Christmas at home!

Well we lucked out and got to spend christmas at home! On christmas eve Kade started to get a little warm, and we atarted to think Santa was going to have to try to find him in the hospital. His temperature went back down though and we got through the evening dinner at Grandma and Grandpa's house fine!
Kade woke up extremely excited, like any 5 year old, on christmas day! He called to us to unhook him from his feed pump so he could go downstairs and see if Santa came. He literally squealed with joy when he saw what Santa had brought him. We opened our presents together, minus Sebastian and Kieron (they spent christmas at their moms house), we then had a lazy day and did nothing! No christmas dinner (we had left overs from grandmas), no company, no stress! We wanted to keep to ourselves to get some rest and to keep Kade away from crowds, the last thing he needs is to pick up a bug! Anyway our lazy christmas was awesome... very relaxing...finally we all got some sleep.
We got an early present last week, when Ayzac got to go home last friday! We all were happy, and very nervous. Poor Krystal has to give the little man a pharmacy of drugs daily and do all the things the doctors and nurses were doing by herself! If anyone can do it though it's Krystal...what an amazing woman... what an amazing mom! I was writing a post on this blog about it, and got about 500 words in when I hit a wrong button and deleted it all. I got so frustrated I didn't bother rewriting it! If any of you want to go to Ayzacs blog it's at angelsforayzac.blogspot.com! Krystal has done a great job with the blog...what an amazing story of courage, strength, pain, fear, and an unbelievable will to live! Please check it out!

Kade has now finished his radiation therapy and now we have to wait a month for his next evaluation to find out if it worked! In the meantime he is still getting chemo, and he is scheduled for another 6 day hospital stay on december 30th. Kade feels better now, it doesn't hurt quite as much when he goes pooh! His little bum is still red and sore. He now has a large radiation burn showing on his lower abdomen. The skin is swollen and red, and starting to blister. We have a prescription or two for the creams we are putting on the front and back of our little hero!
All in all, he is feeling much better and his spirits are high as usual. His appetite sucks right now and it's hard to get him to eat. He is getting bolus feeds during the day, and night feeds with his pump overnight. He eats occasionally here and there but nothing very substantial. He will have his NG tube in for the duration of treatment I'm affraid. He hasn't lost much weight though, not like the beginning! So we forge on in this battle, with hope in our hearts and determination. The cost is high, but we will beat this horrible disease...knock on wood!

Treatment Sucks!

So another long stay for the Boo Man in the hospital. We're still waiting for the blood culture results even though I'm sure they are negative. Kades counts are coming up well thanks to the GCSF, but all this chemo and radiation is taking it's toll on the little superman. They have to iradiate him right up his little back door, so now he is burned there! Imagine trying to go pooh with a wicked sunburn up your ass! Needless to say the diarhea he has now is possibly one of the worst tortures on earth for my little hero. They are giving him morphine for the pain, but it's not helping much. The chemo is kicking the shit out of his counts so he is prone to getting sick! We are now at the point of hating the treatments...or at least how they make him feel. This is where we are reminded of the reality of the situation again, not that we need to be reminded! We are officially at the hard part...I hope. With a little luck we will be able to be home for christmas, which will be a quiet one...no big parties for us this year.
As of right now Kade has only 9 radiation treatments left, which will take 2 weeks. His next evaluation is one month after that. All I can say is that it better be worth it...fuck you cancer!
Some good news is one the horizon though...Ayzac may get to go home soon...hopefully end of the week! Krystal and Ayzac have been here far, far, far to long. Three months is too long to live in a hospital, even one as wonderful as this. Our fingers are crossed, and with luck this will be it...time to go home!

A minor set back.

Well we are back at the hospital for an unscheduled stay. Kade got a fever last night and we had to come in. They have to do blood cultures to find out what bug he caught, even though we know it's most likely a cold. He has a runny nose and a cough, so they put him on antibiotics to be on the safe side. They really can't do much for a virus (like a cold), but the concern is that it may be masking something more serious. Viruses aren't usually that bad, but bacterial infection can be deadly! Thus the blood cultures that take two days to get results! Now to be honest, this is all based on my understanding and I could be miss informed...I hope viruses aren't that bad!! The real problem is that Kades blood counts have dropped to the ground, he literally has almost no immune system! He has no white blood cells, and no neutriphils, his hemoglobin has dropped, and his platelets are falling! So about 10 minutes ago the nurse started his blood transfusion. This is only for his hemoglobin. He has to produce his own white blood cells, which he does with the helpof a drug called GCSF (which stands for something extremely medical and latin sounding)! GCSF is a chemical that your body produces, that tells the stem cells in your bone marrow that your white blood cells have died off and to make more! The GCSF injections that Kade gets is a synthetic form of the chemical your body makes naturally, but it is more potent! I am also extremely grateful for our drug plans, because this drug costs about $1000.00 a month (roughly $175.00 a 4ml shot!) His platelets are still in the tolerable range for someone with cancer getting chemo, but well below the average healthy person.
They will do a platelet transfusion if he needs one. For those of you who don't know what I'm talking about, here's what I'm talking about: Hemoglobin is basically red blood cells, these carry oxygen to all the cells of your body. White blood cells are your immune system. There are five major kinds of white cells...the most important ones are called neutriphils. These physically fight bacterial infection, and kill off foreign invading disease! Next are Platelets. Platelets allow for clotting, and with low platelet counts you can bleed uncontrolably!
When Kade has blood work done, they do a CBC (Complete Blood Count). This gives us a count of about ten different things in Kades blood. There are literally thousands of things in our blood that they do tests for, not the simple red liquid I originally thought it was! When we get the CBC count we look for four things...WBC (white blood cell count), ANC (absolute neutriphil count), Hemoglobin, and Platelets. To give you an idea, Kades most recent counts were: WBC 0.3 (normal range is between 5-15 x 10 to the ninth per litre), hemoglobin 90 (normal range is 107-147), and platelets were 56 (normal range is 180-440 x 10 to the ninth per litre)! We didn't get a neutriphil count on paper because they were zero!
The bottom line is that Kade is at a high risk of getting sick right now, and his body cannoit fight the cold he has. He also has to stay away from everyone in case he picks up any bugs! That means he has to stay in the hospital until his counts go back up. He also can't get any chemo treatments until his counts go back up. He can still get radiation as long as his hemoglobin is over 100, and I'm watching him get a bag of blood right now! This is the part of the roller coaster ride that is going down the steep hill...we should start climbing again soon!
Until next time...

...And The Battle Raged On!

Today is December 4th, and as of yesterday Kade is half way through his radiotherapy! He goes 5 days a week, for 28 days of treatments...yesterday was day 14. He is tolerating the treatments well. The worst part is that he has to be sedated every time. It is obviously extremely important that Kade stays absolutely still and is in exactly the same position every time he gets "nuked"! Therefore he has an anesthetist from childrens hospital come to the B.C. Cancer agency everyday to put him to sleep (no not like at the vet, jeez people). The anesthetist then waits for Kade to get his treatment, which takes about 2 minutes, and then they wake him up and make sure he is okay so they can head back to childrens! In order for Kade to be in exactly the same position every time, they made a mould of his little body lying on his back. It was wierd...it was like a big plastic bag of sand that they had him lie down on, then they injected a liquid into it. It then hardened like concrete, and was a perfect fit! So they knock him out and lie him down on the Kade mould, throw him in the microwave on high for 2 minutes...let stand for about an hour and a half (so he has a chance to fully wake up) and presto your kid is now cooked and ready to serve!
Since the anesthetist has to come from BCCH to the cancer agency, they booked all Kades appointments for first thing in the morning. That way the anesthetist can finish and be back at the hospital for surgeries and other appointments. Unfortunately Kade is not much of a morning person, so he isn't really happy about having to get up at 6:00 a.m.!
We also found out that when you get a general anesthetic, they are basically putting you into a coma. So when you wake up, your brain systems come back at different times. Your instinct and emotional centers wake up faster than your logic and reasoning centers of your brain. What this means is that if you wake up too fast, you can be scared and emotional and have trouble understanding what is going on! In other words, there have been a few times when Kade woke up he was extremely angry and there was no consoling him or reasoning with him. It's best when he sleeps longer. That way he gets the sleep he misses by getting up early and he sleeps off the anesthetic...and he wakes up in a good mood!
So far the radiation has had no adverse effects on the little fella, but that doesn't usually show up until closer to the end of the treatment. His last treatment is scheduled for Dec.23rd, and he also has chemo treatments at the same time. This means we will probably be spending christmas in childrens hospital! Oh well c'est la vie! At least we can look forward to more christmases together...we couldn't say that a few short months ago. Then again...knock on wood...we're not out the woods yet! Christmas is about spending time together and being grateful for each other anyway...so I can't think of a better way of making that point! Nothing means more than family...especially your chidren. So we fight on in this biological war! Go Kade...Go Ayzac...my heroes!

The Jury Has Deliberated!

Well we got some more news today. Poor Kade had a rough day. First we had to go to the Cancer Agency, so Kade could get a PET scan. This is so his Radiologist can start to plan and map his treatment. His Radio therapy will start Nov.8, and is scheduled to finish Dec.20...so we know what we are asking Santa for this year! They had to sedate him with a general anasthetic, so he would be still enough for the imaging...You try asking a 5 year old to stay still and not move a muscle for an hour! He woke up groggy and with a sore little mr. happy because they had to put a catheter in. Poor little man.
Right after that, we had to go back to BCCH for another chemo treatment. That was fairly quick though we were outa there in about 2 1/2 hours. About 2 minutes before we left Kades Oncologist popped in to tell us he had the results of Kades bone marrow biopsy from friday.
It's completely clear! I get a tear in my eye every time I say it...yay...it's clear!

The Jury Is In...Again!

Well Kade just had his second evaluation, and we got some good news...thankfully! The cancer has been shrinking everywhere. Some of the lymph nodes have gone back down to normal. Some of the leisions on his bones have disappeared. Most importantly his primary tumor has shrunk by about 30%. Kades primary Oncologist thinks that his bone marrow has cleared up as well, since his blood counts seem to recover fairly rapidly. Unfortunately he is not a candidate for surgery. If they tried to surgically remove his primary tumor, they would have to remove his bladder and it would probably ruin his one functional kidney. In other words it would most likely kill him. I learned that with this type of cancer (as well as others), when they surgically remove tumors they have to take a fair amount of healthy tissue around the tumor. this ensures that they get all the cancerous tissue and reduce the probability of a relapse. It's common sense really! Kades tumor is touching most of his organs in his abdomen. Rhabdomyosarcoma's are very penetrating cancers, and therefore can be difficult to completely remove surgically...depending of course on location! Kades tumor is in one of the worst spots it could be, for not being in his head!

The good news is that he can be treated with radiation, and they may be able to completely kill the cancer.This would possibly mean that they may not need to do surgery at all, and he would end up with scar tissue instead of a tumor. Now that's my understanding after talking to the Oncologist, so it may not be entirely accurate.

Kade will be starting his radio therapy soon. We still need to meet with his Radiologist to get all the details. You know the scary details, like how the radiation that your child with cancer will be getting, may cause cancer and/or make him sterile, or kill him! However it beats the alternative!

All in all, it was good news. We are getting closer, but we are a long way from being out of the woods! He is a tough little trooper and he is truly my hero!

On another note, our great nephew Ayzac has been in childrens hospital for about three weeks now. He has a mitocondrial metabolic disorder that a team of over 60 doctors are trying to figure out, and it could take them days to a year. Poor little Ayzac is only 10 weeks old, and he and his parents are going through hell. Our hearts and thoughts are with them, and with the rest of the family!

Well it's been a while, so here's what's going on. Kade is finishing his second cycle of his second round. Today is his second to last day in the hospital this time around. Got all those seconds? Next week he gets a break from chemo, even though he will be coming into the hospital for antibiotics and blood tests. We are in the hospital every week no matter what. After next week Kade will be starting the last cycle of the second round. Meaning he will be in the hospital for three days that week, then out for a week (with a single day trip for chemo), then back in for five days. After that he will almost get a week off. However that's when the next evaluation starts. This is the big one! This next evaluation determines whether or not Kade will be getting surgery, if his tumor has shrunk enough. This is a scary thought, since his surgery is very complicated and dangerous. Not to mention that after surgery he will be getting radiation therapy. Cancer is an awful disease, especially for children. To treat this disease you have to do everything you're supposed to stay away from! You have to poison the child, then you have to cut them open, then you expose them to radiation...all of which can kill them! I hate this disease with a passion.
I've had the opportunity to speak with other parents whose children are being treated for cancer as well! The most common cancer in children seems to be Leukemia, with all different types of catagories. Just hearing what other kids are going through breaks your heart. One young girl we met had lost her leg and nutrition was an issue. She was having trouble keeping anything down due to her chemo. Another girl was in the hospital frequently with fever and infections because her immune system is so low with her treatment. Alot of kids end up being in isolation. This is usually the kids that get bone marrow transplants, because they have no immune system until their new marrow starts making white blood cells and Neutriphils (the soldiers in your blood that do the physical fighting of infection!) The good news is that they've done so many studies on childrens cancers that they have a huge knowledge base and have a wide variety of treatments. Most children survive and thrive. We have our fingers crossed for our little boy, we are lucky he is so strong! There will be some difficult times ahead. When he has his surgery they will have to remove his prostate gland, which means that he will be sterile. Now obviously saving his life is the most important thing, but this will have long reaching effects into his life!
If I have any advice for parents it would be this, if something seems not quite right with your child don't wait, get them checked out right away. If the doctors say nothing is wrong but you feel differently, be persistant. If we had waited any longer we would have lost our beautiful little boy, and the fact is that we are not out of the woods yet. Don't get me wrong, we are going to beat this..but the risks are still there. Anyway, keeping strong, and until next we post!

With Arms Raised, The Roller Coaster We Ride!

Ahhh, where to begin? Well for starters Kade gave us a scare a few days ago when his temperature went up to just below fever, then came back down. When we went back to the hospital for bloodwork a couple of days later we found out that his white blood cell count was virtually nonexistent...yikes. We have been giving him injections to boost his white blood cell count as part of his treatment, so this is all par for the course! The drug we have to give him needs to be refridgerated. So imagine our horror, when after we filled his prescription, we discovered we had left it in the car all day in the heat! Back we go to the hospital on the Sunday of the long weekend to get more life saving drugs for our baby! The parent of the year award goes to...!
Now we are back in the hospital getting chemo for the third week of round one! So far so good, this chemo is scary stuff though...lots of risks. However the alternative isn't very appealing!
We will have lots of hospital stays with this cycle of treatment, and hopefully Kade will avoid any infections while his counts are low. With a little luck he won't need any transfusions either, but unfortunately infections and transfusions are quite common during this treatment...very scary!

The Verdict Is In and Back for Round Three!

So we got the results of the scans, and it was good news...somewhat. The main tumor hasn't changed. It hasn't grown, but it hasn't shrunk either! However, his lymph nodes have gone down and his kidney function is exactly where it should be for a child his age and size! In other words, the chemo was working...on a small scale. We found out that the chemo he was taking has only been used for about two years and there are no studies saying if it is effective or not. They know it works in some cases, but Rhabdomyosarcomas' are very tough tumors and they usually don't respond well to many forms of chemo. We will take what we can get though...any success is still success!
So now we are back in the hospital for round three! Kade is starting a new chemo that has been proven to be effective in 80% of cases. He will be going through three rounds about one month long each. He will be admitted to hospital for two days for the first week, taking one type of chemo. Then he will be going to the day clinic for a few hours the next week, taking another chemo....that he's already been taking. The third week, Kade gets admitted for five days taking another new chemo. Week four, Kade gets a break! This cycle repeats three times and then he gets another evaluation. This is a fairly agressive therapy that has proven to work in most cases...so with a little luck...!

Scans

We just got home from the hospital where Kade has just had his evaluation C.T. and M.R.I. scans. Hopefully we will find out soon how well the chemo is working. We do know it is working, but not to what extent. We are keeping our fingers crossed!

Bald Buddies

Home Again...Again!

So Kade is now finished week two of round two of chemo. His limp is a lot better and his energy level is pretty much back to normal. When he was in the hospital he seemed listless and uninterested in getting out of bed. He just wanted to play with his toys and his video games and be unco-operative with the nurses and doctors! His hair started coming out with the last round so he and his Daddy made a deal to be bald buddies.
Kade had a rough morning as he had to get up early to be at the hospital for an out patient chemo dose and check up today. The feeding tube that has been helping him so much, has been a burden lately. It is extremely uncomfortable to be inserted, since it goes through his nose into his stomach. It is horrible to witness because it seems like the poor little guy is being tortured. Unfortunately he has had to go through this several times now, due to throwing it up and having it get blocked, etc.! When we got home from the hospital monday within a few hours he threw up his tube. We phoned the hospital and were told that he could wait until he came in for his next treatment to have the tube put back in...it was only one day after all. Well it's like he was a freed slave! He ran laps around the house and was playing and getting into trouble just like he used to...it's like a miracle. Unfortunately the need for the tube made itself well known. Kade wasn't able to keep any of his meds down, he wasn't eating and drinking very little. In no time he started to get weaker...well weak for him (it still takes four nurses, or two nurses and mommy and daddy to hold him down to get the tube in.)
Enter the rough wednesday morning...he had to get up early to get to the hospital in morning rush hour traffic. Then on the way there he threw up in the car. Mommy and daddy forgot to put on the cream to numb his access point for his I.V. (yes we did it at the hospital and waited until he was numb...we wouldn't just stab the poor little fella...what kind of parents do you think we are?!) Then he had to get the tube inserted again...yuck, what a morning!
There is however some good news. The Oncologist feels that the tumor is SHRINKING!
I wish I was as brave and strong as our little king! Our love to all and stay tuned for the next exciting adventure...

The Little King

Kade has been happier at home, playing and acting like his most usual self. He has however, figured out that he's got almost everyone wrapped around his finger, enjoying the extra attention and has had to have a couple attitude adjustments to remind him he's four and there are rules to bossing people around. He's like the rest of us, we all enjoy being treated like royalty and if we take advantage; we need to be reminded that we aren't after all, once in a while! (I, myself, rather like my title as Queen of my household.)

As many people know, Kade is set to go back to Children's tomorrow for another round of Chemo. Given that he's been home a few days now, it could be a difficult day taking him back. We're guessing he won't be one bit happy about it. Hopefully a new round of video's and gaming helps take his mind off things.

Kade has started to lose his hair from the treatments, this is normal and expected during chemotherapy. He saw the stylist and got a new buzz cut to help transition him into baldness and daddy was most supportive and got a matching buzz cut. (Elaine reports it looks a bit funny but no pics have surfaced as of yet.....)

Lorna

McBurney Hospital

With his allergic reaction under control, his kidney's functioning better; Kade is coming home today, Dean and Elaine have been in training to care for him. They may just earn an honorary degree from all the information they've had to learn to bring him home and care for him!

Kade will return to Children's Hospital on Wednesday for a 5 day course of chemo and barring any reactions, may go home again after that. This could be the new routine for a while as his chemo treatments are in an on/off rhythm.

Itchy, Itchy

Will Smith in "Hitch"

Well, the latest is that Kade has developed an allergic reaction to one of his medications. He is full of a rash and itchy all over, plus his ears and eyes are swollen. The staff is dealing with it but it does mean he will not get to come home tomorrow. "Soon" is still on the horizon though!

Update

Kade is now off the IV and has his catheter removed. This allows him to be mobile and be outside with his brothers blowing bubbles! There is a possibility he'll be going home soon as an outpatient. His dad and mum are learning how to flush the tubes and about nutrition in order to help facilitate the move home. Crossing our fingers!

Lorna Faulkner

For those who wish to donate.

Many of us aware of Kade's illness want to help monitarily and understandably so. We acknowledge that some things are never covered under medical or extended plans and while Dean and Elaine would never ask for anything, many people wish to help in this way, so to facilitate this, we have opened an account at TD Canada Trust for him.

One option is to go to any TD Canada Trust and make a deposit to Account #6505175 (Dean McBurney).

Another option is to email money transfer to care4kade@hotmail.ca

In your online banking, there will be an option for transfers. There should be an option after clicking that for email transfers, if it does not already state "email transfers". If you have never done it before, you will have to activate it, following the instructions on the screen.

Once activated, you can email money transfer to careforkade@hotmail.ca but note: you will have a question and secret answer to fill out at one point during the transfer and Dean or Elaine will have to know the answer (or password) in order to fully facilitate the deposit. (For example: you can choose the question "What is my favorite movie" and they would have to answer whatever you put in as the password.)

I HIGHLY recommend that the answer NOT be sent in the transfer itself but sent alone in a different email, a PM to their facebook or even call them and let them know what you set as the answer (password.) We must think of security and if anyone else got that password and hacked the email, while the money could be traced, it would just be one more thing to worry about.

One could also consider using a question Dean and Elaine already know the answer to, for example, when their birthdays are or what is my nickname for Dean or things like that.

Please comment if you have any questions or concerns.

Lorna Faulkner