Happy New Year

 

Hello

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.

 

 

 

Here Come the Holidays

Maya has been doing pretty well.  She completed the second round of vidaza with no complications.  This week She will start her third round- this time the dose  will be 100%.

Maya does not yet have a new central line, and hence she has been poked every week when she goes for blood work.  Maya is still depends on transfusions to get her platelets.  The good news is that now she needs it every 10 days instead of 7.  Is vidaza working??? we hope…

Her last MIBG  a month ago showed no progression of Neuroblastoma, and her last bone marrow aspiration at the beginning of November showed that the blasts in her bone marrow had not increased, meaning the MDS has not progressed… Yes we are thankful.  We are thankful because Maya has been able to lead a sort of normal life, attending school, and attending her ballet classes.  She is doing very well, she is full of life, full of energy and full of bosiness :-).

For me (Maya’s mom) November has been hard, I think one of the hardest months of my life (right up there with the time when Maya was diagnosed).   As many of you know, my Dad had been battling multiple myeloma since March 2009.  My Dad passed away a month ago on November 3rd.  Although he was ill, the news shattered my world.  Once again I was reminded not to take life for granted.  His passing really shook my core.  The feelings of pain, the frustration of time lost due to the distance (my dad lived in Ecuador), the words that were not said on time have been very difficult to comprenhend.  The weeks after I often felt  like a zombie walking without knowing where to go next.  I had a severe anxiety and stress episode and  had to go to emergency one morning ( a similar episode happened a few months after Maya was diagnosed).  Life has not been easy, and there are a times that I look myself in the mirror and I only see pain and sadness, I cannot recognize myself….at the same time I remind myself that there are many things to be thankful for,  that is that Maya is doing well…. at least for now she is doing well, now the present is all that matters.

There are many nights like tonight that I am wide awake, my mind does not settle down, there is fear and hope. I lay awake thinking what if the Neuroblastoma decides to make an appeareance, as Maya technically is battling both NB and MDS, what if , what if…I try to not think about that but just focus on today, on now.   My life revolves around Maya, and the thought of not having her really is not something I can bear to think…

I ofent look back in time and marvel at how quickly life can change.  We started 2010 with a lot of hope, we had gone to visit my dad in Ecuador in December 2009 and had spent a wonderful time there.   Then Maya was diagnosed with Neuroblastoma in march 2010.   Life as I knew it changed forever.  I wonder what 2013 will bring…  I just hope that we get to put up the christmas tree and bake ginger cookies and built ginger houses with Maya.

Maya will start her third round of vidaza this Tuesday or Wednesday.  We are trying to see if she can go to the day hospital in the afternoons so she can attend school in the mornings as she is very excited with all the christmas festivities and does not want to miss a day of school.  Maya is in her best behaviour lately as she wants to make it to  Santa’s nice list.  She warned me that if I stop believing in Santa I will only get ‘socks and underwear’ lol.  On that note, i used one of those online santa applications, so Santa sent Maya a video.  Oh gosh, i wished I could have videotaped Maya’s reaction.  Maya’s heart stop beating for a second or so, she had her hands in her mouth, she was so nervous when Santa was checking Maya’s nice/naughty meter rating.  The happiness in her eyes  when the meter went all the way to nice was just so heart warming.  But Santa was smart enough to tell her that she needs to keep up her good behaviour as the elves were watching.

I wanted to thank Maya’s teachers, her classmates, nurses, doctors, friends and family for all your kindness and all those warm gestures that you have with Maya.  We are forever thankful.   We are always thankful for your prayers, chants, good energy, please keep them coming, Maya needs them.

May the holiday season be filled with love, joy health and peace.

Some photos of Maya

Ready for Christmas -2012

Christmas 2011

 

Christmas 2010

(All my sisters, my mother, my nephew and Maya)

 

Christmas in Ecuador -2009

Christmas day in  Xcaret -2008

Maya’s second Christamas -2007

 

Maya’s first Christmas.  The first baby in the family.

Here with my sisters – Dec 2006

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