After 17 days of being at sick kids we were discharged this past wednesday, only to be re-admitted the following day as Maya was dehydrated and her electrolytes were pretty low (potassium, magnesium, phosphate). It was only a two night stay as we were discharged on saturday afternoon. ahh the joy of driving home with my little one.
On Sunday we slept in, as it is the case every first day we are back from the hospital, and then Maya started complaining that she was too weak to walk. Kirby and I exchanged a look, a silent look that said we were worried, scared. Yes, our lives are full of worries now. We always need to be on alert.
By monday morning she was walking and happy to go to Sick Kids for blood work. It is a bit weird but it has been 10 days since she finished cycle 3 and she has not become neutropenic, at least not yet, although her platelets and hemoglobine are low, but not that low to get a transfusion. While waiting for the blood count at sick kids, Maya happily did some crafts in the main floor, Sick Kids had an event going for Victoria day.
Maya is now getting hydration overnight, we have boxes and boxes of medical supplies, we have quickly learned to flush Maya’s lines, give her G-CSF (injection to increase white blood cells), connect her to the IV machine. Kirby is Maya’s nurse at home, my job is to do her sausage, this is the gauze that covers her lines.
While Maya is getting used to all these procedures and can explain in detail her cancer, she gets very anxious when there are possible pokes like getting a new enseflon for G-CSF in her arm , which is done weekly (in this way the daily G-CSF injections are done through the enseflon, meaning that Maya does not get daily G-CSF pokes on her skin), and when dressing changes of her central line are done. Dressing changes for Maya are long and full of tears. Kirby and I take turns to remove the big tape with remover, and then the nurse will desinfect the area and put a new tape. Maya will scream and get very upset.
I remember the first weeks when Maya was diagnosed, when it was time to change the enseflon Maya would cry and cry and say to me “mom please defend me, fight the nurses, do not let them hurt me, let’s run away”. Her words would break my heart because I could not help her, as these things have to be done, but yes I so much wanted to tell everyone there, please leave my daughter alone.
I wanted to say thanks to friends, neighbours, and family for all your nice gestures, your visits, the food, the presents for Maya, (she is always excited to open cards), and this past weekend the cutting of our lawn, thanks soo much!!. [KHK] You’d think my strapping young lad would take care of things like that 🙂 [KHK] Taking care of Maya, the visits to the hospital, take a toll on us, so there are times that we are so focused on just getting through the day, that perhaps we do not reply back to an email or we do not say thanks right away, please do not take it the wrong way. Your gestures mean the world to us, it is what helps us through the days.
Anyhow… tomorrow is back to Sick Kids for blood work, most likely Maya’s magnesium will be low as it is hard to give Maya any oral suplements or medecines, she throws up every time when she does not like something. On the good side, Maya is back to being herself, a lot of laughs, arguing :-), and just being Maya, filling up the house with laughter and life. Her appetite is back, but she is very stubborn and picky when it comes to food, but slowly we are changing Maya’s diet, she is getting a lot of vegetables and fruits -things that she does not like, hidden in her food and juices. We have also gotten rid of all plastic utensils. Maya misses her plates and cups, but I heard her explaining to Karen that we do not have plastic plates and cups anymore as it was not helping with stopping her cancer… ahh my little girl