Happy New Year Update - bring on 2024!!
Again, lots has happened since the last blog update. I'll try to do an overview of the timeline, but this may jump around a bit as the thoughts come out of my head.
Emma had another admission (14-24 Nov) at SickKids when her appetite took a sharp nose dive down to nothing. They put her back on TPN (IV nutrition) and put another NG tube in to get her digestive system back in working order, starting with small amounts of NG feeds and working up. That was a hard few weeks as her mood and energy were very low until the nutrition kicked in. Luckily that was all that cropped up. Emma's transplant physician at SickKids, Dr. Krueger, then discharged us back to London in early December. Chris and Alex came up on a Wednesday and we had some nice time as a family at the Ronald McDonald apartment before moving home on the Saturday. Boy did we accumulate a lot of stuff in that apartment!!
We had a beautiful welcome home from the neighbourhood families the day that we drove in. We were so thankful to be home and together for Christmas - that was extra special this year given all that we have been through. We tried to make it as 'normal' as possible, within the restrictions - went over to my parents house (with everyone being extra careful in the week leading up to the gathering - masking and limiting contacts - to ensure that all were well on the day) and had a lovely sit down Christmas dinner.
Emma has been doing well since the nutrition piece got sorted. The NG tube did get vomited out about 2 weeks ago, but she is now at a point where she is eating well, so our oncologist here in London (Dr. Seelisch) decided to leave it out, give her a chance and see how it goes. Emma's taste buds have been affected by the chemo/radiation and things taste different, which makes it difficult - old favorites don't taste the same and some new things are too much or too spicy etc... but she is making her way.
Being at home together after 3 months apart has mostly been wonderful, but also challenging as we all get used to a new routine and being in each other's space. After the first couple weeks of 'honeymoon' that we were all just so thankful and amazed to be back together, we have fallen back into old habits - siblings and parents bickering and being in each other's pockets, so to speak. But it has a certain sweetness to it, even as it's happening.
Things around the house have to be kept clean and tidy, so lots of laundry loads and antiseptic wipes and hand sanitizing. Food preparation and kitchen cleanliness is important as well. Emma's immune system, while it's getting stronger, is still very fragile and we have to be very careful of germs/bacteria. She has to stay relatively isolated from other people and she will remain on a 'low bacteria' diet until 6 months post-transplant. The worry of Alex bringing germs home from school prompted us to keep him out of school for 3 weeks leading up to the winter break and a few days in the first week back to school in January. Getting Emma to and through Day +100 (28 Dec) without any major complications or infections was a big milestone and we celebrated by taking a little trip to the beach at Port Stanley. A bit of December rain didn't dampen the outing!
The next milestone is a big one - Day +180 or roughly 6 months post-transplant (mid-March 2024). Emma will be able to go back to school and start to do social things that she is very much looking forward to. Until then, we can do outdoor/distanced visits, which is a bit of a challenge given that it's the middle of winter. She has been liking walking to school in the mornings and seeing kids on the playground, waving to friends from a distance. Baby steps for both of us - going from a tiny isolation room and moving through the gradients to where we currently are, has been big. I wrestle with anxiety around every little step towards 'normal', worrying about infectious exposure and my mind going always to the worst possible scenario. As always - and I write this almost every time - I come back to what is true right now. Emma is doing very well. Dr. Seelisch is happy, blood counts are good, we have been doing a good job balancing the relatively new/exciting things with the more safe confines of the house.
That's it for now - we'll hunker down for these 9 weeks until we hit that 6 month mark. I've decided to leave the Christmas tree up and we'll decorate it for Valentine's day, keeping a bit of a festive feel - these months are hard at the best of times, even moreso when we've felt cooped up for so long already. Emma will start 1:1 tutoring here at home to try and get her caught up with schooling and we'll try to have some fun activities and outings on tap when she feels up to it - Dr. Seelisch even said Emma can go skiing and tobogganing (with a helmet obviously) if she feels she has the energy for it! So we'll wait and see if she's up to it and be ready to go when she says so!
As always - thank you for your thoughts and well wishes. This is truly a marathon and we appreciate those that continue to support us and send thoughts and prayers. We are very lucky and thankful for all of you! 💕
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