It has been almost a month since the last update, apologies, apologies and thanks to all of you who have send messages asking about Maya!
Since the last update, Maya has been good, no transfussions, no tingling, no fevers, no pain, THANKS!!! Maya did go for another round of Chemo the week of March 6th, it was a good round overall , a bit of diarreah from the Irinotecan, but nothing compared to the Rhoda virus :-). One change we had is that this round Maya did not receive GCSF injections (the booster to help the white cells). Maya was happy about it, mainly because it involves putting in an encephelon, which is painful. The injection after are done through that little tube. Maya does it herself. Maya was monitored very closesly with bi-weekly visits to the clinic and her blood counts did not budge at all, which was good news.
On March 7th, Maya was 6 months post-transplant and we have taken full advantage of that, we have taken Maya to the museum, Niagara Falls, movies, play dates with friends, butterfly conservatory, casa loma, Maple syrup fest, etc, etc, etc. Maya has very much enjoyed this time.
Maya still has her NG tube which is there now for medicines, we need to start training Maya to take pills. Maya has a very good appetite and is now very concious of what is good food and what is junk food, which makes me so proud :-). But of course she is still a picky eater, and I have to be creative, like hiding fresh carrot/orange/apple juice on her homemade waffles, which she loves.
I have to share with all of you that the last time Maya had her NG tube changed, she took it out herself, gosh, I was not there Kirby was, but apperently she pulled out the tube all the way from her stomach through her nose, what a BRAVE GIRL!!!
Maya is due for another round of chemo next week on March 28th, then she has another cycle left before her MIBG scans for which we are crossing fingers. Her beautiful short hair is falling off again. Maya has not noticed it yet as it is falling in the back, she will be sad as she is so excited to see her hair coming back…. we’ll think of something so she understands what is happening.
For me, this time has been hard, in three days it will be one year since Maya was diagnosed, I will write another post on that. There are a lot of emotions, sadness, anger, but at the same time I am thankful for this time with Maya, for her laugh, for her love and for her time free of pain.
Some good news to share, Nate Hudson, another Brave little NB warrior, is NED. When I heard the news, my heart was beating soo fast, it was of pure joy and happiness for him and his family, and at the same time the news filled my heart with hope. Nate is now in NY receiving immunotherapy treatmen at Sloan Kettering. We wish you the best Nate and happy belathed birthday.
Maya and I went to a Maple fest a couple fo weeks ago, there we were so thrilled to seePaulina, she is currently battling lymphoma. Paulina looked great. Paulina is one of those women who are beautiful inside and out. When I met her, befor the cancer, I thought what a beautiful woman, and after talking to her, I thought wow, her kindness, sincerety and her gentle way of being made her even more stunning. Please pray for Paulina, the last tests showed cancer cells. Paulina you are a true warrior and our hearts and prayers are with you.
I wanted to end this blog by saying THANKS to all our family, friends, neighbours and everyone who follow the blog, thanks for all your support, our lifes are easier because of you.
And finally a funny story about little Maya. As you know Maya needs hearing aids, and so we went to Hearing Union (awesome people) for her ear molds. Of course Maya freaked, but the people there were soooo nice. It did not hurt at all, and when it was time for the second ear Maya was all smiles. In any case, we explained to Maya why she needed hearing aids (she has been saying what, what, what, constantly as she cannot hear high pitch sounds), and like some people need glasses other people need hearing aids, and with the hearing aid she would hear her mom calling her and she would not have to say what, what, what all the time. She was happy with the explanation. Later that day at home, Maya was calling me, mooooooooooom, mooooom, I am not sure what I was doing but I could not hear her, she then came looking for me, and when she saw me she said “Mom, You are the one who needs hearing aids and not me” I thought it was funny and of course I laughed. I love you Maya.