After cycle 3 we were home for 15 DAYS!!!!, this is the most time we have spent at home since March 25th. We had a great time. For a while, especially the last week it was like cancer did not exist. Taylor had friends over for a sleepover one weekend, Maya went to wonderland, attended 2 birthday parties, and organized a surprised birthday party for her mom (me :-)). She was sooo excited with the preparations and kept on telling me that she had a secret she could not tell me.
Maya also went back to her ballet school for a class. Maya has been attending the Body Language Academy of Dance since she was 2 1/2 years old, and she was sooo happy to see her little friends and her teachers again. While watching her dance, I could not help but cry quietly in a corner, happy for her. I had images of her first ballet recital last summer, how excited she was to be on stage. This was also the first time I had taken Maya to her ballet class during this term, Karen usually takes her as it is on a Thursday, and I did not know the mothers. They all knew Maya, and were happy to see her. I could tell that the moms did not know what to say. I know the feeling, and I do not expect people to say anything, I know it is a difficult situation.
I have been writing a post on thanking a lot of people who have started fundraising for us. I will provide more details and post pictures, but a big thanks to my co-workers at Algorithmics (and their friends), Andy C and his team “Run for Maya” ran/walked the 10K Sporting Life a few weeks ago (in support of pediatric cancer), they ran in honor of Maya, Thanks soo much, it meant a lot to us. Maya got one of the Sporting Life medals with an inscription on it dedicate to her, thanks so much my friends, you were soo thoughtful.
Also thanks to my nephew Connor, who donated half of his birthday money to Maya’s fund, and thanks to all of you who have donated, we deeply appreciate your kindness. I am not one to ask for help, but when it comes to one’s child, parents would do anything. A lot of people have asked me how could they help: pray, meditate, or hope for Maya to get better. Donate blood and if you are able to, please donate money to any cancer pediatric organization, or to Maya’s fund in support of neuroblastoma research at sick kids. I wish I could tell you that all of the neuroblastoma patients make it, the reality is that almost half of all these children that achieve remission will relapse. So we and many other parents hope that our children’s stories will inspire people to donate to much needed Neuroblastoma research to improve survival rates and establish effective treatments for relapse. Thanks from the bottom of our hearts.
Cycle IV Update
Maya’s chemo started yesterday, with 3 chemo drugs going inside her, one of them having the look of a light pink/orange kool aid, ” I think they are giving me kool aid through the IV” 🙂 The first day was good, Maya was in gooood spirits, she played all day long, went to the library to pick up books. On Monday night, Maya had ONE, only ONE runny stool, and of course right after that our door had a sign for room arrest, ahhh 🙁 Maya was not allowed out of her room for 24 hours (contact precautions) , how do you keep an active 4 year old inside a room??? And of course all nurses and doctors wear these gowns when the sign is up, even Mary sunshine “The therapeutic clown” wore one when visiting Maya. Maya kept on asking the doctors, why are you wearing the funny yellow gowns?
The first day of chemo was uneventful. No nausea, no pain, we watched movies and did crafts all day long. I pleaded with Maya’s nurse to let us go outside, her bowel movements were fine (solid and well formed —language used :-)). The nurse was not longer wearing the special gown, he said yes that he was not wearing it because he did not think Maya had anything but it was the protocol to protect other children, which I understand. In any case he told us we could go to the library but not to the playroom. So I strapped Maya to her stroller and pushing the stroller and the IV pole I was ready to take Maya to the library on the main floor. On the way out there was a fire drill on our floor, so they told us to go to the play room. Sick Kids had a toy drive – the toys for the oncology kids were being displayed on the playroom. They had lots and lots of toys, big ones, and small ones, it was like Christmas time, Maya was sooo happy. Maya picked out two toys and mommy picked up some MAC cosmetics. Both Maya and mom were happy girls with her new treats on the way to the library. BTW, Maya did not touch anything in the playroom, just pointed to what she wanted.
My friends from work came in on Tuesday with some goodies, it was soo nice to see them, I miss them all. Thanks girls for your thoughts and your emails. THANKS to Sonia and all my UK friends, 1000 origami cranes came all the way from London for Maya, we were very, very touched by this (An ancient Japanese legend promises that anyone who folds a thousand origami cranes will be granted a wish by a crane, such as long life or recovery from illness or injury. In Asia it is commonly said that folding 1000 paper origami cranes makes a person’s wish come true. — I think we know what that wish is :-))
Cycle IV Update -day 2: After an uneventful night (aside of the taking Maya to pee every two hours), Maya woke up crying in pain as her wrists were hurting, doctors and nurses came in and yes, joint/bone pain is a side effect of one of the chemo drugs she is getting, after a morphine bolus, she slept until 11am and woke up happy and cheerful. Her room arrest has been lifted as well , yeahh. By 1pm Maya complained of nausea, and they gave her some ativent on top of the ondasetron she already gets every 8 hours. Maya has no appetite today, (Kirby do not read this :-))but she did eat a small bag of ketchup chips , and 2 small buns with lots of butter. When Maya is not feeling well she becomes very irritated, and demanding, I want a ring pop, mom goes to get a ring pop- got a green one, noooo i want a blue one, mom goes to get a bag of ring pops, nooo i do not want ring pops, I want teriyaki chicken, mom calls Karen, please make teriyaki chicken and bring some for Maya, nooo I do not want teriyaki chicken, I want noodle soup, and so it goes.., but it will definetely end with Maya screaming “Mom you are the worst mom ever, and I will never, never love you again”, so I know she is not feeling well. It breaks my heart when she starts to feel well and she will say “Mom I am sorry”, she is a 4 year old, why does she have to go through all this crap. I freaking hate cancer, it has robbed my little one of sooo much….