Urgent: 4G LTE Wireless Card required for streaming video

Hi all,

Does anyone have a 4G LTE Wireless card? We are trying to do live streaming video of the memorial services and need a 4G card. Please let me know asap at 714-931-4308 or call my friend DT at 714-404-3383.

Thanks,
Sangeetha.

Memorial Service Schedule & Instructions

Hello,
Here's the finalized schedule for Nook's Memorial Service: 
Date: May 10th, 2012. 
Day: Thursday
Location: Fairhaven Memorial Park
Address: 1702 Fairhaven Avenue, Santa Ana, CA 92705
Telephone: 714-633-1442
URL: www.fairhavenmemorial.com (Refer to website for directions/map - Nook's name and program details will be listed under the link Upcoming Services). 
Dress Code: None! In true Nook style, wear what makes you feel comfortable!
Venue: Rose Window Building. When you enter through the gates, there is a board with a list of names for whom services are being held on that day. Each person has a color code. Follow the color coded arrows to your destination. 
Parking: On reaching the Rose Window building, park anywhere along the curb outside the building. 
Program Schedule: 
Open to All: 

Memorial service and visitation…………………...12 pm

Break (Snacks will be served) & Puja set up……….2.30 pm

Private Ceremony:

Cremation Service (Performed by Hindu priest)..…2:45 pm

Webcast: 

If you are not able to attend in person, but would love to say goodbye to Nook from wherever you are, we have arranged for the above services to be streamed live at www.ustream.tv/channel/nook-memorial-service

Donations:
Friends and family have contacted me to convey their condolences by wanting to send flowers to the funeral home. In lieu of flowers, if you are interested, I would like you to consider these suggestions:  
1) I would encourage you to make a donation to "Be the Match" organization (www.bethematch.org). There are several people like Nook who are still waiting for their miracle match. 
2) Donate blood or platelets in memory of Nook who had almost 100 units of blood/platelet transfusions in the last 45 days, round the clock, not counting the endless transfusions he has had, to battle his blood disorder, please donate at City of Hope Donor Center or American Red Cross.  
3) Register to be on the Bone Marrow Registry and hopefully help save someone's life.   
Condolence Messages: 
Thank you all for your kind words of support in this time of grief. I have been reading through all the messages but haven't had a chance to respond back to each message as yet. Please continue to use the email id nookmemorial@gmail.com to convey your messages and send your pictures. 

Memorial Venue and Program

The memorial has been finalized for Thursday May 10, 2012 per the following schedule:

12 pm - 2.30 pm - Memorial service and visitation
2.30 pm - 2.45pm - Break (snacks will be served) & Puja set up
2:45 pm - 3:45 pm - Hindu Puja (prayers)
3.45 pm - 4:00pm - Cremation (to be attended by immediate family members)

The venue is:

Fairhaven Memorial Park and Mortuary
1702 Fairhaven Avenue, Santa Ana, California 92705
714-633-1442

For any further information, please direct your emails to nookmemorial@gmail.com.

Sameer

Memorial Speeches and Photos

Hi All

In preparation for the memorial, we are putting together a presentation including Nook's photos and also consolidating messages from family and friends. Since I do not know all of Nook's close friends and family, I am broadcasting this message through this blog post.

Due to the paucity of time, it will not be possible for all to give a speech during the memorial. We plan to designate a couple of persons to read out messages we put together from you all. Please send in your succint tributes, reflections, rememberances and comments to the email address given below. We will try to include as many messages as we can fit in the alloted time. Also, if you happen to have a photo of/with Nook, especially from his younger days, please try to scan it and send it too.

Please send in your messages latest by Tuesday evening (USA time).

Email for sending the memorial messages and photos: nookmemorial@gmail.com.

Sameer

Memorial Service and Cremation

The memorial service and cremation is tentatively being scheduled for Thursday 10th May 1 PM.

We are still awaiting some procedural documentation from the hospital. Should there be any delay in procuring the documents, the memorial will have to be postponed.

The venue and the timings will be finalized later today. Just wanted to give some heads up to those who are planning to attend.

Will update the blog as and when there are any developments.

Sameer

Sad News

It is with great regret and profound sadness that I write this post on the blog.

Nook passed away at 5.03 pm at City of Hope today after a long brave battle with this horrible disease - MDS. He was so positive he would win this fight, being as super competitive as he was - but the disease won this round. We could not leave the ICU with our heads held high as I thought we would - we became a statistic.

I left the ICU leaving Nook behind laying in the hospital bed.

He passed away peacefully in his sleep. I held him in my arms as he took his last breath. He did not feel any pain - but my pain is unbearable. Things started going south starting from yesterday - his blood pressure dropped steadily all of today - his acetoses level increased this morning - and the body became more toxic, his ventilator requirements went up again and we realized things were critical.

At this time, the family seeks some private time to mourn our loss and work through the grief - so I don't plan to answer any calls or take visitors as yet. Please continue to direct your calls to my cousin Kamala at 952-237-1489.

Thanks for all your support through these miserably hard times. I wish the outcome was different.

We will inform you of the details of the memorial service which will be within this week. The cremation ceremony will be within the immediate family. My cousin will reach out to you for logistics and help.

Thank you so much (from the bottom of my heart - I will forever be indebted to you) for everything - the prayers, the support, the help, the car rides, the affirmations, joining into the exercises.

With profound regards,
Sangeetha.

Favor to pick up Nook's brother from LAX on thursday

Nook's brother is coming to LAX at 7 PM on Thursday (tommorow). Is there anyone who can pick him up. (If you work in that area or drive through that area, it may be easy for you)

 

Not sure if he needs to be taken home to Anaheim or to the hospital. Pl ask sangeetha directly about that and other details if you choose to pick him up.

 

Sangeetha, if u reading this, please put in a comment with details about his name, airline, flight number, where to find him etc. Also mention where he needs to be dropped off.

  

Thanks

Aditi

Volunteer to stay at the hospital tonight?

Hi All

We are taking turns to be at the hospital at nights so that Sangeetha's cousin can get some rest. Is there anyone who can go tonight (Wednesday)? You may go late after dinner and get back early morning before traffic hits. If u wish to go to work directly then you may shower at the hospital. Bring a blanket and pillow or a sleeping bag if u have one. Sleeping in the lobby chair or floor are the only options. Please respond if you can volunteer.
Thanks
Sameer

Puja at the irvine Mandir for nook at 10 am

Hello - please join my family if you can, for a puja on Nook's behalf at the irvine Mandir on Sunday morning at 10 am sharp (April 29th).

Address: 1732 Reynolds avenue
Irvine, ca 92614

Thanks!

Status Update - April 28 : 7 PM

Just visited Nook at the hospital. His condition is the same as has been for the last couple of days.

Sameer

This weekend

Hello everyone,

Thanks for all the support you have provided so far - my family is amazed that I have such a fantastic caring group of friends - I just wish nook was awake to see everyone rally for him like this.

I have a request to make and please don't be offended - I want to spend some family time this weekend with nook and the children - I am sure you are very anxious to visit Nook too - but I feel we need to get together as a family - even if it means Nook can't participate, the kids can hang out and watch TV here in the room ( can you believe I didn't turn it on even once in 35 days!!!! I didn't even feel the need to see TV.)

If people want to visit, I would like to restrict it to a window of 2hrs when u can visit! Only 2 visitors at a time.

Saturday - 5-7pm (they anywAy close at 7 pm for 1 hr)
Sunday - 5 to 7 pm

Thanks for understanding.....

Thanks
Sangeetha.

Status Update - April 26 10 AM

Nook's condition is the same as the last two days. Let's hope and pray for the best.

Sameer

All human wisdom is summed up in two words - wait and hope.......Alexander Dumas

2 car-ride favors required

Nook's sister Sarala is coming from India tomorrow april 26th into LAX at 11am. She has been asked to wait in front of the money exchange booth. Not sure if there's one there?!

Will someone be available during the day to pick her up?

2nd car ride - can someone take my sis to irvine at 135 technology center drive in irvine for Thursday and Friday?

Thanks

Status update - April 25th 9 AM

As per our communication with Sangeetha, there has been no change from yesterday.

Sameer

New dial in details - conference call - light exercise

Please join us for the golden light exercise at 7 pm. Please ignore the previous conf call dial in numbers. Please use this...

Dial in -1-530-881-1000
Pass code - 708464

Status update April 24th

Hi all

I am updating this blog on Sangeetha's behalf.

As we all know, Nook is putting up a fight, Sangeetha is supporting him to the fullest, the doctors are doing their best and we all are praying. We hope we all are victorious in the end.

Meanwhile, I spoke with Madhavi (Sangeetha's sister)at 245 PM. As per my conversation with her, Nook is still in a critical state. Yesterday (Monday evening) his heart rate started going down, and has been fluctuating. As per the doctors, this was expected due to the increase of toxicity in his blood.

Other than that, his condition remains the same as yesterday.

Please keep praying.

Sameer

Nook is still the same...

There is no change in Nook's condition as yet. He remains the same - critical.

I am so thankful and in awe of the support I received from such wonderful friends and family over the weekend. Thank you so much for everything. I was overwhelmed by the number of friends that came and showered their affection on us. Nook and I thank you for all the support, food, pickups and drop-offs.

Thanks from the bottom of my heart. I love all of you guys!!! Wish it were different circumstances that we all had this weekend get-together!

Take care
Sangeetha.

City of Hope Medical Center located in Duarte, CA

Here are the detail directions to visit Nook at the City of Hope Medical Center in Duarte (town), CA. (Please note -- City of Hope is the name of the hospital and it is located in the city of Duarte)

Address:

City of Hope Med. Center. 

1500 East Duarte Rd, Duarte, CA 91010-3000. 1.626.256.4673.

91(West) or wherever you are to get to 57 North.  Proceed to 210 West ~ go past the 605 overpass and take Buena Vista exit. 

Turn left on Buena Vista at car dealer.  At lite make another left. Go under the overpass and cross railroad and make a left at the lite on to East Duarte Rd  for City of Hope Hosp (stay in right lane).

If visiting during the day: turn right on Village Road and park in the big lot on your right. Walk ahead further and turn left at the sign HELFORD HOSP. Sign in at the reception ONLY IF THEY ASK. Proceed to elevators to the 3rd floor to the ICU.

Once you get to ICU, please text Sangeetha at 714-931-4308 and wait for her at the waiting lounge on the 3rd floor. Only two visitors are allowed at a time.

If visiting at night: Go about 1/4 mile slowly in the right lane on East Duarte past Village Road and enter main entry to the City of Hope hospital where the security guard is. Go past the guard and tell him you need to go to Helford Hospital Bldg. ONLY IF HE ASKS.  Otherwise proceed straight and turn right past gardens. Make another left at the next parking lot. (Not at the main visitor parking)

Follow signs to Helford Hospital.  Sign in at the reception ONLY IF THEY ASK. Proceed to elevators to the 3rd floor to the ICU.

Once you get to ICU, please text Sangeetha at 714-931-4308 and wait for her at the waiting lounge on the 3rd floor.  Only two visitors are allowed at a time.

Need all your prayers for another miracle

Overnight, his lungs went into ARDS(acute respiratory distress syndrome). the lungs are damaged now.

He is critical again. The pulmonolgist Didn't want to continue life support care. He said its irreversible now.

I have decided to keep him on the vent for a bit. But he thinks within the next 24 hrs things will deteriorate, all your prayers are needed and appreciated.

In the meantime, I will not be able to take any calls - I am going to just spend some time with him - my cousin sister Kamala will be the family spokesperson - please call her at 952-237-1489 for any questions.

Thanks for all your support.

Bone marrow biopsy was yesterday

The fevers went upto 104 and wasn't coming down - all cultures were negative. All tests are negative - so they decided to do a bone marrow biopsy yesterday to see if there's an infection on the marrow. The results will come on Monday - I thought it would be in by friday evening and I could post something positive about the mystery of the fevers. But it didn't come through even as a rush order.

Platelet count at 82

Really went off on a tangent there, meant to mention the platelet count - last draw at 2 am was 82....the one at 2 pm - she drew it but forgot to put it into the tube station to get it sent to the lab...!! She shouldn't have been busy with the lint :-) just kidding - she's really good!

Dr. Gloom's twin brother Dr. Doom

So I guess Gloom and D(h)oom decided to do a number on me on alternative days...so it was one of those days again yesterday where I was supposed to "think hard and decide what's the best!!" about what to do in the long run for Nook. So another down day...but I am up again - thanks KV for the pep talk...

So Mr. D(h)oom is like his namesake in the Hindi movie - was it Abhishek Bachan and Aishwarya Rai?! Well, I could soon be shooting the next Hindi movie here, with all the subtle flirting between dhoom and the nurses - sometimes that provides me some much needed entertainment - everyone falls all over him...it's an absolute must to keep the mask on at all times (I was chided by the ID doctor to always keep my nose covered!) - but this particular nurse, I notice sometimes will let her mask fall whenever she talks to him ;-)

Another nurse made sure she dusted off the lint on his doctor's coat!!

Anyways, what was that formula for the number of office romances - 25% of the number of employees...wonder with 5000 people working here, lot of soap operas in itself...

That's my only deviation on Nook's health blog - sorry, had to go on a tangent because I found it so amusing!

Tracheostomy went ok

The trach was done yesterday...spent some tense moments because the surgeon said 5 mts and Nook was gone for over an hour but of course, the pre-prep, anesthesia etc takes time! So Dr. Dry Surgeon who claimed not losing a drop of blood lost about 5 cc - which is minimal of course - but she was so impressive - her style of talking etc...looked up her profile - should have guessed...is a professor too (on the side - like doing 4-5 hr surgeries isn't enough in itself! I am still in awe of these doctors and how talented they are in saving countless human lives everyday!).

So Nook now has the ventilator going directly into the trach and the NG tube going through the nose directly to the stomach for the administration of meds, and liquid food (TPN and an Ensure looking kind of liquid!). He still has facial puffiness, a little edema on his hands, arms...

I started doing passive range of motion exercises on him every 2 hrs to keep the joints lubricated - otherwise he has been supine since March 22nd pretty much - no muscle mass at all.

The fevers haven't stopped spiking up and down. They ran a million cultures and tests, everything is negative so far, nothing has grown out on those cultures. They are giving him a cocktail of antibiotics (not the most ideal Happy Hour! especially not without chips and salsa), and a ton of drugs, so not sure why the unexplained fevers continue.

They increased the sedation up again a lot because they wanted him comfortable rather than agitated...I was doing FaceTime with Sanvi yesterday when she was having one of those crying tantrums and Nook got all worked up listening to her voice. So by the way, I will not be taking any calls if I am in the room, he understands everything now and considering he was such a private person and didn't want to share anything with anyone in the first place, he will get very anxious if he realizes I am talking to someone about his health - wonder what he will say if he discovers this blog!!!!

Poems & Dedications

My friend Aditi who is such a talented writer, poet, and comes up with all great skit scripts for their entertaining parties wrote this when she felt what I was feeling last week. Thanks so much Aditi...I am posting it here for everyone to read, not sure if it was lost in the Comments...

(And yes my dear Anaheim Hills friends, I can actually read Hindi - I had it as second language till 8th standard - and even though I don't understand every single word by word, I followed the gist of it)! But of course, you guys can translate!) :-)

जिंदगी क्या है ?

बस कुछ दिन, कुछ रातें
पल से पल की कुछ गांठें
बना जाते हैं कुछ किस्से
बस थोडे से ही आते हिस्से !

कुछ इंतज़ार कराते
कुछ बिन बुलाए चले आते
कहाँ से आते, कहाँ चले जाते
बिन खब्बर कहीं खो जाते !

कुछ भूल जाते, कुछ भुलाए जाते
कुछ सकूं देते, कुछ सताए जाते
कुछ यादें बनाए, कुछ मिटाए जाते
कुछ बीत जाते, कुछ बिताए जाते !

कुछ ख़ुशी, कुछ ग़म में मिट जाते
कुछ अपने साथ, कुछ दूसरों में बट जात
न क़ाबू आते, न रुकते
किसी के आगे नहीं झुकते !

जितने भी मिलें , जैसे भी मिलें
जो भी मिले, जहां भी मिले
इस एकपल में डाल दो अपनी जाँ
एक पल ही तो है, जिसका कोइ नहीं इमाँ !

OR (if u cant read hindi but understand the words)

Zindagi kya hai?

bus kuch din, kuch raate
pal se pal ki kuch gaanthe
bana jate hai kuch kissey
bus thode se hi aate hissey!

kuch intezaar karate
kuch bin bulaye chale aate
kahan se aate, kahan ko jate
bin khabar kahi kho jate!

kuch bhool jate, kuch bhoolay jate
kuch sakoon dete, kuch sataye jate
kuch yaadein banye, kuch mitaye jate
kuch beet jate, kuch bitaye jate!

kuch khushi, kuch gum mein mit jate
kuch apne saath, kuch doosron mein but jate
na kaaboo aate, no rukte
kisi ke aage nahin jhukte!

jitne bhi mile, jaise bhi mile
jo bhi mile, jahan bhi mile
iss ek pal mein daal do apni jaan
ek pal hi to hai jiska koi nahin imaan!

Process on posting comments

Thanks to those who clarified the process on posting comments. I test posted a comment too. So for those of you who were having issues posting comments, sign in as a Google user (if you have an account) and just enter your text and hit Publish OR select 'Anonymous' from the drop down and type your comments in the text box and hit Publish - don't forget to say who you are when you select Anonymous, so that I know who it is from :-) There's someone who said they're praying for me, but it says Anonymous, so I am not sure who it is, but thanks for all your prayers and get well wishes.

Platelet count

Forgot to mention platelet count, and I know a lot of you have that question on your mind. It is still oscillating between 70's to the 100's. But it went below the set up threshold of 75 twice in the last 2-3 days, so they did transfuse him with a unit of platelets each time. As of 2 AM today, the platelet count is at 76. They will give him more platelets prior and during surgery if required. But the surgeon quoted she is a "dry surgeon" and has a reputation for doing her procedures without shedding a single drop of blood! She said every patient she gets is in a fragile state and she's used to doing 1000's of procedures like this. She's actually a Head & Neck oncology surgeon and is the head of the department. Thank God for the great team here at City of Hope! Nook is getting the best doctors!

Quiet day yesterday!

Sorry no update yesterday...I was exhausted - went home and slept for 5 hrs during the day! Kind of felt I was coming down with something - body pains, chills, feverish etc...but 2 Advils with lots of sleep on my own comfy bed did wonders for me!

So here's the update:

- They are doing a tracheostomy (or tracheotomy) today in the afternoon. It is a surgical procedure and will be done in 10 minutes is what the surgeon said. You can google that up if you like,but it is basically connecting the pipe directly to his windpipe (trachea) so that the oxygen, food etc can be directly administered through the trachea.
- This will allow him to be slowly weaned off the ventilator and the scary face harness comes off etc.
- This normally is done after 14 days of being on the ventilator, he's already kind of pushing it with 21 days on this.
- They increased the sedation levels back up again, because they want him comfortable and rested. If they reduce it, he always has his eyes open all day and is resisting the ventilator and biting down on it.
- His lung function still needs to get better for them to transition him off the ventilator - the tracheotomy is an in-between step.

Slow but steady progress!

Hello - today has been kind of a busy day since it is Monday and all the doctors come back full swing after the quiet, sleepy weekened at the ICU.

• They did a CT scan to figure out if there's an infection in the abdomen, lungs or brain. So basically a full body CT scan. Everything looked ok except the lungs which he thought had some reason to go look into.
• So the pulmonologist did a Bronchoscopy to see what's going on inside. Sent it for culture - will know in 1-2 days if anything is growing on it.
• The incision is healing ok I guess. It is draining less blood compared to the "Hindi movie style" blood (ketchup) gushing out. So either it's capping off and the drain can be removed or they're not sure the tubing has clotted somewhere.. 
• The nephrologist seems to be happy with the kidney function.
• The liver is still enlarged, but the doctor says that's expected given the spleen is out now, the liver will take over doing what the spleen is doing till the basic condition is treated (basically he still will need the transplant!).
• Yesterday, the platelet count came down to 71 so they infused him with 1 unit. 
• Since the sedation level is reduced, he had his eyes open for most of the day today, and is getting pretty agitated with the ventilator in his mouth and with different people speaking to him - so the nurse finally said to let him rest now and back off a bit because if we stimulate him too much and he fights it, she will have to increase the sedation level and she doesnt want to do that. We have to let his strength build up back again slowly.
• The doctor ordered physical therapy to come in and start doing some range of motion exercises on his hands and legs since tomorrow is going to be the 21st day intubated.
• Last but the not the least (saved the best to the end), this afternoon's draw, platelets were BACK TO 102!!!!

P.S: After the nurse on night duty answered all my questions patiently at 12.30 AM when I reached here yesterday, she asked me if I am in the medical field! :-)

Posting comments?

A lot of people have mentioned to me that they find it difficult to post a comment because it asks for options etc...and it was difficult doing it...Aditi or the others who have commented on the posts already, if u can respond back  to our friends giving them instructions, that will be great!

Thanks,

Clarification...about Dr. Gloom

FYI - just a quick clarification - Dr. Gloom is just a figure of speech - that's not his real name! :-) He does have a real name! it's just my interpretation of his attitude - doom & gloom!

Quiet day today!

Went home last night and just came back now again at midnight - it was a breeze driving now rather than early morning traffic! Forgot my ipad and iphone - so if ANYONE is trying to email me or reach me, I may not be available. I have my laptop with me, but it may not be on all the time! My contacts are all on the iPhone so dont have numbers all memorized too!

Platelet count at 84 :-(

Platelets come down to 84.

Threshold for infusions to start again is 75.

I was hoping he wouldn't need more transfusions - he's already had about 60 transfusions so far! I want that to be behind us!!!

Send more energy flowing through the marrow to produce more platelets.

They are planning to reduce the sedation levels slowly to see how he reacts.

Anniversary update

Wow - 17 yrs - time flies by!!! I don't think we've ever not spoken to each other in this long a time!!!! Like Rajeev said - I can't continue to have one-sided arguments with Nook - he misses our arguments!!! I am bored too:-)

Yes - his gift to me this time better be really good platelet counts and lung function!!

As of this morning, it's ONE HUNDRED AND ELEVEN!!!!!yay - triple digits!!! I am almost forgetting those stressful days of single digit numbers like 3 and 6.

The lung function and the low grade fevers are still a concern. No cultures came back positive...chest X-ray still looks hazy....started some diuretics (lasics) on him hoping it may help with the fluid.

Have a wonderful weekend everyone - the skies are soooooo blue, clear and beautiful from the hospital window here after the pouring rain yesterday! Do something today that makes you happy and joyful!

Dr. Gloom conceded to being happy!!!

Dr. Gloom came by again and agreed grudgingly that the numbers do look good enough to him. He wants to see how he does over the weekend and if he continues to see some better numbers - he will think of bumping down the sedation - he said he also needs to see better physiological changes - I.e better looking chest X-rays (less cloudy and more clear spaces!) in order to decide to take him off the ventilator. He also wants Nook to have the physical strength to breathe on his own and be lucid enough to follow simple commands.

Yipppeeee again!!!

Dr. Gloom came and punctured my balloon the last time I posted a yippee jubilatory post - so I am scared to post this wondering what tomorrow will bring (other than it being our 17th anniversary) - but I have to say I am ecstatic that the platelet count is at 102!!!!!!!! Yaaaaay again!!! If numbers could be typed in CAPS I would have done it!!! That's how I feel!!!

Friday update!

Sorry I deviated and went off on a tangent in the previous post. I was going to say Dr. Gloom who defined Nook "critically stable" yesterday did better marginally better on today's stats. His platelets went upto 84, his lung oxygenation came down to 45 percent (they need it to be at 21 percent before they contemplate taking him off the ventilator - so please keep those lung affirmations going - I think it really makes a difference when one sends those messages to his subconscious).

His kidney function is also slightly better - bilirubin is down to normal levels - so hopefully the liver is doing better - the blood glucose is 246 - so he's being given insulin but probably temporary till his normal functions return...

On the other hand, the low grade fevers continue every now and then - all cultures are negative - so fevers still are unexplained...they are pumping him with all the possible antibiotics...

Hope lung function improves over the weekend....

As we get into another weekend here in the ICU....

It's funny how the ICU gets so quiet over the weekends - I didn't think sickness waits for weekdays and takes a holiday on the weekend...but there are fewer people here - hopefully that's a good sign that people are getting better!!! I really hope sincerely for the sake of the patient and their loved ones everyone in the ICU gets better....I have been here 23 days in the hospital - of which 19 days in the ICU, and I saw 4 people die - I see 20-30 family members gather in the lobby - I see people constantly crying - I try not to turn my head left or right when I walk down the corridor - I just walk straight ahead because if I do see them - and they don't make it - I can't get them out of my mind...especially the young beautiful lady with 2 little kids who has head, nose, throat cancer and in talking to the family they decided to stop her suffering and pain.

NOOK IS NOT GOING TO BE A STATISTIC - WE ARE GOING TO WALK OUT OF THAT ICU TOGETHER PROUD WITH OUR HEADS HIGH, NOOK BEING VICTORIOUS AND DEFEAT ALL THE FORCES AGAINST HIM.

The reason I am sharing this is not to make you more depressed but to ask you to take 10 minutes and introspect and see where your mind blocks in life are - work on it, don't build up the resentment - and most importantly - time is precious - spend it with your family with love, joy and gratitude that you have good health. It's impossible to ask people to stop bickering, arguing or gossiping, but do that for 5 minutes and move on - forgive easily, don't hold grudges and give the other person the benefit of doubt. As long as you have a loved one around you - express it and see the walls of defense crumble. No - I didn't turn into Plato or Socrates all of a sudden - but it's amazing how much strength I got from the support of all my family and friends standing behind me...I have my days of doubt and despair wishing it was different - but Nook and I have been dealt the cards, we play it, and move onto the next game....speaking of which Nook always wins at any of those card games he plays - so I am sure he will be a winner on this game too! "Disease" is the loser for this round!

Low day...

Nook's hematologist today declared "He's not doing good!" - he is not recovering as fast as they would have expected him to do so after a splenectomy - it's still a day-to-day wait and see situation. The ICU doctor came in and gave me a reality check of the situation - said the lung function is not something they are happy with at all...there is low likelihood of taking him off the ventilator in this situation but the downside is every single additional day in the ICU is risky and every additional day on the ventilator in the ICU is the least desirable thing...he wanted me to think of what is the objective we are trying to reach here by going on like this and for how long and wanted us to understand the risks - he feels a tracheostomy will increase the chance of bleeding and he is not ready for it. All in all, he made me feel more gloomy and depressed today - I tried to shut it all out by sleeping all afternoon and just got up! The other concerning thing is he started getting the fevers again continuously - they ran all cultures and as usual they came back negative. They are giving him a range of antibiotics to treat any possible viral and bacterial infection. They have him on a cooling blanket and ice packs... All of you please continue to pray for him to improve and do the affirmations for the miracle of healing to continue bit by bit in every part of his body. I owe a lof of you calls, email responses etc - sorry - haven't been upto it...will try and get back to all of you...

Yipeeeeee!!!!!

Yaaay! Yippee! Hallelujah!!!! Platelet count at 37!!! But again, last Monday too it was at 38 and then oscillated all the way from 24 to 17 to 12 etc - so let's hope this sustains, sticks, stays and increases!!! He's making good pee output too - 200 cc per hour...

Sorry for the delay!

Hello everybody - I guess I didnt have a chance to update and it got a few people worried as to why things were quiet from this end and I didnt join the 11 AM call also to provide status update.

I ended up coming home last night and crashed right away and slept a lot (till Ronak actually wet the whole bed!) - and once I am home, I get diverted by cooking, cleaning the laundry etc and did not have a chance to even check email. Only when I started getting calls from people saying what's today's update - things are really quiet - I realized people are anxiously looking for updates for his health.

Today's platelet counts are at 24 - it was 12 all of yesterday and today...it's fluctuating a lot. But the good part is that his oxygenation level has come down to 55% (from 80%). There is still considerable fluid in the lungs (not the pleural effusion kind he had before - but just from the overall fluid in the body that's not successfully coming out as output). They have him on diuretics (medication to drain fluid) but that dehydrated him, so they stopped it.

The kidney function (creatinine level) has gone up a little bit. But atleast he is making good pee output.

The surgical incision site is still bleeding quite a bit - the surgeon said if that continues he will put a stitch in there.

So that's the update for today - slow and steady progress. Today marks the 14th day in the ICU.

I spoke to the Blood Donor center - regarding platelet and blood donation - yes, it will help him. I am sending details in the next post of logistics and how it can be done. If you are local, please consider donating.

Thanks,

Monday's update

The nephrologist was comfortable with Nook's stats to take him off the continuous dialysis machine and put him on an intermittent dialysis requirement. Watching the kidney output to see what it makes (how much pee he makes in the bag in other words - ronak's favorite thing to check out when he comes here...)Nook still looks swollen to me, but they are giving him diuretics (lasics) to reduce swelling and water retention. Platelets are 20 today at the last draw - they oscillate wildly - he's still being given blood, plasma and platelets around the clock.... His Picc line clotted today - so they had to change it to the other armand put in 3 extra ports... He is now gain still running low grade fevers...I believe dialysis masks it - but now that it's off - the fever comes back!!! Need to ask the doc that! Take care and let's continue the affirmations at 11am pst and 7 pm pst. Thanks..

End of day platelet count!

Last draw at 10 pm was 24...he is being given platelets round the clock every 4 hrs though - slowly and steadily let's hope this increasing uptrend continues! Middle of the day draw at 4 pm was 73, but that crashed down again - not sure why such erratic swings - will ask the dr tomorrow - but let's pray that the platelet count has staying power in the upswing!

Picture of the sun for the Golden Light 'visualization'

Sanvi found this picture of the sun in her encyclopedia (while trying to read and understand how lightning is made) and came up with the brilliant idea that we all should visualize this sun for our exercise. So she wanted me to send an email to everyone with this Sun - took the iphone herself and took a picture of it from her book. So here's the picture she took....

Visualization Exercises continues at 11 AM and 7 PM PST everyday

Hi everyone!

I just wanted to remind everyone that the visualization and imagery exercises continue everyday TWICE a day at 11 am and 7 pm. We are going to continue doing this to send Nook healing light - the more the number of people who do it, the more beneficial it is to him. No pressure to join, but the added bonus is we now have my cousin sister the expert self healer who leads us through the 7 PM PST exercise.  If you haven't already been to one of them, try it - it will help your health issues too - Nook's brother from Ireland just joined once and he was actually having body pains all over - but he said he found the exercise to be so powerful that all his pains went away. I am not marketing this...we ourselves could have taken advantage of her work in the last 2 yrs, she being in the family - she ends up doing this for all and sundry all around the world and throughout India, but went running to her now.... (in case you want to check out her website - it is www.glsampoorna.com).

Hope to see you on the call tomorrow.

Thanks,
Sangeetha.

Updated affirmations

I have updated the affirmations on the link - removed the spleen ones, and added some on post surgery recovery and overall general health. All of you can also greatly benefit from repeating this affirmations for yourself too. Take a print-out of this and keep it handy - just repeat it over and over again for Nook - these are messages we are sending out to Nook's subconscious mind to heal his body.

Car rides to and from Anaheim Hills

My local friends in Anaheim Hills or nearby:

All the relatives who could locally drive have now left - Sravani leaves on Wednesday morning. So that leaves Radhika who doesn't drive here in the U.S who I swap out hospital duty with. My in-laws also would like to see Nook but can't stay there for long periods of time since they can't handle it. So if any of you find yourself going in that direction, please let me know and let's see if we can coordinate something...Thanks so much for all your help...not sure what I could have done without all your help in these last few difficult days....

Last platelet count still at 17

This morning's 10 AM platelet count is still at 17 - the lungs are still a problem area with lots of fluid in it thereby impacting his oxygenation level. This is now at 80% (lower the number the better it is) - so all of you please do the lung affirmations so that his oxygenation levels improve which means only when he can breathe better and on his own, he can be off the ventilator - otherwise they will continue the ventilator and as you are aware each extra day in the ICU on the ventilator increases the risk of pneumonia. So we have an uphill battle for the kidneys, lungs and liver to return to normal.

7 years ago in Paris.....in April for our 10th anniversary!

It was a totally unplanned trip, but it was a great coincidence that we were in front of the Eiffel tower in Paris on April 14th for our 10th anniversary!  Yes - chubby, happy and fat! Was 5 months pregnant with Sanvi!

My Thank you note to the surgeon!

I was so overwhelmed with gratitude to the surgeon that I wrote him this thank you note on the very day of the surgery. He was as cool as a cucumber, composed, and seemed humble & kind - not forgetting he answered every single 'BA' type question I threw at him...yes - Avani & Amit - sometimes, my non-stop questioning in my analysis life does come in handy! :-)

------------------------------------------
My note:

Dear Dr. ABC (removed real name),

Thank you from the bottom of my heart for willing to undertake the challenging task of operating on my husband's spleen despite his complications.

While treatment options were being discussed last Friday, Dr. O'Donnell was saying she would need to find someone willing to perform the surgery. I remember her saying, even if she did approach someone about Nook, they would look at her like she sprouted three heads!!! The radiation oncologist absolutely refused to perform another session of radiation due to the risks and also implied I should leave him as such and consider letting him go instead of attempting anything more. So thatswhy when you came to speak to me that day, and trying to find a room, I thought you were swinging by to say that you didn't want to pursue it due to possible operating mortality.

But I appreciate your taking on his case and helping us cross this first hurdle.

Thanks again from me and my family. You truly are a talented surgeon.

Regards
Sangeetha.

------------------------------------------
His quick response:

Hi Sangeeta,
You are welcome
We still have a long way to go but at least we have some hope to look forward to
In the next few days the picture will become a little more clear
--------------------
This is the first time I did not get irritated at all seeing my name spelled Northie style without the "t"  in Sangee"tha" :-) Just kidding!

Kudos to the fantastic team at City of Hope

It takes half the burden off one's shoulders when a patient has a great team of doctors as Nook has...his hematologist/oncologist, the surgeon, the nephrologist, the ICU doctors, the pulmonologist, the ID doctor, the nurses who have been caring for him 24/7 in the ICU with a ratio of 1:1 (1 patient to 1 nurse) - hats off to their dedication and perseverance in patient care. The name "City of Hope" now literally means renewed "hope" in me! And yes - it takes a city to care for a patient!

"It was the best day of my life too Sanvi"

I am happy too - it was the best day of my life too....borrowing Sanvi's line...I did not have a chance to update the blog today, but lots of friends called me to find out what's going on (the UI threw me off a bit!!) But I got up to hear the great news that Nook's platelet counts went up from the low single digits to 38!!! Ronak had to promptly tell me - "Mommy, that's your age and my weight" I wish it was the other way around - I wish I weighed 38 (kilos or something like that!)

Ok - there you go..I just declared my age to the whole world (not that it's a big secret anyway! And after I cut a cake with the candles 38 on it - my age froze in the kids' minds and I left it at that...thanks to Nook who bought a cake with candles that spelled the number rather than leaving it ambiguous!!! I am sure he wouldn't have allowed me to put any candles on his cake! Wonder if they sell question mark candles!).

From a range of 2 to 7 (2000 to 7000), the platelets going up to 38 in one night is good news. It then dipped to 27 and then 17 but atleast it's trending in the right direction. The doctor has been giving him IVig (Intravenous Immunoglobulin) to minimize the reaction of the antibodies in the platelets so that he could be more receptive to the platelets transfusions.

The surgeon's partners who rounded this morning said they were happy the surgery site was soft. They said it would be nice to see the drainage be more yellowish pinkish rather than red..but the fact that it's thinner and not thicker blood is a good sign too they said. He drained about 1 litre post surgery (did I already say that in a previous post??! - yes becoming old!) - but the surgeon's fellow said "Quality more than quantity" is what's important!


They did a bronchoscopy today since there were blood clots in the tubing and they sent it off for testing..not sure what that came back with!

I hope there's more good news in the days to come and he slowly and steadily recovers....

Oh - this thought just occurred to me - April 7th, 17 years ago - we got engaged after "seeing" each other officially on March 30th! April 14th we were married, and 16th he had to come back to the U.S - so that's another good sign - platelets going up on a date that signified something important from the past! 

I am home in my own bed!!!

Physically and mentally exhausted! No more hospital lobby or the ICU chair...I finally came home last night to sleep in my own cozy bed and to spend some time with the kids - thanks to my poor sister taking over hospital duty and day/night duty...another sister who slept on the floor in the lobby got bitten all over by something and is itching...so I swap out with another sister and she gets severe allergies...another sister fell sick and lost her voice (laryngitis).. lucky I have 3 sisters so I could put them all to the test! That's what they get for finally meeting up together after 17 years.

Sanvi & Ronak were thrilled to see me. Spent the whole day with them - library, park, McDonalds Happy Meals (thanks AF Web team :-) I have never bought into the concept of the Happy meals with toys - but I indulged them today. And finally Sanvi declared to me as she dozed off "Mommy, this was the best day of my life!!" Such simple acts leads to such complete joy - only kids can measure happiness in such short term milestones...wish we as adults did the same...instead of waiting to reach that summit - that keeps getting further away...we are so hard on ourselves...I should learn from the kids more often and measure my happiness at the end of the day... if nothing catastrophic has happened - I guess I am happy.....

Anyways, they asked me a zillion questions - Did they take out Daddy's spleen? Can a person live without a spleen? Will he grow a new spleen? What exactly does the spleen do? Is it ok for him to not have a spleen? Will this mean he will get more infections? They have been listening to fragments of conversation that my folks at home were having I guess. Ronak is the true engineer - his mind is on the dialysis machine with all its dials turning and the tubing with the blood going around it...it's fascinating for him to watch the "pee bag"!!

Crazy new UI for blog

All of a sudden everything about the blog UI changed - couldn't figure out what happened...couldn't post - my spring theme disappeared - the blue and green!

Nook minus spleen - day 2

Platelets still at 4 at last blood draw! Blood draws are then every 4 hours. Still waiting for the doctor to go on rounds so that I can get a status update. The good part is the surgeon's fellow who came to check on him said the blood that's being drained into a collection bag from his surgical incision looks as expected. She said when such a large part is taken out - there's a vacuum inside that the body tries to fill up with fluids. He is back on the dialysis machine - so the temperatures are down. I hope the rest of the fluids drain and the general edema in his body reduces! I look at people outside the hospital and wonder when I can go back to the mundaneness of life- sometimes that's more of a welcome change than this wait and see bubble that we are in for an ICU patient!!!!

Note from the surgeon

I was so grateful to the surgeon for willing to operate on Nook with a platelet count of 3 when every other doctor here told me that he needed to be at a platelet count of 50 before anyone would touch him and even if they did they would have to convince their backup surgeons that it was a good idea. I wrote him a thank you note. His cautious reply reminded me that it was too early for jubilation, still a small victory compared to the real problem and that the journey ahead is still long. I am reminded of my favorite poem:

Stopping by Woods on a Snowy Evening
BY ROBERT FROST

Whose woods these are I think I know.
His house is in the village though;
He will not see me stopping here
To watch his woods fill up with snow.

My little horse must think it queer
To stop without a farmhouse near
Between the woods and frozen lake
The darkest evening of the year.

He gives his harness bells a shake
To ask if there is some mistake. 
The only other sound’s the sweep
Of easy wind and downy flake.   

The woods are lovely, dark and deep. 
But I have promises to keep, 
And miles to go before I sleep, 
And miles to go before I sleep.

The last 3 lines - that's what resonates with me - that's how I feel....

Nook minus spleen - Day 1

Who needs the blasted spleen anyway??!!! - Day 1

I am so touched by everyone's emails and blog comments of concern, relief, support and prayers. I am so relieved that we crossed the first hurdle - I feel this immense load melt away from my shoulders that I've been carrying all these days since we stepped into the ICU - now let's hope the doctors' assumptions are true, that the spleen was sucking up all the platelets like this hungry alien monster - lets hope it rises now!!! Nook will wake up and be so happy to find it gone!!! Who needs it anyway???! (Thanks kris for allowing me to borrow your line - i echo your sentiments) - He always hated it - it had been giving him so much grief over the last 2 yrs - amrutanjan, Bengay, iodex, icy hot - nothing worked - the resulting body and bone pain always kept him up in the night. His breathing is more synchronized now with the ventilator - he looks relaxed... He is being constantly refueled with platelets and blood and other blood products. He had 14 units of platelets today. I hope the platelets go up from low single digits to high double digits.....

Golden Light Exercise Schedule

We will continue to do the golden light exercise at 11am PST and 7 pm PST thru Sunday (April 8, 2012).

Starting Monday, April 9th, we will do the golden light exercise only once at 7pm PST.

Babu's surgery was successful

We just spoke to the doctor and the surgery was successful. Babu did really well through out his surgery and he is back in the ICU. He is stable and doing well. We need to be really careful for the next 7 days and make sure that he does not pick up any infections. His white count is pitifully low and the next 24-48 hours are critical for infections. Thank you for your prayers and affirmations. It really helped. I appreciate all your support.

Surgery Affirmation

Please repeat this surgery affirmation for the next three hours as often as possible. "Nook/Babu - Every hand that touches you is a healing hand"

Nook has been taken into surgery

Nook was prepped for surgery at 6.30am pst and was taken into OR at 7 am pst. Surgery is expected to last for 3 to 4 hours. We will keep you posted.

Visualization Exercises 11 AM PST and 7 PM PST everyday

For those of you who have already been joining in our visualization exercises, thank you very much. We are following the philosophy of "Louise Hay - Heal Your Life", which promotes the theory of repeating positive affirmations over and over again all through the day which makes the mind and body believe that it has removed the negative block of energy that in the first place was a probable cause of the disease to that part of the body. My cousin Sampoorna is a coach, trainer, mentor and goes around the world teaching classes and expounding this philosophy - Nook never took advantage of someone in the family doing this for a profession, but he later got onto the bandwagon :-) For whatever it's worth, we are doing the 'Golden Light' exercise at 11 AM PST and 7 PM PST everyday and repeating the affirmations (see Link called Affirmations & Prayers).

If you would like to join, the dial in details are:

Dial in: 1-858-200-4900

Passcode: 3988788

Nook's nephew provided this free conference dial in facility - I have not tested what are the maximum number of lines to join. If you are bumped off...sorry, and join us at a future time.

I truly believe that everyone's collective praying and positive thoughts are making a big difference to him.

Some Ground Rules: 

1. When you dial in and it prompts you to announce your name, ignore it, and just hit pound. That way if you are a few minutes late, the session won't be disturbed with arrival announcements, and if anyone has to drop off, it doesn't have departure announcements again interrupting the flow of the exercise.

2. Please mute your lines so we have no background noises, static. I can't seem to keep Sanvi & Ronak quiet so that background chatter is inevitable.

3. At the end of the call or at the beginning, I usually give a quick status update on Nook.

4. We repeat the affirmations (see link on the Home Page), for each problem area that Nook is facing now. You are most welcome to stay and repeat it 10 times with us - Sanvi usually leads this for us, or feel free to drop off. We understand.

5. If you can't join in, just take a print out, keep it somewhere in your cubicle and keep glancing at it and repeating it or put it up on your fridge and repeat it if possible.

Surgery (Splenectomy) on April 4th

Hi everybody - he is still the same - the platelets are down to 3 - they keep oscillating between 3 and 7 - just to give you an idea of what normal range is: 150 to 200 for a healthy person. How many ever platelets are being transfused, the spleen sucks it all up like a hungry monster in 10 minutes. So tomorrow morning, he is going to have the spleen removed - they found a talented surgeon who is willing to do the surgery - most surgeons would not have taken up the responsibility for this challenging undertaking. The risks are very high due to low platelets count and low WBC (makes it difficult to fight an infection during surgery. The added complicated variables are a failed kidney that's on renal replacement therapy (dialysis machine) and the failed liver.

The surgery is at 7 AM PST on April 4th.

 I NEED ALL YOUR PRAYERS THAT IT HAS TO GO SO SUCCESSFULLY WITH ABSOLUTELY NO BLEEDING AT ALL.

I was told it is a complicated surgery with a 3 wk recovery period for normal people. It could have been laprascopically removed if it was a normal size, but the size of a watermelon at 10 pounds and 28 cms means a big surgical incision.

I need all the prayers possible, whatever you believe in, whatever mode of prayer you think works best for you - send all the positive energy to the operating theater, to the surgeon, the knife, the surgical equipment, golden light over everything!

Hello Everybody!

As most of you know, Nook was scheduled to go in for a Bone Marrow Transplant (BMT) on March 29th at City of Hope to treat his condition of MDS/Myelofibrosis. We were all set and on the brink of our journey to good health again, when he developed some complications with unexplained fevers and was admitted into the hospital on March 22nd. One thing led to another, and he has been in the ICU since March 27th. The BMT has been cancelled for now...he has an enlarged spleen (Splenomegaly), that is eating up all his transfused platelets and blood. The spleen is normally 10-11 cms and Nook's spleen is 28 cms and taking up his entire abdomen. All that pressure build-up has pushed the lungs reducing respiratory capacity, the kidney and the liver. He is on dialysis for the kidney (the machine is fascinating to Ronak who keeps declaring every day: "Daddy can come home - his blood looks all cleaned up!!!" The doctor is considering splenectomy - a very risky procedure. I need all your prayers.