Sunday, June 28, 2009

Blood test

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.

Tuesday, June 23, 2009

He Went for semester exam

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.

Wednesday, June 17, 2009

High spirit today!

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.

Tuesday, June 16, 2009

Pain all over

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!

Sunday, June 14, 2009

Review in Kuching

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.

Saturday, June 6, 2009

Ah Jon Lost 4KG

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.

Thursday, June 4, 2009

Coping with CML

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.

Wednesday, June 3, 2009

Blood test result

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
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]

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?)