Kade The Amazing!

Well I havent updated this for a long long time, and things have changed a lot. We've been back at Canuck Place for about 5 weeks again now. So much has happened that I can barely remember it all! We were home for a few weeks with several visits to BCCH and CP...but spending most of our time at home. Then Kade started having more back "pain". I put it like that because he didn't call it pain, he calls it the bugness. He would say his back was bugging him but it didn't hurt...if you asked him if it hurt he'd say "no it's the bugness!" It got progressively worse and got to the point that we couldn't be at home anymore. When we got to CP they kept increasing his drug doses and adding drugs. At one point he was getting about 14 different drugs for his pain, and most of them seemed to be doing very little. NONE of them touched the "bugness"! It was very scary and very disappointing. You'll notice that I said "was", but I'll get to that soon. The problem is that Kade's cancer is deteriorating his bones, very similar to osteoporosis. His bone mass is basically being eaten away by the disease and it was getting to the point that his vertebrae were getting tiny fractures. The pain that it was causing, was causing the docs to give Kade huge doses of drugs. The problem is that for a 55lb, 4 foot tall 6 year old...Kade is tough as steel. His little body could metabolize the drugs at an amazing rate and his tolerance is literally astounding! He completely surprised all his docs and nurses at the amount of drugs it takes to sedate him...especially since it never did truly sedate him. As an example, one of the drugs he is on is Sufentanyl (a serious opiate). The dose that Kade was on is the equivalent to 4 1/2 KILOGRAMS an HOUR of morphine...that is not an exageration by the way, that is what it calculates to!
Another drug they were using to sedate him (to change his VAD access) is called midazolam. The first time he got it, he got a 5 mg dose and it put him to sleep. The second time he got it, they gave him a 10mg dose that had to be administered by CP nurses while we were in the oncology clinic at BCCH. This was because none of the nurses there, were trained or were willing to give a child that big of a dose (CP nurses are trained and willing). That time it worked. The next time 10mg wasn't enough...he got 15mg...it didn't work. Then they gave him 20mg...and it didn't work...he woke up when they started to poke him. To put that in perspective, I'm 6'3" and 250 lbs...20mg would kill me (in a controlled medical environment I would be in a coma and on a ventilator!) Now to change his needle they use propaphol...that's the drug that killed Michael Jackson in case anyone was wondering! At least it still works, which is a blessing considering he has his needle changed every 2 weeks.
Okay, so the cause of the pain was his vertebrae deteriorating. So the next thing they tried was a procedure called vertebralplasty. In laymans terms it's called bone cementing. Basically under the ct scanner they inject contact cement (a medical version not found at the hardware store) into the fractures in the bone...kinda like crazy gluing a broken china plate back together. This strengthens the bone and makes it more resistant to breaking down. It's a very complicated procedure done by a very specialized doctor! We were told that 90% of osteo patients get instant pain relief and 80% of cancer patients get instant pain relief! Kade had 8 vertebrae that were in need of this, which they did in 2 procedures one week apart. At first we thought it had done the trick. The pain in his upper back seemed to get a lot better. He still said his back bugged him, but it was lower down. However when they did his lower back, the bugness in his upper back came back with a vengance. It hadn't worked the way we had hoped. This was very stressful and heart breaking...watching Kade writhe in agony begging us to "make it stop" was unbearable...many tears! So 2 weeks after the first vertebralplasty procedure, Kade went in for the next type of procedure...and epidural. If you don't know what this is, They have put an IV catheter directly into his spinal cord. It is similar to what women get when they are going through labour prior to giving birth. The difference is that pregnancy epidurals don't actually penetrate the spinal cord and Kades does. He has an intrathecal catheter that goes into the nerve sack in his lower spine. This means they can give him way less drug and have way more effect! The upside: his pain is virtually gone and we have our baby back! The downside: his legs are numb and he can't walk (he's basically paralysed), We won't be able to go home very often (ocassional overnighter...maybe), and there is a risk of infection to his spinal cord (insert major worry face here!)
The reality is that we've got our baby back! The drugs weren't taking care of the pain in his back, but they were making him sleep 23 hours of the day. When he was awake he was in agony, so they would give him a huge dose of drugs on top of the huge continous dose he was already getting. This would put him to sleep. In case you were wondering you can be asleep or unconcious and still be in pain. This went on for 2 1/2 weeks. After the epidural, they started to aggressively ween him off the drugs. Right before the epidural he was on ketamine, sufentanyl, precedex, and lidocaine continuous infusions (IV pumps.) Now he is on only the ketamine and sufentanyl, and by tomorrow he should be off the ketamine. The sufentanyl is the tough one. since it is such a hardcore opiate and they initially took him down off it too fast, he was suffering major withdrawl symptoms. He had the shakes, sweats, puking and general nasty feelings. It was ugly, so they put his dose back up to close to where it was initially. You really have to ween off opiates slowly. In the last month and a half Kade got more opiates than a hardcore herion addict would've gotten in an entire lifetime...again not an exageration.
Now for the bright side. His legs are numb, but he can still move them a little. He can't stop smiling and laughing because of happiness...he is very much like he was when he was 4, before he got cancer. We have been given our baby back for a while. I don't want to jinx anything but in his latest scans his cancer is still mostly skeletal and hasn't started attacking his organs yet. All that means is that we still have some time with him...maybe weeks...maybe months...I'm not ready to go there yet. We live in the now because the future is to dark to look to...except for tomorrow...we're going to take Kade to see the Lorax, with nurse in tow and smiling kid and all!