Friday, April 21, 2017

It Never Gets Easier...

     In this life of childhood cancer, it is very simple to make plans in our minds.  Plans to do the dishes or the laundry.  Plans to visit with friends.  Plans to get our kids in after school activities.  Plans to sit down an write an update.

     But following through on those plans....not so easy.  Forgetting to even attempt to follow through on those plans....super easy.  Feeling guilty for not being able to do them....even easier.

     A cancer parent's brain is filled with appointments, both planned and unplanned; (Hazel has had daily appointments for radiation for 12 weekdays straight, on top of follow-ups with doctors, unplanned blood draws and transfusions and unexpected ER visits); lab result numbers (a printed out page full of them); the most recent temperatures taken on a given day; schedules of the handfuls of daily medications that must be administered; thoughts on when the last time your child washed their hands or used hand sanitizer, or if you have enough of the numbing cream left in your medical supplies for the next time your child has to endure a port access, or if your child lost and gained any weight this week and ate enough healthy food to keep them strong; and fears about whether all of the hell you are going through is even going to be enough.

     Place all of this in the middle of a family of seven, each person with their own needs, desires, worries, and even health issues, and put it on the shoulders of parents just struggling to keep the tears from falling, their marriage together and their sanity intact, and it is no wonder that plans get changed, cancelled or forgotten.

     It has taken every single part of me just to get by these past weeks since my last update, that I can only focus on the victories that I got Hazel to her treatment, and my family fed and dressed for the day.  And two days ago, it marked 4 years since Hazel's initial diagnosis, and it made me realize how long we have been at this.

     We are tired.  We are weary.  Our faith is shaken.  Our brains are depleted.  And cancer just doesn't let up.  IT JUST NEVER GETS EASIER.

     But despite how weary we are, despite how sad we are, despite how scared we are, our little Hazelnut breaks through all of that with such strength, joy, courage and determination.  Since I last updated you, she took on two more rounds of chemo (at the reduced strength) and took it on remarkably well.  The side effects were far less overwhelming (she only vomited a few times and only spiked a fever once, sending us to hospital for a short two-day stay), so most of these last weeks she spent feeling well and in very high spirits.  She then had twelve doses of radiation, administered by some of her favorite nurses in the entire hospital.  The team makes this experience as enjoyable as possible (as much as you can for a child who has to lay perfectly still in a machine all alone), by playing music or movies, having "party lights" lighting up the whole room, a sticker chart to fill out, a treasure chest to pick out a prize each day, and just by having the most loving and joyful hearts.  Hazel actually would jump in excitement each day she knew she had radiation!  But although the treatment went really well, by the end of it, she was ready to be done.  It made her very tired, and by the end of each day, pretty nauseous.  The wear and tear of all of this treatment was showing on her little face.  I think, that despite being strong, and brave, and joyful, she is just as ready as we are for this all to be over.  

     Since August, it has been difficult to hold onto hope, knowing that we did not have any concrete treatment plans and had no end in sight.  And when you feel hopeless, you feel helpless.  Going through treatment like that is a very difficult way to live.  So when her last scans came back to positive, it felt like a breath of fresh air that we could finally take deep into our lungs.  However, as cancer treatment goes on, that breath escapes our lungs as quickly as it goes in, so it isn't always very easy to keep holding onto that hope.

     But we met with her doctor a few days ago, and will meet with her again next Monday, and she is still feeling very hopeful.  She believes that this treatment has been working, and will continue to work.  Her plan is to have Hazel get one more dose of this reduced strength chemo next week, and then do her scans sometime after that.  Her hope is that we will see clear scans and then we can start to move Hazel onto some form of maintenance treatment, which will be far less toxic on her little body.  She even hopes to have Hazel well enough to be back in school in the fall!  But even though he hope gives us hope, we all know that Neuroblastoma is a sneaky little devil, and finds ways to mutate and become resistant to treatment.  So these scans are still just as scary as any other.

     Please keep praying for our family.  We have been through seasons where God's presence was so evident in the journey we were walking, but right now it has become more and more difficult for us to remember His promises and to see His hand.  We want to be honest with that.  We don't want to hide.  We want it so that people going through the same thing will also not feel alone, or isolated or guilty.  We know we are not perfect, and we don't want to pretend to be.  But we will continue to ask for your prayers, in faith, so that we may be lifted up and begin to see the light and the hope once again.  Pray for our faith, pray for our children, pray for our marriage, and pray for our little Hazelnut.






10 comments:

  1. I just received my good report, how I wish I could give it to y'all. I will continue to be your faithful prayer walker.

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  2. Looking forward to a victorious next chapter for Hazel and the whole family. Peace, love, health, happiness, unity to you and yours. xoxoxoxo

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  3. Hazel as well as your family are in my daily prayers.


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  4. Love your little family

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  5. I'm glad that Hazel's chemo and radiation are going well! Sending peace and love to Hazel, you and the rest of the family!

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  6. Hazel you are a blessing. Love you so much! I hope to meet your family one day😙

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  7. Continued prayers gor your family. May God's grace and presence lighten your load. Trust in him. We are fighting too. A different cancer amd a disease. My husband so tired of thr fight but the little ones push him. God bless you! 🙏🏻🙏🏻

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  8. I pray that God will give you the strength and grace to persevere and keep on keeping on. To indeed finish the race set before you all. I am continually amazed how you have stayed faithful through so much and for so long. I love your honesty and that you allow us to share in your struggles as well as your celebrations. Have we really been praying for precious hazelnut for 4 years! You now seem like 'family' who we love dearly and pray in earnest for our Lords will to be done and his joy and peace to envelop you all. John and Edwina Kuala Lumlur ����

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  9. Praying for continued healing, strength and joy for your family, and that you would constantly be aware of Jesus holding you tight in His arms of love❤��❤��

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