Phase 2, waiting to start Phase 3

The second round of treatment she no longer had to be on steroids but continued the weekly trips to SLC. This phase lasted two months. So by the end of May we made 11 trips to SLC. (It would've been 13 but we actually got two weeks off!) Two weeks of every month this phase we also had to have chemo at home through home health. This month Meg felt really pretty good but did throw up twice. (The first time she threw up was kind of a "funny" story. I'll share that another day!) Other than her bald little head, you really wouldn't even know she is sick. She really is amazing!

Right now we are waiting to start her third phase. The start date of this phase is count dependent. Meaning all her blood counts have to be at a certain spot to begin treatment. Two weeks ago her numbers were the highest they had ever been and we were just sure she'd start the next week. But as we are quickly learning, you never guess or assume with cancer because you'll probbaly be wrong. And wrong we were. Last Thursday Meg had her CBC (complete blood count) and her ANC (absolute neutrophil count) was actually the lowest it had ever been. Sooooo, we wait. Tomorrow morning we will have a CBC again and see where her numbers are.

We are anxious to begin this new phase because it's a biggie. Meg will be admitted to the hospital and have high does Methotrexate (chemo) that will run for 24 hours. The longest chemo she's had yet has been two hours. So, we are nervous to see how this goes. We will be in the hospital for an average of 3-4 days. While there they will run another MDR test and see what percentage of cancer is still remaining. Again, it needs to be below 0.01%. If not, the next step will be moving towards a bone marrow transplant. BUT....we have all decided we just aren't going that route. We're going to remain positive just as absolutely long as we can.

Induction Phase 1

The first month of treatment she was on steroids and weekly chemo treatments in SLC. The steroids were a BEAR and wiped Meg out. She was tired (and STARVING) all the time and her bones and whole body just ached. After she had chemo on Fridays she would be down for the count for the rest of the weekend. She'd start to perk up about Tuesday or Wednesday just in time for her to have chemo again on Friday. This was a heartbreaking month. It was devastating to see our usually busy, won't slow down kind of child so run down.

During this first month Meg also began losing her hair. I'd help her wash it in the tub and would have fingers full by the time we were done. One Monday night after it had thinned significantly and was looking pretty bad, she decided that she just wanted to shave it all off. My sister in law Heidi called a family friend Kaitee Banta, (her grandpa was Jay Banta who was Kendon's dad's best friend all growing up. Kendon played baseball for him, hunted with him, and Connor's middle name is Jay after him.)  and has alopecia.  She has not had hair since she was about two. She is now 15. She came over and talked to Meg about being bald and that different is cool and that bald is beautiful. She was such a blessing to us during this difficult thing to do. She gave us all such peace and hope that "it's just hair" and it will be okay. Kendon shaved Meg's head while we all say Taylor Swift's Shake it Off. It was heartbreaking and powerful all at the same time. But Kaitee was right, bald is beautiful and Meg really rocks it!

At the end of the first phase they ran another bone marrow biopsy to see how much residual disease she still had in her body. Her numbers should have been below 0.01%. The first phone call we received they said that her percent was at 8% but they couldn't imagine that was correct. We prayed that it wasn't. So, we had to go back to SLC on a week we were supposed to have off and redo the biopsy. 4 LONG days later the results came back and she was at 0.7%. Still not good enough. So, bumped again, now to VERY high risk. I didn't even ask what this means for her prognosis.

Minimal Disease Result (MDR)

After the first 8 days of treatment a Minimal Disease Result test was run. This test shows how much cancer is still present. The number expected/hoped for is less than 1%. Meg's results came back at 2.5%. This unfortunately means a few things: 1) her body was not respodning to the chemo like it should have been 2) she was moved from a standard risk patient to a high risk patient 3) additional/higher dose chemo 4) higher chance of recurrence 5) lower cure rate; down to about 80% instead of 90%. At this point we were still trying to process her diagnosis and felt a bit (lot) taken back by this news but still optimistic. If anyone can fight the fight....it's Megatron.

Cancer. Again.

I guess the "biggest" or most life changing event that has happened in our life recently is that our family is facing the battle of cancer AGAIN. I have been documenting this "journey" on our Instagram account but will continue to tell the story here. Here is the quick (not really) rundown version of our last 3 1/2 months. 

On Sunday, February 22nd, Meg (age 8) showed me some funny red spots that she had on her arms and legs. They looked like teeny tiny little bruises. I thought of those funny spots throughout the day and made me think of a few other weird symptoms Meg had been having over the past two weeks. I thought of a large persistent bruise on her shin that would heal and then come back. I remembered a time the week previous that Meg had come home from school and said, "Mom, I crashed in P.E. today." What she meant was, she was too tired to finish P.E. that day. After talking to Kendon he mentioned noticing that Meg hadn't eaten breakfast the last few days. Putting all these things together we decided that we'd better take her to the doctor. I scheduled an appointment for Tuesday after school and our doctor, Gary Sena, ran blood work.

On Wednesday afternoon at 4:45 Gary called and asked where I was. I told him that I was at home. He asked if Kendon was there or if I was alone. As soon as he asked me if I was alone I knew it wasn't good news. Gary told me that Meg's white blood cell count was abnormal and that we needed to head up to the E.R. as soon as Kendon got home. I know enough about cancer to know that an abnormal white blood cell count probably meant leukemia. I asked Gary if that was what he was implying and he said, "I'm so sorry. Yes." Gary is the doctor that discovered Sirri's cancer as well and my heart aches for that poor man having to deliver such heartbreaking news to one family twice. We love Gary so much.

Fifteen minutes later Kendon was home and off we went to the hospital. We've been living, eating, breathing, sleeping cancer ever since. We spent the next 7 hours at Madison Memorial hospital and at midnight we left for Primary Children's hospital. We arrived at 4 in the morning and got about 3 hours "sleep" (ha!) before the doctors started showing up and blasting us with information. My mom arrived that afternoon and as always it was such a blessing to have her there as a support. Teresa Codling stayed with Sirri and Connor Wednesday night and Thursday my dad, sister Cindy and her family arrived at our house to stay with them. What a HUGE blessing that was.

Friday Meg was admitted to surgery where they placed a port, did a bone marrow and spinal fluid biopsy and administered her first round of chemo directly into her spine. Her bone marrow and spinal fluid biopsy results came back in such a way that she was placed in the standard risk category. That is a good place to be. It put her survival rate at above 90% and risk of recurrence low. We felt very grateful for that.

We spent the next 2 days in the hospital learning a LOT (we should all have our honorary medical degree by now) getting chemo, roaming every hall of that hospital (you just can't slow Meg down) and preparing ourselves for the next 2 1/2 years of treatment. Tentative completion date of June 2017. On Monday night we were able to go home!

How Do You Sum Up 4 Years in 1 Post?

Like this, I guess....

•  In 2011 Brooke Miller and I bought Tavaci, a children's show choir, together. That was such a choice opportunity. I learned so much about life, music, myself, how to run a business etc. It was such a FUN opportunity. I loved teaching the children and having my own kids there as well. I've always thought life should be a musical and for a few years my life basically was! We sold the business to Amy Dawson in 2014 when Brooke and I were both offered  teaching positions.
• Summer 2012 Kendon took up running again and participated in a Ragnar and did a half marathon all in the month of June. He won first place for his age group and 17th overall at the half.
  
• December 2012 we got the sweetest Christmas present. Cindy had her first baby. A sweet little girl named Rosie Marcella.
• 2013 was a HUGE year for our family. We completely gutted and remodeled our home. The kids and I moved to Boise for the summer and Kendon stayed here and worked (his buns off)  on the house. Dave Sanderson was our general contractor and did an AMAZING and beautiful job. We are SO very happy in our "new" home. We documented the whole thing on Instagram and turned it into a book. 
• July 2013 Kim had TWIN babies. A boy named Miles and a girl named Adele. It was such a blessing to be in Boise the summer she had the babies. I was able to help out with her two older kids while she prepared to have the babies (Though she didn't need me. She's super woman. She even taught her spin class until she was like 36 week pregnant.) Then we got to spend a few weeks with the new babies before moving back to Rexburg. The summer of 2013 will go down in history as my favorite ever! Spending so much time with my sisters and all the cousins being together was the BEST EVER!
• In August of 2013 we had a 5 and 10 birthday party for Sirri. Five years CANCER FREE and ten years old! Oh, what a celebration and happy day it was to reach that five year mark!
• October 2013 I started working part time at Kershaw Intermediate as a Title 1 aide. 
• February 2013 My nephew Luke, Kim and Richard's son, was in a sledding accident and had to be in a speca cast for6 weeks. All the while Richard accepted and started a new job in Seattle and Kim was home with twin babies packing up a house on her own. See, Super woman!
• April 2014 I was hired full time as the new Achievement Specialist for both Central Elementary and Kershaw. My responsibilities include running the Title 1 program and facilitating the RTI (Response to Intervention) process at both schools. I LOVE my job! The transition from full time mom to working mom went much smoother than  I had hoped and expected. Don't get me wrong, I still live for the summer!
• Summer 2014 Sirri was in her first big production with Rexburg Community Theater. They did Seussical the Musical and she was a jungle animal. She had a lot of stage time and it was so fun to watch her in her element. She loves the stage and it loves her! 
• Winter 2015 Meg played basketball this year and was really good. Her coach wanted to know "where she learned to be so aggressive!" I guess that's what happens when you're the baby of the family. A couple months later at one of Connor's games a ref recognized her and said, "hey, I remember you! You're the girl who always stole the ball from the other team!"
• Spring 2015 Connor has really taken a liking to basketball and has played the last few seasons. This last season he had a fabulous group of boys on his team. They had a fabulous season, only losing one game. They played with the best team work of any young team I've ever watched! I was so proud to see the sportsmanship that Connor has. He always cheers his teammates on and works so hard. It's paying off as he's becoming quite a little baller.

Spending a day in the mountains before the kids and I loved to Boise. Summer 2013

Our finished home! Fall 2013

Back to the Blog

I recently read through some of our old blog posts and had such regret in my heart that I have not kept it up.  For the last few years I've been trying to document our life's "journey" on our Instagram account but some days I just have too many thoughts to fit an Instagram post. Our family has seen its fair share of trials and tribulations but we have also seen and felt the hand of the Lord and his tender mercies present in our lives and I'd like our family to be able look back to those memories and have them carry us through when life gets tough.

Family Pictures Fall 2013 * Picture taken by Shelli Chambers

Short and SASSY!

Meg got a new haircut recently. It is a little bit, "mini me," and I love it! So does everyone else. She is constantly getting compliments and I didn't think it was possible for her eyelashes to look any longer than they are, but the short hair has done the trick. She has the most darling, perfect features for a short do and it just fits her personality to a T. It just might fit her personality too well!

Kendon: "I'm thinking we might need to grow Meg's hair back out. Boy is she ever SASSY lately."

Me: "I know. Seriously. She is Miss Sassy Pants."

pause
pause (thinking of MY haircut and MY personality.)
pause

Me: Wait a minute.....Oh well, I guess if the shoe (or hair) fits, wear it!!!!