Monday, June 2, 2008

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.

4 comments:

Anonymous said...

I am a friend of Urmila from school. She is a very peaceful person & I see the same in you. God will hear all our prays put together & Shivam will come back home from all this to be one fine fit kid like all ours! Hats off to you both & may God keep your strenghth & courage this way till he is back to normal.

Anonymous said...

Shivam will come out of this with flying colors. Have faith in God and I'm sure our prayers will be answered.

God Bless you dear.

What G Says said...

Dearest Urmila & Nikhil
This is Gigi. I remember the great time we had when I visited you guys in Boston way back in 2001. You guys are a great amazing inspiration with humungous strength and this IS what Shivam uses to fight through this period.
I love you guys and know that I am there with all my strength & love.

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