We've been home from the hospital for 2 weeks now-it's been an adjustment. Since we need to watch Keian closely for certain effects, we opted to move our bed into Keian's bedroom-so, we now sleep as a family of 4. I actually don't mind it, it gives us peace of mind and I admit that I adore waking up to my little boy smiling and waving at me from across the room<3 So far, our nights have been somewhat event free, which means we are all getting a good nights rest-even Joren seems to be allowing us to sleep a bit.
Keian gets his medicine twice a day from us at home-admittedly I am NOT a nurse and was so nervous the first time I had to give them to him. I know that these medicines are getting rid of the "sick blood". He goes to the Oncology clinic every Wednesday to get his IV Chemo and his Lumbar Punctures/Bone Marrow Biopsies (which tell what his blasts are in his bone marrow and CNS). I thank god that they inserted a VAD into his chest (a port that is inserted under the skin in order to deliver the medicine-then he doesn't need constant painful pokes in the arm) The day he was diagnosed, his numbers were very high. 80% of his blood and marrow contained Leukemia cells. As of last Wednesday, that number has significantly decreased down to 4%-he is now considered a rapid early responder, which means the chemo is working! His blood work is holding stable, so far. He has required quite a few transfusions since admission to the hospital, but so far since being home, he has been stable enough to hold his own. Super Keian and Kaptain Lasers sure make a good team...
He's been complaining a lot about a sore tummy and bones in his legs-all of which seem to be side effects from the drugs. He's extremely tired, so we have a lot of movies in bed and cuddles - I don't mind that at all. He picked out a pretty cool wagon with an umbrella over it for days that he wants fresh air, but is too tired.
Having a nap with Joren
We met with the Radiation Oncologist on Thursday, but until they have the definitive results after his next BMX (Bone Marrow Biopsy), they won't know when they will start the radiation, nor will they know the exact plan - they say in a couple weeks we will have more answers.
Last weekend, we started to notice some thinning in his hair, so we arranged a Shaving Party for him. He had an incredible time getting his head shaved with a few other brave guys:) Afterwards, he had his big surprise-Grandma and Grandpa got him an ATV---he is in LOVE with it. Helps to brighten his bad days!
The BEST smile EVER
Devan,Daddy, Grandpa, Allan and our brave boy
sporting their new "hair"
This last 3 days have been really good days for him. No nausea, good spirits and happy smiles. I know all days won't be like this, but the more good days he has, the more strength he will build for the days he needs it. Due to the steroids, his appetite has increased dramatically and he has the cutest puffy chipmunk cheeks. Those side effects should diminish shortly after discontinuing them.
He is an amazing little boy and we are the luckiest parents in the world to have him as our son. We will never give up and we will never stop making the best out of every day. Some day soon, we WILL be saying bye-bye to Cancer.