Quiet

We have had some nice quiet days. We managed to avoid the ER or hospital run due to fever. This week we also got a break and have to go to the clinic only once for CBC.

We also went to celebrate Holi at Stanford. We did not go last year because we were not up to it. But this year, the weather was perfect, Amaey was feeling good and it just felt right.

The biggest news is that Amaey went to school on Monday after 5 months. It was very emotional. It was a short day at school and he managed it fine.

Happy

Amaey's counts are up and he is not neutropenic anymore!!

He was so happy when the nurse brought his lab results. Before she could say anything he was already asking to go out to eat, go to Adi's b'day, have a playdate, go watch a movie... I couldn't contain him. So he did get to eat at Pasta Pomodoro. He was craving ravioli in creme sauce.

Tonight he gets to go and watch "How to train a Dragon" with Apurva, Arjun, and Amol.

Feel trapped

So Amaey did have a drop in his counts. He is very neutropenic and he needed a platelet transfusion.

We came home after 7hrs at the hospital. Both Amaey and I were feeling very humpoof (Amaey's word for blah). It is Amaey's buddy's b'day party today and he is going to miss it. I can sense how bad he feels. He was really sad at night and I told him I felt the same way. He wanted a head massage to help him fall asleep and he was so cute, he started giving me a massage too. He said because I was humpoof I needed a massage too. He is just so precious.

This morning he woke up feeling blah and I told him to change his day cycle. I asked him to pick whatever he would like to do first thing, even before brushing and he ran off to play his new game on the playstation... I know that will make him feel special.

We started lockdown a week before his chemo. Then we were in the hospital for a week. We come back and we are in lockdown for another week to help him regain his strength and now we need to be in lockdown for another week so that we can avoid the fever and hospital stay. I know he feels trapped. I feel that sometimes. The routine of all of this kills me sometimes. I can't be impulsive and jump out of bed and say today I'm going to do something different.

This whole cycle is so weird. You feel guilty for not being there and you feel guilty for being there too much and wanting some space. I'm just scared of the weekend, that's what it is. I know Apurva and I are constantly going to stare at his face, look for signs check his temperature... it's almost psychotic in a way.

CBC today

Amaey is slowly regaining his strength. He is slow and does not eat much but his spirits are high. He is happy to be home but sad that he cannot see any of his friends or go outside and do anything. However, he understands the meaning of lockdown.

We have his labs today and lets see what they says. This is the week when his counts spiral down and weekend is when we have usually taken him in for a fever. We are really hoping to avoid that.

Amaey is home

Apurva just came home with Amaey. He is so so so happy. He has a smile that looks bigger than his tiny face.

So where are we?

It has been long 4 days and they are not over yet.

I don't know where to begin from since a lot has happened since we got admitted on Tuesday.

Tuesday day was fine until 6pm when the 1st does of chemo was making it's way in Amaey's body. He slowed down and got really cranky and tired. He slept early that night but was up the entire night because he had intense diarrhea. In between nurse check-ins and meds and waking up to go to the bathroom the entire night went in a state of frenzy.

Apurva came in to relieve me in the morning. When I left the hospital at 9am Amaey was still weak and in bed and he sounded cranky too. Throughout the day when I would call to check-in he seemed slow and sleepy. He did not have a fever so that was good. Apurva forced him out of bed around 6pm to change and freshen-up and he went back to sleep again. Around 8pm he tried to feed him some broth and called me so that I could sing to him. I did, and all 4 of us were on speaker and Apurva asked Amaey to say a few words to us... nothing. We all tried to get some reaction from him but nothing happened. I thought he was low energy and sleepy so I did not push it and put the phone down.

After My phone call, Amaey threw up. Apurva said he threw up a lot and then he almost became listless. He stared with his eyes but said nothing. He just stared blankly. Apurva got really scared and called the nurse who called the doctor. I got a call from Apurva around 10pm. He said Amaey did not look good and he wanted me to leave and come to the hospital right away. I reached the hospital to find lot of activity outside his room and atleast 8 people around his bed. Everyone was looking at a still, pale, bloated little child. I do not know what they were saying. They were saying a lot of things. Apurva was trying to repeat the same information over and over again to different folks. Next thing we are taking him for a CT scan. I was holding his hand the whole time. Apurva and I were trying to make him talk, move, move his lids, squeeze my hand... nothing. However, I could eel the warmth from his palm and that made me feel like he was there.

After the CT they decided to take him to the ICU. A lot of different things happened in the ICU. He was looked at by lot of people, new meds, ivy and such. He still looked the same. However, I was still holding his palm and I realized that he was grabbing my finger. He would not let go. That was a good sign. Around 4am we saw his eyeballs move very slightly. I do not remember the time but he was suddenly agitated and tugging his pants, they had hooked some bags for him to pee into and he was trying to pull it off. We were so relieved to see him coming back to life.

Long story short, lot of different things happened in the hours we were at the ICU. Finally at 10ish they moved us to a recovery room in the ICU and that felt good. Around 4pm they moved him back to his room.

He is still weak and complaining of aches and pains. BUT he is much better than he was the night before.

Apparently his sodium was very low and his electrolytes were out of whack. They could not give him his last does for ARC which was due at 4am. The oncologists decided that they will not give it to him anymore. He is officially done with this deathly medicine.

He still needs to get 1 more chemo but they are waiting for his lab results before they can do anything. Not sure when we will go home. I would rather he get better before we leave the hospital. This was bloody scary and we don't want to take any chances.

Last ARC

We are in the hospital for the last round of Cyterabine.

They started the chemo at 4 pm. He is still on prednasone so he is still pretty hungry which is good because the chemo will kill his appetite.

We just found out that PF Changs is around the corner from the hospital, we were so shocked that we did not know that. So Amaey already knows what he wants for dinner tomorrow.

So far so good.

Wow I have cooked up a storm

I'm so tired today. I couldn't figure out why until Amaey came in and asked for some Macaroni and cheese.

He started his premeds this morning. 1 med makes him drowsy and the other med makes him hungry.

This morning for breakfast he had pancakes and sausages with a glass of milk.

For seconds I gave him more pancakes and sausages and some raspberries.

Then the drowsiness set in and he slept from 9am to 11:30am.

Then he was hungry so I made mini idlis, edemame beans, raspberries.

I was eating linguine for lunch and he liked the smell so he took over my lunch.

After everything was done he looked up and said, can I have boiled eggs....

When we got in the car for the hospital I gave him a z-bar and later a fruit bar.

We came home and he had cheese pizza for snack and shared some of my tea.

Minestrone soup and bread for dinner.

Just made M&C and before he left the kitchen he said he was still hungry and he will come back for more food.

Wow, I cannot imagine the kind of havoc these meds must create inside him. It always amazes me.

I feel like I was on his meds... had a roller coaster day at work. I'm re-writing a class for next semester and I thought I was done with my work to find out that I need to re-think 80% of the material. As for the 2 classes I'm teaching the students are dragging their feet and submitting their assignments at the last hour. The class ended today and suddenly I have 24 assignments to check in 2 days.

I think I'm just complaining because I'm dreading the hospital stay. Every speck of my body is fighting right now.

But something wonderful happened to bring a warm fuzzy smile at the end of the day- Kids & Art got it's non-profit status. Kids & Art Foundation is a 501(c)3.

This week

After the Monday chemo, we did not have to go in to the hospital at all. They decided to give him a break from blood test as well. We have had a really wonderful week. This weekend is lock down since Amaey has to go in for ARC from Tuesday.

This is the evil one but if we look at the bright side... this is the last evil one.

I will take him in on Monday for labs and I will start his oral premeds. If his labs look good we will go in on Tuesday whenever they have a bed for us.

We also found out that they have lifted the H1 N1 flu curfew which means that Arjun will be able to go and see Amaey.

Etoposide

We went in for Amaey's day chemo. Since he had a reaction with it last time they had planned to give him premeds.

They decided to give him extra hydration as well since he had vasovagal and had fainted.

It made it a longer day but it worked like a charm. As soon as they gave him his ivy benadryl he was instantly drowsy. He slept through all of his chemo. He woke up 15 minutes before leaving.

The minute they said he was done and ok to leave we literally ran out of there. I just did not want for anything to happen. I wanted us to be home.

Need blood

Amaey's numbers look great .011 but his hemoglobin is low so they will transfuse him tonight. Once that is done and everything is OK we will leave in the morning. He was slow and complaining of headaches so it all makes sense.

This is better than taking him tomorrow or Friday for an emergency transfusion. He has outpatient chemo on Monday so we need him to be strong and ready for it.

Doing fine

Amaey is doing fine. He is a little slow today which is natural but his levels are coming down. He is at 2.4 and as usual once we are at .02 or less they will let us go home.

Today Aditi spent the afternoon with him and that was wonderful. He was really sad when she left. He is really close to her and I can understand that it will be a big loss for him now that she is moving to NYC.

However, he is equally excited because he will get to go to NYC and spend time with her. We have told him that when he is OK to fly we will take him there.

One of the Kids&Art artists

Sanjay Patel, one of our Kids&Art artists who worked with Amaey and other kids, has come up with his second book. This is quiet an amazing looking book. I absolutely want my hands on it. His website Ghee Happy also talks about his first book.

At El Camino

We had a really wonderful and much needed week off.

Arjun had the Presidents week off from school and Amaey was home feeling himself. It was really restful and peaceful.

Over the weekend we went to Napa to celebrate Pratish's b'day and to toast to Aditi's move to NYC. I did not realize that we took a day off like this after almost 4 months. It was so refreshing.

Sunday was another wonderful day. We went to Draeger's in San Mateo to meet the author of 'The Cancer Fighting Kitchen', Rebecca Katz . I had to meet the person that created such a tremendous book that can make Amaey eat Kale and Swiss chard. Amaey and Arjun helped her cook Quinoa at the event. We got to try lots of gluten free foods and I got to meet some more alternative healers. All in all it was a fun outing for the 3 of us.

Today we drove to El Camino after getting Amaey's labs drawn at LPCH. He was good to go so they have started his second-last Methotrexate. Usually this is an uneventful stay and we hope it stays that way.

We are FREE

We just got the OK to go home.

Amaey's ANC is up and they are happy with the way he looks.

He is craving food from a persian restaurant in Campbell so our plan is to pick-up food from there and take it home for dinner.

Status

It's Tuesday, same status quo. He seems to get a fever infrequently so we do not know if something is going to grow in his cultures. But until he has a fever and he is neutropenic we are here. He does have a little energy so he went to the playroom for an hour. I will see how he does after all that excitement.

He took a long nap after coming back from the playroom. We decided that I will stay tonight so that Apurva can work with Arjun on his finals revision. Apurva has taken the day off tomorrow so I will go home and work and pick-up Arjun from school.

Today was one of those days you know will happen but are glad it hasn't. The cleaning lady locked the house real well before she left and Arjun and Vicky could not get in the house after school(Vicky only had the one lock key and not the deadbolt etc etc). I asked them to go to the library so that Arjun could finish his homework. Apurva went home early and picked-up Arjun from the library and went home. Oh Well...

Just checked Amaey's temperature and unfortunately he has spiked one again Arg!! which means 48 more hours over hear.

We are zen.... we will get through this.

Checked into our hotel

Amaey spiked a fever yesterday so Apurva took him to ER around 3:30pm.

His fever came down with tylenol. The CBC came back with low WBC. Neutropenic and fever so they started the ivy antibiotics right away. They did not have a room available until midnight so the two hungry and tired boys had a tough night.

Apparently they transfused him for hemoglobin overnight since it was low. He spiked another fever at 4am and since then he has been sleeping. Apurva is at work, Arjun at school and I'm at the hospital working on my class and waiting for him to wake up.

Transfusion

In the hospital for platelets transfusion. Amaey's counts are low so the choice was to wait until Monday or transfuse today. We really don't need an ER trip this weekend so we went ahead with the transfusion.

They also did an xray on his right foot. Yesterday Amaey slipped while playing and he woke up in the middle of the night with pain and he was limping today. Since chemo can affect the bones they just wanted to be on the safe side rule out a fracture. Luckily it's not. He just needs to put his feet up rest for a few days.

Rest will be good for him because he is really wiped out at the moment.

A scare

We did get to go home from the hospital on Monday evening. Amaey looked ready to go. He was slow but he was fever and pain free for 24hrs so that was good.

Tuesday morning Amaey was slow. He woke up had some milk and went back to sleep and finally at 11am he rolled out of bed. He looked happy and hungry. He was craving pancakes. So the two of us ate a pancakes and eggs lunch and at around 12:30 the two of us started looking for recipes on food network.

Suddenly Amaey complains of a stomach pain and feels like throwing up. We rush to the bathroom and right in front of my eyes, he just sways and loosens up and faints. I tried to hold him but he was so limp that he slipped from my hand and fell on the floor. I picked him up and moved him to the sofa, he was sweating. He gained consciousness and asked for a blanket. He was really low. So I called the hospital and they called us in right away.

I drove like a maniac. Funny thing was, when I put him in the car and started driving, he was fine like nothing really happened. He was reading and alert. It was so freaky.

I put him in a wheelchair and rushed him to the clinic. They were so prompt. They wheeled us in a room and accessed him and took his blood and hooked him to the monitor all within 15 minutes.

Long story short, after an EKG and lots of other doctor tests around 6pm they told us that everything looked good. They said he had something called the vasovagal response. He had a stomach cramp, his blood pressure went down and that caused the dizziness and fainting spell.

We were so glad that was all it was. He is slow and resting today. He is borderline neutropenic, which is expected after his chemo. But he is his witty, comic self.

Wishful thinking

Nope we did not go home on Saturday. We are still in the hospital hopefully we will go home today.

On Saturday after Amaey got his Peg at noon, he was fine. He was in pain because Peg are 2 injections given at the same time on each thigh. Amaey says it hurts a lot. Apurva and I exchanged our shifts and around 6pm Amaey started complaining of eye pain. Severe headache and eye pain. When I touched his forehead to press it I realized he had temperature as well. Amaey's tolerance for pain is pretty high, when you see him crying out of pain you know it is severe. They gave him tylenol and his last dose of Benadryl. I was hoping that would help him. But he was really restless. Finally after an hour of cold water compress and sheer tiredness he fell asleep. The nurse checked his temp and it as still high 39.5. After 4 hours on the mark his temp that had gone down to 38.6 was back up to 39.5. This carried on throughout the evening and night. At midnight his eye pain was severe again and they suggested morphine. I could not consider morphine... it felt too much. I asked for a resident consul and she assured me that morphine dose for kids was not severe. It would help with the pain though.

At 4am he was tossing and turning and exhausted with pain and a sleepless body. I made him sleep with me hoping that would help but finally at 5am I asked for morphine. His pain was unbearable. Finally, the two of us slept soundly until 8:30am when the nurse had to take his vitals. He looked much better I could see that he wasn't clenching as much. However, he needed tylenol again at 9am and then when the doctors came in for their rounds at noon, Amaey had a major meltdown. His intense pain was back. The doctors needed eye drops in his eyes and they were stinging him. He started getting upset with me. I finally had to call the doctor back in the room and have her give Amaey a talk. She was really nice. She stayed until I administered the drops and finally prescribed morphine one more time. She could see that the pain was very high and she really needed him to relax and rest.

The reason I was giving him the eye drops was a decision Apurva and I had made. Apparently Cyterabine can give a form of conjunctivitis thus they put eye-drops for the 2 days of administering the chemo. So either, Amaey wipes his eyes before the drops really go in his eye or the drops do not always go in his eye, whatever the reason, Amaey ended up with the eye pain. So we came up with a plan to administer the drops ourselves just to have more control over the situation.

When I left the hospital at 1pm he was fever free and the morphine had kicked in so I could see that he was more relaxed. Apurva said that the last time they had to give him tylenol was Sunday around 5pm and he was fever free the entire night. He slept well and when I cam in this morning he had a big smile on his face. He is himself today so i dropped him off to school upstairs. If his counts are stable they will definitely let us go home today.