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Sunday, October 31, 2010

Day 65

Ella is moody today. She hasn’t been eating much and she is down to 39 lbs. I made her 3 different things for lunch today and all of them tasted bad or needed a side dish that we didn’t have in the house. I even tried purple pancakes and that didn’t work- because we didn’t have any sausage. So she melted down, the dog started barking, and Josh chimed in with a “Mom, Mom, Mom, Mom, Mom”……I’m sure you all know how it goes. I told everyone- including the dog that I needed a time out so no one could talk to me for 5 minutes. At least that made Ella laugh.
We had a blood drive at church today and it was packed. Thank you to everyone that donated. I attempted to donate but, my blood pressure was too high. This made me feel like crap. So many people were there donating, and some because Steve and I asked- and I couldn’t. I totally felt like I failed Ella. My brain knows that I didn’t- but my heart feels like I let her down. I don’t like failing at anything- even if it is just giving blood. Another lesson for me on giving up control. I love the chorus in one of the songs for today “If you lead me Lord I will follow, where you lead me Lord I will go.” Invictacion Fountain by Violet Burning. Good tune if you don’t know it.

I love worship at church. When we first started going, I didn’t know many of the songs, or people, so worship felt awkward. I am one of those who secretly wanted to wave her hands in the air and sing at the top of her lungs and yell “Amen!”. So basically- I can’t get over myself and what everyone around me might think- which sucks. But I love the music, and usually to the dismay of the people around me- I do sing at the top of my lungs now. But, it is more than the singing that I like. It’s the interactions of your family during that time. There is the family that you are connected to by blood or marriage, your friends who have become part of your family, and your church family. During the first few minutes before and during worship- I like to watch my church family. I love how everyone hugs each other- stops to say hello and I really love when we greet everyone in the morning. Something about smiling at someone that you may or may not know and making them feel welcome- like they are family, just makes my day.

Happy Halloween. I hope your kiddos have fun today.


Saturday, October 30, 2010

Day 64


Ella and Emma

Sara, Emma and Ella

Ella and Josh had a fun day today. Josh had Karate, they he and I went out for breakfast. Ella got to play with Auntie Carrie, then their cousins came around lunch to spend the afternoon.
Ella is still handling this last dose like a champ. She played so hard today and had a blast with her cousins.

I feel so refreshed after my date last night with Steve. A few martinis didn't hurt either! Time to connect and just zone out together is important.

Blood drive tomorrow at church. If your donating drink lots of fluids and eat breakfast!


Friday, October 29, 2010

Day 63

Well, I wasn't sure how today would go, but Ella did awesome! I took her to our usual spot for pizza at lunch- and she danced for the small lunch crowed at the mall when "her song" came on. Another mom looked at me like "Oh, how cute!" and I couldn't help but think to myself  "You have no idea!" I totally welled up with tears as everyone watched her and she stood there dancing with her eyes closed- like she didn't have a care in the world! We went to see Josh in his Halloween Parade today and Steve and I even squeaked in dinner together. So, good day.
We am so grateful to everyone who signed up to give blood. Thank you form the bottom of our hearts! Have a good weekend everyone.

Thursday, October 28, 2010

Day 62-Clinic

Taken with my cell phone- so it's not great....
Today Ella did great. The nurses and Doc even commented that they have never heard her talk as much as they did today. She did fine until she had to get her flu shot at the end. They tried to sneak up on her- which was hard considering they had to do it in her thigh, and she got mad! She just started squirming and yelling "Mama". I felt terrible. Her reward though was getting to go to Build A Bear with her Aunt Carrie after treatment. I think we will need to build a new closet for bear clothes soon! She was sore tonight, but feel asleep as soon as we put her to bed. She took her anti-nausea medication, so now we cross our fingers and hope tomorrow goes well.

I had to have a talk with myself today about fear. Reminding myself that even though I am afraid of what is going to happen, that I can not let it zap all my happiness and energy for the next few months. I internalize my stress too- so, that would not be good for me. It would also make it harder on Ella and my family. So when I was at the grocery store at 9:30 tonight wondering why I felt like a zombie....I realize my fear today sucked all the energy out of my body. The irony of it is that I have always tried to make sure that fear does not get in the way of my happiness. Lucky for me skydiving wouldn't make me happy, but if I am faced with something I am trying to make a decision on I always TRY to take fear out of the equation. So, I am going to try harder not to let fear be in charge of my days, weeks and months.

 I am an emotional woman. Talking about my feelings is 2nd nature to me. Someone commented to me that I should keep some things more personal, and I told them I have nothing to hide. If I don't wear my heart on my sleeve, how will anyone know where my heart lies?

Nighty Night.

Wednesday, October 27, 2010

Day 62- Winds of Change

Wind blowing and clouds moving!
It has been blowing here for the past 2 days. I know, it's Chicago, but it really is windy! We have had unseasonably nice warm weather, but my sinus tell me that's about to change. I know that that is not all that is going to change. Tomorrow starts the next round of Chemo for Ella- 58days. This time around will be harder- and the 58 days after that even worse. I feel like I sucked ever second of joy out of life with her the past couple of days, just because I know what is coming up. This happy, laughing, energetic and smiling 4yr. old is about to become the opposite of all that. Tonight she told Steve "Tomorrow I am not going to be happy!" She told me she was going to stay home all day and not going to go anywhere tomorrow (now imagine a foot stomp and crossed arms).
So, please pray that she will make it thru the next 116 days. That her body will hold up to the treatment, that she wont get any fevers, and her counts stay good.
Steve and I both got massages tonight...Ahhh, calm night.
Chemo tomorrow.......

Tuesday, October 26, 2010

Day-61 Playday!

Today was a major play date day for Ella. She got to play with Rachel, Morgie and Sara today- and she was still chatty tonight at 9pm when I was trying to get her to go to sleep. None of this was planned, but I thought since these are her last few days before her next phase, that I would let her play.
I know I can write about it, but it makes me sad that so few people get to see this happy girl. When we go to Clinic, the doctors think she can't even talk- select muteness. She never says hi to them and rarely even acknowledges them with a glance. It has started to spread to our friends too. If it is not someone that she sees on a daily basis, then forget it. I just think she is a bit overwhelmed- and who can blame her for that. I just wish everyone could see this smart, happy 4yr. old that I get to see.
Ella (Left) Morgan(Middle) and Rachel(Right)
Hopeing tomorrow will be a fun day too.

Monday, October 25, 2010


Ella is home! She gave me a really big hug when I saw her, which is unusual for her, but I love it. She had lots of fun at Grandma and Grandpas house and got to do everything she loves to do. Tonight she is tired, she has been having a meltdown for 15minutes now. it will be bedtime for her soon.
I finally found a site with other parents who have ALL kids. It is comforting to know that other people ask the same questions that I do and have the same thoughts.
I am dreading Thursday, because I know that will be the end of her 2 weeks off, and the beginning of the rough stuff. I'm kinda glad she doesn't know just how rough it is going to be. Again- I can't mentally grasp the fact that she is in remission but has the toughest part of her treatment to go through still.
Everyone stay dry the rain storms coming up.

Sunday, October 24, 2010

Day 59

Our good friend George filmed this PSA video of Steve and I asking people to donate blood. Here it is if you would like to see it.
Let us know what you think!

Ella is having a great time in Wisconsin, and taking her meds like a champ for Grandma and Grandpa!

Saturday, October 23, 2010

Day 58

Ella is doing so well. She got to go to Wisconsin to play with her cousins and sleep over at Grandma and Grandpa's house tonight. She packed 2 bags full of Build A Bear animals and clothes to take with her. I felt bad that Grandpa had to lug it all outside in a heavy rain, but he totally didn't mind. She let me take a few quick shots before she left.

I wouldn't say I was a control freak, but I must have control issues. I know she is in perfectly good hands, but I still cried when she left today and spent most of the day wondering what she was doing, and if she felt okay. Not having control of her environment and what she is doing- is scary. When I called to see how she was, they said she played and ate and I could hear hear asking Grandma to play more in the I know she is fine, but it is just hard.
Steve and Josh got to to to Chicago to the Museum of Science and Industry today and hang out. They had a lot of fun. I got to go to the dentist for a tooth/gum infection...YEA!
Looking forward to being able to go to church tomorrow. Listening to service on line isn't the same.

Friday, October 22, 2010

Day 57

Amazing how these 2 ropes hanging off a tree can create so much fun! Again- I admire kids!
Today was great. We went to the pumpkin farm as a family today and stayed for about 3 hours. Ella had so much energy, I think she did the maze 4 times. Goeberts has the BEST Peanut Butter Cookies! That helped with my energy levels!  Josh and Ella picked out a huge lopsided pumpkin, watched the dinosaur eat pumpkins, and fed the animals. It was really nice to be out together. We ran into a few people that we know and we just had a nice fun normal day.
Steve's parents are going to take Ella to Wisconsin for a few days. This will be the last time she is able to go for a while, so we are all taking advantage of it. It will be good to have some time with just Josh too. The entire time they played today he was by her side, holding her hand, or had his arm around her. He has such an immense heart.
Have a beautiful Weekend.

Thursday, October 21, 2010


I broke my rules today. I really try to take one day at a time, but I was trying to organize Ella's paperwork into binders and looking things over and I got, well cranky. I started thinking too much into the future. I read through all the drugs she has to be on during her more intense phase of chemo, and it put me in a bad mood.
It started off as a good day. Had a pedi- good. Had the afternoon to myself- good. Ordered a new vacuum- good. Ate ice cream- very good. Then after dinner I looked at her paperwork- bad. She is doing SO well right now. She is talking all the time. We read a 120 page chapter book this morning and she couldn't stop talking about it. She played with Grandma and Grandpa all afternoon and smiled! All Good! I am just frustrated because I know how bad it is going to get, and she has no clue. Maybe it is better that she doesn't know? That way she can really do one day at a time- and not get cranky like her mama.
Right now she is all snuggled up in her bed- under like a million blankets! Every blanket she gets she adds to her collection on her bed. Sometimes I sneak in at night and take a few off so she doesn't get to hot. Most nights she kicks them off herself.
Her hair loss has really slowed down- which is good. most of the loss is towards the back so she can't see it as much as we can. She still puts in her headbands and barrettes everyday to match her outfits.
Thanks for letting me vent.

Wednesday, October 20, 2010

Day 55

Ever feel like you really want to say something, but don't know what to say? It is interesting to watch people and see how they react to you. Another Cancer mom commented to me very early on that the one thing you find out real quick is who your real friends are. Those of you who are my close friends- don't start panicking. I am not going to look at our friendships and state that anyone hasn't been a good friend, but it has made me wonder if I have been a good enough friend. One friend had kids before me, and one did have medical issues. Ella having Cancer has made me wonder if I was there for her enough. I'm sure I had no idea what to say. Still being in my 20's and no kids of my own, I am sure I should have said more when  I probably said nothing. I ran into someone today that I know, and they looked at me, smiled and walked away. It made me wonder if they just didn't know what to say. On the other hand, there are a few people that I know- not well, who have bent over backward for us in the past few weeks. I think when something like this happens, you get to see who your real friends are and who has "real friend" potential. As we get older, I think it gets harder to make friends. In that aspect- kids are lucky.
A few friends have commented that they don't feel like they are doing enough- or that they are not being a good friend. To you my friends, I say the fact that you even think that- shows that you care. Nothing further is really necessary.  Steve and I are eternally grateful for every little card, email, and prayer for Ella and for our family- so thank you all.
Ella wanted her face painted today- so we did a kitty. We got outside for a bit and we walked around at the Huntley Mall. Her favorite lunch now is the cheese pizza at that mall- no other pizza- just that one. So it is becoming a weekly spot for us. As long as the weather stays this nice, I don't mind at all.

P.S. I am sorry my friend if I didn't do enough for you.

Tuesday, October 19, 2010

Day 54

I was just thinking about her in this Super Girl outfit, so I thought I would share. Her brother had a Superman birthday party last year, so we bought them matching costumes. Josh stood still for 1 picture then flew off around the house, but Ella was in a picture mood- so we took advantage of this rare occasion.
I wonder if it is unusual for her to not want to talk about why she is sick. She really doesn't ask any questions, and when I ask her she doesn't really want to say anything about it.
Josh has started having nightmares that involve hospitals and being trapped- I do not take this as a good sign. I know how much he loves her and I try to re-assure him that everything will be okay, but I know it is not enough. How can it be? Most days I'm trying to reassure myself.

Ella started getting freckles right before this happened. Which, I think is the cutest thing ever! Especially with her red hair, but I'm bias. Anyway, when I was a kid, my mom told me they were angel kisses. I can't help but think the angels knew that she was going to need some extra love and started kissing her. They are tiny and hard to see, but they are there- all over her nose and right under her eyes.
She is having another wonderful day today, so I am just very grateful today. I feel like it is the calm before the storm.
Thank you for reading.


Monday, October 18, 2010

Day 53

My girl is so awesome. She is having so many great days, I almost feel guilty even writing the blog! Today we played, read books, worked on some school stuff, and laughed. Josh had karate, opened presents from Nana, and played.
On Sunday Jes and I ran the Pumpkin Stampede to benefit Cancer. She is 13 and kicks my butt in a 5K every time!
On a serious note, there is a blood drive coming up at West Ridge Community Church on October 31st. Please consider donating blood. Ella has already had to have 3 blood transfusions, and without blood donations- she wouldn't be here. Please consider signing up.  If you can't do it then please visit your local  blood donation center.
Thank you.

Saturday, October 16, 2010

Day 51-Fun Fall Day..okay, and Day 52!

I am so grateful for these fun normal days!  We went out for lunch- as a family, put up the bounce house, invited the neighborhood kids over, and made a big leaf pile in the yard. Josh and Ella stayed outside till 6pm tonight.

Good day for everyone. Ella laughed and ran and played all day. My cup runeth over!

Friday, October 15, 2010


Ella is having a good day. She spent the day making flowers barrettes for her and her friends hair today.
She really didn't want to smile!

So, I had to take our 14 yr. old cat into the vet Wednesday for his yearly check up. I went by myself and Ella stayed home with Grandma and Grandpa. He hasn't had any health problem since we got him and has been a really good companion for me since before I met Steve.
They checked his weight and the vet did his exam. He started talking about how they see Thyroid problems in older cats, and then he started talking about doing blood tests to check his levels and to test for other possibilities. I don't think I heard a thing after he said blood tests. My mind just started racing...blood tests, blood tests, BLOOD TESTS!!!!! Tears just started streaming out of my eyes- I felt a little sorry for my vet. He had no idea about Ella or the myriad of blood tests we have gone through in the past 2 months.  I apologized and explained quickly that even though I love my cat, that wasn't the only reason behind my tears. Poor guy. He just handed me a box of Kleenex.
They ran the blood tests and Cole does have Hyperthyroidism. So now he needs medication 2 x a day. So, I am putting them on the same schedule. Maybe it will be good for Ella to see that she isn't the only one that has to take medicine- or maybe she will learn some good maneuvers on how to escape when its med time.

Cole, he didn't want to smile either.

I questioned the Doctor yesterday on Ella being in Remission. He said she is in Remission because they can not longer see the Leukemia in her blood. This is such a huge disconnect for me. I think of Remission as no longer on Chemo. It is difficult to think of her as in Remission when she still has 2+ years of chemo left. It's hard to say "Oh Yeah!" when I know what she still has to go through. The two just don't go hand in hand for me. It is also scary to think she doesn't need to go to the Doctor next week and have a blood test to make sure she is okay. What if she isn't okay, but we don't find out for 2 weeks? It is a little nerve racking- the hospital has become almost a safe guard for me when it comes to caring for Ella. I think it was a relief when she was admitted last week, because I knew I would not be the only one watching her to figure out what was wrong.

This Sunday there is a 5K in Crystal Lake to benefit Cancer. Come run/walk if you can! $25 registration day of...Jes and I are going!

Have a great weekend.

Thursday, October 14, 2010

Day 49

Her kitty hooked up!

Waiting for blood work to come back so she can have her spinal tap

Recovery- Where Grandma had 4 eyes!
Ella had a spinal today, her last one for a while. Thank God! She played with grandma and grandpa while she was waiting for her blood work to come back, and laughed that grandma had 4 eyes as she was coming out of the anesthesia. She gets a two week break from Clinic and her ANC counts are good, so...YEA! So 2 weeks of normalish life! Right now she is dancing to Hannah Montana and bouncing around like a diva. Ahhhh, the joys of a 4 year old.
So, this is kinda the clam before the storm. She will have weeks off before they start another round of chemo's again. One day at a time right?

Wednesday, October 13, 2010

Day 48

Ella is having another stellar day! Playing with Grandma, trying on her new multi-colored wigs and eating well.  But, this morning when I told her Grandma and Grandpa were coming- she got sad. She has figured out that she is going to clinic if they are here. Crap.

I was messaging back and forth with my brother and he said something that has stuck with me. He said “I bet you feel like you have aged 5 years in the past month”.  Now, as a woman that is closer to 40 than 30 and enjoys reading the blog “My Formerly Hot Self”, this statement has been weighing on my mind. I realized that it has been a while since I have “Looked” at myself. If you know me, you know that it is a rare occasion that I wear make-up or don more that a barrette or pony-tail in my hair. So, when I look in the mirror- I look at my hair to make sure there aren’t too many bumps in my pony tail, or I look at a specific spot on my face, but again, I never really look at myself. I am guessing I am not the only woman out there that does this.  In my head- my face and body look like they did when I was about 28. So, looking in the mirror brings forth a sharp and painful memory that I am no longer 28 and hot.  When I was 28ish, I remember reading an article about an actress who vowed to grow old gracefully, and that she was proud of ever laugh line on her face because they showed she had lived. I aspired to be like her. You know, grow old gracefully. Not dye my hair, no Botox for me, stay “Natural”.

So, I bravely looked in the mirror.  It was hard to not just look at my hair, or glance and turn away. Why is this so hard? Does it really matter anyway? My gravestone won’t say “Katie- She aged well.” I hope it says “She loved well”. That’s it. Well, after inspection of my new gray hairs (which I have since attempted to lighten), the crazy bushes growing over my eyes, and the dark circles under them- I thought about what Ella sees when she is looking at me. The only thing she seems to notice is my eyes. She is looking to see if they are looking at her when I am telling her if it will hurt or not. She notices my arms- are they holding her tight when we snuggle. She notices my belly- that gives her a “mushy” place to rest her head. And she see’s my nose. My nose is important. She has never been a kisser- and never on the lips, but when she is coming out of anesthesia- she uses her nose to rub across my nose. Too tired to talk, but awake enough to rub noses – her way of saying “I love you mama”.

So, my new things to worry about- my eyes, my arms, my belly, and of course- my nose. Everything else can wait. My daughter sees her beautiful mama and that’s all that matters.

Tuesday, October 12, 2010

Day 47-Rockin My Purple Wig!

Sara and Ella Reading- She can't get enough of books right now.

My girl can rock a purple wig! She had another great day.
This morning she read stories and played with Pickles (Sara) while I cleaned the house. Worked on a word wall and handwriting, and danced to Abba's Dancing Queen with Rachel after lunch. All and all a really good day for Ella. She asked for a bright colored wig and one to wear for Halloween, so we got 2, but the purple one was the favorite. She has already asked for the other 3 colors Walmart had.
When I went to pick up Josh from school, there is a helper who gets the kids to your car. As Josh and Morgan got in, they commented on Ella's wig- and so did the helper. She said "cool wig!" and Josh replied- "yea, she is losing all her hair so she has to wear a wig". I was watching Ella and I saw her smile disappear a little. When we got home, she said she wanted a wig to wear when she lost all her hair, she said she needed a place for her headbands to go. She is so smart.

Short one tonight.

Just really like this.....

Our deepest fear is not that we are inadequate.
Our deepest fear is that we are powerful beyond measure.
It is our light not our darkness that most frightens us.
We ask ourselves, who am I to be brilliant, gorgeous,
talented and fabulous?

Actually, who are you not to be?
You are a child of God.
Your playing small does not serve the world.
There's nothing enlightened about shrinking so that other
people won't feel insecure around you.

We were born to make manifest the glory of
God that is within us.

It's not just in some of us; it's in everyone.
And as we let our own light shine,
we unconsciously give other people
permission to do the same.

As we are liberated from our own fear,
Our presence automatically liberates others.

—Marianne Williamson

Monday, October 11, 2010

Day 47

Thanks for the shot Jay!
Ella had another stellar day! Good mood, and we went to the mall super early to buy some books, and earrings. We found some cute clip-on earrings that weren't babyish, but more like a little girl. She was happy just to watch the water fountain from her stroller.

I feel like people smile at us differently. When we pass people, they give us a polite smile, look down at the stroller and see Ella, then they look back at you and give you a different kind of smile. I think this smile has different meanings depending on its origin.  Some say "she is beautiful", some say "oh, something wrong- I'm sorry", and others say- "why is your 4yr old in a stroller?". Mostly, I feel like we get the "I'm sorry" look.  The funny thing is- we are the lucky ones. If you saw the some of the families we see, or if you have read the journey of any other cancer kid, you would know we are the lucky ones. Ella will come out the other side of this, but other kids aren't so lucky. Yes, she will lose her hair, throw up, be poked and prodded, have a crappy 2 years and 3 months- trust me I am not down playing that, but in the end- she will be okay.
Other families going through this, don't know for sure how it will end for them. They can follow all the rules, give all the meds, and take all the tests- but it doesn't mean it will all be okay in the end. This is why we are the lucky ones- we have a 90% chance- that it will.

The song "I am blessed to be a witness" is running through my head tonight, but specifically the chorus "I am blessed, I am blessed, I am blessed, I am blessed".

I am grateful and feel very blessed.

Nighty Night-Katie

Sunday, October 10, 2010


Ella on our walk today.

Ella had another good day today. She played with her brother and danced. We went outside for a walk, just to listen to sounds and look at the colors. This is my favorite time of year. It reminds me of when Steve and I were dating and we go up to Devils Lake and take 13 rolls of film in one day. That's also where we got engaged- so good memories! Ella's hair loss has also slowed down a bit in the past few days. Her face still looks so different to me. I took some pictures of her today while we were on our walk, she doesn't really like her picture taken- never has. Getting her to look at the camera is next to impossible. How I have gotten the good shots of her that I do have is beyond me. But, being the youngest and not in school as much as her brother- she has been my subject many times- mostly using bribery! I want to share some of those photos here with you. I don't know if I am just missing who she was, or curious how she will be when this is over. Her changes aren't bad- just different than I ever imagined. It is so cool that I have seen a bit of a sparkle in her eyes again over the past few days. I can't even begin to explain how full that makes my heat feel. Steve grabbed my attention tonight to point out that she was twirling and dancing in the living room tonight. Love it! Anyway, hope you like these photos of Ella.

Blessings, Katie

P.S. Steve finished the marathon!

Saturday, October 9, 2010

Day 45- Our normal day!

Ella asleep in her bed!
 Ella had such a great day today! She went for a long walk this morning to collect leaves with Sara. We colored for 1.5 hours, she walked up and down the stairs on her own today AND went for a bike ride!!! Plus Steve and I went our for dinner and had a date. We had a normal day. We had a normal day. WE HAD A NORMAL DAY!!!!!!! Added bonus- she is sleeping in her own bed right now, exhausted from a fun day.
For all the days that I've gotten to the end of the day, and not taken the time to appreciate the little things- I am sorry. If your child laughed today, smiled at you, was able to ride their bike and walk up the stairs, please take a moment to be grateful. Give them an extra kiss tonight when you tuck them into bed and be happy that they are sleeping in their own beds. I hope this experience makes me a better parent to Josh and Ella.

Josh asleep in his bed!
Have a great weekend.

Friday, October 8, 2010

Day 44

We have friends who have a child with disabilities. This is a child that we would get to see weekly, and that I grew to not only love, but admire. And every time my husband and I would talk about this family, we wondered how the parents could be so strong and we would always take a moment to thank God that our children were healthy. Now, we are those parents, and we are that family. We are the ones that our friends go home and talk about, and wonder home we make it though the day. Everyone I see tells me how strong I am, but I never thought I could be strong. Often marveling at how God could make the sacrifice of his son and stand by and watch him suffer- I never thought I could watch my child suffer (and I am in no way comparing the 2).

Ella threw up this morning. She then spent the morning playing with Grandma and Grandpa while I ran to the store. For as much as I hated the steroids, I wish I could get her to eat ANYTHING now. At about 2.30 today- she finally said she would have a cheese roll up from Taco Bell. So, we hopped in the car and to Taco Bell we went. She and I took a little walk and found colorful leaves today to make a placemat with. Her steps are unsteady- like a small child she has to be careful with every step. She can’t make it up the stairs to get into the house without help. All of this aside- she laughed today, she played with her brother, and she smiled. That makes it a good day.

Steve is running his 10th Marathon this Sunday on 10-10-10...wish him luck!

Blessings, Katie

Thursday, October 7, 2010

Day 42 and Part of 43.....

So they figured out what is wrong with Ella. They think the antibiotic she got from the first fever/ER visit gave free reign to the bad-bacteria in her tummy. Then, when she got the 2nd dose in the ER- they just threw a party and made themselves at home.  This is called C-diff and it gave her the fever and diarrhea.  She got Tylenol again on Tuesday night to help with her fever and when she woke up Wednesday morning she ate, was happy and actually talking. It might sound weird, but I don't think I heard her beautiful voice for at least a week.  She had resorted back to whining and grunting her way through our conversations. When she started talking to me on Wednesday morning, I knew she was getting better. They prescribed her another antibiotic to fix the C-diff.
When they checked her blood, her red's were low again, which meant another blood transfusion. This kept us in the hospital until 8.45pm on Wednesday. She had a spinal tap scheduled for Thurday, so we probably should have stayed, but Ella really wanted to go home.We got home around 10pm. She was sooo full of energy when we got home. She was chatty and wanted to play- I just wanted to pass out! We went to bed around 11, but had to be back at the hospital by 9am for a 10am procedure. We were a little bit late :-)

Today, we got to Clinic for her Spinal  and it went really smoothly. She started whining again as soon as she saw us pull into the hospital, and pretty much the rest of the morning. The surgery team came in today to cut out some stitches that were sticking out of the 2 incisions they cut for her port. Every time she heard them say "cut" she stated whining. She is smart. She totally knows what is going on and she is not happy about it. They put her under today for the spinal, and I was determined not to get queaser this time. I took a few deep breaths and Jan stood closer to me "Just in Case".  My knees did get a little weak, but I made it. When it was done and she was laying there recovering, the tears just streamed out of my eyes. I think I feel a little safer letting go when she can't see me. Just seeing her laying there and trusting us all to make her better. Everyone in the room had such a different personality and different way of talking to her and comforting her- but we all have the same goal, make her feel better.

Right now she is singing songs and playing with her Build A Bears. Happy as can be.

One day at a time right? It is all part of the process, just taking one day at a time. Trying to not think so much about tomorrow and just make it through today- good or bad. That way we can cherish these happy moments.

I admire my Mother-In Laws(Jan) ability to play like a child. She is currently diligently dressing Ella's Build-A-Bears and singing while Ella shakes her booty. And as fast as I wrote that- they have switched to reading books. I have a new joy when watching her play- just play.

Praying for all other parents whose child is not currently smiling and "Shaking what their mama gave them!".


Tuesday, October 5, 2010

Day 41- Still at the Hospital

It amazes me that Ella still wants me to snuggle with her. Today I had to hold her down as they took the tape off of her port to check for infection. They use this "Super Glue" type of tape that makes her skin break out in a rash. We asked them to use a different kind of tape, but one of the nurses missed it in her file, and she got the super sticky one. She just cries. She knows it is going to hurt. I think band aides are the most painful thing for her because mentally she knows it will hurt no matter what!
So yes, we are still in the hospital and she still has a fever and no one knows where it is coming from. They say this is common and that we are lucky her white counts are good and she is not neutropenic so her body is fighting this- whatever it is.
Ella snuggled in her blankies
She has lost muscle strength in her legs, so we have to carry her pretty much every time she needs to get up. She cries every time someone comes in the room to examine her. Every time she tries to color or pick something up, she has to try to un-tangle the loose strands of hair from her hands. She ate 3 bites of rice for dinner and everything tastes bad. The drugs are making her appetite, well suck. So she went from never being full, to never being hungry.
This was just from taking out yesterday's pig tail
Today a song from Alvin and the Chipmunks made her laugh- that was the best part of the day.  Apparently " Mommy likes to wear, dirty underwear, with little hairs!" Gross Right? I totally don't care. She laughed for 10 minutes over it and I plan on trying it again tomorrow.
I can't even begin to tell you how much hair came out of Ella's head today. It's so frustrating because it is like a reminder ever minute that this cancer is in her body. At this point, I wish it would all come out and be done. Just another reminder that we are not in control. I was really expecting that her fever would be gone today, so now even though I told people all day it is just routine and this happens all the time (because that is what the Dr.'s told me),but I am starting to worry.
They just gave Ella some more Tylenol to get her fever back down, and hopefully she will sleep well.

Nighty night all. -K

Monday, October 4, 2010

Day 40- Back in the Hospital

Ella still had a temp this morning, so back to the Hospital we went. The doctor checked her out and decided to admit her until her fever is under control. All the way to the Hospital she just kept saying "I just wanna go home".  I think she knew it wasn't going to be good. Her high fever today was 102.6, that was right after we were admitted.  They are running tests on her blood and finally let her have some Tylenol- so her fever went away immediately!  The Infectious Disease Doctor is checking her out too.  All those times when they were little and something small seemed to be wrong and I thought to myself  "Na, I won't call the Dr., I'm just being paranoid.", well paranoid is good now.

She is finally resting after a long day of being poked at and asked to breath by doctors and residents. We are praying that her fever stays gone and we will be able to go home soon. She isn't really eating right now, and will only drink if we remind her. We will know more tomorrow after the blood tests come back. They think she just has a virus and will have to wait it out.

I am not worried or afraid because I feel at peace and know that she will be fine.  One of the nurses came over and just looked at me for a minute today. I asked her what she needed and she said she was trying to figure out if I was upset that Ella was being admitted. I am not because I know it is just part of the process. They are doing everything in their power to keep her little body together during this process- how can I be mad?

Ella asked Dadda to stay with her tonight- so I am off to the house for a full night sleep, and I'll be back in the am.  We are so grateful for friends and family r have offered to help us out. We love you.


P.S. listening to KLOVE on my way home from the Hospital 'Praise you in this Storm" is on.....
"I'll praise you in this storm
and I will lift my hands
for You are who You are
no matter where I am....."