I have not really written in a long time (this is Maya’s mom), maybe because I am so immersed in this cancer world that i grab every opportunity i get to just breath and pretend, perhaps, that we have a normal life….but our normal life now is weekly visits to Sickkids hospital, chemo days, and just trying to manage work and school and Maya’s care. Yes, both Kirby and I do not really take time off from work, we just make it work, we alternate time, we work from the hospital, we go earlier to the office, or we get up earlier so we get our work done, we take her to the hospital, to school, to soccer, to ballet , to playdates..yep Life is busy, but good busy.
When i look back to when Maya was diagnosed with MDS almost a year ago, I remember the despair, the tears, we felt hopeless. Maya was not making any platelets, she needed transfusions twice per week. The discussions we had with the medical team were so blunt. We could not go into transplant because we could not find a match for Maya. I asked that perhaps we could have a baby and see if the baby could be a match, they told us, we did not have that kind of time, we did not have 9 months.
We talked about using her chord blood that we banked when Maya was born..thankfully. Because Maya has had 3 years of chemo plus a bone marrow transplant that almost killed her, the message was, it woukd be a ‘flip of a coin’, basically 50% chance that she would come out of the transplant alive…. That was almost a year ago… more than 9 months, and She is still alive and kicking, kicking hard.
During those dark times, I remember asking God to let us get to halloween, and we did, then i remember asking to let us get to Christmas, and we did, and then i asked to be able able to celebrate Maya’s 7th birthday in january, and we did, and then a miracle happened. Maya started to make platelets, she had no more blasts in her bone marrow, the translocations were still there … but then the translocations dissappeared….. I do not know how to explain this. Perhaps she will relapse as the doctors say. But they have said many things, and for now we just live life and enjoy every minute.
Maya has been doing GREAT! Every day i wake up and i see her, I feel so blessed. I remember also asking for Maya to finish grade one, and she is about to do it…. I know that there are not many believers out there…for a while i was angry at God too, but now He is the only hope i have, my faith and the believe that God will find us a way… and perhaps my Dad, another cancer warrior, who I am sure is looking after Maya from up there…
Of course when the the different possibilities of what could happen to Maya play in my head, it is just painful, and so i try not to do it, but sometimes we have to in order to look, search and plan for next steps…
This week was hard, an ultrasound we did to see why Maya’s creatinine was acting up revelead that perhaps there was a new mass , or maybe it was there before… The report did not confirm either, it said to follow with further imaging. I remember looking at the mirror, and all i could see was sheer terror, fear, panic, anger…Is the NB acting up after two years of just being there? … We continued to do our best to have a normal life. An MIBG was done, we were desesperate to know the results. They did not see anything new…pheeew, however they said a bit more uptake in the back and in her tummy, what does it mean? The Doctors are not worried, an MRI will be done in the next week or so. I remember a year or so ago, MIBG scans showed that there was less uptake on some of the spots… we wanted to happily jump, but the doctors said there was not literature out there to say less or more uptake meant less activity or more activity…should we take it the same way now?… well, I need to see that MRI, we cannot just rest and hope for the best.
Maya for now has had a wonderful quality of life, no pain, has put on some weight, her hair is back ,although it is thin, she still loves it. I was able to put it up on ballerina bun for her ballet recital rehersal yesterday :-), and yes, another ballet recital, another year. I think I will keep on asking for more milestones, for more years. This is Maya right after the rehersal yesterda June 20th
I know that there are a lot of families, specially NB families out there that follow Maya’s blog. We follow your blogs too, and one of the reasons we have this blog is to give back what we got from all of you when Maya was just diagnosed. We franctically read everything, how the kids were doing, what were their reactions to chemo, what were your tricks to take pills, etc, etc. Hopefully we are doing the same. Even though we may not have met, we know of each others kids, we cheer for them and also cry at night for them, and we pray. Maya prays for so many kids at night, she does not even know them, and I just keep adding more names to the list…..
I wanted to say THANK YOU to all of you for your prayers, your chants, your positive energy, I firmly believe that they are working, , please continue to do it for Maya, she needs it. The battle is not over, we just hope that NB and MDS are too weak to fight and that slowly but surely we”ll get rid of it.
For all those cancer moms out there, yes life is not easy, as a matter of fact life is hard, and yes Cancer comes and tries to take not only your child, but everything else around it… It is a battle we must fight, and yes there are days I think I cannot get through the day, and yes there are days that I just feel sorry for myself, but I know those feelings would pass and that I would overcome those and be stronger and ready to smile at life. Being busy works for me ….. Sometimes I feel I am crazy for taking on so much (Yes I decided to go back to school), crazy because i have only slept a few hours and I need to keep on going, …. but being busy, keeps me sane, the moment i relax, panic sets in… Being busy works for me now that Maya is doing well… and so we continue to fight!
I wanted to share with you some photos of Maya from the last couple of weeks.
|Maya at Jake’s 10th birthday Party, June 2013 – www.jakesteam.ca|
|Maya at the soccer field – May 2013|