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.