9 platelet transfusions, 13 red blood cell transfusions, 50 mls of cord blood has given us, 4 years= 1,460 days =35,040 hours =2,102,400 minutes =126, 144,000 seconds = 147,168,000 heartbeats more with Nadia #thankyoudonors
Take those numbers in, breathe them in, try and comprehend that. That is how much time more we have been given because of some mommy decided to donate her baby’s cord blood to save Nadia’s life. We are reminded everyday how lucky we are of this, but when you break it down like that, it brings me to an emotional mess. It reminds me of how close we were to not having this time with Nadia. It is obviously something we don’t dwell on, but keep close to our heart because we know of so many that have not been this lucky.
We didn’t post an update last year, I had one written and ready to go, I just remember reading and thinking man this is long and does anyone even really care? So we didn’t post one, however I remembered when Nadia was first diagnosed in 2013 I was desperately searching for blogs with updates on their children post transplant and with this disease to see how they were doing, and a lot of them kinda trailed off after year 2. And that is fine, life gets busy with life, and trying to be as normal as you can with all that has happened. Plus it is overwhelming sharing information like this. I felt that I should keep posting as depressing and anxiety inducing as this disease is, I feel it’s important to share what is going on in our life with Nadia, as I know it will give a lot of newly diagnosed families a little bit of hope when grasping to find a ray of sunshine during the darkest times of their life.
Nadia has been doing really well these past 4 yrs post transplant (I honestly can’t believe it has been 4 GLORIOUS YEARS). Health wise (touchwood) she has been the poster child for a successful non-related cord blood transplant. We thank the universe for this every single day. EVERY-SINGLE-DAY!!!
Nadia goes to BC Children’s hospital once a year to see a slew of specialists. We noted last year that she started showing some reticulated skin pigmentation (makes her skin around her neck look lacy). There is nothing that can be done for it, but important to be notated in her chart as this is a common feature of DC however not all DCers get this. Nadia had a scope with ENT, the doctor was amazing and just so nice, they sprayed some ‘fairy dust’ AKA numbing spray down Nadia’s nose, and then stuck a scope with a camera on it down her nose and into her throat and we watched it on the big screen. (pass the popcorn, said no one EVER). The ENT doctor was looking for Leukoplakia, which is a pre-cancerous lesions that DCers may suffer from. It usually manifests on the tongue, or cheeks, but can show up in the area between the nose and throat, hence the scope down there. (even typing this gives me the heebee geebees and sets off my gag reflex) Nadia did really well, she didn’t freak out, she wasn’t “let’s do this, it sounds like so much fun” she let out a little eek then just took it like a champ. Honestly, when I think about what she puts up with and doesn’t freak out about she deserves a gold medal for it.
We met with Hematology and it was a great visit (I will call it a visit because it didn’t feel like an appointment at all). Our hematologist was pleased with all of her results, we chatted, and really just visited. Then he hit us with a bombshell – the was retiring, I nearly burst into sobs right there and then. All I can say is that he was and is an amazing doctor and more importantly an amazing person. He said in our meeting, I never went into medicine to have my name on papers or to be the head of this or that. I really just wanted to get to know my patients and be a good doctor. I wish more doctors were like this because he really was a great doctor. It is so special to have a doctor that listens, and more importantly will seek out opinions of other doctors if needed. In the world of rare disease, this is most important. Time and time again I see stories of families where their doctors just give up or think they know it all and meet your questions or hypothesis about ailments with a brick wall. Our hematologist was faced with 2 options for Nadia’s transplant, radiation or no radiation. He reached out to the 2 leading doctors for DC and took their advice and we are soooooo grateful for this.
Nadia became a big sister on August 3, 2017 to her little brother Magnus. She is in LOVE with him. She isn’t jealous, nor resentful, just full of love for him and it is beautiful to watch. I was the youngest of 4 kids so I have no concept of being selfless. So it amazes me to see her like this. HAHA! Magnus we can safely say is DC free. We had early genetic testing for chorionic villus sampling (CVS), which involved 2 trips to Vancouver, very full bladders, and me pretty much peeing my pants. But that’s a story for another time. We knew the chances of having another baby with DC was less than 5 percent but we wanted to be sure. My pregnancy this time around was completely different and it was a bit stressful as Nadia was born 6 weeks early, so naturally I had that scenario running through my head for the last trimester. So we had a few extra ultrasounds, I was sent for non-stress tests, and a visit to the high-risk clinic in Vancouver (trip 3) to make sure all was going well. Thankfully Magnus was born without a hiccup. He is a lovely baby that adores his big sister. There was a time after Nadia’s diagnosis and post transplant life that I thought ‘Nope not having another kid, I just want to focus on Nadia’. But I can see now that we as a family would have been missing out on sooo much, especially Nadia. She makes such a good big sister and Magnus is a lucky baby brother.
We lost our beloved dog Einstein just before Christmas, and it sent me into a bit of a tailspin. If you know me, I am a dog person. I love all dogs, like LOVE them. In fact before we got Einstein I would force Thor to take a walk with me through the big dog park by our house in Calgary just so I could see the dogs and pet them. Then I started to think that someone is gonna think it’s weird we are coming to a dog park with out a dog. HAHA. So Thor caved and we got Einstein. I think the reason it hit me so hard, is because Einstein was there from day one with us with Nadia, from her prematurity to her diagnosis. He was there with his waggy tail, wet nose and sloppy kisses, to just BE THERE. I haven’t had someone (and yes he was a someone to us) that close to me pass away, and it was hard. It brought up a lot of emotions about Nadia and how close we were to losing her. Upon Nadia’s initial diagnosis, when I was at home alone with Nadia, not being able to leave the house because of her weakened immune system, it was just me, Nadia and Einstein, while Thor was at work. While Nadia napped and I would find myself crying, Einstein would just come up to me and rest his head on my lap, and just BE THERE. It would force me to pet him, then his tail would wag and my heart would feel a little less heavy with the weight of the situation. The house feels so much emptier, there is a little less cosmic energy. I can understand now why people turn around a week later and get a new pet after losing theirs. I never understood it before, but I do now. He was a great dog, and taught me so much and I am a better person because of him. We were lucky to have had him in our lives.
Nadia and her daddy got season passes to one of the local ski hills and Nadia has become a regular ski bunny. She has even done a few blue runs. She is loving it, probably mostly spending time with her daddy. We have a family trip planned for Jamaica in March with Nadia’s aunts, uncles, Nanny and Poppa Raj and her cousins. Her cousins are what she is most excited about it. She is obsessed with them, and I realised why the other day. They were the only ones she could really play with post transplant. They are all older than her, and their parents were great at making sure their vaccines, flu shots were all up to date and the only kids I really trusted to be around Nadia for a long while post transplant.
During Nadia’s chemo prep 4 years ago, the Sochi Olympics were on and we watched them. Nadia wasn’t too interested in them, but Thor and I watched them when we could, it was a great distraction. It has been really great this time round watching a few more events with Nadia, who was more interested. The other night we watched the Women’s Ski Cross final. We had 2 Canadians in it, one of them a local. Nadia cheered and hoorayed the whole time, and at the end when Canada claimed the Gold and Silver, Nadia was soooo excited. I told her that the girl that got first was from Kelowna. Then Nadia pipped up and said, “I want to do that”. And of course my response to her was ,well now that you have platelets you sure can!!! So thank-you donor, wherever you are, you have given life to two humans, and perhaps a future Olympian!!
P.S if you know someone between the ages of 17 and 35 please encourage them to sign up for the bone marrow registry, they have the possibility of saving a life at www.blood.ca. If you are too old to register, then consider donating your blood.