Jordyn's Journey to Triumph Over ALL (Acute Lymphoblastic Leukemia)

Monday, October 22, 2012

The dreaded delayed intensification has arrived...

First, I apologize for the poor picture quality... I only had my cell phone camera today, but I figured poor pictures are better than no pictures...

Jordyn had a clinic appointment today. She was also due for a lumbar puncture (or back poke as the people there tend to call it). This means she wasn't allowed to eat anything after midnight last night, and clear liquids up to 3 hours before her lp (which just happened to be at 2:30... Ughhh...) I always worry about her sugar since she also has ketotic hypoglycemia and really isn't supposed to go more than 8 hours without food of some kind... Thankfully she did okay with it today. Anyway... I am getting distracted.

So, we got to clinic at 12:30 for her appointment (she also had an ECG scheduled at 1:00). It was a busy day at clinic I guess, and there was not a room for Jordyn, so they had us wait more in the waiting room. By about 12:53 or so, we made it back to a room. They talked to us and had us fill out Jordyn's LP forms, accessed her port, tried to draw blood, and then sent us on our way to cardiology. (Jordyn had to get an ECG and an EKG to check her heart function before she started her new chemo today. The new chemo (doxo-something?) also known as the red devil by some cancer moms has been known to cause damage to the heart and so they monitor heart function while the kids are on that chemo. We made it about 20 minutes late to her ECG appointment, and Jordyn was really scared because it was new and different and she didn't know what to expect. She held my hand for the first 20 minutes or so until she realized that it wasn't going to hurt. Then the ECG tech finished and had the EKG tech come in and do that test. Jordyn was able to choose a prize for being so brave. She chose a silver sparkly hotwheels car.

Then we hurried over to the RTU (Rapid Treatment Unit- they do procedures that don't need a sterile environment, and are much more welcoming, and less scary than the operating rooms.) We registered and headed back. It is so much nicer when she is able to get into the RTU instead of the OR... I am able to carry her back and set her down on the procedure table until she falls asleep. Sometimes they even let me hold her in my arms until she is out. When it was our turn, I carried her back, and they had me set her down. They pushed the white anesthesia through her iv line and she was out within 5 seconds or so. I am almost always surprised at how quickly she falls asleep. Then I went out into the hallway to wait. Within about 5 minutes or so, Virginia (the person who performed Jordyn's LP and performs most of her other lp's as well) came out and said it went great. Jordyn slept in the recovery room for awhile and about 45 minutes later, they came and told me she was waking up and I could come see her. She usually tries to sit right up as soon as she wakes up, and doesn't realize how unstable she is, so she wobbles and tips and has to have a person right next to her to make sure she doesn't fall right over, even though she says she can do it and doesn't need the help, she really does... After she wasn't so tipsy, we were able to take her upstairs to clinic again, in a wheelchair with a seat belt (didn't want her to fall out...)

We were the last clinic patients there, so we just had our doctor consult in the infusion area. Jordyn kept trying to get up to walk around and she was not stable at all... She got her doxo(rubicin?) which is a red liquid chemo as well as her vincristine. This is a new chemo and I am nervous to see how she reacts to it. She has been getting more and more unstable and having a harder time walking, most likely as a result of the vincristine. She is very shaky even 2 or more weeks after getting it, and I am starting to worry about how often she falls and trips as a result of the chemo's she is getting. Her doctor is going to try to get her in to see the physical therapist next time we go in. She has to go in again later this week to get Pegaspariginase, which is a chemo that runs over an hour or so and she has to be monitored for about an hour as well to make sure she doesn't have a bad reaction to it, and if she does, she will be around people who can help. Jordyn is also starting steroid pulses tonight. She will get steroids for 7 daya, then off for 7 days, then on for 7 more days. The steroids will likely cause roid rage, as well as intense hunger, that she will hopefully be able to quench, because the chemo's make her not want to eat, and that is a hard place for a person to be in, especially a kid...

Saturday, October 13, 2012

Upcoming Fundraisers

Here is one of the flyers for the first fundraiser in November. I will try to add more about it soon.

Thursday, October 4, 2012

Last chemo for Interim Maintenance 1

I don't know how I got so out of the loop in just a few weeks, but apparently I am distracted or something... Anyway... I guess Jordyn had her last IM1(Interim Maintenance 1) treatment today. This means in about two weeks she will start DI (Delayed Intensification) which is supposed to be pretty miserable... Espescially the second half which will fall right over the Thanksgiving and Christmas holidays... Today, they gave her the higher dose of the Methotrexate again, the same dose that made her neutropenic last time. They are hopefull she won't drop too low since her anc was really good today. We gave her the benedryl and phenergan to help with the nausea on top of the zofran they gave her at the hospital, but apparently it wasn't enough... She is feeling pretty sick and miserable at the moment. I didn't take any pictures today because I am not feeling the greatest myself. My doctor told me the other day I need an endoscopy, but the doctor she referred won't be available till Halloween to do it... Anyway... So we both took naps today, and I didn't do much in the way of pics for the blog. I took pictures last time that give an idea of what her day at clinic and the RTU are like but haven't gotten those up yet. Anyway... She is feeling yucky, and sad.... Hopefully she feels a little better soon...