Every spinal chemo but two (I think) we have had nurse Judy. I LOVE Judy, I count her among my friends. I recently found out that no one gets the same sedation nurse more then a few times, but that when Judy saw our names on the schedule she would fight for us :) Judy was the nurse in the room when Channing was diagnosed and her sweet, peaceful and unimposing spirit was a huge comfort during that time. As we listened to the Dr. tell us that our son had cancer Judy sat quietly next to a sedated Channing running her fingers through his hair and monitoring his vitals. She told me on Thurs that she knew there was going to be something different about us. She said she observed us as we were told the news, she was surprised that I noticed the tissues in the Oncologists hand when the Onc walked into the room to tell us the news. Judy said she was impressed that we waited until the Onc left the room before we broke down, that we took the time to mourn and cry, and that she remembers me sitting on Kindt's lap and crying together. Then she remembers me standing up, composing myself and saying, 'ok, now what do we need to do?'. She silently watched us call our family and tell them the devastating news, and make plans for Jakob and Ema. Judy told me she was impressed that we took the time we needed, then got right down to business to figure out the next step. We had a long discussion about it while Chan was sleeping off the sedation this last time. It was therapeutic to discuss our memories of that day. I will miss Judy and I's long conversations while Channing slept. For 14 long days over the last 2 years we have discussed anything and everything. She treated my son like her own child. She treated me like a friend. I will never forget Judy and the peace she gave me. I am so grateful to amazing nurses like Judy.
Since it was Channing's last sedation I watched. I had never stayed in the room before. I always left after Chan was asleep to go grab lunch, but I decided to watch the last one. It was a little weird to watch a procedure on my baby, but I think I have been desensitized to watching him undergo procedures and pokes and what not. I was watching a procedure and not really thinking about the fact that it was my child that the procedure was being done on. First they pushed Atropine (dries up the mouth to make the procedure safe, Chan had a bit of a red throat so they wanted to be more cautious), then they did the Fentanyl (a pain reliever 100 times more powerful then morphine) and Propofol (general anaesthesia). They put Chan on his side and he actually started to wake up a few times so they gave more propofol to keep him under. Then Dr. Patel made sure Chan was in the right position on his side, cleaned off the area really well with the red Betadine, then stuck a needle slowly into Channing's spine. The needle goes through the membrane and into the fluid that is around the spinal cord. Then the needle is removed and the tube stays in place and then spinal fluid drips out into a diagnostic tube to test for any lurking Leukemia. This part was a surprise to me, I had no idea that this was a diagnostic and administering procedure. I just thought that he was given the chemo and that was it. It makes sense though that they take out the fluid they are going to replace with the chemotherapy. Then they place a syringe in the tube and slowly and uniformly push the Methotrexate into the spinal fluid. Once that is completed they take out the syringe and tubing, clean up the Betadine, and put on a band-aid. The whole procedure takes maybe 5 minutes start to finish. Then we wait for Chan to wake up! Sometimes I would pick on Chan while he was sleeping, like pick up his hand and drop it, or tickle his feet, or open his eyelids, haha. We needed to wake him though and sometimes it was the only way :) Mostly though, I would just talk with Judy and watch my sweet baby sleep so peacefully.
When Chan was diagnosed Kindt asked for a copy of the entire study protocol and we were given, a bit reluctantly, a binder with 250 pages of info in it. Some of the pages are dedicated to each drug and their risks and side effects. I was reading the side-effects of Methotrexate when given into the spinal fluid and thought I would share with you them (though if you read the possible side effects of any drug you would be stunned). I will star the effects we have noticed on occasion with Chan (never serious though, just a small side effect)
Likely side effects: Nausea* and Headache*
Less Likely: Difficulty thinking or learning, confusion, vomiting*, rash*, sleepiness*, extreme tiredness*, unsteady walk*. leg pain*, drop in red and white blood cells and platelets (which can make you feel tired*, weak*, easier to get infections*, and cause easy bruising).
Rare: seizures, partial temporary paralysis, severe damage to brain tissue, severe allergic reaction, bleeding into space in spine where injection is given
Sometimes I am taken aback by the fact that we are pushing poison into my son intentionally. I know its the only thing we can do, but it still feels odd. I am also amazed by the fact that all of these drugs and medications have been found to kill Leukemia. I am grateful that their are people out their who are able to figure these things out, they have saved my son's life. I am also grateful that I never have to watch this procedure again, that we don't have to push the Methotrexate into his spinal column again (he still gets an oral MTX though). Our journey with chemo and cancer isn't over yet, but we are getting closer to the finish line!!
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