I’ve had a lot of people say to me lately, “You’re so strong, you are doing such an amazing job.” The truth is that I don’t feel strong in the slightest. The true strength around here is coming from my son and my husband, while all I feel like I’m doing lately is throwing temper tantrums and sobbing inappropriately all around the hospital.

To give myself due credit, I’ve done the best I can in these very difficult circumstances, but my natural pessimism keeps swinging my
moods around radically. It’s then that I need my husband to pull me
back on track. I guess, like anyone, when I receive new information, I need time to process it and accept it. Yesterday, I finally had a
visit from neurosurgery to discuss Gavin’s shunt status. It has been three months but we never really got a debriefing from them. I read
through the hydrocephalus handbook today, and some of the facts
were very difficult to hear. There is no guarantee that any or all of
these things will happen to Gavin, but everything I read, I instantly
think, oh God, that’s what’s going to happen to him. I wish I could
just believe in a positive outcome as purely as Craig does. And
accept that there will be side effects down the road that I did not
anticipate or desire.

Today was another pretty long day, but not bad at all, in fact it was quite good. Had a bit of a long night cause I got up with the nurse several times to change bean’s sheets and diapers. In no way was it as long as many of the nights we’ve had here, and Gavin slept
through everything. I woke this morning to find that the coffee fairy
had been and left a muffin too! Gavin and I got up and dressed and
straight onto play action. By the time my mum arrived at around
10, we had already read books, listened to tunes, drawn on the
windows, played with all our toys and made a few batches of
cupcakes on the iPad.

There are a few things both Craig and I need to get used to about this life. We both have to remember to be completely vigilant about keeping Gavin isolated well and free from contaminants. It’s hard to remember to always wash your hands after touching your face, so
I’ve just been washing my hands constantly, whenever the thought
crosses my mind. All clothes should be worn only once, and we can’t wear our outdoor shoes in here. Everything that comes in here must
be wiped down, and once anything hits the floor, it’s out. Gavin dropped Minnow on the floor today, so he was out, as well as
Monkey because he got peed on in the night. Sigh.

My mom played with Gav for awhile while I went to get coffee and figure out if I could get the two Ms washed. I discovered the
parents’ laundry room, and its one washer for the whole hospital!
Obviously, it was already in use. I went back upstairs and began the
long and painful process of getting the little munchkin to go to sleep, while my mum went to the condo to do laundry. Gav eventually
went to sleep for a good two hours, and went down pretty easily
tonight too.

The really good news is that he didn’t throw up at all today, and tolerated all of his formula feeds. He didn’t eat anything but that’s considered normal around here! They are just glad if the formula
stays down. Unfortunately, everyone expects it to get far worse than
this, so they think we may have to resort to TPN quite soon. I have
accepted that and know that he will eat again one day, it will just
take time to come to pass.

So despite everything, the Gavinator is in a great mood, and was very playful today, singing songs and enjoying his playtime with Bubby. Everyone is commenting on how good he looks, which is
nice. Fingers crossed that this continues. So far, he hasn’t asked us
about home. I explained to him today that we have to stay here a
little while, until he is all better, but when we go home we are going
to do so many fun things together and will go to the cottage and
the park. He just nodded and smiled. I don’t know how but
somehow this child has been blessed with the grace to accept what
is happening to him without fear and without reproach.

In many ways I am thankful that he doesn’t truly grasp what’s happening to him. He does not feel depressed about having cancer, he just knows that sometimes he feels sick and vomits. As long as
we are all here to keep him stimulated, he will do fine, and I hope
will not remember any of the bad times. I spoke to one patient’s
grandmother today, who told me that her granddaughter is suffering
a lot psychologically, because she is 8, so therefore knows what’s
happening, and feels so terrible about missing school and her friends, and losing her hair.

Our little next door neighbor is going to celebrate her first birthday
this weekend, and the nurses did a little celebration for her, with a
cake and balloons. She does not have cancer but a very rare
disorder of the immune system, as many of the children do here,
and has undergone chemotherapy and a stem cell transplant in order to replace her bone marrow. She received stem cells from a matching cord blood donor overseas, in a country where they bank
donor cord blood. (I don’t believe there are any donor banks in Canada, just personal ones and quite expensive) Recently, a few people have asked me if they should bank their baby’s cord blood. I
do not know very much about the process but now I would say, yes, definitely! Even if it isn’t used for that particular child, it potentially could be a life-saver for other members of the family too! You never
think these things will happen to you, until it happens.

I have a favour to ask. Gavin would LOVE, I’m sure, to get a few items in the post from time to time. The address here is:
Gavin Pardey
Unit 8B
The Hospital for Sick Children
555 University Avenue
Toronto, Ontario
M5G 1X8

A card, note or drawing would make his day!

2 responses to “Strength”

  1. Lisa Conroy

    Thanks Erica for your address I have been meaning to get it as I have something for Gavin. Jasmine has just started crawling this week and for the first time knocked her head and has great big egg on her head, I of course burst into tears. I then logged on and read your latest blogs and I feel so silly, you and Craig are such inspirations, if we can be half the parents you are, Jassie will be a lucky a girl. Lots of Love Lisa xx

  2. Mette

    Just wanted to say hello. I am another ATRT mom and have been following Gavin’s story. I think he is on the same protocol as my daughter was (COG 99703). If you have any questions, please feel free to contact me. It’s a rough, rough protocol, but you’ll all get through it. What you’re going through sounds normal (for this kind of process, that is. It’s not at all normal compared to general life, of course.) Hang in there, and you have the support of other ATRT families.

Leave a Reply