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MY JOURNEY WITH MUM AND MDS

In loving memory of my beloved mum,

ROSE LIM SWEE KEOK


(18th October 1933 – 23rd August 2008)

by

Ilene Ong

Isaiah 54:10

"Though the mountains be shaken and the hills be removed,


Yet my unfailing love for you will not be shaken
Nor my covenant of peace be removed,
Says the Lord, who has compassion on you."

This *Journal and the information contained herein is restricted and/or privileged information and is intended only for confidential presentation at my discretion. None of the materials provided in this Journal may be
used, reproduced or transmitted, in any form or by any means, electronic or mechanical, including recording or the use of any information storage and retrieval system, without my written permission. The
information provided herein is my personal views and should not be construed as personal medical advice. I shall not be held responsible as to the accuracy of the facts of the disease. The information published is
not intended to replace, supplant or augment a consultation with a health professional.
I accept no liability whatsoever, whether it was caused by:
1. Accessing or other related actions to this Journal.
2. Any links, and/or materials provided/attached to this Journal.
I disclaim any and all liability for injury or other damages that could result from use of the information obtained from this Journal.
*For purpose of definition in this disclaimer clause, "My Journey with Mum and MDS" is referred to as the "Journal" in this context.

Ilene Ong Siew Hwa


MUM'S FIRST HEALTH SCREENING

What was supposed to be a fine Friday turned out to be the beginning of our

worst nightmare! It was 14th of April 2006, when my sister went to do her

routine health screening at one of the esteem private hospital in Selangor

and told mum to come along to have hers done as well since mum had

never had a full and thorough health screening done in her entire life! All

mum does is she goes diligently for her yearly tests of the normal blood

profile which is not as comprehensive as the health screening carried out by

the hospital. So little did we realize that this simple routine check up would

soon create mayhem in our life.

Shortly thereafter, the result of my sister's profile was received by us minus

mum's and that got us worried. Assured mum not to worry as probably the

results are being sent out in batches and we should be receiving hers in due

course. However, after waiting patiently for the results for over two weeks, I

began to ponder as to the delay in getting them. Soon, I was consumed

with anxiety and so on 5th May 2006 I called to enquire on the results of

mum's screening. My call was transferred by the doctor in attendance and

referred to an oncologist in respect of my mum's blood profile results.

Suddenly, my hands and lips began to quiver and my heart started to flutter

at a rapid pace. I told the doctor not to transfer my call but I would instead

come in personally to pick up the results.


Hurriedly, I raced myself towards the hospital to seek clarifications and was

given the run about as the consultant physician revealed that the blood

results indicates some abnormality and in order not to deliver a wrong

diagnosis has requested that more tests be carried out on my mum.

Subsequently, an appointment to see the oncologist was fixed for 13th May

2006. I had my reservations in sending mum to the oncologist so I

approached the oncologist first for verification. Undoubtedly the oncologist

asked that mum be referred to the hematologist instead and so an

appointment was scheduled for 10th May 2006 with the hematologist.

This being my first encounter, I wasn't sure which hematologist to choose

from and left it at the discretion of the consultant physician. Never had my

mum or I envisage that from here on, the string of appointments with the

hematologist would be invariable for the next couple of years.

Prior to seeing the hematologist, mum had to do a complete blood count

test and the evaluation will be made known to us when we see the

hematologist. A complete blood count is a procedure in which blood is

collected by inserting a needle into a vein and allowing the blood to flow

into a tube. The blood sample is sent to the laboratory and the red blood

cells, white blood cells and platelets are counted.

Below is a chart reflecting the components of the complete blood count.

Components of the Complete Blood Count (CBC)

© 2005 American Association for Clinical Chemistry 1 Downloaded from Lab Tests Online
(http://www.labtestsonline.org)

TEST NAME MEASURING USE INCREASED/DECREASE


D
WBC White Blood Cell Total number The body uses WBCs May be increased with
of WBCs to fight infection. infections,
per volume of Each type has a inflammation, cancer,
blood (sum slightly different job. leukemia; decreased
of all types of WBC is measured with some
WBCs) to make sure there medications (such as
are a sufficient methotrexate), some
number and to autoimmune
help detect and conditions, some
monitor conditions severe infections,
that lead to bone marrow failure,
increases or and congenital
decreases in total marrow aplasia
WBCs, and/or to (marrow doesn't
increases in one or develop normally).
more types of
% Neutrophil/Band/ Measures the This is a dynamic
WBCs.
Neutrophil Seg percentage of population that varies
% Lymphs Lymphocyte each of 5 somewhat from day to
% Mono Monocyte types of day depending on
% Eos Eosinophil WBC, what is going on in the
% Baso Basophil compared to body. Significant
total WBC increases in particular
count types are associated
Neutrophil Neutrophil/Band/ Measures the with different
Seg actual temporary/acute
Lymphs Lymphocyte number of and/or chronic
Mono Monocyte each type of conditions. An
Eos Eosinophil WBC per example of this is the
Baso Basophil volume of increased number of
blood. lymphocytes seen with
lymphocytic leukemia.
For more information
see Blood Smear and
WBC.
RBC Red Blood Cell Total number Primarily Decreased with
of RBCs per measured to anemia; increased
volume of detect decreased when too many made
blood. production, and with fluid loss due
increased loss, or to diarrhea,
increased dehydration, burns.
Hgb Hemoglobin Total amount destruction of Mirrors RBC results.
of oxygen RBCs, to detect
carrying anemia and
protein inside sometimes to help
RBCs detect
Hct Hematocrit Percentage of erythrocytosis (too Mirrors RBC results.
blood volume many RBCs).
made up of
RBCs (solid
versus liquid
portion of
blood).
MCV Mean Average size The size of RBCs Increased with B12
Corpuscular of RBCs. and the average and Folate deficiency,
Volume amount of decreased with iron
hemoglobin inside deficiency and
them can help thalassemia.
MCH Mean Average classify different Mirrors MCV results.
Corpuscular amount types of anemia.
Hemoglobin (weight) of
hemoglobin
inside each
RBC.
MCHC Mean Average May be decreased
Corpuscular concentration when MCV is
Hemoglobin (%) of decreased, increases
Concentration hemoglobin limited to amount of
inside each Hgb that will fit inside
RBC. a RBC.
RDW RBC Distribution Measures Help classify Increased RDW
Width variation in anemia. indicates mixed
size of RBCs. population of RBCs,
Most normal immature RBCs tend
RBCs are the to be larger.
same size.
Platelet Platelet Total number Determine whether Decreased or
of platelets number is adequate increased with
per volume of to control bleeding. conditions that affect
blood. platelet production;
Platelets are decreased when
special cell greater numbers used,
fragments as with bleeding;
that are decreased with some
important in inherited disorders
blood (such as Wiskott-
clotting. Aldrich, Bernard-
Soulier), with Systemic
lupus erythematosus,
pernicious anemia,
hypersplenism (spleen
takes too many out of
circulation), Leukemia,
and chemotherapy.
MPV Mean Platelet Average size Help evaluate Vary with platelet
Volume of platelets decreased platelets. production; younger
platelets are larger
than older ones.
FIRST VISIT TO THE HEMATOLOGIST

Teasingly mum said she was dying. There we were, seated with our arms

folded and anxiously waiting for our turn to be called into the doctor's room.

The waiting to be called into the hematologist room suddenly became an

ordeal as we waited and waited and waited. This being our first visit, mum

and I were so tensed up and feeling so uneasy and worried and I could feel

my heart beat drumming through the chest. We didn't know what to expect

and my mind ran through slides after slides of "what if". Suddenly I felt so

cold and began to shiver. Turning to mum, I could see that she too was

trembling away. Don't know whether it was because of the cold air from the

air-conditioning or was it because of our nervousness.


"Madam ..............you may go in now”. Ah, finally, I said, it's our turn after

almost three hours of waiting. The nurse showed us into the room and with

wavering lips, we greeted each other and took our seats on the other side of

the desk. I find it strange that doctors no longer wear that white gown

anymore as how I have often visualize them to be. I suppose this is to

differentiate them from the medical officers.

Fortunately the temperature in the room was to our liking but the

atmosphere was tensed. The hematologist looked at the results of the

blood test and then looked at mum and told her that the results are

indicative of mum being anemic as her haemoglobin count was low and so

are her red blood cells. Very politely the doctor then guided mum to the

small little corner of his room where mum was asked to lie down so as to

facilitate him to do a general physical examination on mum to look out for

any unusual bruises or lumps. He then went over the medical history with

mum asking questions as to whether mum would gasp for air when doing

chores like taking the stairs, whether she has a good appetite, whether

among her siblings any have been diagnosed with cancer and so forth.

Whilst the doctor was busy examining mum, I on the other hand was busy

examining his room. On the shelves sits souvenirs from all over the world

and standing in between them were "Thank You" cards, probably from

patients who have recovered. Posters of flowers hung on one side of the

wall and another side stood a tall vase arranged with artificial orchids in it.
Hmmm….I thought to myself, this hematologist must have a penchant for

orchids.

The doctor returned to the desk where I was seated while mum got dressed.

Once seated, the doctor turned to mum and told her that he would like for

her to be admitted the very same day so that he could do a thorough

investigation. He didn't reveal on the degree of mum's illness but instead

hospitalization was warranted. Mum and I were taken aback as we were not

prepared for such scenario. I then asked what sort of thorough investigation

he proposes to do and he said "a bone marrow aspiration". With eyes wide

open, I stared at the doctor and then quickly turned towards mum and saw

mum's shocking expression. For a moment, the room was quiet with mum

and I still trying to grasp what was just said. "Is there a necessity to do a

bone marrow test on my mum" I asked. The doctor then explained further

as to why he needed to do it. With worrying face, mum asked the doctor

how is it done as she has heard from friends that it's rather painful. The

doctor was very assuring and comforted mum. Regardless, mum was

hesitant to be subjected to such test. I then explained to mum the need in

having to do this test and I was firm in making the decision for her. It is

easy for me to say as I am not the one going under the knife. I felt so sorry

for mum thereafter.

We asked the doctor for permission to return home to pack mum's personal

belongings. The walk to the car park was a very quiet one and so too was

the drive home as neither mum nor I were in the mood to talk and each one
of us had our mind working on overdrive thinking what would the

consequences be. My hands and legs were trembling with fear when I

entered the car and my concentration was poor. I couldn't make out any

sense of what the hematologist was saying earlier in his clinic and neither

could mum. Along the way, I stopped at one of the hawkers centre for lunch

as we suddenly realized that we had not had eaten anything since the time

we woke up. Mum daren't take her breakfast in case the blood test requires

her to be fasting. I ordered chee cheong fun with prawn paste for mum and

fried kway teow for me. Lunch was hard to swallow and neither mum nor I

could finish our meal.

BONE MARROW ASPIRATION

Upon our return to the private hospital, I was taught the routine of checking

in a patient. This being my first, I was unsure as to the hospital's

requirements and the facilities available. I had difficulty in the selection of

either a single bedded room or a twin sharing room for mum. I wanted

mum to have a comfortable room during her stay in the hospital. Mum

being mum, she saw my predicament and prompted me to go for the

cheaper one, of course.

Mum, besides having been admitted to the hospital for purposes of child

birth many, many years ago, had never had the need to be admitted again

into any hospital for anything else and this admission would be mum's first

after so many years. Mum takes very good care of her health and seldom
do we hear mum complaining that she's not feeling well and therefore there

was no need for any sort of hospitalization until now.

Shortly after settling down in the ward, we waited patiently for the

hematologist to come by. Not knowing when he would drop in, I daren't

leave mum's bedside. By the time the doctor came, it was towards late

afternoon. The hematologist whom we met at the clinic conducted the bone

marrow aspiration himself. The whole procedure was carried out in the

ward itself under localized anesthetic. I was under the impression that a

bone marrow test was a massive kind of operation that needed to be done

in the operating theatre by the surgeon! I was not allowed in the room

when the procedure was being carried out and so I waited paving up and

down the corridor in front of mum's room. The smell of the alcohol and

iodine solutions was so strong and emitted along the corridor. In less than

30 minutes, the whole procedure was over and I saw the blood stained

glasses being brought out.

Bone marrow aspiration (extracted from MedlinePlus)


A small amount of bone marrow is removed during a bone marrow aspiration. The procedure is
uncomfortable, but can be tolerated by both children and adults. The marrow can be studied to
determine the cause of anemia, the presence of leukemia or other malignancy, or the presence of some
"storage diseases" in which abnormal metabolic products are stored in certain bone marrow cells
The above illustration is taken from the web page of MedlinePlus

Blood and bone marrow tests are used to detect and diagnose

myelodysplastic syndromes ("MDS") and periodic bone marrow exams are

often carried out over time to determine if MDS has progressed. The patient

reclines on either their stomach or the side, whichever position is most

comfortable. The doctor feels for the bony protrusion on the right or left

back side of the hip. This site, not the spine, is the location used for the

bone marrow examination of MDS patients. The doctor swabs the skin with

iodine and places a sterile towel and drape over the area to reduce the risk

of bacterial infection.

A small area of the skin is numbed and a long hollow needle is inserted into

the hipbone to remove tissues from the bone marrow, blood and a small

piece of bone for examination under a microscope to look for abnormal


cells. It is common for patients to experience a twinge of pain when the

needle is inserted.

The doctor told me that mum would be asleep for at least the next 2 to 3

hours but when I went in to check on her, she was already half awake and

she told me to go home to get some rest. Obviously rest was the last thing

on my mind. Disobediently, I sat quietly on the chair next to her bedside

and started to text to my sister and brother on mum's condition.

Later that night, the doctor came by and advised that two pints of blood

would be transfused for mum and barring any unforeseen circumstances,

mum should be able to go home the next day.

Discharging mum from the hospital and going home the next day received

mixed reactions from mum and me. Relieved and delighted that mum is

able to go home so soon and that mum did not feel any pain whatsoever

from the insertion done. But we both couldn't help worrying on what the

results would reveal at our next appointment.


MUM'S SECOND APPOINTMENT

20th May 2006 our next appointment with the hematologist. This time mum

and I came prepared with our sweaters, managed to organize our time to

have our breakfast first at the coffee shop in the hospital and then return to

the waiting lounge. Anxiously we waited for our turn to go in. Once inside,

the hematologist broke the news to us saying that mum is confirmed

suffering from MYELODYSPLASTIC SYNDROME. In short, it's often

referred to as MDS - Myelodysplastic (myelo-bone marrow, dysplastic-

abnormal growth).

MYELODYSPLASTIC SYNDROME
MDS is a group of diseases in which the production of blood cells by the

bone marrow is disrupted. The bone marrow in myelodysplastic syndrome

is typically more active than normal and yet the number of blood cells in the

circulation is reduced. This is because most of the cells being produced in

the bone marrow are defective and are destroyed before they leave the

bone marrow to enter the blood stream. The hallmark of the

myelodysplastic syndrome is the combination of a hyperactive marrow with

low blood cell counts. A reduction in numbers of all types of blood cell is

called pancytopaenia. The other common feature of the myelodysplastic

syndrome is abnormality in the appearance of the bone marrow and blood

cells. The myelodysplastic syndromes are difficult to treat because of the

unusual combination of hyperactive marrow but inadequate blood cell


production. The only treatment considered potentially curative is a donor

stem cell transplant in younger and fitter patients. Unfortunately my mum

is too old for this to be an option. Men are more likely than women to

develop MDS. This is most marked in the typical older patient group. Cases

occurring in younger patients are more evenly distributed between men and

women. The median age at diagnosis is between 65 and 75 years, over

90% of patients are over 50 years at the time of diagnosis. Some doctors

classify MDS as a form of cancer and term it as pre-leukemia as the

abnormal bone marrow cells eventually progress into acute myeloid

leukemia. There are five types of myelodysplastic syndrome. These are:

Refractory anaemia ("RA")

Refractory anaemia with ring sideroblasts ("RARS")

Refractory anaemia with excess blasts ("RAEB")

Refractory anaemia with excess blasts in transformation ("RAEB-t")

Chronic myelomonocytic leukaemia ("CMML")

The following are being explained in detail as this is the progress my mum is

heading towards.

REFRACTORY ANAEMIA (RA)

The marrow cells that produce red cells appear abnormal. The white cell and

platelet producing cells may also appear abnormal but the proportion of

primitive cells (blast cells) is not significantly increased. The main clinical
feature is anemia, which is usually mild to moderate but can be severe;

often the red cells have a larger average size (mean cell volume or MCV)

than normal. The number of white cells and/or platelets may be lower than

normal.

RA accounts for about 30-45% of cases. About 10% of cases of RA will

transform to acute leukemia. Some patients with RA survive well in excess

of five or even ten years, but the average survival ranges from two to five

years.

REFRACTORY ANAEMIA WITH EXCESS BLASTS (RAEB)

In this form there is an increase in precursor blood cells (called blasts) in the

marrow. Normal bone marrow contains up to about 5% blast cells.

Patients with RAEB have between 5-20% blast cells in their bone marrow.

Patients with this form are more likely to have reduced numbers of platelets

and/or white cells as well as red cells in their blood. This form accounts for

about 15% of cases and has a median survival of about a year.

About 40% of patients with RAEB will go on to develop acute leukemia.

REFRACTORY ANAEMIA WITH EXCESS BLASTS IN TRANSFORMATION (RAEB-t)


The findings in these patients are similar to those in RAEB but with a higher

proportion of blasts (20-30%) in the marrow. This form accounts for about 5-

15% of cases. It has recently been proposed that these patients should now

be classified as having acute myeloid leukemia. The rate of conversion to

overt leukemia (over 30% blasts in the marrow) is high (between 60-75%)

and the treatment is similar to that used for acute myeloid leukemia.

The median survival is six months or less but chemotherapy, with or without

stem cell transplantation, produces prolonged survival in some cases.

CHRONIC MYELOMONCYTIC LEUKAEMIA (CMML)

In CMML the red cell precursors usually appear abnormal. The defining

feature of CMML is that the number of one type of white cells (monocytes) in

the blood is increased to more than 1x109/litre. The marrow may or may not

contain an increased proportion of blast cells. There may be anemia and/or

low platelets.

CMML is considered to be a form of myelodysplastic syndrome because the

bone marrow shows features similar to those seen in other forms of the

disease, but it also shows features of the related diseases known as the

myeloproliferative disorders. The new WHO classification moves CMML into

a separate category called the Myelodysplastic/Myeloproliferative Disorders.


CMML accounts for approximately 15% of myelodysplastic syndromes.

Transformation of CMML to acute leukemia happens in a similar way to

other forms of myelodysplastic syndrome. Median survival is of the order of

12-18 months. Between 15-30% of patients progress to acute leukaemia.

My mum showed no signs or symptoms and was diagnosed by chance as a

result of the routine health screening. It was only after being queried by the

hematologist at the initial appointment did she then tell us she has been

feeling giddy and anemic at times. Anemia tends to lead to fatigue and

shortness of breath even on light exertion. In about 80% of patients this is

simple anemia, whilst about 20% present with infections or bleeding which

my mum is now suffering from it. Infections are usually either bacterial

pneumonia or skin or throat abscesses.

Not all patients will receive active treatment straight away because in most

cases there is no evidence that early treatment influences overall survival

duration. Patients who are not starting treatment will have regular check-

ups. This is often referred to as watch-and-wait.

The only treatment approach considered to be potentially curative is a

donor stem cell transplant or chemotherapy. Unfortunately due to my

mum's age, this form of treatment cannot be initiated. Thus blood

transfusions were her only option.


The myelodysplastic syndromes are chronic disorders mainly affecting older

patients. The cause of this disease remains unknown at this time. The most

important aspects of the follow-up of patients with MDS are regular checks

for evidence of disease progression or of transformation to acute myeloid

leukemia.

The treatment for a high proportion of patients is supportive care which has

few or no side effects. If patients receive large numbers of blood

transfusions there is a danger that they may accumulate dangerously high

levels of iron. MDS is a puzzling, life threatening set of disorders for which

there are no easy cures or quick remedies.

RESEARCH

Upon this shocking discovery, naturally the internet was my source of help.

I needed to get as much information as possible and from as many sources

as I can. I need to learn about mum's condition and its treatment as well as

the medications and their side effects. I browsed the numerous websites to

gain the appropriate information but reading the abundance articles by

research institutes and specialist hospitals gave rise to more confusion and

ultimately I became sick from the migraine attacks. I even subscribed for

reading materials from the MDS Foundation in the United States of America.

The reports were incomprehensible to a normal non-medical person like me.


They were so technical. The medical dictionaries from the web sites

became my virtual consultants.


COMPLICATIONS

In view of her MDS condition, over time, mum soon developed other

complications like very low white cells and declining platelet counts and she

became susceptible to infections and was treated with antibiotics and

steroids. Mum suffered from drip site infection on the dorsum of her right

hand. She had petechiae on her trunk and was feeling giddy. Mum was

bleeding from duodenal ulcers. Then she had herpes gortr and cellulitis.

At one point, the doctor concluded by saying that my mum's

management is problematic in view of increased susceptibility to

infection, immune thrombocytopenia plus worsening MDS status

Then the worst happened. It was the second day of Chinese New Year 2007

when mum fell terribly ill and I thought to myself, oh no, this is it. Her time

has now come to leave us all. We rushed mum to the private hospital. The

entourage consisting of my sister, my brother and his family, my cousin and

his family and me and my family were all seen waiting patiently in the

emergency ward. The fear of loosing mum at that time did cross my mind.

Mum's haemoglobin count drifted downwards and was given blood

transfusion. The hematologist did another bone marrow aspiration and the

results showed her MDS status has worsened but he managed to maintain

mum by introducing steroid (prednisolone 30mg daily). This was to be


mum's longest stay in the hospital thus far. The entire clan of friends and

relatives came to visit mum and the string of visitors was endless. Our

family celebrated the significant seventh day of the Chinese New Year with

mum in her hospital room and also "Chap Goh Mei", the fifteenth (and the

last) day of the Chinese New Year celebration. From her room we had a

good view of fireworks being displayed from one of the nearby shopping

malls. Watching the fireworks with mum from the hospital bed sent a tinge

of nostalgia flowing through me. This will definitely be a Chinese New Year

that I will never forget.

MUM'S STATUS

Mum was due for her check up on 3rd March 2007 but, regrettably, before

the appointed date, mum had to be readmitted again as her platelet count

dropped. She was of course given platelet transfusions amongst the tray

full of medications being prescribed both orally as well as by way of

intravenous. She was discharged only on 11th March followed by check ups

on 17th and 24th March.

In a span of one year, mum had undergone 2 bone marrow procedures, an

endoscope, and endless amount of blood and platelet transfusions and not

forgetting the dozens of medication that she has consumed orally and also

the drugs administered via intravenous. I drew up a chart to record the

readings of the blood count. A chart to record her admissions and the

length of stay in the hospital and, not forgetting, a chart reflecting the
amount spent at each out patient consultation and admission. Mum too

kept a record of her own.

Over time, I managed to learn and understand my mum's condition better

and appreciated the treatment given to my mum by the hematologist at the

private hospital.

The private hospital where my mum was admitted to soon became my

mum's 'second home' and in no time mum was a familiar face on the floor

where she was warded and the nurses soon grew fond of her. To some, she

was being referred to as the "teacher". This is because her doctor warned

the nurses "don't pray, pray this elderly lady's English is powerful and you

nurses could learn a thing or two about Queen's English from her!" I have

lost count on the number of times that mum has been in and out of the

hospital since she was first diagnosed with MDS. There were times when I

felt it pointless to inform the relatives anymore.

The sentence that the hematologist concluded that, my mum's condition is

problematic plus worsening MDS status, kept ringing at the back of my

mind. It is truly disheartening when you read such a report especially after

what mum went through - the number of times the needles were pricked

into her thin and fragile hands. Mum has very fine veins which proved to be

problematic when trying to set in the line for blood and/or platelet

transfusions.
LOOKING AT ALTERNATIVES

On the recommendation of the hematologist here, together with my sister,

we sought a second opinion from a hematologist at the Singapore General

Hospital and was given an appointment for the 2nd April 2007.

My brother on the other hand sought help from Chinese physicians. We

were all so desperate looking for a cure for mum. Relatives and friends

willingly came forward to guide us and advised us in addition to the advice

of other general practitioners too. However, the more we hear the more

confused we all became! Unsolicited advice came gushing in! The motives

are many. Some tried to 'sell' health products, some asked to seek

alternative treatments and some tried to convince mum to switch religion.

I realized the time has now come where my mum can no longer live alone.

Getting a foreign maid, I felt, was the best care option but my mum

disagrees and so does my brother. Each time I brought up the subject of

the maid, my conversation which started off very well would soon lead to

confrontation and hurt feelings.

When your loved ones fall ill, suddenly your entire routine lifestyle changes

overnight as in my case. Since my mum was diagnosed with MDS in May

2006, my entire routine lifestyle became so unmanageable. Life for me now


is full of uncertainty. I could no longer make any plans ahead for fear of

having to rush my mum to the hospital any time. These days, faced with

such uncertainties, my mind and body have undergone turmoil which I

wasn't prepared for. There were days when I could feel happiness

enveloping me but then, all too soon, the feeling of sadness soon set in. My

emotional feelings were on 'high gear'. What a 'topsy turvy' ride I'm on! It

is truly an emotional roller coaster ride. But with the passing days, I learned

to regain control of myself to stay focus. However, I am still trying my level

best to come to term with the fact that after a long and arduous fight

there's nothing much the doctors could do for my mum and that death will

soon meet her. It is heart wrenching to witness my mum being debilitated

by this disease. This illness is unfair! Why did you pick my mum to be the

victim?!

After a year and a half of being treated at the private hospital, mum now

has to revert to seeking treatment from one of the government hospitals as

it has gone beyond our means to pay for the exorbitant bills of the private

hospital. As much as we would love to grant mum the comfort of a private

hospital which, undoubtedly offers more personalized attention, we have to

face the reality that money doesn't grow on trees!

As mum grew weaker, she realized the need in having a maid to attend to

the house chores and her meals. I live quite a distant from mum's place

and shamefully could not help mum in caring for her meals. Fortunately for

us all, my brother, who cooks very well I must say, took great care of mum's
meals. So when the maid arrived, mum was relieved of the house chores

and found she could spend more time visiting friends and shopping malls

during the times when she was feeling on top of the world.

Finally I'm able to see mum feeling a lot better these days although she still

needs her frequent transfusions of blood and platelet. I think the switch

from a private hospital to a government hospital was timely and has done

her a lot of good. So you see, it's not always the most expensive things or

places that would offer you the best of quality. But I must admit here that

the beds and the wards in government hospitals need 100% make over! So,

in terms of comfort, where do we go? Private or government? In terms of

treatment, do we have faith in the government hospitals? Not forgetting too

that the response time is not as expeditious as that of a private sector! We

just have to tolerate and endure the system run by the government

hospital. We shouldn't be complaining as we need not have to pay a single

cent towards hospital charges as mum, being a government servant, this is

one of its perks being offered!

TAKING A BREAK

Seeing that mum is more stabilized now, I took mum for a short holiday to

her hometown, Penang. My cousins, together with my sister and my family,

we spent the most wonderful and memorable holiday in Penang with mum.

Mum was, as usual, her jovial self and during that short stay in Penang, we
indulged ourselves to the hawkers' spread! Eating like as though there's no

tomorrow! Mum's appetite was just incredible! I'm so glad for mum that

she's feeling so much better.

After we got home from one of our most joyous and splendid holiday, mum

kept herself busy by shopping at the hypermarkets! That's the way to go

mum!! While it is heart wrenching and exhausting, these are precious

moments to behold and treasure for a lifetime.

SAYING THANK YOU

Time and again I had to thank each and every friends and relatives for their

concerns and kind thoughts and at times even going beyond their way to

render any assistance of any kind whether it is just a word of comfort or

prayers or just being there for us lending their support which really meant a

lot to me and I truly appreciate them all. No words can express how

pleasantly surprise and touch I am by all these kind gestures. I do wish to

thank everyone who has come to visit my mum, whether at the hospital or

at home. You all have been of great moral support. Also to the many

bloggers out there whom I don't even know who you are or how you look

like but yet you went to the extent of offering your help unconditionally!

(When mum started feeling ill, I started to blog about her illness with a hope

of educating as many people as possible about MDS). THANK YOU ALL SO

VERY MUCH!
All of you have helped me through this difficult time in one way or the other,

more than you know. I appeal to everyone out there to continue to pray for

my mum's health as we continue our battle. If scientifically we can't win

this battle, perhaps spiritually our own mind and body are able to. It's a

battle which my mum and I know it's a no win situation but we would still

like to continue steering head on. So for now, us, the children, together

with my mum, shall continue our journey into the twilight zone to discover

what else could be in store for us. A true test from the One above!

UNDERSTANDING THE ILLNESS

Although the counts on her red cells and platelets continue to drop, my

mum is spiritually strong. If you were to hear her speak over the phone, you

would never have guessed that the lady on the other end is a very ill person

as she sounds very strong and vibrant. I am truly glad that mum possesses

strong will power and wants to fight this battle. There were times of course

when she wanted to give all up and I can't blame her for thinking that way

as it is truly painful to see her suffering. But I think that when she see us,

her children, who have and will continue to go all out to seek the very best

treatment for her, I reckon she too is determine to join in the fight together.

Mum is very well informed of the illness she's suffering from as we told the

doctors not to hide anything from mum. She didn't want to be spared the

punches and was totally involved in all the medical and nursing

management.
Through this episode, I had mustered enough knowledge to understand

everything relating to blood! I was even praised by the blood bank

personnel for having understood how and what sort of blood, plasma and

platelet were being processed and transfused in one educational sitting as

compared to the nurses who have been working there for years!

LEUKEMIA STAGE

Then, just when I thought my mum was doing comfortably by getting her

normal transfusions and oral medication, on 8th May 2008, the doctor

informed mum that her MDS has now transformed into the leukemia stage.

It was 2 years ago on 10th May 2006 when mum was first diagnosed with

MDS. Mum's determination to fight against her illness for 2 years is a battle

half won. As the doctor needed to meet the family members, I took time off

from work and met the doctors on 13th May 2008 which was mum's next

appointment date.

I was told of mum's condition. Her condition is now classified as Acute

Myeloid Leukemia (AML). AML is a cancer characterized by the rapid

proliferation of abnormal cells which accumulate in the bone marrow and

interfere with the production of abnormal cells. AML is the most common

acute leukemia affecting adults and its incidence increases with age,

however it can also occur in children. It is most prevalent in people in their


60s and older. Actually, this disorder is more common in males than in

females.

The symptoms of AML are caused by replacement of normal bone marrow

with leukemic cells, resulting in a drop in red blood cells, platelets and

normal white blood cells.

The doctor proposed his suggested treatment for mum and recommended

that mum undergo a course of chemotherapy plus the administration of a

drug called myelotarg. Gemtuzumab (myelotarg) is an antibody drug-

targeted chemotherapy. Without treatment mum had only about 3 to 4

months to live. It was the most miserable day of my life upon hearing this

news and my emotions got the better of me. Mum on the other hand was

putting on a very strong front and I really salute her for being able to uphold

herself so well. The journey home from the hospital was a very quiet one

with neither of us speaking up. I bawled out even more when the track from

the CD player played "Millennium Prayers" by Cliff Richard. I was so

overwhelmed by the song that the tears streamed endlessly down my

cheeks.

That day, we were invited by my aunt and uncle to drop over at their place

for lunch after the check up was over and upon reaching their place, I just

burst out crying uncontrollably like a little child. I just don't know why and

as hard as I tried to control myself, the tears just refused to stop flowing.

For that, another of my aunt who was also there told me that I shouldn't cry
in front of mum but instead should be strong for mum. It is easy for one to

say. It is only when you're faced with compelling news of your loved ones,

you'll understand how it really feels.

At that time my feelings were mixed with anger, disappointments and

frustrations. Anguish turns to aggression. Anger emerges and I felt

powerless and helpless. That night I started to 'bargain' with God for more

time and miracle. I felt God had abandoned me.

I felt so disappointed and frustrated because after having spent so much

time and money in getting treated, the illness got the better of her.

Notwithstanding the fact that we've been cautioned right from the initial

stage that mum will succumb to this leukemia stage but deep down inside

me I was praying and hoping for miracles to happen and that mum's

lifespan could be stretched further than the anticipated 3 years. But alas,

this is not to be the case. My mind was so mixed up with thoughts of denial

followed by fear. I could not accept this to be the conclusion.

SOUL SEARCHING

I needed to know more about this disease and the best treatment strategy

but somehow I just couldn't place things in perspective. This revelation

made it so hard for me to think of the things that I need to know and to ask

the doctor. I kept thinking that this isn't happening to my mum. Surely
there is some mistake. Maybe things can still get better. Not wanting to

believe and accept what the doctor at the government hospital had

diagnosed, needless to say, I made an appointment on 15th May 2008 to see

mum's very first hematologist at the private hospital for a second opinion.

This time, I made sure I wrote down all the questions that I needed to have

the answers to prior to seeing the hematologist. So on that appointed day

with the hematologist, both mum and I, with our fingers tightly crossed,

listened intensely to what he had to say and our hopes were dashed when

he too concurs with the views of the earlier doctor at the government

hospital. The only consolation we had from this hematologist was that he

displayed more compassion and both mum and I were very at ease with him

and the advice given by him was more coherent and he proposed that mum

just undergo the chemotherapy first without the consumption of the

myelotarg. Myelotarg could be administered later once the cancer cells

have been destroyed. After all said and done, the doctor concluded by

saying that it is the patient's desire that we had to respect. With this

reasoning, both mum and I were more comfortable and prepared to

endeavor the chemotherapy.

My sis then started mum on a detox programme with a view of getting mum

fit and ready for the chemo at the government hospital which was

scheduled for 22nd May 2008.

When 22nd May 2008 arrived, eagerly with optimism, both mum and I

approached the hematologist at the government hospital and put forward


our proposal to just carry out the chemo minus the myelotarg. However, all

our hopes and inspirations were dashed when we were told that, judging

from the results of her blood test taken that morning, mum will not be able

to withstand the entire chemo procedure and would like to call it off.

Oh how my heart sank to the bottom of my stomach and suddenly I felt so

sick. I felt so deceited. The hematologist who was attending to mum then

called for the head of the team and together they presented the most

unpleasant news to us. I wasn't prepared to accept their explanations and

on mum's intervention, the head hematologist made a telephone call to

mum's hematologist at the private hospital. They spoke at length and

thereafter reverted with the same conclusion that mum would be very much

better off enjoying quality life rather than spending the balance of her life in

misery undergoing the chemo procedure and staying in the hospital for the

rest of her life. Chemotherapy for my mum is not beneficial because the

side effects outweigh the minimal benefits. As mum is diagnosed as MDS

that have progressed to AML, she would be less responsive to chemo than a

typical case of AML. Complications from chemo may hasten death,

particularly in a person of mum's age.

After a long and arduous journey, the news of mum having no curative

options was very painful to digest. Acceptance and letting go is difficult.

In the presence of the two doctors, I wasn't embarrassed when I just let the

tears flowed down freely onto my cheeks and sniffing away at the mucous
that were dripping from the nostrils. The more the doctors consoled me, the

more the tears came. Mum on the other hand, who was seated on the other

side of the doctor's desk, was very composed and displayed no sentiments

whatsoever. It then occurred to me that, perhaps due to mum's hearing

problem, she did not manage to hear the entire conversation which to me is

a blessing as I did not wish for her to hear such unpleasant news.

Nevertheless, seeing the appalling emotions displayed by me, mum would

have deduced what had transpired.

I felt so hopeless and helpless as there was nothing I could do to persuade

the doctors to treat her back to good health and present back to me my

bubbly mummy. The thought of loosing mum in a few months or, if we are

blessed, a year or so, was beyond comprehension. Death is imminent. I

was consumed with worry and anxiety while I tried to brace myself for the

impending death and resulting in life changes.

From here onwards, according to the doctors, palliative care seems to be

the best course of action. Mum would continue to receive transfusions of

the blood and/or platelet whenever the need arises. The doctors will

continue to monitor mum on a weekly basis now. The doctors have warned

that mum will be very susceptible to viral infections and when that happens,

the doctors shall treat her accordingly. The doctors have prescribed

immense dosage of medication for mum to consume to assist in the

maintenance. There is nothing much the doctors can do for mum now and

it is now all up to The Almighty One above.


Coping with this final situation is undoubtedly very difficult. I was

surrounded by fear that one day my phone would ring and the choked voice

on the other end would tell me my mum's chapter on earth has ended.

But when does one actually stop seeking treatment? Is it ever appropriate

to draw the line and say there's nothing left to do but just sit back and wait

for doom's day? Not being able to undergo the chemo but reverting to

palliative care doesn't seem much of a choice to me. Between my sister

and me, we continued to explore the internet on how best to maximize our

time with mum and we found a website informing the workings of certain

drugs that were used on patients with similar illness as mum and has

proven to be effective. Told mum to highlight to the doctor's attention the

names of these drugs on her next appointment which was scheduled for 29 th

May 2008 and to check if mum could be prescribed the same. Regrettably,

busy as he is, the doctor was impatient in sparing that extra few minutes

with mum and just dismisses her off by saying that those drugs would kill

her instead. I would like to belief that the doctor understood the name of

the drugs and its curative functions before saying that those drugs would kill

and not treat.

To assure myself, I told mum that I would like to bring her back to the

private hospital for a second opinion on the drugs but mum said "no" and I

felt even more powerless. Mum told me to let her go and that she doesn't
wish to continue further as she is now getting very tired on seeking

treatments to prolong her life span on earth.

MUM'S BAPTISM

5th June 2008, was the next check-up. At this check-up, mum’s platelets

reading revealed a single digit - 1! Bearing in mind that the minimum

reading of a healthy person for platelet should be 150! So transfusions of

platelet as well as blood were arranged to be given to mum. However,

before arrangements for transfusions could be made, mum started to bleed

and had to be admitted for observations. But 24 hours later, not even one

doctor could tell us the cause of her bleeding while mum lay lying on the

bed bleeding away! This is the ugly picture of being in a government

hospital.

Three days have since passed and mum continues to bleed profusely.

Doctors are still uncertain over the cause of the bleeding. One, it could be

an ulcer somewhere or two, it could be due to the low platelet. As the days

passed I could see mum turning more pale and weak despite all the blood

and platelet transfusions being given. I think mum could sense that her

time on earth is coming to an end pretty soon and so she asked my brother

and sister as to whether they have any objection in her accepting Jesus

Christ as her Savior. Knowing how mum aspires to become a Roman

Catholic and in respecting her desires, both my brother and sister gave their
unconditional support. My brother then proceeded to contact my cousins

and aunts who are Christians to help with the baptism arrangements as

neither of us was familiar on the procedures.

So on Sunday night, 8th June 2008, mum was baptized a Roman Catholic by

Father Albert. Mum took the Holy Communion the following day. The

baptism was carried out from her hospital bed at University Hospital Kuala

Lumpur and was witnessed by mum's brother and sister and their spouse

and family and not forgetting us, mum's children. It was very emotional for

me and my brother and sister. That night I could see mum was at peace

and slept well. The following day, mum continued to sleep most of the time

waking up only for nature's call. She didn't talk much that day. However,

on 10th June 2008 mum was looking and feeling much better as compared to

the previous days. She had an endoscope done and the results revealed

that there are no traces of ulcers. Therefore the source of the bleeding

continues to remain a mystery!

Mum had not had any solid food nor was allowed a sip of water since her

dinner on Friday, 6th June 2008. Despite being given all the ions and drips,

mum complains of having hunger pang!

After having spent 15 days in the University Hospital and seeing that the

doctors were not making any further progress to perk up mum's condition, I

discharged mum on Thursday night the 19th of June 2008. It was slightly

past 10 p.m. when we reached home and mum went straight to her bed. I
could see that mum was still very weak and tired. After unpacking all the

bags and ensuring things have been placed in order I left mum's place and

went home.

ANTICIPATORY GRIEF

The following day when I called to check on mum, it was the maid who

answered all my calls as mum was asleep most of the time when I called in.

I was told by the maid that mum continues to bleed and also, she's throwing

up whatever food or drink that she consumes. When I finally got round to

speaking to mum, I told mum that I would like to bring her back to the

hospital as she cannot be vomiting uncontrollably but mum refuses to be

admitted again. I told mum that I would bring her to the private hospital

instead and that too she refuses me! So when my sis came home for the

weekend, I told her to persuade mum to be admitted and my sis too got the

same tone of answer. Between my sister and I we persevere to get mum to

be admitted and finally, mum agreed. On the morning of Saturday, 21st June

2008, we rushed mum to the private hospital where she's already a familiar

sight with the doctor and nurses. We were told by the doctor at the

emergency ward that mum is very dehydrated and very promptly they

treated mum with utmost urgency much to the delight of my mum, my sis

and I. So much of compassion was displayed by the nurses and doctors

over here as compared to the University Hospital!


Seeing mum in pain causes me pain. The journey of letting go is agonizing.

I must embrace and express negative emotions as well as positive one. I

pray, with mum's unbridled love, relief and eventual acceptance will soothe

my heart and soul, help me cope and eventually heal me.

Here I would like to share the topic of ANTICIPATORY GRIEF which I stumbled

upon whilst scrolling through the internet sourcing for medical help. I

wasn't aware that there is such a thing called "anticipatory grief". The

description befits exactly what I am enduring currently.

WHAT IS ANTICIPATORY GRIEF?


By Beth Erickson, Ph.D.

Anticipatory grief is what happens when you know there will be a loss, but it has not yet occurred.
This is what happens when a loved one is dying, and both the patient and their loved ones have
time to prepare. Anticipatory grief is both the easiest and the hardest kind of grief to experience.
It is marked by “stop and go” signals. With these losses, the handwriting is on the wall... but it
doesn’t make coping with it easier.

Because you have time to prepare, you can begin to envision and rehearse your life without the
person who is dying. This gift of time offers the opportunity to resolve any regrets you may have
with or about your loved one. You can take this time to make amends with your loved one, and to
tell him or her how you feel about them. Your loved one can do the same with you, and other
family members. You can let go of anger or guilt. You also have the chance for delicate
conversations about such sensitive topics as death, end of life wishes, and after-death
preparation. You also have an opportunity to get information about your family.

One obvious drawback to anticipatory grief is witnessing your loved one’s struggle with death. As
the loved one’s condition worsens, you may grieve with each downturn. You may experience
feeling a sense of helplessness as your loved one fights for life. You may feel as if you are living
with a pit in your stomach that won’t go away as you await death’s arrival. In addition, sometimes
when people are facing death, their own fear, pain, or anger may make their personality seem to
change from Dr. Jekyll to Mr. Hyde overnight or even from one moment to the next. In my own
case, when cancer ravaged my mother’s brain, she became psychotic and for a time didn’t know
me. This was devastating to me. Thank goodness, her behavior did not last until the end of her
life, and she regained her normal personality. But for some families, the ones we love continue to
have behavioral changes as they face the end of life. This can be challenging, and healthcare
professionals such as hospice workers or counselors may be able to help.

Perhaps the most difficult challenge with anticipatory grief is that it is difficult to tolerate living in a
state of emergency for an extended period of time. The mind can only tolerate so much angst.
When a loved one is dying, the “emergency” and angst period may seem to last forever. You do
not want your loved one’s death to come more quickly, yet your mind may not be able to handle
any prolongation. Your mind may blank out self-protectively.

But eventually, a reminder or a new episode with the loved one sets off the grief again. Here,
intense grief comes in waves alternating with times of numbness. These “stop and go” signals
allow you to shut down emotionally. This insulates you before the next event occurs. Then, your
grief begins anew. These flat periods can be looked at as natural, normal, and welcome respite
from the agony of the loss. They do not mean you are cold or uncaring.

Anticipatory grief is normal. It is an important part of coping with a loved one’s extended illness. It
prepares both you and your loved one for the end of life. Unfortunately, it may also be an
emotional roller coaster. If you can expect that and understand that, you can help yourself cope
with it. Don’t feel guilty about anything you may be feeling. Instead, make the best out of each
moment you can spend with your loved one, and focus on the positives, such as forgiveness,
settling affairs, and helping your loved one make plans for their passing.

CARING FOR MUM

Mum then moved to stay with my brother as it would be easier for my

brother to keep an eye on mum especially where her meals are concerned

and should there be a need for any emergency, he's able to give mum

immediate attention. Even my niece and nephew soon became experts at

taking care of their grandma. They would have the cable station tune to the

melodies of those golden oldies which mum enjoyed listening to and mum

would then eventually fall asleep on the couch! Mum would alternate

staying with my brother and returning to her own home. Nothing beats

staying in your very own house and sleeping on your very own bed mum

would say. All these shuttling between mum's own home and my brother's

place and sometimes my aunt's place soon created confusions to mum as

each time she wakes up, she needed a few minutes to orient herself as to

where she's waking up from!


Mum now needs to take her blood and platelet transfusions every week as

her counts on her red blood cell, haemoglobin and platelet continues to drop

lower and lower. The duty of having to send mum for her weekly check ups

was being shared between my brother and I since my sister works outside of

the country, it is not feasible and practical having her to return home ever

so often.

Soon, I found myself being sapped off of whatever energy I had left. The

tiredness was overwhelming. My back started to hurt badly too. It was

during this time that I decided to take a month off from work on a no-pay

basis to spend more time with mum and to attend to all her needs.

Between my brother and I, we had to do the drips procedure onto mum

while being at home. The nurses from the private hospital taught me how

and I had to learn the steps before they are comfortable in discharging mum

from the hospital. You see, when mum was admitted for dehydration,

bottles and bottles of sodium chloride with glucose were being administered

to mum plus the intervention of neutralities and vitamins. As she gained

her strength, mum then asked to be discharged. But the doctor was

hesitant as mum still needs to be continually on the sodium chloride and

glucose intravenous. So what the hematologist did was, he asked the

radiologist to implant into mum's left arm a catheter leaving the openings

for easy administration by non-medical people like me.


As mum was staying with my brother periodically, I had to teach my brother

how to apply the drips and soon my brother and I became experts at it!

Then when mum went for her check-up at the private hospital, the doctor

was pleased with the job so far and jokingly I asked him to graduate me with

a nursing certificate and that brought a smile to mum's tired face.

I moved down to Klang to stay with my mum. Caregiving became my life.

Vacations and all other outside activities disappeared. During the times

when I was taking care of mum, mum and I endured an array of emotions.

It is not easy taking care of a sick person and especially when it is your

loved one and someone who's very close to your heart. Mum displayed

resistance towards the change in her diet. As much as I wanted mum to

have a nourishing meal, she begs for hawker stuffs like, curry laksa, assam

laksa, nasi lemak, cendol and the list goes on. I then remembered what all

the doctors advised me, that is, to please give mum whatever she yearns for. Let her

enjoy the balance days of her life to the fullest. With that in mind, I drove mum (she

asked to come along) to get her assam laksa, to get her cendol, to get her

sugar cane water etc…..

My guilt was enormous seeing mum indulging in this kind of food stuff but

on the other hand, I was glad that I managed to let mum have a satisfying

meal which, much to my delight, pleases mum very much.

At times I felt so hurt when mum would reject my help and keeps on

pestering me to return to the office. All I wanted to do during these times is


simply spend time with my mum such as going out to eat or just walking

about the shopping malls.

In between her napping times, mum would tell me stories of bygone days.

Whilst mum reminiscences, I held onto my emotions tightly as images of

those happier days came flashing in and I started thinking about my dad.

Some how we all have the tendency to reflect back occasionally to those

wonderful moments and I hope to be able to pass down such tales to my

daughter one fine day.

On mum's insistence, I finally went back to work. Not a day goes by without

me calling mum to check on her. I did question myself as to whether we are

all doing everything we can for mum? Have we all taken the right direction?

Mum being mum, she felt very uncomfortable in troubling us children in

sending her for her weekly blood and platelet transfusions. We then worked

out a plan in that prior to her appointment date until she finishes her

transfusions, mum would stay at my aunt's place which is very nearby to

where the government hospital is. I then arranged for a taxi to carry mum

to and fro the house and hospital. The plan was very well received by all

and things looked promising on the first and second day. However, in the

early hours of Thursday the 21st of August 2008, mum trip and fell when

returning to her bed from the toilet. Mum sustained injury to her left eye

and was bleeding profusely from above the eye brow and its surrounding

area. The maids together with my aunt, hurriedly applied ice cold packs
and the bleeding subsequently stop. Mum hid this from me and I only knew

of it when my aunt called to tell me the next day.

LAST FEW HOURS

Then as usual, when 8 a.m. arrived for her appointment to take the blood

transfusion, mum kept to the schedule and proceeded to the hospital with

that purplish blue/black eye. Mum had the presence of mind to request for

an x-ray of her skull to see whether there were any cracks. Fortunately the

result came back negatively. When I asked why wasn't an MRI done and the

hematologist says that mum showed no signs of internal bleeding and

therefore the need doesn't arise. However, mum requested that she be

taken off from all those transfusions of blood and platelet as she felt she has

had enough of all these and it's time to let her go. Upon hearing this, the

doctor again summoned for family members to come by. My brother and I

immediately went and we were counseled by the doctor from the palliative

care centre. Obviously we told the doctor not to abide mum's request but

instead to continue with the regimen. Despondently, mum lost her

argument on this point.

Early morning on Friday the 22nd of August 2008, mum called me at work to

say that she's vomiting blood. I in turn rang my brother to check on mum.

When my brother saw how weak mum was, he immediately rang for the

ambulance to send mum back to the government hospital whilst I rushed


from my place of work. When I saw mum at the trauma room and seeing

how severe her condition was, my heart started to race at a fast pace and

my legs felt numb. Deep down inside me I knew mum's race was soon to be

over.

Mum kept calling out to me and repeating the words, "I'm going to … "

However, regrettably, that sentence was never completed and mum then

lost consciousness. Forlornly, the medical officer, neurosurgeon and

hematologist told us that nothing else can be done for mum anymore. It's

just a matter of time now. An MRI of her brain showed that she's

hemorrhaging in the brain and to think that it was only the day before when

the hematologist told me that mum displayed no symptom of such and thus

there was no necessity to carry out an MRI of the brain!

With quivering lips, I made that dreadful phone call to my sister to return

home immediately. Then, together with my brother, we started calling the

rest of the family members and relatives to inform them of mum's critical

condition and they all came to soothe mum and offered mum words of

comfort and encouragement and prayers. Oh how we prayed for a miracle

to happen. Miracles do happen? I remembered someone once told me that

and also, I read it from somewhere too.

Although mum could no longer open her eyes or talk, subconsciously she

could comprehend what was being said to her as tears were seen streaming
from her eyes. In fact, mum could even wriggle her toes when we tickled

her feet.

Sadness overwhelmed each one of us as we watch mum slip away bit by bit

and we begin the agonizing journey of letting go. I kept telling myself that

this isn't happening. Surely there is some mistake. Maybe things can still

get better. I felt responsible for mum being in this condition and muttered

to myself that I should have got the ambulance to send mum to the private

hospital instead. Perhaps with their expertise and efficiency, mum could be

spared from this situation.

I spent Friday night in the hospital with mum. For the past two years

whenever mum was admitted to the hospital, never had I spent a night in

the hospital with mum. But somehow, for this particular Friday night the

22nd of August 2008, I decided otherwise. Throughout the night, mum had

fever but the medical officer on duty daren't prescribe any medication to

bring the fever down for fear that she might worsen the situation. So on

half-hourly intermission, I applied cold packs onto mum's forehead. I felt so

lonely and empty in that cold ward. By early next morning when I tried to

lift mum up to change her diaper and clothing, I noticed how frail, listless

and helpless mum was. Upon a closer look, I noticed blood was trickling out

from one of her nostril and also, mum no longer respond when I tickled her

feet. When the hematologist checked on mum, he said that such is the

scenario and the only thing he could do now is to transfuse mum with

platelet with the view to stop the bleeding.


My sister then proposed that mum be brought home seeing that nothing

else is being done for mum. I was quite doubtful whether that was a wise

choice. I didn't want to be living a life of regret knowing that I have

deprived mum of any care and attention. I then spoke to mum, not knowing

whether she can hear me or not, to give me an indication if she wants to go

home. Shockingly all of a sudden mum gave out a loud grunt! Respecting

her wish to return home, an ambulance was subsequently arranged to ferry

mum home and oxygen tanks were ordered and placed readily in her

bedroom back home.

Mum reached home around 4 p.m. (or thereabout). Her breathing became

very erratic. At times it would just stop momentarily. My brother and his

family, my sister, my aunts and friends were all with mum during this

difficult time. It is so heart wrenching to see mum in this condition

preparing for her final departure from this earth. No matter how unwilling

we were, we still have to let mum go.

I remember mum telling me repeatedly that I have to learn to let her go and

be strong to envision my life without her. I would then tell mum that I will

let her go when the time comes. It is easy for others to tell you but how

does one come to term in allowing this to happen to the one most dear and

nearest to your heart?


Each one of us took time to express our love for mum and, eventually with a

heavy heart, I told mum that I am now prepared to let her go and assured

her that I will be strong to face the days ahead. This last special moment

will ALWAYS be remembered. Then at about 7:19 p.m. on Saturday the 23rd

of August 2008, mum inhaled her last breath.

I know that one day mum would leave me and I thought I was prepared for

the eventuality but how wrong I was. Oh how much I miss her. It's such an

aching loss. There is definitely no way to make up for the loss of my

dearest mum especially when during these past two years our connection as

mother and daughter grew dearer and richer. Loosing mum is so painful. I

will of course cherish those wonderful moments we had together and I hope

these memories will provide comfort in my days ahead.

Mum, you have fought a good fight, you have finished the course, you
have kept the faith – 2 Tim 4:7

TO THOSE I LOVED AND THOSE WHO LOVED ME

When I am gone, release me and let me go,


I have so many things to see and do.
You mustn't tie yourself to me with tears
Be happy for these precious years.
I gave to you my love, you can only guess,
How much you gave to me in happiness
I thank you for the love you each have shown
But now it's time I traveled on alone.
So grieve a while for me, if grieve you must
It's only for a while that we must part
So bless the memories within your heart
I won't be far away, for life goes on
So if you need me, call and I will come
Though you can't see me or touch me, I'll be near
And if you listen with your heart, you'll hear
All of my love around you soft and clear
And then, when you must come this way alone
I'll greet you with a smile and say, "welcome home".
LEGACY OF LOVE
A wife, a mother, a grandma too
This is the legacy we have from you
You taught us love and how to share
You gave us strength, you gave us might
A stronger person would be hard to find
And in your heart, you were always kind
You showed us love in one way or another
Not just as a wife not just as a mother
For all of us you gave your best
Now the time has come for you to rest
So go in peace, you've earned your sleep
Your love in our hearts we'll eternally keep

OUR MEMORIES ARE OUR KEEPSAKES


TO WHICH WE'LL NEVER PART
GOD HAS YOU IN HIS KEEPING
WE HAVE YOU IN OUR HEARTS

The journey of life may not be the way you want it to be always. God,
please grant me the serenity to accept the things I cannot change.
Courage to change the things I can and the wisdom to know the
difference.
HAPPY BIRTHDAY MUM

SATURDAY, OCTOBER 18, 2008

LETTER TO MUM

Dear Mum,

57 days ago, I sat by your side and wept while I said farewell to you. You
know, that was the hardest thing of all – letting you go. It hurts, mum. I still
can't believe that you're no longer around for me to talk to, for me to
confide my problems to, for me to share news of joy or news of the latest
happenings around the world. I miss hearing your stories on the happening
scene of your friends and relatives who would only confide in you with their
problems. I miss teasing you and running my fingers through those fine snowy
white hairs of yours. I miss running errands for you. You have left a gaping
hole in my life mum.

Mum, I know your illness has sapped you off whatever energy you had left
and I can understand why you kept telling me to let you go. I know you have
always emphasized to me to be strong and to learn how to carry on my life
without you. I know that death is a fact of life and when that happens, I can't
do anything to change that. People around me tell me that it's alright to cry
and grieve and with each passing day, the hurt becomes lesser and lesser.
But that doesn't mean that I will forget and stop missing you. Well, mum, I'm
trying very hard to be strong and to continue living my life without you but,
you can rest assure that my love for you will never die. I will always cherish
those wonderful moments we had together and remember the fun times we
had together.

Mum, it's been raining practically everyday since you left this earthly world.
The sky is weeping alongside with me. I'm devoid of your love and guidance.
Mum, you brought us up very well and your children have been the centre of
admiration by your church members as well as by your sisters and brothers.
I, together with my brother and my sister, are very proud and fortunate to
have a mum like you. Everyone we meet have the most nicest things to say
about you and in their own ways, they miss you too. You've done a very good
job and now it's time for you to take that much awaited rest in the home of
your Father. Deep down inside me, I could sense that you're very happy and
at ease without anymore pain or sufferings. Knowing how happy you are
makes me happy too.
Today, we, your children together with your brother and sister and sister-in-
law and your favorite nephew (or rather, 'God-son'), remembering how much
you meant to us, visited you at the columbarium to celebrate your birthday.
A birthday which you had made plans with your brothers and sisters but
unfortunately, with time running against you, it is such a disappointment the
plan could not materialize. Mum, did you see the sumptuous spread prepared
by your son, my brother? I hope you had enjoyed them all as much as we had
thereafter. We are truly blessed to have a brother who can cook so well!

HAPPY 75th BIRTHDAY MUM!

Love you always,


From your daughter who is still trying very hard to be strong!

QUOTE:

In the bible, King Solomon wrote that there is a season in our lives. So true
it is. A time to love, a time to laugh and a time to cry. A time to be born, a
time to die, a time to heal, a time to mourn and a time to dance, etc, etc.
God's timing is always right. Whatever we go through in life, whether happy
or sad, there is a purpose....and though many a times we cannot understand
but when we reflect back, we may one day understand.