Monday, February 10, 2014

How do you sleep at night...

I don't sleep much and when I do, it's not well.  No parent who has a child with cancer does.

The night before scans or a bone marrow biopsy/aspiration is one of those nights that is extremely difficult to get any rest.

Braden's autism gives us the blessing of him not knowing what he faces the next day. Honestly, that really is a blessing because he doesn't lose any sleep.  

Each time we take him for treatments or procedures that are going to be painful, I feel horrible. 

With that innocence and trust he places in us to keep him safe and happy, it weighs heavily on our hearts that we have to take him to the hospital to allow painful things to be done to him to try to help him survive.

Another thing that every parent of a child faces.

It's tough on the heart...





Braden just had a bone marrow biopsy and aspiration and those are never fun. Most children with cancer have to endure these, some fairly frequently. As of today, Braden has them every three months.

Let me show you what these brave babies go through.

First, this is the child we enter with...full of giggles and laughter and energy...



Braden does not go under full anesthesia. Instead, we do his bone marrow biopsy and aspiration in an exam room in the clinic under "conscious sedation".  Yes, he could be put into a full, deep sleep but when they do that, they have to run a breathing tube and that isn't always good in Braden's world as far as recovery.

He doesn't feel any pain during this conscious sedation, but he is aware that something is happening and he can feel the pressure.

He does not enjoy the experience and once we put on his pulse oxygen monitor, he realizes he is going to have to "lay on his tummy today" he tries very hard to convince us that we don't need to do it.

We also give him some versed which makes it so he doesn't remember what happens during the procedure...

I would like some too. 

I always stay in the room and help hold him down. Yes, he tries to get up and he frequently tell us he wants to go home now....

and that he does NOT want a bandaid.

He is EXTREMELY emphatic about that!

I stay by his head (with his tigers) and put my body weight across his shoulders and kiss him and tell him how brave he is while Dr. Neville goes about the business of the biopsy and aspiration.

The puncture is done with this treat...


See that long, thick needle? It has a core...the top is what you think it is...it's a screw that is twisted and turned into his his/back to create a hole in the bone.

Read that part again...HOLE IN THE BONE....

sounds pleasant doesn't it?

Now, imagine holding your child down while he is telling you he wants to go home...PWEASE MOM while they insert this and screw it through his skin into his bone.

Next, she uses this knife to core out a piece of bone marrow...


I will admit that I never watch the actual process...it's hard to see from my location and I'm focused on keeping him from sitting straight up and keeping him calm.

These are other tools of the trade...



If you are squeamish about needles and medical things, you are probably cringing right now. 

I'm not squeamish, but I cringe at the thought of this being shoved into my baby.

And doing it is not a choice, if we want him to have a chance to live.

And that....is messed up...

way the hell messed up!

He always does a great job and today he loudly said, "NO BANDAID" after Dr. Neville did the aspirate.  So as Dr. Neville put the bandaid on and he once again reminded her "no bandaid", without skipping a beat she told him that "Angela did it", she's our nurse. We all busted out laughing as poor Angela said, "Heyyyyy"! :)

Funny how with all of that tray of torture tools, he is most worried about bandaids...

(but he really does dislike bandaids)

After the procedure, Dr. Neville gave him lots of hugs and snuggles and he started to wake up.

We have to force him to lay down and chill because he tries to get right up and run around.  

He's 100% courage and 0% balance on all of those sedatives.  

This is the face we leave the hospital with...



Once home, we snuggle...



And take silly selfies per his request...




Kids with cANCER are brave....brave beyond the capacity of explanation of the word brave...

Parents of kids with cANCER follow their kids example of bravery...

and that is why I stay in the room while they do this procedure.

That is why I help hold him down...and talk to him...and kiss him...while they jab those horrible long needles and knives into his back and bones...

because I want to be the one there for him when he cries out to go home...

and not have a bandaid.

It's also why I don't sleep at night.

Someday in the future, people will look back at this horrific procedure and its tools and wonder why we ever had to do it that way...

sort of like how we look at leaching now.

I pray for that day...I work for that day...and I HOPE...