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)
Here is that photo that I was talking about in yesterday's post. Look how pale Ella was the day before I finally figured out that I needed to get her blood tested. Such a little trooper!! I would show you the other group pics too but they are for Christmas gifts for certain eyes that read my blog :)
We love this little girl so much!! I can't believe that another month has already passed by. Ella still seems to be feeling good. I think both daddy and I are on high alert worrying about every little thing she does. "Is she still pink?", "How has her energy been today?", "Is she moving around and getting into everything?" For now, the answers to all of these questions are "yes!" We had some pictures done of my kids and their cousin two days before she went into the hospital and I just picked them up last night. I was SHOCKED at how pale she was in the photos. I can't even tell you how guilty it makes me feel that it took me so long to figure out what was going on. I will try to scan one of the photos so you can see just how bad she looked....however, she was totally smiling in all of the pictures. What a trooper!!!
Tomorrow morning I will take her to our local lab and get her blood drawn again for the tenth time this week. Then on Tuesday, we will head to CHOC to get her bone marrow biopsy done. They want her blood counts done the day before so they have them the day of the procedure to make sure her hemoglobin and platelet counts are high enough to do the procedure. I pray they will be so that we can get some answers. We are definitely in "prepare for the worst and hope for the best" mode. Joe and I have started talking over the details of how we will work things out IF she is showing signs of leukemia and we have to start having long hospital stays. The hardest part to figure out is what to do with Abbey and Emma. Thankfully my mom and sister are in town so that should help. I know it seems as if we are being premature in our planning but we just don't want to get hit with everything at once. And the truth is that most of the doctors do feel that she will probably turn to leukemia eventually.
On a positive note, I think she is saying her first official word...."bye, bye". She has been saying something like Ma Ma and Da Da but it doesn't seem to necessarily be directed towards us all the time. But bye bye is always accompanied with a wave of the hand so on this one I am sure. Maybe someday I will be able to catch it on video.
Ella got to come home today. Her hemoglobin count was 10.6 so they let her go. We will go back on Tuesday to the outpatient clinic to do the bone marrow biopsy but at least for now we are home!! It was so nice to get the IV and all of the other monitors taken off and some regular clothes put on. As you can tell from the pictures below, she has definitely gotten back to her old self!! Thanks again everyone for your prayers and I will let you know more as we find things out. It will be time to play the waiting game again as we patiently wait for the results to come in.
Trying on the bunny mask from Grammy Auntie
Playing with the workbench
Making a mess where she shouldn't be (she is really
I am so sorry that it has taken me so long to post an update on Ella. The computers at the hospital are so blocked and even though they gave me codes to get on facebook and my blog, when I would try to post something, it would block me out again. It was just too much work to get any messages out. Just know that I tried. ANYWAY...Ella is doing much better. She is still in the hospital at this point. The morning of the day we took her in to ER her Hb was 3.5 and by that night when they drew blood again, it was down to a 3.0. Thankfully they were expecting us at the ER and we got taken right back to a room. But we had to sit in that room for a couple of hours while they got her IV in, took some blood to make sure of her blood type, wait for the blood to come down etc. etc. By the time we got to a room it was 3am. Ella finally got to sleep in a crib for about 3 1/2 hours until of course they come in to start messing with her. It is true when they say you get no sleep in the hospital!!! Over the last 2 days, they have given her 5 units of blood which brought her numbers up to 8.6 as of this morning. What a difference we saw in our little girl once she got some iron back. She was so perky yesterday that I couldn't get her to nap even though she had only slept a few hours the night before. She would just smile and make faces at every person who walked in the door......of course until they tried to touch her. Then the screaming would start. Then the smiles and faces would come back again after they finished. They have run every blood test to check for viruses but of course those take a few days to get back. Today was nice because they actually disconnected her IV and monitor for a while and let her play on the play mat and take and little cruise around the hospital. She wouldn't keep her mask on and kept trying to climb out of the wagon so I didn't keep her out long. I just went down to the cafeteria and got a salad and soda and came back. Still it was sooo nice to get out of that room. She of course has perfected the parade wave by waving at every person that gave her attention on our adventure. Right after I left her with daddy, the nurse checked her IV and apparently it wasn't working right so they had to take it out and re-do it. Thank God it went smoothly and I guess they put it in her foot this time.
The doctors still haven't figured out what the cause is. Each doctor seems have their own suspicions but haven't been able to confirm it. The possibility still exists that it could be leukemia cells starting to take over in her bone marrow but that can only be confirmed with a bone marrow biopsy which can't be done until her hemoglobin numbers are at least 9.0 and now with the holiday and weekend, the results wouldn't get back right away anyway. One doctor still thinks it is some condition that I can't remember the name of called something like hemapenia but he can't confirm that either. SOOOOO as of tonight when I finally left daddy to stay the night and I came home for a nice turkey dinner and a good night's sleep in my own bed, they are giving her 2 more units of blood tonight and then will do another blood draw in the morning and as long as her numbers are still up, she will get to come home sometime tomorrow and then we will go back to the outpatient clinic next week to do the bone marrow biopsy. Thank you everyone for your thoughts and prayers...they are SOOO appreciated. Here are a few pictures of Ella's metamorphasis over the last few days.
Waiting for mommy to get stuff together to head to the hospital
In the ER
Falling asleep on daddy's shoulder in the ER
Ella's ET toe....she was fascinated with it
The next morning after 2 units of blood
Starting to really get some energy back
Gotta have your Jaxson blankie when you are in the hospital
Okay...I heard back from the doctor. The good news is that there were no leukemia blasts in her blood and her platelets are actually up to 180,000. The really bad news is that her hemoglobin is at 3.5 (11 is minimum for normal). So he wants us to go in to Children's Hospital ER and have her admitted where they will do a RBC transfusion most likely and then observe her for a day or two. Her thinks some kind of virus has caused her body to basically eat her hemoglobin. Please keep her in your prayers that it will be easily resolved.
Ella seems a bit unlike herself lately. She has been waking up between 5 and 5:30 every morning, crying which isn't like her at all. I pick her up and soothe her and she will fall back to sleep.....for a few minutes and then cries out again. I end up having to put her in bed with me and then she will sleep until 8am. Then during the day, she isn't her usual independent, busy self. She is just sort of hanging around on the floor and wants to be held ALOT!! The thing is, that she has no signs of being sick. No fever, no runny nose, no cough....Nothing!! So of course, my mind immediately goes to her blood. Her last blood draw was okay but her Hemoglobin was somewhat low which hasn't been the norm like the low platelets have been. However, the doctor never said anything about it so I figured they weren't too worried. Then my mom mentioned that her gums had no color so I started thinking about the hemoglobin again. According to Zoey's mom Heather, low hemoglobin would account for the lack of energy, paleness and just plain ole "being off". So with a little nudging from Heather, I am going to do what has been in the back of my mind to do......get her blood drawn tomorrow. I can't pretend to ignore it and hope it will go away, it just needs to be done. So, please pray that it is just low hemoglobin and that there won't be any blasts in her blood. I know that it is a definite possibility because the hemoglobin is made in the bone marrow but hopefully it is just another one of Ella's blood anomalies.
Also, has anyone gone through the process of donating to Reece's Rainbow through the PayPal system? If you want to donate to a specific child, will it somewhere along the process in PayPal have a place for you to specify who you want the money to go to? Thanks!!