transplant plus one.

I wanted to post this yesterday while my emotions and thoughts were raw but my eyes simply wouldn't allow it (and sweet boy needed extra cuddles to get off to sleep).

Yesterday was transplant day.  Just after 11:00am Kiah's new stem cells were transferred into his body through his Broviac (central line). There were several Nurses in the room as well as his primary transplant Doctor. We comforted our boy as the cells were pushed in. He screamed in pain and anxiousness but in just a few short minutes they were in his body. All we could do was try to reassure him that he was okay. He comforted himself by saying "all done... all done" over and over and chewing the corners of his monkey while sobbing. It took just a short time for his breathing to slow and his emotions to settle out. Immediately the smell of creamed corn filled the room (apparently this is normal for stem cell transplants due to a preservative used to save umbilical cord blood stem cells and it takes a few days to dissipate as he is excreting it through his lungs). It is quite potent but I suppose there is far worst things he could smell of. 

We spent some time relaxing and by the afternoon he was already playing basketball in his hospital bed. This morning he ran around the room, you guessed it, playing basketball, football and doing some sort of touchdown dance with Daddy.

I feel some relief knowing that the cells are now in his body. But I am also fearful of how his body will respond to them over time. The next few weeks are critical as the Chemotherapy continues to wipe out his own cells. He is at an extremely high risk of getting an infection and not being able to fight it. If this stage is successful in about 3-4 weeks his blood counts will begin to climb as the new cells engraft. 

In the meantime we wait... Wait and shoot hoops to the smell of creamed corn. 

Oh and today is day plus one.

scrambled.

In the back of my mind I've been sorting out what this would look like, what would be my message, what I would try to get across in this post.  I wish that I would have come to some sort of conclusion, consequently this is going to seem kinda scrambled.  Fitting I guess given my mental state.  I'm hanging in there for the most part.  My emotions ride the wave of the roller-coaster Kiah is on, changing every second.  My boy is managing the best he can given all of the drugs he has in his tiny body and given his limited toddler coping skills (pretty sure he is making up now for having never thrown a tantrum in his whole life).  

The good news is that since the first few hiccups, Kiah's Chemotherapy and the rest of the conditioning phase has gone pretty smoothly.  Trust me I know that we have a long way to go as the giant transplant calendar points out, we haven't even gotten to the plus numbers yet.  And that on a bad day is horribly depressing.  One day at a time Momma, one day at a time.  That said… today was the last day of Chemo and tomorrow Kiah's body will have a break before his transplant on Friday.  


Up until this point we've spent most of our days playing basketball, watching sesame street on youtube, reading books, and playing on the iPad.  It is hard though to keep a two year old on isolation, hooked up to several lines, in a hospital bed, in a tiny room around the clock. But we manage to find ways to pass the time being silly and laughing with our sweet boy. 

Ps. apologizing again for the scrambled post (if your still reading).

giant transplant calendar.  :P

getting our sillies out…  

the greatest.

Today we wished Daddy a Happy Birthday and though it wasn't much I'm glad we are all together.  You deserve the world, sorry you had to settle for cafeteria carrot cake with pretend candles and the Ativan induced tantrums of our toddler (it just took heavy drugs for our boy to learn how to actually throw a fit).  Happy Birthday to a great Husband and an even greater Daddy, we love you!

yup, there it is…

rocked.

Well day minus eight happened and it rocked my sweet boy hard.  His ATG was started and he spent most of the afternoon/evening crying and whimpering.  ATG is given alongside Chemotherapy in order to suppress certain blood cells.  On a side note, someone really should warn people about the whole hazmet suit deal, it really makes a momma ill.  Back to the infusion… his oxygen levels dropped and he had a high fever. ATG was paused and he started to return to himself watching the NBA finals and phoning to tease Daddy about Miami winning the championship.  Once he had settled they restarted through the night at half of the rate and his fever and oxygen requirements returned.  It was a long night. 

Today was much better (minus seven) he was given meds before hand and handled the reduced rate of the ATG well.  We spent the day cuddling in bed, watching Shrek and talking about life.  He has a lot to say these days, not only to me but he also to his nurses (he told Julie today, "Daddy haircut today and a penis… Kiah penis too").  It was a bit awkward. Later when Daddy came in the evening we make-shifted a basketball net in the hospital bed.  Kiah tangled himself in his lines over and over while showing off his basketball skills for the nurses.  He is particularly proud of his rim-rocker (and his penis too apparently).


as if nothing were happening… 

minus nine.

Just a quick update, a lot has been happening these past few days.  I am tired and Monday was only day minus nine.  As far as transplants go the days before the actual transplant are called the conditioning phase and they are counted backwards leading to zero (zero being the actual transplant date).  I'm really hoping this post doesn't turn into a lesson in transplant 101 (especially given my lack of knowledge on the subject).

During the conditioning phase many drugs are given to prepare the body.  Some of which are prophylactic (the just in case this happens we'll give this ahead of time) drugs. Others are the Chemotherapy drugs (the nurse has to double up her gloves and wear a plastic suit while handling type of drugs).  Kinda makes you wanna vomit thinking that she has to double glove and pretty much wear a hazmat suit while she pumps them into your tiny toddler. Monday was the test dose of the first Chemo drug.  Kiah was miserable all day and had a bit of a fever.

Yesterday he had an elevated temperature but no fever.  The Ativan was making him loopy and his emotional stability was that of a thirteen year old girl but today was much better. He seemed much more himself, playing basketball and keeping us busy.  Due to the initial fever and a few other questionable symptoms he has had they decided to give him a break for a couple days while they run cultures to rule out anything else going on.  If all comes back negative we will continue with day minus eight tomorrow.  Leave it to my boy to get sick right before transplant, as if negative days aren't daunting enough…  Here's hoping for minus eight tomorrow.


having not taken any photos of the tween my toddler turned into… thought I'd post a couple pics from just before we left… ;)

mis much.

all about daddy.

my daddy’s name is: "keon"

my daddy is "teeny tiny two… same kiah"

his favourite colour is: "blue"

my daddy’s job is: *silence

my daddy's favourite song is: "abc's same kiah"

the best thing my daddy cooks is: "popcorn and pizza and bananas"

my daddy looks like: "daddy hair cut and ears and beard" 

i like to "shoot it basketball" with my daddy

my daddy always says: "hi buddy… hi daddy"

my daddy loves me: "mis much"

…and that about sums it all up.  Daddy definitely wishes he were younger, his job is really hard to explain, he often adds weird ingredients to his cooking, his 5 o'clock shadow can sometimes be mistaken for a beard, and he loves Kiah "mis much".  

Happy Father's Day to my amazing husband and the greatest Daddy our sweet boy could ever dream of.  For all of the ways big and small that you take care of our little family, I thank you.  We are so grateful that you belong to us.  <3

kiah's drawing of his daddy… 

he wanted to give his daddy an owl for father's day… (???)

daddy's basketball game and proof daddy isn't the grasshopper kiah drew him to be…