On the Outside

Our house is a very, very, very fine house.

– Graham Nash

We are home. Everything is overwhelming and busy, but I’m slowly starting to be able to handle it. We’ve been home for little more than 48 hours but it already feels like an age.

Discharge Day was not easy. I spent the whole day packing, moving things, running errands and consulting with various people. We finally got the go-ahead to leave at around 3:00, had all of our meds ready, and received our portable oxygen tank. (It comes with a shoulder strap!) I felt like a runner forced to wait in the blocks for 6 hours waiting to hear the starting gun go off. Bubby, Auntie Loz and I wheeled Gavin out in his stroller, bundled up in winter gear for the first time this season and marched triumphantly through the hospital to the car. It took Lauren and I about 15 minutes to get Gavin into his car-seat with his oxygen tank settled on the floor. You’d think we were getting ready for a lunar landing.

We met Bubby at home, and got Gavin settled in his play area. He immediately said, “make a cake” and got up and with shaky steps made his way to the pantry cupboard to get out his ingredients for “baking”. Seeing him like that, in his old position, perusing the contents of the cupboard, was enough to push me over the edge. Tears flowed. Happy ones.

I think I have finally found spots for most of Gavin’s things and the place doesn’t look quite as toy-bomb-went-off as it did on Tuesday. We have been very, very hectic though, with visits from home-care, blood pressures to take, meds to draw up, oxygen drop-offs, and more. Our first full day yesterday knocked me out as I raced around the entire day, with always another little task to complete.

Gavin has been unbelievable since being home. He walks around the house with just a little hand-holding to help him along. Taking steps on his own is still a bit of a challenge. He also wants to try walking up the stairs again, and stands for a half hour or more at a stretch while playing. You must remember that this child did not get out of bed for more than six weeks and has had very limited physical activity for the past six months. He amazes us all. He does get tired though and then wants to sit down or be carried.

Carrying him is finally starting to be an issue, as he seems to have put on a little bit of weight in the last couple of weeks, and has now gone over 13 kg for the first time in six months too. There is a little bit of chub around his face and tummy, but this is also a side-effect of the steroids he is on. It does serve to make him look a bit less frail. He is showing more and more interest in eating, and when I get a free second from my nurse-ly duties, I intend to concoct some more interesting meals. So far the major staples have been cheese, hummus, and bread products. For dinner tonight he ate macaroni and cheese, and carrots. He has not been able to eat a proper vegetable in a very long time, so this was thrilling. I am dreaming that we may be able to get rid of the NG tube sometime in the undistant future.

It is regrettable that he can’t help me with the cooking, as we have a gas stove, and the oxygen must be kept away from it, for obvious reasons. Like everything else, he accepts these limitations that are put on him with such enduring grace. It is so humbling. Apart from these inconveniences he loves being here and having visits from Da and Bubby.

Today the sun made a brief and brilliant appearance, and Bubby and I rugged him up in snowpants (which he thought were hilarious) for some fun in the snow. Unfortunately, I was called away by the washer repair guy and missed most of the fun, but I did manage to get a couple of photos. In hospital we always talked about playing in the snow when Beanie is better, and he was always so excited to see that it was snowing outside. Amazing to see that dream realized. After he walked all around the yard and inspected things, he agreed to go out for a walk in the stroller for the first time since being home. Secretly I hoped he would fall asleep as he always used to, as naptime has been a struggle lately. Less than a block away he looked at me and said, Close eyes and fall asleep now. And he did.

11 responses to “On the Outside”

  1. Ashley

    I was praying for an update like this! It warms my heart!

  2. Erin


    so exciting – you have handled so much in the past 6 plus mounths, this transition from hospital to home, although overwhelming at first (I’m sure) will be such a cakewalk compared to what you have managed so bravely Erica & Craig…nothing but goodness is to come for you all, I just know it!!!


    p.s. hoping for a mums’ night out soon??!!

  3. Mette

    So extremely happy for you all. This really is a dream come true.

  4. Tiffany

    I’m shedding happy tears reading this Erica! You and Craig have endured so much with so much grace its not surprising to hear that Gavin shares that trait. I’m sure the transition is hectic and overwhelming but I still love to just picture you AT HOME and Gavin being so happy to have the comfort and freedom. It is a gift.

  5. Nadia


  6. Phil, Amy Phoebe and Tom

    This is such wonderful and incredibly happy news guys – we are all delighted to hear Gavin is home with you – it must feel just amazing. Great news!

  7. Gail

    Very happy news.

  8. Karen

    What wonderful news! I am so happy for you guys.

  9. Amanda

    pure joy to read this post from you Erica. happy tears. xo

  10. mandell

    Dear Erica,
    My name is Brian Mandell and my wife and I have been following Gavin’s story for some time. Before I talk about us, I just wanted to let you know how amazingly strong and cute Gavin is! Unfortunately, his story is one we know well because our daughter Emily was also diagnosed with an ATRT in March of 2008. We decided to get her treated at the Dana Farber Cancer Institute in Boston and found the level of care unbelievable. We became very close to some of the nurses, doctors, and other families who’s loved ones were going through treatment.

    We went through dozens of chemo cycles, some radiation, and MRI’s…unfortunately the tumor became unmanageable and Emily lost her courageous battle in March of 2009. She was such an amazing little girl who inspired so many and one of the ways we have been “giving back” is by providing warm blankets to those kids still in treatment. We are also selling others and giving a certain percentage of each sale to the “Cure ATRT Now Fund.” Basically we are trying to raise awareness for ATRT’s and connect families still in treatment. In short, we would like to give Gavin a blanket, to provide a little warmth during the tough times. If you would like to respond with your address we can send it out this week, if not that is completely understandable since we know how stressful things can get and the need for privacy. My email address is brianmandell@hotmail.com if you would like to follow up. Thanks again for all you do for Gavin and we wish your family nothing but the best.
    Take care,
    Brian Mandell

  11. Michael N

    It’s very exciting to aee that you are home after so long. Congratulations. Keep having happy tears.

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