Been A Long ATime!

Wow life comes quickly, been busy and haven't updated this in forever. For starters we are very near the end of Kade's treatment, barring any issues that is. He goes in for chemo next Tuesday and gets 6 more days starting Tuesday and finishing on Tuesday following. After that he starts getting his final scans for his final evaluations, starting in the middle of June. The big day for us is July 4th. That is the day we go and have a meeting with Dr. Tim and find out if the treatment has worked or not.... we find out if Kade is Cancer free, or not! With luck (keeping our fingers crossed), Kade will then possibly go on a maintenance chemo that he would take at home. Then he will go in for an exam once a month for a year. After that it will be every three months for a year... then six months....then once a year until he is a teenager. This plan may change depending on what they find out in the final scans. I guess we'll find out then! Until then we wait with baited breath!

2nd Home!

Another fever, another trip to the hospital. So on Friday Kade got a platelet transfusion because his platelet count was ten. All his other counts were good though, so I thought we were in the clear. His white blood cell count was 10.5 and his neutriphil count was 9.8! Well Sunday morning he got a fever and off we went to the hospital. They did his blood work and his white blood cell count was 0.6 and his neutriphils were to low to count. They dropped to that level in less than a day and a half! He was getting GCSF injections that kind of artificially inflate his WBC counts though....but wow that's billions of cells dying literally over night... or so it seems!
This time though, he doesn't have a cold. We're not quite sure what he has. His fever is higher than it's ever been and he was nauseous and vomiting, which is very scary. He actually only threw up twice, but he's never done that before. His chemo doesn't even make him nauseous... the boy has an iron gut usually! So they have him on antibiotics and we are waiting for his blood cultures to see what kind of bug he has. If his cultures come back positive he will have to stay in the hospital for a full course of antibiotics. That will take two weeks, plus or minus a day. If his cultures come back negative, then we just have to wait for his counts to come back up. It takes at most 48 hours to culture the blood. If nothing has grown by then, it will mean that it is negative and home we go...if not, then here we stay. However on that note, little Ayzac is now fighting Pancreatitus and is being flown in from Kamloops hospital as we speak. So we will be here when they get here. What a nightmare! I long for the day when we get together out of a desire to see each other instead of medical reasons for our children!

Good news...knock on wood!

Just a short blurb today. Kades chemo schedule has changed a little now. He goes in for chemo every 3 weeks now, so as long as he doesn't get a fever he gets to stay out of the hospital for longer periods of time. His blood counts don't recover as fast anymore, so we have to be even more careful now. Most of Elaines family is either getting over, or just getting the flu... so we haven't seen them in a couple of weeks! We miss them, but they can stay away until they are healthy!
We got more accurate numbers from Dr.Tim the other day. He said that rather than cubic centimeters, millilitres might be easier to understand. So when Kade was diagnosed his primary tumor was 330 ml. Before radiotherapy, his tumor was 86 ml. After radiotherapy, his tumor is now 48 ml. In other words his tumor is about 1/6th the size it was originally! YAY! Now this doesn't include the leisions on his bones, or his lymph nodes. They are shrinking as well though.
Other than that we don't have much to report. I felt like the worst father in the world a couple of days ago. Kades ng tube got plugged ( his feeding tube in his nose ), so I was trying to flush it out. The end of it has a tenser bandage type of tape on it to keep the cap on. So I grabbed the end and tryed to pull the tape off, because it was in the way. As I did that Kade moved away quickly, and since I was holding his tube firmly it got pulled out! I felt completely awful! The absolute worst ordeal for Kade to go through in this whole cancer treatment thing, is getting that damn tube put in. It's very uncomfortable and painful, it scares him, makes him cough and gag. He screams and fights, and it is horribly difficult to watch... it's awful. It's not the worst procedure he has to go through, but he is usually under a general anesthetic for the other ones. For the tube he is almost always awake for it. The only time he has been out for it, is when they are doing another procedure that he has to be sedated for! Well he got a new one today, and it was horrible as predicted. However Mommy bought him a toy for being brave, and kade doesn't hold it against me...he knows it was and accident... I still feel shitty though! My brave little man.
So until next time, stay healthy and happy and make sure to get cancer check ups!

Falling mighty!

Today is now Friday January 28. Kade has been in childrens hospital since last Sunday. The radiation and especially the chemo have been hard on our little hero. His blood counts dropped to the lowest point ever. In previous post I've said what his counts are supposed to be at, so forgive me for not repeating myself, and check them out if you like. This time Kade got a fever and we ended up here not because he had a cold or an infection, but because his counts were so low his little body was basically fighting itself. When cancer kids come in with a fever, they immediately do a blood culture that takes a couple of days to get results. Kades were all negative again...which is very good! When we came in his counts were: white blood cells 0.1, Neutriphils were 0, hemoglobin was 72, and his platelets 36! His counts were still on the way down too! The next day his hemoglobin dropped to 68, so he got a transfusion of red blood cells. Then his platelets dropped to 26... so he got a platelet transfusion. He has also been getting GCSF since his last chemo treatment (last Friday), and still his immune system basically disappeared. We've actually been very lucky he didn't pick up a bug... that might've killed him!
The biggest problem is that Kade became constipated. Due to the radiation his little bum is very raw and he has open sores. That makes going pooh very painful, so he holds it in...and got constipated. He was pumped full of antibiotics and laxitives. Finally his bowels let go... there was alot of screaming and at on point he broke down crying and told me he couldn't take it any more! Needless to say I almost lost it as well. It's quite hard to hear your 5 year old son who has a bad form of cancer (who's already been through hell) say he can't take it anymore!
Pain is stopping him from going #2... which at this point is stopping him from going home! His counts were alot better this morning, his wbc was 3.8, his neutiphils were 1.77, his hemoglobin was 98, and his platelets were 76!
This afternoon he was disconnected from his IV and thus taken off the antibiotics, now we are just trying to convince him to pinch a loaf...then we will be able to go home! They said if all goes well, we get to go home tomorrow!
We also got some of the results back from his re-evaluation scans. His kidneys and organs are functioning normally, but his bone scan shows no change. This doesn't surprise me however, considering that the treatment has been focused on the primary tumor. Also a bone scan isn't as revealing as a pet scan. The pet scan shows live active cancer, but the bone scan shows old dead cancer as well...even just scar tissue. We are waiting for his MRI on tuesday. That actually will show his primary tumor in images, so we will be able to see what the radiation has done! For now we wait and pray!

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...