Official start of maintenance phase

Today marks a very big day in Shivam's fight. He started his maintenance phase. Admittedly, it got delayed by 3 months, but so what... He wrapped up his intensive treatment and is on his way to success. We are VERY PROUD of you Shivam. We LOVE you.

I know that I have not been posting your status updates. I promise I will take out time soon and back fill all the major updates that happened in the last 2 months. And a lot happened.

One week over...

Today marks the one week anniversary of Delayed Intensification. Shivam has become a lot more moody and starts crying for no reason (or so we think). For some reason, my patience has also dwindled. Maybe it's the stress. Of what, I don't know.

His weight is almost stable. It's low, but ok.

I connected the Wii Fit today. One of the best investments we made. Shivam, Meera, Urmila and I freaked out on it. Shivam loved the runnign and the soccer ball game. Urmila loved the Hula Hoop. We had a fun few hours.

Tomorrow is another round at the hospital. Let's see how it goes.

Delayed Intensification - Day 4

Day 3 went with no hitches. Almost. He saw his neighbors and wanted to go to their house to play. It took us almost 1/2 an hour to convince him to not go as his counts are very low right now.

Unfortunately, his weight has almost dropped to near critical levels. If he does not eat today, we will have to get his NG tube back on. I would hate to do that, but...

I am surprised that even though he is on dexa, whose side effect is increased hunger, he has still not shown that desired side effect. I hope he eats today. I am quite tired to scolding him all the time.

Tommorow might be the dawn of a better day.

Delayed Intensification - Day 2

Everything is coming back now. The mood swings, the vomiting, pain... everything is back. I skipped giving him Bactrim today as there has been a medicine overload. Zofran, prevacid and dexamethasone - all twice a day.

On the wonderful side of today, Shivam has learnt how to take tablets directly via mouth!!! No more crushing the pills and mixing with water and forcing via syringe in. Cool! Really cool!!

We are still trying to get the right timing on medicines so as to reduce vomiting.

Delayed Intensification - Day 1

Today is the first day of delayed intensification. Shivam did a great job of keeping his weight constant over the last 5 days since he shed his NG tube. Mummy and Bapu are constantly running behind him to eat.

Today has been partially ok. After getting a backpoke and a bunch of other chemo drugs, he is pretty down, but still cheerful.

The biggest news of the day was that he barely qualified for Delayed Intensification. His ANC was 765 (the border line is 750).

Nose tube out, again

I thought I will blog about this fabulous event before it ends. Yesterday, Meera managed to pull Shivam's NG tube out. It was lat evening and after discussing with the Dr., we decided to leave the tube out for the night. Shivam ate a decent amount of food and loved his new found freedom.

Early today, we reached the HemOnc clinic and had a long discussion with Kathy, Shivam's dietician. We decided that as long as his weight remains above 12.7 kg, it's ok to be with out the nose tube.

Shivam is loving his life without the tube and is make quite an effort to eat food (with, of course, a little prodding from all of us).

Rush to Emergency

Monday night was spent tossing and turning in the bed with pain and nausea. In the morning, his fever touched 101 and Urmila and Bapu rushed him to the hospital. I had to go to work for some meetings.



He was admitted in the hospital on Tuesday morning and we got discharged on Friday afternoon. The entrie trip was just constant fevers but no +ve results in either blood or stool tests.

The doctor got a little concerned about his dropping weight and adviced us to add 1.5 bottles of Peptomin 1.5 (stronger) to his current peptomen Junior. Shivam did NOT tolerate that at all and kept throwing it up. We stopped it and now we have moved back to Peptomin Jr.

Friday, Sat and Sun were the hottest days of this year and we had to get an AC for the room to keep Shivam cool.

Monday, his blood results came out good and the Dr. gave the go ahead to start his Phase 2 of Consolidation. Today, we are full day in the hospital to give his Cytoxin and Ara-C with hydration and monitoring.

The dr. again adviced us to put his nausea meds on a schedule even if he is not showing signs of nausea.

Shivam, you have grown up so fast

Shivam had another back poke and sleepy room visit today for some chemos. Generally, these OR visits are planned for early morning so that his 6 hour no food restriction happens during the nighttime. Unfortunately, this one was for 3 PM. Man, it was hard to keep him away from water and bhujiya. Yes, all he wanted from the morning was bhujiya.

We thought we were smart by not eating our breakfast and lunch in front of him. Well, he was smarter. Around noon, as we were planning to leave, I was gobbling down my lunch downstairs while he was being "entertained" upstairs. Suddenly, he came down and saw me eating. And then he tells Mummy in a whispering, conspiratorial tone: "I am not going to have any food now. I have to go to sleepy room today. Once I come out, I will have bhujiya". Oh, that sweet innocence. And that understanding. And sacrifice. I did not expect this level of maturity from a 3 year old. But then, how much experience do I even have...

Another sign. While we were waiting in the hospital room for the Dr. to come in, Shivam innocently asks: "Why do we not have the automatic (purell) dispensers in each room?". I had no answer and I told him to ask the Dr when she comes in. And he did ask her. She did not have an answer either and she called the attending Dr. Dr. Thompson took his request with full seriousness and discussed few reasons on why that might be the case. They both talked for a minute (like adults) and then in the end Dr. Thomson promised him to raise this issue to hospital. Cool.

One thing that I learnt from this is to let him voice his opinions. Not stub him or tell him this is how it is. Just because something is the way it is, does not mean he cannot change it. This is America.

All public access to blog disabled

I disabled all public access to the blog today. Somehow, something was not looking right. Whenever I blogged about Shivam recovering, he would fall sick. And that's when I decided to stop this.

It was a very hard decision to pull the access away. I knew that 99% of the people reading the blog and commenting had nothing but goodness in their heart for Shivam, but then, there was somebody who didn't. And for me, Shivam comes first and foremost.

I know that he will now not see the wishes of hundred of people, but that is a penalty I am willing to take. I know these people have blessings for him in their heart and they will still keep on blessing him.

Love you Shivam. Always there for you.

Another blood transfusion today

Shivam had another blood transfusion today. Nothing major, but we spent almost the whole day at the hospital.

I have now learnt how to flush the port on his chest. This now saves us an extra daily trip to the hospital. With rising gas costs, learning all this stuff is almost a must.

Lot of folks e-mailed/called to find out his condition. Well, his condition is how it should be at this intensive phase of the treatment. Some days are ok, some are not. He is getting a huge dose of chemo and his is just a 3 year old. How can he be? Brave. Definitely. In pain. Yes. Cranky. Yes. Smiles. Sometimes. Scared. Lots of times. Wanting everybody around him. Always. Playful. Whenever he has had zofran. And the list goes on...

Beginning of third week of consolidation

We are now one fourth way into consolidation phase. His counts are zero. Today is another day of heavy chemo doses and it's going to be painful. He has a spinal tap AND and muscle injection among other things. Not looking forward to it at all.

His mood swings have become way too much. Either we listen to him or else he will go on a crying spree and then ultimately throw up. Sometimes it difficult to agree to either condition.

Hanging in there...

Shivam officially enters the "No contact" zone

Shivam's blood count dipped below critical levels in Tuesday's results. Right now, he has no infection fighting ability. This is likely to remain zero or near zero for next 7 weeks (basically till the end of consolidation phase).

This news has 2 inferences. One, he is responding beautifully to the treatment. Second, he is in an "isolation" zone and his contact outside family is restricted to only critical meetings as his counts are near zero.

Actually, there is another inference too. Starting from this weekend, he will be monitored at a high frequency for blood transfusions in case his RBC and platelets fall below critical levels.

This week again we have daily trips to the hospital to get the chemotherapy in the morning. In the evenings, we give the medicines at home. Today, at the hospital, Shivam tried the rapid dissolve mint zofran tablet via mouth. And he liked it. We have requested it's prescription so that we can at least take one medicine off the tubie.

Another achievement today: Last night, Shivam pulled off his nose tubie. It was late night and the Dr. said it was OK for him to be without the tubie through the night. Well, that is not the achievement I am talking about. Urmila actually placed his nose tube (tube via the nose into the stomach) under nurse supervision. What it means is that if his nose tube ever comes out in the future, Urmila has the skills and the know-how to put it back. Yay!!! Saved 40 miles of driving. Way to go Urmila!!!

A brief lull

Last few days have been mostly quiet. Quiet in the way of medical emergencies. Shivam and Meera, of course, are having a lot of fun together and keep us very busy all throughout the day. Meera manages to keep mummy busy though the night too.

We were hoping to get Shivam’s blood count results from the test yesterday but looks like the hospital lab goofed up and did not run the blood count tests even though Dr. Rabi Hanna had ordered them. With a bit of luck, we would find them out on Tuesday’s tests.

With his port continuously accessed, we were quite afraid to give him a proper bath. Yesterday, they removed the access tube as he gets no medicines on the weekend. Today, both Shivam and Meera had a long bath and then followed that with a dance session watching “Rock and Roll Family” on Zee TV. Exhausted after the crazy running around, Meera, Shivam and Urmila have crashed out and sleeping.

We are trying to move Shivam to his own room. Step one of the transition began today as we moved a king size bed in his “new” room with all his toys and stuff. The plan would be to gradually make him sleep on his own in his room (currently, I will be sleeping with him). The major factor that scares me is what if anything happens to him while he is sleeping? There are many scenarios and I do not even want to list them. But we definitely want him to go back to his old, pre-cancer routine of sleeping in his own room. Let’s see how this attempt goes.

Things are slowing down

Things are now slowing down for Shivam. He feels tired almost all the time and is sleeping a lot more than usual. His legs have also started to become weak. Infact, he was not able to climb the stairs in the evening without one of us holding both his hands. And today was just the 2nd day of the treatment. His crankiness has also increased and he has become very touchy. Even a small "no" can make his throw tantrums like crazy.

We are trying hard to keep our smiles up and not lose temper or show our frustration to him.

"Courage is going from failure to failure without losing enthusiasm."
-Winston Churchill

Round 2 officially starts tomorrow

The lab work for Shivam came out good enough today for Dr. Rabi Hanna to approve the start of consolidation phase tomorrow. Although by the time we left the hospital in the evening, his number were not back, Dr. Rabi said that we are on schedule and he will call us if he sees anything bad in the numbers. Since the call did not come till now, I am assuming we start tomorrow. Today's port access procedure was the best till now and he did not cry at all. The expert nurse (thank you) and the social worker (thank you) were fabulous and he was totally distracted during the procedure.

We got a little more insight into what's coming. At least what's coming for the next 2 weeks. Tomorrow starts with a Bang (Bang with a capital B). We start with Cyclophosphamide, Cytarabine and Mercaptopurine by IV followed by 6 hours of saline flush and continuous monitoring and observation in the hospital. Wednesday is the back-poke (aka Sleepy room visit) of IT Methotrexate, Cytarabine and Mercaptopurine. Another long day at the hospital. Thursday and Friday are relatively shorter visits with just Cytarabine and Mercaptopurine. Saturday and Sunday might require lab visits to make sure his blood counts are OK. If not, he will need blood transfusions.

Next week is something similar to this week. The two weeks after that have the next regimen where the prime chemo is Vincristine (given by an injection on the leg muscle) along with other regular meds.

Assuming everything is going fine, the second month of consolidation will be similar to the first month expect that Methotrexate will not be given.

All along these two months, his blood counts will be observed almost daily and blood transfusions administered if needed. There are a few other chemo drugs that will be given via a spinal tap but I am not sure of their schedule.

His counts will start going to zero by the end of this week and then again he will be under very strict meeting code till he recovers. I know I don't have to say this (and please forgive a father's heart if you feel offended), but do not visit him if you or anyone in your household is sick, has cough or cold. If you have a kid who goes to daycare, do not come directly from the daycare to visit. He lost two months of treatment and went through hell because of a common cold virus last month and I do not have the stamina to through another one. I hope everyone understands. Again, I am feeling very bad to write it down but look at this from a fathers' eye and you might understand.

Shivam also lost some weight this week (down by 1/2 kg). Dr. Rabi was concerned and advised us to try to increase his tube feeding a little bit. The problem with this is that he starts getting nauseated with any feeding over 1 1/2 oz per hour and the chemo will cause more nausea. Again, zofran and atavan will be our friends for the next two months and hopefully his nausea and pain would be under control.

I feel I am just babbling at this point without any useful information. So, good night and I will update tomorrow on things go.

Thanks for charging us up

I thought a lot on today's post title. "The day after", "Round 2 starts today", "End of the honeymoon", and many more were possible candidates for today's contents. I ended up selecting "Thanks for charging us up" as it reflected a positive outlook to the upcoming 2 scary months and also honored the support and love we have been getting form our well wishers and friends and all the anonymous blog readers.

Shivam's birthday went great. Although the number of visitors were small, I think this was one of the best birthday parties I have seen. The love, energy, caring attitude and attention to Shivam were phenomenal. There was always somebody around him, ready to take him in their arms if he felt weak, or nauseated or tired.

Thank you everybody for sending your wishes along his way. Each wish, each prayer, each love-filled comment, each word of encouragement makes us stronger. Makes us believe more in God. Makes our dream of seeing Shivam getting strong, stronger. It gives a strength that we never knew existed in us. It reduces the pain of seeing our son in pain and in nausea.

Treatment round 2 starts today. It's the first day of the "consolidation" phase. He will be evaluated extensively today for blood counts and other things. From tomorrow earning morning, we will be spending most of the next 2 months in the hospital. God willing, we will generally go in the morning and come back the same day. Almost everyday. Of course, there will be "free" days where his body will be given time to recover from the treatment the previous day. More on the treatment as it occurs. I try not to read too much in the future as it has the nasty habit of biting me back.

I wanted to share some of the moments that we captured on his birthday. It was a hard task to pick the best and I do not claim these to be the best moments. Simply the ones that I felt captured Shivam and his smiles.

Happy Birthday Shivam

Shivam turns three today. I am so thankful to God to be able to see this day today. A couple of months ago, this was looking like an almost impossible dream.

Rewind back a few more months. In January, we thought of celebrating both Shivam's and Meera's birthday together this time. We had even talked to Mummy and Bapu and they also felt they might be able to make it by middle of May. Bundle Mummy-Bapu's anniversary and we had a triple impact party. We hadn't celebrated Shivam's birthday on a big scale till now and we thought this would be a perfect year to do so. Life was stable, work was stable, things were moving at a good pace, yada, yada...

But God had other things in his mind. Come March 19th, and all our plans were shattered and the theme changed to survival. But, as I said earlier, I am so thankful to God for allowing us to hold our precious little son on this day.

Tonight, as I was putting him to sleep (he sleeps on my bed, Urmila sleeps on his), I was hit by another wave of daddy love. He looked so small, so little, so vulnerable, I could help but hug him tighter and shower him with kisses. I placed my finger in his open palms and he wrapped his fingers around them, clinching his fist tight. I felt love and energy flowing through and this moment itched in my heart forever. It was a mental struggle to leave the bed and come share these moments and thoughts with everybody.

We debated a lot in the last few days on whether to celebrate his birthday or not. Although his counts are ok and he is generally well, he will be entering the "consolidation" phase on June 2nd. For the next two months, he will be undergoing severe chemotherapy and his counts will be near zero (if not zero). In the treatment schedule that we were given, it is mentioned that he may have 2-3 blood transfusions every week. Given these scenarios, even a slight bit of infection can be extremely dangerous for him and we felt it was not worth the risk. It was a tough call, but we made it. Hopefully, when Shivam reads this a few years from now, he will not be so mad at me for not celebrating his birthday.

Ms. Leah would be coming in the morning to start his birthday on a playful note. I have also placed his new tricycle (with a new fitting helmet of course) just in front of the stairs so that he can be surprised when he comes down in the morning with Bapu to make tea for everybody.

On a side note, we received 2 boxes to Kaju rolls (Cashew sweets) today. They were sent using Haldiram's online site. The problem is that Haldiram does not realize that they do not put the name of the sender. So, if you read this blog, if you have sent it, please stake your claim so that I can thank you when I gobble them down today.

I wanted to end this post today with a special message for Shivam. I found this poem here.

In all that you've accomplished
You've filled my heart with pride
Most important of all
It's who you are inside

My feelings for you
Comes from deep in my heart
And I miss you so much
Whenever we're apart

It's a real blessing
To have a son like you
Without you in my life
I don't know what I'd do

Happy Birthday my dear son...

The numbers game

I did not realize it's been almost a week since I last posted. Time sure flies when things are going good. And vice-versa.

Shivam had a blood test today in the morning. We decided not to use his port for this and instead use his arm for a poke. Before leaving, we also applied the "magic" cream (for numbing) so that the pain from the poke would be considerably lesser. Just before reaching the hospital, less than 1/2 mile from the gates, Shivam had a vomiting bout and soiled all his clothes. We reached the Hemonc clinic and they gave him a fresh change of clothes. His "diaper" bag was not prepared for such emergencies. Now it will be.

We told the nurse at the front desk that we are here for a blood test and would like the regular arm draw instead of the port access. She directed us to the regular clinic for that. There was a long wait and we got a pager. Shivam kept on bugging me on how the pager works and why his pager is not beeping and others are. 3 year olds can get tough with Why, Where, How questions.

Finally our pager buzzed and Shivam jumped of the couch and ran towards the door saying his number has finally come. Even though he knew we are here for a poke, the excitement of the pager was more and that propelled him towards the room where a very friendly and smiling technician was waiting for him. When she asked him where his magic cream was applied, he proudly showed his arms. But then he did a strange thing. He told the tech to poke him on his finger and not his arms. Why??? Because he sees me do my diabeties blood test and sees that I do not show any pain.

The tech complied and gave him a finger warmer. He cried a little bit when she removed the magic cream (cried for no reason). The poke was almost painless and the draw was very fast. We were done and we both raced to the car.

On the way back, we stopped at my office to say to my friends and Shivam's well wishers. Deanna gave him a a toy car and he is holding it like there is no other car in his world. Thanks Deanna.

We then stopped at Urmila's office and he played with her for a few moments. He started crying like a 1 year when we left saying he wants his mommy. It took me and Bapu a good 5 minutes and some strong threats to calm him down. I didn't know he loved his mommy's office so much. In the meantime, Urmila got a call from the hospital with the lab results and Shivam again passed with flying colors. YAY!!!

Back home. We reached around 12:30 PM and I took Shivam for his afternoon nap. We played with his new car for some time and finally we both slept.

He got up around 6 PM and we shut off his tubie for his chemo meds. Meera and Shivam had a small dance session where they both danced to some fast music CD given by his Kapil chachu. Meera got hungry and they all left down to eat their dinner. And I am here.

Thanks for all the support.

A month of celebrations

This month is a month of celebrations. A few days ago, it was Meera's birthday. May 21st was Bapu and Mummy's anniversary. Today Aloka shared the good news of her passing a super tough exam. Kamesh's double MBA celebration is tomorrow (Vaishu, I guess it's no longer a surprise party - Thanks to Nilesh). Shivam passed his blood work test with flying colors. He also has started eating some food by mouth. Today was murku eating day. Whew... I could list a few more, but you get the drift, right?

We are settling into a routine now. With Shivam being more energetic, happy and full of life, things seem to be moving in the right direction.

Shivam has become crazy for Ms. Leah and when she called today that she would not be able to make it for some urgent personal reason, he went ballistic. But it felt good to have a normal, cranky, screaming 3 year old.

Shivam's 3 year birthday is coming up and we already have a list of "presents" he wants for his birthday. I was surprised to see him articulate his wish list.

Meera pulled out Shivam's nose tube yesterday while they were playing and she caught him in an unguarded moment. Thursdays are heavy on chemo drugs and we had to rush to the emergency at 5 PM to get a new nose tube. The wait was long and we finally came back by 10 PM. Shivam is now extra cautious when Meera is around. It’s incredible to see the human mind in adaptation and action mode.

Next month, as I mentioned earlier, is the consolidation month. Actually, it's next month and the month after. These 2 are the heaviest months in terms of chemo. Hopefully, Shivam will recover enough to sustain the onslaught of the drugs and pokes.

Enjoy the long weekend!

Meera’s first birthday

Meera turns ONE today.

This last year has been an amazing journey with the new experience of raising two kids and working at the same time. I know lots of people do it, but it does not change the experience. If you think keeping up with one kid was tough, try having a second one. It doubles the pleasure and fun and quadruples the exhaustion. But, it’s very worth it in the end.

Incidentally, today also marks the completion of 2 months since Shivam got diagnosed with Leukemia.

Yesterday was one the busiest days for Shivam and Urmila. When both of them crashed late night, they were exhausted beyond imagination. The day started with Ms. Leah coming over to play with Shivam at 9 AM. They played untiringly till noon with Shivam going for his first round of sleep. Shivam is totally in awe of Ms. Leah and she is an equally amazing teacher and mentor.

After a good nap of around 3 hours, Shivam got up and was soon joined by Aniket for a play date. Aniket had brought 2 toy helicopters and they both ran around the house. This is where Urmila, the “power” mom comes into the picture. I was amazed to see her energy as she ran along with the kids, making sure they are safe and enjoying the games at the same time. She played legos with them. She made a full train set and drove trains with them. She ran beside them when they were cycling around the house. And the biggest challenge of all: How to keep Meera away who just wanted to be with Aniket all the time. Yes, it was a pleasure of see all 4 of them rolled into a ball moving, shouting and screaming with glee around the house. Aniket was fabulous with Shivam and contrary to his parents fears, he was gentle, kind and very understanding while playing with Shivam. Very well trained boy. And extremely smart like his parents.

Aniket left around 5:30 PM (after Anjan returned from his alleged “shopping trip”.). Soon Shilpa, Yuvraj and Jhanvi stopped by and Shivam and Meera again got busy with her. I was enjoying playing the devil’s advocate role and teaching the kids all wrong things and Urmila and Shilpa were trying to undo those them. By mistake, I opened the front doors and then both kids wanted to go out for a walk. This was a challenge as Shivam is not supposed to go under sun while his chemo treatment is on. After some superb delay tactics from Urmila, it was finally safe to take the kids out. On the way, Shivam met his Rutwick chachu who was coming from a whole day of the cricket field. The idea of walking was completely abandoned by Shivam at this point and he wanted a ride back with his chachu. We came back and everybody took a moment to rest.

Late evening, Girish, June, her mom and Rohan came over to visit Shivam. Shivam and Meera enjoyed the little baby and Shivam acted very matured with Rohan offering him toys and making sounds to keep him entertained. By 10:30 PM, Shivam was absolutely worn out and crashed in Urmila’s arms. She took him to bed and he slept immediately.

Mummy had a hard day also trying to keep up with feeding everybody and supplying a constant stream of tea and snacks. She, again, is an remarkable women with boundless energy. Like mother, like grandma.

Somebody asked on my previous post about Kaju masala. It’s hard to explain the “taste” over text, but in short, it’s cashew nuts soaked and simmered in rich gravy of tomato paste, finely grinded cashews, almonds and other nuts, milk, and tons of Indian spices. Unfortunately, it’s not available in most Indian restaurants because of the expensive nature of it’s ingredients. It’s generally eaten with some Indian bread (like naan or roti). Phulka again is a traditional Indian bread not generally served in restaurants. But if you bribe my mother-in-law enough, maybe she will make it for you :-)

A whiff of normalcy

Last evening, the sweet, rich, flavorful aroma of Kaju Masala filled the home. We came back from a huge costco trip and everybody was hungry. She quickly made phulka’s and kaju masala in just 5 mins. It was the best kaju masala I have ever tasted.

Shivam was sleeping and had gone up to his room. But even he came down and wanted to have a bite of roti and kaju masala!!! He sat in Urmila's lap, asked her to read a book to him, and took one bite from me and then he pulled the plate next to him. He had another bite and then one more. Meera also wanted to join the fun and she sat next to me and happily munched on the food, dirtying her mouth, hair and clothes in the process.

For a moment, it felt like we were back to being a normal family. A family sitting together, having a fun and laughter filled moment, without having to worry about nausea and other things.

And the credit for that moment goes to Urmila’s parents. I must have done something good in my previous life’s to get in-laws like them. Actually, I have never considered them my in-laws. I have always thought of them as my own parents. And, they have selflessly been there with us on each step of our life. Good times or bad times. They have been our rock pillar of support. They have never interfered in our lives, but at the same time, gently and smartly guiding us through it. They have exemplified the true meaning of being a parent. Loving and never scolding and excepting each and every fault of their children.

I am so thankful to God for having them here.

Cruise Control at 45 and a minor road bump

Last week was mostly spent in recovering. Shivam's stomach is now much more stable, although he still has loose motions and daily vomits. We have stabalized his feed at 45. Any increase over that resulted in excessive throwing up. Zofran and Ativan (anti-nausea meds) are his best friends right now. He is getting more strength in his legs and is almost able to walk straight without holding hands.

Last night we had to rush into emergency to get Shivam's nose tube fixed. Around 6, just before his chemo time, his tube refused to flush and I could not even push air into it. I called the doctor on call and she recommended we go to emergency and get this fixed. It turned out that I needed to push such blockages with more force than I was applying.

Today is another big chemo day. He would be getting another dose of Methotextrate (by mouth) in addition to Metcaptopurine. Evening, I guess would be full of nauseas but we will be prepared.

Day 53: A couple of smiles

The sweet sound of laughter filled our house again today. Shivam found one of his old "gun" today and was chasing everybody with it. Even Meera joined in the fun and was following Shivam like a lamb. Sort of. She was actually following his nose tube and trying to pull it off.

Paul and his wife visited us for lunch today and it was very nice to feel normal again. In the evening Mrigs visited us and Shivam enjoyed playing and listening stories with her.

Gino, Urmila's boss is truly one of the nicest people we have met. The understanding and compassion shown by him is amazing. Sometimes we felt that good people are few and rare to find. These hard times have proven us wrong. And I am so happy to be proven wrong here. The amount of support that has been pouring in is almost overwhelming.

Aloka and Tulika, thanks a million times to you and your Mom and her friends for the continuous prayers for Shivam. We are so grateful to God for having friends like you. Shivam and Meera always keep on fighting on who will ride the toy cycle you guys loaned us.

I can write pages over pages on the help and love and support we have received over these last 53 days. I feel I have become more matured and understanding now. Life is too small and precious to worry about little things. Remember to hug your child more tighter every night. They don't need expensive toys. Kiss them, love them. That's all they need. As Manju didi once told me a couple of weeks ago: It's easy to father a child, it's very hard to truly become the father. And I completely agree.

Consolidation vs. Maintenance

Yesterday, or rather a few days ago, we were confused on Shivam's treatment plan. Dr. Rabi and Dr. Mathews were mentioning that Shivam was still too weak to go to aggressive chemo treatment plan (consolidation) and the new doctors that took over last Sunday mentioned that he will go onto consolidation month. Basically, in consolidation, he gets extensive treatment for a month (almost daily to the hospital for a back or spinal poke) and in maintenance, it much lighter (mostly at home). Yesterday, we went to the hospital in anticipation of starting the consolidation phase. We were scared and confused on the conflicting directions we were getting.

When we reached the hospital we meet Tina and she explained that Shivam will be going on maintenance phase as originally planned by Dr. Rabi Hanna. He got his blood drawn for testes and the numbers looked good enough for a spinal top (or lumber puncture) where a chemo drug was injected into his spine. He also got another chemo (vincristine) via the port. These drugs make him extremely tired and sleepy and we all came back home with the new schedule and slept.

I soon realized that in our "rush" to reach back home, I had forgotten to pick his new medications (prednisolone, methotrexate and mercaptopurine) from the pharmacy. I again went back to the hospital and got them. By the time we came back (the traffic on 520 was horrible both ways), it was too late to give the medications. We had talked to Tina earlier about this delay and she mentioned that it was OK to not give the medicines in the night and start it in the morning.

Today morning started with the customary nausea, throwing up and diarrhea. After things settled down a bit, we gave him his 4-5 morning meds and he seemed to have kept them in. So far, so good...

This month should be a little lighter as his body slowly recovers from the trauma of last month. His counts will be still low (although not critically low) and we will have to exercise caution while exposing him. But all in all, this week we have been able to catch on some sleep and some lighter moments.

Ding-ding: Next round starts

The last 2 days have been mostly quiet. All of us are resting a lot and recovering our energy for the next storm.

Shivam is scheduled for another round of intensive chemotherapy starting tomorrow. This will continue for the next 5 days. We will know more about the exact treatment plan when we meet the doctors.

Ms. Leah stopped by last night and Shivam lit up when he saw her. She played with him and got him a lot of pictures she had taken when she visited him in the hospital. She has promised to visit him again today.

Matrix Reloaded was actually able to hold Shivam's attention for the full 2 hours. We have almost fully weaned him off the pain and nausea medicines. Almost. Since he was on them for almost a month, it will take around a week to complete stop them.

More updates sometime tomorrow night.

Home run!!!

Yes, we are back!!! After a month of fight, we are back to the base.

Shivam was able to sustain a feed of 40 ml/hour and the doctors decided to let us go. Lots of details and other stuff but the key is that we are back home.

Thanks agaian to everybody for love, wishes and prayers during this extremely hard time.

Dress rehearsal today

Shivam got up at 10 AM as I reached back with Bapu, Mummy and Meera. Urmila also got a chance to sleep for a few hours in the morning. The morning started a little rough with a few vomits, but that’s ok. Around 10:30 I got a call from Ms. Leah, Shivam’s teacher at Bright Horizons. She wanted to come and meet Shivam, He was elated to hear the news. Around 11, he went out for a small walk with mama and Bapu. Ms. Leah came around 11:30 and we all met in the lobby of 3rd floor where Shivam was riding his bicycle. Vaishu was already in the room when we reached and she had brought some heavenly delicious cookies which I gobbled down. Thanks Vaishu.

We came back to the room and Shivam immediately forgot the entire world around him and immersed into the lovely world of paints and arts and crafts created by Ms. Leah. After playing in the room for some time, Ms. Leah suggested that we go down to the big playroom and spend time there. Shivam loved it and spent hours there doing crafts and paints and walking and strolling in the bright sunlit open play yard with her. Shivam even does not want us when he is around Ms. Leah. Such is her magic, her love, her affection. She is truly a wonderful person with goodness oozing out her heart. We are so fortunate to have her guide Shivam through his hard time.

Around 2:30 PM, she sang him soft songs and put him to sleep. Even I went to sleep along with Meera occupying half my bed. Girish and June came and Urmila and Bapu went with them to the family area while Mummy guarded all the sleeping folks in the room.

Now we come to the most interesting part of the day. The nurse told us that we can take Shivam out for a few hours outside. Out of the hospital. Wherever we want!!! We were so excited that we almost shook and woke Shivam up around 4:30 in the evening and bundled him in the car and went to home for a trial run. For a dress rehearsal of sorts. Shivam loved the drive home. He enjoyed the sun, the boats on the lake, the cars, the hustle bustle of life on the roads. We reached home and he wanted to go into each room and check them out. As if he was going down a memory lane and bringing back everything to life. Oh, it was so beautiful to see him get excited to see his room, his bed, his toys. Meera, as a faithful sister, was following him all over and wanted the exact same things he was touching. Life, for us, stood still to see our kids acting normally, to see our family together once again. These few moments are itched into our minds forever.

Rutwick, Shilpa and Saina came over around 6 PM and Shivam enjoyed a quality hour with them. Like Cinderella, Shivam had a 8 PM deadline to meet and left around 7:15 PM and barely made it in time. On the return trip, Shivam enjoyed the complete alphabet soup that Urmila played with him in the car.

He is getting his meds right now and watching Spiderman 3 which Anjan had brought over yesterday.

To sum up today, I remember a quote (which I googled to get the exact text): Success is the sum of small efforts, repeated day in and day out.

The countdown begins...

At Children's hospital, the doctors rotate every 2 weeks. What it means that we get to meet a new team of attending doctors, fellows and residents every 2 weeks. We met Dr. Parks and her team the first 2 weeks we were here. Next we had Dr. Matthews and her team. Yesterday, Dr. Jim Olsen and his team started. I don't wish to see another team this visit. And the doctors also agree. They have had enough of us :-)

The first step the team of doctors took was to stop all his antibiotics! Yes, he is now officially off antibiotics. And he seems to be doing just fine. The next step was to stop his morphine drip. But there is a caveat. Since he has been on morphine for almost a month now, he is almost addicted to it. And we saw it first hand last night. The doctors have prescribed an oral pain killer to be given on a regular basis till his body gets used to being without morphine. We are still going slow on his feed increase. He still vomits few times a day and we just do not want to risk going fast and him slipping back a day.

Yesterday, Shivam freaked out in the playroom. He made Urmila and Bapu run around him for an hour and then came back to the room for some more meds. Then he wanted me to join them. We had a good time again for an hour or so and then he was totally exhausted. Amit and Pallavi stopped by and he fell asleep while they were there. In the evening his port-a-cath got reaccessed (the complete tubing is changed once every week to avoid the risk of infection). Shivam was very happy to see Anjan, Paramita and Aniket in the evening and he played with them. Anjan is the best photographer I have seen (you can see his fabulous work of art at http://anjandas.smugmug.com/) and he never travels anywhere without his super cool bag of camera and lenses. Yesterday, though, Anjan almost felt naked WITHOUT his DSLR. He gave me lengthy explanations on why his point-and-shoot camera is a very worthy to be carried by him. And he went on and on. But in the end, a P&S is a P&S. It's for us normal folks and for kids like Aniket and Shivam. Not for a serious photographer like Anjan.

Well, today seems to have started on a good start. Shivam got up at 4 AM and woke Urmila up. She played with him till 5:30 AM and then I sort of took over. We watched the "Cars" movie a 100th time and then I promised him Bapu, Ma and Meera if he goes to sleep. And then I left for home. Let's hope he lets Urmila have a couple hours of sleep while I came back...

PS: Anjan, I hope you don't mind. You are a very close friend and I hope I have the rights to trouble you like this :-)

Is that light at the end of the tunnel?

We have been slowly climbing the mountain, navigating the dark tunnel. We can almost see the mountain top, the light at the end of the tunnel.

Shivam re-took his first steps today. He walked ten long steps. The world stood still while he tried to balance himself. In a different world, Meera also took her first steps. We missed them. But now she shows off her new found walking freedom to Urmila when ever they meet.

Shivam's morphine is being reduced 1 unit everyday. His infant formula is being increased 5 ml every day. His TPN and Lipids are being reduced too. All in all, good signs. He does throw up a few times a day, but that's expected. Sort of.

Shivam is loving to ride his tricycle around the floor. Here are some moments captured yesterday and today.

You tell us

They say a picture is worth 1000 words. Here are today's 6000 words.

 

Shivam's first day out

A lot has happened in the last 48 hours. I have been meaning to write the "detailed" story and got lazy.

Yesterday started with Shivam getting off isolation. Sounds nothing, right? But it meant a lot. It meant we could get out of the room, move in the corridors, go to the playroom, etc., etc. Of course, we did not utilize our new found freedom immediately. Shivam did have a little more energy and he sat up and played for a few hours.  Second major achievement was giving Shivam a bath. After 24 days!!! Wow. Cool. It was a bit of struggle and took us 2 hours to convince him. And still we had to "drag" him to the bathroom.

On the flip side, he was still vomiting a bit so the docs did not start him on feeding. Another day lost.

Today,  Urmila prepped up the morning with couple of toy cars in the room. As soon as Shivam got up, he saw them and wanted to go outside. Soon Bapu, Mummy and Meera came over and we had a small family time together.  Meera wanted to jump on Shivam's bed and he wanted her off. It was fun to see them fight :-)

Shivam then wanted to ride his toy car and we bowed in front of his screaming. Urmila spent almost an hour wandering the corridors before coming back. Sometime during the trip, the nurse started his pedialyte feed and

And then he wanted to go out again. Immediately. This time, the whole family went out for a stroll. Meera also got her own car and they both enjoyed these moments together. So did we.

After this long and tiring excursion, Shivam got extremely tired and almost fell asleep immediately.  The evening was a little unpleasant with Shivam throwing up a few times and then again falling back to sleep. Shivam had a few visitors in the evening. Kamesh, Vaishu, Rutwick and Shilpa dropped by. Shivam was happy to see some other faces than ours. But he was a little nauseated to fully enjoy their visit.

Overall, the doctors are slow but steady progress.

Oh, I almost forgot. We got "promoted" (aka kicked out) to a shared room. This is the same room where Zoey was moved to when Shivam took over her room. I consider this a promotion as Zoey very soon got discharged after moving into that room.

The doctor also told us about the discharge criterion. It's a long list and the estimated time frame is another week to 10 days. That would make this trip almost 6 weeks in the hospital. Yay!!!

Some backfires, but the car is moving forward

Today was definitely a day where things moved forward. It was a day full of excitement for Shivam. Ms. Leah, his teacher from Bright Horizons, stopped by and brought some photos of his school times with his friends. She read him stories and played with him. She sang to him and he loved every moment of it.

The day started with some slipping back. The doctors yesterday started infant formula via feeding tube to start exercising his stomach. The initial dose was 5 ml/hour. Sometime in the night it was bumped to 10 ml and in morning to 15 ml. This threw his balance off and he started to vomit like crazy. The dose was brought down to 10 ml, but he continued to throw up. The doctors then ordered the dosage to stop completely. The new plan is to restart tomorrow at 5 ml/hour and wait a full 24 hours before bumping it. In essence, we lost 2 days in the over eagerness to get things right.

After his feeding tube was shut off in the afternoon, we all went to  sleep and got up fresh at 5:30 PM. Shivam asked us to make him sit and he wanted to do some paper cutting. My imaginative skills stop short at holding a full sheet straight and allowing him to cut. But Urmila became very creative and mommy and son played for over an hour cutting faces in paper and making boats and what not. Here are some of those moments captured on camera.

 

After a big hour of fun with mommy, it was time for Daddy to step in. Shivam wanted to get up and sit in my lap. He actually wanted to get away from his bed. We sat on the sofa and played silly with play dough. Again, a picture is worth thousand words.

He got tired after all this excitement and wanted to go back to his bed. We were able to make him wear his jammies (a big win). You can see him with his jammies, mom's boat and his beloved scissors.

Overall, an exciting day!!!

Another small step

Shivam managed to keep high fevers at bay yesterday and today. He is still having low grade fevers continuously but that's less concerning for the doctors.

Shivam lost 2 things today. One, the peripheral IV on his hand was taken off. That was a big relief as now he can use both his hands to hold objects and play. Second, his big fat NG tube was replaced with a small, thin feeding tube. Unfortunately, this will remain for some time to come.

Meera, Ma and Bapu came to visit us today. I got up early (yeah 5:45 AM) and went to pick them up. Shivam spent some quality time with them.

We had an unexpected visitor today. My old friend Nataraj dropped by to visit Shivam from East coast. It was a pleasant surprise to see Suresh and Sampath also come and visit us. Shivam got a remote control car and Meera got a teddy bear. It really touched our heart to see Nataraj take a 9 hour trip just to spend 1/2 hour with Shivam.

Finally, I wanted to end this post with some photos taken by Shivam. Yes, he took these photos all by himself (using the camera brought by his Kapil chachu).

Happy days will be here again

Friday, April 25th, 2008: Seattle: 9:00 AM: Shivam just got off oxygen monitoring. That's a very big achievement. His pneumonia looks to be on a downhill path. Fevers are still there. Though the intensity is lesser. Tummy pain is still there. Again, intensity is less. than before. It's still bloated, but less than before. NG tube (to drain out stomach's content via nose) is still there, but it's now on gravity and not on suction pump.

The doctor has also ordered a complete CT scan again to figure out where the little guy stands.

Here is a nice photo sent by Rutwick and Shilpa taken 2 weeks before Shivam was diagnosed with Leukemia.

Reflection: On cancer and me

Going back a few decades, my mother was diagnosed with cancer when I was a little boy. I saw that horror through the eyes of a young boy who saw his Mom going through immense pain. I still have vivid memories of the pain she went through. The doctors had given up hope on her. This was in late 1970's in India and the treatment options were not as advanced then. She was diagnosed with stage 4 cancer. But it was her sheer will power that brought her out of that illness. She fought through radiation therapy, chemo therapy and God knows what else. I do remember that they use to stuff (literally stuff) with 1/2 kg butter cubes and litres of cold milk just before radiation and she use to puke everything out within 1/2 hour. Stuff that was boiling out. Such was the power of radiation. When I talk to my family about how she had such strong will power, they told me she wanted to see me settled down. After 18 years of cancer, she passed away peacefully after I got married and settled down. She led a very happy, satisfied and content life.

Now I am again reliving that nightmare as a parent. My little boy is going through immense pain and I can again just sit and watch helplessly. Actually, not helplessly. I can hold his hand and carry him him in my arms through this. I have more strength this time. I remember a very nice poetry that someone once sent to me. You can read it here.

Footprints in the Sand

One night I dreamed I was walking along the beach with the Lord.
Many scenes from my life flashed across the sky.
In each scene I noticed footprints in the sand.
Sometimes there were two sets of footprints,
other times there were one set of footprints.

This bothered me because I noticed
that during the low periods of my life,
when I was suffering from
anguish, sorrow or defeat,
I could see only one set of footprints.

So I said to the Lord,
"You promised me Lord,
that if I followed you,
you would walk with me always.
But I have noticed that during
the most trying periods of my life
there have only been one
set of footprints in the sand.
Why, when I needed you most,
you have not been there for me?"

The Lord replied,
"The times when you have
seen only one set of footprints in the sand,
is when I carried you."

Mary Stevenson

Keep the positive energy going

I know you all have been anxiously waiting for an update on Shivam's situation. So are we. So far it's been wait and watch for us too. Believe me, spending 24 hours, 7 days a week in that small room with a sick baby is not easy on our minds.

As soon as I have something good to share, I will post it here. Till then, let's keep all the positive energy up and get the momentum going to get the kiddo out of here.

No change

Shivam's condition has not improved at all since the last update. I will next update you all when there is something to report.

Doctors suspect infection in the gut

The doctors suspect that his gut has infection. Although they did not find any bacterias, but they found a lot of WBC which is an indication of an ongoing fight.

At this point, there is nothing we can do (medicine wise) and we have to let his body fight it out. His fevers are now touching 104 degrees.

No change

Good morning world. No change in Shivam's situation to report.

• Still having consistent high fevers.
• Still having belly aches.
• No report back from the lab yet.
• No friday chemotherapy given.

Just gave him another pain bolus and tylenol. It's wait and watch yet again.

Soldier still in retreat mode

Shivam's condition worsened over the last 24 hours. His belly pain has increased and his fever is now almost constant at 103. Tylenol brings it down for an hour and it goes up again after that.

This was quite concerning for the doctors and Shivam was taken into surgery (he is currently there). He was given another round of platelets around 2 AM in the morning for this surgery. This surgery is to remove a sample of the fluid from the belly and test it to find out what it is.

The nerve wracking wait begins...

The soldier took two steps back

Last night was very rough for Shivam. His fever was constantly high and he developed extreme stomach pain. The nurses and the doctors increased his morphane drip and give him extra shots of the same. The pain would go down for an hour and then come back. Shivam continues to get massage therapy 4 times a day for his lungs.

Doctors stopped by in the morning and were quite concerned about his fever. They did a bunch of more blood tests for liver and other organ functions and that came out normal. The fact that he has fever and has stomach pain was concerning and the surgeons were called. Heamonc doctors were of the opinion that the stationary water in his belly was getting infected.

His platelets count again fell and he got another transfer today.

The surgeons came and touched him and poked him (for his good ofcourse). They also examined the xrays and CT scans. They did not feel the need for a surgery right now.

But he is very tired and in pain. I am sure he will get better.

To climb steep hills requires a slow pace at first

As Shakespeare said, "To climb steep hills requires a slow pace at first."

Our Hero is taking slow but sure steps towards the goal. He is now off oxygen for over 24 hours and is breathing himself. He is more active and we are loving his crankiness every moment. I even scolded him so that he could cry and open his lungs. Bad me.

Other improvements include him turning on the bed almost himself. He gets stuck in the myriad of tubes and IV's and then he calls for help. He also listened to a couple of stories and played with Mr. Potato head.

His WBC and ANC showed a minor increase today. I had hoped for a larger bump, but I guess I got too greedy. The good thing is that they increased. Does not matter if it was small.

On the flip side, his red blood cells went to a critical level. The doctor ordered blood transfusion. It should be arriving soon from Puget Sound Blood Center and hopefully once he gets it, he will become more playful.

Urmila was feeling very tired and sick today so we sent her home to rest and charge up by spending some time with Meera and Mummy. Hopefully, she would be back by 7 or 8.

Last night, Shivam said a very complex statement for his current state. Here is the translated version: "I want to meet my uncle who has a motorbike and who gave me a motorbike." It took me few minutes to understand and decipher his words and out popped Nilesh's name. I called him immediately and asked him to come in the morning. Shivam spent almost an hour with him and Aloka and was happy (and tired).

Right now, he is very tired (low RBC) and has watery eyes. But I see this as his fight with pneumonia and I am sure he will come out victorious.

Bless him...

When the Going Gets Tough, the Tough Get Going!

Shivam's numbers showed dramatic improvement today. His WBC cell count is UP, his ANC (fighter cells) are UP, his potassium is STABLE, his CO2 levels are LOW and all other numbers were good too. The only exception was the platelet count and the doctor ordered another platelet transfusion.

All the prayers for friends, family and well wishers did help us a lot. We find so much strength in the positive energy you guys share with us. We read and re-read all the comments posted on the blog and tears of joy flow from our eyes on the strength and love they provide us.

Shivam has been moderately active from the morning. He played, he prayed with me, he helped the nurse clean up his tubes and spoke and talked with us. Mausiji got him some toys to play with and he is enjoying it.

We are again amazed and touched by the sheer love and genorosity of people whom we don't even know. Your prayers and love will pull us through.

Here are some pictures (taken from the phone yesterday). I really should go out and buy one of those small sleek cameras you see in costco.