I met with Dr. Cooper for Allistaire’s clinic appointment last Wednesday afternoon.  The results of the week’s testing were mixed.  The bone marrow test showed no leukemia detectable by Flow Cytometry which is an awesome improvement from prior to this round.  Previously the Flow test showed about 3% and the cytogenetics FISH test showed 6%. We don’t have cytogenetics back yet from this most recent bone marrow test.  The PET/CT affirmed what the brain MRI showed from two weeks ago with significant improvement in the chloromas in her sinuses.  The trouble is, there are also spots in her lungs that have showed up.  Because the resolution of the CT done with the PET is low, Dr. Cooper wanted a high-resolution CT of her lungs.  It took a mere 15 minutes to leave clinic, check in with radiology, walk back to the CT machine, get Allistaire loaded in, hold her breath at the right time and we left the hospital arriving back at Ron Don.

While I was totally relieved to hear good Flow Cytometry results for her marrow, the spots in her lungs pose a major, major problem.  There are three options – they are chloromas/leukemia, fungus or bacterial.  Dr. Cooper relayed that Dr. Bleakley, the BMT (Bone Marrow Transplant) doctor said that if these are chloromas they indicate an incredibly aggressive cancer (given that the chemo isn’t successful at keeping her cancer down even for a short time) and she will probably not be offered a transplant.  No transplant obviously means the end for Allistaire.  The other options, fungal and bacterial, represent infection which would require some aggressive treatment.  Allistaire’s bone marrow is so beaten down that it is barely recovering from the last round of chemo.  Her ANC (Absolute Neutrophil Count) was 64 as of Sunday’s labs.  Today is about Day+48 of this round of chemo.  Typical bone marrow recovery is an ANC of 200 by Day+28.  This means she has very few white blood cells to fight any infection.  So while she has no symptoms of infection, she also has very little to fight with and would have even less once another round of chemo begins.  In a way we must hope that these spots are infection because this at least gives her an option to go forward.

Given that it is imperative to know the nature of these spots, Dr. Cooper said doing a lung biopsy would be necessary, but of course if was my choice.  My choice?  I suppose so, but to say no to the biopsy would equate with choosing to be done.  Amazingly, the biopsy was able to be scheduled for Friday afternoon, with the plan to go into clinic in the morning to get platelets first.  Strangely, Allistaire’s blood pressure was incredibly low, even lower than its normal low.  The strategy of the heart failure team is to push Allistaire’s cardiac meds just as far as they can without totally bottoming out her blood pressure.  They continue to titrate up her meds every Wednesday, alternating between going up on the dose of Entresto and Carvedilol.  So while the purpose of the cardiac meds has nothing to do with trying to lower her blood pressure, this is the direct side-effect.  On Friday her pressures were in the low 60s over mid to low 30s.  More typical blood pressures for Allistaire are 80s over 40s.  She was examined by the nurse practitioner and the clinic attending doc who both agreed she looked great – bright, energetic, engaged, good capillary refill and strong pulses.  Her pressures came up slightly after the platelets.

Finally it was time for the biopsy and the surgeon explained that first Allistaire would go to CT where the Interventional Radiologist would use CT to guide the placement of a needle within which there is a small wire.  Once the IR doc locates the spot in the lung that is the target of the biopsy, he places the needle and then removes it, leaving the wire.  She would then be transferred to the OR where the surgeon would remove the spot using a tool that places staples on two sides and has a blade on one side to cut out the spot.  He said that most likely she would leave surgery with a chest tube to help drain fluid rather than allowing it to build up within the pleural space while the hole in the lung sealed back.  He said it could take anywhere from a few days with the chest tube up to a few weeks and that it would be quite uncomfortable.  As I was about to leave Allistaire in CT as she had just fallen asleep, the anesthesiologist looked concerned.  She told me that she wasn’t sure they would able to continue with the procedure if Allistaire’s blood pressures did not remain stable given how low the base line pressure was.  As I walked out of the room with a weighty heart, 59/30 shone green on the monitor.  Would she make it through this procedure?  How desperate we are to know what is going on in there.

Thankfully, all went well both with her pressures and the procedure.  She was already awake by the time she was transported from the OR to recovery.  Soon she began to complain of burning pain in her chest.  She was given a dose of Dilaudid and began to calm down.  An X-ray a few minutes later confirmed that the pain she was having was from the chest tube tunneled under her skin.  Her oxygen saturations were dropping every so often because she didn’t want to take deep breaths due to the pain from the chest tube.  She was transferred up to the Cancer Unit Friday evening where she was given morphine every 2 hours.  Allistaire was very quiet and went in and out of sleep as she watched movies.

Saturday began with an x-ray to look for fluid, air or gas filling the pleural space.  I was surprised to learn that because there was minimal drainage from her chest tube and the X-rays were looking good, the surgeons decided to turn off the suction on her chest tube.  They would check it again in four hours and then take another X-ray.  If all looked good, they planned to pull the tube.  So around 5pm, the surgeon, nurse and I strategized on how best to pull the tube.  I made a commitment to Allistaire many months ago in the ICU to always tell her if something scary or painful was going to happen.  But I’ve also learned that for Allistaire’s sake, it is best to tell her as last-minute as possible as she often gets really worked up with a lot of anticipatory fear.  The nurse quickly ran a dose of Dilaudid over 5 minutes and I curled up next to her in bed.  I told her the surgeon was here to remove the tube because her lung was looking so good.  He would remove the gauze, cut the stitches and when he was ready to pull the tube, he would tell her to blow out of her mouth which helps to keep air from entering the body in the small space of time between when the tube is pulled and the dressing is placed.  Allistaire was terrified and kept asking when did she need to blow.  The truth is I don’t even think she felt the tube come out given that there was no indication it was out and suddenly it was all over.  She did a great job, she was very brave.

From this point, Allistaire had another X-ray four hours later and then at the 24 hour mark from the time the tube was pulled.  Because all continued to look good, she was able to be discharged yesterday evening.  She only needed one dose of pain meds once the tube was pulled.  The day was fairly uneventful with the exception of being given some misinformation about results of the biopsy.  I was told that a person from ID (Infectious Disease) said that this (the spots in her lungs), looked more like a disease process.  While the attending doctor was later able to clear this up, saying that there were absolutely no results yet, I spent several agonizing hours contemplating the reality that Allistaire’s options had finally come to an end.

I can’t be fake with Allistaire.  She is so intuitive, so sensitive, so incredibly sweet and tender.  I couldn’t stop crying.  I just stared out the window at the steel gray clouds interspersed with late afternoon sunshine.  “What’s wrong, Mommy?”  I tell her the spots in her lungs look like more sickness and if this is true, she can’t have her transplant.  The other day she asked why she can’t just keep getting tubie medicine.  I had to explain that her body just can’t handle it.  How can I explain to a 5-year-old that inside her sweet tummy are kidneys and a liver and a heart and lungs and white blood cells?  How do I explain that iron builds up in your body with every transfusion of red blood and eventually you will die from iron poisoning.  This is not a chronic illness.  This is an acute, deadly disease.  “Your tubie medicine is poison, Allistaire, it kills cancer cells but also hurts your body.”  On this day, as I cradle her warm little body, her soft luxurious curls against my cheek, I think of what my friend Esther wrote.  About the desperate need to soak her in, to burn every memory into my brain, so that when she is gone, I can find her again, if only in memories.  But I can’t, I can’t.  It isn’t enough.  I hold her tight, desperate not to let her go.  “I just hope I won’t notice it happening,” Allistaire tells me about the fact that she may die.

I let her go back to her movie and her model magic.  I stare out again at the gray.  What is the best way to let her die?  Do we even try another round of chemo?  Do we try to extend her life just as long as we can?  But might this mean letting that wretched tumor grow in her face?  All that pain.  I think back to four years ago.  These were the dreary November days that she just slept and slept.  She would be asleep for five hours in her crib taking her nap.  I would debate with myself whether or not to go wake her or just let her sleep.  I feared finding her dead in her crib.  She wouldn’t crawl up the stairs anymore.  She had little interest in eating.  On December 1, 2011, I would first learn the word, “hematocrit.”  Her’s was 9, just a mere 25% of her red blood.  She had absolutely no energy and her heart beat fast like a little bird, desperate to pump those meager cells around her body.  Maybe this is the way, I consider, just let her go quietly.  She wouldn’t even notice.  She would just fall asleep.  Her heart wouldn’t be able to keep up.  Maybe this was the most gentle way to let her go.

I still don’t have biopsy results.  In fact, I didn’t expect to get them until today or tomorrow anyway.  But soon I will know.  I woke up in the night.  What do we do if they say no to a transplant?  I’ve thought of so many other desperate stories where they allowed transplant, even were there was little chance it would work.  Why deny Allistaire the chance?  This one last chance.  If they say no here, do we try taking her somewhere else?  These are the doctors in whom I have placed my trust.  They have earned my respect.  They know Allistaire.  They genuinely care for her.  Do I just disregard their counsel, their decisions and rush out into the fray, unwilling to lay down this battle?  The doctors have always told me, you will know when it’s time.  But this?  At this point I feel no peace, no rest in stopping.  It doesn’t feel clear at all.  I always hoped, assumed, it would be clear, that if at last there were no more options, no more open doors, I could at last say okay.

As always, the world operates on a calendar, on schedules, on days of the week.  I heard my first Christmas song three days ago and all I felt was shock.  Has the world again shifted, are we already at another holiday season?  Sten and Solveig and Sten’s parents are coming for Thanksgiving.  In times past, we always cut down our Christmas tree the day after Thanksgiving, one of my very favorite traditions.  I always looked forward to that day, the day I would pack away all the oranges and browns of Fall and pull out the silver and glittery of Christmas.  All just seems desolate, empty.  I just wanted this one last chance for Allistaire.  Just this one chance.  Oh God.  Please.