Brady’s Journal – “I’m sorry to tell you your baby has leukemia.”

On October 12, 2009 our then 13 month old son was diagnosed with cancer.  Two years have past and still the pain of his battle haunts us.  In tribute to his life I will share his journey in hope that it will help bring about more awareness to the horrors of this horrific disease.

Brady’s Journal – “I’m sorry to tell you your baby has leukemia.”

It’s been 2 days since my 13 month old son Brady Michael was diagnosed with Leukemia.  Since the moment my wife and I were told our lives have been turned upside down and inside out.  It’s taking all of my strength to stay focused, alert and clear headed.  My son came to the hospital with a bacterial infection and 6 days later is fighting for his life.  

The immediate challenge is trying to understand something I know nothing about: Leukemia.  I had no idea there are oh so many different types and then even more sub-types of the types.  I am told I should not use the internet to learn about this disease, that’s it’s too early to even know which type of Leukemia Brady has let alone how to treat it.  

Brady’s Doctor is leaning towards acute lymphoblastic leukemia (ALL) which is the “best of the worst” according to my son medical team and I do mean team.  If Brady has ALL it’s very treatable with an extremely high success rate of curing. However, the first bone morrow biopsy test results were not conclusive a second bone marrow biopsy was required because there is a chance Brady has acute myelogenous leukemia (AML) which is much more aggressive disease with a much tougher treatment regiment, a much greater mortality rate and will require Brady to spend 8 months in the hospital.  We are all praying for ALL.

From the first day my son arrived at Robert Wood Johnson University Hospital in New Brunswick, New Jersey he has been picked and poked at so many times and in so many ways it has already become a blur.  From 3rd year medical students, 3rd residents to attending infectious disease doctors, hematologist oncologist doctors, anesthesiologist to phlebotomists, and lets not forget the numerous nurses, medical technicians, and everyone else I want to scream at the top of my lungs “Leave my Baby the F*@K alone.”  

Now granted I am writing this journal entry on about 3 hours of sleep but it is just so over whelming I want to scream.  My advice; don’t take anything anyone tells you as absolute fact. You will be told so many conflicting and down right miss leading scenarios your head is going to explode.  Speak up and NEVER and I do mean NEVER let a phlebotomist near your child especially if they are infants or toddlers.  These ghouls don’t know jack s$%t about how to draw blood from a baby and it will not only hurt your child it will make a grown man weep in sorrow and despair.  When someone wants blood and they will want more blood then Dracula find a nurse, a doctor hell a plumber I think would do a better job just don’t let one of those under trained incompetent a-holes near your child.  

Another thing; if you see anyone not following procedures and/or protocol make them stop doing what they are doing and get help immediately. Brady had a nurse decide is was ok to skip a saline wash of his IV line which resulted in 30 minutes of living hell for him.  The IV line was not functioning correctly and her short cut not only necessitated the removal and replacement of the IV line but caused my son’s hand to swell up like a plum. And all of this crap occurred after I asked her if she was going first use the saline before administering the medication and her response was it wasn’t necessary.  Well, it was and it taught me a valuable lesson: SPEAK UP! This is critical if you child is too young to talk, you MUST become his voice.  It does not matter if you are liked or thought to be an a-hole it’s your job to protect your child and no one other than you is really going to do this.

Sharing the Load – You must insist your spouse (in my case my wife) go home!  This will take as much effort as fighting off the incompetents.  I don’t want to be a sexist but she is not going to take control when you are at work if she is exhausted and exhausted she will be.  You must insist that you both share in the night time duties and after 5 nights in the hospital I am learning quickly it is the most difficult and stressful time of day.  I don’t why but so far it seems to be.

Hospital Time – Another joke!  You will learn quickly that “someone will be right there to help you,” means about an hour and an hour means about 3 hours and anything that can be put of on the next shift will be.  Just accept this because there is NOTHING you can do about it.  That said, if your baby needs help get it immediately and do not accept anything but that.

Crying – If you have granite for a heart you are still going to cry and cry and cry.  This is the most stressful situation I have ever been in; in my entire life.  I didn’t think I could cry as much as I have in the last 2 days but I have and I am sure I am going to cry a lot more before this is over.

Well, I’ve got to get my butt in gear and get ready to start my day job which right now is not as important as it once was.  Let’s chat again tomorrow…