DAY -2 … Thanksgiving Blessings

Abbigail has been completely wiped out by this cycle of conditioning chemotherapies. Her skin is pale, her eyes are sunken and swollen, she has almost stopped eating altogether and has begun to lose weight already. She looks, and is, weak and frail. She’s simply not the child that I took into hospital in search of a miracle, just two and a half weeks ago. Being honest I’m surprised by how hard she’s been hit already considering her toughest treatment day is today and her post-transplant days are still ahead. I’ve spoken to other parents, I’ve read about other children, but still I expected things to be different I guess, more like her past treatments perhaps.

I find it hard to think that we have chosen to do this to her. I look back a mere few weeks ago to our little feisty firecracker wrestling her brothers, believing she will start kindergarten at her big brother’s school, and I contrast to these past few days, where Abbigail has scarcely been able to muster enough strength to speak at times and is confined to her wheelchair if I am able to get her out of bed for a short stroll down the hall to breathe. All behaviours and characteristics unseen for the Abbigail we all know and love. Nonetheless, this was a choice we, as her parents made. We chose to put her through these pains, to allow doctors and nurses to do these procedures and administer these drugs to our daughter. Her own mother and father are responsible. You cant imagine how much that realization hurts, how much doubt, fear and anger this causes to a parent. We have been so blessed that her cancer hasn’t yet warranted this traumatic treatment or that doctors did not prescribe it, however that blessing places the onus and burden upon us. We read all of the books, reviewed all of the statistics and know all of the facts; all of the cautions are etched in my brain, yet here we are. Stem cell transplant is a traumatic, immune altering, possibly a fatal procedure that reset’s the body’s immune system. Lethal doses of chemotherapy and immunosuppressant combinations are given to condition the marrow and obliterate the immune system entirely. Leaving our baby girl completely vulnerable to infection and at the mercy of her environment. She requires dozens of drugs, medications and antifungals, antivirals and antibiotics almost hourly, in addition to the daily blood and platelet transfusions to sustain her until the life saving stem cells are transplanted and engrafted within her marrow and able to produce her own immune cells once again. So if the decision was ours to subject our daughter to these high risks of morbidity and mortality, than why are we?!? The very question that haunted us and will likely always haunt us until the day we get our daughter back and her suffering is a thing of the past. OMS is incurable, it is debilitating and has robbed our precious girl of her laughter, love for life and quite simply, her quality of life. Every day she takes almost a dozen medications, some with very debilitating long term side effects of their own. Her days are often spent in a battle with herself; hurting herself and others, rage attacks over insignificant things and screaming and crying uncontrollably for hours sometimes. With each infection, fever, cough or sniffle, Abbigail experiences setbacks in her OMS progress. Her mobility is compromised, her motor skills suffer and she faces yet an other relapse that often puts her two feet further back in her progress. We couldn’t sit back and watch her suffer through these battles anymore. We couldn’t imagine her living a life this way, losing her spirit more each day, wondering when it would strike again and robbed her of her mobility, or worse, have that mobility threatened by the treatments she undergoes daily, simply to keep her brain safe from her own immune system’s attacks. Was there really a choice?

As tough as these few days have been and will be over the next month, despite the statistics and facts, Abbigail is a blessing, just as our two boys are and we are grateful for so much this Thanksgiving! We have each other, we have loving and supportive family, we have a new baby cousin who was just born, a niece on the way, and support near and far from our community, friends and strangers. We are forever indebted to all of you and we thank you today and always.

Happy Thanksgiving and thank you for always keeping Abbigail in your hearts, thoughts and prayers.

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This is only the beginning

How did the hours turn to days? How did our vibrant little girl get so lost…so quickly. Her moments of joy are becoming shorter and fewer. Her smiles not so radiant and her laughter just a little quieter. She utters only groans and whimpers of pains, exhaustion and discomfort.

We started this path towards her miracle on August 19th with 4 days of some pretty awful and intense chemotherapy to prepare her body for stem cell collection. That cycle of treatment took only a few days to start the feared attack on her cells, healthy or not. We saw her hair quickly fall out within a matter of days, she became neutropenic, febrile and consumed with numerous bacterial and viral infections and she lost a few of her beautiful pounds. We spent more than half of the last month hospitalized, in isolation, far from home and away from the boys. This is only the beginning…

Last week after being discharged from SickKids and CHEO, we travelled back and forth daily for several preparatory appointments and procedures to ensure that Abbigail’s organs, body and system are well enough to withstand the next steps towards that miracle on this journey. After an exhausting week, dozens of pokes, blood draws, nurse injections, scans, office visits and more, Abbigail and family celebrated birthdays and spent some amazing quality time just being together.

Tomorrow there are several critical appointments to be had, one will be surgery to remove her port and replace it with a central venous line which will be used during chemo, transplant and post treatments. This type of line will be a huge change for Abbigail and likely a source of discomfort, frustration and even pain in the coming weeks as she adjusts. She must endure so much…

So the journey continues, with hopes of better days, or fewer difficult ones. Abbigail is stubborn and let’s very little control her. Tomorrow she will awake from surgery and I will hold her and remind her of her beauty, strength and the bright pink body she will then have (sterile cleaner dye) in hopes of catching my breath and maybe even seeing a glimpse of our firecracker’s spirit and that contagious smile before the days turn into months.