Tuesday, October 11, 2011

Filling the gaps

What happened between Amaey's coming home and then suddenly leaving us all for his next journey? We never had a chance to talk about this with our family and friends. Things just transpired so fast that now that I look back I have to say that those were the longest two weeks of our lives, it felt like we were treading on quicksand and trying to stay afloat.

When they did his biopsy on the chest on Sept 7, they came back on the 9th with the results and they told us that his skin biopsy showed leukemic cells. His radiation doctor came to meet us right away and a plan was set to start skin radiation again 4 days a week for 3 weeks. We met with his entire BMT and ONC team and also decided to start him on a very low dose chemo.

His counts looked fine but we were really worried. It felt like deja vu, it felt like we were sitting in the meeting room 2 months ago with this same game plan pre-BMT. What happened? We are having this same conversation after 2 months of intense chemo, radiation, and a bone marrow transplant? The 2 months were a complete waste is that it?

We did not loose hope though, Amaey had beat this before, our family had worked through so much before, we knew we could beat this and move on. Everytime the chemo and hospitalization set him behind and we took him home and nurtured his soul and spirit and with good nutrition, exercise, a healthy dose of childhood happiness, and a lot of family love always brought him back to his normal happy and halthy self. We could beat this and move on. We truly believed that. We really did.

Over the weekend it was planned that they will let Amaey go home if he did not spike a fever, he had been warm for a few weeks now but the doctors really had no idea why and they started him on full spectrum antibiotics again. At this point the doctors understood that home was a better place than an apartment close to the hospital or the RM House. They were thinking of quality of life and home was where his life was.
On Monday, Sept 12 we got to come home and it was decided that Amaey would go home on antibiotics and TPN at night since he wasn't eating a lot. He still had low grade fever but we were really happy that we were going home, finally!

On Sept 13 was Arjun's b'day so it was very special that the house was full, Amaey was home which meant we were all under the same roof after a really long time. It was a lowkey b'day but it was very special. While Amaey was int he hospital he had sat down with me and ordered 2 special books for Arjun for his b'day. Luckily Arjun received them on the 13th, The Lego Ideabook and Lego Cool Cars book. Arjun was so genuinely happy, he said they were the best gifts he had received.

September 14, 15, 16 we would go back to the hospital everyday, do radiation, chemo and leave. It was so nice to drive home with Amaey in the backseat. However, I hated with all my heart and detested taking him to the hospital. I despised driving and completely hated putting him through the radiation again. I had to watch from outside while we made him change 3 poses and each pose took 5mins each. He so did not want to do it. He was promised that it was all over, he was told that once he goes for his BMT he will not need to go through any of this hopefully.

That weekend, we made the most of life. On Saturday 17th, Amaey and I had to go to the hospital for his chemo and Arjun had his b'day party. After Amaey and I came home we did our ritual nap... oh how I miss that.
Gabriel came over to spend time with his buddy. Amaey was so full of energy and so happy to see his friend. They played for a bit doing lots of different things and then they watched a movie and then suddenly Amaey was drained of energy and really tired.

Carmen had bought the boys brand new razors, these were high end scooters. So on Sunday 18th, we decided to take the scooters, helmets, and a picnic lunch and make a day out of it. We had to avoid a crowd so a park was not an option so we went to an office park, Apurva and Arjun scootered first and then Amaey and I scootered. It was such a thrill. He was so firm, and fast. I fumbled couple of times but he was standing tall on his scooter and riding like air. It was so beautiful. After we returned to our starting point we ate our sandwiches, and juice. Amaey was tired and did not say much but he was so happy. He had a lot to say about the noise Hotel Sofitel made, the noise polution it generated, the poop thanks to the geese. He liked sitting on the bench and looking at the man made lagoon. Did not like me taking photos and was bothered by his brother really bothering him. All normal stuff.

Monday 19th, Amaey had his normal BMT clinic appointment and he had to get couple of medicines so we were in the day hospital. On that day I told them that Amaey had been complaining of pain near his testicles. The doctors had no idea what it was. They called a urologist, and then had the ultrasound people come by. The ultrasound went on for a while, no idea what they were looking for, it felt weird to see them proding and poking all over him. After they left, the doctors stopped by and said that they are still waiting to hear back from the techs. Well, in half an hour the ultrasound team was back with the machine and a urologist and did the test again. By this time I should be freaking out but I just had this calm on me, bring it on... just bring it on, tell me what you want to say but give me a plan of how you plan to treat it.

When we finally left on that day we decided on a biopsy and his 60 day bone marrow test. They were supposed to look at the schedule and put us in for thursday. They did blood tests but I did not have the time to ask them the lab results with everything else going on.

Sept 20, Apurva took the day off and took Amaey for his appointments. They had radiation and chemo. I kept talking with Apurva and checking in to see if all was well. At 3:15pm as I was leaving to pick Arjun from school I get a call from Apurva, are you sitting, you should sit down and I start screaming hysterically. I start screaming, no one other then me is in the house, I have my shoes on and the keys in my hand, I'm getting late to pick arjun from school and the floor is slipping from underneath me. Apurva tells me that Amaey's WBC has doubled to 12000. 12000... that is not normal. He said the doctors can't do anything and they think the disease is spreading and he might just have weeks. WEEKS WTF!
I'm crying and in the car, I had to pick Arjun but as I get in the car I start freaking out, I'm crying unconsolably, I call Davina, she was working from home, and drive to her and I have no idea if I made any sense on the phone, all I remember telling her is, Amaey has weeks and I don't understand anything and I have to pick Arjun.

She is outside her house waiting by the curb by the time I get tot her house, she drives me to Arjun's school and then drops me off at the hospital. Arjun is a little surprised to see Davina driving my car, picking him up from school and droping me to the hospital. I could sense his anxiety. But I had to leave him in her safe hands and head to the hospital.

Apurva is in the consulting room with the doctors. They are having a conference with a doctor at St. Judes, nothing makes sense to me.  We are talking about DLI and NK cell transfer. After 15 minutes the meeting is done and we ask to be left alone. We both talk and then go and get Ammu from his day hospital room where he was sleeping. He had no idea what was going on. Nothing at all. He slept through it all. He was so happy when we told him we were ready to go home.

After we got home, Mrs G stopped by and worked with him for an hour, Amaey so wanted her to come, he said he had a lot of homework to catch-up and even though he had spent a whole day at the hospital, the thought of Mrs G was most refreshing. He looked tired and he was slow with the work but the two of them patiently kept going. It was so normal and so Ammu.

11 comments:

Renata. said...

Oh my. Thanks for sharing.

Anonymous said...

*sob*. hugs to you all. and much much strength and prayers. do post more videos of Amaey if you feel like sharing, to celebrate him.
-Jyotsna

Rina Sutaria said...

I have been following this blog for months. I do not personally know you or our angel Amaey but I feel like I do. I am so sorry for everything you have endured....but thank you for sharing. Hang in there...xoxoxoxoxo

Anonymous said...

How heart breaking..I cant even begin to imagine how you must have dealt with the news.
Many hugs to you and your family

Gayathri

Lisa Stone said...

Oh Purvi, you lived a nightmare. How horrific, and Apurva? I cannot speak or think out of sadness and anxiety for you all.

Please keep sharing if and when it feels right to you - I think it is so important, as we learned two years ago, it was our sanity to share the story, the shock, the pain.

xo Lisa

Smiling Mom said...

Dear Purvi
I cannot even imagine how you dealt with the news and how you are coping now.Amaey was an amazing child and you are blessed to be his mother.
hang in there and we are all praying that your family has the strength to cope with this loss.
Karuna

Anonymous said...

In this extremely sad story, one bright spot is - Amaey could not have found better parents than Purvi and Apurva. Your courage and patience for the past 6 years are true inspiration for anyone facing difficulties/challenges in life. Thanks for sharing.
--sunil

Lisa Stone said...

Beautifully said Sunil.

Anonymous said...

Purvi -

If you are in the south bay area sometime I would like to take you out for a cup of coffee and give you a big hug. What an incredibly sad yet strangely inspirational story. You must relive it by the minute to be able to write so beautifully and in such detail. I'm standing her rooting for amazing Amaey, wishing there was something I could do to change the outcome. I kept thinking - It's not fair, he is just a baby, why him! But you know, at the end of the day everyone dies. We save ourselves for a death in the future. Sounds cliched but to quote: "And in the end, it's not the years in your life that count. It's the life in your years." Amaey has lived such a full life and touched so many people that he has outlived many adults in the truest sense.
- Abby.

Anonymous said...

Hi Purvi,
I started following this blog after attending a marrow drive for Amaey in Foster City this past summer. My daughter drew a card for him and I silently prayed for a match and cheered for the rest of the family not knowing who you'll were. After reading this blog I feel I know you. While I do think Amaey is in a happy place and will forever be a happy 9 year old, I feel very sad for your loss. Your courage over the past years is inspiring. Prayers and hugs. And thanks for sharing your story.

- Shruti

Anonymous said...

Purvi, I am hurting for all of you. I cannot even understand the pain you, Apurva and Arjun are going through. And Amaey, the bravest kid.