So, in my Mother's Day post, I shared about Bubba and his newest challenge. We were looking at a diagnosis of neutropenia...a rare blood disorder affecting the white blood cells that fight bacterial infections. We knew very little and hoped for more answers as we met with the hematologist. It was a very nerve-wracking wait, not knowing more than what we researched on the internet...and we all know how reassuring Google can be...ha!
So we met with the hematologist and had blood work done. It was a very draining day. Pediatric hematology is group with oncology...and it was a very humbling and heartbreaking experience to sit in that waiting room. I hugged my children just a bit longer and a bit tighter that night.
The first words out of the hematologists mouth was "He doesn't have cancer." That was our first sigh of relief. Then he went on to explain that neutropenia has many types and variations, as well as many known and unknown causes...so clear cut, right?He basically told us that we were looking at a series of blood work and counts over 4-6 weeks to determine what exactly was going on with Bubba. It wasn't going to be a quick answer or a quick fix. And any time he got a fever, we were to call and be sent to the ER for blood cultures and IV antibiotics, typically followed by more antibiotic injections or hospital admissions. It was going to be a long stressful month as we waited for results and answers.
So for the record, here are his numbers as we traveled this unknown adventure:
week 1- 200
week 2- 100
week 3- 960 (in ER with double ear infection)
0 (2 days later at re-check at hematology)
*Yes, folks, 0...my friend asked if he was even human :)*
week 4- 600
week 5- 200
week 6- 600 (in ER with Hand, Foot, and Mouth virus)
week 7- 700
At this point we were given a one month break until our next appointment since he seemed to be on a upward pattern. Now we still had to call with a fever but no need to rush to the ER. And we had finally gotten a big test result back that had been a challenge to get. Seems there are these antibodies that certain people make that attach themselves to the neutrophils and kill them off. The doctor was quick to reassure me that it's not as bad as it seems...yeah, right! So Bubba tested positive for the antibodies, meaning that 96% of his neutrophils (at the time of the test) had antibodies attached to them that would kill them off...96%!!!! The good news is that this ruled out some scarier types of the neutropenia...the bad news is that he is now "almost certainly" diagnosed with auto-immune neutropenia. The good news is he will most likely out-grow it by age 5...the bad news is that he has the potential to get very sick very quickly at any given time.
At this point, he has been doing well. He had one cold and one fever since the last hematology visit and we just checked in with the doctor. He seemed to recover just fine. He is working hard at being an almost-toddler...climbing, biting, laughing when we tell him "no"...yeah, good times at the House of Sprout! We go for his next appointment on Monday and I'm curious to see what his numbers are but completely nervous to have him stuck again - they blew one of his veins at his last blood draw and made Mommy almost cry (and with all our kids have gone through, that's hard to do!). So please keep us in your prayers and we'll promise to update...really, I promise!!!
Mother's Day was a tough one this year. We are struggling accept my own mother's health issues and limited time with us while living such a distance from family. No matter how old you are...it is just rotten to know your mom won't always be there for you :(
And two days before Mother's Day we had taken Bubba for allergy testing to diagnosis what we were sure was a milk allergy. But then the skin testing was negative. And we decided to do the blood work to get a more accurate answer. And on a whim the doctor threw in a few additional tests on his blood to check his immunity...and that's when our world was turned upside down.
Within hours, I was getting frantic calls from the allergist. Bubba's white blood cell count was off. (Here's your brief introduction to hematology...we have three types of white blood cells - one type fights viral infections, one I can't remember :), and one fights bacterial infections.) The last one - neutrophils - is what was off in Bubba. Normal neutrophil count is 1500 and above. His was 200. Yes, 200. He was in a state of acute neutropenia. He was at an extreme risk for severe, life-threatening infections. We were scheduled to repeat his blood work and meet with a pediatric hematologist in a week...as in they "fit us in". It was a scary thing...any sign of a fever and we were immediately to be heading to the ER.
So...yeah. That was the mood of my Mother's Day.
My solution? Let's go to the beach! It wasn't warm enough to go in the water so we didn't wear suits...but it was a perfect therapy session for our minds and our souls! It didn't hurt that we ended it with ice cream (no pictures - but Bruiser did ask if I wanted to take a picture before they started eating...guess they are trained!)
What? I'm sick? Really?
My loves...all of them!
And then after ice cream, came outside playing, relaxing, and just being.
We are a busy, Christian family of six. We love to share our successes, trials, and silliness with our family and friends! Watch as we grow as a family and as individuals - and laugh with us through our daily adventures in life!