Scared...
9:13 PM Posted In gabby , leukemia , white blood cells 10 Comments »
This morning Gabby had a routine blood draw. I had a bad feeling going in...not sure why. I am pretty sure it had a little something to do with mother's intuition.
As I was getting my nails done this evening, the results were automatically forwarded to my email which my iPhone immediately alerted me of. I sat there reading Gabby's lab results and I began to panic as Ken (the best manicurist around) buffed and polished my fingernails. I think he could tell something was up. I'm fairly certain I started to sweat. I didn't understand the numbers but I could definitely tell something was not right and all I could think about was Leukemia.
Children with Down syndrome have a 1 in 95 chance of developing this devastating disease. This, coupled with the fact that Gabby is ALWAYS sick with some kind of cold, had me on absolute edge.
I came home and immediately called my friend, Jenny, who is in the process of learning ALL about this stuff in med school. She made me feel much better and told me that usually with Leukemia, your white blood cells are very high, while Gabby's were actually quite low. This information didn't completely pacify me but at least I got the "L" word out of my brain for a few minutes. She did say, however, that it was evident that Gabby had Neutrophenia or a low count of neutrophil (cells used to fight off infection in the body)
The new question is/was "WHAT is causing this Neutrophenia?" While I googled my little heart away, I also posted a shout out on Facebook asking if anyone else out there in the Ds community had experienced this. No one had. Google was my only reliable source at the time considering Gabby's doctor had left for the day and no one was available to go over lab results with me. It should be ILLEGAL for abnormal results to be sent to a mother once the pediatrician is no longer available for consult. It was torture but there were many things I was finding including, Hyperspleanism, folic acid and B12 deficiency's, congenital issues with the disease, etc. All of these were MUCH better than the dreaded "L." I was feeling okay about the results until my brother-in-law finally called me back...
He explained that the white blood cells can, in fact, be low in the presence of leukemia. My high was suddenly fading. He didn't sugar coat anything, which I appreciated but basically he said we're concerned with two things: 1.) Sometimes, a viral infection (which are pretty common with the Gabster) can cause a Viral Suppression of white blood cells. This makes a little bit of sense being that Gabby has been battling a little cold for a good part of three or four weeks but it wasn't that bad of a cold, ya know? or 2.) Leukemia.
BAM! Just like that, he said it. I explained my confusion about thinking that the white blood cells had to be elevated with Leukemia but he assured me that wasn't so. However, he did say that typically with Leukemia, other things would be low as well such as her hematocrite and hemoglobin levels (which are not low but are on the lower level of normal.)
So at this point, I am just not sure what to think. I called her pediatrician and left a message with her to call me back as soon as possible and I also sent her an email. She is usually very good about getting back to me so I expect to hear from her tomorrow, for sure.
In the meantime, my brother-in-law informed me that because Gabby's neutrophils are so low, if she were to come down with a fever, we are to take her to emergency immediately. She has basically no defense against infection right now so things can get ugly quickly.
It's currently 1:15am and I am just waiting for her to wake up with a blazing fever. I am so paranoid. I have googled and googled and GOOGLED for the better part of seven hours. A lot of information is pointing to Leukemia and a lot of information is pointing in other directions. I wish her chances of getting this nasty disease weren't so high so I could relax but I guess it's my job as "mom" to freak out, right?
I thought it would be good to blog about this, and keep everyone in the loop. I hate to be all "doom and gloom" but this is what it is and I have to be real. I really REALLY truly hope that this is not Leukemia and we can solve it easily. We could use some positive t's and p's if you've got some.
I will update tomorrow once I hear from her doctor.
As I was getting my nails done this evening, the results were automatically forwarded to my email which my iPhone immediately alerted me of. I sat there reading Gabby's lab results and I began to panic as Ken (the best manicurist around) buffed and polished my fingernails. I think he could tell something was up. I'm fairly certain I started to sweat. I didn't understand the numbers but I could definitely tell something was not right and all I could think about was Leukemia.
Children with Down syndrome have a 1 in 95 chance of developing this devastating disease. This, coupled with the fact that Gabby is ALWAYS sick with some kind of cold, had me on absolute edge.
I came home and immediately called my friend, Jenny, who is in the process of learning ALL about this stuff in med school. She made me feel much better and told me that usually with Leukemia, your white blood cells are very high, while Gabby's were actually quite low. This information didn't completely pacify me but at least I got the "L" word out of my brain for a few minutes. She did say, however, that it was evident that Gabby had Neutrophenia or a low count of neutrophil (cells used to fight off infection in the body)
The new question is/was "WHAT is causing this Neutrophenia?" While I googled my little heart away, I also posted a shout out on Facebook asking if anyone else out there in the Ds community had experienced this. No one had. Google was my only reliable source at the time considering Gabby's doctor had left for the day and no one was available to go over lab results with me. It should be ILLEGAL for abnormal results to be sent to a mother once the pediatrician is no longer available for consult. It was torture but there were many things I was finding including, Hyperspleanism, folic acid and B12 deficiency's, congenital issues with the disease, etc. All of these were MUCH better than the dreaded "L." I was feeling okay about the results until my brother-in-law finally called me back...
He explained that the white blood cells can, in fact, be low in the presence of leukemia. My high was suddenly fading. He didn't sugar coat anything, which I appreciated but basically he said we're concerned with two things: 1.) Sometimes, a viral infection (which are pretty common with the Gabster) can cause a Viral Suppression of white blood cells. This makes a little bit of sense being that Gabby has been battling a little cold for a good part of three or four weeks but it wasn't that bad of a cold, ya know? or 2.) Leukemia.
BAM! Just like that, he said it. I explained my confusion about thinking that the white blood cells had to be elevated with Leukemia but he assured me that wasn't so. However, he did say that typically with Leukemia, other things would be low as well such as her hematocrite and hemoglobin levels (which are not low but are on the lower level of normal.)
So at this point, I am just not sure what to think. I called her pediatrician and left a message with her to call me back as soon as possible and I also sent her an email. She is usually very good about getting back to me so I expect to hear from her tomorrow, for sure.
In the meantime, my brother-in-law informed me that because Gabby's neutrophils are so low, if she were to come down with a fever, we are to take her to emergency immediately. She has basically no defense against infection right now so things can get ugly quickly.
It's currently 1:15am and I am just waiting for her to wake up with a blazing fever. I am so paranoid. I have googled and googled and GOOGLED for the better part of seven hours. A lot of information is pointing to Leukemia and a lot of information is pointing in other directions. I wish her chances of getting this nasty disease weren't so high so I could relax but I guess it's my job as "mom" to freak out, right?
I thought it would be good to blog about this, and keep everyone in the loop. I hate to be all "doom and gloom" but this is what it is and I have to be real. I really REALLY truly hope that this is not Leukemia and we can solve it easily. We could use some positive t's and p's if you've got some.
I will update tomorrow once I hear from her doctor.
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10 comments:
Hey I will try and call you later for an update......I know you are the queen of googling health problems, but i hope it is not freaking you out unnecessarily. I'm worried about my friend1 I wish i could be there to distract you from googling.....Whatever the outcome, we will all be there for you in whatever way possible. love you.
Woah, I can't even imagine how you're getting through this time! I am praying that it isn't leukemia and that it is viral and that Gabby will develop a strong immune. Sending tight big hugs!
Well,you know I know ALL about leukemia.Unfortunately.With that said I will say this ...you need to look at all the factors in the blood.Certainly not just the white count.What was her platelet count and what was her hemoglobin?Those two play a huge,huge roll.The stand alone low white count,is really only indicative of just that,a low white count.
One thing,little known fact to some,even the doctors,is that some Down syndrome children can have ,and alot do,because I know several,low white counts.And,the low white doesn't interfere with anything.Even their ability to fight off infection.Just another quirky little curve ball our little loves like to throw out there.
If you have any questions,please email me.While I am no expert,my experience with Miss Z and her fight against this disease has given me more knowledge than I care to have.
Breathe sweet momma.Breathe.
Im so sorry to hear about everything. I hope you have good news today. :(
OMG...hope you get some real answers! Sorry, I missed your FB shout out. Lillian has low white blood cell counts too...but apparently it's OK since nothing else is out of balance. Her ped said they were low but not scary low.
I hope Gabby and YOU get answers from the Ped soon!
Oh sweet Sheree, I cannot even imagine the anxiety you are feeling right now. I will be praying for Miss Gabby and am hopeful you will get comforting news from your pedi soon. ((HUGS))
I am keeping Gabby, you and hubby in my prayers. Please keep us update so we know how to pray.
btw: I don't know if you remember me, but were on the Feb 2005 board together.
Praying for Gabby!!!! Update us when you can!
Praying for you and Gabby. Every blood draw terrifies me. We haven't addressed the "L" word personally, but Micah's labs are always a little warped. And now since his last hospitalization (Toxic Shock, almost died) I'm going to be a basket case if he gets a runny nose!
Went to bed and woke up with Gabby on my mind... I'm waiting on pins and needles around here for some positive (as in GOOD) news for Miss Gabby. I have heard that our kids can have screwy blood test results that don't mean too much. We'll just have to keep praying for a miracle... and not settle for less. {{HUGS}}
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