This is Charmaine’s Cycle #14 chemotherapy and it doesnt look like we are nearing that ‘End Point’ I’ve always been praying for and looking forward to... However, she is here, watching her ‘High Five’ DVD and singing along to the tunes. And this IS the moment that I should treasure and consider myself blessed.
The past week has definitely taken such a toil on me, both physically and emotionally. In fact, it felt like the month of September was just full of turns and twists; tears and pain, and quite frankly, nothing memorable.
Even as we speak right now, the diagnosis is still somewhat inconclusive and our treatment plans are also somewhat in limbo.
Each doctor within the NB team seem to have extremely different opinions and it's honestly very hard to know who is correct. By extremely different, I do mean it literally.
One day, a doctor walked up to me and tell me its “MUCH IMPROVED”, as compared to the clean results we had in Singapore. I just crumbled. Yes, it could have been worse but it still hurts to know that its not clean.
Next day, another doctor walked up to me and told me its bad, because it looked like progressive disease to them.
For the non-cancer savy, PROGRESSIVE is NEVER used in a good way in CANCER WORLD.
And then I would cry a sea of tears, breaking apart completely and just wishing that I will just stop breathing literally. I am not sure if I was even functioning but I just couldnt pick myself up... However, as much as I wish to freeze time and turn everything to a complete stand-still, life continues... And I continue to function after the tears dried up.
And before you know it, another doctor will give you another picture...
Yesterday, after all the loud crying, insane screaming and quiet sobbing for days and days, we met up with her Radiation Oncologist, Dr Suzanne Wolden.
For the first time in days, I am suddenly seeing a very very very faint light coming through our tunnel of complete darkness. It isn't the light that I was wishing for, nonetheless, her compassionate self and her concern over the diagnosis gave me a sense of warmth I so needed.
Of course, nothing went according to plan yesterday. WHY am I NOT SURPRISED?
Yesterday, the plan was for us to go in and meet with Dr Wolden, to discuss all the dreadful side effects of the higher dose of radiation that I had decided to do to both Charmaine’s femurs and possibly stunt her growth, partially or completely. It was really not a morning that you will wake up to, feeling bright and happy.
Dr Wolden was our Radiation Oncologist last year when we radiated her liver and I remember her as one of the nicest ladies, truly having a passion in wanting to help us treat our kids. We talked to her assistants while waiting for her and her assistants were just as good as she is. Finally, when Dr Wolden came, the first thing she said was:
“I’m honestly not convinced that Charmaine is having progressive disease. Unless I am very certain that her disease is indeed progressing, I wouldnt want to succmb her to all these radiation. And I just called Dr Kushner, he said that he doesnt know what is going on either. The team will discuss this evening again and we will let you know the decision.”
I didnt know what to think or feel. I’ve gone through TOO MANY UPS AND DOWNS (actually it felt like it was just going down, and deeper down...) the past week, I honestly dont know what is real and what is not.
What is truth at this moment and what is real factual truth.
We mainly talked abt her right femur. Hence I asked about her left femur and she said she thought the same of the left, that it was not clear cut progressive. I asked for her opinions on what she felt was an option for Charmaine. She said she would actually feel comfortable to not do much, maybe a light chemo, allow Charmaine to have a good quality of life and re-scan in 3 months, after Christmas, to track the results and have a better idea of what is going on.
I know she is not an oncologist that treats Neuroblastoma specifically but more a radiation expert, and that her opinions may not count towards the team BUT her words have most certainly provided me a MUCH NEEDED perspective. THE perspective that I never thought was possible because everything was so grim and dark when we discussed with the other NB experts last week and who am I to question their judgement.
Amidst the grey skies, it suddenly dawned upon me that the day I met Dr Wolden was Tuesday and if i hadnt begged for another option, Charmaine would have already been on Day 2 of ICE --THE CHEMO THAT WILL COMPLETELY WIPE CHARMAINE IMMUNE OUT, AND MAY CAUSE HALLUCINATION, CONFUSION, LOSS OF MEMORY. I even had one father email me that his son went into a semi-conscious state while doing ICE. It IS THE CHEMO I’ve always dreaded.
Oh God, I simply couldnt even imagine WHAT IF I had gone ahead with their suggestion of ICE and now, this doubt of HOW true that the disease is progressive is being questioned and brought up, what terrible terrible mistake would that be!
I have not heard back from anyone yet. We are doing a light chemo now which gives me a little comfort that we are not giving her cancer cells a break to grow. And hopefully, this will give the team some time to re-organise their thoughts and plans. There are many many questions and decisions going through my head each day, but without a proposal from the team, I cannot do anything except to worry and stress.
On top of cancer, I have to continually worry about her knee which is acting up this morning again. SHE NEVER GETS A BREAK. And last weekend, her temperature spiked up and she had a bout of FEVER. [It was another drama on its own, but I am too physically drained now to even start narrating it.
I had SO MANY BREAKING POINTS last week alone that I had no idea how I am even alive today. I fear about her cancer, I worry about her knee pain, I am highly stressed over her having fever.
Jase gives me a different set of worries, making sure his homework is done, making sure he is fed, making sure he goes to school on time, making sure that I can pick him up from school on time...
“I just want to go home...”
“I just want to hug someone and cry till I fall asleep.”
“I need to give my heart a break, my mind a rest, my body a good sleep... maybe than I can pick up the pieces, carry all my worries and fears and continue to plough forth...”
Sorry I cant continue more, because this just makes me want to cry so bad...
Anyway, I just want say that despite all the ups and downs, all the insanities in our lives, we are OKAY. I am sorry to have made everyone worried... Please continue to keep those prayers coming in. I honestly NEED THEM more than ever.
And, PLEASE CONTINUE TO VOTE. We dropped to 3rd place... THANK YOU EVERYONE.
Love,
Cyn mommy
~*~*~*~*~*~*~*~*~*~
More on how to vote...
Click on this link:
http://www.refresheverything.com/armswideopenchildhoodcancerfoundation
Click on "Vote for this idea" button.
I couldn't manage to printscreen this part but a pop up window would appear prompting you to log into facebook or to use email @. If you've got Facebook a/c, logging into FB is mush easier and faster.
Within a few seconds, you will be directed back to the original page, then click on "Vote for this idea" button again.
Make sure your "Votes left today" changes to 9 to ensure that your vote has been submitted.
Today's the closing date. This idea is up to its 2nd spot again (YAY!) and we've to make sure it remains there in order to receive funding as only the top 2 ideas would be considered. I'm not too sure if it's according to GMT or what but let's all just vote.
Thank u!
Love,
Jolene
3 comments:
I think why not u get someone trusted to take care of jase while at the same time can relieve u a little from the constant care of charmine. You are so important to both kids and it will be difficult if u break down. How about ur father n mum, can they go and help u there? At least they can help up with jase/ charmine and importantly provide mentally support to u. God bless Cynthia and her two child.
I do not pretend to even begin to appreciate what you're going through, but just want to say "be strong, everyday's an achievement in itself".
BTW, chanced upon you, Charmaine and Jase around Suntec a couple of months ago, and it was heartwarming to see such an obviously loving family.
Doctors are not trained in communication skills, but to treat diseases. It’s true some are more compassionate while others may say things that cause emotional breakdown. I believe this gives you a pretty good idea which doctor to turn to for guidance. The doctors you are dealing with are some of the very best. It’s nothing wrong to expect more from others. But they too are human doing their best to save lives with what they know for the time being. It doesn't matter which doc says what, but how you feel about their recommendations. Which treatment plan you feel will benefit Char the most. Make peace with the decision you choose and move on. Stress and worry affect immunity. When parents act out in fear, children will feel insecure. Instead of showing anxiety, show your children love. Don’t put yourself in the future which you have no control with and imagine the worse. While you are here and now, uncomplicated the day, embrace the moment for what is and make the best of it. It’s really up to you to make simple changes. If you feel emotional drained out, seek help from those you trust. Blessings.
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