I hope you all had a wonderful holiday season. Maya’s was certainly a very busy one. She completed her third round of vidaza, this time it was 100% of the dose, with no complications so far (crossing fingers), not even nausea, and her hair, her hair is still growing. In the middle of her chemo cycle she even took part of her school’s Chrismas concert (with the IV on her hand), attended several birthday parties, and helped baked and decorate a cake for Taylor who just turned 17!! time flies! We are all very proud of our kids.
I wanted to provide with a quick update before the end of the year.
Maya continues to be platelet dependent, and yes we count all blessings, we are so blessed to be here in this country where blood products are so ready available and thanks to the health care system at no cost. Can you imagine having to pay roughly $1600 for every platelet transfusion? Maya needs one every 10 days, as she is not producing platelets due to the MDS. Yep, that is the price, at least that is what we got charged in the States this past summer when Maya had to get a platelet transfusion. Also I wanted to take this opportunity to say THANKS to all of you who have donated blood. You are doing something GREAT, saving lives! There have been many times when people ask me how can we help, you can help by donating blood, there are many kids out there that require blood products on a daily basis. I remember when Maya had her bone marrow transplant, she had transfusions daily, either platelets, or blood, or any other blood product. so THANKS to all of you from the bottom of my heart.
Maya still does not have a central line. She had one for 2 1/2 years, which made life so much easier, we were able to avoid pokes for so long. However, as many of you know, back in October her line had to come out as she developed an infection. She is on the waiting list for a new one. Not having a line means that Maya gets poked every time she goes to clinic, one or twice a week. And she needs to have an IV put in every 10 days for platelets. When she goes for vidaza cycles – 7 days, every 21 days – an IV is put in, and we hope and pray that her vein would not collapse and that it would last for the 7 days of her cycle so she is not poked again.
Maya’s vein are so tiny, it is difficult to get one, and so at SickKids the IV taam is called every time she needs to be poked. Even with the very competent IV team, sometimes 2 or 3 pokes are required before they get a good vein, and this is sometimes a 1 hour process. I am in awe to watch my daughter go through all of this. She does not longer cry, but does say that she is scared, and gosh I am scared too, who would not be, nobody likes to get poked, but there is no other option than to be strong for her. We do many things for our kids, things we never knew we could do, all for love, yep, all for love. This past Thursday, Maya had to go for a platelet transfusion, to get a vein took a long time. I was told that it was becoming very difficult to get a good vein. Her veins are developing scar tissue with not enough time in between pokes to heal, and since she is being poked so often there will be a point when we hit a wall. So Maya needs a central line asap. But before that we will make sure she enjoys a lot of swimming.
Overall Maya has led a very active life, going to school, going to her ballet classes, playing with her friends, and whatever other activities we can squeeze in. A happy child, always with a smile, what else can we ask for? A happy child who I admire so much and love so much.
The first week of this new year will be a very busy one. Maya will turn 7!!! , Maya is extremely excited. Unfortunately on her actual birthday Maya will be at SickKids on her 4th round of vidaza, but we will celebrate it with her friends the weekend after. Gone are the days when I could just plan a birthday party, Maya is very specific about what and who she wants these days. Maya will also have a bone marrow aspiration to check how her bone marrow is doing, we pray for no blasts!!!! we hope for 0 blasts, but will be happy with ‘no progression’. At the end of January, there will be more tests to check on her Neuroblastoma , the usual CT, and MIBG scans. Gosh, this makes me so anxious, and if you can my friends help us with a prayer, chant meditation so the Neuroblastoma continues to be dormant and does not decide to pay a visit again 🙁
2012 was a very tough year for us, but we also had wonderful and very happy moments. We cherish those happy moments, and hope for many more of those. If anything we live life enjoying and being thankful for every day.
I wanted to say thanks to all of you, to the community, to the parents and teachers from Maya’s school for all your support. We have received so much from you. It means a lot ot us. Thanks from the bottom of our hearts.
Wishing you and specially our dear cancer families a happy 2013, a new year filled with love, more love, peace, and HEALTH, and why not dream of a cancer free 2013. God Bless you.
Below are some pictures of Maya taken in the last few days…. Yes! we had snow in Toronto, Maya could no be any happier.