Going home

Amaey did not have a fever since the one in ER on Saturday and his WBC looks good so we are going home. Yeah!

Back in

When I took Amaey for his CBC on Thursday we found out that he was neutropenic. So we started taking all the precautions. I did let him go to his science and piano class just because they had 3 to 4 kids max in the class. Also, these are 2 things Amaey literally looks forward to. It's almost like taking food away from him if he cannot attend them.

Now I wish I hadn't taken him anywhere because I had to bring him into ER this afternoon because he had a fever.

They moved us from ER back to 1 North and in our old room. Amaey is back on broad spectrum antibiotics. The good thing is that his WBC is up from 100 to 500. If his cultures are negative and if his fever doesn't spike high we will go home before christmas otherwise we will be celebrating the holidays in here. Oh Joy!

The hospital white board

We always draw on the whiteboard... This time the little animals won our heart.

Surprise

What a surprise, we got to go home on Sunday night. I did see a beautiful rainbow on my way home from the hospital... sound silly but I believe in it.

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.