Life changer

April 2011

Blood in the urine. I thought it was just the after effect of recurrent urinary infections since March. Yet since I am the person who calls the doctor’s office for everything I made the call. They asked me to come in, took a urine sample, sent it for culture and said the same thing. An UTI and loaded me up with more antibiotics.  Two days after the visit I get a call from my OB’s office asking me to see a urologist ‘just in case’, since I had recurrent microscopic blood in my urine. So the date was fixed May 11,2011. I went about everything else in my life in a normal way.

May 11, 2011

I met Dr. D. Never did I know he would play such a important role in my life. He was uber nice. He took an urine sample, said I had no blood nor infection and that everything has cleared up. He felt that the blood back in April could have been from an unhealed UTI. He felt since I was so young, had no other risk factors he did not want to do any other tests. He words were “if it was my wife now, I wouldn’t do anything further too”. I felt good. He did however mention that if I were to see blood in my urine again (technical term is gross hematuria) I should come back. All was well.

May 16, 2011

Blood in the urine again. Entire urine tainted with blood. My first thought was some kind of kidney issue maybe, kidney stoned etc. No other pain, just mild occasional cramping, which a women often gets in a month so I never gave it much thought. I called Dr. D, just as he told me. He asked me to come in, the only appointment he had was May 18, 2011. I did not think too much about it as the blood stopped by the afternoon. I even debated cancelling the appointment, yet I am not that kind of a personJ. Just love the doctors.:)

May 18, 2011

I went in, he took an urine sample, again no blood. He however said he needed to do a cystoscopy.  I had no idea what it was, I was under the impression he was going to do a ultrasound or something to look at the kidneys. It was not a pleasant experience. If you google cystoscopy you can know all about it. I was lying with thoughts racing through my head, not knowing what to expect, and I hear him say “Oh, I see it”.  He then removed the equipment from me and said “You young lady have bladder cancer”. My mind just went blank, eyes started to well up.

I then vaguely remember him asking me if I want to see it, and I said Yes. He hooked up a monitor on which I could see and showed it to me. That was the first time I saw IT. It was like a sea creature,  like sea algae and it looked HUGE. I had no clue what to think. I was lying on the doctors table with tears flowing like a water fall.

Dr. D then said, get dressed, call your husband, I will talk to him. I remember getting dressed, calling A, trying to get words out through all the choking and tears, I could hear him tear up. I then handed the phone over to Dr. D. He told A the same things he told me.  I am quoting Dr. D. “I have your beautiful wife sitting in front of me and I just told her she has bladder cancer. How do I know without a biopsy, I know because it looks like a textbook tumor. But I do not want you to worry. I am going to go in and remove it, and then she would need check ups. She is going to live a long life with you and you guys are going to have a lot more children”.

I left…life changed.

I went to my office, cried in my partner’s office. I left work and headed home. I saw A and cried even more. We gathered ourselves and went to Little A’s school to pick him up. Evening progressed, it was all a haze. When the little one is around there is not much time for sulking, we made dinner, gave him a bath and it was nighttime.  After we put Little A to bed, we both broke down. In a way it was good, your head gets clear. We hit the sack, preparing for the rest of our lives, as it has just changed in a way that we could never imagine.

The next few days consisted of telling the family. It was hard. Tempers flew, how can the doctor just tell me, why did he not do a biopsy, maybe we need a second opinion. All thoughts originated from a place of deep caring, yet it made the days harder, as we all needed answers, and we all had none. My mom had just left to India two weeks prior and she made plans to return.  We have lot of known doctors in the family, calls flew left right and center. More thoughts, more confusions.  I stayed away from google, which was very hard for me, but I thought it was pointless unless I knew that I was dealing it.

It was hard to keep my head in the game. The next stage was a CT scan to determine if the cancer had spread. That was on May 24, 2011. The days between the 18th and the 24th, were some of the worst days of my life.

May 24, 2011

Day of the CT scan. I was all nerves. Our dearest family friend, P (she is a physician) had come with her two year old daughter T, to help us through the appointments.  She arrived the previous day night. The day of the scan, we sent Little A to the daycare, and the rest of us headed to the hospital. The scan was done, yet the report would not be ready till the next day. So one more day of torturous wait. Talks about the location of it being an issue were discussed with various doctors. All the possible worst case scenarios ran though my head.  I had to wait till 4PM the next day to meet the doctor and know the situation.

May 25, 2011

We ALL went to the doctor’s office. It looked more like a picnic. A, Little A, P, Little T and myself.  We all barged into his office, Dr. D looked a little shaken up, but he adjusted saying he has three kids himself. He then explained the CT looked good, nothing has spread, kidneys look fine. I realized I could breathe finally.  The kids were little monsters, they kept asking  for cookie and candy and knew we would keep supplying them, so as to keep them quiet when the doctor was talking.  We were played big time.  The date of the surgery was fixed too, June 16, 2011. Thoughts on whether it was too far away was there, but nevertheless we had received good news. IT HAD NOT SPREAD. We all headed home happy. We took the kids swimming, and it was the first happy moment in a while.

Three weeks went by as slowly as they could, we made a trip to P’s place just to take our mind off, I finished up as much as I could at work, not knowing really how soon I could return, as it all depended on the pathology report and if further treatment was warranted. So all was done, A’s sister was making a trip to help out during surgery, P came back and we all got ready…

The first step on a long road ahead!

Had to post…

I know I am on a hiatus and all, but these two conversations yesterday, one that weighs down heavily and one that lightens the heart show how much a two year old’s words can change your mood…one conversation was with me and one with his Lovely Paati…

So here is the first one…

As I was eating dinner last night, he came running like he always does and climbed up in the chair next to me..

Avy: Amma what are you eating?

Me: I am eating yogurt and oorugai (pickle)

Avy: Can I eat pickle?

Me: No, because it is hot, and you can eat it when you become a big boy.

Avy: Can I eat yogurt when I am big boy?

Me: Yeah, I think so

Avy: Will it still be yummy then?

All I could do was hug the child….when he talks like this it makes me wonder what kind of impressions he forms on those food that he can’t have and in his little head and beleives that everything will be okay when he grows up and I sure hope it does…..

So much for a heavy heart and let’s make it light now. My mom came back form India to help us during this whole health crisis I am dealing with. That means Avy stays home two days a week from Daycare. Now normally he and my mom fight and he asks her to go back to Chicago, not India, but Chicago to her other peran, but always qualifies it by saying “You can go after amma and appa come back from office”. So the following conversation was refreshing…LOL

Avy: Paati, don’t go back to India

Paati: Yen da kanna (Why sweetheart?)? I will go in a little while, but you have appa and amma.

Avy: Who will give me lollipop if you go to India? (Should mention that he was eating a lollipop, which was his dessert after lunch)

Paati: Amma and Appa wil give you lollipop. They will give you everything you want.

Avy: They will give me everything Paati, but not Lollipop!!!!!!!!!!!!!!!!!!!

Oh the grandparents!!!!

 

 

Hiatus

Not sure why I often come here and post hiatus notices, maybe it is because I want to write but life keeps taking various unexpected turns and I am not able to keep it all up.

So now life has thrown yet another challenge and curve ball for me and the next month will be spent dealing with it. As I always said if you have your health you have it all. Right now, my health is shot and I need to step back and fix it all.

I will be back with the story, the information that I want to share with everyone…keep watching….

So that’s how it happens…

As I mentioned in my last post, Avy has been asking a lot about allergies. Damn the spring! Don’t get me wrong I love spring, my favorite season, but last year and this year it is making the sweet little soul in my life suffer and so I HATE it.

He has been having a very bad case of allergies –environmental- pollen etc now. He eyes swell up every morning, there are red rings around those most beautiful eyes and he keeps complaining too. We give him Claritin in the morning, Benadryl at night and an eye drop to help him. It all works for a while, but not quite as much as I would like it too.

All considered this spring is better than last; at least he sleeps most of the night. Last year I would rub his back ALL night and scratch him gently where he needs, so that he will sleep. This time, he pretty much sleeps through the night, with only the AM itch sessions.

 Also, he is now able to tell us when something bothers him as soon as it does, so the relief is sooner. We wash his face and hands often, changes his clothes often, wash his sheets in hot water and the daily bath cannot be forgone.

It is a heart break everyday to see the pumpkin wake up with eyes stuck due to watering, swelling under his eyelids, hearing whimpers at night which say “Amma my eyes are hurting, make it go away”. Yet we survive. We have pretty happy days, since I am blessed with a child that listens, that understands and makes me want to make everything better.

Since he has been asking a lot about allergies, I ordered this book for him, so as to explain what is happening to him with the help of something he loves- BOOKS.

It arrived two days ago and I had been avoiding reading it to him, not sure why. Somehow I felt I was ‘burdening’ him with all that information. However, yesterday Avy found the book and wanted me to read it. I felt it was time too.

He had been to the doctor yesterday since his allergies were getting worse and so he was in the ‘allergy’ mode. (The doctor gave another set of medicine to change the regimen to see if it will work, and he is much better today without any change in medication).

We settled down in the living room, him on my lap, and I read slowly word by word. In a nutshell, the book is about a cow named Cody, who is allergic to cow’s milk. It talks about how Cody is a regular, cool kid, but he cannot drink cow’s milk. He drinks rice milk and bring his own food substitutes. It talks about how Cody gets sick if he consumes cow’s milk. I made it a point on each page to draw references to what Avy does, like saying “See Avy drinks rice milk too, just like Cody”, or “See Cody’s friends can eat cheese and hot dog, but not Cody, just like Avy cannot eat everything his friends do” or “Avy’s appa and amma can have yogurt, but Avy cannot, just like Cody”.

He listened intently, asked questions.  We reached the end of the page, and that read “Cody may never outgrow his allergies and that is okay, because it makes Cody a very special cow”. This prompted Avy to ask “Is Avy a special cow too?” I hugged him and said “Yeah, Avy is a very special cow”.

Then this conversation happened…

Amma: “Avy, if anyone asks you what allergies you have, what will you say?”

Avy: “Who anyone?”

Amma: “I don’t know, your friends, your teachers…”

Avy:  “I am allergic to cow’s milk”…followed by the same smile that fills my heart with purest joy.

It happened…he understood….just like that…

My heart became a million times heavier and tears flowed and I hugged him. I looked back and Yupa and his eyes were moist too. It was not sad tears. It was tears as my boy is growing up, that my boy understands and that he is able to bear such a large burden with so much innocence.

I explained to him that he is allergic to cow’s milk, egg and soy. Spared the others for now, as I must remember he is just a baby still. We read the book few more times and talked about it and he kept repeating occasionally during the rest of evening that he was allergic to things…and evening ended….

I was in a way happy, the efforts we took to not hide this from him is slowly starting to pay. We eat yogurt in front of him, we eat pizza in front him, every time making it clear to him that he cannot have it but we can, and that he can have something similar instead. He never felt left out, he has never felt deprived and like Cody, it is okay if he never outgrows his allergies, because he is one special boy.

All good things..

So it has been a long break, and not the kind I like. Work kept me super busy till mid April, then we had our much needed vacation last week- to visit my brother’s family in Chicago. My brother was not there, he is on official work to India, but my sis-in-law, her mother and my adorable nephew were there.

A quick recap, on the last 2 months, my mom has been with me since January of this year. Finally after a long time I got her to stay with me for that long. Dad joined us last week of March and it has been fun. Though I barely spent time with them due to heavy work schedule, the one person who enjoyed it all is the hero of the blog, my little one, Yuvi!!!!

He thoroughly enjoyed bother their company, especially grandma since she has been here longer. I still ‘tried’ to send him to day care 3 days a week, it ended up two days, either because grandma wanted him home, or Yuvi used all of his charm to stay at home.Days were spent at home with Yuvi, instructing Thatha and Paati all day long to do as he wishes, and they did nothing short of serving him in a gold platter. All requests accepted and heeded, parents were told not to interfere with the little ones wishes, emotions played against one and another, he sought refuge with Paati if thatha said no and vice versa…Like they say, however, all good things….

So the day came for them to leave. Now Yuvi has a stunning listening capacity and any reasonable explanation will work with him. I weaned him almost entirely by just talking with him about it. So like any other situation we tried that, but it led to tears and angers, so the subject was closed temporarily. Then, we all made the trip to Chicago last week.

Chicago is a ultra beautiful city and I love it. Either because, that was the place I spent most of my early 20’s or just the calmness of the place, I don’t know it makes me fall in love with it all the time.

We reached Thursday night, after 2 flights from where we live and a 1.5 hour drive to my brother’s place, as we took the flight into a nearby airport, as it was half the priceJ. Yuvi fell asleep the first flight and slept through the second, and only woke up as we were getting off the second flight and proudly announced..”THE END”J. Air travel is tiring even when sleeping I guess.

He was up all the way during the car drive home, but fell asleep as soon as we reached. Friday was spent mostly at home, tackling the two, two year olds. My brother’s son T, is 6 months younger to Yuvi. They are as opposite as opposites can be. Yuvi is soft, into books, very empathetic, very vocal, talks a lot…T is quiet, into cars, active, jumps up and down, climbs on things and loves music. After some initial hitting episodes, Yuvi promptly decided that T is a baby and that is why he was hitting him, and tried these following phrases in efforts to correct Mr. T.

Yuvi, after being hit on the head, “ T don’t hit me, you will get a time out”. He tried this couple of times and realized that T did not care and then Yuvi started hitting backJ

When T touched and banged the TV ‘T you will break the TV, DO NOT hit it, you will get a timeout”.

The funny thing is Yuvi never gets timeout on a regular basis, yet he thinks it is the worst form of punishment. Surprising what sticks to the little brains.

Saturday we ventured to take the kids to Shedd Aquarium, since the weather was a bit dodgy we did not get the tickets beforehand, BIG mistake. By time we got out tickets and the second batch of people came, the kids were already tired. Yuvi, has a pretty bad allergy breakout so did not enjoy as much as I would have liked him too. However, we did see DORA cartoon in 4D which he loved. He enjoyed those special glasses and kept reaching out his small hands to touch everything. Then we saw a Dolphin show and the guy at the Dolphin show just talked too much, at one stage it prompted Yuvi to say, “ I just want the Dolphins to jump”. Me too my sweety, me too.

We took the Metra train back home and Yuvi loved that, he kept saying ‘the train is Vroooomming”.

Evening my uncle’s family visited us and pretty much we spent time at home the rest of the trip. As the day to our departure neared it was very emotional for me. Every time my parents left I always knew when they were coming back. That way I have always been very lucky. I stayed with my parents till I got married, and even after that visits have been frequent as they stayed in the USA too. This year they are officially moving back to India and I am feeling the pangs. Just to tip the scale further, this happened…

My uncle from India was talking with us on Skype and Yuvi was playing with Paati , lying down on her and playing. Here is how the conversation went…

P (Paati); ‘Avy, I am going to India in 10 days”

Yuvi: “ No paati, come with me to Avy home. Do not go to India”

P: “Illa da kanna, I have to go, sonnen illa”

Yuvi (after few seconds of deep pondering): “Will you miss me paati?”

Tears just started flowing for my mom and me. What Avy felt at that moment I cannot describe, but to hear a 2 year old ask such a question was hard to digest.  That night as Paati was making him sleep, I believe he told her “Amma and Appa love me a lot, they hug me and kiss me every day before and after work”. More waterworks.

He has always been the adjusting type, no matter what he has or who he has, he does okay. He does not ask for things not around him as long as either mommy or daddy is there. Every time grandparents come and go, he changes his schedule to suit to them. After that conversation in Chicago he has not asked about them going to India again. If we talk about them, he says they are going to India, and moves on to the next thing. It hurts.

He has now started asking questions about his allergies, like “What is allergy? Who gave Avy allergy? Allergy hurts, my eyes hurt, Will Mannu (medicine) make allergies go away?”…I try to answer and still searching for more…

Every morning he used to get up and Thatha-Paati were here, he would say “ I don’t want to go see friends, I will be with paati”.

For the past two days as soon as he wakes up he says ‘I want to go see friends, they are fun”.

No one teaches him any of this, he says it all. I have a big boy in a small package with empathy beyond his years and it makes me emotional. Maybe I can learn a bit from him!!!

Bacccccckkkk!

Okay, so I have been in hiding. In decreasing order, here are the reasons: Work, more work, some health issues, then more and more work. Anyways, done with my busy season, so expect posts on a more regular basis starting next week; as this week I am preparing for the long due vacation. However, since you all stopped by, I leave you with the word of the day!!

Here is how the whole thing played out..

Yupa, Yuvi and me, sprawled out on Yuvi’s bed, trying to make up stories.

Yupa: “I don’t have much creativity to make up stories. Paati has such creativity, nalla nalla kadhai sollara*”

Me: “No, I think you are creative, at least you have more creativity than me”

Yuvi, who was hearing this conversation, chimes in..

“Appa, what is graypitypity?”

There you go people, your word of the day is ‘graypitypity’ , and hope you all are oozing with it to make everything you do more fun!!!!

Seeya soon!!!!!!!

* Grandmom says good stories!

Allergen Free Sugar Cookies!

 Hope all of you had a good Valentine’s Day or just a good day if you do not fall for the hype surrounding this day. I personally like it. I don’t expect much but I like the thought of it. This year was special- Yupa donated a dozen blankets, just because I love blankets to Operation smile. I thought that was just so thoughtful and probably one of the best gifts ever!!!

As usual Avy’s daycare had a party yesterday, so weekend was mainly spent on getting things ready for the party; Handmade cards for all his classmates and teachers, cookies and cupcakes. As I was going through the list and writing the names on the cards , Avy wanted to make one for two of his classmates, who have moved up to another class. He remembers!!!! So had to make more than planned. He was also partial towards his ‘best’ friend, filling his card with extra stickers than the rest…Oh how soon they start!!!

Then my favorite part- COOKIES. I had signed up to bring cookies, though I had plans to make them, a sudden unscheduled root canal almost made me pick up a box from Kroger. But I survived pain or not, I wanted to make them from scratch. So with the help of my little helper, I present Milk-Egg-Soy Free absolutely delicious cookies. Enjoy!!

Spread the Love!!

For the cookie dough:

All purpose Flour (I use the organic one): 1.5 cups

Applesauce :  4 ounce pack

Oil (Canola): ¼ cup

Coconut oil: ¼ cup

Sugar: 1.5 cups

Salt: ½ tsp

Baking powder: 1 tsp

Vanilla extract: 1 tsp

Nutmeg, Cinnamon (I skipped this as Avy is allergic) and Cardamom: A pinch of each

For the icing:

Confectioner’s sugar: 2 cups

Rice Milk: 4 teaspoons

Agave Nectar: 5 teaspoons

Vanilla extract: ½ tsp

Food coloring-optional

Preparation method:

1)      Mix the sugar, canola oil and coconut oil in a separate bowl. Beat until very smooth, about 6 to 7 minutes. Then add the applesauce and beat for another 2 or 3 minutes.

2)      In a separate bowl mix the rest of the dry ingredients.

3)      Combine the wet and dry and form a smooth dough

4)      Refrigerate for about 2 hours.

5)      After 2 hours take the dough out and knead it well and roll it out on a cookie sheet or piece of foil.  I did this in parts, small balls two or three times, made it easier to roll it out.  Also, I used a chapatti roller (tortilla roller) covered with a plastic wrap, helped it to be non sticky.

6)      Use the desired cookie cutter for the shapes.

7)      Preheat oven to 350 and bake for about 15 minutes. Keep checking often; to make sure it does not char.

Preparation of the icing:

1)      Mix all of the ingredients listed and beat till smooth. If it is too runny, as was my problem, add some flour.

2)      I used a spoon (Avy’s little spoon) to spread the icing, a brush will work too.

3)      Once all are iced, it has to be left overnight or 6-7 hours for icing to harden.

The recipe is sweet enough for adults to enjoy without the icing, for kids they would love the icing. Enjoy!!

Tweety!

My sweetheart and the tweety he ever so carefully drew!! He saw it every few seconds trying to get all the curves….:) Baby I miss you so much when I am at work and I really wish I can be with you all the time!! Though I have a feeling you might be missing tweety more!!

p.s, come back y’all, I am posting my milk-soy-egg free but too yummy sugar cookie recipe !!!!

Kisses

I enter the house, bags and baggage, after a 12 hour work day, to be greeted by a really happy Avy. He comes running towards me with the biggest smile, and I bend down to hug him…

He passes me and gets to the bag I am holding…A black bag with a picture of tweety on it (my lunch bag!!!) …

Gives the tweety the biggest kiss ever!!!!

I guess some things you just cannot control:).

That and the artist within the two year old….I present proudly the “Cow  jumping over the moon”

Multicultural and all

This week in Avy’s school it is multi cultural week, each day they learn about a different culture, they eat that kind of food, dance to the native songs, make art projects on the said theme. Adorable I say! Two year olds running around learning the differences between their heritages.

So his teacher called me last week and told me she wanted to discuss this week and see what we can do for Avy, food wise. She also wanted to know if I can bring something Indian so they could do it one day. I thought it was mighty sweet of her to call me and workout something for Avy. So here is how it planned out:

Monday; Italian – The kids were having mini pizzas. So I got one of the pizza bases Avy can have and the sauce that the teacher had, was compatible with him, so he got his own pizza too.

Tuesday: Mexican- It was chips and salsa. Well Avy did not go J He stayed home to be pampered by his Paati (Grandmom)

Wednesday: Chinese- the kids were having egg rolls, so with my mom’s helps we made baked spring rolls with all purpose flour and the stuffing was of carrot and cabbage. Yummmy!

Thursday: Africa/India, well they had decided Africa first, but then since I offered to bring Indian, it was added later. So Paati made vadais for all the kids and we sent through some songs for the kids to dance too. I know, I know, Kilimanjaro and Boom Boom from Endhiran are not reflective of my very prestigious heritage, but Avy is TWO. All he knows is to shake his cute little booty to these songs and I want him to share it with his friends J. Of course, the vadai came out yummy and I was told that there was some serious bargaining happening in the morning, as Avy wanted to eat his Vadai at home itself, even before his friends could get their tiny little fingers on them.

Friday: Hawaii, well he will not be going, as he has his physical therapy appointment and his scheduled date with Paati.

So when I think about all the planning and effort that has gone into this week it makes me happy, gives me hope that even if Avy’s allergies never go away, we can manage. We can do our best to re-create or just create something which he can enjoy with his friends without feeling left out. For the first time in a long time I feel like I am in control of his allergies. So I am going to try to enjoy this feeling as long as it lasts.

Spending every evening looking at his face, thinking if those red dots should be there, debating if he need Benadryl for the night or if he can go by without it, worrying about what he touches, rushing to wash his hands when in doubt have become a way of life for us now, and only when someone from the outside comes and looks at it do we realize the magnitude of that. This is about you Paati. I know you heart breaks every time Avy itches or his face turns red and you keep the house freezing cold all day (even when he is not there), in the fear that his face may turn red from the heat, from the dryness and you hold back tears when his face breaks out and my reaction to all that is usually “Yeah, Benadryl koodutha seriya podium (Yeah, Giving Benadryl will fix it”.  Then it dawns on me that it is not the norm for you, and how far we have come (Yupa and me) and that I should be more sensitive to you.

We have learned to accept these occurrences and live our life day by day make decisions one day at a time that is the only way to maintain your sanity when dealing with so many allergies. You should too Paati. Otherwise it wears you down!!!

Experiences like this make you more sensitive to everyone else around you and about everything else around you. I hope my kid learned cultural tolerance in school (well, I think all he learned was, Paati vadai is yummy), and I hope as he grows he will be part of the world where people are sensitive to others limitations and we can learn to appreciate the differences in us.

I guess I put it up for the 'Indian' clothes!!

« Older entries Newer entries »