“I have laid my child in a surgeon’s arms, I have slept upright in a hospital chair, I have listened to the beeping of machines and been thankful, I have smiled through the tears and I have found strength where there wasn’t any left. A Mother’s love is the fuel that enables a normal human being to do the impossible.”
Today as I pushed through an other day of deafening silence at work, missing my babies and torturing myself with thoughts of Abbigail facing her fears without me, she was doing just that! Abbigail, accompanied by her daddy and nana, was at CHEO for part one of her MIBG scan* (see below for detailed definition). I’m so proud of how she handled herself, with maturity beyond expectations and immense bravery I’ve never seen in her before. I am quickly becoming aware that my little girl, diagnosed even before becoming a toddler, is no longer that same baby. She gets blood work done without crying or even flinching, she has her port accessed by a large needle with little fuss and no more tears, she can push through a day full of procedures and long treatments and she no longer needs her “mimi” (blankie/soother contraption) attached to her at all times. She is growing up and I am having a difficult time coming to terms with this reality.
While other children her age were learning to talk, count, play and socialize, Abbigail was fighting for her life and relearning most infant motor skills, unable to stand on her own and depending on me for everything, just as an infant would. It wasn’t until recently that she began to step forward developmentally in larger strides and I saw her becoming a kid, outgrowing that “giant baby” persona she has been fighting to grow away from for far too long. This development is just the miracle we had been praying for, it is a small yet triumphant step in the right direction towards OMS remission and I couldn’t be happier that we have been given this ray of hope for our girl, but as her mom, I can’t help but feel a certain aching too. She has needed me for everything, and through everything for so long, that she has naturally become part of my identity and I do not know where to go from here, because she is about to face some of her toughest days thus far, as she prepares for her biggest battle with the monsters that are OMS and cancer. This will be a new battle for me too because I will have to adapt and learn how best to support and help my baby girl…who isn’t a baby anymore. All of the pains and joys have always somehow worked together to propel me through,to be tougher, stronger and to be exactly what my girl needs throughout this journey.
Today Abbigail needed me to get through the day at work so that I could hurry home and she could proudly “communicate” to me about her big brave day at the hospital; where she faced the “big orange door” that hid behind it, Scott, the nuclear medicine man and Colleen, the technician who straps her to the scanner to search for cancer in her not-so-tiny-anymore body. So that is what I did for her today…
“You do not know how strong you are until being strong is your only choice.”
***MIBG (metaiodobenzylguanidine) is a substance that gathers in most neuroblastoma tumors. When MIBG is combined with radioactive iodine (usually I123) and injected into the blood it provides a specific way to identify primary and metastatic (spread) disease and is helpful for locating both bone and soft tissue tumors. Prior to the test, the child will receive an injection (through an I.V. or indwelling catheter) with the I123-MIBG. Scans will be done 24 hours and sometimes again at 48 hours following the injection. Cancerous cells will appear on the scan as bright spots. There are also some normal organs that take up I123-MIBG and appear bright. The patient needs to lie still on a table while the scanner takes picture around the body. An MIBG scan does not hurt, but it may be difficult or uncomfortable for a child to lie still for an hour. Some children may need sedation to be able to relax and lie still for the whole test. Before and after the test, the patient will need to take an oral medication, potassium iodide (SSKI or Lugol’s solution), to protect the thyroid gland from the radioactive iodine that normally would be picked up by that gland.