Wow...I can't believe how long it has been since I posted. I guess that once I got the news that Ella's blood work was good for now, I really jumped into the Christmas season. I have been feeling so behind and although I have been faithfully reading everyone's blogs, I have been terrible about commenting because it simply took too much time and thought. But tonight, I conquered one of my biggest obstacles of the week.....I got my Christmas cards put in the mail. Literally, I finished the last envelope at 10pm, threw all three kids in the car and drove to the post office and put them in the box (the cards, not the kids). I did not want to wait one more minute to get them out the door. As it is, some of you who live across country or who are heading out of town for Christmas, probably won't get them in time.....but oh well, I tried!!!
A quick update.....I had Ella's blood drawn again today as a follow up and thankfully her hemoglobin is maintaining. (It was 10.7 and normal is 11). Her platelets are still quite low (37,000) but that is kind of the norm for her. But she is full of energy and getting into all kinds of mischief just like we want. I think she actually transitioned from the chair to the table while standing tonight (while I worked on my cards).
Just as I do for Halloween, I have taken a professional photo of the girls every year at Christmas. I thought it would be fun to post them all so you can see how they have grown.
We went to Ella's doctor appointment today with the oncologist. He said that her bone marrow still looks good and there were no significant leukemia cells in it. He still doesn't know the actual cause of her severe anemia but suspects that it could be something called Myelodysplastic Syndrome You can click on the link to read more as I still need to read up on it as well. But basically it sounds like it is a pre-leukemia type of thing. Her hemoglobin has dropped a little bit but is still at an okay level (9.9) so we are going to continue to watch it very closely. Her platelets are low again also (41,000) but that isn't as unusual for her. She is a bit of a mystery to the doctor in the sense that her marrow still shows signs of making new blood cells, which is a good thing. He said that if she starts to become more transfusion dependent (meaning she will need frequent RBC and platelet transfusions) then we may eventually move to the phase of treating her with chemo. But until that time, we will just keep doing what we have been doing and watching her blood closely. She has been very active and busy making lots of messes, climbing the stairs when nobody is looking, putting cat food in the cat water when the gate is down...etc. All of these things tell me that she is feeling great and that is what I like to see.
So thankfully, we can move forward with Christmas plans and enjoy this month. We will worry about next month....next month. My only concern now is that she keeps her hemoglobin up so continued prayers for that would be much appreciated. Thanks to everyone who keeps us in their thoughts and prayers as we continue on this roller coaster ride with Ella and her blood.
We were suppose to go to the outpatient clinic today for a follow up appointment and I had hoped to get the results of Ella's bone marrow biopsy as well. Yesterday the office called to reschedule our appointment because Ella's primary oncologist was at a conference today. We are now going on Thursday. I told the receptionist that I was hoping to get the results and she said "Doctors call with the results and they only call if they are abnormal". So I am hoping this means that nothing is terribly wrong. Although there is a part of me that is worried that the doctor wants to tell us something in person. So, I have a couple more days to live in ignorant bliss and continue to pray that this is just Ella being her unique self.
I figure that technically it is still fall so it should be okay to post these now. I obviously didn't get pictures of Ella on Thanksgiving as she was still in the hospital but since I already had a "fall" outfit for her, I decided to go find some leaves and take a few pictures anyway. I felt kind of bad because the ground was damp from the morning dew but she didn't seem to mind.
We haven't gotten any calls about her bone marrow results yet but I do have a follow up appointment with the outpatient clinic on Tuesday so maybe they will just give them to us then. Of course I keep hoping that since they didn't call with any urgent results last week, that maybe things are still okay.
No....no results yet. But the procedure went fairly smoothly. When we first walked in the room and the nurses started looking at her arms to decide where to start the IV, I could tell that they were a little perplexed because her arms were already so bruised from being in the hospital. They tried once in the arm (where it bends) with no success and then they were able to get it in her wrist. So the NP comes in to do the biopsy and when the nurse tries to push the sedation medication into the IV, it won't go in. Something happened and now that IV wouldn't work. So they try again on the other arm and just when they were about to give up on that vein, the nurse has success and the doctor says "put the medication in right away....." So we leave the room while they do the aspiration and a few minutes later they come to get us. I guess she never completely went out but enough that they were able to do their thing. The poor girl's arms are just a mess. So now we will wait for the results. The good news is that her Hemoglobin has come up even higher since she left the hospital which means she is producing it. Of course her platelets are lower again but still at an okay level. Sigh.........
Getting weighed before the procedure (22 lbs 10 oz)