at home.

The Ronald McDonald House crew put on a fun afternoon!

October 29th Friday: Hope... and a silly story

2010-10-30T00:09:00.001-07:00

Just two days after surgery and Charlotte was doing so amazing that our doctors almost discharged us today! There was just one small thing they wanted to keep an eye on for one more night. So she should be out in the morning. The prayer of our heart was not answered in the way (or time) that we had hoped for but she is doing great and we have gotten some positive news.
Right after surgery we were told that her tumour looked different and we have seen that go either way with other friends here. So that really left us up in the air. Something that scared us was that there was a fluid with the tumour that her neurosurgeon said looked suspicious. If that fluid came back with cancer cells in it that would have brought full cranial and spinal radiation back to the table. Although we don’t have our final in-concrete results from pathology we have heard that there was nothing cancerous in that. They also said that the tumour looks like it is formed of “mature” cells, meaning not as aggressive or metastasized cancer cells. It appears to be something more benign, possibly meaning it would need no radiation at all! No matter what the final results from pathology are we will still not be finished, but if it is benign we would have a much easier road ahead. An oral chemo that could be taken at home with monthly checkups was what her oncologist mentioned. BUT we are trying to stay open with this until we hear back their final results because there are too many variables. I just wanted to share this glimmer of hope with everyone who has been praying for us and sending us encouragements.

I would like to share a little laugh that we have had. I’m not sure if the fact that we can find this humorous (despite the details) is an indication of how accustomed we are to hospital stuff or just how crazy and tired we are.

The first time Charlotte came out of surgery her head was stitched up beautifully. I remember a few nurses commenting on it, and it seemed that for such a huge scar everyone thought it was really nicely done. We had nothing to compare this to and just assumed they say that to every parent to make us feel good. The stitches were evenly spaced and all the same size, I guess the bar was set high.

Scene 1: Charlottes bandage fell off early in ICU we got a peek at her stitches... they were not bad but just not as pretty. Rob asked the doctor that came in to check on her bandages who the heck did the stitch job this time (with a negative inflection.) The doctor peeking at her bandage pursed his lips and asked why... and so Rob told him that it just wasn’t as nice as last time. Well -of course- we were talking to the doctor that had put them in! Then he got a little defensive and explained that since they went over the original incision her had to work with the scar tissues. So there was some back peddling and awkward moments until the doctor left the room. Scene ends.

Scene 2: That afternoon while talking to the other doctors they good naturedly offered to bring in their practice board for Rob to try out for himself. We thought that would be fun for a laugh... and so went the banter for the afternoon. We really didn’t think the job was bad.

Scene 3: That evening her incision was still leaking a fair bit; the nurses during the day said it was fairly normal and likely just fluid from the swelling. (Although I don’t think any of them actually saw it at its worst.) If she was crying or laying down a constant trickle came out... but if she was screaming it actually spurted out. If she was sitting upright and happy then nothing showed up. Just as one of our night nurses came in she saw it at a bad time and alerted the doctors right away. The amount was too much to be normal and she was pretty sure that it was actual CSF (brain) fluid. After we cleaned her up and took a close look it was clear that it was coming from one little area near the top. They were going to bring in a doctor right away to add a couple of stitches just to help close it up.

Scene 4: And guess who walked through the door... Oh man, now he was really going to think we didn’t like him. Luckily Rob was off to the hockey game by this point and could not stick his foot in his mouth. So the doctor gave her a local anaesthetic (oww-needle in her head) and the nurse and I wrapped her up tight and pinned her down while he reinforced a few stitches. She hated being pinned down and squirmed like a leviathan. I thought I did pretty well... although I didn’t really watch too closely as he pulled the thread though her skin. Somehow it was not the little needle going through that I didn’t like it was the thread pulling that sent a shiver up my spine. If we thought it was not as pretty before it is definitely was not pretty now! Two different colours of thread used and the new stitches are smaller and closer together. BUT her head does not spurt CSF anymore so that all that really matters! I know, our daughter goes through brain surgery and we nit-pick the stitch job; really, our priorities are not that messed up- it was all in fun. I wonder if our doctor took the practice board home?

Scene 5: My mom cut out a joke from the newspaper. A guy standing over a cut open pumpkin saying something like “Relax, I’m just messing with your head.” So we give that to our doctors. They took it expecting some typical sentimental card.

Scene 6: Charlottes (primary) neurosurgeon came by after and thought she looked good enough to be discharged. Then he caught himself and told us to stay one more night, “what if she needed her head stitched up again?” he asked “I’m not sure if the doctors in Cranbrook who would be really comfortable with that job,” he explained. I said “Oh, I watched last night, I’m sure I could do it if I had to.” I’m not too sure what he thinks of us now, first Rob says his partners stitching job wasn’t good enough and then I said it didn’t look to hard and that I could do it.

We will see how it unfolds tomorrow...

October27th Wednesday: Posting from ICU waiting room

2010-10-27T15:56:00.000-07:00

Just wanted to let everyone know that Charlotte had surgery today at 1:30. Her nurosurgeon said that she did well, and we are just waiting to see her now... another 10 min or so. They opened a much smaller area so healing should be a lot easier on her this time. He said that the tumour lookes like it may have changed a little, but since it was so small it was hard to tell. Im not sure what that will mean for her. We will have to wait for news to come back from pathology in a couple of days.... more waiting I guess.

................................................

Charlotte is out and doing well, she went into this surgery in a much better state than she did the first one so things do not seem quite as crazy. By 7:00 she was already telling us what she wanted, mostly water and for the nurses to leave her sight. We read a couple of her favourite books, she was rubbing her left hand over the textured-touchy pages, a little akward since its all boarded up for her IV line. Poor thing has two extra IV lines in, one in her left hand (her dominent hand now) and one in her foot. We were not impressed to see this since she has a central line with two accesses as to avoid all the extra pokes. Plus there were poke marks on her right had as though they tried to put a line in there but could not hit a vein. But I guess thats a small deal for someone who went through brain surgery.

By the time I left them tonight her eye was starting to swell... she will probably be quite puffy by tomorrow. Last time it was too horrific to take a picture of her for the first couple of days, it was not something that I wanted to remember... but I do remember clearly. I hope since the incision was smaller she will not look as bad. Rob is staying tonight, he said the first night of sleep was my birthday gift! Oh goody, just what I always wanted... although under these circomstances its a pretty good gift. It was pretty crappy that my baby needed brain surgery on my birthday. But it would have been crappy on any other day anyways!

Well I'm off to cash in on my gift of sleep.

Thank you all for standing with us during this time.

October 12th Tuesday: Meetings with doctors and Call for prayer

2010-10-25T10:12:00.000-07:00

Charlotte’s line removal surgery was originally booked for Tuesday so it was a difficult trip up to Calgary knowing that was not the reason we were going for. We had a meeting with her Oncologist and her Neurosurgeon and a LP (spinal tap.)

Jumping to the end of the story her LP came back clear, a very huge relief. That basically meant that no cancer showed up that could have been hiding in her spine.

Charlotte had the LP done first but that takes a couple of days to get results back so we didn’t hear that news until after our “big meeting.” During our meeting we covered a few possibilities of what the future could look like. Immediately the first line of action is surgery to remove the mass in her brain, they wanted it no less than two weeks away. Surgery is now booked for around 12:30 on October 27th (my birthday.) The surgery is expected to take about 2 hours, much shorter than her original surgery because the mass is only 1.5cm big. Our doctor expects her to heal up a bit quicker than last time too; he said she should be up and about within 4 days. They will likely use the same opening to go in, something to do with not having to cut the membrane around her brain again. The expected side effect from this would be that it could make her right side weaker (less coordinated)- we can see that her right hand is already weaker from our initial go around. Since she is already naturally compensating for this our doctors said that this is a small “cost” and it would not likely slow her down much more. Our doctors talk of side effects from treatments as the “cost.” Then after she has healed a bit where would we go from there?

The first thing we discussed was what if the LP came back with something positive. Not something I ever want to dwell on again. With our doctors we would have had to make the choice to give Charlotte full cranial and spinal radiation (which would have a high cost leaving her physically and mentally handicapped-with no guarantees of a cure) or let her be after surgery and let her enjoy life for as long as she could. This took us down a dark and bleak road that I would not wish anyone to travel upon.

Our next conversations hinged on the LP coming back clear. After surgery the mass from her head would be sent to pathology, if it is confirmed to be the same tumour (which our doctors highly suspect based on the shape of it) then we would meet with a radiologist. The options and side effects vary but basically she would be given some form of a concentrated focal radiation. I don’t know anything about how radiation works but it sounds like they could target either the entire hole left by the original tumour or they could target just the spot where this new mass has shown up. Targeting just the smaller area sounds like it would not leave her with as much permanent damage but it might still allow the tumour to come back in a different area. From the beginning we were told that they never want to do radiation on someone younger than three because there is so much developing going on still. With any of these options of radiation there will be unknown costs because she is so young. Our Oncologist is speculating that with focal radiation she would still be able to be mostly independent in life. She told us that Charlotte would likely be slower than she would have been, might require an aid in school for example. Because we would be targeting an important area in her brain for movement it could impact her use of her right side, her coordination and maybe growth. I don’t know what that would do to her speech either. She is already quite behind where Yolanda was at the same age, I don’t know if that’s from the tumour or from her big sister talking all the time that she has never had to! Anyway our Doctors gave us all this as a really rough picture, we would learn more from the Radiologist if the time comes.

Her Neurosurgeon told us that the morning of her surgery they will do another MRI to guide them. He has had this MRI come back clear before and has cancelled surgery ten minutes before the planned time. This is what we are praying for. A miracle.

So what now? Well we have had a nice, quiet but busy two weeks at home. We spent some time out in the yard cleaning things up and getting ready for winter. Rob has been busy and hauled in trailer loads of firewood. I did some sewing and organizing in the girls rooms, went through their clothes... a never ending battle with little kids that grow like weeds. Unfortunately as Charlotte’s legs grow longer her waist keeps growing smaller, a very awkward size to find pants that fit. We have had lots of fun with family and friends and tried to make the best of our time at home.

Our church will be having a day of fasting and prayer for Charlotte on October 26th. If you are in Cranbrook and would like to participate the First Baptist Church (on 14th Ave) will be open for people to gather during these times: 12-1pm, 4-5pm, 7-8pm. If you are not able to come by we would still love if you participated in your own way, fasting for the day or just a meal, while fixing your attention and prayer on Charlottes healing.

Thank you all for your continued support,

Love Allison

October 5th Tuesday: MRI Trip to Calgary

2010-10-18T10:46:00.000-07:00

Charlotte needed to be at the hospital 9:00am on Thursday so we thought rather than getting on the road at 5am she should go up the day before. Since that would have cut out two of the pre-wedding parties I was helping organize Rob offered to go up without me. We didn’t anticipate there being any trouble, we have done several MRIs and hearing tests in the past and it wasn’t a big deal. Robs sister offered to go up with them to help out on the road, that way they could take Yolanda off my hands as well.

Our bachelorette party on Wednesday night turned out great. Since the bride’s family claims that Black Bart the pirate is somewhere back in their family tree I thought it would be fun to have a silly pirate kind of theme. With an assortment of dollar and thrift store shopping we pulled off the look quite nicely. Thursday was the bridal shower and I did some running around town that morning to get ready.

I was anxious to hear how things had gone up in Calgary and left a couple of messages on Rob’s cell. Finally, about an hour before I was to be helping set up for the shower he called back. Just the falter in his voice made me sink to the floor. Things had not gone as well as we had hoped. Her hearing test was good, but the MRI was not. Everything came crashing down –again. Not wanting to spoil the party I called in sick, and let the other bridesmaid believe I had the flu. I called my mom and sister who came over and cried with me while we waited until Rob got home with the girls. My friend Tammy let Abbey know after the shower about what was going on so they came over for a bit too. I figured that I could not keep this a secret for the whole weekend and it would be terrible to have it slip at the wrong time, better to all cry it out now together.

The MRI showed something had formed over the past three months. It was about 1 to 1.5 cm big and right on the side of her original tumour. From the shape of it our Doctor is speculating that it is the same tumour coming back. We were so shocked to hear this. Charlotte had been so strong and done so well with her chemo treatments. We were told in the beginning that this was an aggressive tumour. Somehow we just figured that since she was doing so well outwardly that things must be working on the inside as well. I really was convinced that there was no way it would come back during the chemo; I was not worried for this MRI at all. It was the next one that I was concerned about- I thought that with three months off the chemo if the tumour rears its head again that would have been the scan to look for. But no, once again we were caught off guard and knocked to the ground.

The rest of the week was imaginably very hard on all of us. We were able to suppress everything for a day and truly enjoy the wedding. We got some cute family pictures in with everyone all dressed up. I got through my speech without crying and even got a few laughs. It was a beautiful day. For the rest of the weekend we stuck pretty close to home and I started to repack for our next journey up to Calgary on Tuesday. Although her line removal surgery was cancelled we now had a meeting with our (Oncology) Doctor and Charlotte’s neurosurgeon to see what we could be looking at for the next few months.

September 29th Wednesday: Gearing up for a busy week.

2010-10-18T10:12:00.001-07:00

We didn’t waste any time after being discharged, had our room packed and cleaned, and were on the road by the next morning. We had a lot on our minds about the coming week. Charlottes MRI and hearing test were scheduled for Thursday Oct 7th and then her central line removal was booked for Tuesday October 12th. We finally had a day to look forwards to. This could be our day for a little closure on all this. Even after we were sent home it just didn’t feel like we were done and we were hoping that taking out her line would signal that: no more line care, flushing it or dressing changes, she could freely bath again, no more safety kit in the diaper bag, we would not be so cautious picking her up- nothing to snag on!
We were a bit disappointed that they could not have scheduled everything during the same trip up but we were excited to have it done so it didn’t really matter. In the midst of all this I was to be in my friend Abbey’s wedding on October 9th. So my mind was on showers and bachelorette parties with snacks to make, costumes to put together, gifts to wrap, cards to write, a speech to write-and rehearse, rehearsals for the wedding, hair to do, and more friends coming to town to visit with. It was going to be a wonderful diversion and something different to concentrate on.