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TEAM NICO

Our son, Nico, was diagnosed with HR pre-B ALL (acute lymphoblastic leukemia) on January 2, 2013. This is a record of Nico's progress.

WELLNESS WARRIORS

Fate Loves the Fearless (James Russell Lowell)

8/28/2013

4 Comments

 
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"One could say that fear is always based on something that has not happened yet, and is therefore a fantasy of our mind rather than fact"

Nico made counts. He has had a really strange cough for a few days though, so he will have to be examined tomorrow and then they will decide if it is safe to sedate him for the lumbar puncture (spinal tap) and chemo. If he can start, this will be our final four weeks of frontline. I think our doctor will let us press on, but I do not want to count our chickens just yet.

I know we have complained a lot about the delays, which are actually a normal part of this. But we had certain dates in our minds for a long time – it was a mistake to reinforce that Nico would start school on the first day or celebrate his birthday without chemo. So after spending a few days pouting, we realized that we could easily take advantage of the fact that Nico does not know when his actual birthday is. Thus, Nico’s birthday has changed for 2013, and he is now a Scorpio for a while. We hope to have a great birthday/end-of-frontline/thank-you-for-all-your-support party then, but we will have to wait to see how he handles these next four weeks before we pick a date.

My mom retired early and came up to help us take care of Nico for a few weeks. It has been a tremendous load off of me. But mostly it is a lot less lonely, and I am so grateful for her.

So, here we go. I am happy to put this behind us, but afraid of leaving the reassurance provided by heaps of chemo. There is a strange comfort that the beast is actively being beaten back, kept at bay and permanently destroyed. Now we have to hope that less chemo will maintain him. Hope can be scary. Both Jeff and I deal with the fear differently. Jeff wants to stay positive and not spend any energy pondering an unwanted outcome. I understand that 100%. But I feel like I have to face down my fear. I want to know everything about the enemy, and know that if the beast were to rear its ugly head, we could jump that hurdle. I have to learn not to fear it, and this requires I face it. This mentality comes from my nursing history. Throughout nursing school, I told everyone that I never, ever, under any circumstances would work in pediatrics. When I became a float pool nurse, I used to make one request: do not send me to the oncology floor (the only mixed adult/pediatric unit) because I could not stand “seeing those bald kids pushing their IV poles of chemo around.” When I was offered/told to get my chemo certification (I never before turned down free training), I “forgot” to schedule it. I avoided and feared the exact scenario that has been thrust upon my own child. So the lesson, for me, is that fear bestows power exactly where you do not want it. I do not want to live in fear. I am no longer turning away or avoiding what scares me. As I have said before, I have to face my fear, stare it down, refuse to view it as a possible failure, and believe that life just has hurdles, hurdles that we can and will jump if need be.

Thank you for your love and support. We know it is there. We feel it. And it sustains us.

Much love to you.

“Once we truly know that life is difficult — once we truly understand and accept it — then life is no longer difficult. Because once it is accepted, the fact that life is difficult no longer matters.” ~ The Road Less Traveled (Paul, this always reminds me of you)

4 Comments
AUNT CASA
8/28/2013 02:04:20 pm

Your strength and love is empowering

Reply
Adriana
8/28/2013 03:12:48 pm

YES!!! I've been waiting all week, since I read Jeff's blog, for this one.
We all live with fear to some extent. But you are a strong mom and woman! And Nico is an amazing strong little boy. XOXO to all of you.

Reply
Dana
8/29/2013 02:25:02 am

Can't wait to come see you guys!!

Reply
AVIANA
8/29/2013 05:58:02 am

Yes. My beautiful scorpio bald boyfriend is gonna make it through. Your strength in all of this....there are no words.

Reply



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