Chemo Day Care – 28th August 2009

This update is long overdue. We had a small technical problem with the blog but that's been rectified by Godpa.

I(Pam) was blessed with a short holiday from 24th – 27th August. Jacob had a meeting in Singapore and I decided to tag along. It was a short break that we both so needed. Grandma and Grandpa looked after the brood while we were away.

During the holiday, I had a lot of time to myself and every day I prayed that Aidan would not have to go through another blood transfusion on 28th August. (The day after we returned from our holiday). It is such an ordeal for us all to sit through a 4 hour transfusion and also not knowing if he will react badly to it.

On the 28th August, as per the routine, we got to Chemo Day Care early in the morning. The nurses drew blood from Aidan (They now have to draw blood from his vein since the Chemo Port has been removed) and sent it for testing.

The results came back and I couldn't believe my eyes. His haemoglobin reading was 13.3. The highest reading to date!!! I knew right then that God had answered my prayers. The nurses on the other hand were uncertain of the reading, so they sent another sample to the main lab for a second reading. The results were the same.

When the doctor came, he said that the earlier result on 22nd August could have been a mistake as medically one's body cannot generate red blood cells that fast.

I however know that I have a God whose ways defy science and logic. God had indeed answered my prayers. What a great and amazing God we have.

Aidan will now have to go for monthly check ups. His next check up is on 23rd September.

Jacob and I continue to trust God and know that Aidan is destined for great things. I welcome you to continue with us on this journey of seeing God's Master Plan at work in my fiery little one who stays true to his name. Aidan means Little Fire.

Check Up - 22nd August 2009

Yesterday was supposed to be Aidan’s routine check up. We were requested to go to the Doctor’s Clinic this time.

Since it was a Saturday, Jacob and I(Pam) decided to take Aidan for his check up instead of the normal routine of Kakak Esther (our maid) and I.

We had to get his blood tested at the lab before seeing the doctor. Since there is no more Chemo Port to draw blood from, they had to prick Aidan’s finger instead. Not much of a drama there except that Aidan didn’t like being held down against his will and made his feelings known to all concerned.

The results came an hour later and alas, his haemoglobin was low. The minimum reading as per the doctor, is 10 and Aidan’s reading was 7.7.

The doctor says this could be due to the infection he had earlier.

Therefore we will have to go back next Friday, 28th August, for a blood transfusion. (Unless his reading goes up in the next couple of days... which is not impossible……)

Will keep you updated after the next check up this coming Friday.

Chemo Day Care - 6th August 2009

After the last hospitalisation, Aidan has not developed any fever. However, he did develop chills every time we flushed his chemo port, which I thought was kind of strange.

When we went for his check-up on 6th August, we mentioned it to the nurses. As per the routine, the nurses drew his blood and sent it for testing. When the results came, it showed that Aidan had developed an infection at the Chemo Port inlet.

The doctor explained that the infection was causing the chills. Since Aidan was due for a Lumbar Puncture and Bone Marrow and would be under sedation, the doctor suggested that we remove the chemo port too. I was more than happy to agree. What a relief it would be, not having to worry about whether Aidan would pull it out or whether it would come off when he tossed and turned while sleeping. Not to mention having to clean and flush the port all the time. I sometimes think the Chemo Port caused us more trauma compared to the hospitalisation.

The procedures were done. I prayed that Aidan would not react badly to any of the procedures and thankfully he did not.

We went home happy that it was ALL OVER.

We could not be more thankful for this journey. It has made us value life and redefine what's important and what's not. It has above all been a journey of FAITH. Trusting God for every single thing, from the big things such as finances, to the small things such as someone to prepare meals for Aidan when we couldn't.

We could never thank all those who have been on this journey with us enough. Many prayer warriors have supported us in prayer, some we know personally while others we don't and yet you were kind enough to pray for my little fire, Aidan. We would never have made it through without each of the angels God sent our way. May my God who is the Alpha and the Omega, the beginning and the end, bless each of you abundantly……..

Aidan's next check up will be on 22nd August, this coming Saturday. Updates of the check up will follow soon after.

Chemo Day Care - 20th July 2009

Today is 27th July 2009. Seven days after Aidan's check-up. Why the delay in updates one may wonder? Well... Continue to read and you will find out the reason.

On 20th July 2009, we took Aidan in for his first check-up after his final round of Chemo. As per the normal routine, blood was drawn and the readings were as expected. All the counts were low. It takes 10 - 14 days after the Chemo for all the counts to pick up.

The doctor ordered a blood transfusion as Aidan's haemaglobin count was only 8.4 when the minimum should be 10. Aidan slept through most of the transfusion and when it was completed, we got in the car and headed home.
It was when we reached home that the drama began. Aidan started having chills just as we got into the house. He was trembling from head to toe and started burning up with fever. Trust me, when I say "burning up, I mean burning up". He was so hot that I started to panic. I thank God for the ability to think although I was panicking. I gave him fever medicine and started sponging him. It was over an hour before we managed to bring the fever under control.

I called the hospital and they told us to bring him back for admission immediately. These days the word "Admission" is a bad word for mummy. Upon hearing that word mummy went off on a tangent. I could not bring myself to think of another long stay at the hospital. I just sat and sobbed and sobbed for a good half hour. Jacob was home from work by then and knew that I was cracking due to stress and fatigue. He got everything organised, made sure I had something to eat and drove us back to the hospital.

I had managed to catch a quick nap during the drive to the hospital and pulled myself together by the time we arrived. We took him to the emergency room and they dripped him straight away. Audrey, my sister, was waiting for us at the hospital. She had come prepared to stay the night with Aidan just in case I was still off on a tangent.

We were then ushered back to the ever so familiar Paediatric Ward. It was almost midnight when we all settled in. Finally it was Jacob, Kakak and I who stayed the night.

The next day, Aidan's doctor came in. He told us that he had read about such cases but had never seen it till now. Aidan had reacted to the transfusion much later. In almost all cases, the children react during the transfusion. Trust my son to be the non conformist.
The doctor advised us to stay for another night just in case Aidan developed a fever again. After the fever at home, he had only once developed a slight fever at the early hours of the next day. After that the fever seemed to settle.

Thank God it was only a three day stay at the hospital and not longer. I found God given strength to make it through the stay. However it seems to be taking me longer to get back to my normal routine and sleeping time. I have been too tired to do anything for the past week and only now am getting back on my feet.

Pictures during the final week of Chemotherapy (session 3)

Nurse Eleanor setting up the drip line to run the Chemo drugs. Eleanor has been so good with Aidan.

Nurse Eleanor connecting the Chemo line to Aidan's Chemo Port.

Staff Nurse Samantha carrying Aidan. She is Aidan's favourite nurse. How ironic... Jacob and I have known her since she was a little girl. We used to attend the same church.

Jessprit (our angel at the hospital), playing with Aidan. She has gone over and above the call of duty to ensure we were comfortable at the hospital. What a blessing she has been.

Chemotherapy - Session 3

It was the afternoon of Saturday, 4th July that Aidan suddenly developed a fever. He had been doing so well after round two of his Chemotherapy and now, just two days before Round 3, the final round, that he suddenly develops a fever. Since the fever was mild Jacob and I decided to observe him first before deciding whether to take him in to the hospital.

Throughout Saturday evening, the fever was very mild. On Sunday, it was initially mild but started becoming high late Sunday night. We did not sleep through the night. We sponged him, gave him fever medicine and prayed that it was nothing serious. After being fretful through most of the night, Aidan settled down and slept toward the early hours of the morning.

It was when Aidan woke up at 6.30am on Monday morning that Jacob and I almost had a heart attack. Aidan's face, especially his tongue and lower lip were swollen so badly. We rushed him to emergency where they immediately put him on drips and started a course of antibiotics.

Aidan's doctor came in later, when we were settled into our room and told us that the swelling was due to infection and therefore what was supposed to be a three day stay at the hospital would now be a six day stay instead. They would have to treat the infection first and only after that start the chemo.

We settled in knowing it was going to be a looooonnnngggg week.

On Wednesday the doctor came in with the good news that the infection had settled and that they could start administering the chemo. However as always, before the chemo is administered, a lumbar puncture had to be done. This was going to be Aidan's fourth Lumbar Puncture.

However, this time Aidan woke up after the procedure and started screaming endlessly for a good two hours. The nurses and I tried in vain to calm him but he just would not settle. They then called the doctor who prescribed a pain killer. All through his screaming I cuddled him close and prayed. It was the only thing I could do. Only about and hour after the pain killer was administered did Aidan settle down and sleep.

I was tired, upset and a jumble of emotions. My God is a good God. He caters to all our needs. It was just then that Audrey, my sister, walked in with her friend, Hock Yun. He told me that he felt that he needed to come to the hospital and so he came over. I don't know him personally except for a fleeting introduction when I had visited Audrey's church sometime ago. Hock Yun is one of many who has been praying for Aidan. He had actually arrived at the hospital earlier and had popped into the room when Aidan was screaming. He saw the situation and said he would come back later. When he did come back, he shared some of his thoughts with me, and then he and my sister prayed for Aidan. I could never put into words the peace that settled after that.

The Chemo ran for three days and the last dose was administered on Friday night. On Saturday, we were all ready to go home. The doctor came in early and signed the discharge form. How wonderful it was to be able to get in the car and head home.

Due to the strain of the hospital stay this time round, Papa and Mummy have taken a while to recover. Jacob came down with a flu and I have not quite gotten back to sleeping well. Thus the delay in the updates.

Aidan's next checkup is on 20th July and the updates of that check-up will be posted soon after.

Chemo Day Care - 25th June 2009

Aidan went in for his check up today. I(Pam) held my breath waiting for the blood test results. 10 minutes seemed to take longer than usual. Finally the nurse came to our bed with the results. All was ok except for his haemoglobin. The doctor had already cautioned us during discharge that Aidan might require a blood transfusion. As the doctor had predicted, Aidan’s haemoglobin was low and he required blood transfusion.

I exhaled, then got comfortable knowing that it was going to be a long day as the blood transfusion takes 4 hours. I lay in bed with Aidan as they hooked up the drips. We had come in at 9.15am and left the hospital only at 3.40pm. What a long day it had been.

We got home an hour later tired but thankful that all had gone well. (We were warned that some children react badly to blood transfusion, with symptoms such as chills or fever).

God has indeed answered our prayers, Aidan has not developed a fever since his discharge and continues to eat well and is now getting better at balancing while he learns to walk. He has also recently started saying “Pa Pa Pa – for his Dad” and “Ma Ma Ma – for me, his Mum” and not forgetting his favourite word “Mum Mum – for food”. He loves his food.

Come Monday, 29th June 2009, it will be exactly two months since Aidan was diagnosed with Leukaemia. How time has flown! Now we can see a glimpse of the light at the end of the tunnel. Come 6th July, Aidan will undergo the last round of Chemo. What joy just to pen down the word “Last”.

Chemotherapy - Session 2

15th June 2009 was the start of Chemotherapy – Session 2. It was back to the hospital again for a couple of days. Upon admission, Aidan’s doctor came in and told us that he would want to do a lumbar puncture first and before starting the Chemo.
This time the Chemo would run only twice a day for three days. However it would run for three hours each time. Aidan would also have to be on drips for the whole stay.

Can you imagine what a difficult time we had? Aidan had to fast for four hours before the lumbar puncture was done. Poor baby!! No food, no water, nothing. The lumbar puncture was done at 4.45pm and the Chemo finally started at 6pm. Since the first dose of Chemo was only administered at 6pm on Monday, it would mean that the last dose would only be administered on Thursday at 6am. Once again as the Chemo was administered, I prayed that it would not have adverse effects on my little Aidan.

Tuesday, 16th June was a day of great tidings!! The doctor informed us that the Lumbar Puncture showed that Aidan’s Leukemia was in remission and that he would only need one more round of Chemo in July. Praise God!! It was indeed a great joy to hear this good news. We once again were blessed with a visit by the members of Full Gospel Tabernacle (FGT), Kuala Lumpur. Michael and family once again came to pray for us. Jessy and Alex our dear friends also came to visit and so did Godma.

Wednesday, 17th June was a quiet day. Papa came in after work as usual. Papa and Kakak left for Seremban around 9pm and Aidan and Mummy settled in for the night. It was then that the drama began. The Chemo tube had come off and there was blood all over the place. Mummy almost had a heart attack. The nurses came in and fixed it and helped to get us both cleaned up. Thank God I discovered it quickly. Trust my feisty little fellow to do something like this.

Thursday, 18th June had finally arrived. Yahoo!! Time to go home. Aidan’s last round of Chemo ran till 9am. A blood test was done before we were discharged. His haemoglobin was a little low but the doctor said it was Ok for us to go home. Thank you God for seeing us through another round of Chemotherapy.

Chemo Day Care - 11th June 2009

Today we went for Aidan’s check up as a family (minus Jacob). Since it was still during the school term break, we decided to take Allison and Abraham too. It would be good for them to know the process. Sandwiches were packed and off we went to the hospital.
As usual, the nurses came, they drew his blood. Tested it. All in order. Praise God!! We could go home. So the Jacob family got into the car and home we went.

Chemo Day Care - 8th June 2009

Jacob was on leave and came with us for the check up. As usual blood was drawn. I could not wait for the results. I needed to know if the diet regiment had paid off. Hallelujah!! The results were out and Aidan’s haemoglobin count had gone up. No transfusion needed. We could go home. This day must be referred to as the “No drama” day :-)

Chemo Day Care - 4th June 2009

As usual Thursday is Chemo Day Care Day. We went in and as usual the nurses drew blood from my feisty little fellow. The results came and the haemoglobin was slightly low. I was so afraid that the doctor was going to order a blood transfusion. Thank God!! Doc says not necessary. We left the hospital around 12pm. The earliest so far at Chemo Day Care.

We then went over to Uncle John & Aunty Susie’s (my relatives) place for lunch before we headed back to Seremban on that 80km drive. Aidan had his lunch and had a great time playing at their place. We have been blessed with not one but two homes that are about 15 minutes away from the hospital that we can go to for anything at all anytime we need to. Rick & Grace also live close to the hospital.

When we came home, Aidan’s staple food was Spinach and Liver. At all costs, I was going to avoid another blood transfusion for Aidan!

Chemo Day Care - 25th May 2009

I(Pam) call this Chemo Day Care disaster day. Jacob had left for Munich on 23rd May. I was holding the fort alone. We got to Chemo Day Care and as usual Aidan’s blood was drawn for testing. The results came out and all seemed ok except for his neutrophils (this is the immune system) I knew that Aidan had a fever and his neutrophils were at 1%. Our doctor had warned us that Aidan would need to get admitted if he developed a fever.


I had told Audrey, my sister, to come in on Monday just in case as I already had a feeling that Aidan would be admitted. I did not say anything to Jacob as I did not want to worry him while he was away. Call it mothers instincts…. Aidan’s doctor insisted that he be admitted. I left Audrey and Kakak (our maid) with Aidan, rushed back to Seremban which is approximately 80km from the hospital, packed all our stuff and returned to the hospital. Allison, our oldest daughter who is 13 this year, stayed in Seremban with my parents. Abraham, our hero who is 4 years old this year came with me. My dear sister in-law, Becky, came to get him from the hospital and he stayed with my in-laws while the maid and I got “comfortable” in the hospital with Aidan. This stay was even more difficult than the earlier one as Aidan had to be on the bed at all times. He was on drip 24/7. What would I do without family? Let me not forget Rick and Grace (Rick is my cousin and Grace is his wife) who got their maid to prepare Aidan’s food daily. What a blessing that was. I told you God provided for us in every way. Their maid also made sure she had something prepared for me and insisted I had it before I rushed back to the hospital.

Jacob came back from his trip to Europe on Saturday, 30th May. I left Audrey in charge at the hospital, drove to Seremban, picked Allison, had lunch with her, we then drove to the airport and picked Jacob up and then headed to the hospital. Aidan was finally discharged on Monday, 1st June. Wow!! A whole month has flown by.

On the day of discharge Godma Evelyn (Evelyn is my cousin and is also Aidan’s Godmother) came to help. Now what would I do without Godma? Except she decided to desert me to visit Godpa Anand (Godpa & Godma became an item after Aidan’s baptism) at the same time that Jacob was away! She however has always been there for Aidan ever since he was born and is still continuing to do so. She is our regular ray of sunshine at the hospital.

Chemo Day Care - 21st May 2009

Aidan’s platelet count was low. Doc asked us to get someone in to donate platelets. We called many people but for some reason no one seemed to be available. Then Jacob’s colleague Lim, came to donate. Unfortunately, Lim’s platelet count was low too. Then Calvin the cousin came in and his veins were too small for the platelet extraction machine. Finally good ol’ Alex came in to save the day once again. However by that time it was too late. It takes about two hours to extract the platelets. So we went home and had to come back on 22nd May for them to give Aidan the platelet infusion. What drama…….

Note:- Platelet extraction and infusion costs approximately RM1200 every time it is needed.

Chemotherapy - Session 1

We went in for admission on 11th May at 8.30am. The doctor did a lumbar puncture a little later. Then, the chemo commenced around 2pm. There would be three types of chemo drugs that will be administered.

• One ran for 10 minutes twice a day, for 7 days.


• Another ran for half an hour for three days and


• One ran for 20 hours for two days.

I lay in bed with Aidan watching them drip him with that awfully toxic medication. I prayed that there would not be adverse effects on him. The 20 hour chemo was awful. We had to lie in bed for 20 hours. This was done on Monday and Wednesday.

Aidan responded to the chemo very well. He did not throw up all through the 7 days. His doctor was also surprised at how well he responded. I told the doctor that it was due to the fact that there were so many prayer warriors praying for Aidan. On Friday the doctor mentioned that the prayers must be working as Aidan was still his chirpy little self. We would put him in his cot when the drips were off and he would happily swing from one end to the other playing with all his toys.

Aidan’s favorite toy is Patrick the dog. His Aunty Becky got him one for his birthday. Throughout the chemo Aidan would chew on Patrick’s tail. Patrick has become his “Comfort Toy”. As such we needed to get a spare so that we could wash Patrick often enough for hygiene purposes. After much searching, we got one. Then Aunt Becky came to visit and she had got another. On Friday, our friend Ivy came to visit and she, not knowing that Aidan’s favorite toy was Patrick, got him one. Now Aidan is blessed with 4 Patricks’.

Aidan continued to eat well throughout the whole 7 days. See… We have so much to be thankful for!

God sent angels in the form of people to pray, people to take mummy out for lunch. Mummy needed to be kept sane, especially having to stay in a small, dreary looking room for 7 days. God has just taken care of all our needs in one way or another. This is certainly going to be a journey of FAITH.

We could never thank all those who have joined us on this journey, some have been mentioned and some have not. Nevertheless, we will always be grateful for the love, support and prayers you have showered us with. May the God who is Our Lord and Saviour bless you abundantly!!

On 18th May, the following Monday, we were supposed to go home in the morning. Mummy was so excited, not Aidan. He… He…
Alas, the blood test results came back and Aidan’s haemoglobin count was low. That meant he needed a blood transfusion before we could be released to go home. The whole process took around 6 hours. We were discharged that evening. We were all so glad to be out of there... Aidan included.

Before we were released, the doctor said that we would need to come in to the Chemo Day Care unit for check ups every Monday and Thursday.

Aidan in the papers!.... http://www.mmail.com.my/content/love-alone-isn%E2%80%99t-enough-help-special-children

The Operation - Insertion of Chemo Port...

Aidan underwent an operation on 29th April 2009 to insert a chemo Port. Before the Operation, we were requested to get someone to donate blood platelets for Aidan which would be administered to him during the operation as his platelets were low. Alex Wenzel, a good friend of ours was in the hospital within 15 minutes of our call.

My darling Aidan looked like a little angel in his long hospital gown. The nurses made a balloon for him out of a glove while waiting for the doctors to arrive. I held him while they sedated him, then they took him from me. My heart pained within me as I watched my helpless little one being taken from me.... but I prayed knowing that life and death..... and above all our lives... are in God’s hands.

The Funds For Treatment...

We were told by the doctor that the treatment would come to anything from RM50K – RM80K. Where would we go for that sort of amount? During this time of figuring out the finances, we were blssed to have Aunt Marianne and Great Aunt Mavis over at our place. They gave us insight and tips with regards to the funds with God given wisdom. Aunt Marianne also prayed with us one morning at 1am after a lengthy discussion with Jacob and myself regarding the financing. Once again, we were able to see God’s hand on us. We were able to secure a Personal Loan of RM70K. Praise God!!

Many friends have called asking if we needed financial help. It would have been very difficult for us to ask anyone for money but we thank God that we have been able to secure the loan and now we are able to finance Aidan’s treatment on our own.

Aidan's Journey

Aidan was born on 23rd March 2007. We almost lost him at birth due to infection caused by meconium (he had passed motion in the womb)... but being the fighter that he is, he recovered and has been well since birth with the occasional flu here and there.

In early March of this year, Aidan had the flu and was warded as his chest was very congested. The doctor did a blood test and discovered that Aidan’s platelets were very low. Although Aidan was discharged from hospital after 5 days, we kept going back weekly for blood tests only to find the platelets still low. After 3 weeks, we decided to get a second opinion and went to our trusted Pediatrician who did a blood test and then insisted that we see a Pediatric Oncologist at Subang Jaya Medical Center (SJMC).

On 29th April 2009 Aidan was diagnosed with Leukemia – AML M7. Amazingly, God had already prepared Jacob and myself (Pam), Aidan’s parents, for this diagnosis simply through our morning devotion. Our devotion is based on Our Daily Bread and that day's verse was
“Shall we indeed accept good from God, and shall we not accept adversity
- Job 2:10”

As soon as Aidan was diagnosed, we gave thanks to God that Aidan had been diagnosed at an early stage. Our God is a good God indeed. On 30th April the verse for the day was
“I am with you always, even to the end of the age - Matthew 28:20”

This gave us the assurance that God would be with us through this journey.

Prelude

This blog is meant to be a source of encouragement to all who read it. Our prayer is that Aidan’s illness and journey will be a blessing to many. This is Chapter 2 of Aidan’s life. Chapter 1 was when he was born. Now that’s another story all together…