Friday, October 17, 2014

Very Sad News

Jim wrote the following email last evening. I couldn’t express it better:

David and Mary and I met with Dr. Amir Fathi of Mass General Hospital on Wednesday. David is feeling very well and strong. Unfortunately, that piece of good news is the only good news.

The leukemia cells are back, and likely to grow. There is no treatment known that has much chance of working. In fact, Dr. Fathi said that given David’s history of treatment and relapse, his chances of surviving this leukemia are infinitesimal. The leukemia could be fatal within a couple of months (very roughly speaking) with no further treatment. With treatment, it is possible the leukemia can be controlled for a while. It is also possible that that the side effects of treatment could be bad, or that the treatment could fail to slow the leukemia down at all.

Dr. Fathi reviewed three experimental possible treatments, all of which have some low chance of working for a while. David chose a Phase I clinical trial of cabozantinib. Dr. Fathi himself is conducting this trial. David will begin on Wed Oct 22. He’ll continue to be at home, with frequent outpatient visits. The cabozantinib is taken as a pill.

The way to think about this is that we have the gift of time to be with David for a while longer, especially this next little while when he’s feeling well. I’m focusing on this.

Accepting that David’s time with us could be short does not mean we’ve closed our hearts to the possibility of a miraculous cure. The experience of going through the past seven months with David and this illness makes me feel God’s closeness more, not less. God has his purposes and as a result our lives have purpose. I am more content than I have ever been to trust God with my own life and with David’s life. I am praying for David to be healed and if he is healed I won’t be all that surprised. At the same time, I am slowly getting ready to say good-bye, for now, to my son.


Here’s the email David sent to our families this morning:

            “You should probably sit down again. My doctor concludes that my chances of recovering from leukemia are extremely low. I probably have on the order a few months left to live. I am unsure what to think of this. I definitely haven't been overwhelmed by negative thoughts at this news, which is good.
I love you all
David”

            (Mary here) I went to the temple yesterday, to calm my troubled heart. In the temple ceremony, there is always a prayer for people in especial need. The officiator says a prayer aloud, which is never planned or rehearsed. Although he doesn’t know me, and has no knowledge of my situation, he was inspired to ask Heavenly Father for something I greatly need: strength for me as David’s caregiver. I feel great comfort in his heartfelt prayer.

            And I continue to feel great comfort in the love and prayers you have all offered and continue to offer. Thank you!


15 comments:

  1. enjoy your time with family. you are always in my prayers.

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  2. so sorry to hear this news. I will keep praying for better news.

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  4. Mary, Jim, and David - we love you. We love all of the Johnstons. We pray for you and will try to bear you up through this adversity. You are already so strong, but we will continue to pray for all of you to have strength. Brian is still counting on some more chess games, David!

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  5. There is a certain sadness we all struggle with as we look through a glass darkly. Great blessings are in store for each of us as we remain faithful and my prayers are that through this ordeal each of us will remain faithful and endure to the end

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  6. We have been following your blog for the course of David's illness. We have cried at each setback and broke down completely reading today's news and David's e-mail. We wish we had your courage and your faith which seems to make the situation easier - not easy - but easier. We admire you and David more than we can say.

    Our deepest hope and love go out to you and your family and, of course, to David...
    Meg & Jim

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  7. Mary, you are NEVER alone. Last Sunday I saw David and said, "Don't come near me, I have just been over a bout of strep and do not want to contaminate you." What I saw was the little boy I love(ed) so much in boy scouts and the now frail young man who needs hugs more than anything. I went home and cried. I hope you will reach out to me if you need a shoulder, a hug or just want to play the "Crying Game." When my brother died, I realized how much his physical suffering was over. I did not rejoice that he was no longer on this earth, but knew he was free from the earthly shackles of disease and painful treatments.
    I went through those brutal chemo infusions in 1996 and would pray at night to just die. It wasn't up to me as I needed that trial to understand what people like David is going through. (Besides, I am too mean and rotten to die). The lord only takes the good ones. I love you, Mary and I love Jim. Both of you have extended so many kindnesses to my family. So, Let's think MIRACLE.

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  8. We are all praying for a miracle of healing.

    But if that doesn't come, David will experience the miracle of eternal life, leading the way for his family.

    "Precious in the sight of the Lord is the death of his saints." (Psalms 116:15)

    When the faithful saints depart from this life they “are received into a state of happiness, which is called paradise, a state of rest, a state of peace, where they shall rest from all their troubles and from all care, and sorrow” (Alma 40:12)

    "Wherefore, ye must press forward with a steadfastness in Christ, having a perfect brightness of hope, and a love of God and of all men. Wherefore, if ye shall press forward, feasting upon the word of Christ, and endure to the end, behold, thus saith the Father: Ye shall have eternal life." (2 Nephi 21:30)

    "Come, ye blessed of my Father, inherit the kingdom prepared for you from the foundation of the world.” (Matthew 25:34.)

    God bless David. God bless David's family.

    Gordon Low
    Cambridge Stake President

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  10. We are very sorry to hear this news but warmed up by your unwavering faith.We'll keep the Johnston family in our prayers. With lots of hugs and love
    Th Battezzatos

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  11. Will be thinking of you both and praying for David's recovery! This is heartbreakingly hard.

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  12. I believe in the power of united prayers! You have many unitedly praying for your dear David and you, Jim and the family. Love and prayers for all of you.

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  13. Mary and Jim, we will continue to add our faith and prayers to yours. God bless you and David.

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  14. Thinking about you all today. You are in my thoughts and prayers.

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