Delayed Intensification Phase

Here's the "road map" of Avery's treatments and all of the medicines she has to take on this phase. One day it may be a blurr to me and I may just forget. After all, we starting taking "roids" again and the doctor (and I) forgot to have her fill a prescription she's suppose to take with them. After getting back to Rachelle's I remembered and had to call them back. So here's what I "think" I know about this phase and her medicine Regimen. I always find out more along the way!

Phase 4 (Delayed Intensification) I've heard this is the worse one and it does look nasty!
56 days or 8 weeks long
Days 1-7 & 15-21:
*Dexamethasone pills (aka steroids) by mouth twice a day-4 in the morning & 3 1/2 at night (This is the first time we've tried pills and so it has been a process the last few days trying to teach her how to swallow pills especially since those pills are nasty tasting and although they're small there's lots of them.
*Prevacid taking every day with the steroids. (helps with heartburn)
Days 1, 8, and 15: Vincristine IV Chemo (push over a few minutes) and Doxorubicin Chemo (push over 15 minutes) Just love (ha-ha) to read fatal if given intrathecally or medication errors have occurred due to confusion between vinCRIStine and vinBLAStine. These are things I don't want to read about!
Day 1: Methotrexate (chemo) in her spine Because she was asleep for this procedure she also got a flu shot.
Day 4: Pegaspargase IV over 1 to 2 hours (We go back tomorrow for this one)
Days 29-32 and 36-39: Cytarabine (chemo) IV over 15-30 minutes
Days 29-42: Thioguanine (chemo) pill by mouth
Day 29: Cyclophosphamide IV over 30-60 minutes
Day 29: Again Methotrexate (chemo) in her spine.
Plus medicine for abdominal pain (Ranitidine), for nausea (Zofran), an antibiotic for pneumonia (Septra) given twice on Monday & Tuesday's, and medicine for additional pain.

Wow! I know I'll be glad when this phase is over and so will she! Poor thing! She must remember some from her steroids days during Induction. Evil me did video a few of the crazy "roids" moments, but never showed her . Anyway, yesterday she said, Mom, if I'm mean to my friends at school they won't send me to the principals office right because I'm on those steroids and they make me mean. My teacher knows right? Poor thing is worried about the roids too.
I remember a fellow cancer mom posted all the medicine regimen for the previous phases and I'm going to post them so I can remember all this fun! (Thanks Amy)

Phase one (Induction)
This phase is designed to put the leukemia in remission, which means no leukemia is detectable in the body.
She received a blood transfusion the night we got there and also platelets to get ready for surgery
29 days long
Days 1-28: dexamethasone liquid by mouth twice a day
Day 1: cytarabine in the spine and vincristine IV, surgically inserted power port for future IV's, bone marrow aspirate
Day 4: Pegaspargase IV (released from the hospital this day-after 6 nights there)
Day 8: methotrexate in the spine, vincristine IV (outpatient oncology clinic at PCMC)
Day 15: vincristine IV (outpatient oncology clinic at PCMC)
Day 22: vincristine IV (outpatient oncology clinic at PCMC)
Day 29: methotrexate in spine (outpatient oncology clinic at PCMC)
The main side effects she experienced during this phase were increased appetite (big time and didn't want anything sweet), woke up in the night to eat, irritated easily & moody, ignored everyone and didn't want to play. Avery had severe abdominal pain in her tummy and pain in her legs & heels. She had a really big tummy and round face from the steroids. Her feet and legs got so swollen she hardly walked. She lost a little hair toward the end of the month.
Phase 2 (Consolidation)
28 days long
Days 1-28: Mercaptopurine (6MP) pill by mouth once a day
Day 1: Methotrexate in spine, vincristine IV (outpatient oncology clinic at PCMC)
Day 8: Methotrexate in spine (outpatient oncology clinic at PCMC)
Day 15: Methotrexate in spine (outpatient oncology clinic at PCMC)
This phase I remember she was much happier and her appetite decreased. She wanted to play a lot more but was still a little swollen from weight gain (11 lbs). Her hair really fell out in chucks. She had very thin hair on top and a tiny pony-tail in the back. On July 4th, she finally broke down and buzzed it all off. Counts dropped big time after the 6MP chemo at home. It took us 4-5 weeks to start the next phase because her ANC count had to be back up at 750.
Phase 3 (Interim Maintenance I)
8 weeks long
Days 1, 11, 21, 31, and 41: methotrexate by IV and Vincristine by IV
Day 31: methotrexate in the spine too
This phase brought "some normalcy" as far as how Avery was feeling (well the new crazy normal) back into our lives. During this phase I was put on bed-rest, had baby Carson, Kelsi turned 2, Avery started Kindergarten and Carson was blessed at church.
Phase 4 (Delayed Intensification) This is the phase we just started so I wrote about this up above.
Phase 5 (Interim Maintenance II)
8 weeks long
Days 1, 11, 21, 31, 41: methotrexate IV and vincristine IV
Days 1 and 31: methotrexate in the spine
After this she starts maintenance phase and I don't have a lot of details about this one yet. On Friday at treatment I quizzed the nurse, Jason. Sounds like we'll go once a month and then every 3rd month she'll get lumbar puncture with Methotrexate in her spine plus take the 6mp chemo at home every day.

Avery's First Day at Kindergarten & Last Treament on this phase!

August 31st, 2011: Picture of Salt (Kelsi) and Pepper (Avery) before I dropped her off to her first day of Kindergarten.

Avery & Saydee! Their hair is coming back, but Bald is still Beautiful.

Avery & Mom!

First day of school celebration August 18th

Aug. 23rd, 2011: Meeting with her Teacher Mrs. Mathews, seeing her new classroom and finding out what she knows letters, numbers etc...

We talked very little about going to Kindergarten because I didn't know if she could go and I didn't want to get her all excited about an experience she may not get to be a part of, something that before all this, she would have been super excited about. As it got closer, I asked her oncologist (Jennifer Wright) for the up-teenth time about her going and she still gave her the go-ahead. I finally could start getting Avery excited for it. People asked aren't you so sad that Avery is starting school. I never thought that she may have to miss Kindergarten so I was just so glad she was able to start this new experience with all the other kids, but sad for what she has to go through. I'm hoping she can go as much as possible, but at the same time it's so scary worrying about her low immune system and getting sick. She has been off treatments for a whooping 15 days so that gave her a chance to have the best experience possible under the circumstances

Her last treatment on this phase (Sept. 1, 2011) Interim Maintenance I, her counts were only 700. They needed to be 750 to up the dose of MTX chemo. I decided I'd better stay home with Carson who was only a few weeks old and Kelsi who feels so left out. This really has been so hard for me feeling like I have to choice between 3 children who all need me. I hate feeling like I can't be there for all of them especially when it's so hard on them. When they drove away at 6 in the morning I felt so guilty for not going, but Johnny really does an awesome job. He doesn't ask a zillion questions like me, but he knows just what to do and Avery knows she's in good hands. Johnny's dad rode up with him. Johnny said it hit him to see how real this really is- seeing all the cancer kids and just seeing Avery getting chemo. The medicine that will save her live, but also is so dangerous.. They didn't have it ready because due to her mouth sores on the last visit, her Doctor wanted to see her first to decide if they were not going to give her MTX chemo at all (only vincristine) or just give her the lower dose like the week. They decided on the same dose as the week before. They made it home safety and for the last few weeks she has felt so good.

We start the "Worse" phase called Delayed Intensification in two days which she has three treatments in one week. So not fun to be back on the horrible steroids. I still vividly remember how swollen & sad she was and how much pain we cried through and how she was a totally different girl who rarely smiled. How I would have done anything to just take it all away from her. I never want to go back to those days and hope the on 7 days off 7 days of steroids will be more bearable. I'll never forgot those who were so supportive through those really hard times!

September=Childhood Cancer Awareness Month

SEPTEMBER IS CHILDHOOD CANCER AWARENESS MONTH!!
The sad part is... it seems like until someone you love is affected by Childhood Cancer and you are thrown into the "cancer world" too many are not even aware of how many children are dealing with cancer. Having to watch your child deal with surgury, needles, blood transfussions, chemo that can cause so much damage, but ulterately will save their life, pain, throwing up and being so scared, too young to fully understand what is happening to them... it is then you become fully aware. Your hope is that you can make more people fully aware.
Facts-Over 13,000 children in the US are diagnosed with cancer each year - 36 children will be diagnosed with cancer today, tomorrow, and the day after that. 1 out of every 5 of them will not survive - cancer is the leading cause of death by disease in children under age 15 in the US
Of the survivors, 3 out of every 5 of them will suffer devastating life long effects from the treatment used to save their life
There are 12 major types of childhood cancer, and those 12 types have to share a miniscule 3% of the government funding for research

We have learned of so many inspirational stories of kids that have cancer. They are all so brave and so tough to go through all they have to. I hate that so many little kids have to endure so much. They are my hero! My cancer mom group is spotlighting some of the amazing cancer kids who are currently being treated at PCMC. Read this truly remarkable story of such a brave little boy
http://utahcancerfightingcuties.blogspot.com/
And of Course my favorite hero!