This family blog started out just like any other ordinary ones - To capture our joy at the completion of our family.
Little do we know that it becomes our spiritual support as our son is diagnosed with LCH.
We want this blog to capture the whole journey, one which we desire and crave a happy ending. We wish that there is no expiry date to this blog, 'cos expiry means the end of our youngest member. We hope that we can serve as some consolation to whoever is unfortunate to contract this disease; we want you to know that you are not alone.
Lastly, for those who feel troubled, we hope you can see that no matter how big you feel your problem is, it can never be compared to the despair, hopelessness and despondence that will be with us for the rest of our lives.
The struggle
Sorry we went newsless for a long while. There had been developments and returns to hospital etc. More critically, we found it a challenge to visit this site no matter how we had couched the use of this site. We found this a very bad reminder of the turmoils we underwent. Will give another update very soon. Thanks for all your concern.
On the way to recovery
After spending a week in the High Dependency Ward, Caedmon is finally carted out of Level 6 to Level 7. Now there there, we have stayed in almost every ward from Level 8 to Level 4! The worst should be over.
In for the long haul
The cause of Caedmon's recent milk refusal is bronchiolitis, an inflammation of the bronchioles.
As there is no effective specific treatment for the condition, he has been on supportive therapy since, using intravenous fluids.
Last night, he was given oxygen as well as Continuous Positive Airway Pressure (CPAP, mechanical ventilation). Today, they finally inserted the nasogastric tube (feeding using tube via the nose to the gut) to feed him.
We'll be here for another week I guess.
Selina will take the day shift, I'll take over after work, the next morning she'll come by to replace me and so on... So bosses, your understanding is pleaded.
We're exhausted and sorry for the absence of updates!
We were in and out of hospital so often that we barely had time for ourselves! At this juncture as I speak, Caedmon is back in hospital stay for the third time in a week.
Back at home
We're back home since 21st Oct after we insisted on being discharged. Caedmon had his 2nd dosage of chemo. His recent bout of milk refusal was probably due to the antibiotics he was taking.
Bone marrow scan was positive. But his liver is probably affected as it showed up as larger than usual. This will result in low levels of protein. There is also a spot on his left skull. A bone scan is required for further testing.
Admitted to KK for refusal of milk
Have been in KK since 7.30 am, 18th Oct. Caedmon simply refuses to drink milk. Has been on the drip for fear of dehydration, which can occur in a short time for infants.
Outlook is not good.
Skeletal imaging showed no signs of lesions to the skeleton. But the protein count is low, which Prof Tan Ah Moy suspects the liver is affected. So as of now, the affected cells are localised on Caedmon's skin only, but the liver is a suspect.
Will be doing ultrasound of the liver and spleen on 16 Oct. Bone marrow results in a few weeks' time.
Have started on his chemotherapy.
Revelation day - 15th Oct 2008
This is the day that the extent of LCH's damage to Caedmon will be revealed.
Tender Loving Care [Selina]
Taking care of Caedmon require lots of patience, lots of time and lots of love. Not that I do not love him or have the time for him. Just that his behaviour can sometimes be unpredictable. One day, he can finish all his milk in 10mins; the next day he will refuse the entire bottle. At times, my hopes are lifted, thinking that he must have recover and gotten over the effects of his chemotherapy. At times, I am dejected, thinking that there must be some virus attacking his fragile body again. At times, I flare up, getting angry with myself for not knowing what my dear boy wants. At times, I laugh for all the funny faces he make. Every cough, every spot he has will make my heart skip a beat. I wonder when will we concur this disease.
Like Sister, Like Brother [Selina]
Caedmon just had his 4th chemotherapy yesterday. The spots on his head and face are all gone by now. The rashes on his body had almost cleared too. Some of them left scars but luckily they were all on his bum and back. He will be going for his bone scan tomorrow. The radiologist just called to inform me that Caedmon will need to be sedated for the scan. I am bracing myself for another round of emotional roller-coaster again. I wish I can take over his pain.
Caedmon is starting to get really responsive. He coos and gurgles whenever I talk to him. He laugh so loudly whenever I tickle him. He seems to understand the stories I read to him (maybe I imagine this). Caedmon, like his sister, really likes to talk. I can imagine how noisy my house will be like years down the road. But I will be thankful for these noises, they will be the most beautiful noises I ever listen to.
To believe [Selina]
Caedmon is now on his third round of chemotherapy. Visually, there seems to be some improvement on his skin as the rashes on his body and face are clearing up. The thick cradle cap on his head are also dropping off. To me these are signs that he is recovering and I want to believe that his liver condition is under control too. All these signs give me some assurance and hope to carry on.
Last Sunday, Caelyn read a story for Caedmon. It was such a heartwarming and beautiful scene. I manage to capture it on video. I am so blessed to have these two beautiful children. They have taught me lessons that I will never be able to learn in school, in books, at work. They have taught me what truly matters to me and what is most important to me. They have taught me patience and determination. They have given me courage and love. I want to believe that Caedmon will get well and some day, I will be able to capture on video again; the scenes of the two siblings reading together.
Taking stock
This had been one of the most trying weeks in my 3 decades of life, if not the most. You go through an emotional roller-coaster of lows and highs, of despondence and of hope, of neglect and of focus of attention.
The stay in the hospital was physically and emotionally demanding. But it also brought out the parental instincts that we have, that when the stakes are high, we will match the challenge with all that we had. Each time that I felt too tired to open my eyes, the very thought that Caedmon would be hungry would drive me to get myself awake to feed him. Time after time, hour after hour. Each time, I felt too tired to wake up, the very thought that Selina had not much a wink will also drive me awake to assume her roles or do that extra bit for her. We were sleep-deprived, hungry, stressed and very much missing Caelyn. But we had overcomed!
This week also opened up our eyes to this loving world of ours. We cannot assume that our families will be there to support us. But when they do, I want to tell them I am so glad to have them. I learnt not to take them for granted. And then there are your friends and colleagues. The outpouring of support - verbal, physical, spiritual and ACTUAL acts of support. Thank you all! I(We) wish we can repay your friendship and kinship.
On Friday, Caelyn's school informed us that they suspected that she may have HFMD because they found ulcer and spots on her. I rushed like a mad man to verify her medical status. Luckily it was negative. I cannot imagine what it would be like if she is down with HFMD and the decisions and actions that we have to undertake.
Deborah lent us Lim Soo Hoon's "Sam" and Stephanie lent us Ajahn Brahm's "Opening the door of your heart". I will not call them inspirational or comforting. Rather, I would say I find a kindred spirit in them. I guess only people like us can truly understand how torn we are when such an event befalls us.
At this point, I can only say, let's see how things unfold.
Tired [Selina]
I tried so hard to tell myself to carry on ... even though I have the will to do so mentally and emotionally, I am unable to physically, Every inch of my body is screaming out for rest; I need to sleep. I was a monster yesterday. I was nasty to Hee Pheng, I was nasty to Caelyn, I was nasty to myself ... I am just so tired. I was a terrible mum yesterday; I heard Caedmon crying for milk, yet I can't wake up. Luckily Hee Pheng was around to help. Poor Daddy, he is just as tired as I am.
Caedmon is still drinking less than what he should but at least he is starting to drink little by little. He had his 2nd chemo yesterday too. We also received results for his bone marrow test. Good news are doctor says his condition should not be life-threatening and his bone marrow is normal. Bad news are his liver is affected as well as they discover a lesion in the bone (head) from his x-rays. I was too tired to react to all these information. I just want to focus on getting him treated and to recover.
On a lighter note, Caedmon is a very cheerful baby despite his discomfort from all the chemo and medication. He responds to us and also smiles when he hear us calling his name. He has such a beautiful smile. He is so lovely.
Must say thank you to all who had help us while we were so tied up in the hospital, who encouraged us when we thought we couldn't carry on, who smsed every now and then to check that we are coping. We were so lucky to have friends and family who cared so much for us.
We wanna go home! [Hee Pheng]
We are very tired! We wanna go home!
Caedmon has gradually regain his appetite for milk. I personally found it more evident especially after he finished up his course of antibiotics for the bone marrow test. But it is still very challenging at this moment.
We have to feed him every 2 hours. More correctly, we try to make him drink. He will take in about 50 to 60 ml each time. You do your math and that works out to be about 600 to 720 ml daily. But it is not enough, according to the doctors. An infant must drink 150 ml for every 1 kg of body weight and he is 5.3 kg. Include his condition and the doctors will only be appeased if 800 ml are consumed.
But it is not simply just a numbers' game. In order for the young master to drink, he has to be coaxed into a sleepy state. Otherwise he will just be crying. Then the milk has to be warm, which it often is not in the cold hospital isolation room. And to warm it, the dumb Dr. Brown/Aprica bottle's funnel has to be removed. Add that drip he's on, and what we get is a mammoth round the clock work that needs 2 people to help Caedmon.
Thanks for the food friends.
Thanks for covering my work, colleagues.
Thanks for taking care of our Caelyn, my parents, sis and BIL.
The one sentence that sums up how apologetic we are towards Caelyn, is when she told my mum that, "I do not want to close my eyes because, if I do, when Daddy comes and pick me, I'll be asleep."
Pain Pain Pain [Selina]
As much as I tell myself to be prepared ... I wasn't at all at KKH Children's Day Therapy Center. Caedmon was there yesterday for his bone marrow test and chemotherapy. I can't describe my pain when I saw my son go through the test, to see both his legs punctured so as to extract bone marrow samples, to see his tiny face strapped with oxygen mask, to see his tiny hands poked with needles and plug. The pain was worse than piercing my heart with thousands knives. I can't find words to describe my pain. I can only cry ...
I hate the fear when we were receiving his tests results. It was such a torture to wait and yet to be disappointed time and time again. We were told that his protein count is low, hence liver may be involved as well. Doc wanted an ultrasound to confirm. I appeal for the ultrasound to be done today so that we can receive his bone marrow and ultrasounds results together. I don't want to wait week after week. Whether good or bad news, I want to know it all at one time.
Caedmon started his first chemo session yesterday too, he was so tiny yet so brave. Even the nurses said he was a brave and happy baby for he cried very little. He was put on steriods as well. I can't bear to think of all those side effects. Although everyone console me by saying that they are temporary and only comestic, I can't help but cry. My heart is bleeding, all a mother ask for is her child to be happy and healthy. Yet, I can't give these basics to my son. I am such a failure. What an irony ... I worked so hard to give the best that I can, to be the best that I can, yet I turn out to be such a failure ...
I am going mad with pain. How many more tests must I (we) go through so that I (we) will become stronger and better persons? How many more times must we be tested? How many more times can I (we) take it. I don't want to be a strong and extraordinary person, it is just too difficult.
Optimism [Selina]
Time seem to pass by so slowly today. Caedmon will be going for his bone marrow test tomorrow. I don't know what is in store for us, what I heard about it is that a small piece of his bone will be cut. My poor boy, I wish I could bear his pain. We will also recieve results for his blood test and skeletal imaging tomorrow. I can't bear to even think about it ... What if ...
I wish I could share the optimism of our relatives who keep assuring us that it is cradle cap and diaper rash and that Caedmon will recover when he reaches 7 years old. Will my boy reach 7 years old? Grandma called just now and asked ... 'How is my little boy, has he recovered?' It took me alot of strength and courage to blurt out 'No, he will not recover so soon." Sorry gran, sorry for being so curt, sorry for being so rude, sorry for being so cold ... for if I talked further, I will simply break down and cry.
I am so scared ... there are no words to describe how scared I am. I carried him the entire morning today for I was so scared to let go. Dear Caedmon, please do not go anywhere without Mummy. Please stay near and close ...
I am trying very hard to be brave. I am trying very hard to believe that things will be fine. I am trying very hard to be level-headed, to be calm. I am trying very hard to carry on. But at this moment, I don't want to be myself anymore. I don't want to be the Selina who is calm and level-headed. I don't want to be the Selina who is brave enough to carry on ... I just want to be able to carry my son all day long ... watch him grow... see him play... listen to his first words.
Consumed by fear and anxiety... [Hee Pheng]
I numb myself with work. Mundane, repetitive, numerous... so as to drown the fear and anxiety that I have for 15 Oct.
I have so much apprehension for the R-Day, that I cannot function normally.
I feel pain... the pain of Caedmon going under the scalp to remove part of his bones. OUCH! My poor boy!
I feel more pain... the chemo that he will go through. OUCH OUCH! He is so small! Is there an alternative?
I am anxious... What lies ahead on 15 Oct? What is the extent of the damage? WHY WHY WHY? Nobody can understand how Selina and I feel right now. NOBODY!
I have a lot of anger and fear. I feel helpless. I feel powerless. Dun let his life seep away. Please... somebody... save my child...
Caedmon: Daddy's useless... I'm really sorry to bring you sufferings...
Fear... [Selina]
Perhaps to many friends, I (we) seem to be in great control of myself (ourselves). The truth is I am not ... fear injected me everyday. I am scared. Scared that I will lose my boy. Scared of all the repercussions and side effects that the illness will have on him. Scared that he will not get to wear all those clothes that I had bought for him. Scared that he will not have the chance to drink all those breastmilk that I had religiously expressed. Scared that he will not have the chance to go to school. Scared that I will not get the chance to hear him call me Mum.
I am angry, I am anguish. Even though I know we should stop asking ourselves why and start focusing on what we can do; I can't, WHY MY SON? If I don't deserve to live my life happily ever after then let all those misfortunes and illness befall on me, not on my children. Why punish my son? I felt helpless as there is nothing I can do to rid him of this dreaded condition.
Crying is now part of the agenda everyday. I can't stop crying; crying out loud and crying silently in my heart. Caelyn saw me sobbing today and came over to comfort me. 'Are you sad about Caedmon?' she asked and gave me a hug. She told me things will be ok. My dear Caelyn, things will never be ok ... even if Caedmon's LCH is localised only on the skin, we can't be sure about how his chemotherapy will affect him.
Thanks to everyone who had shown care and support ... especially so to Soo San, Stephanie and Veronica who had share their experiences with me. They are indeed women of great strength. I don't know whether I have the kind of courage that they have ... I really don't know.
I am not made of sterner stuff! [Hee Pheng]
Thanks Francis and Soo San for your instantaneous support! Can't describe how grateful I am to this couple, especially Soo San for going beyond what I had asked for.
I am not made of sterner stuff. I am not brave. These are some terms I heard about myself since 6 Oct. The truth is, I am more scared and upset than I appeared. Scared because I do not know what kind of punishment my child is going to take. Upset because there is nothing this father can do for his child. I know where my dear friends are coming from. But the truth is, I am, or we are, really not OK!
I used to sing this song for Caelyn (to the tune of Que Sera Sera). But I find it increasingly difficult to sing it for Caedmon.
When I was just a little boy, I asked my Daddy, what will I be?
Will I be famous, will I be rich, what will be, will be.
Dear Caedmon, Caedmon. Whatever will be, will be.
The future's not ours to see, dear Caedmon, Caedmon.
When I'm of age to go to school, I asked my teacher, what shall I do?
...
At this point, the singing usually fade. Will Caedmon go to school? Does he still have a future? I do not like this "whatever will be, will be" thingy. It smacks too much of resignation to one's life. But isn't that the case I am in now? Tell me please, anyone of you out there, who has a cure for this LCH, that the treatment will be side-effects free, and that chances of remissions are high. Save my child. You can have anything you want from me, even my life.
I cried again today. Despite telling Selina to be positive. Guess I have never stopped crying. And my heart is bleeding. It goes out to Caedmon. And the boy cooed at me as my tears just flowed, as if telling me that he will be alright, don't weep for him. I did not imagine this! Selina can testify to this!
Treasuring everyday ... [Selina]
I had learnt to treasure everyday of my life with my children. I used to have big dreams and plans for them. Now, I just want them to be healthy and happy.
Poor Caelyn, she must be feeling the sadness too, yet at the tender age of 3, she may not know how to verbalize her feelings. Hence, she articulate them through her behaviour and her actions. She is a sensitive child, I believe she knows what is going on in the family and that her baby brother is unwell. It is unfair that she too has to shoulder this sadness with us. I have to constantly remind myself not to neglect her as well, she too needs our attention, our tender and loving care.
Caedmon is doing well. He is as active as ever, as hungry as ever. To him, life is no different from the day he was born. He is a cheeky little boy who enjoys listening to us talking to him. He will coos and ahhs as if he is talking to us as well. He hates to bathe, haha. To shower him is a struggle, he has such strong legs, he is such a strong boy so how could he be ill.
Caedmon's condition has also drawn Hee Pheng and I closer than before. Without his support, I guess I would have collapsed and lose it all. I love this man more than ever before.
The next few days will be tough as we await the results of his blood test and skeletal imaging. I am hoping for the best and prepared for the worst. I hope we will have the strength and courage to carry on.
I want to wake up from this nightmare [Selina]
All I asked for was a simple and peaceful life. I never dare asked for more, for I know I already am given more than what I deserved. Two beautiful children, a loving husband - to me, it was a childhood dream come true. I just wanted a happy family life.
Our life changed since the day (6 October 2008) we recieved Caedmon's biopsy results. How I wish I could turn back the clock and start all over again on 13 August 2008. How I wish I can wake up from this nightmare and return to 13 August 2008. How I wish I had been be more observant over this skin condition. How could I dismiss those spots to be baby acne. All these might not changed anything but perhaps, it will make me feel less guilty.
My heart ached when I had to see my boy go though those tests - blood test, skeletal imaging, bone marrow test. He is only 7 weeks old, how much can his tiny body withstand? He is such a brave boy - he indeed live up to his name (Wise warrior). How I wish I can take over his pain and his discomfort.
My brave boy will not give up, so will Daddy, Mummy and Jiejie. Yes, we will go Switzerland together. My brave boy - we will wait till you are able to say your first words, we will be able to hear you call Daddy, Mummy and Jiejie.
The start of the Nightmare [Hee Pheng]
The reality finally hit us like a brick wall.
Caedmon has Langerhan's Cell Histiocytosis. His life is changed forever. So are ours. Like an invisible barricade, our child will be different from your child, his child, her child, and the child on the street. Like an invisible chain, LCH has restricted our lifestyle, our outlook to life; yet it enriches our family bond and has given us a better appreciation of what it means to be alive [though I rather not have this enlightenment].
Please look at my boy. Does he seem to have this dreaded disease, so vanishingly rare that it afflicts only 5 in a million? This train of thought always wells up my eyes. All I wanted when he was born was he be well and healthy. Is this too much to ask? We have friends whose children had passed on, whose children had autism, whose children had special conditions. So we were contented and grateful if our children are well.
Some children are born to certain people because these parents have the ability to take good care of them. Though I believe and trust in this statement, I really have no wish to be one of these parents. Not that I reject Caedmon, but why should be pain be inflicted on him? Can I bear his sufferings?
We'll go Switzerland dear Caedmon. Daddy and mummy will definitely bring you and Jie Jie to this wonderous place that we love. You will BE NO DIFFERENT from his child, her child, and the child on the street.
What lies ahead?
Handling Caedmon is all about safety. Handling Caelyn is all about sensitivity. Handling both of them at the same time needs sanity!
We're not biased!
It's not that only Caedmon gets the attention! Caelyn is getting all my attention, except that they are all in video.
By the way, Caedmon's Chinese name is ιδΉη Chen Yi Xi. Caedmon is a Welsh name for a wise warrior, while his "Yi" means "a talent with virtues" and his "Xi" means "bright".
1/8/2009 4:26:09 AM - 002052725645
Dear Hee Peng and Selina,
I was told of your blog by Cindy and when I read about your struggles and fears, tears came to my eyes. As a parent myself, I feel strongly for you, the pain and sense of helplessness you are going through when you see your child suffer and you can't take away his pain no matter how desperately you want to. Both Caelyn and Caedmon are blessed to have parents who love them so much. I pray that Caedmon will continue on the road to recovery. May your love for them continue to keep u strong and may God give u comfort and strength and lay His healing hands upon the little one. My family and I will be praying for you. Take care of yourselves too.
Karen Ho
12/13/2008 3:55:26 PM - 002035333566
Dear Selina and Hee Peng,
I am so happy to learn that Caedmon is getting better. Thanks for the smses, I really appreciate the updates. It has been a long while, but lets count the blessings.
Both your love and care for the children has brought beautiful moments where Caelyn showed her love to Caedmon. Caedmon has also responded well to the help he is given and he is growing and interacting with all of you. That is a wonderful development - I am so happy for both of you.
Caelyn and Caedmon are blessed to have both of you as their parents. I will continue to cover all of you with prayers.
Thank you for keeping us updated... Caedmon has become part of our life's journey too...
Take care of yourselves...Be strong, Selina and Hee Peng.
11/21/2008 8:15:14 AM - 002034862276
Hi there
http://maxmatheson.blogspot.com/
I've posted a comment before.My friend's little boy has-had LCH too. They found out when he was just a few month old.His name is Max and he is 2 years old, he had gone trough many chemo terapy's.It was two years of horror, we tought many times that we are going to loose him.Now he is doing fine and he is as good as cured from LCH, just by receiving chemo treatment, no bone marrow transplant was needed, the doctors allways recomended bone marrow transplant, but Max's parents didn't want to do it, unless there are no more other options. Many negative news about bonemarrow transplant in that age. Once you go for bone marrow transplant, you won't be able to go for chemo terapy but he is still receiving chemo terapy, to clear all the spots(death LCH) and to make sure it will not reaccur. He is at KK at this moment, having side effects from the chemo but is doing well. It might not look that great for Caedmon at this moment, but there is a big chance of winning the battle, so don't give up. I wish you good luck and hope Caedmon has an guardian angel just like Max :) Bleess you.
11/18/2008 2:15:37 AM - 002040474492
Hi HP,
Caelyn and Caedmon are so cute.... Caedmon, just like his name if I remember correctly what you told me, has a determined look like that of a fighter and warrior. He is a tough one, he will emerge victorious from this.
My prayers are with you and your family. God Bless.
Anne
Montfort Sec
11/2/2008 4:04:17 AM - 002037339464
Hi,
When I first opened up this webpage I couldn't control myself. I cried uncontrollably. "5 in a million!" Why must darling Caedmon be one of the 5, why can't he be one of the million? Its not fair!
Selina and Xiping, please continue to be strong. Let me know if you need my help. I will pray for Caedmon. As in the chinese saying, "boat reach bridge head will automatically straighten" so have faith, Caedmon will win the battle. He will grow up to be a very handsome young man.
10/21/2008 2:50:37 PM - 002035333566
Dear Selina and Hee Pheng,
Pls be strong... I know you will find that strength...
Caedmon is a strong boy and he knows how much you both love him so I am sure he will fight the condition....
Remember to take care of yourselves... so that you can provide Caedmon the strength he needs... he knows through your loving touches and glances...
Hang on there and we are here to support you all the way... your friends in CSS will support you all the way...
Pls ensure that you have ample rest, for Caelyn and Caedmon will find their love and joy through your loving touches and glances...
Take care... I am praying for all of you everyday...
With love from,
VN
10/20/2008 5:11:58 AM - 002035810793
My dearest Selina & XiPing,
I understand it is not easy for anyone right now especially both of you as parents. My heart is painful to know the state of my little grand nephew Caedmon. No matter how difficult, how hard, how sad we are at this very moment, we have to stay strong for him. I know he can fight the battle. He is a very strong baby boy. Please let me know if I can be of any help. I am all out for you.
Thanks to all friends and readers for your support and encouragement shown to my niece and nephew-in-law. Let's put our hearts together and pray for the recovery of little Caedmon.
Love,
Ah Yi
10/17/2008 12:28:02 PM - 002027324296
Hang on. I know it is hard to see your own child having this disease. I can feel the pain. Whenever i read each and every of your post, the tears are just around my eyes. And sometimes, i ever break down and started crying. But we have to be strong. Caedmon needs our support and our care. We have to show him that and not the upset part of us. If he sees how sad or disappointed we are, he may think that he is a burden to us. Although he is just a baby, he may already know this kind of stuff. So stay strong. We will always be behind you, giving you the support regardless of what the results are.
10/17/2008 3:26:15 AM - 002034862276
Hello there
Caedmon and his sister are so sweet,I wish your family all the best in the battle against LCH.I am a friend of Max's parents,Max has LCH too since he was a few month old,many times we thought that he might not make it,but today with 2 years of age things looks more positive and we have hope to win this battle,Be strong and never give up hope,many prayers are with you :)
regards
Arlette(Leila)
10/16/2008 9:46:09 AM - 002034549743
Dear Selina & Xiping
Hang on, Caedmon will definitely recover. We pray for his recovery, he's a brave strong boy. Take care.
10/13/2008 1:18:30 AM - 002033382212
Hi Selina and HP,
Caedmon and Caelyn are beautiful :) And this is a beautiful site!
Wanted to share that through my surfings, i came across a blog of another LCH survior, http://maxmatheson.blogspot.com/. From the pictures, it does look like he is receiving treatment in Singapore. I hope it would be useful for you.
love
steph