Rejection, Acceptance and the wonders of potholes


IMG_1564IMG_1566The door opened on Wednesday morning and the nurse joyously said to Allistiare, “Happy Birthday!”

“It’s not my birthday day.  My hair is going to fall out,” stated Allistaire with a scowl.

Back in January, around the time of Sten’s birthday, I told Allistaire it wasn’t long until it would be her birthday – that it was coming in March.  She looked up and gazed out the window and pointed, asking with glee, “it’s coming outside?”  So Allistaire’s concept of time and events is still being formed.  I think by the end of March 6th, 2013, she had accepted that it was indeed her birthday after about the fourth present and my brother, Patrick, and sister-in-law, Briana and kids came to celebrate that evening.

Apparently, however, it has been pretty easy for Allistaire to accept that her hair will fall out.  We have this little board book at home all about teeth – how you find them everywhere.  And you have two sets, set one and set two and that you’ll lose set number one but then you’ll get set number two. But don’t be like Billy Billings who has fifty fillings, presumbably due to the ridiculous amount of junk food he is pictured gobbling up.  The truth of this book has been aided by Solveig getting her first wiggly tooth.  Thus, it has been a simple connection to say, “your hair will fall out, but then you’ll get new hair.”  She seems at ease with this idea.  I told her that when it starts to fall out, I will cut it short and she will be beautiful.  And she will be beautiful, despite losing her Farrah Fawcett feathered wisps.  What I will miss the most is her extravagant bed head and her new found joy of twisting her hair around her fingers.

It has been an eventful week for Allistaire in addition to her birthday.  On Monday night she received her last infusions of chemo for this round.  Tuesday afternoon brought the last GCSF shot much to Allistaire’s great relief.  She hated them and refused to let me remove the bandaids from the previous shots resulting in about five bandaids on her thighs at one time.  Tuesday was also Allistaire’s first dressing change of the clear sticky patch that covers her Hickman catheter.  This was the single most terrifying aspect of Allistaire’s treatment last time – at least from her vantage point.  I wish I could report this time it was easier but it wasn’t.  Allistaire refused for quite a while as we tried to convince her to play with her iPad while I used the adhesive remover to get off the old dressing, rather than having to hold her down.  She cried and shivered and shook and her eyes were wild with fear.  My hands trembled as I slowly and as gently as possible removed the patch that probably pulled on her still-sore chest where they “tunneled” under her fat to place the line.  Julie, our child-life specialist, was actually encouraged however, because Allistaire did eventually stay relatively still and de-escalated quickly.  She said that these indicated the degree of fear Allistaire was actually experiencing.  She also noted that most kids kick and flail their arms and try to run away.

Wednesday was not only the day we celebrated the day Allistaire popped out three years ago.  It was also the day she received an infusion of expanded cord blood cells.  The stem cells housed in the umbilical cord of some other mother’s child, went into my child that morning.  Isn’t that wild?  Sten and I chose to enroll Allistaire in a clinical study that at this point is looking at the safety of giving pediatric patients expanded cord blood cells.  So I tried really, really hard to listen and understand what the doctor was saying as she attempted an explanation but I sadly know most of it went over my head.  Here’s what I think I understand.  The researchers select specific cells from the cord blood based on the expression of their cell-surface antigens.  They are looking for the progenitor cells which are the stem cells that have the ability to “proliferate and give rise to functioal progeny.”  They then “expand” or grow these cells to greater numbers in the lab.  They in turn give these to Allistaire through her IV with the idea that they will produce the white blood cells our bodies rely on to protect us against all sorts of invaders which would bring us down if we were without defense.  The goal of the chemo Allistaire gets is to destroy the cancer cells in her body including those in her bone marrow.  However, in so doing, all the good cells are destroyed as well, thus leaving her vulnerable.  This extreme vulnerablity is the reasoning behind keeping Allistaire in the hospital while her blood counts drop and rise again.  Many carefully thought out procedures are in place on our SCCA unit all with the purpose to minimize as much as possible, exposure to bacteria and viruses that could kill Allistaire while her body is defenseless.  The idea behind the clinical study is to use the cord blood cells as a temporary stand-in immune system to protect Allistaire while her own is non-existent.  Because the clinicians remove the T-cells that would otherwise attack Allistaire as a foreign body, the cord blood cells are no more closely matched than any other blood products she receives like red blood and platelets.  Allistaire was given a number of meds to prepare her for the infusion and many labs were drawn at very specific intervals to ensure Allistaire’s safety.  Next week, on day 15, they will draw blood to determine the amount of blood cells that came from the cord blood cells Allistaire received as compared to the amount that are her own blood.  This is known as “chimerism.”  This word comes from Greek Mythology that tells of a monstrous fire-breathing female creature composed of a goat, lion and a serpent.

The coming days and weeks are now simply a matter of waiting for her blood counts to drop due to the chemo doing it’s destructive job and then her marrow recovering to produce its own cells again.  Of course the hope is that all of the cancer cells would have been destroyed, and that only her healthy cells would come back.  In this time the most important things for Allistaire is to help protect her against bacteria and viruses and to support her body with red blood and platelets as she needs them.  Yesterday she received her first transfusion since since coming back.  She gets transfusions of platelets when her count gets to 10 as they did yesterday, and red blood transfusions once her hematocrit reaches 20.  I expect she will need red blood in the next day or two.  Today marks 12 days since she began her chemo regimen.  Sometime between day 28 to day 35, she will have another bone marrow draw to determine the amount of any remaining cancer cells.  She may also need to have a biopsy of her back and or lymph nodes.

Allistaire is doing really, really well so far!  She has not thrown up so far.  Last time she only threw up once, and that only after I pushed her too hard to drink too much milk.  The last time she was weighed, which was several days ago, she had not yet lost any weight despite not really eating much food.  This time around, I have decided that while I will continue to work to strongly encourage her to eat, I will not push as hard.  I tell her, “you can either eat the food with your mouth or the doctor will put a tube in your nose so the food can get into your tummy through your nose.”  She usually looks toward the door of her room with fear in her eyes and puts a bite of food in her mouth.    She has really been enjoying playing all sorts of great games on her new iPad that Sten’s company, Beartooth Capital, purchased for her.  They have been so kind and supportive to our family and we are immensely grateful for them!  Allistaire has also had the opportunity to try out painting thanks to the sweet Art Therapy volunteer, Annie.  She continues to get out and ride bikes and push around her stroller and thankfully, enjoys the Purell hand sanitizer dispenser so much that she runs for the sanitizer many times while we are out of her room playing.

I am going to wrap up this post with a whole bunch of pictures because Solveig, Grandma JoMarie, Uncle Jens and Aunt Jo are only about an hour away from arriving to visit for the week!  We are SO excited! Oh and “potholes,” that’s what we call belly buttons.  Just so thankful to know that Allistaire’s pothole is evidence of her coming from her me – the joy of giving birth to her 3 years.  Also, so thankful to whoever that mom is that decided to give away the cord that gave her own child life, to help the life of my child.

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4 responses »

  1. Jai you asked for suggestions Ipad apps. My friend Ally has a 3 year old and she said Lane loves Team Umizoomi, Nick Junior, and Dora.

  2. Only three years old and Allistaire’s eyes already seem to hold the knowledge/experience of someone much older. I’m so glad she is handling the treatments better this time. Praying for many more Happy Birthdays in the future for all of you together! Carol Sanford

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