CHOC Taryn Ulster Story

The reality for families facing childhood cancer during a world wide pandemic

CHOC Taryn Ulster Story

Craig is in remission and has been for a while and so he isn’t at any more risk than anyone else as far as Covid-19 goes… As a coping mechanism I didn’t really allow myself to think about what if this had happened then? What kind of state would we have found ourselves in? But that’s just it, isn’t it? There are families like that right now…

I was just scrolling through my google Photos album and I saw a memory from two years ago come up and I found myself in tears…

As I clicked on it, it took me right back there, right back to Craig with no hair or eyebrows, while externally he was just a skinny little bald boy with no eyebrows or eyelashes, but almost always smiling, even when on paper his results showed that he shouldn’t “look” so happy and fine, internally there was so much more going on, a port-o-cath in his chest, just under the skin, but all you saw was a little pipe, that same little pipe that fed chemotherapy straight to his main artery, to his heart and pumped through his body. He basically had no immune system or much to speak of anyway, he often had low platelets, low white cell count and more, in a normal white cell range of 6.00 – 16.00 his was 0.18, in a normal platelet range of 180 – 440 his was 17 (this is an example of one of his actual lab reports). My point is, that even though he is fine now and his immune system is that of any child his age, pretty darn great actually since he almost never gets sick, there are so many more “Craigs from two years ago” out there, now, and to make childhood cancer and chemotherapy even more daunting, it’s during this terrifying Covid-19 Pandemic.

Realising that now as I scrolled through the pictures brought me to tears, thinking about all the little boys and girls in treatment with often severely compromised immune systems, right now, during Covid-19 pandemic, it terrifies me to even think about it. If this had happened two years ago, what would that have meant for us? It probably would’ve meant that I would be in lockdown at home, 7-8 months pregnant and with my two other kids while Jonathan was with Craig at the hospital for 5 weeks 24/7 instead of only 3-5 days at a time, and I wouldn’t be allowed to even visit. If you know a little about our story and Craig’s journey then you’d know that Craig was very attached to Jonathan, daddy was his world and mommy existed in it, he never called for me when he needed comforting, he called for daddy, we had our special moments but daddy was number one, because his baby brother Joel was still breastfeeding and I was pregnant. Jonathan always stayed overnight and I stayed during the day while Jonathan went to work, it really did work out that it was that way because I would’ve been heartbroken if Craig cried for me and I honestly couldn’t stay overnight with him, considering, so it really was a blessing that it worked for us that way. But if it was with this virus and lockdown, it would’ve meant that none of us would see Craig or Jonathan for the duration. That said, even then, two years ago, without Covid-19, social distancing and the National Lockdown, our family was in our own Lockdown anyway. We couldn’t go to malls, indoor play centres, church or crowded spaces and he missed several birthday party invitations too, it was too high risk for Craig because his body would potentially not be able to handle getting even the simple flu. Emotionally it took its toll, praying we had been cautious enough so that he didn’t pick up any colds or flu, a simple cough lingered far longer than we’d liked and took a lot more antibiotics than we’d like to have administered to get rid of it. Now, with this super flu virus plaquing the world it is so much more scary for someone with cancer, that fear and anxiety that some of us are living with during Covid-19, I’m sure is so much harder to bear when you have a child with basically no immune system, that you’re worrying about. Yet, that is exactly what some families are facing, on top of something as horrid as childhood cancer and chemotherapy, now the threat of Corona Virus is added to it too. But, it’s happening, and it’s for those children and those families that we all need to just stay home and stop the spread of Covid-19.

Now that I’ve put a face and family to what is happening to so many right now, doesn’t it just hit you a little harder? Make it a little more “real”? Because that is a reality for families facing childhood cancer right now, they just don’t have the platform to share it. But I do, and so I’m sharing this here now to make all of you aware of those children and families. Thanks to organisations like CHOC who make their situations a little easier, take the stress off just a little, and make life a little better to handle through the support during their family’s childhood cancer battle.

Taryn Ulster

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