2:04 PM
Posted In
gabby
,
leukemia
And her numbers did not improve.
Gabby's doctor just called and said that typically, when neutropenia is caused by a virus, there should be some change by a weeks time. Gabby's neutrophils actually got a bit lower.
We have been referred to a hematologist and are waiting for a call to, hopefully, get her in this week so they can do a bone marrow biopsy. I'm terrified.
3:02 PM
Posted In
gabby
,
leukemia
,
white blood cells
I just let out the HUGEST sigh of relieve ever. Gabby's pediatrician called and said she really isn't concerned about Leukemia at this time. When she said that, I told her "You have no idea how happy I am to hear you say that!" Of course, we still have the issue of why her white blood cell count/neutrophils are so low, but just knowing that as of right now we are NOT thinking about Leukemia makes me downright giddy!
She ordered another blood test to be done next week so we can check the levels. As of right now we are assuming that this is a viral issue that is going to clear up. It's still scary and Gabby can still end up in the hospital if she comes down with a fever so we're being cautious and keeping her home until we can figure out what's going on.
Thank you all for your thoughts, prayers, love and support. I think it worked!
9:13 PM
Posted In
gabby
,
leukemia
,
white blood cells
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.
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