We are so excited to share with you that on November 7th our dear friends and neighbours Lucy and Linda will be running the New York City Marathon in support of the Maya Kim Fund. All funds will go to SickKids to support Neuroblastoma Research, this will help Maya and all the other kids who are battling this terrible disease. Every dollar counts. Please sponsor Linda and Lucy as they run 42.2 km to help all these beautiful Neuroblastoma children. Every penny counts. Please click here to donate.
In my last post I mentioned that the wonderful Garron family had donated 30Million dollars to SickKids for cancer research. Today SickKids placed a 1 page newspaper ad in the “Globe and Mail” and the “National Post” to thank the family. I woke up this morning to see a huge picture of my little star as part of the thank you ad. When i showed it to Maya, she was so surprised to see herself and then continued to play…. well Maya, mom and dad and your brother are very proud of you for being such a fighter and we are beaming with pride and joy to see our little hero today in the newspaper.
Update on Maya
Maya continues to do well, yesterday she was free from all her tubes most of the day. Last night was the first night Maya went to sleep with no tubes attached. It was a test run to see how her electrolytes behaved. Her blood work this morning showed that everything was good. Maya is getting 4 daily feeds of 135ml each 4 times per day through her nose tube. Thankfully she is tolerating them well, except for one episode last night. I took Maya to the washroom and she started to throw up, i quickly pulled the emergency string in the washroom thinking it was the regular nursing call button, before i knew it, I had like 10 nurses standing in the washroom. Part of Maya’s nose tube came out, and Maya freaked out, she said noooooo I do not want them to put one in again, and when I turned back to see her, she had put her nose tube back inside :-). The nurses were laughing and of course they did a test to see if the tube was in the right spot in her tummy and thankfully it was.
Last night was also good as it was the first night Maya did not have any tingling attacks, and did not require any morphine. Right now they are just watching Maya to see how she reacts to not being hydrated 24/7 and they are monitoring her pain and eating patterns. All her meds are taken orally now (well, through the nose tube), and they are talking about a possible discharge of mid next week!!!! soooo exciting. Today, Maya did require a platelet transfusion but after it was completed she went back to being unhooked from her IV pole.
Yesterday, Maya had a great day, it started with her going to physiotherapy , then taking part of a custome contest on the main lobby (7 kids in total and they all took first place). Maya could not wait to go trick or treating. At 1:30pm the BMT kids started the parade. It was wonderful to go from station to station on each floor. There were too many beautiful kids. Maya was wondering what can be better than candy as the childlife lady told her the day before that she won’t get candy, but something better than candy, and so kids got stickers, books, bubbles, erasers, little toys, stuffed animals, etc. Thanks SickKids for organizing this and putting a smile on all these kids, everyone from the volunteers, doctors and nurses took part to give the kids here a happy and exciting halloween. When Maya woke up yesterday morning, she saw her nurse dressed as a butterfly and Maya told her “You look infinite beautiful” , yep because there is nothing larger or better than infinite. My sister Horiana and her 3 year old son Sebas came and Maya had a great time with her little cousin. After two full hours of trick or treating she was exhausted and took a long nap. – see some pics below. Maya cannot wait to go home tomorrow for Halloween, she cannot wait to see her friends. She keeps talking about her little friend Bridget and also Leana, so we are very happy to take her home for a couple of hours.
Because of her VOD, Maya’s radiation will be postponed. Radiation can cause VOD and right now the doctors want Maya’s liver to fully heal before radiating her stomach area. If we proceed with the radiation now, we take the chance of damaging Maya’s liver which would also mean jeopardizing her qualification for immunotherapy. Monday we will meet with Maya’s oncologist to discuss the next steps. Please have Maya in your prayers and chants, they are really helping and she needs some help now with her future treatment.
Thank you to all of you.