Update #2 – (warning long post)
And then there were two….
Simon touched down in Perth this afternoon so Jackson and I are flying solo for a few weeks. Simon leaving to go home was harder for me than I thought, it was so good being able to find our way around together, to meet with the doctors and have his help getting us set up in the new apartment. He even went and spoke to the local barrister we have been to, to make sure he knew how i liked my coffee. We will miss him.
We have been very lucky to meet a lovely family who have been helping us to find our way. I feel so much comfort in knowing that there is someone close by that I can call if I ever get stuck. They have had us over for meals, driven us to get groceries, shown us the sites – they’ve gone above and beyond to make us feel welcome. We are so grateful for your help Laura Silvio and family.
With Simon’s departure, the realisation of what we are about to do really set in for me. I think I mentioned before, we spent so many months fighting to get access to this treatment and waiting for the green light to come over here, we never actually let our minds think about actually putting him through it.
It’s all feeling very real at the moment which is both wonderful and heartbreaking at the same time. Having seen Kenzie go through similar conditioning treatments (chemotherapy) in Perth, I know how sick Jackson needs to get before he has a chance at getting better. BUT, I know he can do this. I definitely have a good, positive feeling about it and so far it is all playing out in reality just as I had planned in my mind (if that makes sense). I take great comfort in that. I still feel so, so blessed to be here. A fellow MLD mumma and ally, Maria (from the Calliope Joy foundation) said to me ‘miracles take a lot of hard work’. This is so true and we are prepared to do what ever it takes.
Since our last update Jackson has been back and forth to the hospital for more tests and assessments. We haven’t got any formal results back yet but from me reading the daily discharge paperwork with a fine tooth comb, I can’t see any obvious problems or issues. I’ve asked the doctors and nurses for a schedule of appointments (you probably all know how I love to plan) so hopefully I’ll have more concrete dates for isolation in coming days. I do know that we are booked in for a one-week hospital stay on September 9 for the harvesting of Jackson’s stem cells. I think from that point on things will happen quite quickly.
Jackson is pretty bright and clued in very quickly that nurses and doctors will come to say hello to him before doing something unpleasant (like bloodwork – there is so much blood drawn each visit!). He will be smiling and playing, and as soon as he sees them walk in he shoots me a look of panic and begins to cry. This is very difficult as that look is saying ‘please, please get me out of here’, and I can’t. I have to help hold him down and comfort him as best I can. I hate the feeling of helplessness you feel at that moment, but thankfully, the nurses and doctors are gentle with us both.
I have discovered that Jackson LOVES Thomas the Tank Engine. Particularly, the theme song. It has been played over and over and over when ever we need to settle him at appointments and it seems to work. He will actually watch an episode if you sit there with him, it seems to hold his attention. I am glad I discovered this before isolation begins, I think Thomas and his Friends will come in handy!
Ashlee has finally recovered from the flu that really made her quite unwell for a number of weeks. But now Kenzie has it! She went to PMH today as a precaution for tests because we know she is vulnerable to infection being only 7months post transplant and things can turn very quickly. I’m happy to report that her bloodwork was exceptional – in fact the Doctors told mum that if you purely looked at her bloodwork, you would not know she had a transplant 7 months ago. This is wonderful news. They have put her on short course of antibiotics and ordered her to take it easy for a few days, but are not concerned. It’s so, so so hard to be away from the girls when they are not well but I know I’ve left them in great hands with their Nanna Dianne,Charli and Ben and in a few hours Daddy will be able to give them a cuddle which I know will help.
These girls need to get healthy as they are going to EURO DISNEY, in Paris before they settle in Milan. My mum and my sister are taking them on a mini-adventure, because let’s face it, they deserve it. A dinner party with all the princesses has been booked, passes have been sorted and accommodation/flights are confirmed . I am so happy that they can experience this and I am beyond thrilled that Kenzie is mobile enough at the moment to be able to really enjoy it. I'm very grateful to mum and charli for making this happen!
Jackson and I have a quiet few days ahead of us because at this stage we aren’t needed at hospital until Monday morning. Being in the bigger accommodation is great as I can cook fresh meals, do laundry and Jackson has a large space to play. I definitely enjoy doing ‘normal’ things more than I ever could have imagined.
So, all in all, we’re doing well and are eager to get moving with the treatment.
Afew people have asked for our address. We are staying at:
NH Milano 2 Residence - Daff Family (Samantha). Room 729. Via Fratelli Cervi, 20090, Segrate MI, Italy Phone: +39 02 21281
My Italian number is +39 331 2725309
Thank you for keeping us in your thoughts xxx