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.

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 e went to the playroom for an hour. I will see how he does after all that excitement.

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 on 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.

2nd last Cyterabine

We started pre-meds on Wednesday and checked-in to the hospital on Thursday for Amaey's ARC and Peg chemo. Technically we should be home by Saturday but so far that has never happened.

This time around they are continuing his pre-meds round the clock which means he is very sleepy because of ivy benadryl. However, he still went to the playroom yesterday and this afternoon. He is doing well. They just started the 3rd round of the chemo and the last round will be at 5am tomorrow. Around 10am he should get his Peg and then go home by 1pm.

We have a Kids & Art event at my house this Saturday. We have a wonderful artist working with 6 adults. This is art therapy for parents of kids with cancer. We plan to do similar art therapy events every month.

Meds at home

When Amaey came home with the ivy antibiotics, it was a great idea. He could continue his meds without being in the hospital. He was in the comfort of his environment, had all his playdates, got to be with Arjun and sleep in his own bed.

However, I was on the edge. I can only speak for myself... Amaey needed his meds at 8:30 and 11pm and then at 7am and 3pm. We had to take his meds out of the fridge 30mins ahead of time. I seriously could not sleep for those days. Being responsible for your child in this way is hard. I was a nurse, sanitizing everything, flushing him and pushing meds through his port. I kept worrying that if I do something wrong he could get an infection. The night I gave him his last dose, I slept like a baby. It wasn't a hard thing to do but for some weird reason there was so much anxiety.

Back home

We got home yesterday. Amaey's counts were fine and he did not have a fever or anything. He does need to continue his ivy antibiotics so a nurse stopped by yesterday and showed us the drill. Now, I'm a nurse too. I have supplies to open up a small practice of my own.

Restaurants

I was cleaning my wallet and one after another I took out receipts for CPK, Panda Express, Chevy's ...

I started thinking about all the restaurants we have eaten at thanks to Amaey's cravings. I wish I had saved all the receipts, I could have made a nice collage or even a book. I was really curious so I started writing down all the restaurant names and this is what I got-- (the first 7 were absolute cravings from his meds)

- Pasta Pomodoro

- CPK

- Annapoorna

- Fresh Choice

- Chevy's

- Shiki's

- Panda Express

- La Cumbre

- Red Brick Pizza

- Sino

- Sweet Breams

- Yogurtouille

- China Kitchen

- King Yuan

- University Cafe

- Zao's

- Pasta Primevera

- Mr Pickles

- Quiznos

- Amici's

- Shabuway

- Elephant Bar & Grill

There are many more that I can't remember full names of. I remember the time I was at Panda Express 3 to 4 times a week. Amaey would wake up dreaming of the penne in alfredo sauce. Then he moved to the Hillsdale Mall Food Court. I tried everything there while he settled with Panda. At some point I would shrink at the site of the food court. For the longest time CPK was top of the charts. And then he was in a phase where he had to try different cuisine each time we went out.

Quite a wild culinary ride that is still evolving. With his love for science and food I wonder if he will become a food scientist in life.

Still here

Nothing has grown in the cultures so that is real good news. No fever. No chills. But we still do not know what caused these things in the first place so we need to continue the 7 day dose of ivy antibiotics.

The hospital is trying to work with our insurance to see if they can send us home today and they can send a nurse home with the infusion system and the nurse will teach us to administer his meds. We are absolutely fine doing that if it means he can go home. He is doing fine so he might as well be home in his environment.

Jan 19

We came in for Amaey's Etoposide and Cyclophosphamide. The rains made today feel kinda dreary and cynical.

We dropped Arjun to school and drove to the hospital. After the blood test we had to wait for an hour for the results. Results were good and he was good for chemo. Around 11:30am they started his chemo and around 2pm after completing both the chemos they started a 1hr flush. Suddenly Amaey had the chills so I went and call the nurses and then there seemed like an emergency in our room. All hands on deck, Amaey shivering like crazy and a weird sinking feeling.

They need us to stay for 48hrs in the hospital. They need to do cultures and start him on antibiotics to rule out infections. They want to see what is causing this because this chemo would not give such a reaction. Also the reaction started an hour after the main chemo was given.

Amaey is knocked out from Benadryl right now and as soon as they have a room we will move in.

Coasting

On Monday Amaey was supposed to get his outpatient chemo but his counts were low so we came home. He is Neutropenic at the moment we will go back on Thursday.

Thursday was pretty much the same, his counts went up just a little so they could not give him his chemo. However, his hemoglobin did go up from 8 to 9.3 and I want to give the food all the credit. The cookbook has special food for anemia and we cooked most of it and Amaey religiously ate all of it.

Now we get the entire long weekend off and then go in on Tuesday.

Home

We got to go home late last night and that was quite a surprise. The last two Methotrexate stays, Amaey has made it home in 3 days and that is really great. This time around the hospital stay was relatively painless.

I picked up a book at the hospital called The Memory Keeper's Daughter. it was an amazing read. I could not keep it down. I finished it by the time Amaey was back home. I highly recommend it but bear in mind it is an emotional book.

Amaey did like his healing tea. I don't know if there is a relation but since we have started making this special food for Amaey he has been able to release the chemo from his body much faster. I think all this food interacts with the body and helps dilute the chemo faster. This only works with the Methotrexate stays unfortunately I have not found a magic solution for his painful ARC stay.

I cannot believe it... we only have 3 more hospital stays and then Amaey's intensification phase is done.

Food

A friend of mine gave me this amazing book called, The Cancer Fighting Kitchen by Rebecca Katz. For the first month the book just sat in the kitchen. I did not want to open it or indulge in it. Then on a whim I leafed through it and was surprised at the amount of information that was in the book.

The book talks about foods for 2 days before chemo, week of chemo, in between chemo. When one has mouth sores, nausea, upset stomach and such side effects of chemo. It also talks about foods for neutropenia, anemia, and such.

Preparing for Amaey's hospital stay I decided to make the Magic broth. When Amaey was in the hospital few weeks ago I took it for him with no expectation that he will ask for it. To my surprise he drank it up and asked for more the second day. Apurva and I were so surprised. This boy never eats anything when he is on chemo. He is constantly hydrated and the smell of the food in the hospital grosses him out so put those two together and he has no real appetite.

Now that the Magic Broth worked I started reading the book closely. When Amaey was at home during the winter break I made a Chocolate Banana smoothie, Mango Coconut Smoothie and Triple Berry Smoothie. He had them all with great taste. The Chocolate Banana Smoothie has almond butter in it and he did not complain... wow heaven.

Next I went to the soups and made spicy sweet potato soup, carrot, fennel and orange soup, and watercress orange soup. He slurped them up. You have no idea what this means. Apurva just called from the hospital to tell me that Amaey ate up all the carrot fennel orange soup and would like some more for tomorrow. I'm really ecstatic.

For tomorrow I have made him a Healing tea. It has cinnamon, cardamon, coriander, and ginger in it. When he is ready to drink it I will mix in almond milk, maple syrup and a hint of vanilla essence. Not sure if he will like it... I'm really curious.

Happy New Year!

Wishing everyone a Heathy and Happy New Year.

We have not started the year with any profound resolutions. We did not even talk about what we wish for. All we want is to take each day as it comes and we will give it our best.

We are in the hospital for Amaey's Methotrexate stay. We are in El Camino and we will be here until Thursday. Amaey is in really good spirits and that is wonderful to see.

We had a good restful and much needed break.

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!