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Time and Milestones

on March 9, 2014

Yesterday, was the 4th anniversary of the day we heard those horrible words “I am sorry but….”   The day that the world of STUPID childhood cancer entered our lives.  Much of the day is a blur, but there are some images that are still so vivid.  Meeting the oncologist for the first time, walking up to the Bone Marrow Transplant Unit  the place Alexander would spent most of the next year.  Watching him being sedated for his first of many MRI’s. Having Richard break down in tears as we left him in the MRI.   Yesterday we participated in a Blood Drive in memory of Alexander and several other children whose lives were cut short by STUPID cancer.  It is run by another couple whose Daughter, Alexandra, died 6 years ago.  163 pints of blood were collected.  This couple organizes 2 blood drives a year, and so far they have helped collect 1,912 pints of blood!  It seemed appropriate that on the anniversary of Alexanders diagnosis, we would be at a blood drive, as he received over 35 BLOOD transfusions ( I may have lost count of some of them!) and over 58 Platelet Transfusions.

Last night we attended a fundraiser called Cure Me I’m Irish.  It is run by a group called BeatNB  Its purpose is to raise money for Neuroblastoma Research. Thanks to this group, as well as some other PARENT led groups, they have been able to fund a trial for a new drug for neuroblastoma. This drug has been having some excellent results.  The doctor leading the research was there and spoke to some of us prior to the event.  Thanks to these groups, they have been able to open up the next phase of the study in just 1.5 MONTHS, rather than 1.5+ YEARS.  It is sad really, they only needed about $200,000.  Sure, to you and me, that is a heck of a lot of money. But if you think about it – that is also about 5 seconds work of a commercial for the Super Bowl.   Really not a lot of money then.   Again, it seemed only appropriate that on the anniversary, we would be at a fundraiser for the very disease that took his beautiful life.

April 1 will mark 3 years since we said goodbye to Alexander.  Last year we went away for a few days.  We were thinking about doing that again this year, but now I am not so sure (partly because packing up us and two little ones is a LOT of work, plus all the things we have to bring with us!!)  So what we will do we do not know yet.  But as in the past, the time leading up to that day is becoming very difficult.  The day itself has not been too bad the last two years. But each year is different.

Our Daughter Julia was born 1 week before what would have been Alexander’s 3rd birthday.  So, as she has grown up we have seen where she was at the same time Alexander was.  I found it very hard to truly “enjoy” her until March 8th of last year.  Once she reached the age he was when he was diagnosed, I was able to breath, relax and enjoy her.  That was also when I started to learn how to be a parent to a HEALTHY child.  Our lives were not centered around visits to the hospital, she had regular visits to the pediatricians office.  Alexander never went back after his 6 months check up, so we had no clue what to expect.  She had a first birthday that was NOT followed by 27 days in the hospital (including time in the PICU  She learned to walk,  and talk. She has a ways to go with the talking, but I am sure once she gets it she won’t stop!  We are having fun watching her play make believe with her dolls and her kitchen.  We take her to the playground in the nice weather, and we recently found an indoor play place that she loves.  She loves to climb and go down the slide.  She is learning to eat with a fork and spoon and doing better every day feeding herself. She is no longer using a bottle, and has the straw down pat (when she isn’t pulling it out of course!)  And on March 26th, she will be 21 months 4 days old. She will be older than Alexander ever was.

I am not really sure how to feel about this.  I am so sad that Alexander never got to be any older.  Sad that he missed out on all these things Julia has learned. His life was cut short in a million different ways.   I have several friends whose children are now turning 5, the age he would have been this year.  Starting to make plans for kindergarten.  So many milestones that he missed out on.  But, I know I can’t dwell on that.  I have to be thankful for those 21 months 3 days that we DID have with him.  While he was so sick, he had so much to give to everyone he encountered. There isn’t a week that goes by that someone doesn’t post an Oreo Cookie story or recipe to my Facebook page.  It makes me smile every time I see them, because I know he is being thought about and not forgotten.

As we hit this final “milestone” with the age comparison between Alexander and Julia, I know it will be sad in some ways.  But, in others, it makes us smile to see all the wonderful things Julia is doing and learning each day.

AlexanderJohn

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5 responses to “Time and Milestones

  1. jane says:

    Nancy…. you and your family are wonderful….. we are blessed to call you friend… The joy of your little boy will always be with our family. We were and are blessed to know and remember him. You are right…. he missed out on so many things of this world…but we know it’s not the end of the story, and that a better world is ahead. I can not imagine walking one day in your shoes… can’t imagine such deep intense pain and loss. I have been grateful to read your words and think about whats going on in your mind as you’ve shared your inmost personal thoughts. I am grateful for your authenticity and candidness. We walk with you in friendship and love and look forward to days of joy with two lovely little ladies who will grow up knowing what a special big brother went before them.

  2. All I can say is that to whatever extent that anyone can, I understand.

  3. […] Wow 2.  As I mentioned in a previous post, Julia became older than Alexander on March 26.(  http://thecookiegal.wordpress.com/2014/03/09/time-and-milestones/)  and now she will be […]

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