Wednesday, January 30, 2013

I spoke

Last night was a thank you dinner from Light The Night for all the top tier fundraisers. Amaey was the 2012 Memorial Honoree for San Mateo so they asked if I would like to come and say a few words.

I wasn't sure at all if I wanted to do it. But the recent events in life have made me question a lot of things about Amaey's treatment. I was talking about that with my sister and she said that I should talk about it and write about it if it is that important to me.
So I said yes, I accepted to talk at the event. I'm very grateful to Davina for being there with me. I'm not sure that I would have had the strength to stay through the entire program if I were by myself. I think I would have left...

My goal was to let people know the facts from a child's perspective and a parents view. I sensed the room getting darker and quieter as I started talking. I was shivering but I did not fall apart. I think Amaey was giving me the strength to tell his story.

This is what I feel and that is exactly what I said--

I have trained through TNT and done 3 half marathons. I have walked and participated in Light The Night, I have been nominated for the Woman of The year campaign through LLS and won, and during all those times I have come up to the podium and talked about hope and felt proud that my contribution, however insignificant, was going to help find a cure for my son who had ALL.

My son Amaey, was a man of science. He believed that science will cure him. He believed that he was going to kick cancer in the butt. He believed in everything his doctors made him go through. Amaey was diagnosed with ALL in 2005, when he was 3. He walked in the poking lab innumerable times, had countless blood transfusions, had many rounds of chemo, lost his hair, gained it all back, lost it again. He would get completely PMS on me when he was on steroids. He would be in and out of the hospital, had to miss school and playdates, and birthday parties. BUT, that was fine, because he believed in science and he was certain that this was but an inconvenience and it will all be in the past. 

In 2008, a month after his end of treatment, when we went in for a routine follow-up we found out that he had relapsed. This time we were told that it was because he is a boy. We see this kind of testicular relapse in boys. The cancer seems to find a hiding place in the testicles.

Fast forward to April 2011, a month before Amaey was to end his second round of treatment, we had to take him in to the hospital because he had a fever. Later that day my husband called me from the hospital to tell me that Amaey had relapsed, again, but this time it was with a chemo induced cancer called AML. A very aggressive kind of cancer and he might need a bone marrow transplant.

Being an ethnic child his chances of a match were negligent and yet Amaey found a 10-10 donor. In July 2011 Amaey underwent his bone marrow transplant and his hospital stay of 55 days in quarantine facility is what I want to talk about today. How do you lock a 9year old up in a room for 55 days? A hospital stay that started as a 30 day stay and kept extending until day 55 definitely did one thing to Amaey, he lost his faith in science. And worst still his spirit died. In those 55 days, he was undergoing intense radiation and was constantly hooked to medication and morphine.

A child that loved to talk, play with his brother and friends, a child who loved his piano so much that we got him a keyboard in his hospital room. That child lost his spirit. His spirit to live. It is all wonderful that we are raising funds to find the cure. But we all need to take a step back and look at the cost at which this cure is coming to these kids.

I don't think the doctors know what they are doing when it comes to the top tier critical cases. At that point it is a crap shoot. Let's tweak this medicine, oh that's messing with the kidney's OK let's add these 2 medicines, oh now the kidneys are fine but the liver is hit hard. All this tweaking and testing is happening on a live patient. A young body, a young living life. All the doctors are focused on is to treat that disease while they need to take a step back and look at the whole child. Look at the child's genetic make up. Look at what a 55 days stay in the hospital is doing to the child holistically and spiritually. You might end up removing the cancer from the child's body but are you hollowing them up and also wiping their spirit clean? Are you striking a balance?

When my son Amaey was diagnosed with ALL in 2005, A team of doctors sat us down to tell us what it meant. Looking at my stunned and worried look one of the doctors said, Mrs. Shah, let me tell you that if you were in the market to shop for cancer, this is the best kind you could buy. It has 85% survival rate. Your son is in good hands at this hospital.

Today in 2013, I do not have my son anymore. I'm standing here as a bereaved parent, a grieving mother.
In the year and 4 months since Amaey passed away, we have lost 3 other children. All undergoing bone marrow transplant. Their cancer was gone, technically their transplant was a success but they all died from an organ or internal system failure. These kids were ages 16, 9, and 12.

If all you, supporters,  that are raising funds are doing so to eradicate cancer, you need to make sure you ask for more. You need to make sure that you ask for your money to go towards a more holistic treatment that is based on genetic testing so that we don't end up telling another parent that they have shopped for the best kind of cancer and 6 years down the line they are making funeral arrangements.


Renata said...

I am so glad you went there and you "said it". I just cannot imagine what it is to live everyday with these thoughts inside you. I am grateful for the opportunity you were given, and that you took, to talk the hard talk so maybe other won't have to walk the mega hard walk. I hope you felt heard...

Purvi Shah said...

They were not expecting this speech. I was the last speaker of the evening. Only 2 people from the crowd came to say something to me after.
I think most of them were in a shock because they heard what they did not want to hear. The truth.

Did I feel better? No, it has left me feeling incomplete. I feel like I have to do more but I do not what.