An introduction to blood disorders
Nurse Practitioner Celina Woo shares about her job and provides some interesting information about blood disorders.
Hi! I'm Celina. I'm a Hematology/Oncology/BMT Nurse Practitioner at BC Children's Hospital. I work with kids who have a hematology diagnosis. Hematology is the treatment or study of problems in the blood. Some blood disorders can be lifelong conditions. Others may only affect someone for a period of time. Some blood disorders are classified as cancer, and others aren't.
What I love about my job
I love working with kids. I want to make life easier for them and their parents, especially when they live with a chronic condition.
I enjoy helping them live to their full potential. Their health condition shouldn't limit them from trying new things.
They should be able to participate in activities like their friends, but they may need some extra preparation or a back-up plan in case of injury.
Support beyond the family
I get to talk to other people involved with kids' everyday lives. I help them to understand the child's diagnosis, explain how they are able to participate, and hopefully make it less scary for everyone.
For example, with our patients with a bleeding disorder, some people worry about the child bleeding. They don't bleed faster than anyone else, but it may take longer to stop. Some children have been told to sit out of physical activities because of concerns around potential bleeding risks. That can make them feel singled out and different. Most times, the child can do all the activities their classmates are doing. We just need a plan in place.
Blood disorders can be rare
There are so many different types of blood disorders in childhood. Some are more common than others, but many of them are very rare. The disorders don't seem so rare to me, because I see them all the time. However, patients and families may not know anyone else with the same diagnosis as them.
Some disorders may be so rare that they only affect a handful of people across all of Canada, or even around the world.
They affect kids and families in other ways
There are too many examples to mention, but here are just a few:
- With some disorders, you wouldn't know from looking at the child that they live with a serious illness. Some kids find it hard when people don't see or understand the illness they live with and how much it impacts their life.
- Other disorders can impact a child's growth and development, which requires referrals to more services. The process can then feel quite medicalized for some families.
- Unfortunately, some kids have dealt with unkind comments about their size or questions that feel intrusive (find out more about this in Ezra's awesome blog).
- For parents of children with a chronic, lifelong condition, they still feel the stress of navigating their kid's transition out of childhood in all the normal ways. Things like graduating high school, starting work, and becoming an adult. But they also feel the stress of helping their child to manage a medical condition for themselves. If they don't learn to seek care at the right time or keep on top of things, they might not see the effects of it right away. It can affect them down the road.
What treatment can involve
Some children might need a bone marrow or stem cell transplant. The transplant process wipes out their immune system by giving them chemotherapy. We then introduce new healthy stem cells.
For a patient with hemophilia, treatment involves replacing a missing protein that helps their blood to clot properly. Some children need to take oral pills, receive injections, or get regular IV treatment. To help with this, we can teach families and patients how to do IVs and injections at home.
Some children and young people need to come into hospital regularly to get blood transfusions. Coming in for a transfusion every three weeks for the rest of your life takes a huge chunk of your time. It can take three to four hours at a time, not including the prep time, and you have to live near a hospital to do it so regularly.
Treatment is always patient and family centred.
Hematology families shouldn't be left behind
The beauty of WCK is that they are there to support patients from so many different diagnoses who are treated in the same space. I've found that it's been super inclusive and amazing to work with them. For example, getting to come to camp is such a huge thing for kids with blood disorders.
It means a lot that WCK programs are not just for families with a cancer diagnosis, because kids with blood disorders are treated on the same floor at BC Children's Hospital and they need support, too.
I used to volunteer at camps and have seen the benefits for kids who get to experience summer camp with the medical supervision they need. For families who can't/don't feel comfortable putting their kids to a regular camp, it's mind-blowing. They say, "My kid can do this? I can have time away from them? I don't have to worry about the medical side of things?"
Many places can see a serious health diagnosis, start to worry about what it is, and decide that it's not safe for the kid to participate. That's been hard for many families. But WCK welcomes them with open arms. They take away that healthcare burden and reassure caregivers that their kids are well taken care of.
Blood disorders are about the long haul
As healthcare professionals, we see families for such a short snapshot of their lives. But from the parent perspective, they may have to take a day off work every three weeks for transfusions, with no end point. Patients with hemophilia may need treatment injections every other day or every week. For some patients having a stem cell transplant, parents have to make sure their child's immune system stays healthy for a prolonged amount of time. This is trickier than it sounds, because kids tend to get sick frequently - it can be anywhere from six to 10 times a year!
For some children, if they get sick and get a fever, they have to go to hospital. This is so they can get checked and receive treatment, as the body can find it hard to fight bacterial infections. If you're getting sick every other month, that's a lot of emergency visits. It's something you can't predict. You just have to pack up, call the on-call doctor, go to emergency, and reorganize everything in your life with little time to prepare.
We have a new therapy for some hemophilia patients, which has been life-changing. Families said they didn't realize how much anxiety or burden they were carrying with the previous therapy. Now they may only have to think about it for five minutes every two weeks. Before, they were getting IV treatment every one to three days.
Some families felt that they always had to be close to their kids so they could respond quickly if they had an accident and needed treatment. Now, they may be more willing to let them go school field trips or sleepovers with friends. This was a reminder to me of how huge the psychosocial aspect of navigating these illnesses is.
WCK programs make a difference
The kids and young people may not have the same exact diagnosis, but through WCK programs like City Camp they get to meet others who have similar experiences of hospital visits and treatments.
They don't feel like the odd one out. It really helps them feel less alone and gives them fun experiences to look forward to.
The fact that the programs are open to siblings matters as well. Their parents may have to leave them to go to the hospital many times and they might be left with their grandparents or other caregivers. Their life is turned upside down in a different way. The opportunity for social connection and support through WCK is amazing.
The full freezers and snacks from WCK are a big deal. If someone's here all day getting treatment or a transfusion, it makes a huge impact that they don't have to worry about how to feed their child or themselves.
Families who have driven for 10 hours from Prince George can help themselves to the nourishment they need, when they need it, at no cost. For a family that has already had to cover the cost of gas for their journey, this is a huge deal. Outpatients can often be left to fend for themselves, so making the food available for them too has been incredible.
You can help, even in little ways
The little things matter. We can recognize and honour families for all the work they do to look after their child.
We can give whatever we can afford to WCK programming. I've seen the difference a five dollar meal has made to a family in the thick of it. Our gifts can go towards camp, food, and social connection. These things relieve the burden for families and have a huge impact on their stress and coping.
Everyone's always scared of the unknown. We can talk and share information about blood disorders and help reduce that fear. Let's remove the stigma through education. We can help to make sure kids living with blood disorders are treated like normal kids.
Through raising awareness, we can make it clear that blood disorders are just as important as cancer when it comes to resources and support for families.
Get involved!
You can help to raise awareness of blood disorders.
- Think of a friend to tell.
- Share this blog with them (use the url at the top).
- Spread the word on your social media!