Monday, November 30, 2009
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.
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.
Saturday, November 28, 2009
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.
Friday, November 27, 2009
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
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.
Thursday, November 26, 2009
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.
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!
Wednesday, November 25, 2009
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.
Tuesday, November 24, 2009
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.
Monday, November 23, 2009
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 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.
Monday, November 16, 2009
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.
Monday, November 09, 2009
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.
Saturday, November 07, 2009
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.
Monday, November 02, 2009
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.