I’m way over due for an update, but it’s crazy how busy life gets when it’s back to somewhat normal routine. Before I would be almost annoyed when people say “I don’t know how you do all this”, because for me it was normal and now every time Facebook reminds me what happened on today’s date last year, I look at pictures almost in disbelieve that we made it thru..
Most importantly Nela is doing really good. At times I feel like I don’t want to say it too many times to jinx it. Of course there are still times when I hold my breath in while I try to convince my brain that she is sleeping longer simply because she is tired and it’s not a sign of a relapse, that her runny nose is a cold she picked up in school and cough is because of the this and not cancer taking over her lungs..
There are times when I can look at Dario and know exactly what he is thinking as Nela says her head hurts, but both of us are almost afraid to say it because then somehow it seems more real…
The further we move away from treatment it gets scarier in a way. It could be because you do get more use to this new normal and just a thought of having to relive any of the treatment seems unbearable. And for me it’s always the reality of how difficult it may be to even try and find another way to fight the disease since childhood cancer is so underfunded and under researched it’s not like we have 10s of options for relapses and progressions…
We are still very involved with many after treatment follow ups. Nela has had pretty harsh treatment which left a mark on her body that with time we are trying to adjust. She has developed cataract so we are in process of scheduling a surgery to correct this. Also last scans showed a potential of blood cloths so we are doing a careful follow up on this as well.
And then scans, time has come again for scans. We are planning to do them towards the end of the month, and as always anxiety over this is just pure torture.
This time last year we were finishing last cycle of chemo and I still can’t grasp that year has passed. A year ago we were stuck in hospital with such a thirst for treatment to be over, but also fear of leaving behind a safe place…
Today I’m so thankful we get to go back and visit what we called home for weeks, and months. I was nervous about how would Nela would react walking back onto the oncology floor but she was very excited to run around, give hugs to her favorite nurses, visit the playroom and help serve dinner we brought in for the entire oncology floor. Her amazing spirit was contagious during our visit and gave hope to many of the families. We met hand full of families who are just starting this journey and are in stage of not even grasping on what all this means.. It’s heartbreaking to know someone else is about to walk the scary unknown path you hate soo much and there is not much you can do to change it… I just wanted to hug them and not let go.
Also the nurses of the oncology floor are pure gold and have been amazing to our family, and seeing their excitement about Nela is priceless.
My hope for this year is to continue this kind of visitations to hospital, I beg for this year to be treatment free since last 3 years were consumed by it. Health is truly the biggest fortune we have and I cherish this more than anything.
Be useful, be kind