I'm pretty sure the week we found out Ellie had cancer was much easier than this past week.  By Tuesday night I was done, I know as a mommy we aren't allowed to be "done" but I was.  After more tears and no direction, I took my yarn and my music into my room and placed myself in time out.  I went there because I felt so mad...not at anyone in particular, just mad.  I was to that pouting point where I was slamming things around and acting like a teenager.  During my time out I did my best not to think about cancer, or choices or anything except the hat I was trying to finish. After I had calmed down and finished my hat, I began to read, hoping for some type of words that were going to jump off the page and tell me where to go, or give me a clue as to what to do.  I got nothing.  I went to bed with another heavy heart and no set plan.  When you know there is cancer growing inside your child's head, everyday you don't have a plan and aren't treating it feels horrible.  The next morning in the shower, I was begging God to speak to me, trying to be quiet so he could talk...but as the thoughts continued to role through my head, I heard nothing.  So far all we knew was that whatever choice we made, I would be the one to go with her, and that we were going to have to pull Noah out of his school....again.  Feeling like mother of the year for once again making Noah change schools, but we are 40 minutes away from his school, which isn't a problem when I'm working, but since I won't be there, its a little bit harder.  I spent Wednesday at school, attempting to put as much down on paper as I could for my replacement.  That evening I managed to get 3 kids to church and fed with minimal meltdowns.  Both kids got to go to AWANAS....Ellie's first time, she liked it, even though she was a little upset at the fact she had food on her pants.  I'm not sure where this need to be a clean kid came from...my mom swears I couldn't stand being dirty as a kid either...I don't believe her :)  After a fun night at church, I decided I wasn't going to bring up anything about our current dilemma.  We got the kids to bed, and we spent the evening together watching TV...no talk about cancer.  That night I gave up.  I decided I was going to stop trying to figure this out on my own.  I was going to stop trying to come up with the answer to this puzzle. I later on was reminded that the women's bible study had a day of fasting on Wednesday...the day I gave it all up to the Lord, the first good day we'd had in a few days.

Thursday was a super busy day for me at school.  During my day I kept thinking back to that peace I felt on Sunday, when we first though about radiation.  Not that radiation makes me feel good, but I felt okay with our decision.  I realized as our week went on, and we desperately attempted to get information from the outside world and figure this out on our own, I felt worse and worse.  We were praying for guidance and wisdom...but we were then trying to find our own wisdom.  Richard and I finally decided that radiation was going to be our path. We realize that others may choose other paths...but for us, for many reasons, this is what we choose.  I don't really feel the need to explain our reasons, and at this point we aren't searching for what others have done, or any more information. We have searched...we have read the same 5 articles on Pineoblastoma, over and over (I joke, maybe there are 8 articles out there).

By Friday, I felt good, I felt peace.  I am not excited to be leaving my family again.  I am not looking forward to the conversation with Noah about school.  (editor's note, Noah took the news like a pro, no tears, hoping that when the reality of it sets in later this week, he will be okay).  I am not thrilled that I am now missing more of SG and Noah's lives.  But I know God is leading us down this road.  As the rest of our problems are starting to be solved...all I can do is smile.  I am starting to see just how God has planned this all out.  The people who have been brought into our lives...that we couldn't function without right now.  The doors that are opening once again are amazing.  I know that God had this planned before I was born, but I can now look back 5 years and know exactly why things have happened in our lives, that at the time caused me great stress, but were all a part of His grand plan. 

We got to spend yesterday with family and friends supporting cancer research.  This was the first event that Ellie has gotten to be a part of. 

 

 

Missing a few team members, but by far the best looking team around!  Our team raised over $3000 as of yesterday.  And as I learned yesterday, 100% of the proceeds go to children's cancer research.  They also announced yesterday that CureSearch is committing 5 million to research for the cancers that are so hard to treat....that's us!

 

So Ellie and I will be heading back to St. Jude sometime soon.  Ellie has been a tad cranky lately...we are pretty sure it is due to an increase in one of her meds...and being 2 years old.  Other than that she is like any other child, running, playing and fighting with her brother.  While I feel at peace with our choice, I still have moments of just tears.  Usually when I start to think to far into the future, when my mind goes past today. 

 

We've been asked again what people can do to help us.  Prayers are great right now, especially for Richard and I...as I know our hearts are heavy some days.  Also we have a team in an upcoming walk for St. Jude.  We would love for you to support our team.  Right now we have all we need, but there will always be a huge need at St. Jude.  By supporting our team, you will be helping St. Jude provide the amazing care they do.  You can donate by following this link Team Princess Strong

 

Romans 8:28-29 And we know that for those who love God all things work together for good, for those who are called according to his purpose. For those whom he foreknew he also predestined to be conformed to the image of his Son, in order that he might be the firstborn among many brothers.

Exodus 14:14 The Lord will fight for you; you need only to be still.

 

Prayers, Praise and Pink

~Carly

 

Decisions

Flights weren't so bad....MRI day was a breeze, besides the trouble getting Ellie's port to draw blood. In fact I felt so good...I had just posted to Facebook about how great our day had been, especially when you give all your cares to God.  Within the hour, I started to realize my phone wasn't ringing...her clinic wasn't calling me....they have always called after her MRI's.  We headed out to dinner...right behind the same people in the "God's Got This" shirts that we had followed around all day.  It made me giggle once I realized that they were perfectly placed in front of me all day.  We sat at dinner, with my phone right beside me...thinking maybe they were just working late, and the Dr. was going to call me any moment....she didn't.  Every time my mind started to run away with thoughts, I was able to silence it....but it took a lot of effort. After we got back to the Grizzly House, I checked Ellie schedule again, and there, added on to the end was a consultation with radiation. My heart sank. While I didn't know the reason for the added appointment, I had a pretty good idea of why we were going there again.  I called Richard, attempting not to panic. He said all the amazing things he always says, and we headed to bed. Around midnight mom's phone rang...it was Richard. He was flying down in the morning. I tried not to ask the million questions racing through my head, but ended up calling him back anyway.  Thank The Lord we have the friends and family we do that Richard can hop on a plane and not have to worry about our other children being taken care of. I attempted to sleep the rest of the night.

Thursday started with Richard's flight delayed, and a two hour long psych evaluation...ever seen a two year old get a psych eval...not sure I would recommend it for fun, but it is pretty entertaining...especially once she figured out going to the bathroom got you out of doing his stuff.  P.S.  if your two year old knows what edible means...props to you!

We made it through all her other appointments, Richard finally made it to us and we headed to E Clinic. She was so tired, but loved snuggling with Daddy. Once we were called back, we didn't even make it to an exam room....we were escorted to the "viewing room" and there sat Dr. Wright with Ellie's MRI pictures. Funny part is, the thing I've always worried about, her spine and spinal fluid are still clear.  They found some new lesions in her brain. They are tiny, and the blessing is they could have been easily missed...there was only one shot that really made them take a closer look. So now we are left with choices.  Ellie was supposed to start on oral chemo, but we know doing that will not control or get rid of these new spots. We can try a different type of chemo, that would be another inpatient chemo. We can do it here, or possibly at home. This may or may not work. If she were a few months older the protocol would be radiation. We are still going to be given the option of radiation...but with serious side effects.

I tried to google the new chemos yesterday, and it was doing me no good, so I started reading the bible, where I had left off yesterday (when I was still on cloud 9)... Here's what I found...

Against all hope, Abraham in hope believed and so became the father of many nations, just as it had been said to him, “So shall your offspring be.” Without weakening in his faith, he faced the fact that his body was as good as dead—since he was about a hundred years old—and that Sarah’s womb was also dead. Yet he did not waver through unbelief regarding the promise of God, but was strengthened in his faith and gave glory to God, being fully persuaded that God had power to do what he had promised. (Romans 4:17-21 NIV)

I kinda felt lost for a moment yesterday. Did I not hear Him right? Was it really God speaking to me, or did I make it up? I was so afraid to share what I heard, and I did and now I'm wrong! Stop there Carly...this isn't over, God didn't say I will heal her during the month of September, or your miracle will come this year. He didn't really give me specifics, just words.  And now I cannot let my belief waiver, and fully believe He has the power to do what he had promised.  I'm still scared and we have no idea how to make this decision, because there is no guarantee anything will work better than the other. Now we have to pray for God's guidance, to stay within His will and make the best choice for us all. 

Cut to radiation waiting room....by far the best toy room around....at least for Ellie, baby dolls, shopping carts, strollers and a toy kitchen, nothing is locked up. She looks so little in here, yet the toys are completely appropriate for her....cut to exam room, super nice people...all commenting on how well she looks, moves and talks. She happily sits on the floor playing with a million toys, without a clue as to what is going on. 3 doctors and 1 nurse all in there to talk about her. To reassure us that this isn't something else on the scan, there are in fact new growths.  To explain options...none guaranteed, none better than the other, none that a doctor will tell us is our best option. And she sits and plays. Part of me for a second was mad...felt this was so unfair.  Here is this happy kid, full of life, who will now be fighting for hers.  I stopped myself...I couldn't be mad...and really who would it be fair for cancer to attack. I can't be mad because God has held our hands the entire time, he has opened every door, surrounded us by amazing people.

So we don't know where we go from here.  We have lots of things to think about and options to weigh.  I have worried about this moment because of so many of you.  So many of you have emailed me or facebooked me to say how our story has renewed your faith or made it stronger.  I don't want anyone to waiver or be shaken or doubt God because of this.  No, it's not the plan I thought would happen, but I will not question what He said to me. One way or another He will heal her.  

I firmly believe God put you all in our lives for a reason.  In this moment it would be really easy to lose hope, get angry, and question it all....but I have you all.  In my head, I think of you all, I think it's my responsibility as a believer, to live that life all the time. For you all to see...that we are not shaken, we still trust God to carry us though this.  That duty to you all, keeps me in the right frame of mind...keeps my mind on the Lord's track and not my own.  On the flight home, I was reading about how important it is for others to see you worship...and really worship.  People are watching, and the more they see you enjoying something, the more curious they will be.  Kind of the same way I feel about our situation, the more people who see us still worshiping, still thanking Him, the more curious they may be. "He put a new song in my mouth, a song of praise to our God. Many people will see this and worship him. Then they will trust the Lord." Ps. 40:3.

And not only that, but we also glory in tribulations, knowing that tribulation produces perseverance; and perseverance, character; and character, hope. Romans 5:3-4

So we again ask for prayer.  That we will have the wisdom to know the best path for us.  That we will continue to focus on today, and enjoy today. God already has this all planned out, its our job to worship Him in this moment and trust that he will carry us through.

 

Lots of Prayers, Praise and Pink

~Carly

Invincible

Where do we even begin?  Its been so long since I've written anything, an entire month. Not a whole lot has happened in this past month...which is a really good thing!  Or I take that back...a lot has happened, life has happened. I have returned to work.  I haven't been at work since February 12th, that was the day Richard took Ellie to the ER and they discovered the mass in her brain, they day of her first surgery, the day our lives were forever changed.  I was very anxious coming back to work, of course I was welcomed with open arms and lots of hugs, but the reality that life was moving on, was a very weird feeling to deal with.  So many said "I wasn't sure if you'd be back" or they were shocked to see me.  This really got me thinking maybe I made the wrong choice, maybe I should have stayed home.  I didn't feel like the Lord had led me in that direction, going back to work felt like the right thing to do...but it made me start to question our choice.  I know better, I know not to let the information of the world sway me...but it happened!

Noah started Kindergarten! He loves it, loves having school rules, recess, and chocolate milk at school lunch!

Another reminder that life if moving on...we no longer live in a hospital, we are no longer hundreds of miles apart from each other, we are no longer on harsh chemo meds, we no longer have to talk via iPads.  As exciting as you think this all might be, and as much as I've longed for this moment, I'm having a hard time actually living it.

A week into the new school year and Ellie got sick.  For the first time since February 12th, Ellie had a fever.  I've said before it has been a miracle that we have been able to keep her healthy this whole time, that even with a weakened immune system, this little girl never got sick...we all started to feel she was invincible.  We had to go in through the ER, because like any other child...she didn't get sick during the middle of the day, it was Saturday night.   Once we were finally put into a room in the ER, all the memories came flooding back in, we were in the same room as our previous trips, however this time we had a happy, bubbly kid with us, not the unmoving, non talking, undiagnosed child we came in with 7 months ago. Kind of a bittersweet moment.

 

 We all knew we were going to be admitted, it was just a matter of time.  Even thought it was the middle of the night, she was happy, eating popsicles and smiling for the most part!

 

Upon arriving in our room, we were met by the same nurse that took care of us our last few days when Ellie was first diagnosed.  It was so nice to see her sweet smiling face when we arrived.  I remembered from our previous stay that she was someone who loved the Lord, so it was nice to be in her hands! Within a few days, Ellie tested positive for C-Diff.  Basically the antibiotics she takes on a regular basis also kills off the good bacteria in her stomach.  The bad bacteria takes over and makes you sick.  It was a pretty yucky hospital stay with lots of diaper changes...but we survived!  This illness wasn't caught from anyone else...so I will still say that its a miracle we've kept her from catching any illnesses! Since our little hospital visit, Ellie has continued to recover nicely...her numbers all returned to beautiful within a few days, and we have been doctor visit free for a few days.

 

We got to enjoy Labor Day like most people do, with family!  I was so excited to get to go to a cook out and not have to stress any part of it.  The kids had a blast playing with cousins, and I had a blast enjoying my family, of course Daddy had to work, so we missed him lots! 

 

We were also blessed by a group called Pink Heals.  These wonderful people had attempted to visit us when we were still in Memphis, but we couldn't coordinate our schedules.  But the Pink Heals didn't give up on us, they were driving through our little town on their tour and asked if they could come by and see us.  We didn't tell the kids, so they just thought lots of friends and family were coming over.  It wasn't until the big trucks came rolling down our drive way that the excitement kicked in.  All Ellie could exclaim was "you see that!" or "check that out".  She giggled with pure glee...(I was ready to jump out of my skin too)  Its not every day people you don't know, go out of their way to make your child's day.  They also came prepared with toys for Noah and SG.  Their hearts were just as big as their trucks.

 

We are preparing to head back to Memphis next week.  Ellie will have her next MRI and spinal tap.  She will also have a ton of follow up appointments with her PT, OT, psych, eye dr, regular doctor and have her hearing screened again.  I'm going with her this time, along with Nana.  I haven't flown in years, so I'm very thankful to have my mom with me to help me navigate airports. 

 

I continue to struggle with scan anxiety (scan-iety).  I know what the Lord has told me about Ellie, I know what He said...but I still worry.  This song came on this morning, and made me smile...

 

"Jesus answered, 'I am the way and the truth and the life. No one comes to the Father except through me." John 14:6 

 

I know the truth, I have heard the truth...struggling to continually remember the truth.  I asked Richard how he remains so calm, how he doesn't begin to stress. He just smiled at me and said "remember our promise, just today." I asked him what he thought was going to happen to Ellie, his answer "she's here to stay"....when I asked how he knew that, his response was "she's in her bed right now."  At first I thought he was being smart about it, but I soon realized what he meant.  She is here today and we have vowed to stay in today.  Time spent worrying about tomorrow, is no good, and it goes against what we promised "and when I promise something, I never ever break that promise" (we've watched Tangled quite a few times this week!)

 

Music is what has been carrying me through every day.  It helps makes those long car ride to and from work so much easier.  There have been so many great song that speak straight to my heart and lift me up.  One more for you.

So my vow for the rest of this week (ok maybe I should just say today) is to not let this world shake me.  To know I'm not invincible, and I will stumble, but God will always pick me back up and surround me with people who will help get me back on my feet. I promise to remember His truth, and praise Him every day for it.  Prayers that I can stay "unshaken" would be appreciated! 

 

Prayers, Praise and Pink

~Carly