Tag Archives: DOT1L

I Will Still Love You When I Die

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photo-42 photo-41 photo-40 photo-39I reached behind the seat, in the dark car and rubbed Allistaire’s leg.  “Are you okay Sweets?  Are you in pain?  What are you thinking?”  Her sweet little voice and tender eyes respond, “I will still love you when I die.”  I look over at Sten and see the glassy sheen of tears filling his eyes.  She was desperate for a new doll with a pretty dress.  Already, so fast, I am discovering it impossible to say no to the desires of a little girl who may not have much time left in this world.  When she pointed up to the top shelf and said she wanted the doll in the white dress, a ragged cry caught in my throat.  A doll in a wedding dress.  “She will never get married,” stood the stark statement in my mind.  We walked hand in hand back through the parking lot, my arm bobbing along with her joyous skips.  “Mommy, I’m learning to skip in gym,” she declared with triumph.  Immediately I saw in my mind her uniforms for school hanging in her closet.  She will probably never go back to school.  With certainty she will never, ever go back to preschool.  She only got to go to two of her dance classes and less than a handful of her swimming lessons.  I don’t know how to bear it.  No, she is not dead, not now.  But death is already coming to rob, to shred and tear and ravish.  I think of her room, of her closet with the walls covered in her school work.  She only counted to 10 for the first time the other day.  It will never matter if she can hold her scissors right or read.  It will not matter that her ovaries could never give her children.

Throughout this long day, Sten and I both so hoped, thought somehow there might be a way out of this.  It just seemed too awful.  We had literally just begun to taste of a real life all together.  For so long I silently berated myself for making her cancer such a big deal.  In my Bible Study discussion group, my every response seemed tied back to this agonizing battle.  It has consumed nearly everything in our lives.  It saturates every decision, every hope, every plan.  I fear I may be swallowed whole by it or torn bit by bit into thousands of tattered pieces.  I do not know how to bring this little girl home to die.  So many points of her life flash into my mind.  I remember so clearly sitting in my blue chair reading one evening.  I felt her move inside of me for the first time.  I was only 13 weeks pregnant.  I remember her so sweet adorable round head and beautiful cheeks.  She loves to snuggle in bed on Saturday mornings and no pleasure is greater than opening my eyes in the morning to see her bright blue eyes smiling back at me.  Lord help us.  Father help us.

Dr. Gardner called at 5:30 to say that she had called the pathologist.  It would be another 30-60 minutes.  They just had so many samples to run through.  She told me that the radiologist at Children’s who looked at Allistaire’s X-ray from Friday did not think it looked too abnormal.  We were not sure what that meant but stowed it away into our basket of hope.  We were in the toy store when Dr. Gardner called back.  There is .9% leukemia in her marrow.  Just shy of one percent cancer, but it doesn’t matter.  It doesn’t matter that 99% of her marrow is healthy.  There is present there a marred thing, a mutated ugliness that cannot be stopped and it will not stop until it is all there is and there will no longer be red blood cells to carry oxygen or platelets to bind up wounds or white blood cells to protect against the constant invaders of bacteria and virus and fungus.  I watch her play with the train set.  We have told her her sickness is back.  As I embrace her, she says she is sorry and then returns to the trains oblivious, utterly oblivious of what will likely come.

Allistaire’s leukemia is not a high enough percentage to qualify at this point for the DOT1L inhibitor trial.  She must have 10% or more to qualify.  Dr. Gardner says she will call us tomorrow after Allistaire’s MRI to talk about what’s next because at this point she doesn’t know.  She has already begun talking with Dr. Pollard who is now at the Barbara Bush Children’s Hospital in Main and will also be consulting with the transplant doctors.  I asked whether or not she could do the trial for transplant without remission that she did before, as I saw that it had reopened.  No, no it didn’t work before, so they do not allow you to do the same trial again.  And then she adds this, “if she does not get in remission, she will most likely not be offered any transplant.”  My heart nearly stops.  Remission.  Oh what an overwhelmingly hard goal.  And now I see.  If this DOT1L inhibitor does not work…there may be nothing after that.  Nothing.  Nothing but making the most of the time that is left.  This is where my whole being slams so hard against the wall.  How is it possible for me to give up?  How can I possibly every come to the point that we have nothing left to offer her?  Can you not see this girl?  This bright shining fiery flash of a girl?!  Tell me how can she be extinguished? How can I possibly stand by and watch that happen.  How can I ever bear the sound of silence in my house?  How will I walk past that room?  What will become of Solveig?  How can we love her well enough?

It is so surreal to watch people go about their life when your’s has just been absolutely cut through.  You hear people laughing and you see the blood seeping from your side and you feel yourself grow faint.

I feel decimated.  I feel flattened and torn.  Bewildered.  How do we keep going?  I mean, I know we will, somehow we will, but how? How do I walk forward without absolutely wasting away, skittering across the ground like a dried out husk.  What have the days behind me shown me?  “Lift Your Eyes.”  I feel so feeble, but this is my life-line.  This is my anchor.  I ask my God to help me lift my eyes to see Him.  Oh Father, give me eyes to see you.  Give me ears to hear your voice.  Help me to lean on the truth that you are the Ancient of Days.  You are the Alpha and the Omega the beginning and the end.  You hold all things together by the power of your will.  You are the creator God.  What is seen with my eyes is not all there is.  Let me not be deceived into believing that this is all there is.  Am I desperate for their to be something more?  There is the part of me that thinks that if this finite life is all there is, if I really just turn to dirt when I die, then let me die now.  Let me just be done with this life and this burden.  But I know in my core that there is a mystery of such magnificent beauty from which I cannot turn away.

My Father, who art in heaven.  Hallowed be thy name.  Thy kingdom come.  Thy will be done, on earth as it is in heaven.  And give me this day, thy daily bread.  And forgive me of my trespasses as I forgive those who trespass against me.  And lead me not into temptation, but deliver me from evil for thine is the kingdom, the power and the glory forever and ever, Amen.

I choose to look back over the years and seasons I have walked this life alongside my Christ.  He has been faithful to me.  He has laid in my palms treasures of understanding, more glorious than anything else I have known – in part because they embrace what is dear to me, they illuminate the true nature of what my life consists.  I love my children more.  I love my husband more.  I love the earth more.  I love my church more.  I love my flesh more.  I love the other spirits in my life, my friends, my family, the person at the check out, I love them all more.  Knowing God has enabled me to somehow both treasure my life more and more and also to hold it all with an open palm – to see it all as it is connected into Him.  This life of mine is not just about this small window of time.  This awful cancer that gnaws and destroys, it is but for a time. And scope, scale – these are some of the foundation stones that enable me to walk forward.  I am finite and it is natural for me to view my life from a finite perspective, but the eternal God is beckoning me to lift my eyes – to fix my eyes on Christ and to believe Him when He says there is so, so, so much more.  He promises to redeem.  He promises to resurrect.  He promises to wipe away every tear.  I come again to that passage of His word, worn with my pondering and hope:

2 Corinthians 4:16-18

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.

Every Day Is A Gift

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IMG_1303Every Day is A Gift.  That’s what Sten’s dad says, a lot.  It can sound trite.  It can sound flippant.  But it is a truth we rarely look at in the face.  It is a gift so like the breath we breathe that we rarely even consider it.  It is a monumental truth that deserves constant thanks.  There is, however, a dark side to this truth.  Every day, life can be taken.  Every day, life can turn in a flash so that what seemed so predictable, so dependable, so unchangeable, is shown to be in actuality – well, flimsy, not as anchored down as we thought.  In a breath, the whole landscape of our lives can change. It did for my dear friend’s father on Tuesday when he was diagnosed with a rare gastrointestinal cancer.  It did for a little four-year old in Bozeman on Wednesday, as she and her family were uprooted and sent to Denver to fight her Acute Lymphoblastic Leukemia.  It did for us on Friday.

Allistaire’s very first day of preschool began in a way I could not have imagined.  On September 3rd, I woke Allistaire up early to get dressed in her little blue plaid jumper, the required dress for school.  She wore the button up white shirt with the Peter Pan collar and white knee-high socks.  She looked adorable, with the exception of her constant crying and moaning.  Her arm hurt she said.  Fear.  Fear like a long sliver pierces my mind.  It’ll go away I thought and good grief now the cute picture on your very first day of school is ruined.  It was already an enormous deal that Allistaire was going to school.  Going to school marked a victory of which few would even be aware.  She looked like a normal little girl.  Who could have guessed one year prior she was given a 5% chance to live.  Who could begin to imagine by looking at her in that sweet little jumper, that this girl’s life had been pressed up against the door of death multiple times.  Going to school meant victory, meant life.  And there was this unexplainable, out-of-the-blue pain.  Though she seemed to be in pain during that first school day, by the time I went to pick her up, she was chipper and said her arm felt fine.

Before cancer, I was a pretty laid back mom when it came to health concerns with my kids.  Most things seem to go away on their own and rarely it seemed, could a doctor help with most of their ailments.  “It just has to run its course, ” seemed to be the standard response.  In general, I have a “buck-up,” and don’t’ make a big deal out of it attitude.  In the weeks leading up to December 1, 2011, I explained away Allistaire’s fatigue, grumpiness, and lack of appetite with ear infection, teething and still trying to get over a cold that had required antibiotics.  It was not until she turned the color of a macaroni noodle did it occur to me that something might be off.  Who could have guessed their 21-month old had cancer?  So these days, every single blip must be rigorously analyzed and evaluated.  Every time she falls asleep in the car, I turn the situation over and over in my mind to see if some angle might reveal evidence of cancer.  So it was with her arm pain.  It came and it went and mostly it just wasn’t there.  She didn’t really want to raise her arm and I kept feeling diligently for evidence of enlarged lymph nodes in her arm pit.  When she relapsed in February 2013, a lymph node in her left arm pit grew to the size of a golf ball in a matter of a few days.  I tried to talk myself out of getting too concerned.  It’s probably nothing.  It’ll probably go away.

On Tuesday, October 14th, Allistaire went to her scheduled appointment to see her pediatrician, Dr. Angie Ostrowski.  Her labs looked great.  There were a few small lymph nodes in her groin but nothing alarming, just something to watch.  The trauma of the day was getting blood drawn and then five shots to continue to catch up on her immunizations since all of hers were wiped out with transplant.  After her appointment we went over to the Montana State University campus to help promote the Bone Marrow Registry Drive.  It was a joy to get to speak in front of a few classes and approach groups of students in the Student Union Building to encourage them to register.  I was delighted to see how responsive many people were.  I even had the joy of meeting an older man who overheard me talking with some students.  He approached me and said that he had received a bone marrow transplant  from Fred Hutchinson Cancer Research Center for AML back in 1978.  Wow!  That was at the very beginning of transplants.  Two hundred and sixty-three more people were added to the registry as a result of that day’s efforts.  I went home that afternoon with an exhausted little girl but a comfort in my heart that we had passed through one more hurdle with such great labs.  The next step was to head to Seattle in late November for routine appointments with Dr. Carpenter and the cardiologist.

This Thursday morning she woke up happy and full of joy, but at some point during her bath, started to cry about her arm hurting.  She cried for a while and then she cried again on Friday morning.  It was hard to tell if she was making a big deal out of things.  But clearly she was hurting.  I hoped somehow it was growing pains.  But she had a very hard morning at preschool and I was told she cried several times.  In gym, she ran with her right arm just hanging and didn’t seem to want to use it.  Her teacher asked her multiple times if she should call me.  Allistaire was empathic that I was not to be called.  But enough was enough.  I was taking her in.  I called and was able to bring her in right away to see Dr. Ostrowski.  By the time we arrived, Allistaire glibly declared that her arm didn’t hurt.  She expressed no pain during her exam except for one bizarre moment when she went from laughing to instantly crying and having a hard time catching her breath.  She denied crying however.  Perhaps she did not want to acknowledge the pain for fear of what that would mean.  She had labs drawn again and X-rays of her arm and chest.

We waited for quite a while in that little room.  Allistaire fell asleep in my arms.  I called out to God in bewilderment, aghast and astonished that it was possible some awful reality was about to be exposed.  I asked how many times I would have to wait in small rooms waiting for the swing of my life to be revealed.  It came to me to read Psalm 34.  To be honest, I read those words and wanted to cling with hope to their truth.  “I sought the Lord, and He answered me; He delivered me from all my fears..The righteous cry out, and the Lord hears them; He delivers them from all their troubles.  The Lord is close to the brokenhearted and saves those who are crushed in spirit.  The righteous person may have many troubles, but the Lord delivers him from them all.”  But I wondered, what is the meaning of these words, for I have watched my own life forced to walk directly into my deepest fears.  I have known others who love the Lord who have not known the deliverance of their child’s life for which they pleaded so long.  Help me to understand these promises Father.  I know the Lord delivers, but I also know He often does not deliver in the way we imagine He will or should.  When the Israelites were enslaved in Egypt and God at last sent Moses to ask Pharaoh to let the people go, I’m guessing they would have preferred to have been released immediately without having to experience any of the plagues.

The door opens, Dr. Ostrowski lab-top in hand, and a look on her face that makes my heart sink.  “The X-ray looks very concerning,” she told me.  She proceeded to show me the hazy outline of the top of the humerus bone that indicates some sort of breakdown.  It should be a smooth clean edge, but it’s not.  Something’s going on there and an X-ray can’t tell us much.  An MRI would be much better at giving a detailed, accurate picture that could also show the soft tissues.  Her labs looked good but clearly something is not right.  The one lab result that was not normal was her CRP (C-Reactive Protein) level which is a marker of inflammation.  Her’s was 19.6 and should be 3 or less.  After talking with Dr. Gardner at Seattle Children’s, I’m told that we just need to get to Seattle.  We have to look in her marrow.  I ask Dr. Gardner if this could be akin to the time prior to transplant that Allistaire stopped walking because of pain in her knees that was the leukemia pushing out of her marrow into her bones.  The answer was yes and this sort of bone pain is a way some kids will present with leukemia in the first place.

In one heartbeat I saw the potential path of my life unfurling out in front of me.  To Seattle?  Relapse?  Again?  Last time she relapsed it resulted in eight months away from home and nearly losing the fight multiple times.  It’s been twenty months since she relapsed and we are literally just getting to the point where life was looking like it might have returned to some normalcy.  I didn’t even have to try to imagine the road before me, I knew it already.  I knew it all except that final point.  Death.  I have not had to cross over to the other side to the death of my child.  I was not even sure what treatment they could offer her.  I knew a second transplant would be a likely option, and wow, how utterly overwhelming.  Every single thing about it felt overwhelming.  Dr. Ostrowski and I sat there bewildered with tears in our eyes, neither of us able to take in this insane reality.  We left the office shaken and with the task of packing up in one day before we left to Seattle on Sunday.  Allistaire was scheduled for 8am labs on Monday, 9am visit with Dr. Gardner and a 9:40am bone marrow biopsy.  Not one bit of life was either known or predictable beyond that point.  The texts and phone calls began in a flurry.

Allistaire kept crying out in pain so I stopped at Town & Country (our local grocery store), for some pain meds.  I couldn’t stop crying.  I couldn’t look the checker in the eye.  I handed him my credit card and he asked what was wrong.  I told him my daughter’s cancer may be back.  He said he’d pay for the Tylenol and waved me on in compassion.  Within minutes I had a call from Ashlei, our social worker from Children’s.  She’d already put in a call to Ronald McDonald house but knew that it was packed out.  She was working on an application to Alex’s Lemonade Stand to ask for money for a hotel when we arrived.  Fifteen minutes later she called back to say that she been told that we should have a room at Ron Don Sunday night, and if not Sunday, for sure on Monday night.  In the midst of my tears, I had to smile at our good fortune.  A free place to stay and appointments scheduled just as rapidly as could possibly happen.  It was stunning.

We made our way home and decided to continue on with our Friday night pizza and movie tradition.  What else should we do? Sit around and cry?  Plus, I was raging hungry.  All I’d had to eat the whole day was one cookie.  When Sten walked in with Solveig, I told her to come sit down beside me on the couch.  With eyes wide, she said, “I know it’s something bad.”  We told her Sissy’s sickness might be back and that we had to go to Seattle and we didn’t know for how long.  She cried, tenderly hugged Allistaire and then the two of them spent the rest of the evening frolicking and laughing and enjoying their movie.  Sten and I were just in shock and already ever so tired.  We made all the phone calls and told all the necessary people and we sat in silence at the counter knowing what could be before us.  We went to sleep knowing we might have one more day all together at home.  As we lay in the dark, in tears Sten said that he was afraid.  “This feels like the beginning of the end.”  Yes.  We both know this is a real possibility.  In the night I wake up to go to the bathroom and feel the carpet underfoot.  From hence forth I may walk on cold linoleum to the bathroom.  I may go to sleep at night again with people moving all around and lights and beeping and sound that disrupt.  I shudder at the thought as I look out into the silent darkness of my house.

The next morning I arose early and went out into the cold morning dawning.  I saw the last few stars and heard the calming rush of wind in the dark evergreens on the hill.  To the southwest, the new snow on the Spanish Peaks, broke white into the blue of sky.  Every joy, every pleasure feels like a cutting, a gouging out.  Each highlights what is at stake of being lost.  I headed into town to meet with any who wished to pray together.  I felt a bit foolish.  Perhaps I was being overly dramatic.  When my dear friend, Hope, asked if there was anything she could do, I thought yes, yes, how I have longed to gather together some of those faces that have so faithfully and generously prayed for us these last several years.  If she had indeed relapsed, I knew there would not be such an opportunity again for a long time.  As I looked around the room at the faces gathered there and as prayer after prayer went up, beseeching the Lord, I felt so overwhelmedly blessed.  Look again Jai at the bounty He has bestowed upon you.  That so many hearts would yearn, alongside mine, to both see Allistaire healed and the Lord glorified – I felt my heart and faith swell.  The Lord had reminded me of the story of Shadrach, Meshach and Abednego who were thrown in to the furnace by King Nebuchadnezzar.  There in the furnace with these three men, King Nebuchadnezzar saw a fourth man “walking around in the fire, [who] looks like a son of the gods.” I may be thrown into the fire.  The Lord may allow it, but behold, there walks with me Christ, the Son of God.  Our time of prayer was worship and praise for a God who is able to deliver and is faithful to His promises.

I could only bring myself to pack for the short-term.  If we would indeed be forced to be away from home for months, I would deal with that later.  So we packed on Saturday and headed out Sunday morning.  This is my eighth drive to Seattle in the last twelve months.  It’s beautiful and every single time I wonder if I’ll make it home.  When I walked out of the door that morning, I wondered, once again, would Allistaire ever return home?  Would she return home to live or to come to die?  I push against the thoughts and force myself to walk down the stairs and get into the car.  We’d had word that there was a room for us on the third floor of Ron Don and when we arrived, every smell hit me as familiar, and sorrow and home.  Each face that greeted us showed grief and compassion and mixed joy with seeing us again and comments on how tall and mature Allistaire seems.  What an incredible gift it is to have a small bit of space to call your own and drawers in which to store your things – a little island in a stormy sea.

This morning was, well, hard and hilarious.  The hard was Allistaire’s absolute terror about getting an IV placed.  Sten held her down, pressing his legs against hers to prevent her from kicking any more, his arms encircled her to keep her still but with red face and wild eyes she screamed, “NO,” over and over, “I don’t want a poky.”  They blew the first vein on her hand and eventually got someone else to try again further up her arm.  We three were hot with sweat from the stress and horror of this required confrontation.  At last it was finished and the vial was full of blood.  I moved to get Allistaire a tissue and hit the inside of my ankle hard.  The pain was quite shocking and far worse than seemed reasonable.  I went to sit back down and told Sten I felt like I might pass out.  And then I did.  Sten says I was out for 30-45 seconds and I awoke only after the nurse began vigorously rubbing the top of my breastbone.  I quickly declared that I was fine because even in my disoriented state, I understood that I felt pretty dumb for causing such a ruckus when it was Allistaire that should have been being cared for.  While Allistaire was later in the procedure room getting her bone marrow biopsy, I visited with Ashlei, our social worker.  “Were you the Code Blue?” she asked after I relayed the story of passing out.  Oh dear.

So, Allistaire’s labs looked great again and Dr. Gardner could not feel any lymph nodes either in her arm pit or groin which was a relief.  The plan is this: We will get bone marrow test results back tomorrow.  If the bone marrow is clear, we will go ahead with an MRI scheduled for 7am on Wednesday morning.  If the Flow Cytometry on the bone marrow is clear, this will give us hope that something else could be going on in her bone.  However, they still want the MRI because it could show the classic signs of a leukemic infiltrate that is isolated to this one part of her body.  If this were the case, they would then schedule a biopsy of the bone to confirm leukemia.  If the MRI results were not definitive, they would also do a biopsy.  If however, the bone marrow biopsy shows leukemia, they will do the MRI just as information gathering.  Dr. Gardner said that at least there’s a ray of sunlight if Allistaire has indeed relapsed.  I was incredulous that there could be a ray of sunlight with relapse.  Apparently a very promising new drug, DOT1L inhibitor which specifically targets the MLL (Multi Lineage Leukemia gene rearrangement that Allistaire has) is currently in trial.  Even through it is still only in phase 1, I am told there is a lot of hope that this drug will be very effective.  It is exciting as I remember it being talked about over the last year before it was available.  The bummer part is that the trial is in Denver and the other major bummer is that it would be used in an attempt to get her into remission for a second transplant.  Daunting.

I’m tired.  It’s nearly midnight.  We’re only a few days into this thing.  When I think about what may be before us, even in the best case scenario that she doesn’t die, it is overwhelming.  I was just starting to allow myself to look down the road of my life and start setting goals.  If Allistaire has relapsed, this fight once again moves to the forefront, forcing everything else to the back.  Yeah, I’d really like to keep running and developing my friendships and learn to do silversmithing, but the big ones are my marriage and my relationship with Solveig.  I am forced to leave everything in God’s hands.  In my Bible Study, we are studying the life of Moses and have just worked through the 10 plagues and the Exodus.  Each time God tells Pharaoh to let His people go, He says, “so that they may worship Me.”  Once they have been freed from Egypt, God gives them specific instructions on where to camp all so that the Egyptians will pursue the Israelites and God will have the opportunity to once again, show His deliverance in an amazing way that declares He is the Lord.  The directions regarding where to camp and by what road to travel seem odd, they put the Israelites into another hard place where they are trapped, this time up against the Red Sea.  Who am I to say what path my life should take?  The goal, the whole point of my life is that I might worship the Lord and in so doing, declare by this life God has given me, that He is Lord.  I have learned that to walk with the Lord is to know fullest of life.  So I choose to follow Him.  I see once agin, the two roads – one full of light and life and one dark and narrow.  My hand is gripped in His.  It is for He to decide and I know that regardless of where He leads, His Right Hand will hold me and sustain me.IMG_1244 IMG_0535 IMG_0542 IMG_0606 IMG_0908 IMG_0936 IMG_0968 IMG_0985 IMG_0994 IMG_1035 IMG_1045 IMG_1047 IMG_1080 IMG_1091IMG_0800 IMG_0830 IMG_0836 IMG_0856 IMG_0869 IMG_1145IMG_1211 IMG_1223 IMG_1225 IMG_1254 IMG_1255 IMG_1278 IMG_1290