Tuesday 25 June 2013

BMT Schedule

Dear family and friends,

We attended a counselling session at Ampang Hospital today, to prepare everyone for Min Ser's bone marrow transplant. 
Was a very informative session with a lot of details, will try to summarize below:

12 July
- Admit to Ampang Hospital Transplant Ward (Ward 7D)
- This is a special ward in a highly controlled environment; even care-givers cannot use the same toilet as the patient, and cannot eat in the same room
- Anyone entering the ward has to go through 2 checkpoints, must wear a mask and apron, and change their shoes
- Strictly no visitors allowed; only one immediate family member at a time
- Food brought in from outside the ward needs to be checked by the nurses
- Because of the severity of the transplant regime, there will be one nurse dedicated to 3 patients max (this is even better than most private hospitals)

15 July
- Consultation and preparation for radiation therapy at KL General Hospital
- Interestingly, Min Ser won't be able to use soap or any lotion for 2 weeks (to avoid any skin reaction due to the radiation exposure)

18 July
- Insertion of Hickman Line in Min Ser
- Will be used for the next 3 months; inserted near his neck and used for all IV purposes

23 to 25 July
- Commencement of radiation therapy
- Will be a full body irradiation, so expected to have quite strong side effects

26 to 27 July
- Commencement of high dose chemotherapy
- This will be the last and strongest dosage (to date) that will permanently destroy his stem cells, just prior to the transplant
- Praying that Min Ser won't have too severe side effects...most patients do

25 to 28 July
- Preparation of donor (Sue Min) for stem cell harvesting
- She will be taking GCSF shots daily to increase the body's production of stem cells

29 July
- Bone marrow stem cell infusion
- This is the actual 'transplant' of Sue Min's stem cells into Min Ser
- 3 million of Sue Min's cells will be harvested in the morning, and if all goes well, will be transplanted in the afternoon to Min Ser
- Successful grafting of the donated stem cells will be the only way for his marrow to start producing blood again
- The following 2 weeks will be the most high-risk period
- Main focus will be to combat infection and to prevent rejection of the donated cells (GVHD: Graft Versus Host Disease)

Mid August
- Expected date of discharge from hospital (if no complications)
- Strict quarantine at home for next 3 months (still high risk of infection and GVHD)
- No exposure to direct sunlight (apparently UV rays can trigger GVHD)
- No exposure to crowds (visitors discouraged)
- Visit hospital twice a week for tests and monitoring

Mid November
- Critical period over; visit to hospital once a week for next 3 months
- Recuperation of cells expected, and immune system starts strengthening
- Visitors allowed at home, but monitored

Mid February
- Hopefully back to 'normal'; visit to hospital once a month
- Low risk of infection and GVHD at this stage

Friday 14 June 2013

End of Third Cycle Chemo

We are finally able to leave the hospital today. Min Ser's blood counts are recovering and he was discharged today. So yeah, we've successfully gotten through the 3rd Cycle of chemo!

What this means is that we will have a few weeks break before going back mid July for the next crucial stage that is THE Bone Marrow Transplant. In preparation, he has had his lung function test and dental check up. We will be going into Ampang Puteri for a scheduled echo test on Tuesday and then a counseling session (25/6) regarding transplant week after next.

We will find out more regarding the transplant from the counseling session, but from what I understand there will be a few days of conditioning which involves high doses of chemo that will severely wipe out/weaken his stem cells allowing engraftment of new healthy stem cells (from Sue Min). According to one of our doctors this procedure will take an average of 3 months where he will be strictly observed and given immunal suppressants and anti rejection drugs.

Even now our prayer is that the grafting of new cells will be smooth and successful without severe reactions. After the 3 months he will be able to slowly recover and get back to his daily activities, though the one year period after the transplant is also a very important time frame, as this will be the real test as to the true success of engraftment.

So do pray for us (prayer request updated here) as we continue to take this journey one step at a time, each day as it comes. To date, I am just truly thankful that we have gotten to this stage by God's grace and with the strong support of friends and family. It is encouraging whenever we get random messages reminding us that we are remembered and that you all are praying for us.

Saturday 8 June 2013

Third Cycle Day 16

Chemo day cycles are based on the 1st day of chemo. Thus it's day 16 since chemo started. First 5 days of chemo, day 9-10 the counts will start dropping, day 13-14 counts will be at the lowest, and by day 15-16 the counts should start going back up, platelets usually the last. By day 21-23 most people would be able to go home. Though with a higher dose regime, there will be more days with low blood count.

We have yet to see his counts since two days ago, when his counts were all low. White blood cells counts were at 0.0. He has been having fever of varying temperatures in the past three days with no signs of infection. Medication consists of the usual paracetamol, antibiotics, anti fungal and shots of GCSF.

Physically he is tired but mobile and able to eat pretty well. Doc says it's likely it'll take another week till the counts are considerably normal.

Tuesday 4 June 2013

Low Blood Counts

Just a quick update. Min Ser has been back in hospital since Sunday. Blood counts are low. He has had two blood transfusions and one platelet transfusion. He has a slight bump under his skin, probably nothing serious but a biopsy was taken this afternoon. Besides that he is alert, eating well, and sleeping well.

Counts as today (before platelet transfusion)
Hemoglobin: 8.9
White blood cells: 0.1
Platelet: 16