6 March 2013

Heavy hearts...

Keian was discharged last Monday - his counts were so great and we were all beyond happy that we had a lot more time than anticipated prior to transplant to brighten Keian's days. He also had some wonderful surprises that arrived by mail from some special people in our lives, as well as some very special girls that have never met Keian and sent him some paintings! He loves all his mail and they are all with us in the trailer. Much of last week was filled with days of organizing the trailer and finishing up last minute things at the house, as well as numerous appointments to get him ready for transplant. On Wednesday, Joren was assessed in clinic and we were informed that he would not be able to bank his own blood in order to treat his anemia once he donates his stem cells to Keian, as the needles used for collection were too large. Instead, they opted to begin a regime of iron so that he will have an extra boost. We hope to avoid a transfusion, but there would be no other options if it were necessary.

Thursday was an extremely emotional day - honestly, most days around here are. We had our family meeting - present was Keian's Oncologist, his Radiation Oncologist, our Psychiatrist and the Transplant Nurse Coordinator. We went over much of the information that we knew, but there were some new things held amongst. Keian has had prior white matter changes, 2 in fact. They have compared the prior MRI to the one that was repeated during his recent hospitalization and there has been a new change - likely additional methotrexate toxicity. This complicates things, as the Radiation Oncologist feels that due to this, Keian is at an increased risk for neurological deficits...only time will tell. Monday was a dreaded trip to the cancer agency for his radiation planning, measurements, CT and protective mask forms. We stood there helpless as our little boy was put to sleep. We stood watching, as he had bright red beams running across his body in order to create marks for his radiation. After this draining day was over, I had a wave that hit me and I couldn't stay afloat. The negativity just overwhelmed every single feeling I had inside me. I should be thinking about how my little boy will beat this and be soon running on his feet teaching his brother how to play baseball - this has been extremely hard to imagine lately. The list of "possible" side effects, "likely" side effects and "almost definite" side effects is completely overwhelming. The emotions that run through is literally like I'm being burned alive. Really, I would rather that be the case than what we are truly facing. Keian will almost definitely never be able to father a child, he will almost definitely have numerous organ deficiencies over the long term, he will almost definitely have a learning disability (how minor or severe will be determined as time goes on, as it can take a year or more to show these changes), he will likely develop thyroid cancer and meningiomas (a thickening around the brain) that will have to be surgically removed later in life. These are yet a mere few in comparison to the possibilities that have been laid out.

Keian's favourite restaurant is East Side Mario's, and since the location in Langley closed it's doors, he's been worried he would never go again. Since he was feeling so good and we felt we needed a cheer up day, we took him to Lonsdale Quay to look around and go to what else other than his favourite restaurant! Since they opted to keep his NG tube out until next week, he was so happy to be able to eat on his own. And eat he has done. This last week, he's put on close to 1.5 kg!

Yesterday was our scheduled clinic visit so that Keian could undergo a bone marrow biopsy, lumbar puncture and intrathecal chemo. The good news is that Keian is still in remission!

It is with an extremely heavy heart that I write this tonight. Keian is laying in a hospital bed beside me. At 4 am, he woke up vomiting and immediately screamed that his head hurt extremely bad. I noticed right away that he was burning up - his fever was over 39. His counts are good, so we couldn't figure out why. I called the Oncologist on call right away and took him immediately to emergency. Being in the trailer may have just saved Keian's life today. After an LP came back cloudy with a WBC count of over 2000 in his spinal fluid, he has been diagnosed with bacterial meningitis. Only an hour ago, he was shivering, curled in a ball, with a consistent severe headache, stiff neck and vomiting. Meningitis is an extremely serious life threatening condition and unfortunately my sweet little boy that I can't stop looking at is living with it this minute. He is being covered with 5 different medications, 3 of which are strong antibiotics. His headache is so bad that he requires an intermediate dose of morphine, which puts him in a pretty sedated state. His eyes are incredibly swollen, for which I assume is because of the cranial pressure from the meningitis. He is hooked up to a monitor to make sure that if he is sleeping that he is monitored for heart rate, as the nurse told me that as symptoms progress, they fall into a deep sleep and may be extremely hard to wake.

Besides the complications meningitis can bring on it's own, this will also delay his bone marrow transplant as they are unable to go ahead with it when he is this un well.

We are strong, but how much are we expected to take. This little boy is so brave, this little boy is the light of my life, this little boy is fighting so hard, this little boy loves to laugh and giggle, this little boy needs all the love his heart can hold, this little boy is mine and I will fight until he is back in my arms...healthy.

Now is the time we show everyone how even the smallest star shines brightly in darkness, my boy. You may be small, but you shine brighter than anything I have ever seen or experienced. I'm right there shining with you<3

8 comments:

  1. I have been following your blog for the past little while. You are such a strong mom and your little boy sounds like the most incredible fighter. My thoughts are with you, Keian and your whole family. You all deserve a much needed break from everything handed down recently.

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    1. He is a true fighter...in every sense of the word! I appreciate your kind words and thank you for your support and encouragement so very much. You'll be seeing a lot more fighting in the near future...we will not rest!

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  2. Oh Chantal, I can't even imagine. I send you all a huge hug and an especially big one for Keian (could you make sure he gets it for me). I pray for him and all of you every day. I love you all and wished that I could do more to support and help you. Keian, again, you are my MHK and Mom and Dad and Joren you are all the perfect family for Keian. May you find strength to keep you going. You are all loved by many.

    Sheila

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    1. I definitely will, Sheila...thank you<3

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  3. You don't know me, but I know your story through Megan.... I think of you all a lot and have been praying for you! The strength of your love that comes through your writing brings tears to my eyes :) Keian is such a fighter! I pray that those negative feelings that come up will be overpowered by positive ones, and that Keian will be given the strength to fight this infection! Stay strong, Momma- you're doing great :)

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    1. Thank you so much, Lisa! It's my little guys strength that gets me through! It means so much to have the support we do from wonderful people like yourself...from the bottom of my heart...thank you!

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  4. Chantal tons of love and prayers to keep strong and brave for your wonderful Keian. You are always in my thoughts. Love Auntie Pat.

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    1. Thanks, Auntie Pat - keep them coming! Love you<3

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