Those are the words I continue to repeat now. For those that follow me on
Facebook, you know that Rhett is dealing with issues with his bone marrow and the production of red blood cells. This is just a little more detailed information.
This sweet green-eyed boy has always had fair skin. He's always had a little tint of red in his hair, beautifully flawless, soft white skin, and those amazing green eyes that tend to change colors occasionally.
It was only recently that I noticed he looked more pale than usual. I guess I noticed it a couple of weeks ago but chalked it up to changing weather patterns or some little bug he may have picked up that might have left him just a little puny.
He seemed to gradually get worse but along with the paleness I began to notice that he was fussy and frustrated. Almost like he was trying to tell us that something was "off". I guess what made me finally take notice was him getting choked one night that we had gotten together with some friends. He went limp, his mouth turned blue, he was white as a sheet. I tried to hold it together but I was terrified. He wasn't coughing or gasping for air...just limp. I sat him up and when I did he burped up a nearly digested
Oreo cookie. Then some of the others began to comment on how pale he was. That following Sunday morning as I was getting him ready for church I noticed that his feet had absolutely NO color in them whatsoever. I told Brandon then that something was wrong.
Against advice that others always give about searching for symptoms on the
Internet, I began to see that he and his symptoms fit into the anemic category. So, Monday morning I scheduled him an appointment with the pediatrician fully expecting them to tell me he was anemic. I won't go into all the details of Monday but it was awful. Three of us holding my baby down on a table for lab techs to draw blood had me in literal tears. The doctor came back in after some of the preliminary blood work and told me that he felt pretty confident that they had ruled out Leukemia. I didn't know that was a possibility that they had even considered! He said that he was afraid that his blood work would have come back showing that (based on previous experiences) but was thankful that didn't appear to be the case. So, more blood work to follow showed that his red blood cell count was super low and his
retic count was almost zero. (BTW, just in two days I've learned a lot about this terminology. I'm almost a doctor now! Ha.) He is anemic. They just aren't sure why. It's not due to the two most common causes; #1 being iron
deficiency and #2 being Leukemia). From all indications his bone marrow isn't making
reticulocytes (which mature into red blood cells). They think is is a condition called
TEC. (Side note: our pediatrician said this is one of those conditions he remembered studying in med school and looking at hypothetical cases, yet he's never, in his years of practicing medicine, actually seen or treated a real case. So, he's called in a few other doctors one of which is a pediatric
hematologist at Vanderbilt.) Of course,
TEC stands for some crazy long medical term that I'm not even going to attempt to try to spell here. Basically though, the marrow doesn't produce these cells which depletes the red blood cell supply once his existing red blood cells die off, thus causing the pale appearance, increased
heart rate, tiredness and crankiness. Since he has so many fewer red blood cells, the heart is pumping faster to circulate what is left in his system.
The good news is that all indications are that this condition corrects itself over time. His marrow will eventually kick in again and begin doing what it is supposed to do. The down side is that until his marrow begins producing again, his red blood cell supply will continue to go down. If this happens a blood transfusion will be needed. At first thought this is terrifying to me. But if it helps him get better in the end, obviously that is what we want for him. It's heartbreaking to see him feel so bad.
So, what's next? We wait. (Hence, my new saying, "Be still and KNOW") Unless he gets much worse before next Thursday (April 1), we have an appointment scheduled with the lab that morning and the doctor that afternoon to go over lab results. If his red blood cell counts and
retic counts are the same or lower, we'll be sent on to Vanderbilt for the blood transfusion. Then his counts will continue to be monitored until the numbers begin to come up on their own.
As mothers we have a
tendency to feel the need to fix everything. We kiss boo-boos, we place band-aids with a touch of love that only us mothers can do. We give hugs and kisses when our babies are sad and we're able to heal a multitude of things with only our desire to do so. I want so, so badly to fix this; to make it go away so he can feel good again. But I can't. I can't do one thing but hold him and rock him when he's tired. Cuddle him and kiss him when he's sad. I can't "fix" it though. I have to wait on God to do that. So as hard as it is, I'm praying and begging that he's better soon. I'm trying to just be still and KNOW that God is taking care of my little green-eyed boy. :)
One last side note, to all you
Facebook friends that made comments and all of you who may not have commented but offered up prayers, thank you, thank you, thank you SO much! What an amazing blessing
Facebook can be to get the word out and within literal MINUTES so many prayers are already being offered up! And guess what? They are working! Although still not himself, he is up playing a little more this morning and even participated in a run up and down the hallway! He seems to have a little of his energy back. Please keep those prayers coming! With lots of prayers, hopefully his blood work will show next Thursday that he's already on the mend and no trip to
Vandy will be necessary! Thanks for loving my sweet boy! :)
For obvious reasons we've been a little "out of sorts" at our house this past week. With Rhett just not feeling well and taking up nearly every ounce of my energy I feel that my two bigger boys have gone a little neglected. A couple of weeks ago their dad bought them each an umbrella. I've never known them to be so excited about anything! They carried them around and prayed for rain so they'd be able to use their new umbrellas (and used them for sword fights until the rain came. Can't let them go unused, you know!)
And then last week the rain came (both literally and figuratively). Most people dread rainy days but my boys looked to it with promise. It was an opportunity to try something new. An opportunity to use these bright new umbrellas to their full potential. I wish I faced "rainy days" with such optimism. Anyone ever notice how wise our children are and how much we can learn if we just listen and pay attention?
So, when the rain came and they begged to go out I gladly obliged. I watched them forever. Rhett sitting in my lap. I watched my two big boys walk around on the patio holding those prized $3 umbrellas looking at the rain with such delight. It was pure happiness I tell you. For both them and me. I thought then about that saying and knew that somehow I have to learn to dance through this time of rain.
It's hard not knowing what to do for a little one who is feeling so rotten. Those eyes just look at you like you're not doing all you can for them. I wish I could fix it with a brand new umbrella. But this is just not so easy to fix.
After the lows of how Rhett felt in general last week there seemed to be some improvements yesterday. He actually had a good day all day long which hadn't happened since before our first trip to the doctor. He was happy, he played, he squealed, he sang. So much, in fact, that I had a difficult time getting him to go to bed last night. He watched Dancing with the Stars with me and my mom and clapped and squealed and jabbered after every dance. I'm not sure if he was critiquing or what! :)
However, around 1:00 am this morning he was up crying, screaming, congested, coughing, yucky! He was up off and on for the biggest part of the night. It appears he's not much better this morning. We're hopeful that this has nothing to do with the blood counts and this is just a mere yucky cold. (Not that we want him to have a cold--we just don't want it to be an indication of issues with his blood counts--and I'm not even sure that's possible anyway.) We're just ready for him to feel better and be back to his normal self. I miss that little sparkle in his eyes--even if he is up to mischief half the time. ;)
Thank you all for your sweet comments over the past week. For your offers to fix meals. For your offers to watch the older boys. You all are such blessings to us. Please continue to keep him in your prayers and I'll update with results hopefully Thursday night. In the meantime, remember to dance in the rain when you have the chance, or at the very least, watch someone else who is dancing in the rain. You won't be sorry.
