Another little girl, so alike Allistaire

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78664fa8-04b3-45d4-8744-03205fe8c0a2Friends, you dear people who have supported us so faithfully throughout this long and difficult journey…I don’t call you “dear,” lightly, you are precious and of great value to my heart.  You have been part of the great throng of people who God has used to hold us up through months and then years of struggle and sorrow, victories and defeats. You have been generous with your hearts, your time, your money and your prayers.

Today I implore you to pray on behalf of another little girl whose story so closely resembles Allistaire’s.  Now I am the one in your shoes, heart hurting from afar, prayers pleading up to heaven for God to show mercy, to make a way through and struggling to figure out how I can help.  Last December 2013, while we were in Seattle for Allistaire’s chemo and appointments, my friend Pam told me of a little girl named Stevie, who had just been diagnosed with AML.  She was just about 2 years old and was life flighted from her home town of Hamilton, Montana, two days before Christmas.  Her parents, Keshia and Michael, walked away from their life in Montana as students and joined Stevie at Seattle Children’s Hospital, to fight alongside her.  When I found out about this family, my heart and mind immediately was transported to our own horrifying December when our nearly 2-year-old beloved was diagnosed with AML.  I was able to contact Keshia and visit the three of them in the hospital.  I yearned, with a sort of desperation, to bring all that I had to bear to serve and care for and support these bewildered folk, whose story I so well understood.

Fortunately, Stevie went into remission after the first round of chemo, just as Allistaire did.  But the chemo weakened her heart and she was unable to receive the standard fourth round of chemo, the infamous big gun – Blue Thunder (officially Mitoxantrone which is combined with high dose Cytarabine).  Instead, she was given the FLAG regimen which is the standard first round of chemo for relapsed AML.  She continued to be in remission, finished treatment and moved home to Montana.  Sadly, this sweet girl only had two months of life at home until a routine blood test showed extremely low platelets and blasts.  Keshia and I were planning to meet up together in Missoula with our girls for lunch since I was headed that way to take Solveig to camp in June.  One day we were making lunch plans and excited to see each other and literally the next I was trying to take in the news that Stevie had relapsed.  I knew so clearly what relapse meant – transplant.  And I know what it means to have a transplant – first there is the hope that you can get into remission to even qualify for a transplant.  This process alone can take months.  Then you hope and pray for a match.  If you make it to transplant you hope the intensity of the chemo and radiation and all the possible side effects don’t take your child down.  Then there is the long, long trek out of that crevasse, trying to evade Graft Versus Host Disease while not endangering the body with defenses down because of immune suppressants.  The list of awful long-term consequences are something you can’t even begin to consider.  My whole heart went out to Stevie and her parents.

While  initially they were in Seattle for immediate care and confirmation of relapse, they quickly moved to Philadelphia for Stevie to be treated at CHOP (Children’s Hospital of Philadelphia), in order to be closer to family support.  Stevie’s heart had regained some strength thanks to Enalapril which is the same drug Allistaire has been on for her heart and will continue to be for up to five years.  So Stevie was now able to get Blue Thunder.  There was the long wait in the hospital for her blood counts to drop to zero and then for her ANC to rise again to at least 200.  Thirty-five days later, they were able to get a break and wait for results of the bone marrow test that would tell how effective the chemo had been at suppressing the leukemia.

Five days ago I got this text from Keshia, “Well we got the worst possible news today, the chemo didn’t do anything, and her percentage of leukemia is actually higher than when we got here.  And they said they will do another round (of chemo) but they don’t expect it to do anything and they don’t expect her to make it to transplant.”

This right here, this moment is when the dagger, hot, cuts right through your heart and you gasp and collapse and your eyes are wide because you cannot possibly begin to fathom what has just happened.  Every step before has been hard, excruciatingly difficult and wearisome, but this, this is an all together different reality.  You have now reached a precipice you wanted to block from your mind.  You have journeyed far and now you stand looking into a deep, black crevasse and you are absolutely terror-stricken.  You have not yet fallen and you hope desperately you won’t, but the possibility that you will be plunged into that suffocating, clammy darkness – it’s real, this is not a nightmare, this is your life and you feel yourself teetering and growing faint.

Not making it to transplant equals death.  There is no other treatment for relapsed AML.  If you are not in remission, you will not be offered the opportunity, the gift and horror, of transplant.  Why?  Because the odds are so low that you will survive, they won’t put you through it.

Every bit of Stevie’s journey comes at me in blazing, vivid detail of sight, sound, smell, touch.  I know rubbing your hand across the bald curve of your child’s head, of watching them sleep, of going to bed crying and waking with tears in your eyes.  I know the heaviness in your arms and legs that feels like you can hardly even stand.  My heart cries up to the heavens and pleads with the Lord, “Father, Father, please, make a way through for this little girl!  Have mercy oh God!  Hold up her parents.  Make your face shine before them.  Give them ears to hear your voice and pull their hearts to you.  Mercy, mercy, mercy oh God!”

This is the most recent update on Stevie’s Facebook page:

“Stevie’s leukemia did not respond to her re-induction phase of chemo. When we arrived at CHOP she had 26-36% blasts, and the results from her bone marrow biopsy tell us she now has 50-70% blasts. Whats next? We pray for a miracle. She is being admitted today for her next round of chemo, she has a 1 in 5 chance that her leukemia could respond. We pray for that to be the case, if not, we could potentially have to relocate to participate in a study, texas, Maryland, wherever we have to. Please pray for Stevie. For those of you who don’t know, Stevie has M7 AML which tends to be a little more unpredictable and harder to treat than other types of AML. Please pray for Stevie. You can help at youcaring.com/superstevie we are uncertain of the road ahead and need all of the prayers we can get.”

Please friends, I ask you, please pray for this little girl and for her mom and dad.  Please call out to the God of the Universe who is able to heal.  Pray for healing.  Pray that more than anything, Keshia and Michael would know the comfort that only He can give in all circumstances, even the darkest.  And please consider giving to them financially.  I know I have asked much of you, to give to further cancer research, and you have given so generously to our family.  I know there are many demands on your finances and so many worthy causes.  But here, here is another example of a child’s life, an otherwise healthy, happy, thriving girl, whose life is hanging on the hope that there is some medicine out there that will cure her, perhaps some clinical trial that will make a way through.

Allistaire was given a 5% chance of survival.  Her story is not yet complete, but she is alive, she thrives.  I hold out hope that Stevie can make it, no matter how small the odds.e93af59f-4cfd-4c15-86a1-07e4a354a7ed107284e6-a0a9-4bee-83c0-6da8d5162ca38e032fe0-c363-4dee-a20d-2f40e32d2fb36b9a4378-6273-4f53-bb7c-d344223dbbeb
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6 responses »

  1. Oh, Lord. Have mercy. I echo and affirm Jai’s prayer. Be known in this family’s valley, by Your providential hand, please make a way through.

  2. Jai, you have such a gift with words and tell the story in the most amazing way. We will pray for Stevie. My chest is tight and I wish I could take away this pain from all children and their families.

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