Today is our first set of scans after finishing treatment. She'll be having a full body nuclear bone scan,  MRI of the pelvis, and CT of the chest. Because of her age, she'll have to be put under anesthesia during all of these. The hospital does an amazing job at scheduling, so these will all be back to back to minimize how long she's under anesthesia and to make it as smooth as possible.

Unfortunately the whole process of going under anesthesia still really scares Hazel and as the nurse carries her away, she cries and screams. I've gotten so used to her not being scared anymore, as she knows the routine of blood draws, vital signs, appointments, etc and handles them like a little champ. It's a blessing, but also kind of sad to my mama heart that she's gotten used to these things. I hate that she's immune to it. I feel like we've stolen part of her childhood. So when she acts like any child and gets scared with routine hospital procedures she's unfamiliar with, in a way, I'm happy to see a normal child reaction, but it breaks my heart all over.
 
We've been talking about being done with chemo, but I'm hoping her brain can handle that we still have frequent lab draws, appointments, & scans to follow up at first. I wish I could tell her we're all done going to the hospital all together, but we're not.

In a way, I can already tell that this post-treatment time period will be harder. It's going to be hard to keep living life, but with a new routine; a routine without chemo feels like we're not doing anything. It's scary to think that we can be enjoying living life with our real-Hazel, the one not affected by the chemo, and then suddenly be blindsided when scans come along. Scans will be every 3 months for at least the first year with even more frequent labs. Will we be a wreck every 3 months? Will it be too long between hospital procedures that Hazel will be even more freaked out? Only time will tell. But for now, I continue to look to God for peace and comfort knowing he's in control. Comfort in knowing God knows the plans he has for Hazel and he loves her infinitely more than I humanly can. And in that, I find peace.
 
Philippians 4: 6-7 "Rejoice in the Lord always.  I will say it again: Rejoice! Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God."

Jeremiah 29:11 "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future."

Grateful:
- That Hazel has been feeling good and having lots of energy and personality 
- That she continues to be optimistic, funny, spunky, energetic and full of sass!
- That she's been asking for food and saying she's hungry (still not eating much, but the interest is increasing!)

Prayer Requests:
- For CLEAR scans today!!
- That Hazel will handle the anesthesia well
- For peace and comfort today while we wait for her

At the very beginning of our journey, we spoke of our hope. We had and will always have, HOPE for Hazel. Hope that she will pull through this time in life, cancer-free. Hope that her scars be minimal. Hope that the cancer never returns. Hope that she lives a long, healthy life. Hope that her body have minimal side effects from chemo. Hope that she'll be able to bear children if she desires. Hope that this diagnosis and it's life-altering effects don't define her or slow her down. Hope that she'll be stronger on the other side of the bell. And most of all, Hope that she embraces her story and uses it to lead people to Christ.

People have commented to me about my faith and hope through this journey. Well I'm here to tell you that this level & intensity of hope isn't easy. It's not our human nature to be optimistic in the face of such a diagnosis as the big C, especially when it's affecting your child. My hope doesn't come because I am an eternal optimist, in fact if anything, because of my fearful nature, I am more pessimistic in these type of situations. My hope comes from one place, one person.....God.

God promises us hope of an eternal life with Him if we turn from sin, accept his free gift of salvation, and follow Him. I know that He created Hazel in his image and that she's beautiful in his eyes. He made her and knew this would be part of her story. But in all things we are to glorify him and trust in his plan for our life, even the life of my dear baby. It's hard to imagine, but he loves her infinitely more than we do as her parents. How that's possible is inconceivable to my human brain, but I know it's true. He is the great physician and there's no doctor, treatment, or diagnosis that can stop him from seeing his will through. That almighty God, the maker of all things, the one who knows all, created and loves my Hazel more than me. So it is in Him that I put my trust. No matter how hard this road has been, I know that God is in control, today and for all of our days. It is in Him that we find Hope: hope for our earthly days, but even more important, hope for our eternity- an eternity spent with Him.

Recently Ryan and I were able to escape together to a water lantern festival in Boise. It's a rare occasion these days that we get out alone, but I'm so glad we did this night. It was both of our first times going and so we didn't know what to expect. A lot of people there were making lanterns in honor of lost loved ones, but others wrote of their hopes and dreams, or their love and dedication to Christ. Before the lanterns were set to release on the water, there was a time dedicated to those who wanted to share about their lanterns. Well if you know me, you know I don't like to bring attention to myself, especially through public speaking. As I sat there finishing up my lantern and listening to stories (mostly kids sharing up to this point), I felt led to share my lantern. As soon as we were given the instructions to decorate the four sides of our lantern, I knew my lantern would be dedicated to Hazel. It's been a mentally, physically, and emotionally excruciating 9 months battling for our little girl's life, but the end is in sight! I knew what I wanted to put down on that lantern. I wanted to fill that lantern with hope and I wanted to be able to release it on the water and watch it float away. I wanted to let go of all the tension, heartache, worries, and stress that these last months have brought. Not to say there won't be more moments of all those things in the future (especially for the next 5 years), but it's finally time that I can exhale. We're almost there.... only 2 rounds left!

So as I stood on that stage and tried to quickly tell our story, through a nervous voice, I pray our story of hope landed on just one person's ears and changed their outlook and faith in life.
Ryan and I were sitting near the water's edge where people assembled to release their lanterns. As we watched the crowds come and go, waiting for a perfect time that we could go up and quietly release our lanterns, two separate women tapped me on the shoulder and asked for Hazel's name to include in their prayers and to pass along encouragement to us. They may have been nervous approaching a stranger, but I'm so glad they did. Their courage really touched me and fueled my hope.

As I watched our lanterns drift off toward all the others, I noticed something. When I set my lantern in the water, I faced the "Hope for Hazel" side towards me. But with the current, my lantern turned, and now it was the cross side facing me. It never turned again until it was out of sight. There it sat, on its own trajectory and not near any other lantern, and the cross glowed and reflected off the water for me to see. I felt it was a reminder from God that he's in control. He's got me, he's got Ryan, but more importantly, he's got Hazel. So I gladly continue to turn my gaze to heaven, to the one and only God, who supplies all of our hope.

Romans 5:3-5 "Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God's love has been poured out into our hearts through the Holy Spirit, who has been given to us."

Romans 15:13 "May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit."

Psalm 62:5-6 "Yes, my soul, find rest in God; my hope comes from him. Truly he is my rock and my salvation; he is my fortress, I will not be shaken."

Since our last update, we've had 2 more rounds of chemo, bringing the total down to left!!! I almost can't believe it. I've been seeing the light at the end of the tunnel for a while now, but 4?? It feels so obtainable, so surreal. Back in December when they sat us down and laid out the treatment plan, we had NO idea what that really meant. Hearing the plan felt like we were being forced to drink from a fire hydrant. It came with the immediate overwhelming feeling, similar to reading through the syllabus on the first day of a college class. It seems impossible. The anxiety that it produces makes you freeze, not able to comprehend what you're hearing.

How can we do this with our work schedules? Will I still be able to work? But then how will we afford normal life on top of medical bills? Oh no, what about insurance? We'll loose it if I have to quit.

What about the other kids and childcare? How will we keep her healthy when our other kids are still bringing in germs and she's teething and putting dirty toys in her mouth?

What about family? Can we see them? Wait, we have to, they're our helpers. But what if one of them gets sick, gives it to our other kids, and they give it to Hazel? How do we continue the next year in a bubble? There's Covid, RSV, influenza - all of which are scary for normal kids with functioning immune systems. But how will Hazel handle illness while she's so compromised? She can't get sick and her surgery be delayed. We're on a tight schedule with no room for added illness & delays in treatment. We have to stay right on schedule so the chemo works. We want EVERY cancer cell destroyed forever!

Then there's rules you have to immediately start following like what she can and can't eat. How to properly wash and prepare fruits and vegetables.

No fresh flowers in the house.
No crowds.
Watch for fevers.
Report any and all changes in-
Energy
Appetite
Nausea
Fatigue
Bleeding
Rashes
Pain
Mouth sores
Mobility
Sleep
Breathing
Pees or poos....

But how will I know? She can't talk or tell me she's nauseous or in pain. She doesn't willingly open her mouth to check for sores. I don't even know what these sores would look like. I don't even understand everything, how can I expect her to at 17 months old?

These are all very real questions, ones that I myself thought of within minutes after the diagnosis. But it's amazing how you figure it out. You become more in tune with your child than I ever knew possible. I now know when her counts are dropping. I know when she has a fever. I know when she's feeling nauseous. I know the routines and little nuances she prefers. I understand what she's saying through the tears of frustration and discomfort. It's like learning a baby's different cries, just more possibilities of what could be going on. When you spend 12 hours a day (sometimes 24 hrs a day while in the hospital) with someone, your only choice is to learn one another. I can count on one hand how often I've left Hazel's side for more than an occasional 15 min errand these last 8 months. It's exhausting, but honoring and humbling too. It's hard to provide for all 3 kids when they all want me. Hazel needs me for most things right now.... from getting her up, changing her diapers, managing her tube feedings, giving & tracking all medications and their doses, to then all the small, everyday things. Even beloved Daddy won't do a lot of the time. When her counts are bad, she has zero tolerance or patience for normal things. There's a lot of crying & whining. Immediate tears and frustration when I don't understand what she's saying. She gets jealous of the other kids on my lap, because I'm HER mommy.

These are all things that we can work on in time, but for now, I can only give her love and grace. She needs me. My sister reminded me, I'm her safe spot right now. I've been there for and with her through everything scary or unknown she's experienced for the last 8 months. When she's scared, I'm there to talk her through it, hold her hand, calm her down, wipe her tears, take care of her needs, and most importantly, be her voice. It's an honor to be the most important person in someone's life. A life that is hard, painful, frustrating, and scary.

All of that may sound daunting and depressing, and while yes, these have been the hardest months of our lives, I can't help but look back at previous thoughts and prayer requests and see how God has provided.... especially in the darkest days.

I have a few distinct memories with such specific prayer requests that I can now see their answers.

Before surgery, I had Googled the surgical procedure Hazel would be undergoing to try and see what kind of scar she would have on her hip. I saw gruesome pictures of a huge T-shaped scar around the hip and down the outside of the thigh. I remember immediately feeling sad. Sad that Hazel's skin would forever be altered. I feared how I would help her embrace her scars during those awkward junior high and high school years when you're your own best critic. The night before surgery, I was giving Hazel a bath in the hotel, and while Ryan was unloading the car, I silently cried as I took photos of Hazel's hip and legs and took video of her walking. I thought she'd come out scarred up on her hip and with her leg upwards of 4-5 inches shorter. I thought I'd never see her walk by herself without a crutch or cane. I feared her being bullied at school for her differences in appearance and gait. I know it's just physical changes, but the world so emphasizes outward appearance that I didn't want her to struggle more than most.
Here we are, 4.5 months later and I can see now, those fears were not of God. He knew the outcome, yet I doubted. Hazel does have scars, but they're so much more discreet than I expected. Her hip scar doesn't extend down her thigh, and the surgeon made the most beautiful incision - it follows the curve of her hip and tucks perfectly into the natural crease. At this point, it doesn't even catch your eye. Our new primary oncologist looked at it last week and excitedly said, "that's it?!" It's healed so so well! And while yes she does have a scar on her lower leg that I didn't expect, it too is healing so well and the redness of the scar will fade over time. In fact, I'm grateful for that scar, because it's a reminder that her surgery was "best case scenario" with the placement of the graft. And as for her walking - that's a whole miracle in and of itself (don't miss the video below)! She's walking independently with no need for a walker! She only has about a 1 inch leg discrepancy at most but the surgeon thought it wouldn't progress and get worse at this point. This does give her a slight limp that lessens the faster she moves. It's most noticeable when she first gets up from sitting or sleeping for long periods, or as she gets more tired. There may be a slight shoe lift in our future if the limp causes any orthopedic concerns, but for now, we and the surgeon are so happy and pleased with her progress!
I also remember two other instances before surgery where I thought to myself, "remember this moment, you'll never see it again." One, she was walking in fake princess heals around the kitchen and living room. Hearing the clomping rhythm with each step made the tears fall. "You can't put shoe lifts on dress up shoes" was my immediate thought.

The second memory, again before surgery, was of watching Hazel and her sister run behind and through the closet at bedtime. Though they were supposed to be calming down for their bedtime story, I let the naughtiness continue, as once again I just sat there and cried, again internally uttering the words, "remember this moment, you'll never see it again."
Well I am here to tell you today, I was wrong. Once again, those fears and thoughts were not of God. He knew the outcome. I have seen Hazel do both of these things multiple times since surgery! The clomping of the princess heals around the house is like music to my ears. And let me tell you, that girl is determined. Not only being a new walker again, but then adding a shoe with a heal, and she's up for the challenge. She topples over more than before, but each time she gets up, slides those toes back in the oversized heals, and off she goes again!

I know in our last post at the end of June, right after that scary fever admission with the positive blood culture, I said I was ready to have our Hazel back; ready to have her act like a normal 2 year old and tell me "no" and run in the opposite direction. We've had quite a little run of that sassy Hazel lately, and I'm happy to report she's done this exact thing several times! She's practicing how to walk faster and faster with the ultimate goal of running, so when she speed walks away from me, though sometimes frustrating, I'm happy to chase her!

Another answered prayer request that we've been praying all along, is that if Hazel contracted Covid, she would be able to fight off the virus with no problem, even with her compromised immune system. I knew we'd probably eventually get it during treatment, but we had managed to dodge the bullet before, so maybe not. Well over the July 4th holiday weekend, we found out we'd been exposed, and Hazel, myself, and my dad all tested positive. I'm SO happy to report that Hazel crushed Covid! The day I tested her at home, she had a temp of 99.6°, which raised my suspicion as it wasn't a normal time in her chemo cycle for fevers. Other than the temperature for a brief period that morning, she was completely asymptomatic! She may have had a longer nap the next day, but that was it! It hit her at the perfect time in the chemo cycle when her counts hadn't yet dropped. We're definitely praising God for his provision!
Through all these ups and downs, good days and bad days, it can be hard to know how to parent her. She is still 2, she still throws unnecessary tantrums, she still is naughty with toys and siblings.... but then there's this extra variable I have to consider.... she also has cancer. It's a hard line to walk. I still have to parent her. I still have to discipline her. I don't want her growing up always getting her way or thinking it's ok to steal toys or hit her siblings. But the line between obedience and grace can be very gray some days. Parenting 3 little kids is hard enough. But parenting a child with cancer messes with your mama heart. At the end of the day, I try to fix wrong behaviors and make sure everyone's safe, but we're surviving on just giving lots of love and maybe too much grace at times (for all the kids). I don't have my mom here to ask how she would have done it, but I remember her telling me lots, "if you have to choose between rules and grace, always choose grace."

Deuteronomy 31:8 "It is the Lord who goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed."

Psalm 73:26 "My flesh and my heart may fail, but God is the strength of my heart and my portion forever."

Philippians 4:6-7 "Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."

John 14:27 "Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid."

Grateful:

• That we can count the number of chemo rounds left on 1 hand!
• That we had so much help navigating all of our questions- doctors, nurses, dieticians, social workers, financial advocates, family, employers, insurance companies, etc
• That Hazel did so well with Covid
• Again, that surgery was "best case scenario" and the surgeon is pleased with her progress and her outcome
• For knowing true grace from God's example
• For this blog acting as a journal for me to be able to look back and recognize answered prayers

Prayer Requests:

• For perspective and continued answered prayers
• For Hazel to continue and strengthen her left leg muscles
• For there to be no issues that arise from the last 4 rounds of chemo
• For final scans to be clear and Hazel to be forever CURED!
• I haven't mentioned this in a while, but continued prayers over Hazel's other organs that may have undergone damage with the chemo (especially the bladder, heart, and ovaries/fertility)

This man. You never forget where you are when you hear the words, "your daughter has cancer." You remember the room, you remember how your heart sank, and you remember the face of the person uttering those words.... forever. It's one of those pivotal moments that alters your life forever. A moment that is then used as a measurement of time....before cancer and after cancer.
I can't even imagine having the job of being the person to shatter parents' hearts with such devastating news over and over. They must be direct, they must be sensitive, their words must be easily understood, and they must be patient as they repeat answers to the same questions. "Will she survive?" "Is this curable?" "What does this mean?" "Will she be ok?" It's like an altered reality that you're stuck in, unable to hear and comprehend the answers they're giving you. You want nothing more than 100% reassurance that your child WILL survive, that your child WILL be ok. But instead, they can't give promises, they can only give statistics. They must lay out what your new life will be. They explain the diagnosis, where it is, what it means and what they're going to do to fight it. They have to explain the in-depth ways in which experts "stage" your cancer. They explain "medications" (aka poison) that will be used, along with the short and long-term side effects; as if you have a choice to opt for something else. No.... they have to sell it to you that the horrible side effects is what's best for your child, because the alternative is worse. They must convince you that while this fight is not one you would have ever chosen in life, it's one you have to fight. They must all the while be compassionate and empathetic, pass you the kleenex and sit in silence as the news sinks in.
There's tears.
There's confusion.
There's desperation.
There's questions, LOTS of questions.
Then more tears.
And then there's hope in the plan to fight.
There's determination.
There's a shift you make to fight mode.
Wiping away tears, you then utter the words, "when can we start?"
Start fighting.
Start winning.
Start making the detour back to normal life.
To yesterday, the day before cancer.
All of this is this man's job, his career. It's his every day. I'm sure it's heavy. I'm sure it's hard. I'm sure he empties his tank every single day.
This man will forever be a part of Hazel's story. He will forever be a part of mine. I'm so grateful for his dedication to Hazel, giving her the attention he would want for his own child. He was her biggest advocate and taught us to be the same. He researched, he studied, he fought for her, even on his time off.
I'll never forget the night that he called us at home from his personal cell phone, minutes after receiving an email. He didn't have all the answers yet, but he couldn't help but call us to tell us the good news.... there was a surgical option after all! He had just received an email from a doctor stating that after going to Tumor Board out of state, Hazel was a candidate for a limb-preserving surgery! Previous to that email, we thought only radiation was our option (or surgery that would take her whole leg and half of her pelvis which didn't seem like a true option). It was a night near Christmas, during his week off. Here he was during his vacation time, still thinking of & fighting for Hazel. Instead of undivided attention during family time, he was checking his email. And instead of keeping that information to himself until the next clinic visit, he gave us a gift. He took the time to call us, delivering to us an answer to our prayers.... surgery, always the preferred approach in her situation, was not only possible, but we had a doctor saying "yes" to helping our girl. He sounded as happy as I felt. I could hear it in his voice. Now, not only was it MY Hazel, but it was OUR Hazel. He too cared deeply about her.
It's in these moments, that I'll forever be changed. God put in our lives a doctor who cared. A doctor who researched the best options for Hazel. A doctor who never stopped fighting for Hazel alongside us parents. His assessments were detailed and his questions were intentional. He always listened to my questions and never doubted my gut instincts. He was nothing but professional and classy; always dressed up with a tie & smelling of cologne. And the way he would smile and laugh at Hazel, melted my heart. He made it feel like she was one of his grandchildren, beaming with pride as she first walked to him in clinic.
I don't know if these words will ever reach him, but I hope he knows the impact he's left on our lives, and I'm sure in the lives of so many. I'm guessing it's these moments that kept him showing up for the hard day to day work all these years. We were lucky enough to get to see him on his last shift before retirement. Hazel and I wrote him a letter. How do you sum up everything he meant to us? You don't, but I tried to convey our eternal gratitude for the role he played in our lives.
Farewell Dr. Camilo. Thank you for everything! I hope we see you years from now when Hazel's rung that cherished bell. I'd be honored to then introduce you to the beautiful adult Hazel has become.