No words

Saying good night and good morning to an urn and a picture are so very painful every day.   I miss my son so much it hurts.  It really truly hurts.

I miss you bear,  every minute of every day.

Reflections

My son has cancer...again.   Those are extremely hards words to say, let alone comprehend.  I'm still trying to cope and deal and understand what all this is.  For some people they turn to a god for answers.  For others, they deny it and try to stuff it away.  For me, I try to face it.  Face it head on, for myself and for my family, but especially for my son.  I've been saying it alot lately as I talk to people, friends and family.  This was certainly not the life I chose, but it is the life I have been given.  Therefore, I must learn to adapt to it and cope with it for Lucas.  If for no other reason than because this is his life.  He is the one getting the chemo. He is the one feeling like crap.  He is the one that wants to be alone rather than surrounded by people.  Maybe because he can deal with it better than I ever will.  Because this is the only life he knows.  This is his "normal".

I talk to him daily about how he feels.  Physically, mentally and psychologically.  I try to decipher his 5 year old responses and turn them into adult logic, but sometimes it doesn't make sense.  For instance, he has been stuck on accessing his port and receiving propaphol (sp?).  He tells us multiple times a day how it feels and what he sees and hears, and how the nurses have to squeeze his access site.  He tells us how the erwinia shots really hurt and how long the needles are.  Yet there is an absence of how the poison we call chemo, feels as it is pulsing through his little body.  We know his stomach hurts from the oral meds he has to take multiple times a day.  However, he seems to simply be dealing with his life as best he can.

Because this is his life.  He asks me everyday "when do we have to go back to the hospital"  and I tell him when the next appointment is.   He says "Ok, I'm just checking."  He has been asking us lately how we are doing.  YES, he is just as concerned about us as we are him.  Not that I'm surprised, but I admit I can become speechless by it.  

Tonight we had a few friends over.  We grilled and we had a few drinks.  We talked and laughed about life.  We tip toed around the "C" word.  It is difficult for friends and family to find the "right" words.  Here's what I want you to know.  There are no right or wrong words to say to us.  Your words will be the right words.  Ask us how we are doing, it's ok.  Or don't.   That's ok too.  We understand that life goes on.  It may not seem like it, but we know it does.  We still want to know the good and bad of your lives as well.  You are family.  You are our friends.  We still care.  Maybe we can't react as fast or at all, depending on our current situation, but remember that you care about us and we definitely care about you.

It is 3am in Chicago and my mind is still going 1,000 miles an hour and in every direction possible and I have so much more to say, but I think I need to try and get some sleep.  So in closing,  thank you for being you and thank you for listening.  Thank you for not forgetting and thank you for loving Lucas.

Good night World.

The cancer is back

I realize that a few readers aren't on Facebook.   I apologize for not updating my blog more often but we've been preoccupied.  Below is a recent post from Lucas Bear Heroes Facebook page.

We are back in the Hem/Onc unit at Lurie's.   It has been determined that Lucas now has T- cell A.L.L. Other blood work results are still pending to further identify additional markers.  We will begin initial treatment immediately to see if we can get it into remission.   This process is supposed to take about 4 weeks.   At that time Mama and Papa bear,  along with the cancer team, will assess Lucas' progress.  There is no future forecast at this time.  We must take this exactly one day at a time.  We will also be meeting with the palliative care team as well.  I'm sorry that I'm being so matter of fact about this,  but as a family we are overwhelmed and defeated.  

Priority is to continue to reduce the size of the mass (not tumor) in his chest.  X-ray showed reduction this morning.  We will repeat tomorrow.  Chemo has begun.   We will not be able to come home until that stabilizes as well as his blood counts. 

We will do our best to keep you all updated as often as we can.   We know you love our bear, but his well being comes first.

Almost there

So I realize I haven't given an update on Lucas in a very long time and I'm sorry for that.  We have had a lot going on life.  Living it,  learning it,  getting by.  
We've changed homes.   Moving from our beautiful single family home to a small 2 bedroom near by.  I'm not trying to complain but it is taking some getting used to.   I've also started a new job as most of you know.

Lucas is progressing well.  He's nearing the end of treatment! ! We have almost a month to go before he no longer has to take chemo,  no longer has to get a poke in his booboo (as he calls it). No more monthly visits to the clinic (just a few here and there for the next 5 years) to do blood work.

This is an exciting yet terrifying time of our lives.   We have adapted to the cancer way of life.  The visits,  the uncertainty,  the unknowns.   We will soon be able to see an non sedated, non medicated child for what will really be the first time.   I still remember the day Lucas and I walked home from day care and he pointed to his little heart and I had no idea that in less than a week his tiny life and ours would be changed forever.   I can't think about it without crying.  To this day,  I still think to myself that I should have known.

In mid June we will be going to Legoland Resort in San Diego,  CA all thanks to Make A Wish.  This trip has been in the works for awhile and we are all very excited to go.   By that time Lucas should be completely off chemo but still on Bactrim. Many pictures to come.

Thank you those few people that still check my blog.  I'm try to better and update more often

Cancer. ... Life. ....

My son has a full head of hair.  He smiles.  He doesn't "look" sick.  He can walk,  run, jump and play like a "normal" kid.   He goes to school and reads,  learns and studies.
Tonight my son fought with his mother and me for over a half hour.   Cried inconsolably for another half hour. Spit his medicine all over himself.  Why? Because he has cancer. Because he is still in active treatment.  He still receives chemo daily.   Steroids monthly and suffers hourly.   He fought with us because the steroids affect his tiny little emotions.   He doesn't know what to do or how to say what he is feeling.   He is frustrated.   More than us.  He tells me every night and asks why he has to take all this medicine,  all the time. 

He doesn't "look" sick, though.  So please keep that in mind when we have off days.   When we don't have answers.   When we cry.   Remember,  cancer still controls our life.  We pretend it doesn't,  but it tells us where, when, why and how.  It controls a 4 year old that just wants to be "normal".  To not have his booboo and go to the hospital.  To not take medicine and see his parents cry without explanation.

Remember,  cancer isn't gone even when it's gone.

Lucas One Year movie

Light the Night Walk October 19, 2013