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.
Praise God for giving you courage to write this, Sandra. I’m crying from reading your account, your pain is so strong. Praise God for you being willing to risk putting your heart out here – in order to offer hope and courage to another mom following your path.
Do not for one minute blame yourself – anemia is such a gradual change. Thank you for reminding all of us that our blood or bone marrow could save a young life.
Many prayers & much love,
Gini
Thank you, Gini. Your love and support have been such an encouragement and blessing. Truly. Thank you.
Oh Sandra, I’m so sorry that David has to go through this. And I know that it’s natural for us moms to beat ourselves up, but you are not stupid! You are a wonderful mom! I don’t know how many times things have happened with my kids and I get so angry with myself for not realizing what was wrong sooner. We aren’t doctors and we aren’t parenting experts…I’m going to get things wrong and so will every other mom out there. The thing to focus on is that you have David with some of the best doctors on the planet and God is hearing so many prayers for him. I’m praying that this will all be a thing of the past one day soon π
Thank you, Erin. And, yes, I’m very grateful for all the doctors and nurses and support staff that are caring for David. We’ve very blessed. I just wish this wasn’t happening.
I’m sorry that you’ve been dealing w/ this & we will continue to pray for David & your family. As normal as I think it is for us moms to blame ourselves or beat ourselves up, you really shouldn’t. You are a fantastic mom. You are strong.. Hang in there.
Thank you, Tamara. It’s still hard to look back at pictures, because when I do, I see more showing clear signs that something wasn’t right.
Sandra and Ruben, I’m in shock with tears running down, I just read the blog. I’m so sorry to hear about sweet David and I’m praying for him and your sweet family. I know you 2 are the best parents I have seen, please let me know if I can do anything from here in Ga. Sending hugs and love to you all.
Oh, Rhonda, thank you SO much! It has been incredibly difficult and each week is a challenge, but by God’s grace, we are walking through this and believe that one year from now, life will look much brighter.
You will have to get in line to claim the worst mom ever award. You cannot beat yourself up mom. Look at what you :DID: do. You looked through the pictures, you saw something was wrong and you didn’t wait until Monday! I say way to go Mom!! Look in to a cord blood transplant. Don’t settle for them saying we don’t do them here. Feel free to email me. I’m so sorry you are having to go through this with your precious child. (((Hugs)))
Thank you so much, Jolene. By God’s grace, there is an unrelated donor in the national Be the Match registry who has agreed to be David’s donor. Praise the Lord. His transplant should take place in December with further preparations being made this month.
Sandra, this breaks my heart. I’m so sorry for you all and we will be praying for David to find a donor.
Sometimes it’s hard to see our kids change right in front of us, but thankfully God allowed you to see it and now you are doing everything you can.
And thank you for sharing this, even though it may be hard. This will help other parents to be aware of these symptoms, just in case.
God bless you all and please post if there is a way to help.
In Christ’s love,
Debbie
Oh, Debbie, thank you. You’re prayers and support mean so much to me. By God’s grace, there is a donor in the registry for David. We don’t know where he lives (both sides are given extremely limited information until 1 yr. post transplant), but we know that he went in this week and will decide what day he is able to donate his bone marrow in December.
you are NOT the stupidest mom in the world!!! praying for y’all!! love.
Thank you, Brooke! Love to you, girl!
Sandra, none of us believe our kids will come down with a terrible disease. When you have a child going down in health it’s hard to see it. There is no shocking event to tell you something is wrong.
It’s not good to think about how you should have seen it sooner. I know how mom guilt can wear on your soul and rob you of the strength you need to face this with your son, David.
I’m praying for all of you.
Thank you so much for all your support and prayers for our family, Shelly. I’m so blessed to call you friend!
Our daughter was sick for about a week, I thought she had the flu. I took her into the Urgent Care at 5pm the day before her 3rd birthday. The doctor told us she had an ear infection and prescribed some antibiotics. She was jaundiced and I asked the doctor if it was normal for her to be this yellow. He thought it was her normal color, then requested a blood test and told us to go straight to the ER where she would be admitted and a doctor would be waiting for her. We were in the ER waiting room for 6 hours and were never seen. She seemed to be feeling better and we had an appointment with her primary in 2 days, so told the front desk and we left. God was watching over us, because we had so many calls return back to the ER that night. When we finally returned her hemoglobin was below 2. She was diagnosed with ALL leukemia and btw had no ear infection. I can’t tell you how stupid I felt for leaving. We were exhausted, I didn’t want to have our daughter spending her birthday in the ER. The thoughts of us never going back that night still haunt me because I don’t think she would have survived if we didn’t go back.
Wow, Gina. Thank you so much for sharing your story. The Lord was definitely watching over you, and I’m thankful for his faithfulness during these times and every day of our lives.
Did your daughter end up having a bone marrow transplant, stem cell transplant or chemotherapy?
I can’t even imagine going through what you are going through – please know that you, David and the family are in my prayers. Do not blame yourself or feel guilt. I hope for a match!
Thank you, Xenia. By God’s grace, there is a match, and we’re hoping to find out very soon when he can donate next month.
Oh. My. Gosh. Sandra, first of all, I’m so sorry and I hope David is having more good days than bad. Second, you are NOT the stupidest mom in the world. I know how you feel though. We caught Sara’s dip dysplasia when she was 15 months old and I felt just the same. Praying for a match for David. <3
Thank you, Michelle. By God’s grace, there is an unrelated match in the bone marrow registry, and we should hear back in the next week on the date he can donate for David. We’re praising the Lord for this.
Hi my 4yr old daughter was aplastic anemia anf had a BMT How is David doing today.
Sandra, my name is Melina I am 15 and in 9th grade and I am doing a paper of my choice on a topic that is linked to anemia I wanted know if you could tell me anything else from you point of view on anemia. I understand if you don’t want to , Melina