Saturday, December 11, 2010

Just a few cute picutres...

I found some fun picutres we took last month that haven't made it onto the blog yet.
Playing dress up in Yolandas room.

Friday, December 10, 2010

December 10th Friday: No Cancer today!

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

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
Big Mushrooms- especially maitake and shiitake
Berries and pomegranate
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
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
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

Sweet Potatoes

Foods that should be Organic

Any Meat and Milk Products
Red/Green Peppers

Sunday, November 28, 2010

November 25th Thursday: News from our Doctors!

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!

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.

Wednesday, November 03, 2010

November 3rd Wednesday: An update without facts?

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!

Saturday, October 30, 2010

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...

Wednesday, October 27, 2010

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.


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.

Monday, October 25, 2010

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

Monday, October 18, 2010

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.

Friday, October 15, 2010

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!

Wednesday, September 22, 2010

September 15th Wednesday: Discharged (to RMcD House for now)

I don’t feel like this past round went particularly smooth, we had a couple of bumps that could have been avoided. Charlottes stem cells have been given to her around 2:00 the past two times, so when the nurse came in with her pre-meds at 9:00 am we were surprised at how early we were getting started. (Usually we give her Benadryl and steroids at about 1:00 to help her through the transfusion.) When Rob asked our nurse she told us sometimes they do them at 10:00 and that Charlotte was in the computer for the drugs now. A comment that our nurse had made the night before then made sense, she said to get a good sleep because it would be a busy morning- at the time we thought that we would not really have a busy morning but maybe she just meant our usual busyness. Ok dokey, it added up so we gave her the pre-meds. About an hour later our nurse came in looking sheepish and said that her stem cells were not arriving until 2:00-it was in the computer wrong and no one had noticed. So Charlotte had her usual 4 hour Benadryl nap... while the doctors came in and debated about what to do. Both the Benadryl and the Steroid had a 4 to 6 hour effect; Charlotte actually would need them at hour 5. So we debated if she would be protected enough, what about the side effects if her dose was repeated early? In the end we only gave her the Benadryl again... so she slept most of the day... and not much during the night.

It was Robs turn to sleep at the hospital that night, we had worked that out in the beginning since the smell of the stem cells makes me nauseous and that would be the worst smelling night. We knew that daddy was in for rough night... but we had no idea. She actually slept not too badly until about 1am when Rob woke up to her making a funny sound. Luckily he got up checked on her. She was soaked in blood, her blanket and crib pad were all soaked. One of her lines had somehow come undone. I came in the morning to find a very pale Charlotte sitting with her very shaky, nauseous Daddy. She had lost a lot of blood; Rob had to wring it out of her clothes. Our big concern was if she would have lost the stem cells that had been transfused earlier. So our nurses were consulting the doctors who where consulting the stem cell team.... we had a lot of people in to take a look at her reassure us that her cells should have all been absorbed by that point. We all felt a little shaky that whole day but by bed time Charlotte had a couple of meals in and was looking much better.

I’m not sure if I have mentioned this before but her stem cells are needed for her body to recover itself from the chemo drugs. No one has actually told us what would happen in Charlotte’s case if she were not to get her stem cells back, but we have the impression that it would take many months for her to recover herself... and some kids would not recover. Hence our stress over Charlotte loosing so much blood that night! By the end of the week her blood counts were back up to where they were expected to be so she was back on track.

Potentially our last hospital stay... Walking down the corridor on our way out after Charlottes discharge made me confront some mixed up thoughts and emotions. Excitement. Relief. That could possibly be the last time we sleep there! Nervousness. Anticipation. But really the worst of this round is yet to come; her dragony days are still ahead of us. Anxiety. Charlotte could still very easily get sick or have a fever, granting us another stay. Fear. This is also the last round so it will likely hit her the hardest, although she has come through the rounds relatively unscathed... trying not to get our hopes up! Hope. How can I not let my hopes “get up?” Confusion. Can I let myself look forward to something even though it might not be there when we expect it? Is that just asking for disappointment? Only time will tell if her cancer was cured, but maybe-hopefully this protocol is all we will ever need to go through. Guilt. So many new friends that we were leaving behind us, all still in the midst of cancer and chemo drugs, it’s just not fair. Nothing about that is fair. Pride. My little girl has shown such strength though everything that we have put her through. Appreciation. Our friends and families have held us up, shown so much love and blessed us in so many ways.

Charlotte helping out with checking her blood pressure.

Some of our favourite nurses, we were so happy that they all ended up working on our last day.

One of Charlottes new friends, we will get to play with her at RMcD house too.

A quick nap before we head over to RMcD House.

All we can really count on is the stuff that’s already behind us I guess. She has finished this last set of drugs. And that is exciting. But what will the near future hold? I guess we are still forced to take this journey one day at a time.

No Kisses!

Just goofing around with her daddy. To get Charlotte to give kisses we have to play a little reverse psychology... "Noooo, no kisses, no kisses, dont even think about it!" and then "Ewww kisses!" Here are a couple of cute picutres of her going in for some kisses. You can almost see the twinkle in her eye.
Little cardboard puke trays... if you are not busy throwing up in them they are great for holding crayons, or good for hats, or shoes in a pinch too!

September 11th Saturday: Last day of drugs

Here we are starting her last round of drugs for this protocol. Yahoo! So we are still doing the baths every six hours around the clock for another day... but then we will be done with that too!

Things are finishing up; we are seeing an end in sight. It’s hard not knowing when the end actually is.... will we ever feel like it’s over? We do not have a definite single day or event that we are working towards, it’s hard to not have a goal. The drugs are done though.

The next little while will hopefully go as smoothly as the last rounds did. We will wait for her to recover from the chemo, once this “round” is over we will go back for an MRI and if that shows nothing they will schedule a surgery for her central line removal. That could take a day or a month to get her in judging by the mixed messages we have heard. Once her line is out that will be a big relief that that part of our journey is over. We will be able to play without caution and concern, baths will not be such a procedure, and swimming will be an option.

MMmmm, warm blankets to dry off with... It will be hard to go back to plain ol' towels!

Monday, September 20, 2010

Sept 9th Time at Home and Starting Round 6

Well our time at home went way too fast. I spent most of the time unpacking, and by the time everything was finally unpacked it was time to start packing to head back up to Calgary. All those 12 Rubbermaid tubs that we hurriedly packed up got stuffed into the laundry room so it was out of sight. That left a very cramped spot to try and sort things out. It was going ok until I went to do some laundry and found the dryer was broken. Then we had to unload all the tubs into the bathroom to get out the dryer to take it to see about a repair. Alas a 15-20 year old dryer is not worth fixing up... so we went on the hunt for a new dryer. Just what we wanted to do on our visit home! Oh well we found a deal on a second hand set that was only a year old so hopefully there will be no problems with them anytime soon! Then I had to rip my laundry room right apart to get the new unit in. Sigh, next time we are home though the laundry is going to almost wash itself!

The weather was not particularly nice so that made it a bit easier on us since Charlotte could not be in sunlight. We took her and Yolanda out to see Great Grandma Slee. We all enjoyed lunch and a “tea party” as Yolanda calls it, at my Aunt and Uncles, in honour of Grandmas 91st birthday. I was disappointed that I had forgotten to take my camera along.

We were back up to Calgary on the 9th. Charlotte had an audiology test in the morning, which showed slightly more loss in the high range hearing. We are still in a good range we were told and she is still a ways off from needing a hearing aid. Things are looking hopeful that she might win that battle. After that we had blood counts taken in Clinic. Her counts were just borderline ready to start the next round of chemo, so she was admitted to get things started. A night of prehydration... to get her little system flowing so that the drugs are flushed out as fast as possible. As if that makes any sense.
Two days of drugs... and the 6 hour baths started again too. The drugs went in fairly uneventfully so that was good.