Food, DIY, Chicago Mom Blogger
I know this video is late. π
I decided to try using a different computer to edit my video and upload it to YouTube. That was a mistake because the video upload kept timing out and failing.
With the help of my husband, we finally got it to upload around 8 hours later…
Lesson learned, and I’ll be using my regular method next time.
My Video Blogging Plans – Moving Forward
For the next few months, I’m going to try to create one video each day as we prepare for David to go through a bone marrow transplant, and then I want to continue to create videos each day as he goes through it. My desire is to share our very personal story in the hopes that it could be a source of benefit and encouragement to a family who may find themselves in a similar position later on down the road.
I know that Ruben and I own a debt of gratitude to all the families who’ve shared their struggles and joys as they’ve walked though the horrible experience of having a child diagnosed with severe aplastic anemia. I’ve been following tons of Facebook pages that are updated by moms and dads who are walking through the ups and downs of this disease with their precious son or daughter, and I can’t thank them enough. Because of their transparency, we don’t feel alone in this, and we know that there are families out there who know exactly what we’re going through.
Spreading Awareness
I also want to spread awareness and help people understand that when someone is diagnosed with aplastic anemia, they don’t need an iron supplement.
They need a blood transfusion…and a bone marrow transplant. It’s serious.
Lastly, I want to encourage people to register to become bone marrow donors. It’s easier to register than you might think — I’m hoping to show you just how easy it is in an upcoming video. But think about it, you could be the match that someone else out there needs. By God’s grace, your bone marrow could be the cure to their disease. That’s pretty awesome!
Look for my next video tomorrow and then every day after that. If you have any questions you’d like me to answer, feel free to ask them in the comments either on this post or on YouTube.
Oh, and these videos will be raw. David’s going to be receiving chemotherapy. That will be horrible, and his hair will eventually fall out. God is in control; though, and we’re trusting that He’ll bring David through this.
I will essentially be living in a hospital room, so my hair will be messy, and I may be wearing the same clothes two days in a row.
It’s been almost a month since I’ve written a post about David. You can read part 1 of his story here.
I’ve been wanting to write and continue to share his story, and as I’ve thought over how I want to share his story with you, I’ve been mulling over the idea of creating videos to be able to tell the story more fully. I want to talk more about how life has changed for David, what it’s like today, and show you what it looks like for a family to walk through a bone marrow transplant with a child.
Because, by God’s grace, David will be having a bone marrow transplant next month. I’ll talk more about that later, but I’ve shared dates and details about the transplant on David’s Facebook page, if you’d like to know now.
There’s much more to come.
For now, (because I’m at the library and forgot to bring the tripod) I’ll write and continue the story of how we found out that David didn’t have leukemia but did have a horrible, terrible life-threatening disease.
Ugh. As I wrote those last words, my heart sank. Writing this story is hard for me. I’m reminded that this is real life. David is sick. He’s home today — face and body full of bruises and pin-point red dots called petechiae. Why? Because he has aplastic anemia. His platelets are incredibly low right now, but he’s been in “this place” before, and his doctor would like him to make it to his appointment on Monday morning before getting another transfusion.
Will that happen?
I don’t know. If David hits his head today and there’s even a little swelling, we’ll have to take him to the emergency room where he’ll get a CT scan and be transferred by ambulance to the Children’s hospital in Chicago. He’ll receive a platelet transfusion as he sleeps and be observed by the nurses and doctors there. When he wakes up, familiar hospital staff will remark that “David’s back!”
But he doesn’t want to be back. He wants to be home.
I know this because it’s happened before.
Okay, I can do this. Back to the story…
When David arrived at the Children’s hospital in Chicago, there was no small amount of doctors and nurses in the room.
As they begin to observe David, a doctor kindly looks at me and asks, “Do you know why you’re here?”
“Yes…because David may have leukemia,” I reply.
It’s welcome news to the doctor to know that I’ve been filled in, and she continues her job.
We’re in the PICU (Pediatric Intensive Care Unit), and that night, David receives his first of many blood transfusions. There are no immediate answers, and we won’t find out if David really has leukemia or if his illness has been caused by some sort of viral suppression as another doctor has suggested. We won’t find out until a bone marrow biopsy can be performed on David, which will be in the very near future.
That night, I get online as David lays in bed. He’s looking and feeling better now that he’s received some much needed blood.
I don’t know exactly what to type into Google, but I try something like “what does it mean when your white blood cells, red blood cells, and platelets are low.” I land on a website that describes a disease I’ve never heard of before called aplastic anemia. Then I read about that disease, and I think to myself, “No. No. No. David does NOT have THAT disease. He just doesn’t.”
The Diagnosis of Severe Aplastic Anemia
David goes through a bone marrow biopsy and as we wait for the results (which takes days), I listen in one morning as the doctors perform rounds and discuss David’s plan of care. I hear the words “aplastic anemia” uttered by one of the doctors.
No.
What did she say? Did she just say what I think she said?
It can’t be that.
But it is. And it is very severe. David spends days in the hospital and receives transfusion after transfusion until he’s well enough to go home. On the day we leave, our four other children all have blood drawn to see if one of them is a match for David and can donate their precious bone marrow to save his life.
At this point, as a mother, I feel like I’m dying inside.
To be continued…
One of my goals for writing these posts is to raise further awareness about aplastic anemia and even encourage others to register for the national bone marrow registry, Be the Match. By God’s abundant grace, a match was found in the registry for David, and a man we’ve never met will donate some of his precious bone marrow to David next month. If you have any questions, feel free to ask away in the comments, and I’ll share as much as I can.
I’m not exactly sure where to begin this post.
But I think it’s best to start with the day I finally realized that something was terribly wrong with my four year old son, David.
It was a Saturday night (August 3rd), and I was looking through old pictures of my family. I needed to find a picture that best represented our family to turn in for an upcoming writing assignment. As I looked further back to older pictures that were stored on my laptop, my eyes fell on this one.
I immediately noticed how different David looked in this picture compared to how he’d been looking over the past few months. I noticed the color in his face, his pink lips, and his smile. He looked…healthy and happy.
That was my David.
He’d somehow disappeared over the months and become the David we knew now….cranky, cold, tired, and often lashing out at siblings.
Ruben and I had been noticing changes in David’s behavior but never thought it was something I needed to make a doctor’s appointment for. We didn’t know what the problem was but whatever it was, we thought David was just different than our other four kids. He needed to ride in the stroller when we’d go out because of how quickly he’d become tired. And we needed to remember to leave the house with a jacket for him for when he’d be cold…when no one else was cold.
After I admired the happy, healthy-looking picture of David.
My eyes fell on this picture.
It still takes my breath away.
And I feel like the stupidest mom in the world when I see it.
Ruben took this picture of our five kids when we were in Chicago at the end of July for the BlogHer’13 conference. He spent time with the kids while I went attended the conference.
Immediately, when I saw this picture, I knew something was terribly wrong with David. I called Ruben over to look at the pictures and told him I’d be making a doctor’s appointment for David on Monday.
But then I woke up on Sunday morning, and I started noticing everything wrong about David. The insanely difficult mornings filled with anger, screaming, and crying, trying to get him ready for the day weren’t normal.
David wasn’t simply “not a morning person.” He was sick. The constant requests for someone to “sit with me or lay with me” weren’t just David wanting to cuddle. He was tired and had no energy. The change is his overall color — it was real and not my imagination.
Ruben had gone to church that morning with our older kids while I stayed home with the little ones, because we had a virus of some sort going through our family. I text messaged him and told him that I’d be taking David straight to the emergency room once he was home.
When we arrived at the ER, I carried David inside because he was too tired to walk. After a brief rundown with the person at the desk, David was taken straight back, and the ER doctor immediately knew that something was wrong.
She was right.
David’s hemoglobin was at 2.Β (A normal level is anywhere from 11.5-13.5.)
He had a platelet count of 6.Β (A normal platelet count is anywhere from 150-400.)
And his white blood cells were low.
My mind was trying to understand what these numbers written on a white sheet of paper meant for my son. I found the courage to ask the doctor for the bottom line.
She wasted no time in telling me that she believed David had leukemia. He would be transferred by ambulance to Children’s Hospital in Chicago.
To be continued….
David’s Symptoms of Aplastic Anemia
- Cold
- Tired
- Irritable
- Pale/Yellow skin
- Rapid heart rate
- Bruising
- Petechiae (tiny red or purple spots on David’s body)
One of my goals for writing these posts is to raise further awareness about aplastic anemia and even encourage others to register for the national bone marrow registry, Be the Match. Lord willing, someone in this registry will save my son’s life. If you have any questions, feel free to ask away in the comments, and I’ll share as much as I can.
