It is the first week of the second part of the last most intense phase of Jaidyn's chemo.
(say that 3 times fast)
This part of this phase is a month long consisting of two 4 day in a row chemotherapy drugs. You think thats a lot to remember, you should see all the new info that is stored up in my brain. They pretty much have you qualified to become an Oncologist through out all this. Maybe you hear these terms if you know someone with cancer or maybe it goes in one ear and out the other, but with a child going through this it is your job to remember everything. Probably more than you should... or that just might be me and my strong interest in medicine. Especially in Children. Anyway... back to the topic on hand.
Jaidyn's Neutrophil count was up to 1.1 on Wednesday so we were able to finally start the second half of her Delayed intensification phase which has been postponed for the last 2 weeks due to her Neutropenia.
Day 1: Thursday Jan 19:
This phase started out with an all day session at the clinic. We started it off with a Lumbar puncture, which for the first time I was able to stay in the room during her procedure. This was so exciting to me since she's had it done 15 or more times I never really knew what happened during it. They start it by giving her the IV Ketamine which takes effect right away she gets quite dizzy and wants to lay down. Normally kids just lay there watching Dora, Backyardigans or whatever highly obnoxious video they choose. But Jaidyn was a chatty Kathy. She just kept looking at me saying "hi mom, hi mommy, hi, HI, mommy? hi mommy? are you there mommy? hi, I love you mommy..." and so on. It was so cute, yet kind of broke my heart at the same time. knowing she was so doped up. I asked if she does this when I'm not there, they kinda laughed and said that last time she told them all about our new kitty cat... Which by the way does not exist.. I'm not sure where she got that from. They were laughing and saying this might be a preview of what to expect for her teenage years when she comes home drunk for the first time.
During the procedure, they place a needle in her lower spine and drain out out a few different vials of spinal fluid which they said is clear and looks great, then they inject the Methotrexate directly into her spinal fluid and then its done. All together takes about 10 min and she is then wheeled back to her room where she has to lay flat for an hour to decrease the chance of headache from spinal fluid leaking.
Once she finished her hour of laying flat, she started on her 2 hours of IV hydration. The reason for this is because she was receiving a new drug called Cyclophosphamide.
This drug has known side effects of being quite hard on the bladder. So they make sure that your urine is at a specific gravity before they can start administering the chemo. By extra hydration they can get your urine to that specific gravity faster.
After the two hours Jaidyn had to pee in the hat, which is like the most exciting thing to do ever to her. Her urine was tested and she was all set to go to start. The chemo was given over an hour, and once it is done she is then hydrated for another four hours. As well as her urine is continuously checked for blood, since the drug can make the bladder bleed. This obviously concerned me, but they assured me it was quite rare for anything like that to happen.
So we went about our day, entertained ourselves with puzzles, iPads and painting amongst other things.
They really do such an amazing job to keep that playroom full of everything a child could want.
When it was time for Jaidyn to go to the bathroom, her urine was dipped and low and behold it showed Large amounts of blood. (The scale goes trace, small, medium, large). So that kinda had everyone concerned, but soon after a little investigation Jaidyn's #1 Nurse Kristy realized that her urine from BEFORE the chemo had blood in it as well.
So that opened up a whole other book of questions as to why she had blood in her urine in the first place. Bladder infection? UTI? Kidney's? Jaidyn hadn't been complaining of any pain when urinating or any back aches in her Kidney region. So why was there large amounts of blood in her urine.
They checked it again, and again, and a few more times and it continued to show medium to large amounts of blood. So they decided to give her a drug called Mesna which helps coat the bladder. As well as that drug, Jaidyn would also be getting another 2 hours of hydration. So all in all Jaidyn had an LP, laid down for an hour, 2 hours of hydration, 1 hour of chemo, and another 6 hours of hydration. Plus a quick dose of Cytarabine also known as Ara-C. This drug takes 5 min, and is given over the next 4 days. Nothing like putting in a 10 hour day at the clinic.
Thank goodness for paints and popsicles!
Day 2: Friday Jan 20th
She was started on IV hydration right away, she hadn't been feeling that well so all she really wanted to do was lay on the couch and watch Backyardigans on the little DVD player. Kristina- the lady who is in charge of Child Life and the playroom is Jaidyn's new best friend since she brought Jaidyn a pillow and warm blanket for her belly. Jaidyn pretty much relaxed the whole 5 hours. They dipped her urine a few times, all of which still showed large amounts of blood in her urine, with trace amounts of white blood cells. That shows there is a possible infection. They weren't going to continue testing her urine over the weekend unless we could visibly see blood in her urine. Her Ara-C was given and we were off.
Day 3: Saturday Jan 21st
Since it's a Saturday, the oncology clinic isn't opened, Jaidyn gets her chemo on the 3B Oncology ward. Andy took Jaidyn himself today, since it was JUST going to be Ara-C, and would only take 5 minutes it didn't need two of us there. Basically they were in and out with no complications.
Day 4: Sunday Jan 22nd
Andy left to go back to Keremeos, so I took Jaidyn in for her quick appointment. We played in the 3B playroom for a while, since she hadn't been up there since the summer. (All of her appointments are done downstairs in the clinic.)
After her Ara-C was given, and we decided to venture downtown and meet up with a few friends of mine. We went out for lunch with a friend, and within an hour she went pee 3 times. Didn't really think much about it, but thought it was kind of odd. Then we went to another friends house and were there for about two hours. Within those two hours she went pee 5 times. So now I was a bit concerned. So I asked my friend what she thought, was I being overly concerned? Given that the last few days showed blood in her urine, the excessive urination over the last few hours and we were still in Vancouver, I figured I should just put a call into the on-call Oncologist just in case. Based on what I told them, they agreed it didn't seem right and asked me to come into Emergency right away so they could check her out. Unfortunately my visit with my friend was cut short and we were once again on our way back to the hospital.
We were admitted to the ER and the asked the routine questions. No fever, no burning with urination, just constant peeing. The doctor came in a few times giving us different options and what she thought it might be. The urinalysis still showed the blood and based on the fact that in the last few days there had been slight elevation in white blood cells she was going to treat as if it was a UTI. IV antibiotics were started and she called up to the Oncology floor to see when we could get a room. I was kind of surprised she wanted to keep us overnight, and she even felt weird doing it since Jaidyn seemed so fine. No fever, still bouncing off the walls, just peeing a lot. After a couple hours of antibiotics she came back in and said that she was going to let us go home and we would just follow up in Clinic with Dr. Rod tomorrow. To me that sounded much nicer than staying unprepared in the hospital overnight. Jaidyn was quite pleased to go home as well. She gave me an oral dose of antibiotics, that I was to give Jaidyn at 5 am, and we were on our way.
Day 5: Monday Jan 23rd
Jaidyn conveniently woke up at 445am (a regular occurrence lately) so I was able to give her the antibiotics without having to wake her up. That however, backfired as she projectile vomited as soon as I gave it to her. After a quick shower, and sheet change, I was able to get her back to sleep.
April, our lovely nurse that follows us on a regular basis phoned me a few hours later to see how Jaidyn was doing. I let her know the oral dose of antibiotics didn't exactly happen as planned, so she suggested we head back into the clinic to get an IV dose of antibiotics and that should be enough to get rid of whatever was hanging out in her Urinary Tract.
So off we went back to Children's for the 5th day in a row. They quickly hooked her up to her IV pole and started the antibiotics. Luckily they had kept in her butterfly for all 5 of these days so she didn't have to get poked each time. It was short and sweet today, but suggested Jaidyn get a ultrasound on her Kidney's just to make sure that's not where the blood was coming from. That will be done on Thursday, as well as she will start week two of the 4 day Ara-C dosage. Lets hope that its quick and easy like it should be.
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