TWO years post-transplant! I have been saying this quietly to myself for the last month, I feel like if I say it out loud I will wake up in the beginning of it all. When it felt like there was no light, when I couldn’t breathe because it hurt, or couldn’t eat because I was so sick with worry, or when I walked around for the 5 months before transplant like a zombie, or not blinking for fear the tears would start and never stop or, or, or, or……..I could go on, but I won’t. Those feelings still come and visit every now and then, not as heavy and not as often, but they are there. I think I am ok with that, it keeps me in check, and reminds that things could and probably will change for Nadia’s health, down the road. My mom always said to me and my siblings growing up ‘accentuate the positive’ and I have always tried to live my life like that. When I start to go down that path of despair with all of the ‘what ifs’ that Nadia MAY endure, I can hear my mom saying that in her shrill Irish accent. I should really record her saying that and get it put into a one of those teddy’s and press it when I need to. HA!
Nadia has been doing so well. I think our last blog post was in May, eeeep sorry! It just means things have been going really well is all. 😉 We had a great summer, fall and Christmas. We had a bunch of follow-up appointments with Hematology at the beginning of December. They were VERY happy with her progress. Our hematologist actually got confused and thought she was much further along post-transplant and was wondering why her Mumps protection was non-existent. Thor had to remind him Nadia isn’t due her MMR (mumps, measles and rubella) re-vaccinations until fall 2016. Did I mention how much I love this doctor? You never feel overwhelmed when he talks to you, and he is so calm, that it just forces you to feel calm as well. So when he said that about her Mumps protection, I had this feeling of calm, not annoyance because he got confused, and just happy that he thought she was further along than she was.
Nadia also forced him during our appointment, and the rest of team BMT to play bouncy ball in the examination room. They all obliged and it was super cute. The best part of the appointment was that they said we wouldn’t need to see them again until December 2016, they didn’t feel the need to make us come back in February just because it was transplantiversary! Whoohoo!
We had an appointment with respirology, and Nadia happened to have a cold and with every cold Nadia gets since transplant her cough gets VERY barky. So when this happens, my over-thinking mommy brain goes straight to thinking it is Pulmonary Fibrosis (PF). Our respirologist, sent Nadia for x-rays, we didn’t have any lung x-rays post-transplant. So we needed to get a baseline for Nadia anyway. Thankfully her lungs were clear, showing no signs of PF. Unfortunately the only way to truly test for PF is a pulmonary function test, and Nadia needs to be a few years older for that one as it involves blowing into a machine for as long as she can and a bunch of other things. Our respirologist explained to us a lot of kids post-transplant get barky coughs as their lungs are very fragile (pronounced the Italian way – just kidding) due to the chemo. So we got to leave with a parting gift of an inhaler. It has definitely helped her. She gets it 2 times a day and it has made a world of difference for her coughs. Her coughs seem to clear up quicker and don’t sound so barky. Nadia was quite busy in his office as he tried to listen to her lungs, she was all over the place. He looked up and said, ‘does she ever stop moving?’ we responded, ‘when she had a hemoglobin of 70 she didn’t stop moving.’ : P
This trip we were able to give a few of Nadia’s specialists a copy of the DC clinical guidelines. These were just published in late 2015 and our outreach group did an AMAZING job with them. All of her specialists were VERY happy to see them, some of them even excited about them. It is such a crazy disease that affects each patient differently, so these guidelines are great for doctors to refer to. When we gave them copies, we included 2 Starbucks cards and a note asking them to have a coffee on us and take a moment to have a looky-loo, then pass the book to a student or colleague so they can have a look as well. As we have said before this disease can present with so many different things that the only way to really diagnose it is by genetic testing. So we feel if we can get it on a doctor’s radar, maybe if one of their patients presents with some symptoms, they will connect it with the disease. Historically DC patients have been sent down the wrong care-path with the wrong, or no, diagnosis, and the results can be devastating.
Nadia started pre-school in January and is loving it. She is still being followed by child life development for speech and occupational therapy, and the coordinator got to observe her on her 2nd day of preschool, and she phoned me that afternoon VERY excited. Saying she couldn’t wait to phone me, Nadia did great, and how overjoyed she felt when she watched Nadia in the class room (insert mommies ugly cry here). She told me that it was like Nadia had been there since September, she got right into playing with the kids, didn’t have any issues asking for anything. She said it was a joy to watch her. Of course this made me feel relieved and happy, Nadia has always just wanted to be with her peers, and her isolation for 1.5 years had me feeling like she missed out, plus her speech is still delayed, so I was worried about how the kids would react to her. She seems to be doing fine, though, so I can get rid of that worry. I think when you are a parent, you don’t want your kid to have any struggles, just breeze through life and fit in. So when I hear things like that, it makes me feel so relieved and happy (is someone cutting onions?). We know Nadia’s life has not been a breeze, it has been a battle from the moment she was born and will continue to be one, but man does she make the battle look sooooooo easy.
On my Facebook page the other day, a memory came up from 2 yrs ago. It was from February 12, 2014, the night before Nadia was to be admitted and start her chemo regime. I have a love/hate relationship with these memories, but it is great for looking back and seeing what I had posted during Nadia’s transplant time. This is part of what it said:
‘The only way I can describe what I am feeling is like what you feel the night before your first day of school or a new job. Anxiety, excitement, happy, sad, nervous, and the list goes on, your mind is racing and all you want is to look back on this moment and say, ‘why did I get my knickers in a twist? This isn’t so bad’ We know the road ahead is a long one, and one not to be rushed as much as we want to skip forward.’
I clearly remember feeling like this feeling would never go away and that there was no light at the end of the tunnel, we were in the dark and it was suffocating! Sure if Nadia made it through transplant, she still faced possible complications from the transplant AND definitely more complications from the disease. It was a feeling I couldn’t get passed. I think when you are faced with a complication in your life (and I don’t mean just dealing with a disease), weather it just involves you, a family member or your kid, it is all-consuming. It jolts you out of how you think your life was going to go, you know that ‘easy road life’ you want for everyone in your life, where your biggest worry is that you carried a balance on your Visa bill. Then something like this happens, and no matter how hard you try to look at the positives in your life, sometimes you just can’t, sometimes the ‘things could be worse’ statement, is not comforting at all, in fact it’s annoying. Because in that moment, no matter what the situation is, this IS the ‘things could be worse’ situation, and you have become that family or person that is used as the example. I think that it is OK to feel like that, to feel that ‘boohoo why me’, it is part of how to heal yourself and you need to grieve the ‘easy road life’ you had pictured in your mind. Because that ‘easy road life’ has just shattered before you and you have NO idea how to put it back together, where to start, you are lost and when you realize that there is no point in putting the pieces back together to try and get back to that ‘easy road life’, you learn with time to accept that now you have to take a different road. Now looking back at that post, I can definitely see the light at the end of the tunnel, in fact we are shining in the light, bathing in it actually, with SPF 60 of course ;).
We are celebrating today with cake! Cake for breakfast, lunch, and supper! LET HER EAT CAKE!!