Sunday, June 28, 2015

Morphological Remission-Explained!

We finally received the results of Meg's last MRD (minimal result disease) test.  It came back negative and that is exactly what we needed to hear! You'll remember that Meg "failed" this test two times prior so this was a really big deal that the results of this one came back in our favor. As a reminder, test one was on day 8 of treatment and the expectation was that her leukemia would be in remission already (which blows my mind!) with less than 1% of leukemia cells in her body. She had 2.5%. We were bumped from a standard risk patient to a high risk one. On day 29,the percent we were shooting for was 0.01% or less. She was at .68% bumping us yet again, this time to very high risk. The third and most recent test she again needed to be at 0.01% or less or we would be looking at a bone marrow transplant. Thankfully, the text above, giving us the good news, was sent to us on Thursday, by Megs' head nurse, Carrie, and Meg did it! The chemo is FINALLY working like it should, there is 0.01% or less of leukemia cells in her body, putting her in remission and we are ever so grateful!

Since announcing the results we have had many people misunderstand the news and think, "she's in remission. She's done!" WE ONLY WISH! Even though Meg is "in remission," we still have two years of treatment to go and Meg is still considered a very high risk patient. That will never change.  "Well, why is that? If she's in remission, why does she still have treatment and why is she still considered very high risk?" people want to know. I'll do my best to explain. (With a little help from some "professionals.")


"At this point, the patient is judged to be in clinical and hematologic remission, although the term "remission," much loved by hematologists and patients, refers only to a somewhat arbitrary point toward one end of a continuum of leukemic-cell numbers."

Translation of the above:  When you consider that we have millions of cells in our body, even with 0.01% or less of them being leukemia, that's still leukemia cells. And the problem with cancerous cells is this.....THEY DIVIDE which means they MULTIPLY. So, if even one miniscule little leukemia cell is left unchecked in Meg's body it will become two. Which will become 4. Which will become 8. Which will get the picture. So, chemo must go on!


"Although doctors know that clinical remission does not mean that the disease is eliminated, the term still has value as a prognostic factor in treatment. For example, careful studies have determined that patients that do not go into clinical remission by day 14 of treatment are at higher risk for relapse, and therefore these patients, called "slow early responders", enter on a more intense treatment regimen. Rapid early responders are able to complete a less intense treatment protocol."

Translation of the above:  Because Meg's leukemia did not go into remission by day 8, which is the expectation or even by day 29 of treatment she was placed in the very high risk category. This does put her at a higher risk of recurrence and therefore they continue to leave her on the very high risk treatment plan. She will continue on this plan for the entirety of treatment. Once you're very high risk you never get to go back.

I hesitated to write this because I know it kind of sounds like a DEBBIE DOWNER post! But, this is the truth of it and I wanted to be able to clear up any misconceptions. But please don't misunderstand me or this post and please know, we are SO VERY GRATEFUL that even though it took some time, things have turned around, the chemo is working, Meg is still in amazing spirits and feeling great, and we recognize the hand of the Lord in our life everyday! Thank you for your prayers. They helped us get this miracle that we needed. That's truly what it is. A miracle.

Friday, June 19, 2015

Phase 3 Begins

After two weeks of not making counts, (and not being able to start chemo) we were all feeling really ready to just get this show on the road. Meg was scheduled for a CBC (complete blood count) on Thursday to see where we were at. Week one her ANC (count that represents her immunity) was completely bottomed out at 200. The next week 300. So, I was really nervous that at that rate it'd be another month before we made it to the required magic number...750. Wednesday night I slept terrible. I kept dreaming that her ANC came in at 600 and I was begging our doctor to please just let us start. So, you can imagine my complete surprise when her ANC came back at a whopping 1200! It's like Heavenly Father was saying, "I'll see your 600 ANNNNND, I'll double it!" Once again, I'm reminded that Heavenly Father is in the details and He is mindful of me, Meg and our family.

So, because we made counts, at 5:30 this morning Meg and I were off to Salt Lake City. We arrived at 9:30. Checked in at clinic to have her port accessed and then headed to RTU (Rapid Treatment Unit) for her bone marrow aspirate and lumbar puncture chemo. We should receive the results of the aspirate middle of next week. This is the big test that will tell us if she still has residual disease. We are praying, praying, praying that it comes back 100% clear. (Reminder...if it doesn't, we're looking at bone marrow transplant. So, we'll accept your offers to pray, pray, pray too!)

After making a quick detour to the cafeteria for our traditional Friday chips and salsa (it's delicious and makes Friday's at Primary's just a titch more bearable!) we headed up to the unit to get checked in and settled for the next few days.

It's now 10:00 p.m. And Meg's hooked up to the most HUGANGOUS bag of chemo you've ever seen and trying really hard to keep her eyes open to finish, Diary of a Wimpy Kid, the movie. She's worn out from our early start and a busy busy day! You'd think being in a hospital would be lots of sitting around and taking it easy. Not when you're in the hospital with Meg! We played for a few hours in the Forever Young playroom, made 2 duct tape wallets, 3 batches of silly putty and walked lots of halls of the hospital.

Meg's responding to the chemo really well so far. She's had an only "okay" appetite but that's fairly normal for Meg. I'm guessing and hoping that she's going to sail through this treatment like she has all the others. The hardest part will be the requirement that she go to the bathroom every two hours minimum, even through the night, the whole time we are here. I swear nurses love to wake their patients! Sheesh! So, we'll probably come home more exhausted than we left but that's okay. It'll be kind of like having a newborn again and we survived those years, we'll survive this too!

Thanks for your prayers.


Wednesday, June 10, 2015

I am Mindful of You

Last week after Meg didn't make counts I was so angry.

 We wanted to start treatment for a few reasons. This phase she will be admitted every other Friday. So, if she started last week she'd be home and able to attend Relay for Life this weekend, her favorite nurse, Britt, works every other weekend and would be there the same weekends as us, and we'd be in town for Sirri's play at the end of the month. Not to mention we really just want to get this show on the road. The sooner you start, the sooner you're done!

Meg had been praying her little heart out for two weeks that she'd make count and I was praying MY heart out  that a deserving little girl's prayers would be answered. So, when they weren't I was mad. I felt frustrated and upset and confused. Why do we even pray if Heavenly Father's will is just going to happen anyway? I know that His plan is always best for us and He knows what we need so why pray? I'll just let him do His thing.

I was angry for two days and on Sunday decided it was time to let it go but I knew I'd need help. So, I made it a matter of fasting. I knew it was what I needed to do so I reluctantly got on my knees and did what I didn't want to do. I prayed.

As I pored out my heart and prayed about my frustrations and questions a very distinct thought came to my mind:


Those five words reminded me in that instant that I have always had a testimony that my Heavenly Father knows me personally and He loves me. This testimony has carried me through many hard times. There are many things that I don't understand and plenty of questions that sometimes confuse my mind, but this I know. My Heavenly Father truly is mindful of me.

I went to church and attended my sister in law's Sunday School class. I couldn't believe it when she began a very beautiful and touching lesson about prayer. Some of the things she said and taught gave me a little more insight into the questions I had prayed about just that morning. Heavenly Father was answering my prayers in a way that I could not deny.

After Sunday School, Relief Society was about to begin and Sister Choffin began passing out little slips of paper with short phrases on them. She passed out a total of 17 of them to various women and she'd have us read them as part of her lesson. She came towards me and handed me my piece of paper. I graciously accepted it, looked down to read it and could not believe my eyes. My slip of paper had only five words on it:


I still don't perfectly understand prayer. I still wonder why I can't just let Heavenly Father do His "thing." I'm still bummed out that it didn't work out for us to go last week. I'm still a little frustrated that my sweet 8 year old's prayers weren't answered (the way we thought they should be anyway.) But this I know. Heavenly Father knows me. He loves me and He is mindful of me. And for now, that is enough.

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'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!