2 day before surgery

I am glad that we have made the shift to the new surgeon. Yesterday,he and his team made time to answer all my queries after consultationhours. He encourages us to do some outdoor activities with him before the surgery. At home, we also made time to talk to Samuel about the impending adjustments he has to live with. He has put up such courageous front. It pains my heart to know he may have to give up vigorous sports eghis favourite football. However, must trust GOD to open anotherdoor when he closes one. He is also anxious to get back to his schoolwork once he misses his friends and wants to join them soonin school. Prayer requests: Surgeon highlighted that once the tumour is removed, it will be sentto the pathologist for further tests. Pray for complete removal of tumour to be possible so that no othermeans of removal is required. Test results with 90% and above cancer cells dead, will indicate we will carry on 1st line of chemotherapy. On theother hand, we need to take 2nd line of treatment that is more vigorous. Please pray for favourable yet accurate prognosis as the 'MOP-OUT''treatment is vital. Pray for Samuel to be victorious in HIM to get UP and walk... and we will all stand by him strong to encourage him...

Prayers for protection and good preparation

From our pre-surgical tests, we discover that Samuel has some nasal

infection. SGH will prescribe some cream for this but advised that

Samuel goes outdoor for morning sunshine will help.

Pray that this infection will clear within the next 5 days before the

operation and Samuel will be obedient to go out.

Also, we are advised to be admitted 1 day before surgery on 30/11 to

better prepare Samuel for the surgery. We are expected to stay in hospital

for 2 weeks.

New hospital exercises very strict visitor register policy and at any one day,

only 4 visitors can visit. We were told that Samuel may be

put in the High dependency ward for monitoring

(no visitors except parents) before he is transferred back to the ward.

Prayer items :

Pray that God will be a reality and a stronghold in this time especially for

Samuel. We will make adequate preparation for this operation and recovery

plan.

Pray for God's mercy and grace to divinely heal Samuel.

Pray that God will grant the new surgeon wisdom to do the right resection

to remove only what needs to be ''sarcrificed". Pray against all the risks as

mentioned in blog. Good teamwork and health for him and his team.

Pray for strong support for Samuel - His peace and presence to be felt by him

and strength too as anaesthesiologist has mentally prepared us that there may

a need for pain management after operation. God will grant him courage and

speedy recovery.

Pray that Samuel will have healthy appetite and God will provide ways to

provide good meals for him. Till now, he still does not take hospital food.

Details on proceeding with Surgery on 1 Dec

Thank God for directing our path in the past few days!

After 3 days of seeking for 2nd opinions, we have decided to
change surgeon for Sam's surgery in another restructured hospital.

Somehow, this change is very clear. He was recommended by a cellgroup
mate(cancer survivor treated by new surgeon before) on Friday evening
who also helped us book an appointment with him on Monday morning.
Saturday Evening, another sister sms us about seeking him out after
consulting an expert. Today, our KKH oncologist confirmed the selection,
also citing him as her 1st choice from a list of 3.

This surgeon opined that we should take the 2nd option that is to do a
surgical removal of the tumour with a maximised safe margin. This removal
will include a big chunk of muscles, peroneal nerve and part of fibula in the 'tumour' zone based on 1st MRI. He explained that some 'chemo-resistant'
cancer cells may still be existing which will not appear visibly in the
MRI scans.

Unfortunately, till now there is no sure way to ascertain their presence, and
research has indicated a high chance of recurrence. The survival rate
for recurrence will be low as he hightlighted that very high dosage of chemo
will be needed for treatment which sometimes can be fatally dangerous eg
some patients died from internal organ failure. To explain things simply,
he used the analogy of saving a house on fire and not saving any specific furnishing 1st.

We have decided to proceed with option 2 engaging this surgeon as he could
explain most questions, and there is this calm disposition about him. After checking Sam's latest bloodcount report, with the view to improve the counts
to minimise the risk of infection, he scheduled the surgery to be on 1st Dec 8 am.


Prayer requests:

Please pray for smooth and successful operation (estimated 3 hr). Against
all possible complications:
- bleeding;
- infection;
- neurovascular deficit to other nearby blood vessels and nerves;
- neurological deficits due to nerve;
- deep vein thrombosis;
- incomplete resection

Please peace and comfort for all of us, to gear up both physically,mentally for
this major operation.


Today, I met the father of the 8 year old girl who I shared some time back.
She had a huge tumour on her cheek which did not response to chemotherapy
at all.

A very terrible prognosis was given initally - all part of her lower jaw bone will have to be removed. Perhaps, her right eye might have to go as it was
suspected that the tumour may have expanded up there too. Complex reconstruction from her own leg bone was needed to replace the cheek
bone.

Her father shared that he surrendered all to GOD pleading for HIS mercy to
save her life. They proceeded with the surgery expecting the worst but somehow
with full assurance that GOD will take care of everything. After the 12 hour surgery, the surgeon revealed he had only removed the tumour and some soft issues.

Father praised GOD and thank HIM for providing them with the one of the best tumour surgeon in town and apparently the only one who could decide on the spot as to what is most suitable. He was told now, the surgeon does reseach only.

PTl!

2nd opinions from 2 encologists and 1 surgeon in private practice

Past few days, we have consulted 1 adult encologist , 1 child encologist and 1 surgeon,  all in private practice.

Both adult and child encologists opined that since there is lung metasize, amputation is of not much significance. A relapse is still possible.  They are concerned about the aftermath of trauma of child  losing leg.

Child encologist and surgeon opined that surgical removal of tumour with maximised safe margin may not be possible for leg or arm. Studied both MRI and MRI report  to confirm that ‘’cherry” tumour does not engulf the peroneal nerve at all. It is near but they does not rule out the possibility of removal of tumour without damaging the nerve.

Child encologist proposed ‘’varying-margins” surgery and  highlighted that it is possible to perform the surgery with a pathologist on site to help ascertain the extend of removal by testing removed tissue on site. If the small margin removed near the nerve is not clear, a possible localised radiation   may be administered later to eradiate the cancer cells. Surgeon highlighted that we must be mentally prepared for a footdrop issue much as he tried to prevent it. For details, see http://www.youtube.com/watch?v=J7-L9MFRXD8&NR=1.

Child encologist is concerned about the nodes previously existing in Samuel’s lungs, he proposed to explore the possibility of localised radiation to curb the possibility of relapse here. However, he stressed that like chemotherapy, we have to balance the risk of side effects involved in radiation too.

Child encologist  is very concerned that surgery has not taken place within last week. 4^th week after chemo as chemo drugs normally wear off after 3^rd week.

 The last chemotherapy was 17/10 and yet the surgery was scheduled on 5 Dec. Usually chemo will resume 2 weeks after surgery. If surgery is confirmed on 5 dec, it would mean the next chemo will be late Dec or even January. Thus, there will be a lapse of 2-3 weeks without any suppression of cancer cells. Also, he opined that Sam’s blood count is most ideal for surgery now. He is concerned about the 2 nodes during this period.  

5 Dec is not ideal also for another 2 reasons – our KKH surgeon will be overseas from 6 Dec till ? and our KKH encologist is on leave from Dec 1 to Dec 14.

The private surgeon is a ex-kkH surgeon who may be able to work with the KKH encologist. He wants us to seriously consult with our encologist as before making this decision.

Now, we have to seriously consider the change of surgeon or perhaps even change of hospital. Many issues to consider eg are the opinions correct and is the surgeon suitable? Transfer of case notes, stem cells collected...Etc

Plans for next few days

Monday morning, we are seeking another opinion from a surgeon cum encologist from another restructured hospital. Hopefully, his inputs will assist us in this decision making.

Late Tuesday afternoon, we are seeing our KKH encologist after she meet with our KKH surgeon.

Wed reversal to KKH surgeon?

Wed morning(tentative pending our confirmation to engage private surgeon)

Discuss further surgical details with private surgeon and mental preparation of surgery to Samuel by surgeon.

Thu afternoon(tentative pending our confirmation to engage private surgeon)

Also, due to exigency of the need for chemo, we have tentatively requested him to book facilities for surgery on Thursday afternoon.

Prayer requests
Please pray for HIS peace to be with us, we will trust and will hear HIS voice to guide us in this critical period.  Specifically for HIS joy and peace to comfort Samuel as he is clearly shaken... did not eat or sleep that well. As a matter of fact, he had fever that night after seeing the surgeon.

His provision of the right, suitable and kind surgeon on time for this critical surgery.

Report from Surgeon

Today, we did not receive favourable results from the Surgeon. Nonetheless, we want to thank GOD for shrinking the tumour from the size of the apple to size of a cherry and keeping us.

Surgeon propose 2 options and leave it to us to decide:

(1) amputation from below the knee :
      [work based on worst MRI result but safest]

He explained that even though the tumour has shrunk, the area it previously
covered may have already been ''contaminated" and no one can rule out
the existence of possible cancer cells there. Unfortunately, there is no
sure way to determine their existence(apparently, ewing sacroma works
differently from leukemia cancer cells which may be determined via blood test
etc) thus they may not show up in MRI and CT scans.

Thus, amputation is the safest way to prevent a relapse from the leg.



(2) Surgical removal of tumour (with a maximised safe margin) and fibula.
      [work based on latest MRI result]

No reconstruction needed for fibula but some blood vessels, muscles
and the peroneal nerve is still affected. Potentially, surgeon can graft his
blood vessels but there is no way he can graft the nerve.

With the loss of the nerve, Sam will lose his sensation of the top calf and
top part of foot and be unable to move his foot up and down.
 Also, he may have to wear a splint to hold his foot up as he walks.

Although there is no impact on the growth of the bones in his right leg,
in the long run, he will have ''big and small" legs. Potentially, may risk a
relapse here too.



We are tentatively scheduled for surgery on 5 Dec afternoon. Surgeon will not be in
town after this. He has given us another appointment next wed expecting
a decision by then.


Sam is a bit shaken when the surgeon mentioned about recent death of a
acquaintence and a currently dying case on relapse. He prefer to go for 1st option. 


We intend to seek 2nd opinion. Please pray for GOD to guard our
hearts and grant us his favour to direct us to choose HIS best for Samuel.
We really need to discern HIS choice in this matter.


We appreciate and understand the love and concern for Samuel and our family,
and hence the desire to have the latest update in his condition.
However, this is the most critical period for our family and we may need the
space and time to decide on the best option for Samuel. Thus, appreciate that
you may obtain the latest information from this blog and refrain from calling
us. Thank you for your love and concern for us!

Latest update of wed test results ...

Thank GOD, Samuel's CT scan remains clear.
As before, the encologist did not comment on the status of tumour
based on MRI scan, just that it has shrunk further.

Much to our dismay, absolutely no comment on positioning of tumour or
the X-ray result. Therefore, we have to commit these results to GOD
and the surgery proposal to be revealed in next Wed meeting.

She explained that the chemo drugs may wear off its effect by 3rd week
after our 6th chemo on 17/10. Therefore, it is vital that surgery takes place
within this month. Further chemo after this stage is not advisable as the cancer
cells may get used to the chemo drugs and be able to suppress their effects.

Please pray for COMPLETE removal of the tumour without any
complication as encologist explained that any remnant not removable
via surgery may have to be eradicated via radiation.

Prayer requests awaiting Tests and Surgery...

Looking back, we thank GOD for His faithfulness... the fact that we have come this far is a miracle in itself.

This next surgical phase is a major test of our faith... Pray that as a family we will be able to overcome, by using our faith and the authority He has given us to deliver us out of this storm.

We have been reading up on all the possible surgical options pending the result. For those of you who are interested, you may want to find out more from http://sarcomahelp.org/learning_center/ewings_sarcoma.html

Pray for God’s continual protection upon our family in particular Samuel will be fit enough for this coming surgery which according to encologist should be performed within this month.

Pray for favourable result from Wednesday tests. That is CT scan remains clear, MRI scans and Xray will reveal that the tumour has shrunk significantly, dislodging completely from his critical arteries, nerves and veins to render a simple tumour removal surgery.

Pray for COMPLETE removal of the tumour with sufficient additional cuff of normal issue without compromising the functionalities of his leg. We were informed that the removed tumour will also be sent for further biopsy to ascertain how much cancer cells are dead.  Pray for high percentage of this.

Pray that GOD will grant the surgeon wisdom  to perform HIS best option for this reconstructive surgery. In particular, we want to commit the reconstruction of the fractured fibula to HIM. Also GOD will show us CLEARLY the path we should take for this reconstruction surgery. Pray for safe surgery and against infections. Trusting GOD for His healing upon Samuel.  By HIS grace, Samuel will be to get well soon and walk on his own.

Pray that GOD will provide for HIS best for this surgery... we are praying for availability of experienced surgical team and ward A in the orthopaedic  ward.