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Thursday, May 27, 2010

Hair Loss.....Boo Hoo!!!

Well, it looks like Ella is going to fall in to the percentage of kiddos who lose their hair with chemo. We had hoped she might follow in Zoey's footsteps and hang on to it, but the last few days, we have seen hair all around....on my shirt, on her bed. Not a lot but enough that I fear it is going. I know that it is expected and all part of the process, but it will definitely feel more like she is sick if she doesn't have any hair. But it will grow back in time, so we will just hold on to that for now. Until then, we will have to use some creative hair accessories to make her look girlie (thanks Kelli for your wise gift of THE MOST ADORABLE HAT AND HEADBAND I HAVE EVER SEEN...pictures to follow someday when Ella needs to wear them)

The last couple of days, it appears that Ella's counts have bottomed out which means that basically she has NO immune system right now. The good news is that the only way to go now....is UP!! She actually had a few "good cells" start to show back up in her blood count today which means that she has started the upward trend....hopefully! (I guess sometimes they can go up and bit and then back down before definitely going upward). For those of you who are unfortunate enough to understand what these numbers mean, yesterday her ANC was O and today her ANC was 10 with a WBC of 2.0 and neutrophil count of 0.5

Ella continues to feel pretty good. Her energy level is decent and she spends a fair amount of time each day cruising around on the floor. But I think her favorite pastime continues to be watching her DVDs.......favorites being Baby Signing Times, Dora and Jana Alayra

Please keep those pictures of your kiddos coming.....Ella's wall is starting to fill up with some VERY adorable faces......Ella gets a kick looking at the pictures (everyone is "ba-ba"...baby) but I think I love looking at them even more!! If you still need our address, email me at adjvollmer@aol.com.

Now for some pics from today.......

Ella sporting some Baby Legs that Jax sent
her....so stylish!!

These are all stuffed animals that she has received
and they ALL get to sleep with her...she is either hugging
and kissing them OR throwing them over the side of
her crib....notice she is making the sign for birdie.

I think she just threw a ball over the fence so
she could make mommy fetch it for the 10th time.
Notice the poster in the background, big sister Abbey
took it to school and had a bunch of people sign it
for Ella!!

Tuesday, May 25, 2010

Monkey In A Cage!!

I can't take credit for these pictures as they were taken the other day by Sweet Pea's Mom. But I loved them so much that I just had to share them with anyone who hasn't found her blog yet.

Ella has been fever free for the past 24 hours so hopefully tonight she will remain that way. I am actually home for the second night in a row as my mom wanted to stay another night. I can't tell you how nice it is to be home for an entire day and be able to get a few things caught up around here!! Ella had to get some Red Blood Cells today as her hemoglobin had dropped below 8.0 which is the magic number that they will do transfusions. This isn't unexpected at all as the chemo kills all of the good blood cells as well as the bad ones. Her immune system has pretty much been wiped out and it is now going to hopefully start building back up!! The good news is that the bone marrow aspiration she had on Sunday showed less than 5% leukemia cells which is perfect. Now the game plan is to continue hitting her with chemo for the next 5 months to be absolutely sure to get every one of those nasty buggers that may be hiding in her body!! I truly believe that all of you out there who are praying for Ella are playing a big part in helping us to win this battle. Please don't stop now!!

The pictures from all of Ella's friends are starting to arrive and we can't wait to get them on her wall. Thank you guys so much as every time I open one, it brings an immediate smile to my face to see those adorable faces.

Free standing!!!

Monday, May 24, 2010

Slight Fever

Of course, tonight I get relief from my mom so I can come home and take Abbey to her end of season soccer party and go to her Middle School Orientation. No sooner do I get home, and call to check in on my mom and Ella and my mom says that Ella has a 101 fever!! They gave her Tylenol and took some blood to check her blood cultures to see if there is any infection anywhere. I believe that they also automatically start her on some wide spectrum antibiotics until they can rule out any infection. The fever responded immediately to the Tylenol and as of bedtime, she was still fever free. She had this happen a couple days into chemo and it resolved itself quickly so hopefully this will be the same. Please pray for Ella to remain fever free!!

Earlier, daddy came by to visit on his way in to work and when I noticed that all 3 of us were wearing brown, I said that we should take a family picture to which my husband groaned!! Not 5 minutes later, the nurse walks in and says "You guys should take a family picture, you are all wearing brown". I needed no more nudging....I jumped off the couch and grabbed my camera!! I also wanted to get a couple pics of Ella and daddy since her shirt is all about daddy!! Poor daddy looks very tired in the pics. He stayed the night at the Ronald McDonald house and apparently they were doing some house repairs right outside his bedroom window so he didn't sleep well. The bummers of working nights!!!

Saturday, May 22, 2010

Friends, Feeding Therapy and a Bath!!

Yesterday was a busy day!!! Ella had her first real bath in her very own hospital bath tub. Then we got another visit from Peanut's Mom and this time Peanut got to join her. They were there for a doctor appointment and I asked the nurse if we would be able to meet them out in the family room on the oncology floor as I didn't want to take Ella down to the lobby (germs) and kids (besides siblings) aren't allowed in our room. The nurses agreed to allow us to meet them there and it was great to finally meet Peanut. Both of the girls were kind of tired and not having too much fun, but us mommies had a great visit. While we were visiting, my friend Deanna (mom of my other daughters' friends) came for a visit and brought me a yummy sandwich from my favorite sub place. Then it was on to Ella's first feeding therapy in the hospital. I can't believe how much easier it is to get the services in here!! Much easier than in the "outside" world. Anyway, Ella seemed to love her therapist and had fun with it. We will see if we get anywhere.

Ella is still feeling great!! Tomorrow she will have another bone marrow biopsy done to see if there is any progession on the leukemia cell battle. Her blood counts are steadily going down but I don't think they anticipate we will hit bottom for another week or so. Then I guess we wait for them to come up enough to make a trip home. Hopefully sooner than later!!!

****I also had a wonderful visit with Sweet Pea's mom but have no pictures to post. Hopefully next time around :) Little Sweet Pea shares the same birthday with Ella as well as the same extra chromosome. She is just one year younger. We can't wait to meet her when Ella is out of the hospital.

Ella and Peanut

Ella with my friend Deanna and her new books

Hmm....what's up with this new chair and spoon???

Looks interesting!!

Very intently listening about what to do with a Cheetoh

First "real" hospital bath. The plastic is actually Press
and Seal that is used to cover her broviac line.

Wednesday, May 19, 2010

The Angel We Are All Praying For!!

One thing I have always been diligent about, is having professional (JC Penney) pictures done of my kids for all the milestones. I have been perfect about doing it with all 3 kids beginning at 6 weeks old, then 4 mos, 6 mos, 9 mos, 12 mos, 18 mos and then each year on their birthday after that. I was almost a month late in doing Ella's 2 year old pictures but thankfully did them a week before she was diagnosed. Boy am I glad that I did because can you imagine how much it would have bothered me to not be able to take her to get those taken for the next 6 months while she has to stay out of public!!! Anyway, I thought it would be nice to post some pics of her besides in the hospital to remind you of the Sweet Ella Grace that we all know and love (okay, maybe I am a little partial)!! I am hoping that these photos will help me on those days when I am sooooo weary from living in a hospital, to remember what we are fighting for!!

Okay...I lied....here are a few from the last few days in the hospital. Here is one of her in her hospital gown right before they took her in to do her broviac line. I just thought she was so cute in her little "dress". It reminds me that I can't wait for her to walk so she can start wearing dresses again.

Here is Ella with Peanut's Mom, Sara, who came to visit us yesterday. I have never met Sara but I so enjoyed her visit. She was so kind to bring me some lunch and help me to pass the time by quickly. I look forward to our next visit!!

Ella practicing her new job as a fashion model for Baby Legs. Isn't she cute!!!

Ella's new play yard. I wanted her to be able to get down on the floor but didn't want her crawling all over the room so I went out and found this at Target. I think it will work perfectly!!
And thank you for the HUGE response about sending pictures for Ella's wall. I cannot wait to start receiving them!!!

Monday, May 17, 2010

Broviac Line Is In!!!!

Sorry...no pictures tonight as I am in the hospital tonight and haven't found a way to do that yet.. Ella's surgery to put her permanent central line in was successful and uneventful. This line will allow access to a vein to be used for administering of drugs as well as for blood draws so that they won't have to do anymore needle sticks....hopefully!!! Poor Ella had to go all day without food. Her surgery was scheduled for 3pm which meant no food since her bedtime bottle the night before. Unfortunately, the surgery didn't actually occur until 5pm so her first bottle of the day was actually dinner!! I was waiting in the waiting room when the anesthesiologist came to get me. I had to laugh when we were walking back to recovery and I asked him if she was awake yet...he said "OH YES SHE IS"!!! Apparently, she was causing quite a raucous back there. That's my girl!!! She seems to have recovered fairly quickly and aside from being tired and hungry, looks pretty good! She is soundly sleeping now and I am praying that she stays that way all night!!

I have a request of all of Ella's little friends. I was thinking that it would be fun to decorate Ella's hospital room with pics of her friends. I am hoping that everyone could send me a picture of their little kiddos. If you are interested, please email me at adjvollmer@aol.com so I can email you my address (I don't have the guts to post it on here....sorry!). Thanks for your help and thanks for all of your continued prayers and comments....I just love them!!

A Wonderful Day!!

I got back to my house pretty late tonight so this will be a quick update but I just had to tell about our wonderful day today. First of all, Ella is doing so much better!! I wouldn't say that she is completely back to herself but she is getting there. She had more energy and started climbing around a little. She had to get a platelet transfusion because her platelets were pretty low (25,000) and since she is scheduled for her central line insertion (broviac line) tomorrow afternoon, they need her platelets to be at least 75,000. As of tonights blood draw, they were 140,000 but they will check again in the morning to see if they stay up overnight. She will have to be put under anesthesia for this procedure so I pray that it is quick and easy so she won't have any lingering effects of her respiratory system like this past week. But everyone says that life will be much easier with the broviac line in and therefore we are looking forward to getting it done.

More importantly, we had some WONDERFUL visits today. First of all, I had a surprise visit from some local friends of ours, Greg and Margie. Then Zoey's mom, Heather came by and brought many gifts. Ella now has a beautiful pink car to cruise the hospital in as well as two new blankets and many pairs of baby legs. She will be quite stylish!! Then Joel and his family showed up from Canada. I can't tell you what a joy it was to meet this family that I have never met but feel like I know so well. Joel is even cuter in person and he and Ella seemed to have an immediate bond. There really is nothing quite like the bond we have with our friends in blogland!!! To finish off our evening, my dad and Barbara, came to visit us and then Barbara took the night shift so I could come home as Joe is back to work for the next 4 days.

Please pray for a smooth and simple procedure for Ella tomorrow. Here are some pics from the day.

Ella standing up for the first time in a week
enjoying her view out the window.

This very special card arrived in the mail yesterday
for Ella....it is from a fairly new blog friend...little
Colin and his mom and dad.

Heather and Ella with her new sporty
mode of transportation.

Joel and his wonderful family

Ella immediately reached over to give Joel a hug!!

And then he loved her back!!

Blanket brought by Heather but we were told that it
was made by Kristen's mom which makes it extra
special as Kristen is a cancer warrior also!!

Another beautiful blanket that was made by Zoey's family.

Ella enjoying sitting in the window sill....told you she
is starting to climb again!!

Oops...she fell in the crack!!

Ella with Grandma and Papa

Saturday, May 15, 2010

Week One.......Done!!!

I have been told by my friends that have walked this road ahead of us that the first two weeks of treatment are the hardest and thankfully, we have made it to the halfway point. We are definitely starting to see some improvement in Ella. She is certainly not herself yet but at least she is a little more alert. She still doesn't want to spend much time sitting up and hasn't started talking again after having that tube shoved down her throat for 18 hours. It's kind of weird because she doesn't seem to want to put herself into the sitting position and then when she is, she seems kind of wobbly. I am not sure if she is still feeling the effects of all the drugs she was on or if she is a little nauseous or if she is just weak and tired. Maybe a combination of all the above. Daddy has been with her since last night and said she seems a little more lively today but he is just enjoying his snuggle time with her right now. I will be heading in soon so will see for myself. We have some exciting visitors coming tomorrow..... Zoey's mom, Heather will be coming down from Camarillo and then all the way from Canada.......Joel and his family. We also expect a visit from an old co-worker of mine who happens to have a son with Ds tonight and then tomorrow hopefully some grandparent visits. We love visitors as it helps to pass the days away.

Fyi.....for those of you with blog readers, Rachel pointed out to me that if I do a post from the hospital computer, it doesn't show up on her blog reader. Not sure why but I guess that means that if you are looking for an update, you might just have to go directly to my blog to see if there is one.....thanks Rachel for the heads up!!

Here are some pics from yesterday that show Ella with a little more life in her. Thanks once again for all the prayers. Did you know that not only do we have a ton of prayer warriors praying for Ella here in the U.S., but we also have people praying in Peru and India. How cool is that!!! Take that leukemia!!! If you live in another country that I haven't mentioned....please speak up!!

Ella with her treasured DVD player!!

A brief attempt at getting on to her knees

One of three naps today. Look at how messed up her face
is from the bi-pap mask and all the tape from the nasal

Ella's infant teacher Rosario and her husband.

Sitting up on our bed/couch.

Close-up on her poor face.

Big sisters Abbey and Emma visiting.

All tuckered out!!

Thursday, May 13, 2010

Finally Some Improvement!!

****fyi....to those that are checking my blog and may try to call or text friday morning, my cell phone is dead and the charger is sitting on my counter at home...oops!! So please don't get stressed if you don't get a hold of me!!*****

Tonight has definitely been better. I got to the hospital around 4pm and Ella was sleeping on daddy's shoulder. She still had the chest tube in but somehow was still ok sleeping that way. The cardiologist had attempted to take the chest tube out earlier but had met with some resistance and didn't want to take a chance on pulling it out and having there be a problem. So he wanted the thoracic-cardiac surgeon to come check it out. He finally showed up around 5:30pm and proceeded to pull it right out with her sitting on my lap. He said that sometimes if they are knocked out when they insert the tube, they are very relaxed and by the time he went to pull it out, she had tensed up her muscle and more than likely this was the resistance they felt. So thankfully that tube is out now!!! They took her off the bi-pap maching (big mask) early his afternoon and now she is just left with the nasal cannula and a feeding tube down her nose. Earlier, she was still trying to pull at the things in her nose and I was literally having to hold her arms down..which she hated, but then she suddenly relaxed in her bed and proceeded to fall asleep for 4 hours. When she woke up, she seemed very relaxed and has just been lying there trying to decide if she wants to go back to sleep or not.

For bigger news....the first round of chemo is officially complete. All 96 hours of it has run through her veins. Now we just sit here and wait for it to kill off all of the blood cells and watch her immunitydisappear along with it. Eventually she should start remaking her good blood cells and when she gets them high enough....we will get to go home for a short bit (hopefully). So for the next 3 weeks or so, we will be hanging here at CHOC so please, if you live in the vicinity, feel free to keep me company....ONLY HEALTHY PEOPLE MAY APPLY!!!!

Tomorrow we should move back down to the oncology floor. They will do one more echo of her heart just to make sure that the fluid is still gone and then I am praying that she can do away with the oxygen and start to be our sweet little Ella again!

No pictures tonight as I am at the hospital but I am hoping to get some of her sitting up tomorrow.

Wednesday, May 12, 2010

This Is Tough!!!

I sure never would have thought that I would be saying the words....."I can't wait until we can get back to doing JUST the chemo". But right now that is how I feel!! All of this other crap seems so much harder for Ella to take. About 11am this morning, they extubated her (for you non-medical people...took the breathing tube out). She had this tube in for almost 24 hours and it really irritates your upper respiratory system. Well the swelling combined with Ella's small structures due to having Ds, have been making it very difficult for Ella to get her breathing back under control. She sounds very course and at times her oxygen levels would get too low. They decided she needed some extra oxygen so put a nasal cannula in. I thought "wow, now Ella gets to be like many of her other friends with Ds". But Ella was having none of it!!! We would put it in her nose, she would pull it out...in, out, in out. Okay, this game is getting very old!! Next they went to a little mask, you know, the kind they have on airplanes.....Yeah right!!! Like that was going to stay on. But she needed some sort of oxygen because if we let her be, her numbers would start to drop and that wasn't good for her. They finally decided that she would have to go on the Bi-pap machine which has a BIGGER mask that really attaches to your head and actually forces air into your mouth. SHE... HATED... THIS... THING!!! We literally had to stand there and hold her arms away from it until she settled down. Then she would startle herself, wake back up and start grabbing at it again!! Then we would hold her hands until she settled down again. This was going to be a VERY long day!!! They tried a few different sedations. Do you think those worked on our sweet little girl? Nope...not at all!! I think the only time she would finally fall asleep was after the Benadryl. So here she is with an irritated throat, air being forced into her face (think of a fan constantly blowing on your face at close range) and last but not least a tube sticking out of your chest, that hurts!! It's no wonder that she was completely irritated all day. The plan is that they will most likely take the chest tube out tomorrow if no more fluid accumulates around her heart and then hopefully overnight she will get her oxygen under control and be able to take the mask off. I believe that the world will once again be right for her if she could just get rid of those two things.

I am sure that tonight is going to be a tough night, especially if she keeps waking up and getting agitated. So where is this Mother of the Year???? At home!! Yes, I left daddy to care for the little Angel tonight. Afterall, it was his turn. Does that make me a bad mom and wife? I hope not. Please, please, please pray for some comfort for Ella tonight. Pray that we can get all of these extra tubes out so we can leave the PICU and return back down to the oncology floor and get on with this first round of chemo so we can get Ella's body cancer free!!!

Here are some pics from yesterday that I couldn't post away from home as well as some from today. Hope they aren't too graphic for those of you who are queasy. Thanks once again for all of the great support. Every time I log on and check email, I am truly blown away by the love that you all are showing us during this very tough time.

Happy with just having chemo...about an hour
before all hell broke loose yesterday!!

After the chest tube was put in and still intubated

Close-up of all the tubes

Now wouldn't you be uncomfortable if you had this big
mask on your face, blowing air???