No Matter What

Cancer dialogue is different than regular verbiage. Gone are the days when I mindlessly used blanket phrases of comfort on someone like, “It’s going to be ok.” You can bet when I look into the eyes of someone with cancer now, I really think about the words I speak. Because there are so many kinds of cancer, and so many different stages and outcomes, the results of treatments are NOT the same for any two people. It’s very difficult to assure someone who has just been diagnosed- that “Everything will be fine.” Everyone has their own interpretation too. In the beginning stages of Jace’s cancer, when someone would say “It’s going to be ok” to me, I would think in my mind, “You don’t know that.” People would say to me, “Hang in there,” and I would bitterly think, “Hang in where?” …Because “OK” to me meant that Jace would miraculously be found cancer free…or he wouldn’t have to suffer…EVER. In my ignorance, my faith was based on the outcome *I* thought should come to pass. Maybe I shouldn’t admit to my gloomy thought process, but I’m being honest when I explain that I’ve learned a few things over the months about what comes out of my mouth and what I think in my mind. I’ve also had to repent that I didn’t have more faith in the Atonement and more hope for the PEACE it offers on this earth. In other words, I forgot to see the BIG picture- and I failed to see that life on this earth is just a small portion of the eternal realm.


The reality is, my faith has been tested, and I’ve been blessed with the testimony that everything IS going to be ok, NO MATTER WHAT. I have such a firm resolve that if we add that phrase to the end of every phrase of hope, we can allow the Savior to take over and make everything “OK.”

Jace only missed 4 and 1/2 days of school with chemo this time, and he is mostly enjoying regular life as a 7 year old. His legs aren’t quite as fast as he plays flag football, and his “juke” isn’t quite the same as it used to be, but we’ll take it! I silently said a prayer of thanks at his game last night, that Jace was on the field and doing something he loved. It didn't matter that we lost in OT, and it didn't matter that he missed a few flags. Jace was running, and that was huge. He was also smiling, with a head FULL of hair! It's funny how priorities change, right?

We’ve given away a few more cancer bags, which means we’ve made more friends who are fighting cancer. I find myself adding names to my personal prayers daily, and I feel so close to families dealing with the ugly disease. I get to donate blood today after school, and when Jace found out he said, “Mom! Are you going to be ok?” I think he remembers from the last time I donated, my pale skin, blue lips, and shaky hands! ha!  I told him if he can fight cancer, I can at least give up a little blood. He smiled and patted my hand. "I'll go with you," he said. I sure love that kid.

Besides, I can't worry.  Because, it WILL be ok…NO MATTER WHAT!:)

Training With Weights

Yep. It's that time again. In his dad's arms, my cute Jace is sleeping right now with a cold sweat and  body aches. Our Iron Man was under general anesthesia Wednesday morning by 7 AM to receive his Lumbar Puncture. [As a review, this means he received a chemo treatment into the spinal fluid (administered through his back), to reach the brain]. After his LP, we proceeded to Teton Oncology for him to receive the rest of his IV chemo through his port. We learned there that his WBC number is somewhat low; which I've come to learn means his daily oral chemo is just doing it's job. It's difficult for my heart not to freak out when I see the lab results and everything is flagged as L (low) or LL (really low!). But my brain (once in a while) kicks in and says, "It's ok Amy! This is what chemo is suppose to do!"  I'm just waiting for someone to invent chemo that only kills bad cells and not the good ones too. (Calling all brainiacs!)

Since Jace has been running around and appearing NOT sick, the common comment we hear (almost daily) is, "He's finished with treatments, right?"  We also hear, "If he's in remission, then why does he still have chemo treatments?" Because of the nature of Leukemia, he actually won't finish his chemotherapy for two more years. That's right, party people! We are all looking forward to the gathering we'll have in the fall of 2012 to celebrate "NO MO CHEMO!" right?? It's such a beautiful thought to be finished with chemo, that sometimes even *I* can push away the dreaded fear of Jace's cancer returning when the chemo stops...I'm actually not even going to go there tonight...because... Although Jace had to endure poison being pumped into his body, we were able to personally place TWO cancer bags that same day, and we are praying for our two new friends McKenzie and Dean.

I LOVED something Dr. Hancock said also. He explained that Jace will get so used to having low numbers, that it's like training with weights. In two years, when the chemo is finished (we hope forever!), the weights will be lifted, and he'll be stronger and faster than he ever thought possible. Sooo, training with weights is an interesting concept to me. Training AT ALL is sometimes a hardship. Who is with me on this one?? I can barely manage the 5 lb. trials that are thrown at me, let alone the hefty 50s or 100s.  As I watched Jace wake up so sick this morning, I wondered how I could just take his weights for an hour or two, so he could continue to sleep and not feel the nausea and discomfort chemo brings. But, we all know the truth; Jace wouldn't let me if I could. This Iron Man is training for something BIG!

Oh, and you might smile to know what Jace requested  for breakfast:  None other than....Olives.:) 

A NEW YEAR!

This morning was AMAZING. With the help of an incredible family and loving friends, we turned the anniversary of Jace’s diagnosis into a BEAUTIFUL DAY. Supplies came pouring in, and assembly line style we produced 15 bags to give to new cancer patients- similar to the one we received from a parent at Primary Children’s Hospital one year ago. THANK YOU everyone who supported this event and donated time and/or money. We NEVER could have done this without ALL of you.

The words to a favorite hymn keep running through my mind and taking me back to that place one year ago, when we didn’t know what the future brought for our incredible Jace!

“Fear not, I am with thee; oh, be not dismayed,

For I am thy God and will still give thee aid.

I’ll strengthen thee, help thee, and cause thee to stand,

Upheld by my righteous omnipotent hand.”

(September 13 or 14, 2009

 with 95% cancerous blood)

“When through the deep waters I call thee to go,

The rivers of sorrow shall not thee o’erflow

For I will be with thee, thy troubles to bless,

And sanctify to thee, the deepest distress.”

(In remission September 10, 2010

READY for two more years of chemotherapy)

Our rivers of sorrow have been replaced with rivers of gratitude today, and my heart is warm thinking of the goodness we have seen in others for the last year. From members of our families reaching out in small ways- to friends attending us; and even strangers becoming dear loved ones, we have grown and loved in ways unknown to us "pre-cancer." Thank you everyone for staying with us! It's been a year, and we still feel your love.

Jace and his cancer bud, Mark Steiner also wrote letters to put into the bags, and I took a picture of Jace’s letter. I think it's a perfect way to end this post and this year of cancer!

"Hope Now"

I can’t sleep this morning. My brain won’t stop. So many things are swirling around in it including the juggling act school has added to our world, and the “Cancer Service Project” we are doing on Saturday. Jace also has chemo next week, including an LP with general anesthesia. In addition to these details, I can’t believe it’s been A YEAR since our world changed. So, now because I can’t sleep, I’ve been reminiscing by reading the blog posts from last September, and for the first time, in a long time, I’m letting those blasted tears fall again. I’ve told some of you this, but until this summer, I couldn’t read BACK even one blog entry. The reality of Jace’s illness wouldn’t allow my heart to even think about yesterday. I had to look ahead- move ahead- survive the day…or the hour, whichever it took. But this morning I’ve been reading. Here are a few excerpts from the first posts in our cancer journey:


“Friday morning (9-11-09) Matt went to work, and I stayed home with Jace. Around 10 AM Jace decided he wanted to bath. Normally he spends an hour in the bath if I let him, and after three songs on his Primary CD, he was ready to get out. He was shaky and he had to sit down, wrapped in his blanket, on the toilet. He said, I’m so dizzy mom. I helped him comb his hair and brush his teeth, and I had to carry him back to the couch. He said he heard a hissing in his ears. He even said, “I don’t want to die, mom.” Kneeling in front of him I assured him he wasn’t going to die…”


“…I’m just looking at his file right now. I think you better bring him in again.” 

 “…We are driving to Salt Lake now. It is 8:03 PM. Matt and I take turns crying. Everyone is calling. Hayden has a scared look in his eyes, and Jace is finally asleep. He’s had blood drawn 5 times in the last 60 hours. He cried worse every time. The last time at 4:15, Matt and I were both crying with him…”

  “…Primary Children's Hospital: We are checked in, and it's not just a giant nightmare. It's almost 2 AM and they just came in after looking at the latest blood draw and said Jace needs more blood. His red blood cells aren't carrying enough oxygen to his major organs, and his heart rate is too high. They just took more blood, and they should have a positive match within a couple of hours. Jace is being such a sweetheart; when he saw my dripping tears while I listened to the doctor, he started rubbing my back…”

“…If you are reading this, please pray for Jace. Whatever form of positive faith and energy you can send our way will not go unrecognized.”

Wow, right? Did we really live through that??

I have a new favorite song.
It's called, "Hope Now" by Addison Road.
Some of the lyrics state:

If everything comes down to love,

Then just what am I afraid of?

When I call out Your name,

Something inside awakes in my soul

How quickly I forget I am Yours.

I am not my own.

I’ve been carried by You,

All my life.

Everything rides on HOPE now.

Everything rides on FAITH somehow.

When the world has broken me down.

Your love sets me Free...

The truth is, for the last entire year we HAVE been carried by our loving Heavenly Father and our Savior Jesus Christ. Thank you all for your continued prayers and support. Everything truly does ride on HOPE and FAITH now, and I am so grateful for these blessings in our lives.

So although this morning I’ve been a little tearful, I have to admit it feels really great to say ADIOS to the last year…to fear…and sadness… I am full of HOPE for the future and an undying FAITH in an atoning Redeemer.

We are moving on, CANCER! …and we’d prefer it if you DON’T follow us!

Two years of chemo left.
We can do it.

ONE YEAR Project

It's almost been one year....so stay tuned for a better post...but in the meantime, if you'd like to join our family with a small "project," check out my personal blog for information:  amyleighleatham.blogspot.com