After his nap, Amaey wanted to be up and ready for his brothers. Also, after almost 10 days he had bowel movements... Huge deal! I'm telling you it's like having a new baby.
When the boys came in you should have been here to see and feel the love. Hugs and hugs and more hugs. Amaey loves Arjun's soft hair, Arjun loves Amaey's baldy taklu. Since it was raksha bandhan and the boys had received a few rakhdi's Mona tied raked to Apurva, Arjun, Amaey, and I tied it to Akhil. The boys played some Lego universe and as I was settling Amaey in his bed I could see him shivering. The shivering got worst so the family left. Amaey was feeling sick and you could see it. Even though everyone had showered and were wearing masks we were still worried about infections. They left right away. Amaey's shivering got worst. After a while when the nurse came to do his vitals he showed signs of a fever. He had to take one of his oral meds and he threw up. Oh god what is happening. I kept telling myself, let this be good. Let this mean only one thing that his WBC is actually coming in. Please let there be some gain from this pain.
We started watching knight rider but Amaey was feeling too tired so we turned in for the night. Amaey was really restless so the nurse got him a warm pack. From 9:30 to 11 he kept tossing and turning, he wanted to sleep but couldn't. So I sang, Gujarati lullabies, nursery rhymes, gayatri mantra... Everything that I could. Finally at 11:30 he was fast asleep. I couldn't wait for the morning 6am blood draw so that I could get the results. Finally i did and his WBC was .3 oh yes! Small move up but we haven't seen that number in a month... Hopefully it will keep going up.
Sunday, August 14, 2011
Saturday, August 13, 2011
Day 18
This morning I came early because Apurva had to drive to Olema to pick up the rest of the family. Today the kids do a performance for the parents. Something they work on over the week. Arjun's camp director called to let us know that Arjun has been playing his tabla and charming everyone. They have an event at the India Community Center on Sunday and they wanted Arjun to come and play tabla for the show. We are so happy that he has been having a good time. He so deserves it.
When the doctors did their rounds after apurva left, we had one worrying question... Where is the WBC? It should have started showing up. But the doctors said we just have to be patient. It takes 21-28 days sometimes. They were hoping to start seeing some upward movement too by the weekend but they think that since his mucositis is completely healed the WBC might have gotten used for that. No explanation makes sense, just wait and watch seems the right thing to do. Each body is different and we are praying and hoping that slow and steady will win the race. He is otherwise looking good and for me, that is good enough at the moment. I will take that over all the fevers and pains he has just been through.
When the doctors did their rounds after apurva left, we had one worrying question... Where is the WBC? It should have started showing up. But the doctors said we just have to be patient. It takes 21-28 days sometimes. They were hoping to start seeing some upward movement too by the weekend but they think that since his mucositis is completely healed the WBC might have gotten used for that. No explanation makes sense, just wait and watch seems the right thing to do. Each body is different and we are praying and hoping that slow and steady will win the race. He is otherwise looking good and for me, that is good enough at the moment. I will take that over all the fevers and pains he has just been through.
Day 17
Morning was slow, really slow. After his usual shower he was really blah. His nose was bleeding because of low platelet count, he was bored, did not feel like doing a thing and missed Arjun... And then he started crying a bit. Apurva showed up just as all this was taking place. We tried to cheer him up but did not work. He went back to bed and watched a scooby doo show Apurva had just downloaded on iTunes.
In the afternoon I had some good R&R. Ate lunch, went for my haircut, went to TJ's and did groceries, cleaned the house, and left for the hospital, wow that felt like a normal day! Between Swati, Vicky, and Mona, I haven't done groceries in the last few weeks. Maybe run in for emergencies but a whole hour of walking around the store, looking at labels, smelling fresh flowers.... that was really nice. Hmmm, how can a mundane thing like grocery shopping feel so good?
When I went to the hospital, the boys were in for a real shock, I had been talking about cutting my hair real short, pre kids time. But wasn't sure if I was going to do it. I told Apurva I will see how I feel when I sit on that chair. Apurva was all for it... In fact he was like, just go do it... Do what makes you happy and even if the high lasts for 2hrs, do it. So when I walk in the room, Apurva loved it, Amaey on the other end.... would not acknowledge it, it was too different for him. BUT, he was smiling, sitting up by the big window and reading. What a huge shift from the morning. As soon as he completed his book we played UNO. Amaey won 2 games, I came second in 2, Apurva lost in 2 and then came the fun...Amaey and Apurva played swords and soldiers on PS3 and Apurva lost both times... We gave him such a hard time. Amaey being Amaey said, Pa... You need to go for a walk and redeem yourself. Ha, ha.
I left after Apurva came back from his walk. It was so nice to see Amaey happy. I don't know how he does it but I have told him that only he can make it happen, we can't make him change his mood or attitude unless he wants it changed. He is one tough cookie.
At night I got a text that Arjun had called and Amaey was tucked in bed with a big smile on his face.
In the afternoon I had some good R&R. Ate lunch, went for my haircut, went to TJ's and did groceries, cleaned the house, and left for the hospital, wow that felt like a normal day! Between Swati, Vicky, and Mona, I haven't done groceries in the last few weeks. Maybe run in for emergencies but a whole hour of walking around the store, looking at labels, smelling fresh flowers.... that was really nice. Hmmm, how can a mundane thing like grocery shopping feel so good?
When I went to the hospital, the boys were in for a real shock, I had been talking about cutting my hair real short, pre kids time. But wasn't sure if I was going to do it. I told Apurva I will see how I feel when I sit on that chair. Apurva was all for it... In fact he was like, just go do it... Do what makes you happy and even if the high lasts for 2hrs, do it. So when I walk in the room, Apurva loved it, Amaey on the other end.... would not acknowledge it, it was too different for him. BUT, he was smiling, sitting up by the big window and reading. What a huge shift from the morning. As soon as he completed his book we played UNO. Amaey won 2 games, I came second in 2, Apurva lost in 2 and then came the fun...Amaey and Apurva played swords and soldiers on PS3 and Apurva lost both times... We gave him such a hard time. Amaey being Amaey said, Pa... You need to go for a walk and redeem yourself. Ha, ha.
I left after Apurva came back from his walk. It was so nice to see Amaey happy. I don't know how he does it but I have told him that only he can make it happen, we can't make him change his mood or attitude unless he wants it changed. He is one tough cookie.
At night I got a text that Arjun had called and Amaey was tucked in bed with a big smile on his face.
Day 15-16
The occupational therapist and physical therapists stoped by. One day they spent time playing darts and another day they played golf. They used cups and bowls as holes and hazards.
On day 16 he was really really low. I think he is getting bored now and with Arjun not around that's amplified. I was with him the whole day but could not get him to do anything. He also started complaining of headache and hip pain. The doctors explained that that was because of new marrow coming in. Which sounds wonderful but scary because his WBC is still 0.1.
Mona did not come with me because she had to pack for her camping trip to Olema. She was driving with a family to Gandhi camp to attend their picnic.
In the evening when Apurva and she came over she tried to get Amaey out of his funk but it did not work. Apurva and I did go for a long walk and that was nice.
On day 16 he was really really low. I think he is getting bored now and with Arjun not around that's amplified. I was with him the whole day but could not get him to do anything. He also started complaining of headache and hip pain. The doctors explained that that was because of new marrow coming in. Which sounds wonderful but scary because his WBC is still 0.1.
Mona did not come with me because she had to pack for her camping trip to Olema. She was driving with a family to Gandhi camp to attend their picnic.
In the evening when Apurva and she came over she tried to get Amaey out of his funk but it did not work. Apurva and I did go for a long walk and that was nice.
Friday, August 12, 2011
Arjun
Arjun is away at camp and Amaey is really missing him now.
Previously, while we were planning Amaey's transplant stay we had decided that Arjun would not come to the hospital in the first 2weeks... What were we thinking? That visit after his nap time is Amaey's drug. He looks forward to the wild and unexpected. I'm so glad that we got to our senses and saw what Amaey needed most and involved Arjun throughout the process.
Arjun has been calling the hospital at night to say hi to Amaey, and it brings a big warm smile in Amaey's heart. Last night he called and apologized for not being able to call the last two days. He asked Amaey about the new Lego universe download and Amaey just could not be stopped, he wanted to give all the details to Arjun but it was really noisy on Arjun's side so he asked to have a longer conversation on his return.
After 2 mins of his call I got a call from his camp and the person who is in charge asked me if Amaey was feeling much better? He said Arjun was so happy after talking with his brother, he said his brother sounded so much better, he sounded so himself again... I never know what these little minds are capable of thinking, what they keep inside them, and how little moments shape them. Apurva and I are passive onlookers to this special relationship. We cannot partake in their goings about be we can revel in their happiness.
Previously, while we were planning Amaey's transplant stay we had decided that Arjun would not come to the hospital in the first 2weeks... What were we thinking? That visit after his nap time is Amaey's drug. He looks forward to the wild and unexpected. I'm so glad that we got to our senses and saw what Amaey needed most and involved Arjun throughout the process.
Arjun has been calling the hospital at night to say hi to Amaey, and it brings a big warm smile in Amaey's heart. Last night he called and apologized for not being able to call the last two days. He asked Amaey about the new Lego universe download and Amaey just could not be stopped, he wanted to give all the details to Arjun but it was really noisy on Arjun's side so he asked to have a longer conversation on his return.
After 2 mins of his call I got a call from his camp and the person who is in charge asked me if Amaey was feeling much better? He said Arjun was so happy after talking with his brother, he said his brother sounded so much better, he sounded so himself again... I never know what these little minds are capable of thinking, what they keep inside them, and how little moments shape them. Apurva and I are passive onlookers to this special relationship. We cannot partake in their goings about be we can revel in their happiness.
Thursday, August 11, 2011
Some photos
When we celebrated Amaey's b'day on July 16 before his transplant, I had a nervousness in me. I had to capture every moment of his life.
At the last minute I called our dear friend and filmmaker Sunil. Without any hesitation he and Renu stopped by to document that beautiful day. Here are some amazing photos from the directors eye (there were so many more but I couldn't upload all).
At the last minute I called our dear friend and filmmaker Sunil. Without any hesitation he and Renu stopped by to document that beautiful day. Here are some amazing photos from the directors eye (there were so many more but I couldn't upload all).
Thank you Sunil and Renu!!!
Wednesday, August 10, 2011
Book
I just finished reading a wonderful book, The School of Essential Ingredients http://www.amazon.com/gp/product/B003UHUBLI/ref=pd_lpo_k2_dp_sr_1?pf_rd_p=486539851&pf_rd_s=lpo-top-stripe-1&pf_rd_t=201&pf_rd_i=0399155430&pf_rd_m=ATVPDKIKX0DER&pf_rd_r=0APR3NE8GZG2BFQ7RARD
Your experience with the book and it's characters will be based on the kind of baggage you are walking around with. Absolutely worth reading it.
Your experience with the book and it's characters will be based on the kind of baggage you are walking around with. Absolutely worth reading it.
Day 12-14
Amaey had a good day, slow and sleepy day, and busy day. They are watching all his numbers very carefully. They have to fine tune and try a different combination each day. They need to watch his kidneys and liver. His hemoglobin has stabilized since the last episode so that is one less thing to worry about at the moment.
But best of all... He said he was hungry yesterday and that was music to our ears. I gave him a bite of rice cake and he could swallow it but it felt bitter. He asked for cereal and he ate it with a big smile on his face. Apurva walked in as Amaey was eating and you should have seen the surprise on his face. We were jubilant like new parents watching their infant take his first bite.
Mona has been coming to the hospital with me on my days here and we played darts, UNO, rumikub and that has been a good distraction. But last night he was counting down to when Arjun returns.
It's been 2 weeks since his transplant and 3 weeks since we have been in the hospital. Days are blending in and we forget what happened the previous day because each day holds it's own challenge. We feel like gamblers in Vegas betting on a high roller game. The odds different with each strategy.
But best of all... He said he was hungry yesterday and that was music to our ears. I gave him a bite of rice cake and he could swallow it but it felt bitter. He asked for cereal and he ate it with a big smile on his face. Apurva walked in as Amaey was eating and you should have seen the surprise on his face. We were jubilant like new parents watching their infant take his first bite.
Mona has been coming to the hospital with me on my days here and we played darts, UNO, rumikub and that has been a good distraction. But last night he was counting down to when Arjun returns.
It's been 2 weeks since his transplant and 3 weeks since we have been in the hospital. Days are blending in and we forget what happened the previous day because each day holds it's own challenge. We feel like gamblers in Vegas betting on a high roller game. The odds different with each strategy.
Saturday, August 06, 2011
Day 11
Easy night but lazy morning... which is how a saturday should be.
Amaey's electrolytes are all whaky as they put it so they will be ine tuning all his meds and watching him very closely. His bilirubin is high and they don't like that but it is also caused by all the medications and electrolytes he is on. He also got a blood transfusion and that is a culprit too. Until day 21 his condition is considered critical. Until engraftment takes place and he starts making some counts.
The two blood types are constantly fighting inside his body too so with each blood transfusion they are hoping that the change will happen and then they won't have to worry about it. Right now he still gets his O+.
As one of our friends mom who is an oncologist in France put it, each day away from his transplant day brings him a step closer to a cure. It's a slow road to recovery and painful to watch him at times but it is hope nevertheless.
Amaey's electrolytes are all whaky as they put it so they will be ine tuning all his meds and watching him very closely. His bilirubin is high and they don't like that but it is also caused by all the medications and electrolytes he is on. He also got a blood transfusion and that is a culprit too. Until day 21 his condition is considered critical. Until engraftment takes place and he starts making some counts.
The two blood types are constantly fighting inside his body too so with each blood transfusion they are hoping that the change will happen and then they won't have to worry about it. Right now he still gets his O+.
As one of our friends mom who is an oncologist in France put it, each day away from his transplant day brings him a step closer to a cure. It's a slow road to recovery and painful to watch him at times but it is hope nevertheless.
Friday, August 05, 2011
Day 10
As I walked to his room I saw the doctors coming out with a big smile on thier faces. They said, he was awake and cheerful and they were happy to see that.
He was a little slow though maybe from all the excitement from his b'day. After his shower he just wanted to go back to bed. His occupational therapist and physical therapist stopped by by neither could get him out of bed. He wanted to read his new book. He got 8 books and he can't wait to read them all.
In the afternoon the massage therapist stopped by and Amaey enjoyed that. He needed platelets so they had to give him benadrly, that slowed him a bit. He slept but was very groggy. I set-up his new dart board and once we figured the electronic scoring and all, we had a great time with it. When the boys stopped by later, they played lots of games. The room was bustling with excitement.
Arjun and Akhil leave for Gandhi camp tomorrow, they are gone for 8 days. So there was a lot of hugging and silliness as they were leaving. We will have to find ways to entertain Amaey in the evening and fill his brother and cousins shoes.
He was a little slow though maybe from all the excitement from his b'day. After his shower he just wanted to go back to bed. His occupational therapist and physical therapist stopped by by neither could get him out of bed. He wanted to read his new book. He got 8 books and he can't wait to read them all.
In the afternoon the massage therapist stopped by and Amaey enjoyed that. He needed platelets so they had to give him benadrly, that slowed him a bit. He slept but was very groggy. I set-up his new dart board and once we figured the electronic scoring and all, we had a great time with it. When the boys stopped by later, they played lots of games. The room was bustling with excitement.
Arjun and Akhil leave for Gandhi camp tomorrow, they are gone for 8 days. So there was a lot of hugging and silliness as they were leaving. We will have to find ways to entertain Amaey in the evening and fill his brother and cousins shoes.
Thursday, August 04, 2011
Day 9 on his 9th b'day!
Happy 9th Birthday Amaey!!
He is not up yet but when he woke up to get his vitals done he told me that his mouth did not hurt as much. It was still hard to swallow. He had a good night, no fevers, no pain pump at all.
We hope for a happy day filled with smiles and hopefully a sip of water.
Yes, it did turn out to be a wonderful day. He received lots of cards, phone messages, emails, texts and facetime birthday wishes. And drumroll..... 3 sips of water!
In the evening we came with gifts, cupcakes and cookies for the nurses and the boys decided to be British and have a tea party. Amaey had some tea too. It was beautiful to see him sit and sip tea and chat and smile. He wanted some of the stuffed animals from home so we brought along, freshly laundered, big dog, spotty and sir hoppy bun bunz joined in too.
The doctors came in singing at their rounds and the nurses came in in the evening and sang to him as well, that's when he got completely overwhelmed.
It was a beautiful day. His last single digit birthday, how special is that.
He is not up yet but when he woke up to get his vitals done he told me that his mouth did not hurt as much. It was still hard to swallow. He had a good night, no fevers, no pain pump at all.
We hope for a happy day filled with smiles and hopefully a sip of water.
Yes, it did turn out to be a wonderful day. He received lots of cards, phone messages, emails, texts and facetime birthday wishes. And drumroll..... 3 sips of water!
In the evening we came with gifts, cupcakes and cookies for the nurses and the boys decided to be British and have a tea party. Amaey had some tea too. It was beautiful to see him sit and sip tea and chat and smile. He wanted some of the stuffed animals from home so we brought along, freshly laundered, big dog, spotty and sir hoppy bun bunz joined in too.
The doctors came in singing at their rounds and the nurses came in in the evening and sang to him as well, that's when he got completely overwhelmed.
It was a beautiful day. His last single digit birthday, how special is that.
Wednesday, August 03, 2011
Day 8
Today was a different day. No fever overnight. After his shower he wanted to sit by the window. Can't drink anything yet but he did not need to use his pain pump much.
We started decorating his room. He was really excited about that. While he sat and played on the iPad, I put up little stuff here and there. He looked at it with a big smile. He could smile today and he wanted to talk. He called up his buddy and talked, though it was hard for him he wanted to keep going. The art therapist showed up with a project and Amaey happily worked on that. They had to read a book and then create the island from their imagination.
Just as he was getting ready for a nap after she left, we saw the occupatinal therapist coming into the room. I thought Amaey was going to shoo her off but he got out of bed and inspected the loot she had brought along. The ball she had was a bit heavy for him but the badminton seemed a lot of fun. Badminton in the room? She goes Yeah... big smiles.
Then he showed her his new nerf vortex and they did some target practise and then he was done. Happily done.
It was beautiful to see him smile and chat, two things he loves to do.
Arjun came with Apurva and then I went for a long walk around Stanford. When I came back the boys were in the midst of a PS3 battle.
Each day is so different. The way we look at it, each day that passes will bring his body closer to healing.
We started decorating his room. He was really excited about that. While he sat and played on the iPad, I put up little stuff here and there. He looked at it with a big smile. He could smile today and he wanted to talk. He called up his buddy and talked, though it was hard for him he wanted to keep going. The art therapist showed up with a project and Amaey happily worked on that. They had to read a book and then create the island from their imagination.
Just as he was getting ready for a nap after she left, we saw the occupatinal therapist coming into the room. I thought Amaey was going to shoo her off but he got out of bed and inspected the loot she had brought along. The ball she had was a bit heavy for him but the badminton seemed a lot of fun. Badminton in the room? She goes Yeah... big smiles.
Then he showed her his new nerf vortex and they did some target practise and then he was done. Happily done.
It was beautiful to see him smile and chat, two things he loves to do.
Arjun came with Apurva and then I went for a long walk around Stanford. When I came back the boys were in the midst of a PS3 battle.
Each day is so different. The way we look at it, each day that passes will bring his body closer to healing.
Tuesday, August 02, 2011
Day 7
Hard, hard, hard days, swallowing was particularly hard and his fevers kept going up. He stopped drinking completely and slept most of the day because of pain and fever. He needed blood and platelets and that always causes fevers for him too. Yesterday he could not speak either. His mouh was swollen and you could see pain on his face.
The only question he asked was when he would be able to drink water again. That's all he wants, a sip of water and he wants to enjoy it.
Arjun came on one of these days and Amaey was out of it, we had to leave in an hour and Arjun was really sad. He has taken the role of the jester, the entertainer and he always manages to make Amaey happy and I think he felt bad that he cold not make Amaey happy.
Well what goes up has to come down, we should see some change soon.
The only question he asked was when he would be able to drink water again. That's all he wants, a sip of water and he wants to enjoy it.
Arjun came on one of these days and Amaey was out of it, we had to leave in an hour and Arjun was really sad. He has taken the role of the jester, the entertainer and he always manages to make Amaey happy and I think he felt bad that he cold not make Amaey happy.
Well what goes up has to come down, we should see some change soon.
Monday, August 01, 2011
Day 6
A nice long bath is Amaey's favorite thing in the morning. So today when I came in he was in pain and looked like he had a low grade fever but the minute I mentioned a warm bath he was ready to wake up and start his day.
After his bath we sat by the big window and he sipped some tea but it was particularly hard today. The nurse came ot do his vitals and he had a fever. He stayed on the sofa and played on his computer for a bit and right now a massage therapist is massaging him. Amaey does not like massages.... seriously he does not like them. so to convince him to move to his bed took work. He gave her a hard time when she wanted to get started but I knew that if she was good she would win him over. And I think she is good because he has let her keep going. But he is too funny, he won't let her touch his head, no creme, no back. But she is so calm and gently working her way. I think he will take a nice long nap.
After his bath we sat by the big window and he sipped some tea but it was particularly hard today. The nurse came ot do his vitals and he had a fever. He stayed on the sofa and played on his computer for a bit and right now a massage therapist is massaging him. Amaey does not like massages.... seriously he does not like them. so to convince him to move to his bed took work. He gave her a hard time when she wanted to get started but I knew that if she was good she would win him over. And I think she is good because he has let her keep going. But he is too funny, he won't let her touch his head, no creme, no back. But she is so calm and gently working her way. I think he will take a nice long nap.
Day 4 and 5
Amaey spiked a fever on Day 4 and they had to start him on antibiotics and do cultures. Luckily after tylenol he felt better and did sleep through the night. The next day he was fever free. His mucositis is more inflamed so they had to up his pain medication dose.
He has stopped eating completely. The only thing he can do is drink some tea. He sips on tea throughout the day. However it is getting hard from him to sip.
Swati went back to Detroit and the boys were really sad, they wanted her to stay longer. Akhil stopped by and played Doodle Dice with Amaey and really enjoyed the game. Yesterday Arjun came in with a surprise for him. It was a Nerf Vortex blaster. Amaey was in pain, mouth hurt, could not speak but as soon as Arjun opened his surprise we could get him to sit up and interact. He had so much fun with Arjun and the toy, they did target pratice with cups and had a blast.
Apurva stayed over and said that Amaey did not get a fever and he slept well but was in a lot of pain.
He has stopped eating completely. The only thing he can do is drink some tea. He sips on tea throughout the day. However it is getting hard from him to sip.
Swati went back to Detroit and the boys were really sad, they wanted her to stay longer. Akhil stopped by and played Doodle Dice with Amaey and really enjoyed the game. Yesterday Arjun came in with a surprise for him. It was a Nerf Vortex blaster. Amaey was in pain, mouth hurt, could not speak but as soon as Arjun opened his surprise we could get him to sit up and interact. He had so much fun with Arjun and the toy, they did target pratice with cups and had a blast.
Apurva stayed over and said that Amaey did not get a fever and he slept well but was in a lot of pain.
Saturday, July 30, 2011
Day 4
Lot more pain today. It's hard for him at night and they had to increase his pain meds dose.
This morning when I came in he was quite blah. A shower helped. However they needed to change his dressing and he does not like that. They also benadryled him for Platelet transfusion so he was out of it. After all that activity he fell asleep so that might help him.
Apurva had a brilliant idea of putting up 1 crane for each day post transplant, by day 100 our room is going to look beautiful.
Arjun has company at home now with my sister Mona her son Akhil and apurva's sister Swati. They went to see cowboy v/s aliens last night and today he has an event at his music school. Someone usually brings him here in the evening but today Amaey did not want anyone to stop by because he finds Arjun too energetic at the moment.
This morning when I came in he was quite blah. A shower helped. However they needed to change his dressing and he does not like that. They also benadryled him for Platelet transfusion so he was out of it. After all that activity he fell asleep so that might help him.
Apurva had a brilliant idea of putting up 1 crane for each day post transplant, by day 100 our room is going to look beautiful.
Arjun has company at home now with my sister Mona her son Akhil and apurva's sister Swati. They went to see cowboy v/s aliens last night and today he has an event at his music school. Someone usually brings him here in the evening but today Amaey did not want anyone to stop by because he finds Arjun too energetic at the moment.
Friday, July 29, 2011
Day 3
Over the last 3 days Amaey is holding up well. He is developing mucositis which is something they had warned us about. Mucositis lines the gastrointestinal area so from his mouth, tongue, throat, the food pipe, and the intestines, all get flared up and it makes it very uncomfortable to swallow.
They give the patients a buzzer to manage their own pain. They can press the buzzer and a small dose of pain medicine is released. Right now he is only using it before eating. However, last night he needed it at 4am because his mouth and legs were hurting.
Otherwise, he is in good spirits and enjoying his new toy... slr camera. He has been trigger happy and shooting everyone that walks through the door and everything in his room. I think he will become a good photographer by the time he is out of here.
They give the patients a buzzer to manage their own pain. They can press the buzzer and a small dose of pain medicine is released. Right now he is only using it before eating. However, last night he needed it at 4am because his mouth and legs were hurting.
Otherwise, he is in good spirits and enjoying his new toy... slr camera. He has been trigger happy and shooting everyone that walks through the door and everything in his room. I think he will become a good photographer by the time he is out of here.
Tuesday, July 26, 2011
Day 0
Amaey had his transplant at 11:30am!!
Apurva and I were in the room along with 2 doctors and 3 nurses.
They drained down every bit of the stem cells. As soon as the stem cells were draining out of the bag the room got really quiet and suddenly Amaey started clapping as he saw the last drop emptying out of the tube and heading towards him and then disappearing inside him. That was a really good ice breaker. The whole room started applauding. In a few minutes though he started getting a headache and then the headache became more painful and his blood pressure went up. The blood pressure kept rising and all of a sudden he was in excruciating pain and started screaming. We tried cold and hot compress, pressing his head, singing to him, chanting in peace but his pain was very high, they got him morphine, still no effect, they got him hi-blood pressure medicine and he threw up. After what seemed like an eternity but lasted 30 mins, and more morphine later, he slowed down and rested.
Swati and Arjun were here and Amaey hugged and kissed Arjun when he was feeling better.
Since 3pm he is doing fine, sitting up and sipping some lemon Ginger tea.
Our O positive child will slowly B positive because the donor is B+ blood type.
Thank you donor for your generosity! We are truly indebted to you young man, whoever you are and wherever you are.
As Amaey and Arjun's Yoda would say, beginning this is just, my young Jedi!
Apurva and I were in the room along with 2 doctors and 3 nurses.
They drained down every bit of the stem cells. As soon as the stem cells were draining out of the bag the room got really quiet and suddenly Amaey started clapping as he saw the last drop emptying out of the tube and heading towards him and then disappearing inside him. That was a really good ice breaker. The whole room started applauding. In a few minutes though he started getting a headache and then the headache became more painful and his blood pressure went up. The blood pressure kept rising and all of a sudden he was in excruciating pain and started screaming. We tried cold and hot compress, pressing his head, singing to him, chanting in peace but his pain was very high, they got him morphine, still no effect, they got him hi-blood pressure medicine and he threw up. After what seemed like an eternity but lasted 30 mins, and more morphine later, he slowed down and rested.
Swati and Arjun were here and Amaey hugged and kissed Arjun when he was feeling better.
Since 3pm he is doing fine, sitting up and sipping some lemon Ginger tea.
Our O positive child will slowly B positive because the donor is B+ blood type.
Thank you donor for your generosity! We are truly indebted to you young man, whoever you are and wherever you are.
As Amaey and Arjun's Yoda would say, beginning this is just, my young Jedi!
Monday, July 25, 2011
Day-1
Today was rest day.
No chemo, radiation, nothing.
Amaey made the most of it. At 11 when the doctors came for their rounds he played his piano for them. Later his 2 nurses got a performance too. Arjun and Swati came in the evening and he built his Lego heroes, played playstation, and had fun.
He wanted food from Daphne's so we got all him that. Apurva said he enjoyed the day and was content.
No chemo, radiation, nothing.
Amaey made the most of it. At 11 when the doctors came for their rounds he played his piano for them. Later his 2 nurses got a performance too. Arjun and Swati came in the evening and he built his Lego heroes, played playstation, and had fun.
He wanted food from Daphne's so we got all him that. Apurva said he enjoyed the day and was content.
What is BMT
Bone Marrow transplant day is the most anti-climatic day, so say the doctors and nurses.
The donor marrow has already been harvested and ready to go. On the 26th he will get the marrow through an ivy just like a blood transfusion. It usually lasts 2+ hours based on the body weight.
A lot of activity will go on with doctors and nurses coming in and monitoring him. Everyone will have to start wearing a gown and mask and cover their shoes with booties before entering his room.
At this moment we feel like we are at the edge of the cliff and are about to fall off into the abyss. When you are doing your 2 min scrub before entering the stem cell unit you tend to meet parents from the unit and get some good advice too. From everything we hear it seems like we are in for a hell of a rollercoaster ride.
Amaey told me tonight that he is nervous and anxious about his transplant. He said the word transplant is very strange. I asked him to tell me more but he just said that it makes him nervous that's all. He is counting days to his transplant. I wonder what else is going in his head. Wonder what he is thinking.
The donor marrow has already been harvested and ready to go. On the 26th he will get the marrow through an ivy just like a blood transfusion. It usually lasts 2+ hours based on the body weight.
A lot of activity will go on with doctors and nurses coming in and monitoring him. Everyone will have to start wearing a gown and mask and cover their shoes with booties before entering his room.
At this moment we feel like we are at the edge of the cliff and are about to fall off into the abyss. When you are doing your 2 min scrub before entering the stem cell unit you tend to meet parents from the unit and get some good advice too. From everything we hear it seems like we are in for a hell of a rollercoaster ride.
Amaey told me tonight that he is nervous and anxious about his transplant. He said the word transplant is very strange. I asked him to tell me more but he just said that it makes him nervous that's all. He is counting days to his transplant. I wonder what else is going in his head. Wonder what he is thinking.
Sunday, July 24, 2011
Day -3 and 2
Amaey got hi-dose chemo for these two days and a lot of hydration to go with it. He seemed to have tolerated it fine. Lot more nausea and tiredness but he managed to play on his keyboard and read, and see some friends.
His appetite is low and we are trying hard to make him what he desires. He will go on a very strict food regiment after transplant so we are trying to get him food from all his favorite restaurants.
With all the metal taste in his mouth he is not really finding anything appetizing but he is trying.
He is sleeping now and had a big smile on his face when he said goodnight.
His appetite is low and we are trying hard to make him what he desires. He will go on a very strict food regiment after transplant so we are trying to get him food from all his favorite restaurants.
With all the metal taste in his mouth he is not really finding anything appetizing but he is trying.
He is sleeping now and had a big smile on his face when he said goodnight.
Some photos
The boys
Photo of the radiation booth from the monitoring room.
Zen Amaey ready to take off in his radiation harness.
Amaey drawing with a volunteer in is room.
Friday, July 22, 2011
Saturday July 16
Amaey's b'day is as such on august 4th but we had a feeling that he might be in the hospital around that time. Since 18th was the deciding day we decided to celebrate his b'day on the 16th.
All he wanted was a BBQ by Apurva, his two buddies- Gabriel and Christopher (we couldn't have invited more kids because of the upcoming hospital stay), a strawberry cake from whole foods and decorations with balloons.
I really wanted artist Morris to work with the boys as a memory of that day. Davina and Maureen handled everything because it was a very last minute party. I decided at 11pm on Friday once Amaey was home from the hospital and safely in bed. I knew he would be home with us the next day.
Morris Came up with an amazing project, 4 puzzle pieces that each kid could create in their own way and then it could all be put together as one. How ingenious is that.
It was really wonderful to see Amaey happy and enjoying himself.
On Sunday we had artist Neta over, she brought a big canvas for the 4 of us as a family to work on. We all painted our own colors to fill up the canvas and then we colored our own images and did some collage. It looked beautiful. Neta is an amazing artist, she is so calm, so artistic, had a lot of positive energy. The two hours we spent as a family creating our masterpiece was super special.
We still have all the decorations up in the house, Arjun won't let us take them down, he says it reminds him of Amaey.
All he wanted was a BBQ by Apurva, his two buddies- Gabriel and Christopher (we couldn't have invited more kids because of the upcoming hospital stay), a strawberry cake from whole foods and decorations with balloons.
I really wanted artist Morris to work with the boys as a memory of that day. Davina and Maureen handled everything because it was a very last minute party. I decided at 11pm on Friday once Amaey was home from the hospital and safely in bed. I knew he would be home with us the next day.
Morris Came up with an amazing project, 4 puzzle pieces that each kid could create in their own way and then it could all be put together as one. How ingenious is that.
It was really wonderful to see Amaey happy and enjoying himself.
On Sunday we had artist Neta over, she brought a big canvas for the 4 of us as a family to work on. We all painted our own colors to fill up the canvas and then we colored our own images and did some collage. It looked beautiful. Neta is an amazing artist, she is so calm, so artistic, had a lot of positive energy. The two hours we spent as a family creating our masterpiece was super special.
We still have all the decorations up in the house, Arjun won't let us take them down, he says it reminds him of Amaey.
Day -4
This morning was a hustle, amaey wanted butternut squash soup for lunch and informed me about that at 10pm. I was quite tired so i did not feel like going grocery shopping. Hit trader joes at 9am and whipped up the soup while Swati took his breakfast, dropped arjun to planet granite and drove to the hospital.
Last day of radiation (xrt). Apurva took him at 7:30am and I made it here in time for the finale at 11:30. Rudolfo, the xrt tech had another rap ready for Amaey. Once Amaey changed into his gown, put on the harness, stood in the xrt booth, and they placed his lung protector plates, we all left the room.
There is a tv screen where we can see him and a two way transmitter for communication. Rudolfo started his rap and it was so good that he had to do it again. 3 mins were left and then I just chatted with Amaey and we counted down the last 22 seconds.
There is construction at the hospital so we have to wheel him via the courtyard and he really wanted to spend a few minutes outside. So we cheated and stayed out for a bit.
Back in the room he had a sponge bath, ate his lunch and finished reading his last Fablehaven book. He was planning to nap when a volunteer stopped by. Amaey and she did some art, playdoh, and piano. He was so happy and tired when she left. He is napping and has planned to do some spin art when he wakes up.
Amaey woke up a bit sad, he kept asking for Arjun, when is he coming, why is he not hear. I tried to do some sand art with him but he wasn't into it. He is on dexamethasone so he was really hungry and moody. He tried to watch a movie, switched to tv show, back to movie, and then he went and cuddled his bunny in bed. He was just blah.
I was really proud of him though because he tried to get out of his funk and asked me to do some work on the NASA site. When Brian Day from NASA had stopped by he had told Amaey about moonzoo.org and galaxyzoo.org, here you can be a citizen scientist, he worked on that a bit and then luckily Arjun was here.... Then I was no longer needed.
Both the boys are playing a new game on the PS3 and after dinner, Arjun gets to go back with Swati and watch captain America. Apurva is taking a break today.
Last day of radiation (xrt). Apurva took him at 7:30am and I made it here in time for the finale at 11:30. Rudolfo, the xrt tech had another rap ready for Amaey. Once Amaey changed into his gown, put on the harness, stood in the xrt booth, and they placed his lung protector plates, we all left the room.
There is a tv screen where we can see him and a two way transmitter for communication. Rudolfo started his rap and it was so good that he had to do it again. 3 mins were left and then I just chatted with Amaey and we counted down the last 22 seconds.
There is construction at the hospital so we have to wheel him via the courtyard and he really wanted to spend a few minutes outside. So we cheated and stayed out for a bit.
Back in the room he had a sponge bath, ate his lunch and finished reading his last Fablehaven book. He was planning to nap when a volunteer stopped by. Amaey and she did some art, playdoh, and piano. He was so happy and tired when she left. He is napping and has planned to do some spin art when he wakes up.
Amaey woke up a bit sad, he kept asking for Arjun, when is he coming, why is he not hear. I tried to do some sand art with him but he wasn't into it. He is on dexamethasone so he was really hungry and moody. He tried to watch a movie, switched to tv show, back to movie, and then he went and cuddled his bunny in bed. He was just blah.
I was really proud of him though because he tried to get out of his funk and asked me to do some work on the NASA site. When Brian Day from NASA had stopped by he had told Amaey about moonzoo.org and galaxyzoo.org, here you can be a citizen scientist, he worked on that a bit and then luckily Arjun was here.... Then I was no longer needed.
Both the boys are playing a new game on the PS3 and after dinner, Arjun gets to go back with Swati and watch captain America. Apurva is taking a break today.
Rudolfo's rap
Go Amaey go amae it's your b'day it's your b'day
We gonna show them how we do it our way
Keep still like a statue please don't move
It's only seven minutes in that booth
I'm rapping for you in this groove
What's 9 times 9 I think its 81
Six more minutes and then we are done
I know I can't sing but I can rap
Right now it's the front side and then the back
A few more minutes and then it's a wrap
So don't move stay still let's chill I said please
You're on the camera so smile and say cheese
There's plenty of fish in the sea and you're the only one we catch and see
After this is done we can rest and go to sleep
Close our eyes and count some sheep
I know you are tired and so are we
Then when this is all done nap time please
Achoo excuse me but I did not sneeze
I'm tired of this I want my PS3
What's your game anything will do
Let's play some games me and you
We can watch a movie on the iPad
Don't get mad get glad
Or play some apps that nobody has
We are all so happy all of us hear
To help you Amaey have no fear
Yaaaaaaaaaaaaaayyyyyyyyy!
We gonna show them how we do it our way
Keep still like a statue please don't move
It's only seven minutes in that booth
I'm rapping for you in this groove
What's 9 times 9 I think its 81
Six more minutes and then we are done
I know I can't sing but I can rap
Right now it's the front side and then the back
A few more minutes and then it's a wrap
So don't move stay still let's chill I said please
You're on the camera so smile and say cheese
There's plenty of fish in the sea and you're the only one we catch and see
After this is done we can rest and go to sleep
Close our eyes and count some sheep
I know you are tired and so are we
Then when this is all done nap time please
Achoo excuse me but I did not sneeze
I'm tired of this I want my PS3
What's your game anything will do
Let's play some games me and you
We can watch a movie on the iPad
Don't get mad get glad
Or play some apps that nobody has
We are all so happy all of us hear
To help you Amaey have no fear
Yaaaaaaaaaaaaaayyyyyyyyy!
Thursday, July 21, 2011
Day -5
Radiation 3 times and today we decided to make the 7 mins fly by. We decided to sing to Amaey while he was being beamed. The transport nurse that walked us there was Mary so we had her sing first and she was such a sport, she sang Mary had a little lamb. Swati hummed some awesome tunes, and we sang Christmas carols, yup Christmas in July. Before we knew his 7 mins were up.
He wore his mask, hoped on his ivy pole and zoomed his way back to his room.
Apurva took Amaey for the 3:30 xrt and told me that one of the xrt techs made a rap for Amaey, he has taped it and I will post it when I have some time.
Gabriel stopped by with Davina and Arjun, Swati, and I took a break. We went to the Lego store and then to chevy's for dinner.
Apurva said that Amaey had a blast with Gabe and when I called at 10, he was fast asleep.
He wore his mask, hoped on his ivy pole and zoomed his way back to his room.
Apurva took Amaey for the 3:30 xrt and told me that one of the xrt techs made a rap for Amaey, he has taped it and I will post it when I have some time.
Gabriel stopped by with Davina and Arjun, Swati, and I took a break. We went to the Lego store and then to chevy's for dinner.
Apurva said that Amaey had a blast with Gabe and when I called at 10, he was fast asleep.
Wednesday, July 20, 2011
No title
This morning I got a call from a mom I got to know through Kids&Art. Her son participated in the Pixar art workshop. He is an amazing artist and a really good photographer. It was so nice to see him take his own time and work with artist Rinat. Later we stayed in touch. I really wanted to do an exhibit of his photographs. He told me that he would like Kids&Art to get all his work so that we can auction it off.
Just few weeks ago I met him at the hospital and when he found out that Amaey was a BMT candidate he said, from his wheelchair, please let me know if I can do anything for him, talk with him, share, encourage, this was the hardest thing I went through in my life. I was so touched, here is a teenager, so week and feeling sick but so big hearted to help another child going through a journey like his.
This morning I found out that he had passed away in the ICU on Monday. It was hard. It was really hard. I cannot imagine what a parent goes through and I just could not get myself together. His funeral was today at 1:30 and I really wanted to be there. I haven't had the courage to go to any of the funerals thus far. I couldn't look myself in the eye of the parent, but today I had to go and hug her.
When I saw her she said that he was working on a painting of a sunset and then he started a painting of a broken heart... As if he was expressing his feelings. She thanked K&A for getting him started with his art. Just 2 weeks ago he set up his website because the artist Rinat had encouraged him to.
His mom said he was very peaceful and as per his wishes they will take his ashes and spread them over the Colorado mountains since he was from Denver.
Just few weeks ago I met him at the hospital and when he found out that Amaey was a BMT candidate he said, from his wheelchair, please let me know if I can do anything for him, talk with him, share, encourage, this was the hardest thing I went through in my life. I was so touched, here is a teenager, so week and feeling sick but so big hearted to help another child going through a journey like his.
This morning I found out that he had passed away in the ICU on Monday. It was hard. It was really hard. I cannot imagine what a parent goes through and I just could not get myself together. His funeral was today at 1:30 and I really wanted to be there. I haven't had the courage to go to any of the funerals thus far. I couldn't look myself in the eye of the parent, but today I had to go and hug her.
When I saw her she said that he was working on a painting of a sunset and then he started a painting of a broken heart... As if he was expressing his feelings. She thanked K&A for getting him started with his art. Just 2 weeks ago he set up his website because the artist Rinat had encouraged him to.
His mom said he was very peaceful and as per his wishes they will take his ashes and spread them over the Colorado mountains since he was from Denver.
Day -6
Today's radiation schedule was the same. We just got done and are back in the room. Amaey is watching I-Carly and laughing away. I brought his keyboard from home and he played some music for the PT. He likes her, he showed her some of his karate moves and such.
Seems like fatigue is already setting in. He is feeling tired and slow as the day goes on. We played some frisbee and table tennis on the iPad and made a few art puzzles. This seems to have made him a bit happy. Now he is just waiting for Arjun... I can tell.
Family will come in the evening with dinner and that will cheer him up.
Seems like fatigue is already setting in. He is feeling tired and slow as the day goes on. We played some frisbee and table tennis on the iPad and made a few art puzzles. This seems to have made him a bit happy. Now he is just waiting for Arjun... I can tell.
Family will come in the evening with dinner and that will cheer him up.
Day -7
Tuesday was considered first day of the BMT process.
Amaey had radiation at 7:30am, 11:30am, and then at 3:30 pm.
Later his talking doctor stopped by, nutritionist chatted with Apurva, and his physical therapist stopped by but he had a huge headache at that time so she left. Swati, Arjun, and I stopped by at 7pm with dinner and then we left at 9pm.
All in all a good day.
Amaey had radiation at 7:30am, 11:30am, and then at 3:30 pm.
Later his talking doctor stopped by, nutritionist chatted with Apurva, and his physical therapist stopped by but he had a huge headache at that time so she left. Swati, Arjun, and I stopped by at 7pm with dinner and then we left at 9pm.
All in all a good day.
Tuesday, July 19, 2011
Trying to understand the meaning of life
I have been craving spiritual guidance since Amaey's recent relapse. I feel used and wiped clean of thinking and planning and doing anything. I have been craving some spiritual guidance. I downloaded the Bhagwad Gita on my iPad. This is an excerpt version of the big book but it is just the right amount of words for me right now.
Something I read today is what I need to keep telling myself--
"You have a right to perform your prescribed duty, but you are not entitled to the fruits of action. Never consider yourself the cause of the results of your activities, and never be attached to not doing your duty."
As a parent, especially a mom, I have wondered what I might have done wrong to have my child suffer in this way. I wondered where I failed as a mom. The Gita is teaching me to perform my duty as a mom and not do it for the outcome. This is hard because the outcome is what keeps you going. The hope that Amaey will get out of this vicious cycle, the hope of getting cured, the hope for a better life. How does one selflessly parent without hoping for the best for the child?
Something I read today is what I need to keep telling myself--
"You have a right to perform your prescribed duty, but you are not entitled to the fruits of action. Never consider yourself the cause of the results of your activities, and never be attached to not doing your duty."
As a parent, especially a mom, I have wondered what I might have done wrong to have my child suffer in this way. I wondered where I failed as a mom. The Gita is teaching me to perform my duty as a mom and not do it for the outcome. This is hard because the outcome is what keeps you going. The hope that Amaey will get out of this vicious cycle, the hope of getting cured, the hope for a better life. How does one selflessly parent without hoping for the best for the child?
Monday, July 18, 2011
This is it!
Amaey had his CT done this morning and the doctors confirmed that it looked good and have okayed him for his transplant. We have checked into our final destination, the Stem cell unit.
Tomorrow Amaey starts full body radiation starting at 7:30am.
We will know more details soon.
We are scrubbing down everything that comes in this room. We have to wear booties and do a detailed hand scrub before entering the unit.
There is a really nice big window and the sun is pouring in and beaming the entire room with warm light. We will be spending 6-8weeks in here. They gave me a 30day parking pass... This must really be it huh?
This is it.... Wish us luck.
Tomorrow Amaey starts full body radiation starting at 7:30am.
We will know more details soon.
We are scrubbing down everything that comes in this room. We have to wear booties and do a detailed hand scrub before entering the unit.
There is a really nice big window and the sun is pouring in and beaming the entire room with warm light. We will be spending 6-8weeks in here. They gave me a 30day parking pass... This must really be it huh?
This is it.... Wish us luck.
Thursday, July 07, 2011
Do you really want to know
Another crazy day at the hospital. Another plan of action. Wow, when will this stop?
Today Amaey had another CT for his sinus and chest and then we went for labs after which was his procedure at 12:30, they finally took him in at 2:30. They took out his port and picc line and placed a new line called hickman, this is what they need before going in for BMT.
They also did a bronchoscopy to flush the spot in his lung. They will do a culture and the results take 7-10 days if there is soethi g brewing. He did not come into the recovery room until 6:00. He is home now, very groggy and slow and in pain from the various procedures but relaxed to be back.
As of today his BMT schedule has changed, he will get admitted tomorrow for some medications and radiation and if he tolerates that well they will let him continue as out patient for the next 2 weeks. Transplant will not take place until they do another CT after 2 weeks and check his lungs again. They need the spot to remain the same or get smaller before they can proceed. They need to rule out a fungal infection. Because that is life threatening after BMT.
So more waiting and uncertainty but some movement to help him with his skin rash and possible lung infection.
Today Amaey had another CT for his sinus and chest and then we went for labs after which was his procedure at 12:30, they finally took him in at 2:30. They took out his port and picc line and placed a new line called hickman, this is what they need before going in for BMT.
They also did a bronchoscopy to flush the spot in his lung. They will do a culture and the results take 7-10 days if there is soethi g brewing. He did not come into the recovery room until 6:00. He is home now, very groggy and slow and in pain from the various procedures but relaxed to be back.
As of today his BMT schedule has changed, he will get admitted tomorrow for some medications and radiation and if he tolerates that well they will let him continue as out patient for the next 2 weeks. Transplant will not take place until they do another CT after 2 weeks and check his lungs again. They need the spot to remain the same or get smaller before they can proceed. They need to rule out a fungal infection. Because that is life threatening after BMT.
So more waiting and uncertainty but some movement to help him with his skin rash and possible lung infection.
Wednesday, July 06, 2011
Moving forward
We know that everyone is waiting anxiously to know whether Amaey has found a donor match, we just got final confirmation that they have found a match for Amaey and they will be going ahead with an unrelated donor instead of Apurva or myself. The donor is a young male from the US, that is all the info they can share with us. After a year if the donor initiates it we can meet but until then it will be a secret to us.
We are really thankful to everyone for helping with the donor drives and adding to the pool of donors. We would really like to thank Davina, Maureen, Helen, Purvi-Samir and Renu-Sunil for helping with the drives. I know there were many people involved and all the names are not coming to me at the moment. A special thank you to Ezra for sending Amaey a video a day. These videos mean a lot to us, for Amaey he does not understand what the fuss is about and we do not plan to explain.
We cannot thank Magda enough, thanks to her all the drives were expedited and who knows, Amaey's donor might be from one of those drives. We really cannot thank everyone enough. Without disturbing us and respecting eveeything we were going through, our friends took on this momentous task and spent several days and weeks in putting all the drives together.
Thank you to everyone for calling and stopping by and reaching out to us in several ways. We are going to get really busy now. I know we have not been talking and sharing a lot but let me be honest, it is really hard to do so. Over the past 2 months since Amaey relapsed, we have gone through an eternity of information and many life changing decisions, these are very hard to express and very hard to talk over the phone or skype. We are so tired sometimes that having a conversation or explaing what is going on feels like a chore.
If everything goes as planned, he will be admitted to the hospital on July 11 and will undergo his transplant on the 18th. He will have 4 days of radiation then 2 days of chemo and 1 day of rest followed by transplant.
The path ahead is long, hard, complicated, and full of risks but this is Amaey's only chance. This is the chance for a second life, for a fresh start. We don't know what lays ahead but we do know that we will never forget where we are coming from. It's been 6 years since Amaey was first diagnosed and he has been through many rounds of chemo, transfusions, procedures, and ICU visits.
The BMT journey is new and unlike anything he has gone through, we know he is a tough child and a fighter. We will be with him all the way, all the time and we will be waiting for him at the end of the tunnel and we pray that he will make it through.
We are really thankful to everyone for helping with the donor drives and adding to the pool of donors. We would really like to thank Davina, Maureen, Helen, Purvi-Samir and Renu-Sunil for helping with the drives. I know there were many people involved and all the names are not coming to me at the moment. A special thank you to Ezra for sending Amaey a video a day. These videos mean a lot to us, for Amaey he does not understand what the fuss is about and we do not plan to explain.
We cannot thank Magda enough, thanks to her all the drives were expedited and who knows, Amaey's donor might be from one of those drives. We really cannot thank everyone enough. Without disturbing us and respecting eveeything we were going through, our friends took on this momentous task and spent several days and weeks in putting all the drives together.
Thank you to everyone for calling and stopping by and reaching out to us in several ways. We are going to get really busy now. I know we have not been talking and sharing a lot but let me be honest, it is really hard to do so. Over the past 2 months since Amaey relapsed, we have gone through an eternity of information and many life changing decisions, these are very hard to express and very hard to talk over the phone or skype. We are so tired sometimes that having a conversation or explaing what is going on feels like a chore.
If everything goes as planned, he will be admitted to the hospital on July 11 and will undergo his transplant on the 18th. He will have 4 days of radiation then 2 days of chemo and 1 day of rest followed by transplant.
The path ahead is long, hard, complicated, and full of risks but this is Amaey's only chance. This is the chance for a second life, for a fresh start. We don't know what lays ahead but we do know that we will never forget where we are coming from. It's been 6 years since Amaey was first diagnosed and he has been through many rounds of chemo, transfusions, procedures, and ICU visits.
The BMT journey is new and unlike anything he has gone through, we know he is a tough child and a fighter. We will be with him all the way, all the time and we will be waiting for him at the end of the tunnel and we pray that he will make it through.
Monday, July 04, 2011
The best B'day
I could not have wished for a better birthday present for me. Amaey was feeling well, he was so happy and engaged. He had the energy to talk and run around and be himself.
Apurva made an amazing breakfast and later we had a picnic lunch in our backyard with fajitas and mango salsa courtesy of chef Apurva. It was so calm and quiet in the yard, it almost felt normal. The four of us by ourselves, not taking about Amaey, listening to the kids chatter, having a normal family conversation, reveling in the beauty of the big trees and the shade that kept us cozy and the amazing lunch that made us all sleepy.
A wonderful nap and then surprise visit from Rita and Sid. Amaey was so happy to see Sid, he hadn't seen him in almost 2 months and that is the longest ever. We always try and get together but with life so busy and our germ radar so amped up we have tried to not have guests over especially kids because germs and infections are the biggest risks for Amaey. Kids are kids, they touch everything, their clothes have been everywhere, and they will not think twice before fist fighting, or arm wrestling with Amaey. So getting to see Sid and play with him was icing on the cake for Amaey's normal day.
Top the day with Pratish, Bharvi, Ashish, and Aditi stopping by and we had the making of a next to normal day.
We did start panicking when everyone started overlapping though. We have tried to limit 1 guest at a time and suddenly we had all these people... I could see Apurva getting very nervous. We were fine if everyone stayed away from Amaey so we all moved to the yard and enjoyed some fun times there. It got really sad when Amey realized that there were so many people outside and that little Adi and Raj uncle were out there playing as well. Amaey loves Adi and he was about to dash out the door to go hug him and we had to pull the plug. It was heartbreaking because Amaey was really sad and started crying. That was a wake-up call that things are not that normal, we can't let our guards down. We have been so careful and it would be such a shame if he caught an infection during his most critical week.
However, it was a beautiful day with love and wishes pouring in from everywhere. It was a happy day and now that it is Monday we are hoping we can stretch the long weekend so that we don't have to deal with what the week has to bring.
The best part was that the four of us were home, happy, and relaxed.
Apurva made an amazing breakfast and later we had a picnic lunch in our backyard with fajitas and mango salsa courtesy of chef Apurva. It was so calm and quiet in the yard, it almost felt normal. The four of us by ourselves, not taking about Amaey, listening to the kids chatter, having a normal family conversation, reveling in the beauty of the big trees and the shade that kept us cozy and the amazing lunch that made us all sleepy.
A wonderful nap and then surprise visit from Rita and Sid. Amaey was so happy to see Sid, he hadn't seen him in almost 2 months and that is the longest ever. We always try and get together but with life so busy and our germ radar so amped up we have tried to not have guests over especially kids because germs and infections are the biggest risks for Amaey. Kids are kids, they touch everything, their clothes have been everywhere, and they will not think twice before fist fighting, or arm wrestling with Amaey. So getting to see Sid and play with him was icing on the cake for Amaey's normal day.
Top the day with Pratish, Bharvi, Ashish, and Aditi stopping by and we had the making of a next to normal day.
We did start panicking when everyone started overlapping though. We have tried to limit 1 guest at a time and suddenly we had all these people... I could see Apurva getting very nervous. We were fine if everyone stayed away from Amaey so we all moved to the yard and enjoyed some fun times there. It got really sad when Amey realized that there were so many people outside and that little Adi and Raj uncle were out there playing as well. Amaey loves Adi and he was about to dash out the door to go hug him and we had to pull the plug. It was heartbreaking because Amaey was really sad and started crying. That was a wake-up call that things are not that normal, we can't let our guards down. We have been so careful and it would be such a shame if he caught an infection during his most critical week.
However, it was a beautiful day with love and wishes pouring in from everywhere. It was a happy day and now that it is Monday we are hoping we can stretch the long weekend so that we don't have to deal with what the week has to bring.
The best part was that the four of us were home, happy, and relaxed.
Sunday, July 03, 2011
Good, bad and the ugly
Last week has been quite a week for us. Just when you think what can be worse... you end up finding that the bets are higher on everything.
This journey has taught us one thing for sure... do not take anything for granted.
On Friday, Amaey and I went in the hospital at 6:30am for his MRI, CT scan, and x-rays. They wanted the results back before our BMT meeting at 1:15. They also decided to start Amaey on a consolidation chemo to bridge the gap from now until his transplant, so after all the scans we went to the clinic for the chemo. At 12:15 I dropped Amaey home and then Apurva and I left for the hospital for our BMT consent meeting.
Yesterday Sheila had stopped by and while talking with her I realized that we need to be grateful for the fact that one of us could be a potential donor for Amaey. But it is really hard for us to think that way. When you sit through those BMT meetings you come out of there not knowing which way to turn. Our last meeting was a consent meeting, in this meeting they went over all the results for the tests Amaey has been through, they found an infection in his sinus and an infection brewing in his lungs. They started him on antibiotics for both. They will need to repeat his CTscan next Thursday to see if the infection is growing or contained.
He is also allergic to one of the antibiotics he has been getting, Vancomycin. He gets Benadryl with it however we noticed that he had some spots showing up on his body while he was getting vanco at home. We have been watching those spots for a week and on Friday the doctors asked for the dermatologist to see Amaey, while we were at the BMT consult meeting Aditi brought Amaey and Arjun to dermatology. The derms decided to do a biopsy on two of his spots so Apurva left the meeting as soon as it ended and ran over to Amaey across from the hospital. I stayed behind to wrap-up the meeting and sign some research papers. Amaey's oncology doctor stopped by an hour later to see if we were still in the consultation room and I was, I asked him why he decided on the biopsy and he said he is worried that leukemic cells could be showing up in his skin.... WHAT? You really got to be kidding right? If there is no cancer showing in his MRD and he is considered in remission how can there still be leukemic cells?
I just looked at him and said, what if... well we would need to meet and rethink the next steps if that were the case. The biopsy results will be back on Thursday so we will know more then.
I decided to not give it too much thought, take it in our stride and move on with the one day at a time mantra we have been following. Bring it on... seriously, just bring it all on now, so that if and when the BMT happens we will hopefully have thought of everything and will know what to expect in terms of recurrence. We might be living in sunny California but on our house the weather changes every few hours, never know when the calm changes into a storm or a scary tsunami.
This journey has taught us one thing for sure... do not take anything for granted.
On Friday, Amaey and I went in the hospital at 6:30am for his MRI, CT scan, and x-rays. They wanted the results back before our BMT meeting at 1:15. They also decided to start Amaey on a consolidation chemo to bridge the gap from now until his transplant, so after all the scans we went to the clinic for the chemo. At 12:15 I dropped Amaey home and then Apurva and I left for the hospital for our BMT consent meeting.
Yesterday Sheila had stopped by and while talking with her I realized that we need to be grateful for the fact that one of us could be a potential donor for Amaey. But it is really hard for us to think that way. When you sit through those BMT meetings you come out of there not knowing which way to turn. Our last meeting was a consent meeting, in this meeting they went over all the results for the tests Amaey has been through, they found an infection in his sinus and an infection brewing in his lungs. They started him on antibiotics for both. They will need to repeat his CTscan next Thursday to see if the infection is growing or contained.
He is also allergic to one of the antibiotics he has been getting, Vancomycin. He gets Benadryl with it however we noticed that he had some spots showing up on his body while he was getting vanco at home. We have been watching those spots for a week and on Friday the doctors asked for the dermatologist to see Amaey, while we were at the BMT consult meeting Aditi brought Amaey and Arjun to dermatology. The derms decided to do a biopsy on two of his spots so Apurva left the meeting as soon as it ended and ran over to Amaey across from the hospital. I stayed behind to wrap-up the meeting and sign some research papers. Amaey's oncology doctor stopped by an hour later to see if we were still in the consultation room and I was, I asked him why he decided on the biopsy and he said he is worried that leukemic cells could be showing up in his skin.... WHAT? You really got to be kidding right? If there is no cancer showing in his MRD and he is considered in remission how can there still be leukemic cells?
I just looked at him and said, what if... well we would need to meet and rethink the next steps if that were the case. The biopsy results will be back on Thursday so we will know more then.
I decided to not give it too much thought, take it in our stride and move on with the one day at a time mantra we have been following. Bring it on... seriously, just bring it all on now, so that if and when the BMT happens we will hopefully have thought of everything and will know what to expect in terms of recurrence. We might be living in sunny California but on our house the weather changes every few hours, never know when the calm changes into a storm or a scary tsunami.
Juices for health
Amaey has a sty and I was looking for some home remedies and came across this-
Acidosis: Carrot, beet, cucumber and spinach
Acne: Carrot, lettuce and spinach
Allergies: Carrot, lettuce and spinach
Anemia: Beet, celery, carrot
Appendicitis: Carrot, beet and spinach
Arterioscurosis: Carrot, celery, lettuce and spinach
Vegetable juice and arthritis: Cucumber, beet, celery, carrot and watercress
Asthma: Carrot, radish and celery
Bronchitis: Tomato, carrot, onion and spinach
Colds: Carrot, celery, onion and spinach
Constipation: Carrot, beet, spinach and watercress
Colitis: Carrot, beet cucumber and spinach
Vegetable juice for diabetics: Carrot, celery, lettuce and spinach
Dyspepsia: Carrot, beet, cucumber and spinach
Eczema: Carrot, spinach, cucumber and beet
Epilepsy: Carrot, celery and spinach
Eye disorder: Tomato, carrot, celery, parsley and spinach
Fatigue: Carrot, spinach, beet and cucumber
Gout: Tomato, cucumber, beet, carrot, celery, spinach
Headache: Carrot, lettuce and spinach
Heart disease: Carrot, beet, cucumber and spinach
Hypertension: Carrot, spinach, beet and cucumber
Influenza: Carrot, onion and spinach
Insomnia: Lettuce, carrot and celery
Jaundice: Carrot, celery, spinach, beet and cucumber
Obesity: Tomato, beet, cabbage, lettuce, spinach and carrot
Piles: Carrot, spinach, turnip, and watercress
Sinus problem: Tomato, carrot, onion and spinach
Tonsillitis: Carrot, spinach, beet and cucumber
I got this info from http://www.herbal-home-remedies.com/index.html
sometimes it is hard to know if the source of info is good so common sense and cross checking helps. I did look up other sites for sty remedy and i'm fine with the tea bags on the eye.... I will do it.
Acidosis: Carrot, beet, cucumber and spinach
Acne: Carrot, lettuce and spinach
Allergies: Carrot, lettuce and spinach
Anemia: Beet, celery, carrot
Appendicitis: Carrot, beet and spinach
Arterioscurosis: Carrot, celery, lettuce and spinach
Vegetable juice and arthritis: Cucumber, beet, celery, carrot and watercress
Asthma: Carrot, radish and celery
Bronchitis: Tomato, carrot, onion and spinach
Colds: Carrot, celery, onion and spinach
Constipation: Carrot, beet, spinach and watercress
Colitis: Carrot, beet cucumber and spinach
Vegetable juice for diabetics: Carrot, celery, lettuce and spinach
Dyspepsia: Carrot, beet, cucumber and spinach
Eczema: Carrot, spinach, cucumber and beet
Epilepsy: Carrot, celery and spinach
Eye disorder: Tomato, carrot, celery, parsley and spinach
Fatigue: Carrot, spinach, beet and cucumber
Gout: Tomato, cucumber, beet, carrot, celery, spinach
Headache: Carrot, lettuce and spinach
Heart disease: Carrot, beet, cucumber and spinach
Hypertension: Carrot, spinach, beet and cucumber
Influenza: Carrot, onion and spinach
Insomnia: Lettuce, carrot and celery
Jaundice: Carrot, celery, spinach, beet and cucumber
Obesity: Tomato, beet, cabbage, lettuce, spinach and carrot
Piles: Carrot, spinach, turnip, and watercress
Sinus problem: Tomato, carrot, onion and spinach
Tonsillitis: Carrot, spinach, beet and cucumber
I got this info from http://www.herbal-home-remedies.com/index.html
sometimes it is hard to know if the source of info is good so common sense and cross checking helps. I did look up other sites for sty remedy and i'm fine with the tea bags on the eye.... I will do it.
Thursday, June 30, 2011
Remission Baby!
Yes we did get an email late last night saying Amaey's MRD showed signs of remission. But we were not ready to accept the news after our consultation meeting in the afternoon. We wanted to make sure we understood what it meant. We met with his team again today and they confirmed that amaey is in remission and this is a window where he should be undergoing his transplant. The only workup left is MRI/CT/Xrays and that will happen tomorrow at 6:30am. Our BMT consult is at 1:15pm and that is when we sign all the paperwork. This will officially put Amaey on their calendar and if all goes as planned he will be admitted to the hospital on July 11 in the stem cell unit.
But life is not that simple is it...
As I had mentioned before his HLA typing is very common but unique as well and yesterday when the St. Jude's doctor looked at it again they want Apurva and me tested in detail because they think that we could be possible donors too. This is very unheard off. This has thrown the entire team in a loop. Their goal and our goal is to do all the research and legwork upfront.
So they are entertaining all these possibilities. We won't know until Tuesday about the final decision. There are lots of factors at play here. If they take us then there is no graft versus host but they do want some graft versus host disease to happen in his body. There are a lot of tests that they will do on our blood work and on Amaey's and then decide if it is better to go with us or an unrelated donor.
Regardless, we are happy that he is in remission. We are hopeful that he will stay healthy and the maintenance chemo they will give him in the interim will hold him up until transplant.
But life is not that simple is it...
As I had mentioned before his HLA typing is very common but unique as well and yesterday when the St. Jude's doctor looked at it again they want Apurva and me tested in detail because they think that we could be possible donors too. This is very unheard off. This has thrown the entire team in a loop. Their goal and our goal is to do all the research and legwork upfront.
So they are entertaining all these possibilities. We won't know until Tuesday about the final decision. There are lots of factors at play here. If they take us then there is no graft versus host but they do want some graft versus host disease to happen in his body. There are a lot of tests that they will do on our blood work and on Amaey's and then decide if it is better to go with us or an unrelated donor.
Regardless, we are happy that he is in remission. We are hopeful that he will stay healthy and the maintenance chemo they will give him in the interim will hold him up until transplant.
Madame Atoms
Ms Leslie stopped by today and that made both the boys really happy. Madame Atoms, that is her science club name. Amaey loves science. When he is prepped for his anesthesia he tests everyone on their atoms, planets, and such. Ms Leslie brought with he a wonderful book, a game, and a movie on germs, and the cells and how they interact in the body. I had told her that Amaey and Arjun need to get really serious about germs and hygiene. We know that if Amaey learns about this from a scientific angle he will retain it more then if it is required by mom. Oh that pesky, pushy mom.
On Saturday, Leslie stopped by with a very special guest, Brain Day from NASA. You should have seen the boys and their excitement. He talked about the Moon and Mars and water on moon. He brought a few posters along and alked about ways Amaey can help while he is in the hospital. We were also sad to find out that Brian was recently diagnosed with cancer too. They were bonding on the regimen of radiation that each will have to go through.
They have made many plans to go to Nasa, Foothill college observatory, and few other excursions once they were both done with their treatment. Amaey was like a sponge soaking in everything. He really misses his karate and science club and seeing Leslie and Brian Day must have felt really good.
On Saturday, Leslie stopped by with a very special guest, Brain Day from NASA. You should have seen the boys and their excitement. He talked about the Moon and Mars and water on moon. He brought a few posters along and alked about ways Amaey can help while he is in the hospital. We were also sad to find out that Brian was recently diagnosed with cancer too. They were bonding on the regimen of radiation that each will have to go through.
They have made many plans to go to Nasa, Foothill college observatory, and few other excursions once they were both done with their treatment. Amaey was like a sponge soaking in everything. He really misses his karate and science club and seeing Leslie and Brian Day must have felt really good.
Wednesday, June 29, 2011
No news
No news yet on the results. We did go in for our meeting but the MRD results were not back from St. Judes. We did start talking about all the options that lay ahead for us incase Amaey is not in remission. It was not a fun conversation because there were lots of ifs and buts and in the end we decided to wait for the results. They will have the results tomorrow and we do have an appointment with Radiation so we are hoping to get to know more.
Tuesday, June 28, 2011
Bone marrow
Amaey had his bone marrow procedure on Monday. Wednesday we have a consultation with his oncology team and they will discuss the results.
We are a bit nervous, he could be in remission and then suddenly things will move fast towards his transplant or they might have to discuss plan B. Plan B could be more chemo and/or go to St. jude's for NK cell transfer. We frankly have no idea and we are trying not to think about it but we both have the silent treatment with long sighs going on so I know what we are thinking.
We don't really know what to wish for other then the best possible outcome for him.
We are a bit nervous, he could be in remission and then suddenly things will move fast towards his transplant or they might have to discuss plan B. Plan B could be more chemo and/or go to St. jude's for NK cell transfer. We frankly have no idea and we are trying not to think about it but we both have the silent treatment with long sighs going on so I know what we are thinking.
We don't really know what to wish for other then the best possible outcome for him.
Friday, June 24, 2011
Neuro
Waiting for Amaey to be done with his neuro psych appt. They have been working for 3hrs now. He did come out couple of ties a d got a break but this is long. They do an IQ test, verbal, visual, cognitive tests. Math, reading, writing, how he holds his pencil, what he has to say about himself, what is lacking, what has changed, what are his good qualities.... They are charting out who Amaey is as a person.
Next we take a lunch break. Apiece and Arjun will come here with lunch and then after lunch I will take Arjun home and source will take Amaey to his pulmonary Fu croon test. He does not need a transfusion today (yeah) so then the boys will come home.
Next we take a lunch break. Apiece and Arjun will come here with lunch and then after lunch I will take Arjun home and source will take Amaey to his pulmonary Fu croon test. He does not need a transfusion today (yeah) so then the boys will come home.
Thursday, June 23, 2011
Future
Today Apurva and I went for a nice walk before dinner. It is funny that I was feeling happy just for the mere reason that we came back home after the appt. So strange isn't it, life is so tentative for us, when we take him in we really never know if we will be able to bring him back home with us.
This is a fear that has set in for me now. When he goes in for his BMT we really do not know if he will come back. Apurva and I talk about this, sometimes he feels down and other times it is me feeling withdrawn about it. Underlying, we both have faith that he will be fine and this will be a new life for Amaey. It's a second chance.
I'm taking little movies of the boys everyday. Capture each precious moment.
We are staying very positive but sometimes it does get hard. Most of the time we just have to look at him and his amazing spirit and that completely lifts us up and makes us forget everything.
Tomorrow will be a new day. Yesterday will be a past. Today is all we have and we are making the most of it.
Kids & Art
The hospital stopped by at our kids & Art office to take a look at all the art. They picked 25 pieces some paintings, photography, and two masks. They will be displaying our art in a display case near the cafeteria. This is really wonderful news because most of the kids and families that participate in Kids & Art are from the hospital.
I can see Amaey excited to hear from his doctors and nurses when they see his art. They will get to see another side of these kids, the creative side. The non slow and grouchy side. instead the bright and cheerful side.
All these years walking around the hospital and seeing art on the wall I have always wanted to see the kids art on those walls. I finally get to get their art displayed and the hospital art buying committie might buy some pieces as well.
I can see Amaey excited to hear from his doctors and nurses when they see his art. They will get to see another side of these kids, the creative side. The non slow and grouchy side. instead the bright and cheerful side.
All these years walking around the hospital and seeing art on the wall I have always wanted to see the kids art on those walls. I finally get to get their art displayed and the hospital art buying committie might buy some pieces as well.
Sunday, June 19, 2011
Happy Fathers Day
To all the special dads who take the time to be themselves, share their love and knowledge with their kids, laugh and joke with them, teach them to respect who they are.... Happy Fathers Day!
One dad that deserves a shout out is Apurva. We all go through journeys in our lives but what we learn and become after each journey is for future to tell. When we heard about Amaey's relapse I didn't think I could have kept going. I did not have any energy left in me. I had taken the job of the primary caregiver but I felt like I had used myself up. Apurva on the other hand was just there, he was there 100% as a dad, as a cook, as a coach, as a teacher, as a joker, and as a worrier. He evolved into this person, a dad with his head tight over his shoulders.
Happy Fathers Day to all dads!
One dad that deserves a shout out is Apurva. We all go through journeys in our lives but what we learn and become after each journey is for future to tell. When we heard about Amaey's relapse I didn't think I could have kept going. I did not have any energy left in me. I had taken the job of the primary caregiver but I felt like I had used myself up. Apurva on the other hand was just there, he was there 100% as a dad, as a cook, as a coach, as a teacher, as a joker, and as a worrier. He evolved into this person, a dad with his head tight over his shoulders.
Happy Fathers Day to all dads!
Saturday, June 18, 2011
Vampire strikes
We came in to the day hospital at 8am this morning. This was a scheduled transfusion. We did not want Amaey to get both platelets and blood on the same day. If that is what caused a fever last time it wasn't worth putting him through it again.
The hospital complied and let us divide the transfusions. Amaey is benadryled out and sleeping. They are watching his blood pressure because it is low and monitoring him for fevers.
Apurva and Arjun are on the plane to LA. They will be attending the Cars 2 premiere. I'm so glad that they could go. We did not book their tkts until yesterday afternoon. It is hard to plan so we don't. If it happens it happens. I was scrambling to find decent clothes for Arjun yesterday. His jacket was small on him and all his shirts felt snug. My friends were all looking into their kids closets to save me a trip to the mall but finally at 7:45 pm we did end up at the mall. Arjun has a style now. I was impressed, this kid knows what he will wear and absolutely not look at. No tie or shirt for me, I will wear a nice design t-shirt with my jacket and jeans. OK, I can live with that. Can we go get a haircut? No, I like it long and I'm going to wear it.... And he shows it to me, but it won't stay that way the whole time because I really don't like all this hair on my forehead. WOW, this child is almost a teenager, when did that happen?
I feel like every time we are busy with Amaey, Arjun regresses or grows, oscillating between independence and his need to be babied at the same time.
Parenting is quite amazing. I catch myself shaking my head when I'm alone, can't believe how much can happen in one lifetime. Who says life is short? I think life is long enough to live many lives, be many people, make many mistakes, find new meaning, and then start all over again.
The hospital complied and let us divide the transfusions. Amaey is benadryled out and sleeping. They are watching his blood pressure because it is low and monitoring him for fevers.
Apurva and Arjun are on the plane to LA. They will be attending the Cars 2 premiere. I'm so glad that they could go. We did not book their tkts until yesterday afternoon. It is hard to plan so we don't. If it happens it happens. I was scrambling to find decent clothes for Arjun yesterday. His jacket was small on him and all his shirts felt snug. My friends were all looking into their kids closets to save me a trip to the mall but finally at 7:45 pm we did end up at the mall. Arjun has a style now. I was impressed, this kid knows what he will wear and absolutely not look at. No tie or shirt for me, I will wear a nice design t-shirt with my jacket and jeans. OK, I can live with that. Can we go get a haircut? No, I like it long and I'm going to wear it.... And he shows it to me, but it won't stay that way the whole time because I really don't like all this hair on my forehead. WOW, this child is almost a teenager, when did that happen?
I feel like every time we are busy with Amaey, Arjun regresses or grows, oscillating between independence and his need to be babied at the same time.
Parenting is quite amazing. I catch myself shaking my head when I'm alone, can't believe how much can happen in one lifetime. Who says life is short? I think life is long enough to live many lives, be many people, make many mistakes, find new meaning, and then start all over again.
Friday, June 17, 2011
Today
Apurva took Amaey for his Nuro Psych appointment in the morning. It was 3 hours long and Amaey said he had a huge headache after. What is democracy. Can you arrange all these white and red blocks in a certain order using only 9 blocks. Amaey would not tell us more but looking at all the forms we have to fill, I'm sure it was a lot of work. Apurva was so mad (in a funny way), the doctor is greedy... 3hrs, what is she going to ask an 8 year old for 3hrs?
They came home for an hour, we had lunch and then I took him back to the hospital for a platelet transfusion. They gave him benadryl so he is fast asleep. Tomorrow at 8am we have to come back to the day hospital for a blood transfusion.
Last time he had a fever after he got both back-to-back so this time I insisted on breaking them up over two days. We don't mind driving him around if that will help him tolerate all of this better.
They came home for an hour, we had lunch and then I took him back to the hospital for a platelet transfusion. They gave him benadryl so he is fast asleep. Tomorrow at 8am we have to come back to the day hospital for a blood transfusion.
Last time he had a fever after he got both back-to-back so this time I insisted on breaking them up over two days. We don't mind driving him around if that will help him tolerate all of this better.
Amaey in photos
Amaey opening some gifts
Amaey playing starwar madlibs with Christopher via skype
Aloha! and yes the little figurine next to Amaey is... you guessed it Gabriele:)
Since Amaey did not get to attend the screening of Cars 2, they sent him the screening at the hospital. Here, Apurva, Amaey, and Arjun enjoying Cars 2 in his hospital room.
BMT work-up
The Bone Marrow Transplant (BMT) team has started their work-up on Amaey. This means they are starting all the prep. He needs to be evaluated by every department to do a baseline test. They want to mark where Amaey is right now and this will be their reference for after BMT to get him back to his pre-BMT levels.
Here is what is involved-
June 15 Audiology
June 16 Nuclear Med (kidney function)
June 17 Neuro Psych evaluation
June 21 Opthalmology
June 23 EKG/ECG
June 24 Neuro Psych part 2 and PFT(pulmonary function)
June 29 Radiation consult
A dentist will evaluate him too.
Sounds intense and it is but the funny thing is we are happy that we can take him home each day. His hair is starting to fall like crazy. We were teasing him today that he is shedding like a cat and we need to vacuum after him. He really wants to go for a haircut so that he can cur his hair really short. I would like that too because right now he has a full head of hair and I don't like seeing those bald patches on him, I'd rather he have a shaved hair and then if it is all gone then it is not a huge drastic change.
Here is what is involved-
June 15 Audiology
June 16 Nuclear Med (kidney function)
June 17 Neuro Psych evaluation
June 21 Opthalmology
June 23 EKG/ECG
June 24 Neuro Psych part 2 and PFT(pulmonary function)
June 29 Radiation consult
A dentist will evaluate him too.
Sounds intense and it is but the funny thing is we are happy that we can take him home each day. His hair is starting to fall like crazy. We were teasing him today that he is shedding like a cat and we need to vacuum after him. He really wants to go for a haircut so that he can cur his hair really short. I would like that too because right now he has a full head of hair and I don't like seeing those bald patches on him, I'd rather he have a shaved hair and then if it is all gone then it is not a huge drastic change.
June 13
On Tuesday we were supposed to have a consult with Amaey's main doctor. So early in the morning Amaey wanted to shower and eat his breakfast and be ready. He had a whole speech ready for the doctors, reasons why they should send him home.
So he decided to act it out and be prepared. He asked me to be the doctor and he was - Amaey. It was really funny but he was prepared.
finally when the doctors did show up he was tongue tied. Once he was prompted he was on a roll.
1) I have not had a fever since I got here. I'm fine and bored.
2) My cultures are negative
3) There is construction starting in the hospital which means I can't leave my room at all. I will be better off at my house and more happy too.
The doctors agreed to all his points but insisted that for an AML patient they really do not advise to leave the hospital until the counts are up.
Amaey promised that at the slightest sight of fever or problems he will work with us and come to the hospital. They made his do a pinky promise and told us that this was our one and only escape from the hospital pass. Next time we will not be able to leave until they think he can. We greed to all of that and finally at 6:30 after all the meds and paperwork was complete we came home.
It was really nice because my sister was leaving for Florida and she got to spend a few hours with Amaey before leaving.
So he decided to act it out and be prepared. He asked me to be the doctor and he was - Amaey. It was really funny but he was prepared.
finally when the doctors did show up he was tongue tied. Once he was prompted he was on a roll.
1) I have not had a fever since I got here. I'm fine and bored.
2) My cultures are negative
3) There is construction starting in the hospital which means I can't leave my room at all. I will be better off at my house and more happy too.
The doctors agreed to all his points but insisted that for an AML patient they really do not advise to leave the hospital until the counts are up.
Amaey promised that at the slightest sight of fever or problems he will work with us and come to the hospital. They made his do a pinky promise and told us that this was our one and only escape from the hospital pass. Next time we will not be able to leave until they think he can. We greed to all of that and finally at 6:30 after all the meds and paperwork was complete we came home.
It was really nice because my sister was leaving for Florida and she got to spend a few hours with Amaey before leaving.
Sunday, June 12, 2011
Staying here forever...
Yesterday the doctors came in for their rounds and informed us that they would like to have Amaey stay here until he is handed off to the transplant team. You should have seen the disbelief in Amaey and my face. We felt so cheated. Amaey pointed out that he has not had a fever since he came in here, he is feeling great, he has no other symptoms and why would they make him stay here.
They have put us in a Hepa filtered room, this room has a double door and is very secure. They are trying to keep him as safe as possible. However we know that if he is in the hospital the chances of him catching something are much higher. They listened to everything we had to say but seemed pretty set in their plan.
This morning Amaey's cultures came back negative and the doctors said that they will talk with his team and then decide what to do. We have stopped fighting at this point.
In the meantime we are making him very comfortable here. This afternoon, Amaey and I enjoyed our lunch by the fountain. It was nice and sunny. We are back in the room and Amaey is watching food network. I'm sure he will find a recipe that he will make me quickly write down and then call Apurva to cook it for dinner tonight.
Yesterday we were watching diners, drive-ins, and dives and he looked up at me and said, doesn't Rita aunty make really good french toast? He takes my phone and calls her. Rita aunty can you bring me some french toast for breakfast.... and guess what Rita aunty falls for his whims. He gets yummy french toast, strawberries and syrup... he is in food heaven.
For him food is his only connection to the outside world. He has everything else here but the fact that that he can plan his meals and get them delivered fresh makes a world of a difference to him.
Anything to keep him happy...
They have put us in a Hepa filtered room, this room has a double door and is very secure. They are trying to keep him as safe as possible. However we know that if he is in the hospital the chances of him catching something are much higher. They listened to everything we had to say but seemed pretty set in their plan.
This morning Amaey's cultures came back negative and the doctors said that they will talk with his team and then decide what to do. We have stopped fighting at this point.
In the meantime we are making him very comfortable here. This afternoon, Amaey and I enjoyed our lunch by the fountain. It was nice and sunny. We are back in the room and Amaey is watching food network. I'm sure he will find a recipe that he will make me quickly write down and then call Apurva to cook it for dinner tonight.
Yesterday we were watching diners, drive-ins, and dives and he looked up at me and said, doesn't Rita aunty make really good french toast? He takes my phone and calls her. Rita aunty can you bring me some french toast for breakfast.... and guess what Rita aunty falls for his whims. He gets yummy french toast, strawberries and syrup... he is in food heaven.
For him food is his only connection to the outside world. He has everything else here but the fact that that he can plan his meals and get them delivered fresh makes a world of a difference to him.
Anything to keep him happy...
Friday, June 10, 2011
No fever
We checked in this morning but Amaey has not had fever which is really good. All the doctors come in and wonder why he is here because he looks really good. We think he spiked a fever from the transfusion but we won't know until his cultures come back on Sunday.
Today was the first time Amaey had a meltdown. He was really upset when we had to leave for the hospital this morning. He had literally just got home after 2 weeks in the hospital, he was so looking forward to spending time with Arjun on the weekend. He just hugged me and cried so much. I told him it was ok to cry, instead it was ok if he wanted to scream. It wasn't fair at all and it really sucked. We just sat in the kitchen and let him cry. Once he was quiet I asked him if he was ready to leave and he was.
He gave the doctors and nurses a real hard time too. He kept asking them why he had to be there when he had just left. Why he had to stay when he did not have a fever anymore. He was upset at Apurva and me for calling the on call oncologist when he spiked a fever. He kept asking the RN when he was going home, she kept avoiding the answer and he kept getting back to the question until she finally said that they needed to watch him for couple of hours but most probably he had to stay for couple days until the culture results were back.
She was a new RN, not used to Amaey's direct assault and questioning tactics. He can advocate for himself and she was quite surprised. Some of the other nurses that know him well were taking their time to explain things in detail to him. It is amazing to watch him take over when he is in the hospital. He knows the place and the people, he knows the ways and what is expected off him. He has spent 5.5 years of his 8.5 years here, I'm glad he is in charge, I'm really glad he can advocate for himself.
Today was the first time Amaey had a meltdown. He was really upset when we had to leave for the hospital this morning. He had literally just got home after 2 weeks in the hospital, he was so looking forward to spending time with Arjun on the weekend. He just hugged me and cried so much. I told him it was ok to cry, instead it was ok if he wanted to scream. It wasn't fair at all and it really sucked. We just sat in the kitchen and let him cry. Once he was quiet I asked him if he was ready to leave and he was.
He gave the doctors and nurses a real hard time too. He kept asking them why he had to be there when he had just left. Why he had to stay when he did not have a fever anymore. He was upset at Apurva and me for calling the on call oncologist when he spiked a fever. He kept asking the RN when he was going home, she kept avoiding the answer and he kept getting back to the question until she finally said that they needed to watch him for couple of hours but most probably he had to stay for couple days until the culture results were back.
She was a new RN, not used to Amaey's direct assault and questioning tactics. He can advocate for himself and she was quite surprised. Some of the other nurses that know him well were taking their time to explain things in detail to him. It is amazing to watch him take over when he is in the hospital. He knows the place and the people, he knows the ways and what is expected off him. He has spent 5.5 years of his 8.5 years here, I'm glad he is in charge, I'm really glad he can advocate for himself.
Home, hospital, home and back again
Amaey was discharged on Tuesday. He was so happy to be able to go home and do things at his own pace. Wednesday was hard to contain him. He would not sit in one place at all, he composed some wonderful tunes on the piano and as soon as Arjun was back from school the two of them were off. I haven't heard so much chatter in my house in a while. They had so much to talk about, so much to share, so much to show each other.
They also had two very special visitors. Ashish stopped by and then Flavio stayed over. We hadn't seen Flavio in almost 4 years, it was a special treat. However we were worried because we haven't allowed visitors in the house. His counts were fine so we knew it was ok but we usually try and avoid having too many people over.
Thursday, Amaey had to go back to the clinic for a check-up and they ended up staying for the whole day. His platelets had dropped to 3... that is a dangerously low number. He got a platelet and blood transfusion. Arjun had graduation and dance at school so my sister and I were with him. When we got home at 10:30pm Apurva said Amaey had a fever, this meant taking him to ER. We waited however and kept checking his temperature and it went down so we decided to wait until the morning.
This morning I brought Amaey to the day hospital. Since he had a fever and his counts have gone down very low they need to do cultures and have started antibiotics on him. He gets benadryl because he is allergic to one of the drugs and he is falling asleep now. They don't have a room for us in 1 North so I have a feeling we will be in the day hospital for a while. They are saying that we will be here for 2 days for observation, I have no idea what their real plan is. He hasn't spiked a fever since last night but the chemo he just got is very strong so they are expecting his counts to sink low even furthermore.
I already came prepared with bags so we are ready for our stay.
They also had two very special visitors. Ashish stopped by and then Flavio stayed over. We hadn't seen Flavio in almost 4 years, it was a special treat. However we were worried because we haven't allowed visitors in the house. His counts were fine so we knew it was ok but we usually try and avoid having too many people over.
Thursday, Amaey had to go back to the clinic for a check-up and they ended up staying for the whole day. His platelets had dropped to 3... that is a dangerously low number. He got a platelet and blood transfusion. Arjun had graduation and dance at school so my sister and I were with him. When we got home at 10:30pm Apurva said Amaey had a fever, this meant taking him to ER. We waited however and kept checking his temperature and it went down so we decided to wait until the morning.
This morning I brought Amaey to the day hospital. Since he had a fever and his counts have gone down very low they need to do cultures and have started antibiotics on him. He gets benadryl because he is allergic to one of the drugs and he is falling asleep now. They don't have a room for us in 1 North so I have a feeling we will be in the day hospital for a while. They are saying that we will be here for 2 days for observation, I have no idea what their real plan is. He hasn't spiked a fever since last night but the chemo he just got is very strong so they are expecting his counts to sink low even furthermore.
I already came prepared with bags so we are ready for our stay.
Monday, June 06, 2011
Talking doctor
Amaey had a visit from the talking doctor. As soon as she comes in his room and introduces herself he asks if she was writing a biography on him.... it is so amazing how this boy thinks.
She needed to meet with me first and see if I approved of her and then she was supposed to talk with Amaey. By the time she was ready to talk with him he had received his benadryl and he was loopy. I had left them alone and had gone for a walk around the courtyard. By the time I came back he was fast asleep. Later I teased Amaey that he felt asleep on his date and stood her up. He was laughing his head off. He thought I was too crazy for him.
On Tuesday, Apurva, Arjun, and I went to meet a talking doctor too. Our goal was to have Arjun talk with someone along with us so that we could understand how he felt and he could realize that we felt the same way and that he wasn't alone.
She played a card game with us and made all of us very comfortable. When we got home Amaey asked if he liked his talking doctor and Arjun being Arjun just raised his shoulders and said... I guess.
We know how hard this is for us and cannot imagine what Arjun must be thinking or going through. I'm sure he is not thinking about this all the time but when he hears us talking on the phone, or talking amongst ourselves, or discussing with doctors, I'm sure it worries him because he doesn't understand everything.
She needed to meet with me first and see if I approved of her and then she was supposed to talk with Amaey. By the time she was ready to talk with him he had received his benadryl and he was loopy. I had left them alone and had gone for a walk around the courtyard. By the time I came back he was fast asleep. Later I teased Amaey that he felt asleep on his date and stood her up. He was laughing his head off. He thought I was too crazy for him.
On Tuesday, Apurva, Arjun, and I went to meet a talking doctor too. Our goal was to have Arjun talk with someone along with us so that we could understand how he felt and he could realize that we felt the same way and that he wasn't alone.
She played a card game with us and made all of us very comfortable. When we got home Amaey asked if he liked his talking doctor and Arjun being Arjun just raised his shoulders and said... I guess.
We know how hard this is for us and cannot imagine what Arjun must be thinking or going through. I'm sure he is not thinking about this all the time but when he hears us talking on the phone, or talking amongst ourselves, or discussing with doctors, I'm sure it worries him because he doesn't understand everything.
Sunday, June 05, 2011
June 4
Either Apurva or I are always with Amaey when he is in the hospital. We have had family and friends stop by and spend time with us but one of us is always there.
Yesterday was a different day, it was Cars 2 premiere and cast and crew screening. Apurva has worked really hard on this movie and I so wanted him to be there, this was his big day. He refused to go if I did not go with him. The screening is usually a thank you for the spouse/partner. He really wanted me to be there.
My sister was supposed to stay with Amaey and Arjun was supposed to be gone for an activity and sleepover.
Pratisha nd Bharvi were supposed to come to the hospital later so that there were enough adults with Amaey.
However, Arjun woke up with a headache and sore throat and here I was already uncomfortable going away in the evening. We decided that Arjun had to stay home and rest and my sister had to stay with him. At the hospital it was a different story, they had a floater nurse and I was getting very uncomfortable with the fact that Amaey was to get chemo and she did not have all the answers for me.
Long story short, I did manage to take care of everything in the hospital and we did make it to the premiere on time and I'm glad we went because the movie was real fun. I'm really proud of Apurva. We had a lot going on while the movie was in production. It takes so many years to make these movies and when it is all done the hard work shows. It's a fast paced, action packed, racing movie about cars... now what's not to like about that.
We did not stay for the party, I came back to the hospital and stayed the night after the premiere, it almost felt like I was cinderella, whisked off in a limo in a black gown, with a handsome prince amidst the glitz of the Fox Theater and back in my hospital room before the stroke of 10pm in my flannel jammies.
It felt surreal to be there but we were really glad we were able to celebrate the occasion.
Yesterday was a different day, it was Cars 2 premiere and cast and crew screening. Apurva has worked really hard on this movie and I so wanted him to be there, this was his big day. He refused to go if I did not go with him. The screening is usually a thank you for the spouse/partner. He really wanted me to be there.
My sister was supposed to stay with Amaey and Arjun was supposed to be gone for an activity and sleepover.
Pratisha nd Bharvi were supposed to come to the hospital later so that there were enough adults with Amaey.
However, Arjun woke up with a headache and sore throat and here I was already uncomfortable going away in the evening. We decided that Arjun had to stay home and rest and my sister had to stay with him. At the hospital it was a different story, they had a floater nurse and I was getting very uncomfortable with the fact that Amaey was to get chemo and she did not have all the answers for me.
Long story short, I did manage to take care of everything in the hospital and we did make it to the premiere on time and I'm glad we went because the movie was real fun. I'm really proud of Apurva. We had a lot going on while the movie was in production. It takes so many years to make these movies and when it is all done the hard work shows. It's a fast paced, action packed, racing movie about cars... now what's not to like about that.
We did not stay for the party, I came back to the hospital and stayed the night after the premiere, it almost felt like I was cinderella, whisked off in a limo in a black gown, with a handsome prince amidst the glitz of the Fox Theater and back in my hospital room before the stroke of 10pm in my flannel jammies.
It felt surreal to be there but we were really glad we were able to celebrate the occasion.
Thursday, June 02, 2011
Family
My sister arrived last night from Florida. It was so nice to see her. She has always been the one to remember birthdays, first one to send you a card, first one to call on your anniversary. A great cook. A warm person. She was always like a mom to me when I was growing up. She got married when I was 8yrs old but I spent all my summers at her house. When she had kids, I would take care of them over summer.
She was the one that put make-up on me and dressed me up for all my school plays and dances.
I just feel so relaxed that she is here. Amaey was so happy to see her at the hospital today. When she was leaving he didn't really want her to go. And I know at home Arjun and Apurva are getting spoilt too. She is just such a giving person and she does it all so quietly, I was always amazed by her when I was growing up.
Both the boys got to spend a lot of time with her in Florida when we went for her daughters wedding. They got to see all my siblings. All 6 of us got to be there and connect. So glad Amaey could attend the wedding, meet family, go to Disneyland, visit the new Harry Potter land.
Right now Amaey is being a total techie geek. He is is on skype with Christopher and they are playing Lego Universe together. It's really cute, he is propped up on his bed and lost in his world.
She was the one that put make-up on me and dressed me up for all my school plays and dances.
I just feel so relaxed that she is here. Amaey was so happy to see her at the hospital today. When she was leaving he didn't really want her to go. And I know at home Arjun and Apurva are getting spoilt too. She is just such a giving person and she does it all so quietly, I was always amazed by her when I was growing up.
Both the boys got to spend a lot of time with her in Florida when we went for her daughters wedding. They got to see all my siblings. All 6 of us got to be there and connect. So glad Amaey could attend the wedding, meet family, go to Disneyland, visit the new Harry Potter land.
Right now Amaey is being a total techie geek. He is is on skype with Christopher and they are playing Lego Universe together. It's really cute, he is propped up on his bed and lost in his world.
Tuesday, May 31, 2011
May 30
Today is a better day. It looks bright and sunny outside, I will wake Amaey up so that he can have his breakfast and then make the most of the sun. We will go by the fountain and do a project and wait for Apurva and Arjun.
Apurva and Arjun brought a wonderful lunch and we sat outside by the fountain and ate beans on toast, salad, chips. Now Amaey is tired so he is reading in his bed. Arjun is doing his homework with Apurva and then we will change guards, Apurva will stay and I will leave to go home with Arjun.
In the evening, Arjun and I walked down to Davina's house. I am trying to take a walk with Arjun after I come home from the hospital. I have all these expectations that we will talk, and he will tell me what is going on in his life and I will feel like I can catch-up with him but I now understand that he is growing up. He likes to talk at his pace and in his own way. Just because I'm home and now I'm focusing on him does not really mean he looks at it that way too. I was so frustrated after our last walk and I got really upset at him for not wanting to talk. Yesterday I decided to not ask him anything, instead I just started doing my fast paced walk and challenged him to keep up with me. He was playing on his iTouch so he kept slowing down and I kept getting ahead of him, and then he would run and catch-up. We did that all the way back to the house and when we got home he said he had a good time.
I felt so good. I guess, for him going for a walk does not mean he has the need to talk. All he wants to do or is looking forward to is to be with me. Maybe that is enough. I should learn to take his cue and be happy with that.
Apurva and Arjun brought a wonderful lunch and we sat outside by the fountain and ate beans on toast, salad, chips. Now Amaey is tired so he is reading in his bed. Arjun is doing his homework with Apurva and then we will change guards, Apurva will stay and I will leave to go home with Arjun.
In the evening, Arjun and I walked down to Davina's house. I am trying to take a walk with Arjun after I come home from the hospital. I have all these expectations that we will talk, and he will tell me what is going on in his life and I will feel like I can catch-up with him but I now understand that he is growing up. He likes to talk at his pace and in his own way. Just because I'm home and now I'm focusing on him does not really mean he looks at it that way too. I was so frustrated after our last walk and I got really upset at him for not wanting to talk. Yesterday I decided to not ask him anything, instead I just started doing my fast paced walk and challenged him to keep up with me. He was playing on his iTouch so he kept slowing down and I kept getting ahead of him, and then he would run and catch-up. We did that all the way back to the house and when we got home he said he had a good time.
I felt so good. I guess, for him going for a walk does not mean he has the need to talk. All he wants to do or is looking forward to is to be with me. Maybe that is enough. I should learn to take his cue and be happy with that.
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