Jonathan Ting Coping with CML

Best news of the day

2012-01-17T21:11:00.001+08:00

After almost a year on Tasigna, the doctor announced today that Ah Jon BCR-ABL isundetectable. So, Jonathan is in complete molecular remission. In simple term, his cancer cell is not detectable any more. This is the best news of the day.

Just a summary:
1. He was on Glivec until March last year. His BCR-ABL reading was 0.013
2. He was prescribed with Tasigna, Nilotinib. Supposed to take 800mg a day but we stick on to 400mg (200mg twice a day) after the initial 3 months trial.
3. He is now asked to stick to 200mg twice a day and may need to continue taking the drug for 5 more years. The key thing now is to ensure that this cell does not return.

There are many godly people praying for him. And I have to thank God for his healing. All praises be to Him! And thanks for all your prayers.

He is now on a new drug

2011-03-06T00:47:00.000+08:00

Ah Jon went for a review with Dr. Ng in Sime Darby Medical on Wednesday/Thursday, 2/3 March 2011. Dr. Ng think that he is suffering from Glivec intolerance due to his constant knee pain. The last time I reported that his knee pain was gone was in fact returned after only a week.
This time, he is given Tasigna, Nilotinib, a even more potent drug. I hope that he is not intolerance to this drug.

This drug is supposed to be better and is supposed to help him to achieve his molecular remission faster. His BCR/ABL result for end of last November was 0.133. The reading is supposed to be halved every three months. For him, he just missed the target by a small point.
Anyway, we keep our fingers crossed and pray that he will not suffer any serious reaction from his body. And that his knee pain will go away for good.
Cost wise, this drug will cost a staggering RM17K (US$5.1K) per month!! However, thanks to Novartis, they are giving 50% discount at the moment, which make it cheaper than Glivec, which cost nearly RM10K per month.
Please do pray for him that he will not suffer any adverse reaction, he will reach his molecular remission even faster and can be taken off the drug sooner.

Ah Jon Knee pain is gone!

2010-09-03T23:58:00.000+08:00

On 20 August 2010, Ah Jon got a virus infection of the stomach. On 21 Aug, he vomited for a day and had diarrhea for two days. On 21st Aug, he took a small pill, Metoclopramide 10 mg and three packages of Oral re hydration salts (ORS Plus). When his stomach problem is gone on the third day, he found that the pain on the knee is no more there. Until now, he didn't put on any plaster and only complain that he has minor pain.
Has the pills or re hydration salts helped him? Or is it a miracle or all his toxin in his body has been removed??

Updates

2010-05-07T09:12:00.002+08:00

it has been a long time since I last updated this. My apologies to those who are following this. For information, Ah Jon has gone to study Electrical and Electronics Engineering in Curtin technological University. He was busy doing a part time job while waiting for his results. He made some money from his job and I should say that his boss was very impressed with his IT skill.
Last month, he went to KL for more bone marrow test. He has achieved some remission and result has been encouraging.

Third Medical Review 2-3 Nov 2009

2009-12-22T23:55:00.003+08:00

We were in Sime Darby Medical Centre (Subang Jaya) on Monday for Ah Jon 3rd medical review. Thanks God that his overall blood test results have improved. So, he went through another round of bone marrow test. As usual, he was sedated and he did not remember anything on the whole the procedure. He slept for 1.5 hours and when we woke him up, ...
... he was in a daze! His first question was "Is it done?".
... and "I don't remember anything!"
He was very tired. By the time we came out of the centre, it was 6:30PM. We arrived at the center at 9:30AM, and went straight for a blood test. The result was out in 2 hours.
So far, there was no HLA match amongst the siblings and the doctor think that it is not good to go for transplant as the complication from the transplant can be far worse. Please pray for miracle now!
Update 22 Dec 2009: We just got the news from the doctor that he has achieved complete cytogenetic remission. This is the first miracle. Please continue to pray that his hematologic milestone (normalised blood) would be achieved soon. Also pray that he will ultimately achieve complete divine healing!

Bone Marrow Results

2009-12-19T00:43:00.003+08:00

I received an e-mail from our specialist in KL and he informed us that Ah Jon bone marrow test result has shown a complete cytogentic remission. This is a very good Christmas news for us. Now, the next milestone is hematologic. It must return to normal.
Please continue to pray for him so that he will receive complete healing from God.

Condolences

2009-10-18T22:34:00.006+08:00

My deepest condolences to the parents of Samuel Yii who passed away on Friday. It is sad that a boy that young (16 yrs) should leave. My friend related to me that Samuel told his parents that the angels came to fetch him back just before he passed away. It was peaceful.
Samuel is another Leukemia (AML) sufferer, gone for bone marrow transplant and survived for two years.
May he rest in peace. He will be missed by many.

Thomas said, "Unless I… put my finger where the nails were… I will not believe… (John 20:25 NIV). Jesus said "Reach out your hand… Stop doubting and believe" (John 20:27 NIV). Thomas asks the question we all ask when we're struggling, "If God is so good, why do I feel so bad? If His message is so clear, why am I confused? If He's in control, why do good people wrestle with gut-wrenching problems?"…
"Lord, believing isn't easy when I'm hurt and confused, and You are silent. Like Thomas, I want proof that You love me. Help me see beyond my desire for peace and comfort, beyond my doubts and unanswered questions, and grasp the truth of Your unfailing love and grace."

No Match

2009-10-11T23:45:00.002+08:00

Last week, my doctor in KL, Dr. Ng, broke the bad news to us... amongst the five siblings, there is no bone marrow match for Ah Jon.

I wasn't surprised because somehow, I have the intuition that there is no match. Perhaps, God has been asking me to trust Him more! This reminded me about the Israelite. God was leading them in everything they did .. war, protection, provision, healing, etc. Then His chosen people looked around and saw all the neighbors had kings, soldiers, beautiful palaces, etc. The neighbors showed off their wealth, etc. So, His chosen people pleaded with God to allow them to have a earthly figurehead. It seems that it is difficult for His people to trust a God whom they cannot see nor show to visiting dignitaries. God allowed and that was the beginning of the downfall of Israel.
We just have to trust Him more. There is no choice as there isn't one.
Please pray for Ah Jon. Ask God to show us His plan and direction.

Fever!

2009-09-28T23:14:00.002+08:00

Ah Jon had a fever yesterday. I think he had a chill when he went to take shower while in Limbang. Upon reaching home last night, his temperature was 38.5 degC!
Mummy was so concerned that he got H1N1! But thanks God that he took 1 gm of VitC + panadol last night. Esther helped to massage his leg and he went to take a shower.
This morning everything was ok. Thanks and praise be to our God!

Doctor's Review

2009-09-17T17:25:00.003+08:00

Ah Jon went to Normah today for his review. His fortnightly blood test can now be reduced to monthly test. Only problem now is his complain about pain in the joints, especially on the knee cap area. So, he has a detailed MRI scan of his knee bone. The specialist found that his condition is in good condition. I shall post again when I have more information.
The mum is in Kuching with him.

Ah Jon blood condition

2009-09-15T07:48:00.001+08:00

Ah Jon blood test has shown a general improvement over the last one. We hope for a complete remission in six months.
Tomorrow, he will go to Kuching with mummy for a review with doctor Lau. And mummy will see a specialist there to check out why there is a minute traces of blood in her urine over the last many years. As we are both going to retire soon, we might as well use our medical benefit to ensure that we retire healthy.
Ah Jon pain-in his-bone is still there. Some said that it is due to the shrinking of his bone due to the "expansion" due to the bone marrow. We have no idea whether this is true. Anyway, do continue t o pray for him that his pain will go off and his response to Gliveec will continue to be positive.

Ah Jon went for blood test again

2009-09-04T23:52:00.003+08:00

Ah Jon went for his fortnightly blood test yesterday. The result should be available by tomorrow. He complained that the needle used was a bit large. But how about the pain? He said... already got used!
I am concerned about his CK factor, ie, muscle enzyme. It has been increasingly steadily over the months. He complain today that the Ketotop has lost it effectiveness. So, his muscle pain is causing him some problem. Please do pray that his muscle pain will go away and that his body will get used to the drug and will not have adverse side effect.
I am planing to bring him to Kuching in two weeks for the specialist review. We cut the visit down from every fortnight to every 6 weeks.

Ah Jon in pain today

2009-08-11T23:00:00.003+08:00

Today, for some reason, Ah Jon didn't put on his usual Ketotop plaster. He went to class and came back limping. Then he skipped dinner and went to sleep. I realised that he was in pain but didn't know how painful it was.
Then I realised that tear came streaming down and only then I realised that he was in real pain. It was so painful that even the wind from the fan was hurting! So, he put on his plaster but because the pain already set in, the relieve won't come immediately.
I noticed that he loves to soak in hot bath while we were staying in hotel. So I cleaned up our bath tub and fill it up with hot water for him to soak in. Thanks God that the pain was relieved!
I also noticed from the blood test that his ESR has gone up. This is not good as it is showing sign of infection/inflamation. I think the pain and this ESR are related.
Do continue to pray for him. Ask God to reverse back his chromosome 9 and 22 as they are the culprit in all these problems!

Ah Jon received his medication today

2009-08-10T22:50:00.003+08:00

Ah Jon is now doing his fortnightly blood test in Miri. His last test, done last Thursday, showed not much changes in his readings.
Haemoglobin: 102 g/L showed a slight drop by 1 point
RBC: 3.28 drop from 3.35 (should increase)
White blood count is now 3.7x10^9/L, a drop of 0.1 point which is not good.
ESR has gone up to 28 which is not good. This is an indication of infection.

Three siblings had gone for HLA typing to see whether they are suitable as bone marrow donor. So far, none has matched. So, only two eldest girls left!

If you were to ask him how he felt, he will tell you that everything is ok. Thanks God that he continue to take the drug without fail. Only concern is that he is not drinking enough water.

Today, he got a stack of mask. This is just a prevention as Curtin is full of smog and also the threat from H1N1.

I thank all friends who have been very concerned about him.

Ah Jon is grounded today

2009-07-14T07:58:00.003+08:00

Yesterday, the doctor asked Ah Jon to stay for a night in hospital. But we told him that it is very inconvenient for us. So he let us do a "day care" at level one. After that, we were asked to let him rest in the hotel room to make sure that everything is ok.
So today, I will see how thing goes.... continue to pray for him. He needs to increase his weight and improves his appetite.

Third month milestone Review

2009-07-13T23:35:00.004+08:00

Third month milestone review has some important significant for Ah Jon. It means that he is on Glivec for three months and we are interested to see how well he has responded to the drug Glivec (Imatinib). The most important of all is the cytogenetic response. We prayed for a complete reversal of the translocation of chromosome 9 & 22
I started driving (with the aid of Garmin GPS) to the Sime Darby Medical Center in Subang just before 8:00AM. We arrived about 40 minutes later.

Timmy had his blood taken first. And when Jos turn came, we tried for more than 30 minutes without success. First he didn't want.... sudden backout. However, he finally agreed ... ... but because he didn't cooperate too well, his vein "collapsed" when the needle was inserted! So, on his right arm, he was pricked once. On left arm, he was pricked twice and finally got the blood. After that, Ah Jon had his blood taken also. By then it was 12:30 AM and we decided to go for lunch first as the result won't be available for another hour.

... Ah Jon ordered fried chicken set lunch, the boys ordered fried rice + egg. I have fried fish set lunch. Upon return to the clinic, we have the review done at about 2:00PM. There is nothing too significant about the blood test result. Just that his total white cell count has gone up to 3 which is just below the norm of 4-10.

Talking about bone marrow extraction would bring tears to Ah Jon eyes! It must be very painful. So he requested the doc to give him GA but the doc think that a sedation is sufficient. Behind this curtain was where all the bone marrow was harvested for test.

... many tubes of sample were taken.

He fell asleep and after 1+ hour, he was given a jab to wake him up. He couldn't remember a thing! That was what the doc told me.

... this is the mark of bone marrow extraction. No bath for tonight. Tomorrow he can remove the plaster. Another box of Glivec was given. This is the most expensive drug I know off! Thanks to the medical coverage by the company.

Three months milestone

2009-07-09T07:57:00.002+08:00

Jonathan will be travelling to KL together with Timothy and Joshua. The two small boys will have their blood taken for HLA typing in preparation for the bone marrow transplant.

So, we will travel on Saturday and return on Wednesday. We took an extra day in KL just in case that Jonathan was in pain as he will be having his bone marrow extract again for further analysis.

Pray that God have negated all sign of CML, his chromosome 9 and 22 have relocated back and everything is just perfect. Pray that there is no need for any bone marrow transplant and he is healed in Jesus Christ's name!

His last blood test results two week ago in Miri had shown that his total white blood cell count was down further. This also means that his immume system may be weaken. His red blood cell count also went down and this means that he will get tired easily.

God's Word Is Medicine

2009-07-06T23:29:00.001+08:00

Sharing from my friend Teresa Han:

God's Word is medicine — for any weakness or sickness in body, mind, finances, family, marriage, etc.

Whatever sickness or disease you suffer from, God's Word can cure it. God's Word is effective for any condition. It works as a preventative as well as a cure. There is no cost and no danger of taking an overdose.

Like any medicine, God's Word must be taken to be effective. It will not work sitting on the shelf. And it has to be taken according to the directions.

But if you will follow God's directions as faithfully as you would follow the directions of a human doctor, you will see wonderful results.

Here are the directions:

PROVERBS 4:20-23 NKJ

20 My son, give attention to my words; incline your ear to my sayings.

21 Do not let them depart from your eyes; keep them in the midst of your heart;

22 For they are life to those who find them, and health to all their flesh.

23 Keep your heart with all diligence, for out of it spring the issues of life.

In verse 22 the Hebrew word translated health is translated as medicine in some translations.

PSALM 107:20 NKJ

20 He sent His word and healed them, And delivered them from their destructions.

God's Word will heal. It is full of God's power and carries the authority of God who spoke it.

JOHN 8:31-32 NKJ

31 Then Jesus said to those Jews who believed Him, "If you abide in My word, you are My disciples indeed.

32 "And you shall know the truth, and the truth shall make you free."

You have the guarantee of Jesus — His Word will produce freedom.

But, you must abide, or continue in His Word. You must feed it in until you know that you know that you know the truth. Then you will act on that truth — and it will make you free.

God's medicine works by taking His Word into your being. You do that by listening to the Word, reading the Word, and speaking the Word.

You must fill your thoughts with the Word of God. The more of God's medicine you take, the better off you will be.

SAY THIS: I will take God's medicine daily and it will bring healing into my life.

Blood test

2009-06-28T15:58:00.004+08:00

Sunday 28-June-2009 Day 93
Every fortnight, Ah Jon has to face the needle to draw his blood. He is getting used to the pain already.
Haih... when is this going to be over? I just pray for a miracle to happen.
Notice his long hair... I asked him to cut it but he said, wait for Janice to return before cutting it. He wanted to show it to her.
So for the time being, he has to face this chair every fortnight.
We spoke to his hematologist, Dr. Ng on Thursday about his persistence pain in the bone and muscle. He is concerned that this may be due to his intolerance to the drug Glivec. We are very concerned about this.
We shall be visiting him on 13 July 2009 again.

He Went for semester exam

2009-06-23T07:36:00.003+08:00

23-June-2009 Day 88

Yesterday, his semester exam had started. He told me that for this whole week, he has exam. I hope he can do well.

We found out that after taking just one Lyrica Pregabalin, the pain in the joints went away for about 4 days. Then the pain started to return last Friday just after I told his doctor the drug is effective. Anyway, one capsule lasted him 4 days is already very good because some people do not even respond to the treatment.
So, he took another of those capsule last weekend. I hope that it can continue to be effective.

High spirit today!

2009-06-17T23:00:00.002+08:00

17-June-2009 Day 82

The drug has done the trick! He took only one capsule so far and his pain in the joint has not returned! This is very good. I forgot to mention that he also use the medicated plaster over the joint.
Today, he is all over the place! Not depressing any more.
Praise the Lord! Just pray that his complete blood profile will return to normal as soon as possible.

Pain all over

2009-06-16T22:46:00.002+08:00

16-June-2009 Day 81

Yesterday, Ah Jon had quite severe pain all over his joints, especially, on his two arms. I saw that he was miserable! While in Normah, he was referred to a neurologist and she prescribed pregabalin for him just in case he needed it.
So, last night, he took just one of these capsules. Today, he said that all his pain is now gone! Praise the Lord for that!
So he is very active today!

Review in Kuching

2009-06-14T21:42:00.003+08:00

13-June-2009 Day 78

I accompanied Ah Jon to Kuching yesterday for his fortnightly review.
He is feeling cold all the time which is a little bit of a concern. So doctor think that we must do it objectively and check his temperature every few hours. We measured his temperature in Kuching and found it to be 37.6 degC.
The routine blood test must continue. And that was the first thing we do on arrival. Results were all out within an hour.
From the result, his must continue with this drug unless it is found to be of serious concern. He only complain of one joint pain on his right leg.
Doctor also told him that he must get up and walk and not lie down too much. I full agree with him. So this morning, he cycled to church!

Details of the blood test. Click to see the bigger image.

Ah Jon Lost 4KG

2009-06-06T13:00:00.006+08:00

6-June-2009 Day 71

One of the side effects of Glivec (Imatinib) is losing weight. So, up to now, he has lost 4KG!
Actually, he has been quite skinny all his life. But losing another 4KG is quite a lot.
He is now wearing long hair... just like me when I was his age! Like father like son!
On Wednesday (3 June 2009) after class, he complained of body ache all over, his right upper leg joint hurt a lot. I run out of idea what to do for his pain other than pray for him. After that, I fill up a bottle of hot water for him to "roll" on his leg and also apply analgestic & anti-inflammatory Ketotop plaster.
It was a relief to find him getting better.
On Thursday (4 June 2009), he didn't attend class as he insisted that there was only one tutorial class which he preferred to stay at home to rest!
On Friday (5 June 2009) morning, he was full of inspiration and energy and he went to class. In the evening, he looked forward for his steamboat dinner appointment with Yee. He was very disappointed as he missed the car to fetch him to the estate which is 50km from town. The waiting of the doc had been longer than expected.
So we decided to drive him to the estate. In the evening, he was very very happy and enjoyed himself. He stayed at the estate overnight.

Coping with CML

2009-06-04T12:05:00.005+08:00

During the last trip (16-May-2009) to Kuching, the doctor was amazed with the speed of recovery from the medicine and also the amount of side effect he got.
I would say that his blood condition is now almost normal. But the side effect of the drug is also causing other problems which need monitoring, especially his kidney and liver function. On the side effects he had so far were headache, joint ache, pain in the bone in his legs, nausea, low grade fever and the most serious of all is the cramp in his legs which caused him to be wheelchair bound for 2-3 weeks. Everyone was so shocked to see a heavy looking boy in one week and falling everywhere the next week. I sent message out to ask everyone to pray for him and I would testify that it is God's hand at work.
Regarding the muscle cramp, he found his own relieve - by using hot water bottle or cup filled with hot water. He just massage the affected areas with the hot surface.
Avoid cold and oily food is another thing. Otherwise, they will make the nausea worse.
Today, he is complaining about tiredness.
Chronology of events:

27-March-2009: He got into a serious car accident. He got out unscathed but hospitalised for a day for observation.
While in Miri City Medical Centre (MCMC), doctor found a slight temperature of 37.4 degC and he ordered a blood test.
28-March-2009: Found that his while blood cell count is 70 against the norm of 11.
Sample was sent to KL for further analysis and suspected that he has CML due to certain alleviated enzymes.
Blood test result came on 30 Mar 2009 with the report:
Hb is 10.9 g/dL, low for 18 year old. Red cells are macrocytic normochromic. Platelets are plentiful. Leucocytosis - increase in neutrophils and myelocytes, basophils. Impression: to confirm CML.
We quickly came back and check out on the internet all about CML. In two days, we knew about this disorder "more than anyone else"! Everyone was devastated but just as quickly, we regain our composure and prepared ourselves to fight this battle. Instead of retreating into a hole and blame God, we thanks and praise Him because we know that all these have been miracle one after another. Messages went out asking people to pray for him.
2nd April 2009: Our first trip to Normah and he went through a battery of tests. Confirmed that all his organs are in perfect order.
20 April 2009: We requested for a 2nd opinion at Sime Darby Medical Centre Subang Jaya. We talk to Dr. Ng Soo Chin who is one of the leading Haematologists in Malaysia.
The report came back: A normal male karyotype was observed in 53% of cells analysed. All other cells has the 9;22 translocation.
Recommedation for a permanent cure is Bone Marrow Transplant. I asked for divine healing!
HLA typing was also done for him. So many samples were taken off him to do the various tests.
He also started on Glivec.

The trip to Normah will be done every two weeks from now so that his condition can be monitored closely.

Details of the above events can be found on my other blog.

Blood test result

2009-06-03T21:58:00.002+08:00

Day 68
3rd June 2009

Ah Jon went to uni today. He came back in the afternoon complaining of pain all over the body. He said that it is like he has just gone through a marathon. After dinner, he has gone to sleep!

He went for his blood test last Friday, 29-May. We were spoil by the super fast service in NMC. They can get the result in one hour. In Miri, it is at least a day. Worse, not all the tests are done here. They must be sent to KL and will take additional day(s). Anyway, here is his latest reading:

Test date: 29-May-2009 Friday
Biochemistry
Sodium 139 mmol/L [135-145] Previous: 138>128>135
Potassium 4.1 mmol/L [3.5-5.1]
Chloride 104 mmol/L [95-110] Previous:100>90>100
Urea 4.8 mmol/L (2.5-8.0]
Creatinine 63 umol/L [50-116]
eGFR >60 mL/min/1.73m3
Uric acid 0.28 mmol/L [0.18-0.47]

Total protein 73 g/L [60-82]
Albumin 34 g/L [35-50]
Globulin 39 g/L [20-39]
Albumin/Globulin ratio 0.9 [1.0-2.5]
Alkaline Phosphatase 235 U/L [30-150]
Total Bilirubin 5umol/L [<21]
GGT 28 U/L [<51]
AST 11 U/L [<41]
ALT 19 U/L [<51]

Cardiac enzymes
CK 62 U/L [<301]
CK-MB 9 U/L [<23]

Haematology
Haemoglobin: 103 g/L [130-180] Previous: 10.7->10.5>9.9 g/dl [13-18]
RBC: 3.43 x10^12/L [4.5-6.5] Previous:3.6>3.5>3.2
PCV: 0.34 L/L [0.40-0.54] Previous: 0.34->0.32>0.30
MCV 98 fL [78-99]
MCH 30 pg [27-32]
MCHC 307 [300-360]
RDW 17.0% [11.0-15.0]

Total white cells: 6.3 x10^9/L [4.8-10.8] Previous:74.8->34.5>8.3
Differential counts:
Neutrophils: 81% 5.1 x10^9/L [34-64] Previous:60->89>80
Lymphocytes: 13% 0.8x10^9/L [20-45] Previous: 3>4>11
Monocytes: 3% [2-10] Previous:0->4>7
Eosinophils: 1% [1-6] Previous:1->0>1
Basophils: 2% [0-2] Previous:4>3>2

Platelet count: 272 x10^9/L [150-400] Previous:725->541>357

General Chemistry
High sensitive C-reactive protein (hsCRP) 27.2 mg/L

This high reading indicates a possible cardio-vascular disease risk factors.

Note: []bracket are normal acceptable reading. Previous reading on 18/4/2009, 2 May 2009, 16 May 2009 respectively

The following Liver function test is missing:
Lactate Dehydrogenase: ??? u/L [normal: 230-460] Previous: 1441->560>275
Creatine Kinase 61 [0-190] u/L (Is this the same as CK for cardiac Enzymes above?)

He drove to Uni Today

2009-05-29T23:20:00.002+08:00

Day 63
Date: 29 May 2009 Friday

Ah Jon seems to be well enough to drive to uni today. Ever since he suffered from the side effect, it seems that his moral was at his lowest in his whole life, probably because he suddenly found himself unable to walk well, had to use a wheel chair and cannot drive. I hope that being able to drive will boost his moral. Also, the mechanic has started working on his car. I hope that it will be done soon.
Tomorrow, he is supposed to go to Kuching again for review. But we requested that the blood test be done in Miri and has a review over the phone. Thanks God that the doctor agrees as it is impossible to get a plane ticket now as Gawai holiday is just 2 days away.
Yesterday, Ah Jon called me at 8:50AM informing me that he vomited and fortunately only water came out. I was not sure why was this the case. Probably it was due to the cool water he drunk.
Please do continue to pray for him. Ask God to reverse the translocated chromosome 9 and 22. Pray that they will be put back in the right order.

Soreness in thigh

2009-05-19T08:16:00.003+08:00

Day 53
Date: 19 May 2009 Tuesday

I think there is improvement in Ah Jon's condition. He has not been able to walk very well due to the pain and soreness in legs. But this morning, he complained of soreness only in his left thigh. We advise him not to take any pain killer as they may create more harm than good.
So he went to uni pushing his wheel chair along.
Please do continue to pray for his speedy recovery on his thigh; his studies; his motivation to do things that he enjoyed most - repairing computer for people at a fee and his appetite.

Ah Jon Is Improving

2009-05-17T01:24:00.003+08:00

Day 51
Date: 17 May 2009 Sunday

Ah Jon just came back from Kuching from his review. The test results showed that many results have gone back to normal. We have to thank everyone who has prayed for Jonathan. God is at work! Do continue to pray for him. Pray that the chromosome translocation of 9/22 be reversed back! Only God can do it!
An additional test for Creatine Kinase was carried out and found that the result is normal.

Test date: 16-May-2009 Saturday
Biochemistry
Liver function:
Lactate Dehydrogenase: 275 u/L [normal: 230-460] Previous: 1441->560!
SGPT (ALT) 4 [normal:5-41] u/L
Creatine Kinase 61 [0-190] u/L
The rest of the liver function test are normal.

Renal Function:
Sodium: 135 mmol/L [normal: 135-150] Previous: 138->128
Chloride: 100 mmol/L [normal: 97-110] Previous:100->90
The rest are normal.

Haematology
Haemoglobin: 9.9 g/dl [13-18] (10.7->10.5)
Total Red Cells: 3.2 x10^12/L [4.5-6.5] (3.6->3.5)
PCV: 0.30 L/L [0.40-0.54] (0.34->0.32)
Total white cells: 8.3 x10^9/L [4.8-10.8] (74.8->34.5)

Differential counts:
Neutrophils: 80% [34-64] (60->89)
Lymphocytes: 11% [20-45] (3->4)
Monocytes: 7% [2-10] (0->4)
Eosinophils: 0% [1-6] (1->0)
Basophils: 2% [0-2] (4->3)
Platelet count: 357 x10^9/L [150-400] (725->541)

Note: []bracket are normal acceptable reading. () bracket were previous reading on 18/4/2009, 2 May 2009 respectively

Ah Jon is coping well but still sore!

2009-05-13T22:05:00.004+08:00

Day 47
Date: 13 May 2009 Wednesday

Ah Jon didn't go to study on Monday as there was only one class. He wanted to let his leg rest for a day. Yesterday, he went and brought along his wheelchair... just in case he needed it. Ok, he told me that he used it for a while.

Today, he went to study without the wheelchair and came back ok. He didn't complain. We went out for dinner with Ivy and Emily. At the end of the dinner, his left thigh began to "tweak" and complain of "soreness". He lay down on the chair and the pain brought tear to his eyes. So I prayed for him and a little while later, he sat on the chair telling me that he was ok already. Thanks God for that!

We quickly finish off the last bit of food and headed for home. He seems to be ok now. He doesn't want to take pain killer which I think is a wise move. I think he is sleeping now... do continue to pray for him. Thanks.

I got the approval from the company for this Saturday trip to Kuching. Initial plan is to go on Monday but he has a skit to play on Monday. So mummy will go with him this Saturday. I have a a photography session this Saturday.

2009-05-10T21:48:00.003+08:00

Day 44
Date: 10-May-2009 Sunday

We went to our Church Camp at Borneo Rainforest Resort. It was a good time for learning.
Jonathan was there also. His pain in his left leg continues and seems that he is now suffering more from the soreness rather than anything else. Today, he complains of pain the the bone of his lower left leg. So he took two Panadene to overcome the problem. I prayed for him as well.
On returning home at about 3:00PM, he has been busy posting comments on his forum.

Skip Class Again

2009-05-07T23:36:00.004+08:00

Day 41 since discovery
Date: 7-May-2009 Thursday
Jonathan decided to stay back again today as he said that his legs are beginning to recover from the cramp. Since there are only two classes, we decided to let him stay at home and do his work.
We noticed a great improvement on his leg during lunch time.
In the evening, he complained of sharp pain in the bone of his lower right leg. So he took two pain killer to relieve it. By 11:00PM, he said that the pain is moderate.
Tonight, I decided to bake a loaf of bread for their breakfast tomorrow. Hope that the children have a change in the regular breakfast and enjoy it.

Pray this prayer for him (by Teresa Han):
Dear Heavenly Father, You are a great and mighty healer, Jehovah Repheka.

We thank God that provision for healing has been made more than 2000 years ago and we can receive it now and get healed in Jesus' name.(Isaiah 53:5)
Pray for God divine intervention on the whole medication process and wisdom from above for the doctors in charged that they will give the right medicine that can heal Jonathan. We cast away all the side effects from Jonathan in the name of Jesus. We render them powerless and have no effect on Jonathan's physical body system.

Father, look upon Jonathan. Let each drop of blood Jesus shed for him flow inside him and strengthen his body and remove all his pain and heal him completely. We confess that Jonathan is healed by Jesus' blood. Bind his physical body to the Spirit of God that has quickened his mortal body (Rom 8:11), bind Jonathan to the finished work of Calvary that forgave ALL of his iniquities and healed ALL of his diseases(Ps 102:3-4; Ps 107:20), Bind Jonathan to the stripes of Christ by which he is healed.(Isa 53:4,5;1 Peter 2:24) Then loose Jonathan from the manifestations of INFIRMITY of his blood system, blood disorders(Matthew 9:20:22) and the side effect of his body system in Jesus' name.

Pray that God will reveal the right sibling to be the marrow donor. The Lord will make Jonathan the head and not the tail; Jonathan shall be above only, and not be beneath, if he heed the commandments of the Lord his God, which He command Jonathan today, and are careful to observe them. (Deuteronomy 28:13). We claim the word of God is living and powerful for Jonathan that his studies will not be affected and he will excel well. We pray that the Holy Spirit will dwell in his heart to be his comforter and healer.

Cleanse Jonathan whole body system with blood of Jesus Christ and strengthen his body and heal him completely. He is healed by His stripes. We join our faith together and speak life and victory over Jonathan's sickness and let there be a testimony. So shall it be.

Shield and cover the whole family with blood of Jesus Christ. We give all glory and honour to our mighty God.

Pray this in Jesus name and give thanks. Amen.

Skip classes today

2009-05-06T19:47:00.003+08:00

Day 40 since discovery
Date: 6-May-2009 Wednesday

Jon skipped classes today as he think that his legs hurt too much. So he stayed at home.
This evening, he said that there is improvement in the legs.
His cramp has more or less stopped but the soreness is still there.
His appetite has also improved a little.

Coping with Wheelchair

2009-05-05T23:50:00.005+08:00

Day 39 since discovery
Date: 5-May-2009 Tuesday

Today, Ah Jon went to uni on a wheelchair. There is much to be adapted to the "new environment". For example, when he is able to walk on the two feet, he can carry a couple of bags, one on each hand, another sling over the shoulder, etc. But this morning, he packed as normal... one back pack, a food/water bag and a thick sweater.
When we reached the uni, we realised that he needed to put all these stuff on his lap with two hands supporting them. So, how is he going to move the wheelchair? Fortunately, I have a large back pack so that he can put everything inside.
I wheel him to his classroom with all the eyes focusing on him. I felt a little uneasy but I just pretended that he was the only one in the class. I noticed that his lecturer came and asked what has happened to him.
By about 11:15AM, he SMSed me telling me that he needed to talked to me. I didn't get the message until much later. He later told me that he needed to lie down as he could no longer stand it. But by noon, he had decided to take the pain killer and he was ok after that.
I picked him up at 3:00PM and sent him home.
My main concern now is his appetite and the pain. There is no more cramp but he has to recover from the effect of cramp.
This evening, he spent most of his time sleeping until we came back from a dinner. He said that he couldn't sleep from 2-4AM last night.
This is how the "tube dressing" looks like. Can someone please tell me the proper name.
This is what glivec/imatinib looks like. It costs more than gold.

Pray for him:
I ask in the name of Jesus, all pain in his legs be taken away, strength be restored, muscles and tendons be in perfect order and function. Amen.

Back to Class

2009-05-04T22:33:00.000+08:00

Day 38 since discovery
Date: 4-May-2009 Monday

Today, he went back to the university at 11:00AM. I thought that this is a good opportunity to test out his endurance as the day was short.

However, at noon, he called me and told me that he couldn't stand it anymore and the pain was too much to bear due to the walking. He needed a wheelchair to move around.

Church friend told me yesterday that we could borrow wheelchair. So I called up the organisation but was told that they normally serve those registered people who need wheelchair. Since I only need it temporarily, she asked me to try the Red Crescent (Red Cross).

At 2:30PM, we decided to go to the university and spoken to the head of department to find out how do we deal with such a case as he may be on-and-off and may break for sometime toward the end of the year for transplant. So, he will discuss and call back.

At 3:50PM we reached the Red Crescent and met Miss Ling (I knew her for a longtime already as I am a regular blood donor). She gave me a form to fill in, sign and we got our wheelchair on loan!

So, Ah Jon should be on wheelchair tomorrow and should be able to last for more hours. Anyway, we shall see.

Tonight, he took some calcium D supplement and pain killer - I think it is called Panadine. This morning he took one oral dehydrating salt.

He appetite was quite good tonight. I cooked green bean with rock sugar for him. I also boiled an egg, some chicken, veg and rice.

Post note: We insisted that he drank lots of water, ie, >2L a day to flush out the protein from the dead white blood cell. Failing to drink lots of water can cause his kidney to be overloaded and thus kidey failure.

Leg cramp

2009-05-04T22:15:00.000+08:00

Day 37 since discovery
Date: 3-May-2009 Sunday

We went to church this morning and the whole church prayed for him. Later, brother Paul Wong and a group of others also prayed for him. I briefed bro Paul on 1-May-2009 about Ah Jon's condition.

His left calf was in great pain. We didn't dare to give him powerful pain killer. Other than constant cramp in his left leg, there is no other side effect now.

It just occurred to us that perhaps we should let him wear an elastic "tube dressing" on his leg. It so happened that I got one piece from the clinic long ago when I complained of knee pain. After he put on the dressing, he felt that the pain was more relieved and he didn't feel that blood was now rushing down his left leg whenever he stood up.

By evening, he felt more pain on his right thigh. We think that we better bring him to the local clinic to get another piece of elastic tube dressing, pain killer and oral dehydrating preparation (to increase his sodium & chloride). We arrived at the clinic at 8:30PM. There was a trauma case - someone got beaten and the head was injured. We waited until 10:30PM before giving up and proceed to MCMC and was attended to by Dr Lau at 11:20PM. His temperature was 37.9 and BP 120/70.

We got what we wanted but the tube dressing was of poorer quality. Anyway, it is better than nothing. By the time we went to bed, it was 1:00AM.

Ah Jon 3rd Visit to Specialist

2009-05-03T15:35:00.000+08:00

Day 36 since discovery
Date: 2-May-2009 Saturday
This morning, I accompanied Ah Jon to Kuching using the 8:40AM flight. His muscles on his left calf is causing him much problem. He is experiencing frequent cramp of the muscle on his lower left leg. He has problem walking unaided and hence, I requested for a wheelchair at the airport.
I have to thanks MAS for the wheelchair. Actually, only in situation like this, you realise the kind of fantastic services that MAS is providing. The attendant helped to push Ah Jon everywhere... loo, into the plane, etc.
While purchasing taxi ticket, a certain Mr. Richard was also going to Normah. So I offered him a seat in the taxi!
On arrival at Normah, Richard helped us to alert the nurse for a wheelchair. We went to the normal 2nd level to look for our specialist, Dr. Lau. Today, his door was locked and we just realised that his nurse, Susana, just gave birth to a baby girl 2 days earlier. Congratulation, Susana! So, a nurse brough us to the oncology department on the forth floor.
10:40AM: When entering the waiting room, Ah Jon suddenly felt very cold and he was shivering. Some of the patients there immediately came to our aid and showed us an adjacent room where we can control the room temperature. I went opposite and saw Dr. Lau and informed him that Ah Jon is feeling very cold. Immediately he came over and offered Ah Jon a bed and blanket to wrap himself. He also got the nurse to take his blood sample, BP (120/65), temperature (37.6) and an ECG test (I think it was normal). Thanks for all their fast action! I really appreciated it.
The blood result was released in an hour.

Liver function:
Lactate Dehydrogenase: 560 u/L [normal: 230-460] Previous: 1441!
The rest of the liver function test are normal.

Renal Function:
Sodium: 128 mmol/L [normal: 135-150] Previous: 138
Chloride: 90 mmol/L [normal: 97-110] Previous:100
The rest are normal. The above two gave rise to muscle cramps. So, he needs to take more sodium chloride, ie, common salt!

Haemoglobin: 10.5 g/dl [13-18] (10.7)
Total Red Cells: 3.5 x10^12/L [4.5-6.5] (3.6)
PCV: 0.32 L/L [0.40-0.54] (0.34)
Total white cells: 34.5 x10^9/L [4.8-10.8] (74.8)

Differential counts:
Neutrophils: 89% [34-64] (60)
Lymphocytes: 4% [20-45] (3)
Monocytes: 4% [2-10] (0)
Eosinophils: 0% [1-6] (1)
Basophils: 3% [0-2] (4)
Platelet count: 541 x10^9/L [150-400] (725)

Note: []bracket are normal acceptable reading
() bracket were previous reading on 18/4/2009

From the above result, there is a substantial improvement after 10 days of Glivec treatment.