It's taken me a while to update, but it's better late than never, and better yet, it's good news! Here you go!
On Monday (5/14), Nate and I took Beck to the hematologist at the U of I Children's Hospital. After a blood draw, Beckham's hemoglobin came back lower (7.2), which was not unexpected because of his pale skin and low energy level, but we also got a shocker of his EBV (Epstein-Barr Virus, aka: Mono) coming back slightly positive. EBV is not a good thing for a transplant patient - it can make them really sick and it can sometimes cause tumors to develop. Luckily, Beckham's EBV markers were very low, and so low, that the transplant team would not necessarily consider him having acting EBV. But because he is symptomatic, there is a good chance that the little bit of EBV in him is making him sick and could be the cause and explanation for all that's been going on with our little guy. So, of course, we weren't thrilled with this news, but it could have been a lot worse and at least now we had a treatment plan. Beckham was scheduled for IVIG right after the appointment, Nate stayed with him at the hospital, and I went home to put the baby down for a nap.
After returning home, Nate called and said that there were some mysterious charges on our debit card. I took a look, and sure enough, someone had stolen my debit card number and had gone on a shopping spree, completely emptying out our checking account (awesome). I made a few phone calls to the bank, the police, and to the stores that had purchases from our card, and after a few days, all the money had been refunded. Gotta love thieves, right?
By Wednesday, Beckham was actually perking up and had a little pink in is cheeks. We were thrilled by this development and hopeful the IVIG had worked its magic. And when his labs were checked again on Friday, his hemoglobin had risen to 8.4! Yeah! With such good news, we felt a celebration was in order, so I strapped Blythe and Beckham in the double stroller and set off on a walk to pick up Gwen from school and then stop off at the park. Unfortunately, while walking, I had to maneuver around some sidewalk construction, and when I got to the other side, I did not notice a cement dust mud puddle that caused me to slip, try to stop my fall with my arm, dislocating my shoulder in the process, and tipping the stroller backwards, causing the kids to be completely upside down. The worst part was that I could not set the kids upright because my uninjured arm was wedged underneath the stroller and my dislocated arm would not move either. Beckham kept staring at me, saying, "um, Mommy, I think you need to pick me up." Fortunately, a nice man saw me fall and ran over, picked up the kids, and helped me call Nate for some help. We're all doing a better now...a little sore, but much better!
As for this week, Beckham had labs on Monday which showed his hemoglobin at 9.2! His EBV was checked again, and if it comes back at all elevated, than IVIG will be repeated. At this point, we have not heard the results, but Beckham is not considered contagious, and I sent him back to school on Tuesday so that he can enjoy the last 2 weeks of school.
Thank you all for the prayers, thoughts, and kindness that has been showed to our family over the past few weeks. I feel this huge sense of relief and gratitude in my life, knowing that our little guy is not relapsing back into his Evans Syndrome. What a blessing...a huge, enormous, gigantic, incredible blessing.
-Kim
By Wednesday, Beckham was actually perking up and had a little pink in is cheeks. We were thrilled by this development and hopeful the IVIG had worked its magic. And when his labs were checked again on Friday, his hemoglobin had risen to 8.4! Yeah! With such good news, we felt a celebration was in order, so I strapped Blythe and Beckham in the double stroller and set off on a walk to pick up Gwen from school and then stop off at the park. Unfortunately, while walking, I had to maneuver around some sidewalk construction, and when I got to the other side, I did not notice a cement dust mud puddle that caused me to slip, try to stop my fall with my arm, dislocating my shoulder in the process, and tipping the stroller backwards, causing the kids to be completely upside down. The worst part was that I could not set the kids upright because my uninjured arm was wedged underneath the stroller and my dislocated arm would not move either. Beckham kept staring at me, saying, "um, Mommy, I think you need to pick me up." Fortunately, a nice man saw me fall and ran over, picked up the kids, and helped me call Nate for some help. We're all doing a better now...a little sore, but much better!
As for this week, Beckham had labs on Monday which showed his hemoglobin at 9.2! His EBV was checked again, and if it comes back at all elevated, than IVIG will be repeated. At this point, we have not heard the results, but Beckham is not considered contagious, and I sent him back to school on Tuesday so that he can enjoy the last 2 weeks of school.
Thank you all for the prayers, thoughts, and kindness that has been showed to our family over the past few weeks. I feel this huge sense of relief and gratitude in my life, knowing that our little guy is not relapsing back into his Evans Syndrome. What a blessing...a huge, enormous, gigantic, incredible blessing.
-Kim
3 comments:
Yipee! Wonderful news. minus the fall :>( Hope his tummy is better too.
I will Pray things keep improving.
We are so grateful for Beck's recovery. And that his heart is strong. We also express our deep love and appreciation to Holly and Andy and especially to Jakie for the sweet donation of a precious life saving heart that keeps our Beck alive. For eternity we will all thank this wonderful family for such an amazing decision to donate life.
As I read over the post Kimmy wrote I could not help but be thankful for her tenacity and her
ability to endure all things difficult. I also am so greatful that she always requires excellence of herself and of those around her. Heaven needs to help the crook that stole their money because he will have Kimmy Scadlock after him..ticked..Love Lois and Bruce
Prayers for your adorable little Beckham. Found your blog (and Holly's) through Woman's World. :) Stories like these make me so glad that I've been an organ donor since I got my first license~ hoping that when I go, someone will benefit. I'm also on the living organ donor registry. Our youngest daughter battled ITP for years when she was little. God delivered her from it and I hope one day to give hope to another family going through worse circumstances. How amazingly unselfish Jake's family was~ that they thought about another family's grief in the midst of their heartbreak! Your family was doing the same thing by praying for the donor family. God bless all of you!
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