Wednesday, March 30, 2011

March 23rd Wednesday:Squeezing in a party

Yolanda has been planning on having a Fancy Nancy birthday party for a couple of months now, she will be five on April 1. (EEEK, when did that happen?) Everything was becoming birthday focused, each day as she got dressed she would point out what she planned to wear for her party. For those who don't know Fancy Nancy she is a little girl who will stop at nothing to make everything look fancy.
 I had started to collect a few things planning for a fancy birthday party awhile ago but since we were renovating at the same time everything was stored in a bin out in the garage and we couldn't find it.

Yolanda's cousin Trinity surprised us with a visit so I thought it was a good time to have a little party. That night as I was falling asleep I made a mental list of some things that I needed to pick up for the party. Rob was also going full blast on the renos and had a friend and my dad lined up to help... so I had little bigger lunch planned for them. That days renos consisted of hauling old wood chips out of the attic to get ready to put new insulation in... an extremely gross and dusty job. (It also made my house extremely gross and dusty since the bags had to be hauled downstairs through the house.)
Then at about 2am Charlotte started the whole not breathing thing... for the rest of those details read Fridays post. Anyways Rob took to her to the hospital emergency with the instructions for me to call his helpers in the morning to put the work on hold. I got back to sleep sometime after 3am, after the nurse called to give me an update on Charlotte.
That morning I was up early to give the hospital a call, and to call off Robs help. I had thought about telling Yolanda that we would have her party another day... but she woke up singing about how beautiful her party was going to be. She was spinning in circles singing "Its going to be my beautiful party, its going to be so fancy." UH OH! How could I cancel it now! All year so much has been about Charlotte, now she gets one little moment and I cancel it because of Charlotte, not fair at all! So I sucked it up and went ahead with it. Luckily my Mom stopped by and I delegated a trip to the dollar store for a couple of decorations. I was able to zip out to the grocery store once Rob and Charlotte got home because she needed milk for her cereal. I ran around the store picking up stuff for lunch and the party. Not having a cake planned I thought we would do Fancy Nancy style parfaits... three colours of ice cream, whipped cream, sprinkles, cherries and bananas. Kept it simple since there was just the three girls.
I was so glad Cheryl stopped by early to help out to... took the glamorous job of doing the lunch dishes off my plate. (I know, so punny.) The party was pretty short and sweet, perfect since we were exhausted, but it seemed to satisfy the need for an official party.

Yolanda was thrilled with her gifts, even the Rapunzel gift bag was a big hit.
Here is what was going on in the living room shortly after the party.
The renos were finished in time, at least the part that REALLY needed to be done. Thanks to everyone who helped out. The day we left for Calgary the guys were coming in to insulate... we left Robs sister in charge and have not been back since! Thanks to everyone who has been cleaning up our mess and taking care of us, we really appreciate it!

March 30th Wednesday: Feeling a little better

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



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

Saturday, March 26, 2011

Old Video: May 20, 2010.

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

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

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

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

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

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

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

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

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

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

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

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

Friday, March 25, 2011

March 24th Thursday: Emergency trip up to Calgary

Unfortunatly we are back in calgary.

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

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

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

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


Fianlly we are getting somewhere!
 
Riding in the jump seat, with her fraggle puppet to keep her company.

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

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

Love Allison

Wednesday, March 09, 2011

March 9th Wednesday: We made it home!

 


Yolanda came for the last day of radiation, her she is with one of our nurses.
 Just a little note to say that we are home and finished up radiation.

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

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


Last treatment.

Charlottes radiation tech ladies.

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

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

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

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

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

Blood Donations Needed

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

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


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

Click on the chart to make it a bit bigger.
 Yikes, Charlotte had had three brain surgeries and nearly a year of cancer treatments! 

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


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

One blood donation could save three lives.

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

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

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

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

Between our 41 permanent locations in major cities across the country, and the hundreds of mobile clinics we operate, there are over 20,000 blood donor clinics per year. Chances are there is a blood donor clinic somewhere near where you live, work or play. To find one near you, use our handy Clinic Locator, or call us at 1 888 2 DONATE.
 
Please please please... for all of our new friends at the hospital... donate if you can. If you are not able to donate there are other ways to help, check out the website, and help spread the word.

February 25th: Flames Game




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