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!