PICU Day 2

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IMG_2564Allistaire was so stoked for the big Seahawk’s game today.  She was cheering for Russell Wilson the whole time.  Okay, so maybe not.  But Sten and I had fun watching the game in between the many steps taken to move Allistaire forward with support through this process.  It was a busy day but overall calmer and more relaxed as Allistaire seems to be in a really good place.

A Foley catheter to drain off urine was inserted this morning. This allows for urine volume to be tracked very precisely which in turn provides more exact calculations of fluid intake and outtake.  Additionally, a probe component of the catheter provides the internal abdominal pressure.  Another fine feature of the Foley, is a precise and constant internal temperature that displays on the screen along with all the other numbers being monitored.  They are also now taking girth measurements which also allows the doctors to track changes with her abdomen.  So far we are encouraged that her abdominal pressure is normal.  Her urine and stool are checked for blood, as is the contents of her stomach on occasion that is drawn out by the NG tube.  So far there has been no sign of blood, though she has not had any stool as of yet.

Because Allistaire’s blood pressures have stabilized, they have added Milrinone which helps to dilate the vessels thus reducing the pressure the heart is working against to pump.  It also helps the heart itself with pumping so that there is greater blood profusion to the tissues throughout the body.  This should help the heart not have to work so hard on its own and provide more blood to her gut where there is tissue at risk of cell death, as seen on the CT. If you look closely near the bottom (slightly left hand side) of the CT image, you’ll see a small white ring with a dark gap on the upper left side.  This white ring and the white line beyond it show the thickened wall of the bowel and the dark spot may indicate lack of blood flow and thus necrosis.

Today they increased her transfusion thresholds, platelets going from 10 up to 50 and red blood from 21 to 25.  They want her to be in a strong position, especially with any potential internal bleeding.  Her hematocrit had risen to 41 from about 27, not because her marrow is making new red blood cells but due to her dehydration yesterday.  The blood was more concentrated, resulting in a higher concentration of red blood per the volume of blood.  This means it is a little difficult to accurately determine her true hematocrit.  They will take into consideration both her hematocrit and her fluid needs in determining when to give red blood.  This morning she was given a transfusion of platelets and this evening, red blood.

She will be given a GCSF (Granulocyte Colony Stimulating Factor) shot to stimulate her marrow to produce blood cells.  Without this stimulation, she would typically have zero white blood cells for the next two weeks.  Given the severity of this infection, Dr. Gardner (who consulted with not only Dr. Tarlock and Dr. Ho, the two AML docs here, but also with our beloved Dr. Pollard) wants Allistaire to have these shots to speed up the recovery of her marrow.  For myself, I have quite a fear of the GCSF shot.  When Allistaire first relapsed back in February 2013, her first course of chemo involved GCSF with chemo.  This was the round that on Day +16, she had blasts for the first time.  Dr. Gardner understands my fear but believes the benefits outweigh the possible con.  Based on her last bone marrow, there are no detectable cancer cells so in accordance with the idea that she has no cancer, the GCSF shots cannot obviously produce cancer cells.  If they are there, well, they’re there and there’s nothing to do about it.  Having her recover from this infection is the absolute highest priority.  The shot will likely be given every day for the next few weeks, around 6pm.  Those with other forms of cancer that do not originate in the myeloid blood line, are often given GCSF shots to help them recover more quickly.  Tomorrow evening she will also begin daily infusions of donor neutrophils which will likely make her sicker before she really gets better.

This evening Allistaire began getting TPN (Total Parenteral Nutrition) and lipids.  TPN looks like a big bag of urine but quite awesomely contains all of her necessary nutrients.  The lipids (fats) look like the purest cream you can imagine.  These should begin this evening as well. Each day she will also have her chest and several views of her abdomen x-rayed.  Today her chest x-ray looked  more clear of the bit of fluid that had gathered in her lungs.  I haven’t heard that there was any significant change shown in her abdominal X-rays.

The hardest part for Sten and I are the times that she is desperate to communicate with us and tries to speak but no sound comes out (the breathing tube goes right between the vocal chords).  This afternoon she was asking and asking for something to drink.  It is uniquely awful to tell your child they cannot even have a sip of water and to know that it may be weeks before she can.  When she had to get an IV placed in her foot in order to provide enough lines for all of her meds, she silently screamed, “Take it out.”  When only a half an hour later, the nurse had to give her the GCSF shot, her eyes again shot wide with terror and she was intent on telling us something we never could interpret.  I sincerely hope she won’t remember this time.  Thankfully I think they have truly found a great spot of balancing adequate sedation with her morphine where she is not expressing pain overall and sleeps a lot but is also very interactive and can answer yes and no questions and can ask for things like her blanket to be pulled on or off of her.  In one of the close up pictures, I asked her to smile.  It is barely visible in the picture but when you are with her you can very clearly see her sweet spirit.

It hurts to see her so debilitated.  On the other hand, I have felt mostly content and at rest with this process.  Dr. Gardner said that this is a bad case of typhlitis, which if you look it up, you will see is really not optimal.  She is very hopeful that she will be able to clear this infection in time and will be able to proceed with transplant as planned.  Despite all of the interventions, Allistaire is tolerating everything extremely well.  It reminds me so much of transplant where there was a lot going on and it looked very scary, but what was happening was well understood and they were able to adequately respond to her needs.  This sort of scenario is precisely why Allistaire stays in the hospital, “awaiting count recovery.”  Chemo is just one piece of providing for her in this fight against her cancer.

These days make clear what it is to be “immune suppressed, ” to be “immune deficient.”  This is what it looks like to be totally vulnerable and without defense.  This is the major downside to chemotherapy, it kills the bad guys and the good.  One day I hope for a means to destroy cancer that doesn’t come at the cost of my daughter’s ovaries, her heart, her bowel.  I get giddy imagining a day when little girls and mom’s and grandpa’s can get cancer treatment without putting them right in the way of other potentially life threatening dangers.  A few years back I read a fantastic book entitled, “Biomimicry: Innovation Inspired by Nature.”  Biomimicry is defined as, “an approach to innovation that seeks sustainable solutions to human challenges by emulating nature’s time-tested patterns and strategies.  The goal is to create products, processes and policies – new ways of living – that are well adapted to life on earth over the long haul.”  The author explains that most often we as humans use the “heat, beat and treat,” methods to create.  We use high heat, extreme pressure, and significant chemicals to create which in turn neither produces as quality products nor sustains the environment in which they are created.  Animals and nature, rather, use processes that sustain the surrounding environment and produce amazing products.  The abalone shell is one of the hardest materials on earth and is accomplished by an elegant laying down of hexagonal molecules in layers that don’t directly overlap.  An abalone creates it’s shell out of materials readily available in its own environment and in such a way that its environment is sustained.  This is not even close to what humans do to create steel.

I could go on and on about the many beautiful accomplishments of nature, but in our scenario, it is the immune system that gets all the glory.  The immune system is amazing at detecting and destroying invaders that would harm the body and it does it in such a way that the health of the body is sustained.  The immune system is the hope of future cancer treatment.  One day, we will no longer have to indiscriminately dump poisons into people with cancer in hopes that the pros outweigh the cons.  No don’t misinterpret what I am saying.  I am weary of a segment of folks talking about chemotherapy like it is “evil,” and should be avoided.  Chemotherapy is a phenomenal gift and has accomplished a lot of good.  Cancer is extremely complex, far more than the average person could ever imagine.  Chemotherapy, in many ways, is targeted and works in impressive and complex ways.  But alas, it is still so far from ideal.  But that “one day,” is already beginning.  The immunotherapy being developed is rapidly opening up amazing options for more precisely targeted cancer cell death, accomplished in such a way that the bodies own systems kill and clean up.  You guessed it, we need more cancer research!  Allistaire needs better options!  What about your kids?  What about your grandchildren?  What about your mom or yourself?  Cancer touches so many lives right in your little circle.  We need better options for ourselves and for those we love!

As today comes to a close, I am so thankful for what the last 24 hours has accomplished.  Sten is here.  I am thankful for his support and sweet Allistaire asks for him almost every time he leaves the room.  This evening she seemed quite upset after having to be wiped down and was crying little silent tears.  Sten and I tried so hard to understand the motions of her mouth.  Finally we figured it out.  She just wanted daddy to sit next to her and hold her hand.  What dear, sweet, unfathomably precious people God has given me.  IMG_2562 IMG_2565 IMG_2567 IMG_2570 IMG_2572 IMG_2573 IMG_2576 IMG_2580 IMG_2582 IMG_2583 IMG_2584

9 responses »

  1. Uff, the PICU. The worst place to be…and yet, when needed, the best. I’m so grateful to have (had) that level of care and support available for our sweet girls. The medical teams and their combined expertise are simply amazing.
    By far the hardest thing as a parent is longing to interact with and comfort the child who is so poked, monitored, restrained and sedated. Take heart! She is aware enough to take comfort in knowing you are right there beside her, and yet afterwards she is unlikely to remember much of anything, thanks to the effects of those lovely sedatives.
    We are praying and praying for your peace of mind, health & stamina, and it goes without saying, for the wisdom for the medical team, complete healing of this infection and Allistaire to have the strength needed to press on toward transplant. Love to you all.

  2. Dear Sten and Jai, words are hard to gather as one looks at the things you are facing moment by moment, know that our Fathers heart is heavy for all of you in the midst of this trial. He is praying for you along with the rest of us, and He says He will be right there with you moment by moment, He tells you that when it is to heavy to bear give it to Him and He will carry it for you. Because of this sin sick world your little girl is having to go through these awful things. But our Father is greater than the world, He is holding your little one in His hand. He loves the little children and is grieved to see what she is going through. Praying for all of you . Remembering what Corrie TenBoon said ” there is no pit so deep that our God is not deeper still”. Praying!

  3. You are all daily in our thoughts and prayers from Iowa. May this medical team continue to provide for this precious little girl all that is necessary for her. Strength, health and hope for all. Thank you for your words in keeping us posted on progress. God bless you all.

  4. I don’t know you – but somehow stumbled onto your webpage. Allistaire is on my daily prayer list, as well as her parents and medical team.

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