Saturday night

Amaey was homesick in the afternoon (2.5 out of 5 days are down). He was glump and did not feel like doing anything. He had to finish up his homework, maybe that made him feel more bored.

So I took his homework away and brought a sand art project for him to do. He was not cooperating at first. He found it boring and it did not really look that cool. When I peeled the first layer of paper off and asked Amaey to pour all the sand and spread it and mess it up he sat upright. Now we were talking.

The first layer was dark blue and it was half of the design so it really looked very impressive. He was so happy to see the design transform in front of his eyes that he wanted more. Little by little we peeled each an every layers off and when he filled in the white clouds last he was beaming (he picked his own colors).

He wanted to go out and show it to the nurses. So we took his pole and I dressed up in my gown and shoe coverings (we are in the stem cell unit so anytime an adult steps out of the room they need to wear the protective garb) and walked to the nurse station. H was so happy showing his design off and then he started floor skating in his socks. He danced up and down the long corridor but the tubing wouldn't let him go to far. So finally he got tired and we went back in the room.

They have free on demand movies for families and we picked Fly me to the moon. We had dinner and watched the movie. (we always do dinner and movie on Saturdays at home so we had to follow the tradition. Around 10:30 the nurse came to unhook him from the ivy just for couple of hours. Oh Boy! you should have seen Amaey, I'm FREE!!! He jumped out of his bed and ran outside the room. Now there was no stopping the dance monster. All the other nurses had heard about his performance earlier so they all gathered up and Amaey gave quite a performance. Then we walked outside the stem cell area and danced all the corridors and finally settled near the family lounge and played with a contraption. I do not know what it is called but it was cool. We played for a long time and finally went back to our room since Amaey was tired.

He was so happy when he was falling asleep. The party animal is still sleeping.

Arjun paid a visit

On Friday night we did our usual parental/child swap.

Apurva brought Arjun over and since Amaey was not in isolation anymore he got to go out to the entrance and see his brother. They were so cute.

Amaey has been asking for Arjun for many days now, however now that Arjun was there all he wanted was to get away from his hugs.

I know when I drove home with Arjun he was truly happy to have seen Amaey. On Saturday morning when I went to do the swap again Arjun was in the car with me and he said, ma when Amaey goes to the hospital I like it for a few days because I get to be by myself but when he has to stay for so many days I start missing him. I loved that honesty. I truly envied his honesty.

5 more days

Yup the verdict is 5 more days or a rise in his levels.

We are bummed, feeling claustrophobic at the moment in this room. I get to go home and take a break and come back again, Amaey doesn't. I can totally understand how he feels. All he keeps saying is he wants Arjun.

This morning he was picking a fight with me and I said Amaey I think the two of us need a break from each other and he said yes I need Arjun to fight with. I thought that was so cute. He loves his brother but if someone asks him about his brother all he says is, he is always mean to me and fights with me... while Amaey instigates most of that.

Now all we can hope is that his WBC goes up and we can go home.

Friday

Yesterday Amaey's CBC came back and he was neutropenic so they started his antibiotics right away. Now I have no idea what the plan is and how long we will be in the hospital.

The good news is, he had no fever since 7:30pm yesterday.

I know Amaey wanted to celebrate Hanukah with his Gabbu. Not sure if we will be home for that. It will be great if we can go home tonight. It is nice to be home with the family on the weekend. It helps to unwind and then get ready for the week.

Borderline neutropenic ughhhh

Today has been a really busy day for us.

As per protocol he was supposed to be discharged after getting his last chemo at noon so after watching him for couple of hours we would have gone home.

But they really want to watch him overnight. Give him his last pre-meds cocktail at 6pm, see how his body would react once he has no medicines inside him and if a fever does not spike, get a chest x-ray, start his blood transfusion and then discharge us.

Once Amaey heard the doctor say that he will have to stay tonight he completely broke down. He cried so much that I suddenly realized that we have had it really easy up until now. If it weren't for his attitude, his smile, his will to keep going we would have gone insane by now. If Amaey had taken his treatment the way he has over the past three days we would have been completely unbearable people to be around. If we are calm and composed it is all because of Amaey. If we can breath and not be at each others throats it is because of Amaey.

This hospital stay has driven him off the wall. It was too soon. He was in the hospital just last week and now he was supposed to be here for 3 days but it might be longer. He just spiked a fever again and we were hoping he wouldn't. If his ANC is 500 or below then he is officially neutropenic which means they will start him on antibiotics which means we are here for 3 more days ugghhh.

I don't know how I will handle him. Usually I can but this time around with the steroids and benadryl creating havoc in his brain I can't reason with him, I can't entertain him, I can't even entice him to watch Bobby Flay on Food Network. I wish they allowed kids to visit him. Seeing Arjun would really help him at this point.

One thing at a time. I'm going to pray hard that he does not spike another fever tonight and he is not neutropenic... then we will get to go home. IF not at least the meds will have worn out of his system and he will smile and see the brighter side of life.

Turtle collection

Amaey's turtle collection is growing steadily.

He bought this green tortoise in Las Vegas and named it Tortellini how cool a name is that for a green tortoise.

One of the play room people had stopped by the room and saw his Tortellini and rewarded Amaey for the ingenious name with yet another tortoise... He named it Ferrari yesterday because he was watching F1 racing with Apurva but today he renamed it Spotty.

Apurva is not too happy about that. I have a feeling the two will go head-to-head about this re-naming once Amaey goes home.

Thursday

Amaey managed to pull it through last night. He had fever and tylenol helped but the fever came right back and kept increasing. However he managed to get the chemo done Yeah!

He is still slow and his ANC is 560 and Hemoglobin is going down so they definitely want to keep him tonight and watch him. Both Apurva and I are more comfortable with that plan.

At noon he will get his Peg, which are two simultaneous shots on the thigh, and after 2pm he will get a transfusion.

After that it is wait and watch.

Amaey really wants to go home so we are not telling him that he has to stay one more night.

In the hospital

On Friday we went in for blood test. Amaey's platelets were low but were on the rise from earlier in the week so they asked us to come in on Monday for another set of CBC and chemistry and possible pre-medication for admission on Tuesday. So on Monday we went to the clinic for Amaey's bloodwork. Everything looked good. His ANC was up at 1400. Based on that they decided to move forward with his chemo on Tuesday. This time around the plan is to pre-medicate him with a cocktail of drugs. We started the pre-medication on Monday at noon.

On Tuesday they called us at 11 to inform us that they have a bed and we should check-in (sounds like a hotel huh). We got there around 12:45pm. Amaey wanted me to make his lunch and dinner so it took me a little while to get packed and ready to go.

Once we got to the hospital and checked us in they told us that they will not start his chemo until 6pm i.e. after 1 more dose of pre-medication. So Amaey and I went to the playroom and had some fun until 4pm. We came down to the room and around 4:30 Mrs G came over. Amaey was really happy to see her. He was a little looney at this point because of all the benadryl he had taken.

He wanted me to pick-up dinner from CPK so I left the tutor and pupil and went to the Stanford mall to pick-up his mac and cheese.

After his tutoring we had dinner and watched several episodes of chopped and you think you can dance and called it a night.

Around 8am on Wednesday he spiked a fever of 102. This time around they were more prepared. The nurse took his blood culture right away and gave him tylenol. When I left the hospital at 11am his fever was subsiding and he was happily playing on Apurva's computer.

Throughout the day I have been checking in and his fever seems to subside with tylenol and comes right back in 4 hours. So far it is all under control. Our hope is that it stays this way. From his last blood test this morning it was determined that his ANC is low but not neutropenic and his hemoglobin is coming down so I have a feeling that they will transfuse him tonight or first thing tomorrow morning.

I sincerely hope the night goes well and without any major changes.

All negative

All the tests that they did on Amaey to figure out why he spiked a fever came negative. So he did not have a viral or bacterial infection.

After consulting with all of doctors in their team they found out that one of the doctors had a similar case many years ago where the child spiked a high fever after getting this chemo and had a low blood pressure as well.

So they are going to tread with caution and give Amaey pre-meds before administering this chemo. They think Amaey has an allergy to the meds.

We are relieved in a way to know that it wasn't any infection. Because we have been very careful with washing hands having people over letting Amaey go anywhere. We just couldn't figure out where he would have caught the infection. Then we thought we should have Arjun stop swimming maybe Arjun is bringing the germs.

It finally hit me

Last week I could not shake off my anger, resentment and feeling of hopelessness. I rarely feel this way. If I do I can make myself get over it. But I couldn't. Also being in the hospital one parent at a time and being available for one child at a time meant Apurva and I never had a chance to talk.

Getting mad at Apurva, fumingly mad. Being upset the entire week. I realized that it had nothing to do with Apurva... I realized that I was finally mad at the relapse. After 8 months of being back in the treatment it finally weighed me down. The long hospital stays, balancing Arjun and life and work, the roller coaster of emotions, the constantly watching out and looking for signs in Amaey's health, all of this finally hit me hard.

Cancer sucks. This relapse sucks. Watching Amaey go through all of this again sucks. What am I going to do about it? Whatever it takes. keep doing what we have been doing because as a family we are a good team and we will keep at it and once in a while we will complain and scream and vent and be thankful for whatever we can.

Home Free

The doctors just came in and told us that Amaey's counts are a little low and his platelets are borderline so they are worried that if they start him on chemo again his body might not be ready for it.

So... they are letting us go home. They feel that too much time has passed between the two doses so they would rather make this round a wash and then have us come back after Amaey's body has recovered fully and start this round again.

All the tests and cultures they have done over the 6 days came back negative so they think that the fever was due to the chemo however they are still perplexed about the low blood pressure.

So we are waiting for them to do all the paperwork and de-access Amaey. We will pack up and go home- for now. It's good time because just early today Amaey had a melt down. He felt frustrated and wanted out. I guess they heard him loud and clear.

Free for a day

Look who is sitting unattached...

Amaey got to be completely free of ivy and monitors. He had no fever the entire day so that doctors wanted to just watch him before starting his chemo again.

Arjun and I bought a few lego gifts and Amaey already built his power

miners truck.

Tomorrow they will give him his 2 remaining doses of Cyterabine and on Sunday he will get his Peg and if he does not get a fever we will get to go home on Sunday.

So mad

I have been brewing anger for a few days and in the hospital today I thought I would explode.

When the doctors told us about Amaey's hospital stay over thanksgiving I had a natural outburst, I did not want us to be in the hospital over this long weekend. i just didn't. Also, I had tickets to Florida for my niece's engagement.

The doctor and Apurva both insisted that we should stick to protocol and if Amaey is doing well we should administer his chemo which was only 2.5 days in the hospital so technically he would be home by Wednesday and I could still fly on Thursday.

I'm mad at Apurva and the doctor for ruining a perfectly calm weekend. Amaey was so looking forward to cooking and celebrating and it would have been a nice catch-up time for the boys.

I was so looking forward to be attending my niece's engagement. I will be honest, I was looking forward to a break. Sleeping in the plane, alone. Just disconnecting and recharging.

I can understand that protocol is important but I wish I was more adamant. I'm so mad at myself too. I wish I had put my foot down a little harder and made a bigger stink. I think if Amaey had had this 1 week off he would have had a chance to relax. He was so upset about being admitted too. On Monday he kept hoping his counts were low so that they would not admit him. After they gave us the green light to get admitted I still had my doubts, he looked slow- that's OK, he has a runny nose- that's Ok. Are you sure he looks Ok for this chemo that really knocks him down?

One part of me wants to understand where Apurva and the doctor were coming from. Let's stay on target. Let's make sure we don't mess the treatment up. Let's not cut any corners and lets dot all the i's and cross all the t's. But on the other hand... I wonder if we could have avoided this stress and pain.

Amaey asked me why I was letting him go through chemo when I believed so much in natural treatments. I had to look straight in his eyes and tell him that I don't have a magic pill. All the natural stuff that I'm doing is just to help him feel better but I do not really have a solution up my sleeve, chemo is the only alternative to what he has.

I felt really sad that I couldn't give him any false hopes.

Moved down to 1 North

Apurva helped move Amaey out of ICU and down to the Oncology unit yesterday around 1pm.

When I came in at 3:30 his heart rate was between 80-90 and had no fever since 10am when they gave him tylenol. He looked much better.

He kept complaining of pains in his abdomen and it was hard for him to take a deep breathe.

After Apurva left, the two of us settled down but both of us were in a funk and not in a mood to do much. Finally around 7pm he tried to eat dinner but the smell of the food made him gag. So I did not force him. He changed and had some pediasure and the two of sat and watched The throwdown on Food Network and then MythBusters and called it a night around 10pm.

He wanted me to sleep with him in his bed until he fell asleep and that really felt good to me. That meant he was feeling better and was aware of his environment.

Since he is connected to the monitor the night was hard because every time he would move the monitor would beep. His oxygen band connected to his finger kept coming off so the monitor was pretty unhappy. Finally at 6am the nurse put a more stable band on his finger and the two of us finally slept until 8am.

This morning was quite a wonderful treat. Amaey woke up a happy bunny. He was his usually chatterbox and all smiles. He brushed, changed and ate some cheerios. Yipee!

Amaey in ICU

The fever didn't let down yesterday. Once it reached 105.4 the nurse was worried. His heart rate jumped to 148-150. They hooked him up to all the machines and kept a constant eye on him. Suddenly he started shivering.

That is when the nurse came in to tell me that they would like to move Amaey to LPCH and an ambulance was on it's way. I was really mad. When the doctor called me from LPCH to get consent I yelled at him, why did you send us to El Camino if you could not handle such emergencies. He had a fever last time too...

It took 2 hours for the transport to come to us. Those 2 hours felt really long because Amaey kept going in and out of deep drowsiness. Different doctors kept coming in to make sure he was still sane and wasn't in some state of shock due to the high fevers and chills.

Finally around 12:15 the crew walked in, asked lots of questions about Amaey's current state, past history etc. As they were talking with me outside the room Apurva walked in. I could see the shock on his face to see all this fuss outside Amaey's room. They put him on their stretcher and I insisted to stay in the ambulance with him and Apurva brought all the luggage and drove to LPCH on his own.

We took few pictures in the ambulance, Amaey wanted to know what the drivers seat looked like, we couldn't get a good shot but we tried. They were trying to constantly chat with him I wasn't sure why but I think they wanted to make sure he was aware of what was going on. I think that was their way of keeping an eye on his condition. At some point, while Amaey was talking about science and all his favorite things in life we noticed that he was having a hard time breathing and couldn't talk without feeling tired, they decided to give him an oxygen mask. Luckily the nurse had warned me of all of this so I wasn't panicking. On our final lap towards the hospital they decided that Amaey needed to be in ICU instead of the Oncology unit. His breathing was getting erratic and his cough was sounding wet, they were worried that the extra fluid they were giving him might have caused a pulmonary edema. They did not want to take any chances if there was fluid in his lungs.

At this point I was in De-Ja-Vu mode. Thanksgiving, a glass ICU room, doctors, fellows, nurses, coming in the room and going out, Beeps everywhere, Amaey is listless and completely quiet. Doctor after doctor examining him and talking with us. Information is exchanged between everyone and finally Dr Wei shows up, looking 4 years older and then I realize it is all happening all over again. Yes we were given masks to wear as well. I made my statement I had been waiting to make as soon as I saw Dr Wei and Jen Moon, I HATE THANKSGIVING. I absolutely hate it. I wish I could skip that week and erase it out of our calendar for life.

Around 3:30pm after Amaey was given several antibiotics, a chest xray and tylenol, his heart rate came down from 167 to 140 and his temperature was around 103. I crashed on his bed.

I woke up to find an Amaey sitting up and looking a little like himself. Which was really a treat. I changed him and Apurva went to get some food for him and a coffee and then around 6:15 pm I left the hospital once Amaey seemed stable.

At home Arjun had 99.2 fever but he looked and felt great. We lit the fire in the fireplace and sat and chatted for a while with Aditi's mom Kirtiben, who had come to take care of Arjun.

Later around 10pm we got a call from Aditi... Ashray proposed to her with a ring in the mint box!!! What... you are engaged!! Oh I have to tell Amaey it will brighten his night. And when I called and gave him the news, Apurva said that he was wearing the biggest smile possible.

High fevers

Apurva called me yesterday and told me that Arjun had fever. So he has taken the day off today. He will come to the hospital later in the afternoon and we will change guards and I will go home and stay with Arjun.

Over here in the hospital Amaey had high fever last night and the fever has continued this morning too. This chemo completely knocked him out last time and we were hoping that it wouldn't be as bad this time but that's not the case.

His hemoglobin is low so they are considering a transfusion tonight. He has a runny nose and has started coughing so now they have put him in isolation. He cannot get out of his room. 

Yesterday the two of us went down to the new atrium by the cafe and played with his new lego racer car. I wheeled him down with his ivy pole. We had such a wonderful time playing for almost an hour. Then he needed to go back to his room because Mrs G was to pay a visit. The two of them worked together for an hour and a half. Amaey was getting really tired by the time Mrs G left. By 7pm he had changed and was fast asleep. 

Today our goal is to keep him entertained and happy. 

Hospital Stay

4 years ago on Nov 22 2005 Amaey was diagnosed with ALL. 

It felt really strange to be back in the hospital today still fighting the ALL.

We checked in the new El Camino hospital at 1pm. This round he will get Cyterabine chemo 4 times over the next two days. On the third day he will get Peg which are two shots on his thighs. 

This chemo combo usually gives him high fevers. He is already feeling tired and complaining of a headache. We do hope to go home before Thanksgiving.

My parents

My parents left so this time around the juggling has already begun.

Yesterday, I met a mom in the clinic who has a 7yr old daughter going through treatment and 3 more kids at home. She looked so tired. I asked her how she managed without any extra help... I guess we all manage if we have to.

I must say that my parents came at the right time. They arrived in Summer, and I did not realize how tired I was. I took a nap every day for the first month. I felt like I could keep sleeping forever. Then they left for 2 months to visit my brother and sister. During that time I was already recharged.

When they came back to us in September the longer hospital stays began and my teaching job became busier. Amaey got really sick and we decided to home school him. If it weren't for my parents help making all those transitions while keeping my job and managing the last minute dashes to the hospital would have been really hard.

Hospital Today

We are in the hospital for (non-stay) chemo today.

Apurva and I were worried that Amaey will not make counts. He had dark circles under his eyes and we thought he might need blood or platelet transfusion. But we were proved wrong and that was good.

We are in a room now and after giving him some zofran they will start his chemo. Hopefully we will go home in 3 hrs.

Amaey is busy watching the food network. The Barefoot Contessa is cooking up some classics.

Amaey wants to cook a meal for Thanksgiving. While I'm driving he takes my iphone. I think he is playing games but today I realized he surfs for recipes. He is so cute.

2 of 8 Methotrexate

We are in the hospital.

This is 2nd of 8 hospital stays for this round of treatment. We got to the hospital around 12:30pm. Once we settled down they hooked him up and started hydrating him. At 8pm they will start his chemo. He gets this chemo for 24hrs. After that their goal is to flush the chemo out of his body. They keep hydrating him until the chemo is at 0.1 level. This process can take 3-4 days. So we will definitely be here until Thursday.

We are at the El Camino Hospital so it is a bit farther away from home. At the moment they do not allow anyone under the age of 19 so Arjun or his friends cannot stop by to visit him.

We have officially started his home schooling. The school district sends a tutor for 5hrs a week. We are really blessed to have his teacher from school as his home school teacher. She is here at the hospital and working with Amaey. I just heard him pick on his teachers handwriting. Only Amaey would do that, tell as it is...

We watched Jurassic Park at night, it was really fun.

Day 2 was fine. 

The hospital is moving to a new location this weekend so the entire floor was deserted. They had already packed up the play room, no books, and not much else to do. They wheeled the gamecube to his room. Which helped distract him now and then. around 1pm Calvin the hospitals teacher dropped by and we all walked Amey to the school which is on the same floor. I took my computer there and worked. The two of them finished all the homework and spent almost an hour playing math games on the computer. By the time we went back to the room it was 4. Amaey was really happy. The two of us read, played sequence (I lost all the games.) Apurva came to the hospital around 8:30. After all the change of duty hand offs I went home.

Day 3, the two boys spent the day together. 

Apurva took the day off since it was Veterans day and Arjun was home. Apurva said that Amaey had a busy day between Mrs G tutoring him and Renu-Sunil stopping by (with his penne pasta). This time around Amaey did not want to look at the hospital food. Even the smell grossed him out. We took all his meals from home. He asked for milkshake, quesedilla, linguine in red sauce, corn, sliced apple, different types of snacks. It was a great idea because this is the first time he ate well. 

At night they watched Pink Panther and around 10:30pm I got a call from them saying he was going to come back home. This was real good news because he never comes home within 3 days. This chemo always takes 4-5 days.

It was so wonderful to see him all happy. It was wonderful to have everyone back home.

Friday CBC

We went in on Friday for his routine bloodwork. 

As soon as we were in the car driving to pick-up Arjun from school I got a call that they needed him back, his blood was low and he needed a transfusion. Since kids are not allowed in the hospital we first had to go home and drop Arjun and then we drove back to the hospital. They had the blood ready for him and gave it to him over 3hrs. He did fine with the transfusion. We got back home at 7:30pm. 

IT

Amaey had his IT today (Intrathecal). He has to fast for it and take a bath with anti-bacterial soap. He is given anesthesia for this procedure. They take him to the operating room and put the sleeping medicine in a tube which comes out of a mask. He usually likes to count something while he falls asleep. He starts planning what he will do in the procedure room while we are driving to the hospital. He will also plan the flavor of his sleeping medicine.

Will it be bubble gum or strawberry. Hmmm how about grape today.

Today he couldn't decide between atoms and planets. So finally he did say the planets. By the time he said his 5th planet he was fast asleep and then they asked me to leave the room.

After an hour when he was in the recovery room they called me. He was still fast asleep when I went to him. The minute he heard my voice he jumped and tried to get up but he was still very drowsy from the medicine. 

It was 12:30pm and he was really hungry by then. All he could think of was to get out of there and get home to his leftover chinese food. Which is exactly what we did.

He was really tired after e got home and took a long nap. He was quite refreshed after and has had a wonderful day.

Home School

We have decided to home school Amaey until the end of winter. The H1N1 is rampant and his immunity is going to be compromised with this intense round of treatment. We haven't ironed out all the details yet but as a first step we have talked with the school district so we will take one step at a time. 

When we told Amaey about our decision he had 1 condition, provided we give him 2 playdates a week with his best buddies.

So now I will add, amaey's social planner, in my job title as well.

I don't think we can avoid germs and life from happening around him but we can definitely limit the exposure and help him stay healthy through the worst months of the season.

Amaey is home

We got the green light to bring Amaey home today. His counts are up. Ofcourse if you see him today you couldn't tell that this kid went through so much suffering. Kids are just amazing. I do not know how they do this. 

Arjun does not have fever either so it was really nice to come back home and have a happy healthy family to be with.

I must say that we haven't quite figured the coming back home day very well. We somehow have the energy while we are in the hospital but when we come home Apurva and I suddenly feel so tired and then we have Arjun who wants all the attention because he hasn't seen the family in a while and Amaey wants to be the king of the house because he is the one coming home and by the end of the day we just feel so incapable of managing everyones expectations.

Well, I can't think right now but this back home day definitely needs a little fine tuning.

Guess who ate today

I went home last night to find a really slow Arjun. He had been waiting for me and fell asleep on the sofa in the living room. He seemed warm to me at night so when he woke up in the morning I took his temperature and sure enough he had fever. Poor baby was feeling really sick today. I stayed with him the whole day. His fever kept coming and going. He has been quite a trooper and he ate some dinner before I left for the hospital.

While at the hospital Amaey's fever had not returned so at least that was a relief.

Apurva is home with Arjun now and Amaey and I are in the hospital watching Looney Tunes. Amaey had a food request so I made him corn soup and cheese quesedilla and apple cider bread. It was wonderful to watch him enjoy his meal.

We are still waiting on Amaey's culture but we do know that his flu swab and chest xray were negative. He is still neutropenic so they will not let us go home until his numbers come up to a safe place. Right now with Arjun sick we would rather have Amaey in the hospital so that both get to recover and not catch each others germs.

That's All Folks!

Family and Friends

We know that everyone is concerned about Amaey and our family. Lot of friends and family have called to ask how they can help. We just want to say that we are touched by your love and support. Right now we have my parents so support, food and Arjun are taken care off. Other than that there is not much to do. Apurva or I prefer to be by Amaey's side when he is in the hospital. If he is not in the isolation room as he is this time, we love to have friends stop by. Amaey likes company too.

Once my parents leave we will reach out for help. Until then just send good positive thoughts our way. Amaey is a special child and he has a lot to offer to this world. We want to see him grow up and put this all behind him. 

No fever

Apurva is in the hospital with Amaey today. Amaey picked up the phone and talked with me. Wow, he sounded much better. Apurva said he ate a little which is wonderful compared to yesterday. He did not get a fever last night and we hope that it stays that way.

He is getting 3 kinds of antibiotics and to be safe they are also giving him flu medication. One of the antibiotics gave him an allergy so he also gets benadryl.

When I took him in on Thursday he was so weak. He did not move for the entire day and slept the whole of Friday. I could not motivate him to move, smile or do anything. It was really sad to watch him feel so bad. That is not Amaey, he will always make an effort but when he is so low it means he cannot take it anymore. Finally around 7pm I did force him to watch Project Runway with me and then he asked to change to his favorite Food Network. Slyly my plan worked and I was happy to get him out of his funk. When I left the hospital he was eating his banana and dhokla that Ba had sent for him from home. 

Amaey in the hospital

I had stopped contributing to the blog because, a) I felt tired writing 

about what we are going through b) things are as per protocol 

c) life is just plain busy. However, I have a lot of friends calling and 

emailing and then family all around the world wonder about him.

The last 2 weeks have been particularly hard for him. He started 

his delayed intensification on Oct 12. The 3 days in the hospital 

with chemo completely knocked him down this time. He had high 

fever the entire time and came home with it as well. After a few 

days of rest he was feeling better yet not his best. On 19th we went 

in for his routine blood test and later that day they told us Amaey 

was neutropenic and needed a transfusion. So on 20th I took him 

for that. He usually perks up after a transfusion but this time around 

he did not. He was still dragging his feet around the house and not 

really eating anything. On 22nd he threw up in the shower, I got 

worried so I emailed his doctors. I wanted them to take a look at 

him when i brought him in for his routine blood test.

They decided to admit him based on the symptoms. He had a high 

fever too so now he is in for at least 3 days. They are trying to rule 

out the flu or H1N1 or any other infections. I have never seen Amaey 

so sad and that really breaks my heart. He is such an upbeat child, 

looks at the positive side and takes everything in his stride. Right now 

he is being pumped with so much more medication. I don't know how 

a little body can take all this toxicity. 

I believe in silver lining but I really do not see one with all of this pain 

and suffering.

Uncle Jed’s Once-Daily Power Green Shake

Raj sent this recipe to me  couple months ago. I try and make this shake as often as possible. Amaey is not a fan of it so it makes it a little hard to make it everyday. However, everyone in the family drinks it now and that is a really good thing. Amaey watches everyone gulp it down so he cannot really complain.

Recipe makes 2 full glasses of Power Green Shake

Handful of Raw Spinach leaves with its stems cut off

Half a handful (a cat’s mouthful) of Fresh Wheatgrass

One Fuji Apple cored and sliced (leave skin on)

One Cup of Filtered Water

Quarter Cup of Fresh Apple Juice

One full scoop (2 tablespoons) of Vanilla flavored Whey Protein Powder (with no

dairy or sugar)

One Tablespoon of Greens Powder (with MSM)

Half an Avocado

Put the above ingredients in a Blender and liquefy it. The more liquefied the better. I sieve half of the shake so that it goes down Amaey's throat easy. He tends to gag easily. Sometimes I also add more apple juice for him.

Pooja's juice

A mom contacted my via one of the blogs. Her daughter has ALL as well.

She sent me this recipe for a fresh juice-

- carrots

- brocolli

- spinach

- apple

- orange

- fresh turmeric

- kiwi

- celery

- red grapes

Add nothing to the juice, just all the fruits and veggies.

I think this sounds wonderful. Turmeric is a natural antiseptic so I like that. I will definitely add it to our daily regimen.

Day 3 in the hospital

Day 1 goes fast because we check-in and we are fresh. He can still move around since he is not hooked up with an ivy right away. For the first 6 hours he just gets hydration and after that is over they start his chemo.

Day 2 is relatively fun. Chemo is still going through the body. It hasn't suppressed his appetite just yet. The Wii is rolled into the room, there are TV shows to catch-up on. Games to play.

Day 3, is another story. He starts asking to go home. When are we leaving. What are we doing today. I have done everything. I'm bored. He is getting a bit stir crazy. He also slows down by day 3. The chemo has made it's way through the entire body, his appetite is diminishing.

Well, we had a fun time today- 

- Amaey finished up Kumon first so that he could play the entire day

- Rita picked-up Arjun from school and came over with her kids and yummy lunch

- Sid, Arjun, and Amaey played Wii for a while after eating lunch. It was hard for them to leave

- Arjun made some wonderful creations with Legos

- After all that excitement a nap was overdue. 

- We played perfection and got greedy and beat the timer by playing for 30sec and 20 sec instead of 60 sec 

It was a fun day after all.

Hospital week

This is Amaey's hospital week. 

This is the first hospital stay where we do not have any family back-up. My sister flew in for the first stay. My parents flew-in for the next 3 stays. This week Arjun is in camp only until noon so I was scrambling to find a way to balance Arjun's life while running to the hospital to admit Amaey and get him started on his chemo.

We were trying to prepone his hospital stay so that he is free on his b'day which is next week. Thus the last minute scramble of events.

So far the hospital stay is smooth. Amaey and I made bookmarks yesterday. Today we will do some foam art. And play blokus and math go fish. I'm trying to find 2 art activities to intersperse with his Wii, TV, kumon, and computer time.  

This time around he is at a different hospital a little farther south so his friends cannot come and visit him either. However today we have a surprise planned for him. After I pick-up Arjun from camp we will go to CPK and get Amaey his favorite food and take it to the hospital. We will all eat at the hospital and Arjun will get to spend time with Amaey which should be fun.

Amaey's new treatment plan

The treatment plan with Amaey's relapse is pretty intense.

He has to undergo chemo in the hospital so every 3 weeks he is admitted in the hospital for 3-5 days. He also underwent 12 consecutive days of radiation.

He has 1 more round of hospital stay for this round. Then for the next 4 weeks he is off the hook. He will get his chemo as outpatient. But starting end of September he will undergo an intense phase of treatment with hospital stays again for 6 cycles which will take us until March of 2010. 

This is all truly unconceivable. 

We are taking each day at a time. It is really hard to think of after the treatment at this point. We are scared to think about that. A relapse can shake the ground you are standing on. All those positive beliefs, the silver lining... everything evaporates in thin air.

Waiting room

You are sitting, waiting, in a big waiting room

waiting for them to call your child in

Or, waiting for your child to be out of a procedure

You look around at shuffling faces, lost in their thoughts

Some sitting uncomfortably, fidgeting with their iPhones, getting up everytime a staff looks at them

I want to go and make a conversation

But what do I say?

What do I ask?

What can I offer in terms of solace?

What do I share from my experience?

This is one socially awkward place where familiarity doesn't pay, experience doesn't bode well, words of encouragement and hope feel pretentious

How do I strike a conversation?

Do I want to let them know that I have been there and done that just to find out that their pain is greater than mine?

Do I really want to know?

Do they really want to hear what I have to say?

I think I will just stay put, and let them figure it out themselves.

At the clinic

A child walks in -

hunched up, dragging her feet.

Parent follows, overburdened with bags.

A pillar of strength, both- in their own right,

join the families, waiting, waiting for their turn

for their turn to join the elite group of strength & perseverance.

To add one more visit, 

one more poke, one more check-up,

to their long list of achievements.

They walk around the clinic, some like ninjas,

some on their wheelchairs, some wheeled in their radio flyers, 

some kicking & screaming and dragging their feet - 

mad at their caregivers, mad at their families,

mad at everything that lays eyes and hands on them.

A child walks in, sometimes it's an in and out, or a few hours. 

Sometimes it might take an entire day, or more.

January is gone and June is here

It's been 5 months since I have returned to the blog and I must say these were the busiest 5 months I have had in a long time. Busiest, life changing and heartbreaking.

After enjoying a month of cancer free Amaey we got the news we were really not hoping for... "a relapse". On March 23 Amaey had a relapse of ALL. We started treatment right away. Now he is on an intense 2 year plan. 3.5 + 2 = 5.5 years.

Time to celebrate. Come one. Come all!

January 31, was our party for Amaey's end of treatment.
We asked Amaey if he had any special requests for the party, if he would like a theme, a clown, a mad science lady.... He said, I want lots of food, music, and all my friends.
So we did exactly as we were instructed. 
It was a simple, fun party with a small band, hot quesedillas, sangria, and many more things to eat. A beautiful cake from Masae Bakery in Berkley. Beads to make take home gifts. Lots of love and laughter.

End of Treatment!!

January 26 2009, Amaey is finally done with his treatment for ALL

!! Arjun did not go to school, Apurva and I took the day off and the 4 of us went to the hospital for Amaey's last treatment. We took pictures of everything Amaey did... I wanted to document it all.
Later we went to the Sharma house to celebrate with Izzy and then to Sino for a celebratory dinner. Finally around 9pm I took Amaey to the Moussa residence. From there I took Gabriel and Amaey for ice-cream. This was a plan concocted by Amaey. The last day of treatment was carefully choreographed by Amaey  and we had to make sure we did everything. Frankly, we would do anything to make this all happen. This was a special day for Amaey and he deserved to get what he wanted.

Last Chemo

Jan 20 was a historic day in the life of America. We swore in the first African American President. 

Jan 20 was also a historic day in the Shah household, it was Amaey's last chemo day. We are getting there for sure. 1 more week and on Jan 26 after his procedure they will stop all his meds.

On another note, today Kids and Art got nominated, along with several other individuals, to participate in the Man and Women of the Year campaign organized by the Leukemia Lymphoma Society. 

Happy New year!

Might sound music to your ears but it is true. we are finally in the home stretch.

Amaey's 3.5 year treatment will be over soon.

Here is to Hope, Good Health and New Beginnings. May this year bring the needed stability.

These are my words for whoever is up there with a strange sense of humor-- Don't look at me, don't stop by to check on me. You can simply bypass me and I'm sure we will be fine. I don't want a wow, a bang, a breakthrough. I just want to be me. I just want to enjoy my kids as normal healthy kids. I just want to be normal and finally rest my guards.

Have a wonderful 2009!!

Amaey is 6

We celebrated Amaey's 6th b'day. I couldn't get over the fact that he has spent half his life, exactly half his life in treatment. Crazy huh!
We celebrated it in small bits. Few days before his b'day we surprised him by inviting his special buddy Gabriel and Christopher, Elias, Andrew and of course Arjun to the Lego store. After being totally surprised and thrilled to see all his favorite people at his favorite store they checked out all the new clone wars lego sets, checked out every inch of the store, played with some of the swords, built some lego contraptions and once they were hungry we walked over to CPK and had his favorite pizza dinner.
The night before his b'day, I was working and Amaey comes and sits next to me around 11:30pm. He did not seem sleepy at all so I decided to offer him a midnight snack and keep him up until midnight so that I could sing Happy Birthday to him at midnight.We watched some TV, ate snacks and looked at animated birthday cards online and sang Happy Birthday at midnight (at least 10 times) and then ... On his b'day day we had some of his super special people over for dinner Aditi and Rita, Raj, Sid and Nooni. A special night where he decided the menu (cheese quesedilla, guacamole, chips, spanish rice and black bean soup) and cake.
It's beautiful to see them grow. 

Disneyland Summer 07

We went to Disneyland on June 18 on the first day of kids summer break. This summer since Amaey is doing well we decided to hit the jackpot and take all the vacations and family travels.
We drove to LA and spent 1 day at Disneyland and the other at California Adventures. I usually am a snob about going to Disney but this time we planned it such that no one felt burnt out and the kids were so well behaved that it was a wonderful family vacation.

The 3rd day we went to Camarillo. Our family loves the sand and sea and what better place than Camarillo. Seriously... the entire beach was to ourselves, we had a picnic basket full of goodies and lots of sand toys. The boys went walking on the beach and collected a lot of shells and rocks. Arjun, Amaey and Apurva built a beautiful sandcastle, our family tradition.

While Amaey and Apurva took a nap Arjun and I walked the beach and looked for crabs and climbed some rocks. Before we realized we had spent the entire day at the beach and were really satisfied when we hit the road to drive back home.

The most amazing thing-- Amaey jumped the waves. He went all by himself to the water and stayed there. This is unlike him because he used to cry like crazy at the sound of waves crashing the shore and would run as far as possible when the waves would come in.

Update on Amaey

Amaey started the 2007 year really well. However, towards the 2nd week of January the school started calling us to inform about a strep outbreak or potential infection lurking. There were weeks where I would drop him and bring him right back beacuse of some infection or the other. Amaey kept getting colds that he could not shake and would extend into a bad cough.
Around Febuary Amaey got really sick we had to take him to ER. Apurva stayed with him the entire night. The hospital was worried about Pneumonia so they did a lot of tests.

Finally they let him come home around 5am. It was a boderline Pneumonia infection. This is when we decided to take him out of school. We felt that the entire school going experience was being dilluted with all the illnesses and irregular dropoffs.

I signed him up for soccer, mad science, art and music. This helped him meet other children without being in a confined environment for too long. This was definitely the best thing we did for him. He flourished with all the social interaction and became independant as well and is now looking forward to Kindergarten. Yup... Amaey starts KG in September.

He has made some wonderful friends this year. He met Gabrielle at art class and they had an instant connection. They ended up in the same science and soccer class so that was really fun. He also took music with his friend Dylan and has had playdates with Peter. He sure is blessed with a big smile and a warm heart.

Amaey has also become really close to Arjun. They spend every waking hour together and it is really special to see their bond. When Amaey has his 5 day challenge Arjun gets worried and if Amaey cries alot Arjun will start crying because he feels bad.
Amaey has found a new passion for Lego thanks to his brother and he wants us to take him to LegoLand for his birthday instead of a birthday party.

He is becoming an avid listener. If you read books to him he will stay there snuggled up with you for hours. He loves ears... maybe I should say he has a fetish for ears. When he is sleepy he will start playing with his ears however he prefers Apurva's ears the best. But recently their friend Sid took a runners-up place next to Apurva and it is really cute to watch them.

Camp Okizu 07

We went to Camp Okizu again this year. We decided to go early in April which was not perfect timing weather wise - regardless we had a great time. The minute we got there the boys ran off to play with the ball game. They were really comfortable and that was great. We played sorry and chat with other familes. The night was freezing cold. We did not have enough blankets to keep us all warm and next morning it started to rain just as we were making our way to the zipline.

As we stood in line it started pouring-cold rain and we decided... what's the worst that can happen? We all had such an amazing time. Amaey did the zipline all on his own and that was quite an accomplishment. Arjun moved on to being tarzan and climbed a tree and swayed off to other trees while Apurva decided he wanted to cross trees mid air.

We decided to leave that night because it was really pouring and did not seem like it would stop the following day.

We are already looking forward to our next year at camp okizu.

Team in Training

I joined TNT on Feb 07 and trained for the half Marathon. My event was on May 6 at the Avenue of the Giants in Humboldt county. It was a wonderful experience. Both Apurv and I felt that we did not have a choice in inviting ALL into our life but now that it is an integral part we might as well learn more and do whatever we can. The pictures below are from (top to bottom) 15 miles, 12 miles which was our midway madness and Arjun and Amaey gave out medals to everyone. Amaey was also the honoree of the day, 10 miles and 6 miles respectively.

When I started the training and completed 2 miles the first 2 weeks it felt like a lost cause to try for 13 miles. However, the training was really good and the coaches and mentors and team leaders were all genuinely vested in the event. I finished my event in 3hrs and 5 mins and felt really wonderful to have the 3 boys at the finish line.

I have signed up for the next season and am planning to walk-run the Nike half Marathon on October 14 and Santa Barbara half on Nov 3. Will keep everyone posted.

January 9 2007

Happy New Year.

Apurva and I went out for dinner with friends on New Year's Eve and the kids were home with 2 other kids and our nanny. I did not stare at the phone, did not have it on my table while eating dinner. It was cool. I just checked on them once and that was it. Unlike last year when our family celebrated New Years Eve in ER and did the countdown witht he ER docs.

This year tested us as a family. We were stretched in every direction and as life usually goes... nothing else slowed down. Arjun still had school, activites, homework, Apurva still had work, late nights at work and deadlines, sinks filled up, light bulbs blew off, yard needed maintenance. On top of this we seem to have taken the treatment in our stride. It's part of our TO DO list.

Every monday is a busy day, Pick-up the boys, take Amaey swimming, after I change him at the pool I put his Embla cream( a numbing cream) on his arm and drive to the hospital for his blood test. From there we go for Kumon and then we get home. A normal day huh!

No complains, seriously. I would rather have it that way instead of making it a big production everytime we take him to the hospital.

Nov 22 2006

Wrote this in November but did not have a chance to publish it so here goes...

This Thanksgiving was normal. We did everything as planned. I kept staring at Amaey, checking his forehead for fever, I kept waiting for things to get wrong. But the weekend went beautifully. We had really wonderful family time.

It's been a year since I started this blog. It has been a year since Amaey was diagnosed and is on treatment. It has been a trying path but one that has taught us a lot.

School

Amaey is back in school this year. This is really great because it means that he is doing well enough that we do not have to worry about casual sniffles and such.

He has done really well in his first month. He does get chemo once a month and steroids at the same time so that slows him down a bit. But compared to last year where he was happy for 2 days out of 7, now he is happy for 3 weeks out of 4.

His hair is all back and we had to go and get his first haircut as well. He was really thrilled to get his lollipop at the end. Can you imagine not getting a lollipop for almost 9 months??? That's major withdrawl.

Camp Okizu

We went to Camp Okizu on Sept 2-4. This camp is organized for Cancer families. It was a 4.5 hour drive east of Sacramento. We had a wonderful time. They had so much to do for the entire family. We did not have to worry about anything. We had a cabin with a deck, breakfast, lunch and dinner were cooked for us. From 9-12 they had activites for kids based on their age while the adults could chill or participate in group therapy with a doctor.

In the afternoon we did the zip line, Arjun climbed redwood trees. I climbed a tall tree and mid air crossed from one tree to another and belayed down and Apurva was our tarzan jumping from one hoop to the next on top of a tree. Amaey sat and watched his crazy family.

Later the first night they had a camp fire and the kids had a blast singing campy songs and eating smores. Second night they had a dance party. Amaey and Arjun danced till they dropped.

The best part was sleeping outside under the big tall trees. It was beautiful. The weather was perfect...

What amazed us was that this organization runs on volunteers. Except for maybe 2 people that are on a payroll they had 30+ volunteers of all ages. We saw a lot of teenagers. Some were cancer survivors, others siblings off. A few grandparents in the midst as well.

Am I going to be blonde

Now that Amaey's hair is coming back he very seriously asked us if he was going to get blonde hair. All of us in the room cracked up hysterically. He did not know what was so funny... he just stared in disbelief.
I don't know what made him think about blonde hair but just visualizing his dark face and features with blonde hair does crack me up... Some day as a teenager I have no idea what this boy will end up doing. But on my watch I'd say the new set of hair looks pretty darn black to me.

Port is out

Amaey underwent a little surgery on August 15. They removed the device called Port that the doctor had implanted earlier in his treatment. This little device was in his chest area. They used it to give him is chemo and transfusions and such. Since we use it once a month the doctors felt it was safer to remove it to avoid infections due to infrequent usuage.

He still has stiches and a small bandage. But once that will fall off I'm sure Amaey will feel the difference. Apurva took him for this procedure and he told me that Amaey was amazingly brave and did not cry when he woke up from the sedation. I do not know where he gets his strength from but it sure is wonderful.

First vacation

Earlier in the month- Amaey, Arjun and I went to Detroit to visit family. This was our first vacation via plane. I was a little nervous but all went well. It was a great getaway. A much needed change for him. The highlight of the trip was The Henry Ford museum. For a child that lives breathes hotwheels... this was like Mecca for him.

Also spending time with his aunt, uncle and cousin sister was quite a thrill. Houses in Detroit have basements and that was a super novelty for him. We did have to go and get blood test done while we were there but it was relatively painless. Overall he did amazingly well healthwise.

Amaey's Birthday party

We celebrated Amaey's 4th b'day on July 16. It was wonderful to see him enjoy with his friends amidst music, singing and parachutes.
It's really rewarding to see how well he is doing.

He goes to the clinic every week for blood test. After the test results are back the doctor calls and based on his results we give him his oral chemo tablets. Once a month he goes in to the clinic for Vincristine which is a chemo they inject through his port. He also gets his oral tablets and a 5 day dose of steroids. This usually knocks him down for 5 days. He is usually slow, highly emotional, indecisive and low after this. Every 12 weeks he has a spinal tab procedure and for this he has to undergo anesthesia.

I'm sure all of this must sound too much. But, from where we were... this is very easy to handle. Much more manageable and normal.

Graduation

June 7 was Amaey's graduation from his Montessori. The director/founder of the school was retiring so the school closed down after 27 years. This was a special day for us because of everything Amaey had been through.

Here are some pictures from his graduation day.