Thanks!

Thanks for all those that have remembered us in your prayers! It does help and we appreciate it! Avery is doing better; still up last night crying in pain, but still so much better walking and moving so thank you! She missed school this week except for taking her on her field trip to the pumpkin patch. I went with them to help. She was a little uncomfortable because her hair is gone again. Last night Becky come to shave the few pieces left to make it even. She got to shave her Dad's which put a big smile on her face. We have came such a long way since the last shave party! It's crazy how you get use to their bald head and she keeps saying how soft it feels. I think she looks adorable- I just want her to feel comfortable with it! She's such a tough girl for what she has to go through. I'm trying to remember "life is good" we really have so much to be grateful for and try to not dwell on the things we can't change.
We made a sticker chart so we could count down the days when we were done with the steroids! We were all so glad to be done!! Here you can tell her hair that had grown a couple inches was starting to come out again!

Oct. 7, 2011-We celebrated by burning the chart along with our extra pills and roasting smores at our house!

Oct. 12th-Going to the pumpkin patch on a field trip. She finally was getting her strength back and the pain was getting better in her legs and arms.

Oct.11- You can see there is just a little peach fuzz of hair left. This is before Becky shaved any stragglers, but not much was left.

I Love to see her smiling!

She was most excited to shave her Dad's again! She wanted to give him a Mohawk or strips or maybe I'll just leave bangs at the front.

Love the bangs Johnny-should have left them! I feel tired and exhausted most days, but Johnny looks like he could really use some sleep himself! She loves her daddy and he adores and would do anything for his girls!

Saydee once again kept wanting to shave her hair again, but we decided she better let it grow. This should be the last time Avery loses her hair! Making Memories we won't forget.

Say some prayers!

Once again we have been on the steroids this week. Just finished them Friday! Yay for that and no SL trip this Friday! Yay for that!! However as the week has gone by, Avery has went down hill. Nothing life threatening or anything like that, but is having severe leg and arm pain and for a mother (also for her father) it's excruciating to watch. Her medicine doesn't seem to be helping. She has been sleeping a lot this week and being up for a few hours wipes her out. The chemo with steroids mixed (more particularly the steroids) have once again caused her to have a hard time walking because of the leg pain. Her leg pain, even arm pain, this week has increased with each day and the last few days have been tremendous, similar to what we experienced in the first month during Induction. Luckily, as its gotten worse this week, we get to be off the pills instead of continuing. Please say some extra prayers for her. The roids have again done a number on her moods. Saying some not so nice things. She hates the noise (crying) the other two children make. Her hair in two days is so near to being gone, which I was warned she would lose again in this phase. And by again, she has really never completely lost all of it before. She lost most of it on top, but still had hair in the back that was really thin. Finally she broke down and shaved it. Her pillow has been covered with hair! She told me the other day (I hope it's the roids talking) that she doesn't like herself and she's ugly. For a mother, it breaks my heart! Emotionally she has some really good moments, but also emotionally some really hard moments.  As I I write this, I can't contain my emotions! Please remember her in your prayers. I can't watch her in so much pain. The roids take 7-10 days to get out of her system. We will pray for sooner! Thank you! We appreciate your prayers and know that our Heavenly Father will hear them!

Time for the Zoo!

We decided to make this trip fun before getting Avery's treatments the next day (Sept. 30th). She has been struggling with going and of course I don't blame her. Although I try to tell her all the fun things she can do while we are there: crafts, read books, watch movies, play games. Now doesn't that sound like fun? When I told her about the zoo she said I know what you're doing-you're just telling me were going to the zoo so I'll go to Salt Lake. Sad she didn't believe me, but the light in her eyes when we walked through those zoo gates was priceless. I love seeing her being a kid, enjoying her childhood and not having to worry! It was the first time, we took all 3 children and Kelsi was so glad to be with us. She probably thinks this is the kind of fun we have every time we leave and say we're taking Avery to the hospital. It was a good break from thinking about everything cancer. It consumes my every thoughts. Remembering all her meds, planning weekly trips, watching her in pain, thinking about what could happen in the future (late side effects) blah blah. So nice to focus on some fun and forget our worries for a bit! Treatment today, went fairly smooth. ANC is 1100, dropped from 6100, but I felt good about it. When on steroids their ANC gives a false high reading. We were off for 7 days, today back on the "roids" for 7 more days. Today was the same chemo as the last two weeks. It makes me sad that she worries and gets so scared to go to the hospital lately. This month she has started throwing up even before she gets her chemo. They gave us a pill to try for next time to help with nausea and to relax her a little. I tell her not to worry that's her parents job and not to be scared where by her side the whole way. But only I can imagine at 5 years old how hard it must be for her at times. After the last drip of toxins entered her body we jetted out of there. She was wiped out and instantly fell asleep. On the way home she woke up hungry & happy! Today while sitting in the infusion area I looked over and their was a 8 months old getting Chemo. I got tears in my eyes has it's hard to understand why these little ones have to go through this. I felt for this mother today & pray things go well for them. As we left the hospital I talked to a mom from Cedar who's child has relapsed from ALL, a cancer mom's worst nightmare come true. Again, I pray for these other families going through so much. At times I know it's hard for Avery to understand that this medicine that makes her feel so miserable at times will save her lives. She understands so much of whats going on. Avery you are so strong, brave and courageous to be going through so much and at such a young age! For me, the third child has been challenging. I feel like I run around all day and never get as much done as I'd like. The baby wakes every few hours and one of the side effects of steroids is difficulty sleeping so Avery struggles sleeping in the night so there's not a lot of sleeping in this household. So many times all three are crying for me, all for different reasons, but I am so grateful for them and know we can do this! So grateful that my sister has been willing to watch my kids while we go to the hospital. I love me 1 pepper & 2 salts:)

Roller Coaster!

Just one why I describe our lives "Roller Coaster". As a mom it's hard when one of your kids are sick. It was hard going to work and not always being able to stay home with them when they were sick, but they were sick a few days maybe even a week. Now, a week of watching your child be sick sounds easy, 2 1/2 years is exhausting. This last week has had some good moments and not so good.

We started the DI phase on Friday (16th) We gave Johnny a break and Kyle came with me for the weekend. She had treatments on day 1 and day 4, so we stayed for the weekend and left after her treatment on Monday, then home for a few days and back up on Friday (23rd) The appointment was bright and early at 8:00. So we left Rachelle's house by 6:30. She was given the chemo VCR and DOXO and this was our first day on steroids again. She also had a lumbar puncture. The last few times we have been at the hospital she has really started getting nervous and anxious. She refuses to eat and drink anything at the hospital & sometimes throws up before she gets chemo. It wipes her out and she was ready to go back to Rachelle's house to see her cousins. She throw up twice after steroids, so the Doctor wanted us to continue them for an extra day. She's a trooper even though she feels like crap when I go to take a picture, most the time, she tries her best to smile. They have therapy dogs come visit the kids and the nurses at the RTU posed for a picture. The nurses had lots of orange bands on their wrist since September is childhood cancer awareness month and ended up with the ones Kyle and I were wearing to add to their collection.

The next day she had more energy. I continued to give her medicine for nausea. In the afternoon we went to our first cancer event which was a fundraiser called Alex's Lemonade Stand you can learn about it here.
A fellow cancer mom, who's daughter also had ALL and is done with her 2 1/2 years of treatments does a lemonade stand every year to raise money for this foundation check her story out here.
Her mom, Kristin did an amazing job. On her blog, she does such a good job at describing how she feels and I totally relate to her being devastated about being so close to her goal of raising 10,000 and the passion she feels to help all the children fighting cancer. She was only short $700, but she should feel so proud. She put so much into it and we had an amazing time. So fun for all of us, but especially Avery. It was nice for Avery to meet and see other kids that are going through what she has to go through. She had a star on the wall of courageous and they gave a framed picture with some of the cancer kids to one of the sponsors. They also had her come up with other cancer cuties to recognize them. Kyle and I won raffle prizes and we all put in for a free drawing every hour and Avery won that. It was a good day!

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!