I can't believe that I forgot to add this to the post I did last night!! We got Ella's bone marrow biopsy results yesterday and she continues to be in remission. Thank you God!!
And as an update to my 7 days of Ella being hooked up to the IV......it already sucks!!! We are fine when we are out for a walk in the hallway but it is when we are in the room that she goes stir crazy being in her crib all the time. It is just too hard to let her roam free because there are too many things to get tangled up in when we are in the room. While we were out for our walk earlier, we saw a little 3 year old boy who Ella went right up to. It was kind of funny because she kept approaching him and he was very unsure about her and kept backing away and she just kept chasing him around. She was probably at least 6 inches shorter than him so it was kind of comical to see him running away from her. My tough little girl!!!
Round 5 is officially underway as of 5pm today. Ella will be hooked up to the IV receiving chemo for 7 days. I fear that it will be a long 7 days having her hooked up but we have no choice but to push through it. Yes, she is getting chemo for a much longer period this round but thankfully it is a much lower dose than previous rounds so hopefully she will still tolerate it well. As you can see from the picture above, Ella came right back in with a smile on her face. As I pushed her in the stroller from the parking garage, she literally waved at every person we passed. And then when we got back up to the oncology floor, she walked around saying her hellos until the nurse finally made her come back in the room to get checked in and hooked up. I am so thankful that Ella is young enough not to understand exactly what is going on as I am sure the transition to come back in would be so much tougher each time.
Below are a couple of pictures from when we were home. We weren't home long enough to accomplish much but we did at least get to the pumpkin patch but I will post those in another post.
This goofy girl is walking around holding
a diaper (yes, it is clean) under her chin. I
really have no idea why!!
We attended my step sister's wedding this past Saturday
and I was able to get a decent pic of the three girls. Ella
wasn't the most cooperative though.
Trying to get a picture of Emma and Ella after Emma's
soccer game (at which she scored all 3 goals :) but once
Remember a few months ago when a gal at my husband's work did a fundraiser for us? Well, she put on the most amazing event and it was a huge, wonderful success!! She is at it again. Only this time, she is helping a wonderful woman raise money to adopt through our very favorite REECE'S RAINBOW!! Megan is a single lady who has a huge heart for special needs and adoption. She hasn't officially committed to a child yet because she is still working on coming up with the funds you need to commit which is a few thousand dollars. Hence the fundraiser. It is being held in Santa Ana, CA so if you live in the vicinity, please consider attending. IF you are unable to attend, you can still help. Megan has started a blog and she has a chipin button that you can donate money on. It is very simple. Please visit her blog at http://myjourneyoftheheart.blogspot.com/ (for some reason with my blog design, the link isn't highlighted but if you run your cursor over the website, it will show up and you can click it to jump to her blog)
I know many of us follow these beautiful orphans as they find their way to a family. I just love that Megan has the heart to venture out on her own to save one of these precious babies. Even if you can only contribute $5, please do. If you are unable to contribute at all, please offer up prayers that this fundraiser will be a success so we can get another child out of an orphanage.
Today we had to go in to the clinic to do another bone marrow biopsy. They require one to be done at the end of round 4 for the study she is on. It is done using "conscious sedation" which means that she isn't put completely out but she is pretty much motionless and doesn't know what is going on and doesn't feel any pain. In the picture above, she is just coming out of her sedation. The Dr. gave her a little more than usual for some reason and it took her quite a while to wake up. Then it takes her about 30 minutes of flopping about before finally gaining some control of her body. It is actually quite hilarious to watch her as she wakes up. First she just started talking but her body wasn't moving at all. Then she keeps trying to sit up and her head is just flopping around. It literally seems like she is drunk. Of course, I never like my daughter having to have any procedure but let me tell you, it is no big deal at all now that we have the central line in. So for that I am thankful. I used to dread this procedure strictly because of how hard it was to get an IV into her arm. We won't get any results for a couple of days but the doctor doesn't feel there is any hint of anything being wrong in her bone marrow. Of course, I will never let myself get quite that confident when it comes to this horrible disease so please continue to keep Ella in your prayers.
All of her blood counts looked great today so they are planning on us going back in to the hospital on Wednesday to start round 5. This will be our shortest stay at home yet but that is okay since we are just anxious to get it over with. The biggest bummer is that she will be getting chemo for 7 days straight which means being hooked up to the IV the whole time.....which sucks with a toddler!!!
Since our weather has finally cooled down (for California anyway), I had to get all of Ella's "winter" wardrobe washed up and ready to wear. I feel like we have so many new things to choose from which of course means fun new pictures to take. However, I am quickly learning that getting pictures of her isn't very easy anymore since she NEVER stops moving!! Below are a couple of photos in her new leopard attire.
Apparently, Ella has gotten quite good at recovering her blood counts. Well at least she has gotten good once we are OUT of the hospital. Last monday, when we left the hospital, her ANC was 276. Three days later, her ANC was 2,587!!! It had to reach 1000 in order for her to be ready to start the next round of chemo. Normally this has taken her almost 3 weeks to do which meant 3 weeks at home. But this time, it took her three days???? So as of now, we will be doing a bone marrow biopsy on Monday which is protocol at the end of round 4 to make sure she is still in remission and then assuming her numbers are all still good, we will go back in for round 5 on Wednesday. It is hard to believe that we are starting round 5. In some ways, it seems like we just started round 1. We are starting to see the finish line, but just barely. I find that I am more nervous about this bone marrow biopsy than I ever was of any in the past. Before, I always kind of knew what we waiting for and it wasn't much of a surprise. But now that Ella has officially been diagnosed with AML and is in remission, the fear of relapse is always going to be there....probably forever!! But since we can't dwell on that, we will dwell more on the fact that Ella will now most likely be in the hospital for Halloween. Not that she has any idea what she is missing, but I am a little bummed that she won't be in our Halloween night photo. The good news in all of this is that I think the timing may work out better now for us to be home for Thanksgiving and ultimately, finish this whole thing that much sooner.
This photo was taken after Ella's blood draw yesterday. Now that she is walking, she wants to walk EVERYWHERE!! So we spent some time walking around the Medical building and she found this little table to sit at. As always, she enjoyed making faces for mommy's camera.
Just wondering if anyone else can find any food on her actual mouth. I see it almost everywhere else but there.
Where is Ella???
There she is!!! (Oh wait, now there is some on her face)
It was a close call, but the powers that be decided that we could go home today. Ella's numbers have been climbing up the last few days and her hemoglobin and platelets looked great in addition to the fact that she never grew any bacteria in her blood. So even though her ANC was only 270 today, they decided to cut us loose. So round 4 finally comes to a close and now we hope that her numbers don't climb too quickly in order to allow us a decent amount of time at home before starting the next round. We were all packed and ready to go for over an hour but were stuck there waiting for the darn flu shot to come up from the pharmacy as they wanted to give one to her before she left the hospital. But finally, at about 2pm, we were free!!
Daddy was working nearby so we were able to meet for a quick hello as he would get home after she went to bed and have to leave in the morning before she got up. As you can see below, she was very happy to see her daddy!!
Of course, you must spend a little time being a fashionista when you get home as mommy is having a little too much fun buying hats right now. I was a little bummed though because she seems to be slipping back in to her old patterns of yanking the hat off her head almost as quickly as I get it on. I hope she breaks this habit quickly as I just ordered a few colorful knit caps for the Fall/Winter season!!
Of course we couldn't quite sail through this round as easily as last round. This morning, Ella's blood pressure was running low a few times in a row. She hasn't had any fevers but apparently the low blood pressure CAN be a sign of an infection in her blood. So they are being proactive and have given her some extra fluids and started some antibiotics. Her blood pressure has normalized since getting the fluid but now we wait a 24 to 48 hours to make sure that nothing grows in the blood cultures that they took this morning. We have been through the same thing in rounds 1 and 2 due to fevers and nothing materialized so I am praying that this will be the same. The good news is that she is feeling 100% fine and acting her usual self. The bummer is that we are now hooked up to an IV again which as you can imagine, sucks with a toddler!! This video was taken in her new favorite place to be (besides the hospital hallways), the sink in our room. I think she just likes looking at her self in the mirror. Hope you enjoy the video!
Couldn't they be sisters???? The top picture is Ella and the second one is little Arina/Makayla who is being adopted as we speak from across the ocean in the Ukraine. This picture of Ella doesn't show her eyes as well but I had to use this one because of the matching hats. But both girls have the same eye color and skin tone. Oh we can't wait to meet her when the Rugg family gets back with her!!
Today is day 17 in the hospital for this round and we were really hoping to match the last round and go home at 17 days but no such luck. Ella's numbers are low but she hasn't hit that turn around spot yet so it looks like it will still be a few days. We are hanging in there though. The truth is that Ella doesn't seem to mind terribly being there. It is a constant social hour for her.
I found that this was the round that I really started getting to know other families. Some that we have been seeing around the last few rounds and some new ones. This is really an eye opening experience as we learn about so many different types of cancer. It is also yet another chance to show me how truly fortunate we are. Again, I know this sounds strange when we are battling leukemia, but thankfully, with Ella, we haven't seen the true evil that cancer can cause. But some of these other kiddos are SOOO sick and have tumors in their heads that have caused a complete loss of abilities OR caused a disfigurement in the face OR caused the kids to be so sick that they can barely get out of bed. Yes, we have joined yet another club that we never thought we would join. However, this one, unlike the Down syndrome club, is not one that I am glad we have joined. But it is what it is and every day I see patients going about their day the best they can. The other day I saw two teen girls meet up in the hallway and one of them asked the other if they wanted to go hang out in the teen room. As I watched them walk in the door, both of them with IV poles tagging along beside them, it really hit me that we are all definitely in a club together (The IV pole gang). Again, I am so thankful for how well Ella is doing and I truly do see why the nurses say she is the bright spot on the floor. I just pray (and I hope you all will too) that this will continue until the end of our treatment!!
Here are a bunch more pics from the last few days.
Just hanging around....
Trying to run???
Picking up friends in the hallway..I don't think
that her "friend" is too sure about this though
Just being Ella...but check out the new pink
high tops!! They come in purple too (as you will
see in another picture) and can be found at
Babies' R Us
Feeding therapy.....nothing new to report here!
I just took this picture because Ella matches the
train perfectly AND it shows off her purple
Aren't these shoes the cutest? I just ordered them thanks to this post from Laura at Anne and Whitney
Of course after reading her post in which she talks about the great sale that Bugaboo shoes are having, I had to order a couple pair for Ella.
***I am not sure if it is the current wallpaper that I have on my blog or what, but for some reason, when I link things for you to refer to, they don't highlight on my blog. However, if you put your cursor on them, they will show up as an underlined link. Has anyone else ever had this problem?
Sorry that is has been awhile since my last update. Ella has been doing just fine recovering from this round so there hasn't been much to write about. She had to get a red blood transfusion yesterday and her ANC has dropped to 154 so I am hoping that things will be turning around in the next few days so we can get the heck out of here. This round is exactly the same drugs as last round and she was only in the hospital for 17 days. Well, today is day 14 so I am really hoping that we only have 3 or 4 days left. However, I am trying not to let myself get too set on that yet. Here are some random pictures were taken the last few days.
Mommy and Ella being silly
Hmmm....what to do with this sock?????
Since I won't eat any food, might as well eat the sock!!
Last thursday and friday, I took Emma to Disneyland for her birthday. We had a really nice time just the two of us. Below are some pics from their new AMAZING water show. I am hoping to entice some of my far away friends to come see it so that we can meet up :) Pictures don't begin to do it justice!!!