Always Choose Grace
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:
Prayer Requests:
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)
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