December 9th Friday: Some good days again!

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

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

Also pertaining to that last post, and way more important than the shirt thing, she pooped. Hooray! Thank you to everyone who responded with ideas of things to try, I received suggestions from 6 different people! I’m not sure how much detail everyone really wants to know about this sort of thing but let’s just say that after 14 days of no movements we were WAY past using psyllium husks. Let me assure you that Charlotte is on heavy dose of a lactulose every day. We started using suppositories daily, and when those didn’t work we stepped it up to micro enemas, when those didn’t work we were forced to pull out the big ones.  I will spare you of the more colourful version of that saga and just say that once things finally started moving everything seemed to get a little more under control.  It was a very tense couple of days, poor little 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, and sleeping all day. Her doctors here had been in contact with the palliative care team up in Calgary and they said that she likely only had a few days left. I mentioned 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 gotten stronger! She is eating more and up and playing most of the day. She has the occasional nap, maybe every other day- we try to encourage it but some days it’s a fight, she is feeling too good to sleep! We have been able to sneak her steroids back down a little this week; it is still a bigger dose than it was three weeks ago. She is doing so well. She has really amazed us all. I’m not sure what the future has in store for us, we are still taking this journey one day at a time. But we are praying that we will see improvements each day and she will get stronger.

We have been so blessed that Charlotte and our family has such wonderful care. We live in a very generous community and feel very well taken care of. Charlotte has two amazing paediatricians here that are working with her care team up in Calgary. Two weeks ago they had been stopping by our house 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 a week 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 is busy vacuuming or cleaning up in my kitchen! It’s especially nice to have someone else be the bad guy when its suppository or enema time! Although Charlotte thinks that our pastor comes over just to make her pause her movie, we really appreciate that he has been coming by daily to encourage and pray with us all. Many wonderful meals are being dropped off throughout the week, this eases up the grocery shopping, meal planning and preparation time allowing us more snuggle and play time. The girls are also receiving some wonderful little pick-me-ups in the mail, cards, letters and especially stickers are something to look forwards to in the mornings.

I love reading your comments, emails and fb messages. I realize that it’s awkward when you don’t know what to say, and that’s ok- most of the time I don’t know what to say either.  Old acquaintances 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’s been pretty good, an improvement or something... But if you have not heard any of that where do I start? Telling you ’I’m good’ is not very accurate! I size you up and think how much do you really want to know?... I’m sure I don’t get it right as often as I would like. Some people want more when I answer that things are ‘pretty good this week’ they say “really” with raised eyebrows and look like they are waiting for me to tell them the truth. But the answer that I give is sometimes all I can give; otherwise they might have to deal with an emotional Chernobyl.  So let me say that it’s REALLY ok if all you write is that you are thinking of us or keeping us in your prayers... it’s just really nice to hear that we have so much support.

We got our Christmas tree up and decorated and the girls have already gotten fully spoiled! Thank you to Alexander’s Quest for an exciting array of craft supplies, books and toys and the fun playmobil toys the 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

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...

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

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

 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

This was a hard post to write, and probably not one you want to sneak a quick read of while you are sitting in the office. I have blasted through the previous blog postings just to get them all up in order.  We had a beautiful summer; Charlotte’s health held up and time flew way to fast. But now things are starting to change for her and I feel like although some changes have been gradual they are starting to add up. We are seeing these things one day at a time, putting them all up here all at once is quite overwhelming. I wanted to get an update posted to share with you about how she is currently doing.
In July I posted that we were getting a couple of nurses in to bond with and get to know Charlotte while she is feeling well. That way should a time come when we need more help and care there would be someone familiar 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 “Play Nurse,” because as Yolanda puts it, “She only has to check on Charlotte a little bit, then she just gets to play!” She is a blessing and not only plays but 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 have not had any recurrences. We thank God for answered prayer; those were a very stressful few days. We wondered if we were making the right decision about removing her central line, in hindsight I’m glad that we went through with the procedure.

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

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

In the beginning of October we noticed a small bump on the back 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 think about this; although cancer is always in our mind- tumours should not cross through the skull. It does not seem to hurt her; she does not really like too much pressure on it but is able to lie normally. I guess it is not really important, just gives us something else to wonder and worry about.

Charlotte’s energy over the summer was great, fairly consistent at least. She would get tired and have an occasional “down” day after a busy one.  Into September and October we have had an increasing number of “down” days. On these days she is too tired to do much more than snuggle up on the couch and watch us buzz around her, she doesn’t really want to eat or be too involved with anything. We struggle to get food and fluids into her; every calorie that we get into her probably causes 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 duties is to ensure that our children get proper nutrition, it is hard to accept the idea that this might not be doing her a favour much longer. Her doctor explained that these little ones can get depressed too, she is likely just sick of being sick. Our hearts continue to cry out for Charlotte, we pray for her complete 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 apart but she still has a couple each week. On these days she usually wakes up in good 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 or her dolls. She doesn’t really ask for much food again until the afternoon but she will constantly pick at something if it is available (and of course it is.) Favourite foods right now are toast squares, strawberries, grapes, cubes of cream 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 our games involve her being a kitty, and Yolanda is always a dragon... somehow they make it work. On these days she has silly moments; she gets cheeky and waves her little fist at us if we are causing trouble.

 

At the beginning of October Charlotte developed a little cough, no other symptoms, just a cough. It stayed low key until Monday the 10^th when 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-ray showed that she had infection in the top of her left lung. Pneumonia. We were lucky to have caught it fairly early, and got started with a second antibiotic. Unfortunately this antibiotic made her extremely nauseous and she vomited frequently (like nearly every time we gave her a dose which was four times a day.) So for two weeks we experimented with dose size trying to get in as much as we could without making her sick. This made her not hungry at all. We resorted to setting the timer at 20 min intervals and alternating giving her a minuscule dose of antibiotic or a syringe of blended fruit and veggies...all day long. It was fairly exhausting. But we made it through! We are extremely grateful for our friend Bev who has been organizing dinners to be dropped off each week for us, especially during all of that! The dinners have been wonderful; it is great to not have to worry about getting something healthy on the table on top of taking care of Charlotte.  Thank you to everyone who has been helping out with that, it is a big burden off our shoulders.

Two weeks of being sick and not eating has taken a toll on Charlotte. Her leg and foot muscles have tensed up and she can no longer bear any weight on her feet. I’m not sure how to explain, the tenseness is from her brain telling her foot that it is tense, not the actual muscles. On her good days 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. This has taken a little adjusting for all of us since she is not happy to be left behind in a room for even a moment.

We take things one day at a time and try not to think too far ahead right now.  We appreciate being in your thoughts and prayers and all the kind words sent our way. Please continue praying; for guidance, peace, comfort, protection and above all undeniable healing for Charlotte.

September 6th Tuesday: Yolandas first day of school

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

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

We decided at 10:30 Tuesday night that it was a good time to take 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 Kelowna and a generous friend who let us stay with her so we didn’t ACTUALLY have to camp (but we could still get in on all the fun!) So with a flashlight I snuck into the girl’s rooms to pack their clothes. We were on the road the next morning before 7:00. We had one unfortunate little stop to clean up a puking redhead but she felt better and we made 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.