Dear friends,
The last days have been quite hectic and stressful. The whole country is now undertaking measures we've been following for the last 7 months. Social distancing, keeping hands always clean, buying lots of hand sanitiser, ho, and becoming scared everytime someone looks unwell close by... That is our routine. It does take a while to adapt and to be honest, we still learn as this is again not how we imagined or would naturally do. But we are doing it to keep our little one safe, with love and perseverance, every single day since he was born. I know there have been many discussions regarding the new rules governing our society, I know many of our European friends did not understand first, but please remember, we better be safe than regret forever. We are so glad friends, colleagues, leaders are taking wise decisions to protect themselves, and therefore others while they can.
We still have to go to the hospital almost every day for treatments that cannot be interrupted. Every step outside the door is stressful. But surprisingly, lately, we don't struggle much anymore with the adorable elderly we cross by the streets, wanting to hug Nikita - which somehow it's hard to blame as he's really so adorable. But still, please know that for parents of a sick child it adds worries everytime someone gets too close, or touches him. And again, I don't think I ever thought of that before everything happened - so there's no one to blame, it's all about learning and sharing.
Nikita has been quite well in the last two weeks, some ups and down, we needed some transfusions and he's been vomiting quite often - again this is expected with the treatment is undergoing.
He still smiles everytime he can. We noticed everytime we sing or dance for him, he can't stop laughing, and that laugh... makes you dance for hours! So yes, he's keeping our spirits up, and our bodies, so exhausted! :D
We officially finished the cycle with the last drug given yesterday (a 6-hour infusion). Now we expect his blood counts to drop and we need to wait that his bone marrow recovers before we do a biopsy. Hopefully next week, so we'll be able to discuss the next step. As mentioned to many of you, it is unlikely we'll go to transplant before another cycle that can last two to three months. We'll keep you informed as always.
Ronald McDonald House -where we are staying at the moment- has been very supportive, and the community's food donation has allowed us to limit our ways out for shopping. They have taken very strict measures recently to stop spreading the virus and to protect the children. The team has been fantastic really, we can't thank them enough. Thanks so much to our friend who sent meals to us, it really was so heartwarming and of great help.
We feel very lucky that we can smile and be grateful everyday while we're fighting this 'endless felt' battle.
Thank you, thank you, thank you. For all your lovely messages, prayers, and positive thoughts.
Take care.
With love,
Nacho & Nina & Nikita.