Thank You All

A post dedicated to all of you who have shown so much love and support. Though phone calls sometimes go unanswered, every call and message is appreciated a lot! Rohan of course loves all the toys and we are having a great time playing with everything - from Go Fish, to Thomas, to still more Thomas, to more and more Thomas! Movies, magic, masti

Thanks again for keeping us in your thoughts and prayers.

Double Whammy, but some GREAT news too

What a day so far. Rohan had radiation session number 5, followed by chemo session number 2. The radiation has done quite a number on him, and he was nauseous all morning. He did great at the radiation session inspite of not getting any anaesthesia. Stayed pretty still and got his "pictures" taken. What a big boy! We then went to childrens for chemo, and Dr G finally saw us and confirmed that his histology report was good!!! Yippee Yay! Finally some good news. The nurses had some Thomas stuff (but of course) ready for him, and we were out of there in about 2 hours. He is passed out now, has zero appetite, but i hope he feels better when he wakes up. Hopefully his last radiation session will be done tomorrow, and we will not have to go anymore to the "hospidal with the turdles" in it as we know Emory.

Im a big boy - but its ok to be a baby sometimes

I cant believe its been 2 weeks since R's surgery. He is coping quite well, and has had one chemo session and 3 days of radiation. At today's radiation session we spent 30 minutes prior to the session walking around the corridors, looking at animal crackers in the vending machine, counting turtles in a fish tank, and coloring thomas the train pictures. R fusses to have the anaeshesia mask on him, but luckily he goes down in a few seconds. He came to as soon as the mask was removed, which is quite unusual i am told by the Drs. He woke up crying that he wanted to go get animal crackers out of the vending machine. He wolfed down a big box of cheerios, and milk and was back to normal in a few mins. We spent the rest of the day playing, going to the lie-vwy (library) and the park. Half way through with chemo. BTW: This quote is courtesy Rohan on the way to radiation, and i think it really applies to the way all of us are feeling right now - trying to hold on, but feel kind of like helpless babies at times.

Chicken Nuggets

Raditation day 2. A bit wiser about the effects of not medicating with Zofran - Rohan had a dose before radiation. He came to and started howling, and saying something that no one could understand. Finally we got it! Chicken Nuggets was the plaintive wail! Hunger striking, a good sign! Went straight to Chick Fil-A. Downed some nuggets, hash browns and milk - yum and ready to face the day now. Rohan is in good spirits, and we went to the library and Jaya's house and he did great.

Radiation

Ok - today is session 1 of radiation. Wilms protocol calls for 6 doses of radiation, and rohans tummy looks like a map of hidden treasure with X's and Circles all over. The internet is a curse at times - too much reading, too much info and my head is swimming with facts that i hope i never have to witness. Radiation can cause sores?! In the mouth and esophagus???!! yikes. Anyhoo - made the trip across town in peak traffic to emory, waited in 2 different rooms, BP, HR etc taken and then Ro had to be put to sleep using a face mask. Oh boy - he kicked and fought, but was finally out. The radiation itself is just a couple of minutes. He was pretty loopy and sick all the way home, but a dose of zofran at home took care of the nausea. My fault for not giving him any before we got to the hospital - lesson learned.. You Dont Mess With the Zofran

The next couple of days

Day of surgery was a haze. Rohan covered in tubes, pretty much sleeping all day due to heavy morphine doses. He spent the night in the ICU. The next day (May 7th) we wnt back home - i mean the regular ward, but he is still pretty sleepy and tired and gets morphine every two hours. Nana and Siddu mama came to Atlanta. That night was crazy - he screamed and kicked and ripped out 2 IV sites, which luckily were not being used. The next morning the catheter came out. Yay! Rohan also had to take some baby steps and made it out of bed into a chair. Im sure it was painful, but he didnt complain. No food or drink yet, but he is starting to think about things to eat. May 8th the surgeon came by in the morning and said his nasal tube could come out. Yay yay yay. That was bugging him for a bit. Once out, Rohan was back to being chirpy. Still no food or drink, but he is happy its out!
May 9th - Jello, juice!!! Yummmmmmmm. No throw up so hes keeping it down quite well. ROhan is walking down the hall ways, and looks like he is ready to rip out his last IV and run!
May 10th - Happy MOthers day! Who would have thought that the best mothers day present would be a bowel movement!!!! Rohan is ready for food. Of course his fast was broken with the best food on the planet - Goldfish! (Thanks Jaya) followed by eggs, pancakes, milk etc etc. And he is holding it down fantastically!
May 11th - Yayayayay - we are going home. The last IV is out! No more Pole following Rohan. Discharged and came back home in the AM. Rohan is recovering very well from surgery and bouncing all over the place.
May 12th - Kumar thatha and Kamakshi paati land in Atl from Chennai. So much excitement! So many people. So many toys! What surgery??? Is something supposed to hurt????
May 13th - Docs confirm that he has stage III cancer -- not stage II as we were originally suspecting. Requires one additional chemo drug, and radiation :(((( We had chemo day 1 today, and ROhan got a dose of vincristine and dactinomycin via his port. He didnt cry at all, and was distracted by a book, or maybe it was Thomas. Did pretty well the rest of the day. Medicating at home is a PAIN and he spits out everything.

Im not want that yucky stuff

It's good to talk to your kids about what's happening they say. Yeah - easier said than done. HOw do you explain something to a 3 year old when you have no idea what to say? Any hoo - my attempt to explain surgery to R was - "youre going to sleep for a little while, and the doctor is going to get some yucky stuff out of your tummy" i said. Im not want that yucky stuff Mommy said R. None of us do baby, but we were given it anyway, and its time to get it out. R's surgery was supposed to take 3 hours. He was wheeled away from the room at 7.15 AM. A and I went down with him, and he told the nurses that his name is "Mister Wohan Kumar". Many laughs from the nurses, many tears from me. Finally went into surgery, and the waiting game began. They also put a "port-a-cath" in his chest during the surgery, in addition to taking out his left kidney. The Port will help with the chemo later. Finally at 11.45 AM the surgeon came to the room, and told us they had successfully removed the kidney, and a few surrounding lymph nodes, and that R was in recovery. Finally saw him in ICU, and i could barely make out his little form - buried in wires, IV's, and tubes. Heartbreaking, but at least we know the yucky stuff is somewhat out.

Topsy Turvy

Ok - the cancer word is starting to sink in. Made a quick stop at home to gather some clothes etc. CT scan scheduled for the afternoon, and of course that means no food for R. Luckily children's has some fun toys, books and computers to keep him occupied. No one can believe the news - came completely by shock. Grandparents are reeling and making plans to fly to atl asap. By the afternoon, R has consumed some contrast liquid, has an IV going, and CT confirms a large left kidney, but hopefully no spread to any other organs. Surgery scheduled for 7.30 AM tomorrow. Can this all be happening so quickly?? Somebody pinch me - is this a nightmare?? I thought the little tummy was due to too much "soul food" at Ms Wanda's!
Couldnt have made it through the day without all the support from great pals! Thank you guys and gals so much - you know who you are :)

Whatcha Say????!!???

Took the AM off to take R to the Doc. All looks well, and then the doc checked his swollen tummy. The doc thinks it maybe a swollen spleen, but suspects its not serious. She recommended an ultrasound that afternoon at Children's Scottish Rite. My immediate worry is how to keep this hungry kid away from food or water till the ultrasound ends at 3 PM. Oh well - many Thomas the train and Pingu videos later, we are at the hospital and ready for the US. Wait for the tech. Wait for the doc. Doc says the spleen looks fine, but there is a tumor on the kidney. What?? When?? What do you mean i ask? Of course she cant speak to me, so i have to wait for the pediatrician to talk to the doc and call me. 3.30 PM now, Rohan freaking out, my head is starting to spin. Doc calls me and advises me to get admitted to the hospital and talk to Dr H. Head is still swimming, and finally meet with Doc H at 5 PM. It looks like Wilms tumor she tells me - Left Kidney is totally taken over by a tumor. Kidney needs to be removed, chemo, and the dreaded word - Cancer! Whatcha say????!!???? I can hardly speak - A is traveling, but takes the last plane back to Atl.

Happy Birthday!

Happy 3rd birthday! We had a low key day, as R is down with a cold and his birthday party was canceled. Spent the evening with Jaya's family (what better way to celebrate!) and J commented that his tummy looked a little big. Oh well - i have his 3rd year wellness visit to the Ped tomorrow, so will check it out then. Fun evening spent with the girls, eating, playing legos, face painting. Happy Birthday to you!