Friday, May 29, 2009

He drove to Uni Today

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.

Tuesday, May 19, 2009

Soreness in thigh

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.

Sunday, May 17, 2009

Ah Jon Is Improving

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
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.

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

Wednesday, May 13, 2009

Ah Jon is coping well but still sore!

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.

Sunday, May 10, 2009

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.

Thursday, May 7, 2009

Skip Class Again

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.

Wednesday, May 6, 2009

Skip classes today

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.

Tuesday, May 5, 2009

Coping with Wheelchair

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.

Monday, May 4, 2009

Back to Class

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

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.

Sunday, May 3, 2009

Ah Jon 3rd Visit to Specialist

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.