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| Chandler and Clara enjoying some carefree playtime today. |
Last Saturday while Clara was still inpatient, her oncologist visited with us about the next phase: stem cell transplant. He presented us with two options. Number one: we could enroll her in a clinical trial in which she would be randomly selected for either one transplant or two transplants. Number two: we could opt out of a clinical trial and proceed with the standard of care which is one transplant. You can probably imagine the burden such a decision places on a parent. So we did the only thing we know how to do in time of uncertainty, we made it a matter of fasting and prayer. Meanwhile we read over the literature we had been given, searched the scriptures, and poured over the words of our church leaders.
By Monday morning Brian and I independently had our answers. We both knew with no amount of uncertainty, Clara was to receive no stem cell transplant. Medically it makes no sense. But we can make no excuse for the answer we have been given. There is a blessed assurance of peace and comfort that has accompanied this decision in knowing it is God's will. But, it is hard. Really, really hard. We pray every day, as we have since May 23rd, for a miracle of healing, but if not, trust in the Lord's plan for her and our family. We have had many tender mercies this past week reminding us of a loving Heavenly Father who is watching over us. We are grateful to know that we can be together forever as a family. Knowing that, well, it makes trials like this, easier to bear.
Wednesday and Thursday, Clara underwent a barrage of scans and tests. This evening we were given the results of most of them and are encouraged. In comparison to the previous work-up the neuroblastoma cells have greatly decreased in number. Initially she had "spots" in dozens of places within her body, and now the only seemingly active areas are her optic nerve region and the location of her primary tumor in her abdomen. It is possible these sites are actually scar tissue or dead cells, unfortunately there is no way of knowing.
The road ahead is long and uncertain. We will take it as it comes and trust in the Lord to direct us in the decisions we make for Clara. Meanwhile we will savor the time we have together as a family spent at home.
6 comments:
That is one of the coolest, sweetest photos I have ever seen! It needs to be blown up and framed!! :) We will pray that news continues to be good for sweet sweet Clara! Enjoy your much deserved weekend! Amy
your testimony and faith is so inspiring. your daughter is in my prayers.
I've been reading your blog for a while now, a friend of mine in Seattle sent me a link. I live in Norway, but im truly toutched by the ordeals your sweet litte daughter is going trough. As a nurse I do find it rewarding reading stories from the patient (and families perspective) Your writing is truly amazing.
I was wondering, maybe my english is failing me, because you write that your are now choosing that Clara will not have a transplant? What is the next step for her instead?
I do not share your faith, but I do share the love a mother has for her children and you are on my mind! And my wishes is that Clara pulls trough, she is just such a beautiful little girl.
Kind regards
Anna
i can not even imagine the enormity or difficulty of making the decisions you are making as a parent to one of God's most precious spirits. i am so impressed by your faith and ability to trust the Lord. i am LDS and i understand the process but it all seems so daunting at the same time. i know He knows you and knows His will for your family. thank you for being willing to share the trials of your faith, of course it makes you stronger, but by sharing you make many of us stronger too. and more humble. you are certainly amazing examples of true believers. i pray that God will bless you with understanding, comfort, and mostly a miracle.
Natasha and Brian,
I can't adequately tell you how much your faith and full trust in the Lord has taught me.
I am praying for Clara and for each of you every single day. I pray that you can feel the love and prayers of so many.
Thank you for sharing and being so open and honest about this journey. Your family is always in our thoughts and prayers.
Loves,
Tiffani
I am so thankful for people like you who are able to keep hope and a large perspective, even when it becomes really really difficult. That made me teary eyed as well, not just because of sweet Clara but because of your faith in our eternal savior. Thank goodness for eternal families, and thank goodness for sweet spirits like Clara who remind us all. I wish you the best of luck too, and know, for certain, that she will always be where she needs to be; home.
I have learned that no righteous person dies before their time. A very similar experience has happened in my family. In response, I prayed and told Heavenly Father that my family had enough faith to defeat my aunt's cancer. When I "told" the Lord what I expected the thought that kept coming back to me was "but do you have enough faith to let her go?" Finally after being humbled, I pleaded with the Lord and understood that his will would be best. I am sure your heart has been there:). My aunt, who was given two months to live, carries on after two years since she was discovered to have 14 tumors. Perhaps she will go any day now, but I can carry on knowing Heavenly Father knows best. I love the effort you have put into this blog for all of us to read!
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