Sunday, April 3 – roller coaster of emotions

Maya finished her 5th 1 week cycle of chemo (Irinotecan and Temodal)  this past Friday.  The first day was busy as usual, with blood work, waiting for blood count results and the looong 3 hours that Maya has to be NPO prior to receiving the first chemo (Temodal) and then an additional hour without eating.  Those 4 hours are the longest as Maya gets hungry, very hungry and irritated.  We have to bring a lot of magazines, activity books, toys to keep her entertained.

The second day was scary.  As soon as the Irinotecan infusion started to run, I noticed that Maya’s behaviour started to change.  Maya was bossier than usual, and got frustrated with the food, it was not what she wanted.  Then she wanted to go to the washroom and things took a bad turn.  Maya started to scream, she wanted me to squat and then hold her, and if I moved she would start screaming and crying and she would scratch me.  Something was bothering her but she could not articulate what was wrong.  She got very angry, she was enraged.  Maya was an angry child.   Karen quickly called the nurses, including Maya’s NP and Maya wanted to hit them and kick them.  Maya would say, mom help me, help me, but she did not say how.  All i could do was hold her tight.   She got very itchy and her skin had lots of big red bumps.  Benadryl was ordered but before the benadryl was given, Maya started to come down.  I think I squatted for 20 minutes, not sure how I managed to last for so long, all i wanted was for my daughter to feel well.  I also felt so powerless, there was nothing I could do but give her my love, hold her tight, tell her that it would be ok and wait for the doctors.

I am so grateful that Karen (Maya’s nanny) was with us. Karen if you are reading this, thanks, you are more than family, and have held my back so many times.  You have seen me cry and smile, you have comforted me and sometimes with justa cup of coffee you have made my day.  Maya loves you, thanks for giving me peace of mind when you are with her.  I know that you are on top with her medicines, her eating and her drinking.  Thanks.

Luckily the rest of the week was good for Maya, and the anger episode was attributed to a reaction to the chemo drug.  Maya was monitored closely the rest of the week.

Maya was so excited to see her Godfather, Ian.  Ian was at the hospital when Maya was born.  Ian last saw Maya 3 years ago, before her diagnosis.  It was soo good to see you Ian.  We thank you so much for going out of your way to stop over in Toronto to see Maya.  We hope to see you more often, and Ian we trust you will get up on time to run the London Marathon :-).

Both Maya’s godparents Ian and my sis Jen (who was visiting for a few days from Vancouver) came to see Maya at the hospital this past week, Maya was delighted with their visit.   The family had two get togethers.  Not very often all the 4 sisters are in the same place.  Friday night the boys went out and the girls stayed home and we had a wonderful time.

I have been blessed to have a wonderful family.  My mom has been such a rock and has provided me with so much support this past year (yes it has been a year), likewise my sisters.  Jen, Carla and Horiana I love you, and I thank you for all your love towards me and above all your love for Maya.  Thanks for being there for me.  You have shown me again and again that you are just a phone call away.  And of course, a big thanks to my mother in law for all your love, i will never forget your words of encouragement last summer, when I needed them the most. and to Monica and her family for all their support.

It has been a tough week for me, yes a roller coaster of emotions.  On March 26th it was a year since our worlds changed so dramatically.  It has been a tough year with a lot of ups and downs.  Maya still has cancer, 50% of what she had last year is still there, we still have tough times ahead of us, but now, today, Maya is good and for that we are grateful, I am grateful.

In the next couple of weeks, Maya will go to the clinic a few times for blood work. Maya is scheduled to have what we hope and believe is the last round of chemo with these two drugs, and then she will have MIBG scans once again.  The hope is there, i cannot not have hope, and my hope is that one day we will celebrate Maya’s NED results.

Thanks everyone for your prayers, chants and support.

Indira