DAY +18 – The road less travelled

Would you believe me if I told you my neutropenic but afebrile girl was sick? If her vitals were only slightly elevated would you think I was paranoid? Do you think you know enough about OMS because you read an article and a few pages of her chart? What if I insisted something was wrong, would you believe me then?

Abbigail is 1 in 10 million! She defies all odds and sneaks within every minority she possibly can; always the star of the unlikely and rare! It is near impossible to apply any expectations to her recovery post transplant and if she can, she will take the road less travelled! She’s a true warrior, paving her own way and leaving her mark. She doesn’t need to scare us as much but we are proud of her always, blessed and honoured to be her parents.

A week ago I was running on little sleep, no calorie intake and likely only enough water to flush out the caffein that was keeping me going. Abbigail was a mess. I had shared with you the devastation and fears I was facing as I watched her battle what I described as her worst relapse of OMS, something similar to the first days post diagnosis. My heart was in disbelief, but my gut and instinct told me she was ill. Any time Abbigail is nearing any infection, whether a cold, flu or urinary tract infection, I always “know” before any medical signs, symptoms or tests. I always speak as though I too am going through treatment, not to take away from the trauma our girl has experienced, but I feel connected to her in such a way that I feel her pain and truly know her on a level I can’t explain. I knew that despite her fevers, lab tests or vitals, that my daughter was not well. I was reassured over and over, as I rang the nurses bell or paged the doctors to return and exam her, that Abbigail is doing relatively well and that she shows no signs of infection. I was never reassured. I continued to monitor her vitals on my own, take lots of notes and continue to show concern to anyone who walked in our room. There were many long days and nights I feared for Abbigail, that her unique presentation would hinder her transplant recovery and possibly cause her irreparable consequences.

Tuesday morning after rounds, my instincts were confirmed; Abbigail’s virology lab work found she was fighting a dangerous viral infection that could threaten her life. My heart sank…the words mortality are too often spoken about on the transplant unit and when it is in context of your own child it is paralyzing. The “signs” and “symptoms” I was seeing over the past week were confirmed to be a result of her body trying to fight a virus that she didn’t have the ability to fight, hence the severe OMS. I have to explain that the medical professionals did not have grounds for worry because Abbigail did not have any scientific or medical evidence of infection…all she had was Mama’s instincts and knowledge; a three year honorary degree granted through a three year long, 24/7 placement in the field. Although doctors are aware of the rare possibility that because Abbigail has taken high doses of oral steroids twice daily for three years, that she may potentially not produce a “fever” to signal infection, they did not realize that this is what was happening over the last 10 days. Abbigail generally has a cool body temp and so when she hits 36.5-37F I know as her expert that she is likely fighting something. Anyways, she was indeed fighting something, and that something has her at it’s mercy.

Abbigail is at day 18 post transplant. Although every child is different, especially Abbigail, we expected her to have recovered by now, or at the very least begun engrafting to signal that her marrow has accepted the transplanted stem cells and is making it’s own cells. That hasn’t happened yet. So she still does not have the ability to fight any type of infection and remains in BMT isolation.

This virus is now taking over in her stern but frail body, and this week we found out it has infiltrated her organs and is passing through her stool and urine, indicating that it has progressed significantly this week.

She has begun treatment, however this treatment is also a huge risk and danger to her. The drug she is receiving, to help her body manage the virus, is a cytotoxic carcinogenic, which quite simply means it is toxic to her organs and is known to cause cancer. This drug causes kidney damage, resulting in dialysis or transplant and can be the cause of secondary cancers to her. You can probably safely assume that it was not easy hearing that the only treatment to potentially help our daughter fight and live against this virus was also likely to cause further damage and life altering morbidities. We started the treatment, along with the other precautionary medications, and although Abbigail is responding physically, the viral load is still increasing. This treatment will not kill the virus, the hope is that it will tame it enough to allow Abbigail to produce her own fighting cells to kill it off. This could potentially take weeks and months. The virus is killing her cells and the medication to tame the virus is also attacking her cells, making her weaker. Unfortunately, the only natural killer cells that kill this virus are the cells that we purposely eliminated from Abbigail’s immune system last year because they were the main cause of her OMS. Here Abbigail goes again paving her own path! The cells we killed to help her OMS are the cells we now need to save her life.

I have far too much medical information and knowledge about this and could write you a novel, but all you really need to know is that Abbigail needs your prayers. She is fighting hard! Between her resting and raging, crying and the doctors and nurses monitoring her, she still has moments of joy and that I am grateful for. She still shares her smile and screams for her favourite nurses to come sit by her side. She still shines and shares her spunk when she can.

IMG_6836.JPG

IMG_6835.JPG

Halloween was a good day! Although she couldn’t leave her isolation room and participate in the hospital trick or treating events, she managed to lure the candy, treats and tricks to her bedside! She had a blast and when she finally settled and fell asleep she had a well rested night and smiled this morning as she woke!

The road may have gotten longer, darker and curvier, but Abbigail is a force that no one has ever witnessed before. She can beat this!

Thanks again everyone who has been messaging me, commenting on my quick posts and prayer requests. Thanks to so many people, organizations and groups who have been fundraising and donating (www.YouCaring.com/KissesForAbbigail), the burdens are easier to face with some extra help! Thank you to those who brought me snacks and “drinks” and also thanks to everyone who has been cheering Abbigail up daily with the mail they have been sending. Every morning she looks forward to checking her mailbox. Thank you!!!

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.

https://www.youcaring.com/fundraiser-widget.aspx?frid=211166

IMG_6123.PNG

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.