One step at a time...

Once again, I have no idea where I last stopped with our updates and I am getting increasingly confused with dates and events. Memories are jumbled and emotions are all over the place.

Nevertheless, we continue to try and make the best of what we have and pray for the best on a daily basis. Some days, it gets tougher, while some days, the simple pleasures are enough to make me forget our challenges momentarily.

On a typical difficult day, PAIN is something we struggle to deal with. Charmaine, having to cope with the excruciating pain and the physical discomfort of being immobile. Myself, often crumbling at the sight of seeing my own baby suffer and crying, and yet I am totally helpless. Jase, having to help me run around while Charmaine is immobile.

On the other few good days, with no pains, no fevers, no hospital appointments, and no chemos, we get to be like your average family! Waking up to a lazy Sunday morning, with no plans other than rest, play, eat and poop, it is such a joy. We get to smile, laugh, complain about the cold, whine about the boredom, stress about what to have for lunch and dinner.

In terms of treatment, Charmaine has completed 5 days of chemo (Cyclo/Topo); her #14 cycle on 1st Oct. In the past week, Charmaine has also completed 3 sessions out of the scheduled 10 sessions of radiation to both her femurs, which will run through to 19th Oct.

Charmaine’s right knee pain subsided on the day after we completed chemo. Coincidence or chemo at work, guess we will never know. But our ‘normal’ life always seems so short-lived. Barely 6 days later, yesterday she started to walk with a limp again. BUT THIS TIME ITS HER LEFT KNEE. Do you know how she moves around the room? She uses her butt to ‘slide’ around like a snail... My heart aches so much. However, she remains cheeky and cheerful. She would always giggle and laugh and seem to enjoy her new found mobility. Charmaine is the reason why my heart is numbed with pain, and yet SHE is also the reason that I am still able to see hope and feel the happiness.

On the 8th day post chemo, when we tested Charmaine’s counts, it has already dropped to zero, nothing. That means she has no immunity at all. This is what I fear most and is also the reason why I dread high dose chemo so much... The chemo that Charmaine just did, is supposedly light and some kids never even go neutropenic. Yet, my dear baby, not only does she goes completely neutropenic, she also reaches neutropenia at a much shorter time. Usually, the body’s immunity gets hit only around day #14 and recovers around day #21. But Charmaine’s immnunity reaches zero almost after we complete the chemo... It really sucks... All these just mean one thing, that her bone marrow is so so so weak now... so weak that the danger of her bone marrow not recovering on its own is getting higher and higher...

Everyday for the past week, I have pretty much been living with constant fear, worry and paranoia. Her being neutropenic means that if she spikes a fever, it will be a direct admission into inpatient ward and over here, we have to stay much longer until her ANC reaches 0.5! (May take almost 2 weeks since they bounce up around day #21.)

Neutropenic from the light chemo, and daily radiation just means that her counts will be further suppressed. So she is going to remain neutropenic for a much longer time... and of course, transfusions wouldnt be a surprise. In fact, Charmaine had her first blood and platelet transfusions yesterday.

Neutropenic, the immobility that comes with pain, the constipation that comes with immobility, fever risk, low platelets and blood... these are Charmaine’s daily challenges and my daily worries and fears...

The past week, I have to drag both Jase and Charmaine up by 6am, rush to hospital, wait for Charmaine to complete her radiation and rush both of them down to school to drop Jase off, and than rush back to hospital again for more procedures, if necessary. And of course, everyday, I have to keep track of the timing, making sure that we rush back to school in time to pick Jase up from school. And if not, I have to call for help...

Alright, thats pretty much what is going on in our lives while I have not been updating... Its time for me to go check out on the kids...

May everyone be blessed with happiness and good health.

Love,
Cyn mommy

PS: We won the USD $250,000 grant for MSKCC, thanks to everyone single one of you who have been voting daily for us. THANK YOU SO MUCH. With options running low, this means too much to me!