Roadmap

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IMG_1466I’ve been to Target several times since leaving home.  I keep thinking of things I’ll need in the hospital to streamline my life.  Living in a hospital takes strategerie.  Now, if you’re there for a few days, even a few weeks, you can just sort of role with the discomforts, annoyances, and inconveniences of hospital life.  But that’s not what we’re up against.  We are facing months and months of living in the hospital.  When Allistaire relapsed the first time, she lived in the hospital for one hundred and forty-eight straight days.  I was there for most of that.  And living in a hospital is like living in a foreign country where things are just done a different way than at home and you can’t access the things you have come to expect and need.  There are awesome upsides to hospital life, like – I never have to clean the toilet or buy paper towels or launder my sheets.  I have free, crazy fast wi-fi and more cable channels than you can imagine.  But on the flip side I have to accept that people will be coming in and out of our tiny little space all day and throughout the night.  There is almost no privacy.  One learns to sleep on strange pull-out-couch-beds with lights, clicking sounds, beeping, alarms, frequent calls for your attention, for assistance.  In the morning, I gather my things in a Trader Joes’s bag and walk the 100 yards down the long white hall to the showers wherein I don my purple plastic flip-flops.

It’s weird how normal all of this feels.  The last two mornings Allistaire and I have enjoyed the quiet of the Hem/Onc infusion clinic on the weekend.  The normal bustle of the hospital is replaced by emptiness and calm on Saturdays and Sundays.  We go check in with the nurse who must “lay eyes on her,” before she can order up the chemo from Pharmacy.  We know our usual rooms we are assigned to because Allistaire is in contact isolation until the end of time, due to having VRE (Vancomycin Resistant Enterococcuss).  We joke with the nurses, many of whom we know.  The nurse practitioner drops by to say Hi and says how sorry she is, with tears in her eyes.  It’s all the same, the same routine, round and round.  We have been here countless times before.  There is odd comfort in that.  But it is a comfort that also leaves you agitated because it all still feels so fundamentally wrong.

Allistaire has been doing alright, often cheery but no longer her normal self.  She’s getting more fatigued, cries more easily and can become overwrought by the smallest thing.  She has intermittently been in pain which mysteriously comes and goes.  On Thursday when Sten flew home, I had to give her four doses of oxycodone to address her strange back pain.  Now it’s gone.  At another point she suddenly bursts into tears that her foot is hurting and she struggles to walk.  The last few nights she has woken me four or five times with crying in her sleep.  I go to her and ask if she’s in pain; she is disoriented and says No.  On Friday morning, she had surgery to place her Hickman Line.  It hurt my heart.  Her body has no massive scars but rather a myriad of small ones, four biopsies of leg, back, lung and arm, nineteen bone marrow tests has created a scarred dent on the lower right of her back, four scars on her chest and neck from the previous two Hickman’s and now this new one with its tender wounds.  There hang those handy but wretched “tubies.”  All these outward signs of the fight within.  I’m finally getting over my denial.  Her hematocrit had dropped to 32.  I was finally ready for her to get chemo.  I finally unpacked my bags last night.

Once again, our life seems to have been shattered and in a disarray.  I knew this could happen.  I knew that if I took Allistaire to the doctor, it could be like willfully walking off a cliff.  So I stalled and I hoped it was all nothing and would simply go away.  The last two weeks have been a whirlwind and simultaneously brutally slow in determining what lies ahead.  Because, man I just want to know.  I just want to know what we’re doing here and how it’s all going to work out.  I walk through the grocery store and see Thanksgiving napkins and turkeys.  In Target all the Christmas decor is emerging and it sounds so lovely to be planning for a big family meal and a pretty mantel and tree.  They are all pinpricks, little relentless jabs that remind how different life is from how we thought it would be, how we long for it to be.  Friends inquire when they can come visit and I look out into the night and see no landmarks, nothing to give perspective on distance and time.  I scan the horizon and all I see is void.

I suppose they name it a “Roadmap,” to make you feel a little better, to inspire some confidence that we all know what we’re doing here.  We have purpose.  We have a plan.  We have a roadmap.  And we do have a plan and I really can’t complain.  It creates some framework, some structure to the days ahead.  It feels like we get to be intentional, well thought out and that gives the impression of control.  And oh how we hope it is not an illusion but actual control, actual power over those wily cells, so resilient and persistent. The Roadmap says that Allistaire will receive 7 days of Decitabine, each for a one-hour infusion.  She will then have four days off, her last days of freedom before being admitted to the hospital on Wednesday, November 19th.  Starting on the 19th, she will receive an infusion of Mitoxantrone, Etoposide and Cytarabine each day for five days.  The next twenty-four days will be a matter of waiting for the chemo to takes its effect, protect against infection, address pain and nutritional needs and provide platelet and red blood transfusions due to her decimated bone marrow.  Once her marrow has sufficiently recovered, thus also giving any remaining cancer cells time to recover, another bone marrow test and PET/CT scan will be done around day 28.

Beyond December 17th, I have really no clue where we’ll be.  If this round of chemo fails, it’s very possible we’ll head to Denver for the DOT1L trial.  If, gloriously, she’s in remission sufficient for transplant, then conditioning (chemo & radiation) for transplant would begin in earnest. In order to have a transplant, however, she needs a matched donor.  In March of 2013 when they searched the world for a donor for her, they only came up with 2-3 possible options, none of which were in the United States.  I just received paperwork from SCCA (Seattle Cancer Care Alliance) about reinstating the donor search for her.  I was blown away when I read that there are 22.5 million people world-wide that are registered donors, and yet – there were less than a handful of options for her last time!  That’s wild!  That tells you how critical it is that more people join the registry because our genetics are so diverse and are becoming more and more so as ethnic groups intermix and have children together.  So we pray again for a donor.

I have to say that I’ve been feeling pretty down about Allistaire’s prospects.  I think if she can get to transplant, then she has a shot, a very narrow, small shot, but a real chance nevertheless.  But I look back to the last time we tried all sorts of chemos to get her in remission and absolutely none worked.  I was encouraged though last Thursday when a mom that I met said that this DMEC round is what put her son into remission for his third transplant.  I met her at a little party I was invited to.  But really, it wasn’t little at all.  There may have been less than 20 people in the room, what we were there to celebrate is phenomenal.  You see, a nine-year old boy, Zach, died last January after complications from his third transplant for AML.  In all the years that Zach fought cancer, his parents, Julie and Jeff, were determined to scour the earth for options to save their boy.  They had the resources to execute a phenomenal search for Zach’s cure.  Their journey led them here to Seattle to Seattle Children’s and Fred Hutchinson Cancer Research Center.  They began to work with Dr. Phil Greenberg at Fred Hutch as he and his lab were advancing the potential to use TCRs (T-Cell Receptors) to destroy cancer cells.  “Data from early phase clinical trials have demonstrated the capacity of high-affinity TCR Tcells to eradicate leukemia in individuals who have relapsed after a hematopoietic stem cell transplant.” (Quoted from the Juno Therapeutics website where Dr. Greenberg is one of the scientific founders).  The death of their son, Zach, has only fueled his parents’ passion to work even harder to bring better options to kids like Allistaire who have very difficult to treat AML.  In the course of the last twelve months, Julie and Jeff have spearheaded fundraising efforts to benefit Dr. Greenberg’s lab that has provided 1.7 million dollars to further his research.

Their efforts and the generosity of so many people combined with the countless years of tireless research by not only Dr. Greenberg and his lab, but many others at Fred Hutch and Seattle Children’s Research, have yet again intersected with our lives.  Apparently Allistaire’s school pictures arrived after we left Bozeman.  I realized yesterday that I never cleaned out her little cubby with her paint shirt, gym shoes and pencil box.  When we drove into a parking garage the other day she yelled out, “B!”  I had no idea what she was talking about until I realized we were on Level B and again the cut twisted in, the combined joy of realizing she was beginning to learn her letters that would eventually enable her to read and the pain of knowing she would never return to preschool.  That experience is forever cut out of her life.  There are countless ways our lives are not what we thought they were going to be or so desperately wanted.  But when I look back to August 2013 and consider where the doctor said we would be, Allistaire in the ground, I am heartily reminded that I have ever so much to be thankful for.  And one of those gifts that extended life has produced is the possibility that Allistaire might be the recipient of these marvelous genetically modified T-cells.  I had the chance to speak at the party for a few minutes and tell Allistaire’s story.  I told the story to the members of Dr. Greenburg’s lab, each amazing scientists in their own right and the majority of whom are women.  There were many red faces with tears.  Allistaire was there to be the tangible reminder of why they work so hard.  We had the chance to talk with Dr. Greenburg briefly.  What an unexpected gift all around.

I look out into the void and strain to see landmarks showing the way ahead.  I just can’t.  I just have to dwell in the present.  That’s not so bad really, I mean it’s contrary to what my nature prefers, but the Lord has given me weapons to aid me in the fight to rest.  Isn’t that ironic, I must actually fight, wrestle to rest.  But that’s what this battle actually is at its core.  So, I eat the manna, God’s provision for me this day.  I rejoice knowing He has gone before me and laid down provision up ahead.  He opens and closes doors to guide me along the path He has chosen for us.  He holds Allistaire in the palm of His hand.  I could really go on and on and on about The Lord’s all sufficient capacity to care for us.  This is what I do when the dark waters rise and threaten – I focus my eyes not on trying to see the way ahead, but rather I fix my eyes on Christ, being reminded that He is THE way.  My friend Betty, showed me this great profound and simple passage in 2 Chronicles 20.  The Israelites are surrounded by invading armies, and they sum up their battle strategy with this as they cry out to God, “We don’t know what to do, but our eyes are on you.”  Perfect.

On a side note, I will be putting out a post in the next couple days on specific ways to help.  For now, I have updated the page, “How to Visit & Send Mail”

The first few pics below document Allistaire’s previous two Hickmans.  The first was at diagnosis in December 2011 when she was 21 months.  This one was removed in May 2012.  She got her second Hickman upon relapse in February 2013 just before she turned 3.  That one was removed in March of 2014 when she turned 4.  And here we are at number 3 with her second relapse in November 2014 at 4 1/2 years old. Unfortunately the surgeon was unable to put it on her right side again, but everything went smoothly on the left.

A few links worth checking out:

Juno Therapeutics 

Zach Attacks Leukemia

Fighting Fire with Fire

Be The Match

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10 responses »

  1. Jai- you are all in our prayers, especially your sweet Allistaire. I have just grown to have a deep love for her over these years of praying for her and following your blog. Our hearts are heavy for you, Sten and Solveig. Thank you for the time you take to write these posts. The Lord is using your example of how to cling to your Savior in the midst of this dark time to impact me and others. We will continue to pray!

  2. Thank you for the update. The pics show so much history, victory and hope as well as hurt, pain and relapse. Our family is praying and will continue to praise God for the perfect donor, that the chemo will work and that Allistaire’s body will stay strong. Fixing our eyes on Jesus today, The Sayre 6

  3. Words fail me as I find you are back in Seattle and what that means. Yet your faith astounds and brings me to my own knees at the reality of it all. I will pray strength and peace as you walk through these uncharted waters and never failing to ask for complete healing. Your story, Allistaire’s story has touched our family in a powerful way that we are forever changed. May His Spirit equip you mightily! -Your friends in Port Angeles

  4. Thank you again for sharing your life with us, for sharing the pictures of Allistaire’s sweet little face, then and now. My four-year-old daughter prayed for Allistaire tonight, that Jesus would take all the badness out of her body and that He would give her joy and peace. Your entire family are in our prayers!!

  5. Jai-my heart sank when I saw on Jo’s fb page that y’all were back in Seattle. I haven’t read a single post since then because I couldn’t bear the thought of this being true. So I skipped past all the articles and wouldn’t let myself enter in because I knew my heart would break. But this morning, after my time with the Lord, I knew it was time to enter in to the pain with you all. And my heart is broken. Sometimes having the Mercy Gift from my Savior is not my favorite because I can feel the pain you carry. Tears stream down my face as I walk into your reality. Please forgive me for turning a blind eye. And please know that I’m praying and wish I could hug you in a long, understanding, mom-hug. If you come to Denver, we will surely visit and bring gifts or anything y’all may need. For now, we are praying and walking along side you now ❤

  6. Oh, Jai, Jai…and Allistaire, Solveig, and Sten…I sit and look at our own dear little face, surrounded by the lopsided mop of curls that have grown back since the chemo this time last year, and in our (tentative) gladness I can still feel the smack in the gut of what it means for you guys to be back in the middle of it all. Apart again, suddenly uprooted, the inability to see the road ahead, the need to strategize for hospital life, ON ISO no less (VRE, noooo!…I must have missed something, I didn’t know that before.) Bless you. Thinking and praying for you all the time. May God give you the strength for what’s ahead. We will help any way we can. So much love. –Jennifer, Chad, Lydia & crew

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