Her Journey Continues…

Who's sick? This girl is a firecracker! {3 weeks in hospital - February/March 2012}
Who’s sick? This girl is a firecracker! {3 weeks in hospital – February/March 2012}

No evidence of disease…what does that mean? Simply put, in Abbigail’s case, at the time of the scan there was no detectable cancer cells. For that small moment, we could breath…until that moment passed and we were reminded that the next moment could hold a growth spurt for an undetectable cell they maybe missed. Then we held our breath again. For some childhood cancers, these scans are performed numerous times a year and for several years past remission and for others life can begin to simplify again and this scan means the start of something new. Abbigail has had her body scanned every couple months since last February and we continue to receive those quick gasps of air, the difference being that each of those gasps where never of fresh air. Abbigail’s reality is not so simple. Without medically boring you, her tumour was “unfavourable” with many markers that would indicate that if she did not have OMS which led to the early detection of her cancer, she had a high probability of being full of cancer throughout her body by the time we would have “found” her tumour because of its “type” it held the chance of being a tougher battle….which could have taken many more months or even years. This being said, as we know, Abbigail is one in ten million, so everything that the very few articles and studies are saying about Neuroblastoma Cancer and OMS does not seem to be ringing true for Abbigail. Most children with OMS tend to have a lesser evil cancer, Abbigail’s as I mentioned was not the case, and so we continue to fear relapse. So we continue to lose sleep when she gets a tummy ache, thinking the tumour has reared its ugly face again causing her cramps, or that her swollen lymph node under her ear is reason to believe that “IT” has spread. You see, as an oncology parent, nothing is simple anymore, not even after the cancer has left the body. There is no such thing as a simple tummy ache, headache or flu and all fevers tend to become ER visits due to the state the chemotherapy has left our child’s immune system in because as we learn when we become a part of this ever dreaded club, infections and late effects of treatments take our children from us too. We have to think twice about every simple symptom our child complains about or doesn’t, then that fear returns, the heart palpitations take over your body and the anxiety kills you inside. You are brought back to that very day they so simply stated that the innocent baby you are holding has cancer. I do not know how to describe this pain, this ache and gut wrenching feeling to anyone who has not suffered such tragedy. I honestly do not think it is easily explained because even us feeling it do not have the words for it…it is just felt.

I posted a few days ago that Abbigail’s recent MRI scan came back “cancer-free” and as true as that is and as wonderful and as relieving this is to us as her parents, this is not her end. Her scan showing “no evidence of disease” was a hurdle happily beat but this is not even her toughest battle. Abbigail may have fought her battle with cancer last year and as I have written and reminded myself many times, her cancer left her body when they removed her tumour, but she has a long road ahead of her still. That feeling that I explained above that never goes away, that fear felt when your child says their tummy hurts, those are real, true and grand. I feel them everyday as I watch my darling little girl fight with herself. In our home, we do not only fear the cancer returning, we fear her OMS is attacking her brain again and again and we are brought back to that sad day in February when she went from an average toddler to a tragic infant unable to control herbown movements right before our eyes. With each scream my daughter makes, with each abnormal eye movement I witness and every trip or fall, I analyze and wonder if it’s sneaking back up on us again.

Sweet moments are made even in these settings {June 2012 Chemo #4}
Sweet moments are made even in these settings {June 2012 Chemo #4}

Yes, Abbigail was free of evidence of disease on February 25th 2013 at 2pm when they completed her MRI scan of her head, spine and pelvis! Thank you for all of the wonderful wishes and sentiments, we truly are blessed to have such amazing family and friends and even support from strangers, but I feel as though I may have mislead you to believe she has been cured of her illness or that she has beaten the beast that we call OMS. This cancer-caused disease will follow her for her entire life, she will live with the sequelae of not only her current treatments and what they are going to do to her brain and body but she will also live with the constant relapses and life altering conditions that OMS causes. Abbigail may be cancer-free today but she is not free. She will endure months, possibly years of intense treatment before she can reach a neurological remission (simply stop the brain damage), where she will then have to continue to battle the symptoms, because there is no cure and hope that the next cold or flu doesn’t send her back to crawling or slurring words and more intense chemotherapy and immuno-supression.

Daddy Snuggles Melt her Fears Away {Diagnosis}
Daddy Snuggles Melt her Fears Away {Diagnosis}

We are not giving up and we will not let this beat us, but it is not an easy road and it is not easy to watch our baby girl go through the things that she does. I can’t even say out loud some of the things I must give permission to doctors’s to do to my baby girl because it makes me ill – so please do not stop praying for our little girl, she needs you more than even. She fights harder and harder everyday to get through the next and she deserves all of the support we can muster.

4 thoughts on “Her Journey Continues…

  1. Thank you for sharing your journey. I can’t even begin to imagine what it would be like to walk in your shoes. I think that Abbigail has been blessed with two wonderful parents. Sometimes life takes us down roads we never expected to travel and they are too difficult to imagine but we have no other option than to walk ahead. You become experts on the subject and meet people who never would have crossed your path. Your willingness to share in such an open and honest way gives insight into this complicated illness. Be kind to yourselves and lean on others for support. I pray for strength for your family, healing for Abbigail and send my love.

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    1. Thank you so much for reading and I appreciate the support for both Abbigail and our family. I truly believe that I am blessed to have my sweet little girl in my life and although it is tough and painful at times, there are also times of sheer joy that are more than enough to get me through the difficult times and I could not imagine life without her. I squeeze her tightly any chance I get an remember she is ours for a reason.

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  2. As a grandmother , Abbigail story brought tears to my eye, That little angel is such a courageous little fitgher. And to you mommy and daddy, i wish you all the courage and the forces that you need. I will pray for all of you and Abbigail. Kisses to your other children as well, I am sure it is not easy for them. Kisses and Hugs to all of you but special one to Abbigail. My prayers are with you. Sylvie

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