Tuesday, March 31, 2009

REBORN - MARCH 24TH, 2009

VUTHICHAI WANGSATORNTANAKUN
OUR BELOVED TITI

FUNERAL MASS - MARCH 30, 2009

EULOGY

" 6 weeks ago, I had just returned from my second trip to Tel Aviv and was talking to my sister, Mimi, about the whirlwind of events and the possible outcomes...one of which led to today.
She said, ' Ko, if he dies, it means that his work for God on earth is done, if he lives, then he still has to do God's work here.'
Those were wise and comforting words.
But I could not help but think, ' Why the suffering?'
My daughter, Malika, died when she was thirteen months young having suffered for the better part of nine months from a debilitating cancer.
My sister-in-law's nephew, Big, died from a tragic road accident just months after his high school graduation.
'Why the suffering?'
I am sure that we all know other countless loved ones that have suffered greatly and died.
There is certainly no rationale or logic that can answer this question.
But what the mind cannot comprehend, eyes cannot see nor ears cannot hear cannot be discounted for it is faith in God that can bring peace to our frustrations and resolutions to our despair.
"For God so loved the world that He sent His only begotten Son..to save us from our sins" - the Holy Bible tells us.
Through Jesus Christ, we remember during this Lenten season His Passion in the Garden of Gethsemane, the crown of thorns, the Stations of the Cross, His crucifixion and the lancing of His rib with a spear.
His supreme suffering was necessary to save us from our sins and ensure our redemption.
As Catholics, we were always taught to live life in Christ's image. It is with a leap of faith that I believe that it is the greatest honor and sacrifice to also die in His image. It is God's will that a chosen few, the innocent and those that walk the path of the Lord have been blessed with that honor.
I did say that it is a leap of faith...it is my leap and I am comforted by it.

Shakespeare, in Julius Caesar, said, 'Of all the wonders I have seen or heard, it seemed most strange that men should fear...seeing that death, a necessary end, will come when it will come.'

My brother did not fear death. He fought his battles with cancer without considering this option.
He considered each daily high as a victory 'Thanks to God" he would write in his log and each daily low as a temporary setback.
In our final conversation, he said to me, ' Ko, the Israelites returned to Israel so Thais must return to Thailand.'
And return he did.
And he HAS and IS survived....
- by his wife, Lek..whose courage and determination held firm as she stayed by his side for the entire duration, not allowing herself to fall into a deep sleep nights lest he woke up and needed her. My wife, JoAnne, framed it best, ' Hon, this is the perfect example of true love.'
- by his son, Nicky..who is growing up before our very eyes to be as fine a man as his father.
- by his friends and relatives.. throughout the past four nights of the prayer services, the attendees represented a cross-section of his life..his cousins, nieces and nephews, uncles and aunts whom he grew up and played with, his friends from Assumption College, his friends from Milwaukee, his colleagues and customers from his professional life - all of which held him in the highest regard as a person, a friend and man above reproach.
- but last and certainly not least, he is survived by the pride that I know our parents have for him.
Papa's philosophy and honesty formed the cornerstones of our characters and Mama's proactive acts of kindness, sincerity and thoughtfulness formed the starting points of our daily lives.
Their lives followed closely the path of the Lord and Titi followed that same path unerringly.
I am sure that Papa is proudly greeting him with open arms in Heaven.
We are all blessed for having walked with Titi here on earth.
One day, we will all continue that walk with him in heaven.

Monday, January 5, 2009

FROM QUEST TO RECOVERY



January 5th, 2009
“I have done my part,” I told Titi as I left his room around noon, “now you do yours”.
Through his coming out of local anaesthesia, he smiled and raised his thumb, ”you got it”, he mumbled.
It had been very different and hectic in the past two days. We all felt like rats running through a maze, each move and turn predecided and leading to an eventual outcome, from protocol to transplant to recovery.
Protocol for transplant started Sunday morning – I arrived bright and early before eight for my stem cell harvesting. No one was there in the room yet but I was sure the hustle and bustle was going to erupt soon. I sat in the harvesting room reading the newspaper and had started doing the crossword puzzle when Sophie walked in. She is a Jewish immigrant from Georgia (the country Russia recently invaded) and will be doing the harvesting.
She mentioned that we had to go downstairs to get the needles into my arms for the IV because there were no doctors in the department this morning…all were summoned to Gaza to aid the wounded, was the answer to my obvious query.
Luckily, I saw Uri, a doctor , with eyebrow rings, that I know. He is one of the young and bright doctors of this ward, I was told. But if you saw him on the street here or on Khao Sarn Rd., a whiz in haemato-oncology was probably the last thing on your mind, right after POTUS. Anyway, he good-naturedly did it for me before he left.
The harvesting went well and was very productive, according to all that came in to see and chat. I sat through the four hours without a potty-break but my bladder was screaming when I rushed into the bathroom afterwards. I know you all did not need to know that.
A couple of hours later, the stem cells and part of the plasma that was freshly harvested was divided into two bags and the transplant had begun. Prof. Naparsteck did this part of the transplant right in Titi’s room (#23) and through the 90 minutes of the operation, shared us with her thoughts on Gaza and her take on the current events there. She was extremely interesting and not at all one-sided. She and her husband had spent years at well-known institutes like Dana-Faber in Boston and the National Institute of Health, well-traveled and definitely knows her subject matter. Titi was very tired and chose to sleep through most of the conversation as well as the transplant. We all were very tired even before sundown but round two was looming large – the second step in this short elephant walk.
Monday morning came after a restless night for me. No food after midnight was the order due to the administration of general anaesthesia at 8:30 am. I tried to stay awake as long as possible and finally dozed off only to be awakened intermittently by an over-active mind. Extraction, transplant, recovery – on and on ad nauseam were the thoughts until the alarm rang at 6:30 am.
At 7:30, I was in Titi’s room and talked to him for a while. He was well-rested and ready for round two. After a while, it was time to move forward in the maze. The bone marrow extraction was going to take place on the 13th floor – executive international area. I got a room with the latest equipment with large windows overlooking the Mediterranean – so far so good. After a few perfunctory questions from Prof. Slavin, the anaesthesiologist walked in and proceeded to set up the equipment. I was going to be IVed into slumberland, he told me. I saw him set up the oxygen machine and mask, IV saline bag and THREE syringes, two the size I once saw vets use for horses, filled with milky liquid and a clear liquid in the small one.
Once everything was set up, I was told to climb into the bed and proceeded to wait for Prof. Slavin and his team. In the meantime, the needle was inserted into my left arm, taped and saline drips began. He also inserted the oxygen sensor onto my forefinger and gave me the oxygen mask. I inhaled deeply, and saw 100% on the monitor. I exhaled and held my breath and the monitor beeped 86%. 100-85/100-86/on and on until I thought the monitor was going paranoid. I stopped only when Prof. Slavin walked in. He said he was going to prep me first before administering the drug so as to give me minimum ‘going-under’ time. He said that 12 seconds was all it took from the time the drug went into the bloodstream to reach the brain and deliver the knockout punch. I was put under a little bit after nine and when I opened my eyes again and looked at the clock on the wall, it was 10:10. Out and back in 60 minutes…such efficiency , I thought.
There was a dull ache around where I got poked and it was very heavily bandaged and to be kept dry for 24 hours.
I felt wobbly when I got up to go to the bathroom minutes later but felt stable walking out. Hospital rules and insurance policies forced me to stay in bed for about an hour – about the time when two orderlies came and wheeled me down to the ninth floor ward. There again, one of them abandoned us at the elevator and the other one wheeled me into the aisle in front of the nursing station, again with no idea where to deposit the package. I helped him as much as I could but there was ‘no room at the inn’. I sat up and demanded that the IV be extracted at once. ‘Not for 5 hours”, one nurse (looked like Nurse Ratchett) said as several nurses walked up. “So where are you going to put me?” I said to puzzled faces. Finally, Nurse Orit, mother of a five-year old, knew how to handle the situation. “I will take off the IV after this bag is finished”, she bargained. I liked the deal.
Lek and I sat in the aisle on chairs kindly supplied by the nurses…. Prof. Slavin and his team were already inside #23 working on the transplant. He walked out some half-hour later and pronounced that the transplant went great. The bone marrow was transplanted into both sides of his pelvic bones. The only present concern was still the pains in his butt and the serrated lines there that the laser had cut into way back from Bangkok. Infection and sepsis would obviously have a headstart there if anywhere, he said.
As I sat with Lek later on in the evening having a specially-prepared extra spicy Thai chicken with vegetables from a Thai cook in the local Chinese take-out in the mall, my phone rang. It was Titi.
Frantically, I said hi and he said he had been trying to call Lek and could he talk to her. Lek just listened to him and finally said ok. Thank God he seemed all right, I thought and asked Lek what he wanted.
“Chicken from McDonald’s”, she replied. We were both quiet for a moment. It was the first time he had requested food since the quest began!
“P’Andy’s blood must be very strong”, Lek said with a smile.
COULD COMPLETE RECOVERY BE FAR BEHIND?
As I am leaving Tel Aviv tomorrow, this is the last AndyTelAviv blog but certainly not the last communication regarding Titi to all our dear friends and relatives.
We thank you all and really appreciate all your prayers and blessings to date and hope that it will continue as we all cheer and boost Titi towards total recovery.
Let’s all have a great 2009!

Thursday, January 1, 2009

GRADUATION


January 2nd.,2009

Yesterday Titi completed his 6-day chemo courses capped with a low-radiation treatment in the evening. He is now pronounced ready for the next leg of this trek – the two-day transplant starting on Sunday the 4th.
His six-day course was not without the usual travails of the side effects of chemotherapy – it was once described to me as ‘hell on earth’. The body rebels and does all sorts of strange things the mind cannot accept. The mind is used to being in control and simply cannot accept the facts of uncontrolled bodily functions as well as loss of appetite for prolonged periods.
Titi weathered the ordeal with minimal fuss BUT, as Prof. Naparsteck – the department chair said, be prepared for next week (post-transplant). It will not be a Sunday walk in the park either.
She went on to map out the rest of the quest here in Tel Aviv.
Engraftment (transplant acceptance by his system) would be in about a three- week timeframe.
After 4-5 weeks, he would be able to move into separate housing and return for tests and non-oral treatments (about three times / week).
About 10-15 weeks later, he would then be able to return to Bangkok under local care and supervision.
There are always two primary concerns post-transplant: infection and recurrence. Infection will depend on how strong his immune system will grow and counter the various and numerous types of infection. Prof. Slavin, being an immunologist, will be the key person in looking and preventing infection.
Recurrence is something every cancer patient lives under the shadow of but in this case, haploidentically mismatched donor, the odds work for the patient. The patient uses his own immune system along with that of the donor which makes the total system more stronger in fighting the blast leukemia cells.
She said the patient will be declared to achieve total remission after 2-3 years. CML does not come back after that.
Meanwhile, graduation for the donor will be Saturday night after my last Neupogen shot - 8 in all – 2 a day 12 hours apart. My back and joints are already aching 50% through the shots – similar to the day after an average joe runs a mini-marathon. Normal and a good sign… the doctors say.
You are on your own here in a public hospital – the patient is taken to where he needs to go by an attendant and once at the destination, he locks the wheelchair or bed and WALKS away! If the patient was there unaccompanied and/or not aggressive enough to go up to the front of the line and ask, he is definitely at the mercy of his surroundings.
Last night, for his radiation, he was wheeled away on a bed from the ninth floor to the second level of the basement – me walking briskly behind. We went through so many turns and long tunnels that by the time we got there, I was hopelessly lost. No problem , I thought, just follow the bed. When we got there, the radiologist looked around the bed, now sans attendant, and asked me where the patient’s file was. Upstairs, if it is not here, I said.
“Could you go and get it?’ she asked.
“OK,” I answered immediately, “please draw me a map on how to get there.”
She looked at me for a while and after mumbling under her breath, picked up the phone and found an option. There was apparently no cohesive process. One department does not help out another but the work gets done and the results end up in the right hands.
My two shots of neupogen a day ended up being another constant search for somebody to give me the shots. At the start, I was given 8 packs of the prepackaged shots along with a card with a list of the times and dosages for each shot and was told I was on my own. The shots should be refrigerated and each shot should be recorded and signed.
Not a problem, I thought, until last night , when I took the package and card and went in search of a doctor or nurse to show me some merciful consideration. I was palmed off by the first two nurses and saw my ‘package’ dropped off at the desk of a male intern who was taking care of my brother during his shift. Apparently, it was HIS job and not to be assisted. Wonder which gentle soul will help me tomorrow…
The waiting period before the transplant is almost over… the transplant being the event that represents the milestone that we traveled so far and sacrificed so much to attain. We are all aware that this is just the first step in a two-year journey to shake this deadly sickness and can be assured that with the support as shown to-date from family and friends, that it is a healing and revealing journey – one that is rarely traveled in peace and comfort.
By the way, 'Happy New Year" was never once wished or uttered during the past week here. Then I found out that Roshashana (sic?) was the equivalent of the Jewish New Year and that their calendars run from September of one year to August of the next. So, there you go, I learn something new every day.
Sabai, sabai

Saturday, December 27, 2008

IN PLAY


IN PLAY

5am, Sunday, Dec. 28th
Yesterday was the first full day of chemo for Titi. The first of a six-day barrage to vanquish and purge his system of all the antibodies in preparation of the freeze in order for his body to accept the engraftment or acceptance of the stem cell transplants on day 0 and day +1.
On the 26th, he experienced an extreme heart palpitation (250bpm) for a couple of minutes and was back to normal with a morphine injection. This is the second time that it happened – the first time was when he was in the hospital in Bangkok. The doctors here said it was normal and that it could happen to anybody – not related to his condition !?
Yesterday, he experienced chills, a side effect from the chemo which was subsequently quelled with another morphine injection. May have to take him to a drug rehab center once he gets out of here ☺
From now on, there is nothing else that can be done except to wind down the days of the protocol and to ensure that he will not be rocked by any sepsis or external infections.
In the interim, it seems that everyone here is putting their lives on a holding pattern. The protocol has to be carried out in its exactness to maximize the probability of success.
Stem cells must be harvested on the very day it is transplanted and since I am a half-matched donor, an extra-ordinary amount of stem cells must be available. The neupogen shots (to elicit stem cells into the blood stream) will be lengthened to 9 shots instead of eight and Prof. Naparsteck said a rich harvest is expected within the 4 hours or so. I do not know how she can be so certain.
I am home-sick and also a bit concerned – last week when they took the initial blood samples from me, I suffered a haematoma (blood leaked into the subcutaneous level of the skin) and I can still see the red blotches on my right forearm which one of the nurses here confirmed the nature. I think I know the cause – when the nurse extracted the needle (after the samples were collected) the sweeping motion of taking the needle out plunged the needle deeper into my skin (and thereby puncturing the vein on the other side, I guess) before extracting it. Just a guess and never to be confirmed. The thought of a higher objective for being here compels me to be as diplomatic as possible but also to ensure that such things are minimized or rendered non-existence during the course of the protocol.
How far can I take this advocacy and how many willing ears? As far as I can tell, the doctors and nurses say they are overworked and does not show the level of care and attention we are used to in Bangkok. Are we spoilt or should we strive for TLC? How wide-ranging do they accept as responsibility for curing a patient?
Meanwhile, we still have been unable to find a coin-operated Laundromat. Websites revealed 5 of them in Tel Aviv – no addresses – just phone numbers. Today, after Mass, would be a good time to get the hotel front desk to help with the phone calls (only hotel and hospital staff know conversational English, cab drivers, for the most part understand but feign ignorance- St. Peter’s is one of the most well-known tourist landmarks in the area, but our cabbie took an extra 15 shekels finding it) to locate these sites of growing interest.
I did find some Thais working in a fast food joint in the hotel complex and they gave me the name and address of a local Thai restaurant that THEY themselves frequent. Another place of now extreme interest to visit for dinner.
My neupogen shots will start on New Year’s Eve and that should reroute my mind from thinking about home, laundromats and Thai food.
Until then,
Sabai, sabai

Thursday, December 25, 2008

PROTOCOL


THE HOLY CITY
CHRISTMAS EVE saw winds and storms over Israel beginning at 3am. By 9:30am when Ellie, our designated driver and tour guide, picked us up the temperature was in the low teens (decC), extremely stormy and windy. Lek took a respite from the hospital and joined us on the trek.
Ellie was aware that we were here because of Titi and that he was in the Medical Center. Instead of heading straight for Jerusalem, he offered to make a side trip to Old Jaffe – a 2000+ year old town adjoining Tel Aviv. The church that we had gone to previously with Titi, St. Anthony, was in this town. Today he was taking us to St. Peter’s and we soon found out why.
This ten-century plus old Catholic church stood on a bluff overlooking the Mediterranean south of Tel Aviv and therefore the views were quite scenic especially on that day, with the rainy haze and white-capped 3 feet waves.
There is a suspension bridge that spanned across a butte to the Church named the Wishing Bridge with astrological symbols affixed on the railings spaced along the length of the bridge.. The sign says that those who cross it and pray with their hands placed upon their signs would get their prayers answered. I think Ellie had done this before with similar visitors. After prayers were offered and pictures taken from every angle and nook and crevice, we finally set off eastbound for Jerusalem.
The hour+ trip was uneventful but as we approached Jerusalem, on the roadside of Hwy.1 leading into the City, we saw burned-out wrecks of army tanks and jeeps strewn along n long stretch. Remnants of the days, only twenty odd years ago, when the Israeli troops traveled from Tel Aviv to take control of the Holy City.
Jerusalem is a city that evolved and grew around the Old City and the surrounding numerous mosques and churches and sites of historical interest. The roads meander and snuggle, up and down the hilly city with relatively little or no street signs to help the tourist venturing on their own.
We chose the Garden of Gethsemane as our first stop and Ellie had a hard time finding it. But timing is everything…as the gates into the garden and church opened just as we reached.
The eight olive trees in the garden was majestic and certainly held its credibility as to its existence when Jesus once strolled and prayed in it during the Passion and before His crucifixion. We also found the rock where He supposedly knelt and prayed before the soldiers came for Him. This rock was half outside and half inside the Church of the Nations (locally called Church of the Agony).
NOTE: All the pictures will be posted on a website in the very near future.
It was a very emotional and stirring visit only to be shocked back into reality when we stepped outside the gates. There were vendors selling religious trinkets and olive branches (!) outside the gates. We stopped and selected about 7 items which we had bargained down to about 70 shekels. We were unable to come up with the exact change so I pulled out a hundred shekel note and waited for the change. Instead, I was offered some more additional items which I adamantly refused and demanded my change. All of a sudden, I found his whole armful load of chains with crucifixes deposited on mine and my 100 shekel note disappearing with the holder into the side streets.
We then went t the Old City through the Jewish side. Entrance into the Western Wall (Wailing Wall) is separate for men and women and the Wall correspondingly had men and women sections. While we were there, scores of young uniformed Jewish students (high school age) were emptying by the busloads and queuing to gain access to the Wall and almost all of them were carrying semi-automatic weapons. Not a very comforting sight for the average tourist from Bangkok but I am sure a way of life otherwise.
We then meandered along the small side streets that led us into the Armenian and Christian quarters totally lined with trinket shops and eateries. It was getting dusky and really chilly and the ‘shop till you drop’ attitude posted a new low. We headed back to the car and Tel Aviv.
On the way to the car, I received a phone call from the Hospital. Titi’s Protocol had been decided.

THE PROTOCOL
The countdown with the daily treatments leading to the transplant is in black and white.
Today, Christmas eve, was day -11 > mapping day.
25th: Titi to be given the lymphocytes and plasma previously harvested from me. This step is given in order for his body to build up (create) the antibodies that would counter the donor’s good cells. These newly-formed antibodies would then be killed off on subsequent days with chemotherapeutic drugs.
26th: day of rest and antibody formation
27th: Chemo begins
1st: New Year’s day marks the last day of chemo
2nd: DDay minus 2: Titi gets a dose of radiation to complete the preparatory process
3rd: rest day
4th: Titi will receive the transplant of stem cells that will be freshly harvested from me that same day.
5th: Titi will receive bone marrow cells also harvested the same day from me.
6th: and onwards – recuperative process begins and all the prayers previously harvested take effect.

CHRISTMAS DAY
With the protocol set, it is game on! We realize that temporary setbacks, sepsis, fever etc. might still occur in addition to his extremely sore throat and butt.
Titi has a hard time swallowing so his diet has to be altered in order for him to be able to intake his nutrients with more liquids.
After breakfast, Nicky decided to stay with his dad while Mimi, Lek and I set off for Mass at St. Peter’s. Our cab ride got ‘lost’ so he says – a common trick to load up the meter, we understand, - and arrived just right after the sermon.
Unlike St. Anthony’s, where the parish was predominantly Africans, St. Peter’s is almost all Filipinos. The mass we attended was a guitar mass punctuated by Filipino songs and thus lent a distinctly Asian atmosphere.
While we were visiting Titi at the hospital late afternoon, we were invited to join the lighting of the 5th candle celebrating Hanukah. Prof. Naparsteck, the chairlady of the HematoOncology Department, explained to me that this celebration is the only non-religious one in Jewish rites…it is about how in ancient times, a person found a small cruet of oil and managed to light up the temple for eight days with that cruet of oil – ergo the nine branched candlestand –the middle one being the official ‘light’ used to spread the flame. She went on to say that the celebration here was sponsored by a couple whose son was a patient at the transplant center but unfortunately, died.
There was singing and tears of joy and sorrow flowing from the doctors, nurses and patients…each lost in their own emotions but all were assembled at the nurses’ station in the bone marrow transplant department.
Starting tomorrow, when the protocol begins and chemo begins to tackle a new phase of this odyssey, we need your prayers now more that ever. Thank you.

Tuesday, December 23, 2008

THE QUEST CONTINUES



Wednesday, DEC. 24TH; 3am
Christmas eve – we are planning on going to Jerusalem, the Holy City today. After ‘interviewing’ several taxis that we took previously, we chose a friendly ‘wife loving or is it fearing’ elderly gentleman who has visited Bangkok, of course staying at Khao Sarn Road for several weeks. During the cab ride and during the course of the conersation (interview) he made several calls to his wife to ask questions re their Bangkok trip (she remembers everything…he says with resigned admiration). This odyssey will begin later on today.
Monday saw Titi settling from his high fever again with a high flurry of activity centering around his ever-volatile condition…attempting to amass a large-enough data-base to find a window of stability in the near future to perform the transplant.
Because he had a stubborn pain in the buttocks, a visit to the proctologist was scheduled and the subsequent reports were maddeningly alarming. After the check-up and q and a with the proctologist, the following was evident – the attending doctor in Bangkok slept on her watch in this instance.
Titi had laser surgery several days before his departure from Bangkok. The surgery was performed with the intention of making the trip less painful – all good so far except we now realized that a proctologist was NOT consulted prior to the surgery. It was just between the hemato-oncologist and a surgeon.
The resultant effect was that layers of protective skin (there is a very large amount and cluster of nerve-endings and nodes collected near the scrotal area) where the laser tried to clean up was peeled away – the excruciating pain was the apparent result along with his apparent lack of neutrophils (an immunizing agent) in his blood. An ointment was ordered and delivered that afternoon and according to Titi, seemed to help.
The negative take away is that the protocol cannot begin until this condition stabilizes i.e. no fever and infection on the near horizon. The proctologist said that if it does not clear up within several days, another operation may be necessary!!! Prof. Slavin just had one comment on that – ‘just get well’ – he ordered Titi.
Brushing aside all the negative recriminations of ‘what might have been if the laser surgery had not been performed etc. etc.’ , the overall consensus in our group was to forge ahead with positive thoughts and concentrate on getting well soon.
In the meantime, on Tuesday, the preparation for the transplant had begun.
I was summoned to be at the hospital at 8am for registration and blood tests.
At nine am, the paperwork was complete and at 11:30 the bloodwork started.
( In the pix..blood flows out from the left and back into the system via right)
About 50 ccs were collected in vials and I was told to come back in 15 mins. for them to harvest about 100+ ccs of lymphocytes and 150 ccs of plasma. The preparation for the ‘killer cells’ combo of Titi’s and mine to overcome the blast cells had begun.
The process/procedure in theory is quite simple but Prof. Slavin warned, ‘the devil is in the details’.
Theory of the Procedure (Haploidentical Stem Cell Transplant – HSCT)
Prof. Slavin started off with a question:
“What if some 50 ccs of the blast (read bad) cells were taken from his body (Titi’s) and put into mine?”
Answer: My immune system would overcome and kill these baddies in no time.
On the other hand, 50 ccs of the good guys would not do the trick if similarly transplanted into the midst of the blast cells.
To drain the body of all white blood cells and then to find an identical (never 100% matching) donor would always be subject to 80% probability of system rejection of the donor’s cells – especially at Titi’s age and severity in the blast stages of this type of leukemia (CML). The ideal thing to do would be to have Titi’s existing immune system accept the good donor cells (half his and half donor – haplo), forge an alliance and kill the blast cells together. This is the theory – in a nutshell).
In order for that to happen, the procedure would have to temporarily freeze Titi’s immunity process in order for his body to adjust to the invasion of the good cells. This will be accomplished with a combination of drugs to suppress the existing lymphocytes and antibodies.
The good professor then goes on to describe a method of separating the killer cells (the immunity defenders) resident in the system. Separation of the good killer cells and the bad ones means nullifying the potential of the bad ones so that the good guys can have the time to join forces and kill off the baddies.
Concept is clear but the process is apparently fraught with risks of infections and sepsis. Prof. Slavin is an immunologist first among his many areas of expertise so he is very well suited to help Titi in this case.
The schedule is as follows: Respites for the patient (to continue the healing ‘down under’ ) and for the donor . Tomorrow– neupogen shots will start at 8am/8pm Christmas day for four days to culminate in the harvesting process on Monday the 29th. Hopefully, Titi can then be ready to start the protocol by then.

God bless us all with a Merry Christmas.

Sunday, December 21, 2008

Letters from Israel II


HAPPY 33rd ANNYVERSARY, Hon!!!!! First one celebrated apart and hopefully never again (apart, I mean ;-) )
MONDAY Dec. 22nd, 3AM – WHERE DID THE WEEKEND GO?

One of the highlights of the trip to-date was breakfast.
The breakfast buffet in the hotel is a welcome experience. A copious array of salads and cheeses along with freshly-scrambled eggs, scones and small cakes stuffed with herbs and chicken greeted us. Apples, oranges, grapes and persimmons along with about 5 different types of cereals flanked by jars of different teas graced another serving table. We are told this is a typical Jewish/Mediterranean breakfast and a definite treat for all guests. A great way to gather momentum through the day and did we ever need the pick-up and energy boosts.

One take-away for the ages from these past three days is to understand the meaning of patience – in terms of Titi’s illness as well as the modus operandi of the hospital staff with a healthy side-helping of Murphy’s Law thrown in for good measure.

We did not trek to Jerusalem on Friday as planned. Titi’s external pain centered on his buttocks returned and he’d rather take it easy and rest, staying put in room 23 and get adjusted to his surroundings. It turned out to be a beautiful day, about 23degC and sunny so the rest of us decided to walk the half-hour or so to the sea shore where the Mediterranean awaits.
( see picture)
The azure waters that greeted us on arrival was as calm as the panorama was wide. Sailboats dotted the horizon like fluffs of cotton and grew bigger as we hurried on down through the park to the shore.
Mimi and Nicky and I opted to walk along the shore in the cool water while Lek decided to stroll ahead on the pavement and wait for us at the pier rest stop. After a respite of water and sodas, Nicky wanted to go one more round to collect the remainder of the seashells he might have missed and to select the best one for his Papa.
We stopped for lunch at a corner restaurant where bottles of ketchup and mustard were sighted – sure sign of hamburgers and other familiar food. Servings of salads and burgers turned out to be huge to assuage the price of each order. The pasta given to us for tasting turned out good so we ordered one to go for Titi. The excuse to take a cab was there to get the food back to the hospital while still hot and indeed we arrived in good time and Titi was in good spirits although the nagging ‘pain in the ass’ was persistent. Jet lag finally caught up on Friday afternoon.

Saturday morning, we made plans to attend mass. It was the anniversary of Malika’s death as well as Shabat here in Israel. Titi was dressed and determined to come along – it was his first outing in more than 3 months. The church, St. Anthony’s, was in Jaffe- a ten minute cab ride away. There are no Catholic churches in Tel Aviv – a relatively new city some two hundred years young while Jaffe, also a port, existed a couple thousand years ago, an Arabic cab driver residing in Jaffe told us.
The exterior of the church seemed imposing but friendly while the interior retained the traditional gothic structure with high-domed ceilings and tall stained glass windows. The parish was ninety percent African, Asians comprised the rest of the church goers that day. During the offertory, accompanying the cruet of wine and chalice being walked up to the altar was a long possession of people carrying baskets of fruits amidst a joyous and raucous African hymn accompanied by bongo drums and cymbals. A truly moving and thoroughly in the mood experience.
The church gradually became packed and the some people started coughing in the pew in front of Titi so we decided to leave after receiving Holy Communion. The host was dipped in wine and offered directly to the mouth. I tried to initially receive it in my palm first but was denied the acknowledgement. Hopefully Titi did not catch any extra germs when he received the host, I thought.
After mass, we started walking back to the center of Jaffe and stopped at a bakery where bread of all sizes and types and pizza slices streamed endlessly out of three ovens and efficiently passed onto waiting patrons. We got a smattering of everything that looked and smelled good and ducked into a cab back to the hotel where lunch was summarily served by Lek and Mimi. I taught Nicky ‘kitchen patrol’ (I washed and he dried) the night before and he good-naturedly resumed his initiated role.
Ti developed a sore throat in the afternoon to accompany the insistent nagging pain. He mentioned it to the attending doctor/intern.
At about 3am Sunday, the pains in the throat and butt was so severe that he could not sleep. The hospital could not do anything about it because his protocol had not been drawn up and no drugs could be prescribed as such. Patience in this case was accompanied by extreme discomfort.
Sunday morning saw Titi’s extreme discomfort continue amidst the start of the work week for the hospital – government run and consequently a mad-house of activity with a shortage of doctors and nurses overwhelmed by the onslaught of patients post-weekend medical needs. He was sent downstairs in a wheelchair to the ground floor to see an ENT specialist for his nagging throat pains.
The patience here was evident as he was made to wait for his turn amidst scores of patients with coughing and sniffling fits.
He had developed a fever of 38degC accompanied with chills (the teeth chattering kind) which precipitated a flurry of blood checks and pain-reducing drugs. His protocol will start in the planning stages when his condition is stable and fever-free. The main things to accomplish for the next few days is to check from his blood and bone-marrow that he is free from sepsis and internal infection (one and the same, I think), a ‘hickson’ (central line) be installed and protocol method selected among the attending staff. Accordingly, the road map outlining and explaining his protocol would have to wait.
However, my donor protocol would begin on Christmas day- would be four days of Neupogen shots (2/day – 12 hours apart) and 2 days of apheresis (external harvesting) PLUS a bone marrow harvest for good measure (not looking forward to that last one).
In the pm, after his bone marrow biopsy, he remained blurry and out of touch for a while and even though hungry, could not bring himself to swallow because of the pain in the throat. He was given additional and new external gel appliques and drugs to try to counter the growing pains. After dinner, about 8pm, Lek called me to say that Titi’s fever had returned and the attending doctors seemed nonchalant on hearing about Titi’s developing condition.
( I was previously ‘advised’ by Prof. Slavin that afternoon for being too strident in my advocacy of Titi’s treatment and that he had every confidence in his team as well as their experience in dealing with such critical cases and that we were ‘on the same team’.)
Nevertheless, I went over to his room after the phone call and found him shaking and shivering and wanting to know what his temperature was. I walked back out into the nurses’ station and found all of them sitting around, some seemingly busy, others obviously relaxing. One of them, Ashraf, got up after I told them of Titi’s condition, went inside and asked whether Titi can take solids. Very difficult was the answer, so Ashraf said he would come back with a liquid drug and stuck a thermometer under his left armpit and said that he would be back in TEN minutes to look at it. In the meantime, Titi had draped and kicked off layers of blankets, went to the bathroom (with the thermometer in tow) and layered and kicked off some more blankets. About twenty minutes in total, I estimated.
I walked outside. There was only one nurse around, Ashraf was no where – presumably to get the drugs, I told myself. I walked inside and took out the thermometer and glanced at it. 40.5degC was what I saw.
In a daze, I walked outside with the thermometer and told the nurse the reading. Oh, was the calm reply and for the next endless 3-5 minutes, I watched her try to find Ashraf, dialed a few numbers and hung up on all of them. NO interest in answering whatever the condition, I thought. Just then, Ashraf came through the doors with another intern, break over, ten minutes (or was it over twenty) up and back to work. He grunted when I showed him the thermometer and proceeded to go inside to administer the pain killer he had . Titi had requested to take Tylenol but he had to take what was prescribed.
After a while, Titi was peacefully resting and I left, all numbed from the extremely high temperature reading and the seemingly non-chalance of the hospital staff. They have seen and experienced so much more of this than I, so I thought and that is why things seemed under control to them while all hell was breaking loose in my mind.
Lek was supposed to call re new developments, if any, later on tonight.
It is now 4:30 am. Think I will draw down that second cup of coffee and walk over to see how he rested.
Does patience have any limits?
Sabai, sabai