Day +177: Anniversaries, new normals and temper tantrums

Well it has been a year since we were told by our Pediatrician to pack up and immediately drive to BC Children’s hospital 4 hours away. The only thing I remember him saying was “there are no abnormal cells in her CBC smear.” And after Thor asking him “how many days do we pack for?” He answered “I’d pack for a week”. As we rushed back home, to pack up for ‘5 days’, not knowing what was a head of us, I remember repeating in my head the words of our doctor ‘there are no abnormal cells in her CBC smear’ and it wasn’t until I phoned my manager at work to tell her I wasn’t coming in and didn’t know when I would return, that I really broke down. And broke down in such a way that I don’t remember what I said to her, I was hyperventilating, like when a kid cries so hard he can only say one word at a time between big sobs and gasps. All I remember her saying to me was ‘Go, just go!’, she didn’t ask me to explain, or question me, something I am very grateful for. I knew after that phone call I wouldn’t be able to talk with anyone else, so I just texted everyone in our family. We drove for what felt like an eternity. My mind racing, but in the background echoing what the pediatrician said ‘no abnormal cells’. Little did we know, even though it wasn’t cancer, it would be just as horrible. We arrived at BC Children’s Hopsital at 8pm and, well the rest as they say is somewhat history, or at least you can go back in the blog and read about it! HA!

I have never liked to mark anniversaries like this, but seeing as how it lines up with Nadia’s 6 month post transplant mark, I felt like I needed to reflect. After being through, and going through, something like this, it has been tramatic to say the least. I have gone from a person that I like to think of as calm and rational, to someone who is filled with anxiety and is irrational. My mind is constantly running a mile a minute with all the things that could have gone wrong to things that can go wrong still. Don’t get me wrong, I am not so consumed with the ‘what ifs’ that I can’t function or paralyzed with fear. Because this time last year, I was pretty much that person. I was hardly eating, and barely sleeping. Thor would have to read me to sleep. (Great advantage of having a scientist as a hubby, as he can read some real boring stuff before bed.) I would wake up in the middle of the night and not be able to go back to sleep. I would start crying multiple times a day and couldn’t stop. People say “I don’t know how you are handling this, I know I wouldn’t be able to do it”. The thing is, for any person that is going through something like we have and are going through, you do get through it and ANYONE would be able to do it, because at the end of the day, you have no choice, especially when your child is involved. You have to just put one foot in front of the other and get on with it. Your kid depends on you as much as you want to curl up under a rock and never come out, your kid needs you and as a parent, that is what gets you through it. It’s what has gotten me through it. You can’t have a pity party every day, but you are allowed to have them. 🙂

So enough of the emotional stuff. I realized we never updated our blog from our last appointment we had a BCCH at the end of July, which obviously means it went well. I am sure you can surmise that all went well. We met with Endocronology for a post transplant appointment, they make sure Nadia’s hormones are all in check and she is growing properly. I am happy to report Nadia went from 10th percentile in height pre-BMT to 40th percentile post-BMT. HORRAY! I stopped paying attention to the percentile chart for Nadia a long time ago before her diagnosis, because I would get so upset about it. Nadia was a premature and was very low birth weight when she was born, just under 3lbs, so her growing was a big stress on me for a long time. Of course now we know that this was probably due to her genetic disease, she came out a fighter and she is still kicking some serious a$$. I always sing the song of Thumbelina to myself when we measure her, ‘cause when your heart is full of love, your 9 ft tall’ sing it Hans Christian Andersen!

We then had our hematology appointment with our lovely BMT nurse. Our Hemo docs were on vacation, so we didn’t see them, but who needs them anyways? All of Nadia’s numbers were in the normal range! Whoop whoop! Nadia was allowed to come off her magnesium supplement and our nurse wanted to confirm with the doctors when they came back about taking her off the anti-biotic Septra. Nadia Has been on this anti-biotic for 6 months. Although she wasn’t sick with anything, this was preventative measure to help ward off chest infections and evil dooers. 😉 So we got word last week Nadia was allowed to stop taking it. She only took it twice a week, but this meant the end of her post BMT drug regime. WHOOP! WHOOP! I want to emphasis AGAIN, that we have been VERY lucky that Nadia has only needed the bare minimum of post transplant drugs. A lot of families I have been in contact with and blogs I have read, the BMT patients are still on a lot of drugs even 2 yrs post transplant. I can’t help but feel guilty and live in constant fear that the shoe is going to drop (see mind constantly racing above). We are thankful EVERY day and send out good vibes to all of the cyber transplant families we know, that they too will be off their drugs soon as well. So if you could also send out some cyber vibes to our fellow transplant families we would appreciate it and I know they would too.

We are due back at BCCH at the end of August, this time we will only being meeting with Hematology.

I am returning back to work at the beginning of September. I will be going back part time and we hired a Nanny for the days I am at work. Although Nadia’s numbers are high enough to return to day care, it was recommended if we can, to get a nanny and sign her up for activities. So that is what we have done. Nadia will be doing gymnastics, music and dance in the fall. I think she will kill at gymnastics. Dance and music, I don’t think she has the attention span for it, but at least she will be socializing. I am excited to return back to work. I feel like me returning back to work will give us, or maybe just me, a better sense of normal and perhaps make me a little more sane. I love my job and the people I work with, and I know I need the structure of work in my life and mind to be a better parent for Nadia. As long as Nadia’s health continues the way it has been going I think going back to work part time will be the right balance for me.

Nadia is doing really well, and being a normal 2.5 yr old. Temper tantrums with crying and kicking and screaming the whole bit. It is frustrating at the time, but hilliarious when I think about it. She does it with such passion and feeling I think she should be nominated for an academy award. She is tormenting the dog, and has become quite the monkey. She scaled the chain link fence the other day in 6 seconds flat. I turned around to pick up the ball for the dog to throw it, the next thing, she is at the top of the fence ready to climb over the other side. Oh – and she climbed into the crib (vid below). The day soon will be upon us that she will be able to escape in the morning … Or perhaps she is planning her first heist, this kid’s mind is always thinking.

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