Monday, March 23, 2015

Another milestone

Her CVL has been removed a moment ago. Alhamdulillah. Another milestone out of many more to come.

Relieved and nervous - a mixed feeling for I have known the convenience that it had afford my daughter. It kept her comfortable throughout her treatment that involved daily bloodtaking, transfusion and multiple doses of drugs infused into her.

The creation of CVL is truly a mercy from God, especially for small babies like her.

For the removal, doctor had to set the branular to give her sedation. We hope and pray that will be the last that she'll ever need for the rest of her life. Insya Allah.

Ps: Today is day +81.

Friday, March 6, 2015

Being SAHM

It's Friday.

Being at home, you look forward to evening when your hubby comes home and you can be family again.

I guess that's how my kids feel as well when I came home from work.

My leave is ending soon and I have mixed feelings about it. I do enjoy taking care of my kids at home and layan their antics. But I feel that if I continue being SAHM, I will lose myself. My life will only be about the children. I hardly even have time to blog.

It won't be easy to go back to work again. I need to reflect back what I truly want in life.

Wednesday, March 4, 2015

Day +60

60 days post transplant.

22 days since we finally left the hospital.

But the journey is far from over.

She is still on 3 meds - CSA, UDC and Acciclovir. She has weekly checkup with the doctor for bloodworks and CVL dressing.

She is strictly on the following diet: no raw food, no plants, no pets and no visitors.

Other than that, she looks healthy, alhamdulillah.

Sunday, February 1, 2015

Day +31

Its day +31 of the transplant today. This means that she is now in the 3rd stage of the bone marrow transplant which is the post engraftment period. This stage is until day +100.

In this 3rd stage,  it is about protecting from infection and praying that there won't be any signs of GVHD. And of couse that the marrow will continue to engraft well.

So far, the engraftment has been progressing well alhamdulillah, albeit some yoyo  effect. But doctor seems fine with it, and told us to be patient while it stabilized. Hana had 4 days of no platlet transfusion, until yesterday when it dropped to 9 again. Well, at least it didn't dropped as drastically as when  she was on daily transfusion. Am still hoping that yesterday will be the last transfusion that she'll ever need.

Doctor is targeting to discharge her on Wednesday, 2 days away and 2 days before her 1st birthday. However, I think that we would like to have her platlet stabilized first before we really go home.

Time moves faster now, unlike the first 2 weeks of the transplant when time seems to just crawl.

Alhamdulillah that we can already talk about going back.

Does this ever happen to anyone else?

I make it a point to read a few verses of Quran daily, and many times, the verses answered/discussed the same topic that was playing in my head.

It happen to me a few times but didn't think much of it. But today, just stunned me.

Last night and early this morning, I had replied to a post by my friend, who is a Christian and we end up discussing a bit on the Bible and the Quran.

Just now, I was reading surah Al-'Ankabut and I got to these 2 verses:

Quran 29:46 - And do not argue with the People of the Scripture except in the best manner possible, except those who do wrong among them. And say, "We believe in what was revealed to us, and in what was revealed to you; and our God and your God is One; and to Him we are submissive."

Quran 29:47 - Likewise, We revealed to you the Scripture. Those to whom We gave the Scripture believe in it, and some of these believe in it. None renounce Our communications except the disbelievers.


Thursday, January 22, 2015

It's day +20 today.

Day 0 to day +15 has to be the longest 2 weeks of my life. Never have I felt time moved so slowly as that two weeks.

The first week, she was suspected to have mucositis. We couldn't detect any blisters but she suddenly stopped breastfeeding. Only a mother would understand how heartbreaking and worried I was then. Doctor immediately prescribed her Morphine to ensure she is not in pain.

In week 2, on day +10, finally came the good news that the marrow had start engrafting. But our relief and joy was overtaken by news of a serious side effect from the Chemo drug, the veno occlusive disease (VOD). VOD in layman term is the dysfunction of the liver that caused the liver to enlarged and body unable to excrete fluids. Her liver had enlarged from 4cm to 8cm and gained 1kg of weight due to the accumulation of fluids. She was all puffy, the poor dear and had to begiven some drugs to help her pee out the water from her body.

Doctor had to start her on Defibriotide - the expensive drug meant for VOD. Alhamdulillah, with Allah's will, we finally saw the effect from the drug a week later. At day +20, the liver is now at 5cm. Hoping it will shrink further tomorrow.

At times it felt like a scene from House where one symptom after another starts appearing. The comforting thing is that the symptoms are somewhat expected by the doctor hence they are prepared with the necessary interventions, alhamdulillah.

Tomorrow is another milestone for Hana. Tomorrow, the doctor plans to convert all her meds to oral instead of through IV. With that, she will be free to walk around (be carried around the room that is) and no longer be tied to the machine. This is an important step before doctor can finally discharge her from the hospital.

Therein begins a new challenge for us.

Sunday, January 4, 2015

Today is Day +2.

Means 2 days has passed since the day of the transplant.

Alhamdulillah. Alhamdulillah, Alhamdulillah...

The transplant operation went smoothly. My son turns out to be such a brave and strong boy, Masya Allah. Mommy is sooo proud of him. We told him that he needs to go through this to help "adik", and he seems to understand it. I hope that he will redha with the gift that he have to his little sister. And I hope that they will continue to be close and always look out for one another.

Hana is holding out well, alhamdulillah. She had 2 expected symptoms - diarrhea and sore throat. Doctor not so worried and is keeping her under close observation.

The more worrying thing, for me at least is her CVL, which had new blood today :(

Her white cell has gone down to 0.3 so this is a very critical stage for her to not get any infection.

Am praying that she goes through these coming weeks without any infection nor side effect/GVHD.