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

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

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.

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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

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

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.

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.

September 20th Monday: A clinic visit that lasted a week!

We had a clinic appointment at 9:00am and were put in the isolation room because of her cough. (She has had a chronic cough since the last round of drugs so we were not usually concerned about it. Today they decided it sounded a bit worse.) After her blood work came back they decided to give her both blood and platelets, so we waited while that was ordered and brought in. She also needed a new inseflon poked in her arm- for the G-CSF drugs that we give her- that needs changed every 5 days, so that was done in the meantime. During her blood transfusion she spiked a little fever, which is fairly normal and usually goes away. We had so much going on that they closed the clinic around us and we got temporarily transferred into the main unit. Blood finally finished up around 7:30 but her fever was still climbing, by the time it reached 39.1 the Doctor on call officially admitted us. We were set up in an actual room and they started her on two different antibiotics.
Her fever stayed high for 4 more days, getting as high as 40.3-even with using Tylenol regularly. Her neck glands swelled up so much that at one point our doctors were convinced she had mumps. She didn’t eat much and her cough got so bad that it broke blood vessels in her eye. Her eye looked pretty scary, and when she saw it in the mirror she cried and held her hand up to block herself from seeing it. It really stressed her out, poor little girl.
They took X-rays three different times; she ended up with pneumonia so they were keeping an eye on her lungs. Once the mumps were ruled out by blood tests and a flu virus tested positive her antibiotics were changed around and she started improving.
What a stressful week that was, we were happy to be discharged on the 28th and told we could head home. (Home, home.) Yahoo! Yahoo!

Getting a hair cut... we was not too enthusiastic!