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Friday, December 30, 2011

Friday December 30th 2011- Christmas

We celebrated Christmas this morning. I tried, but it just wasn't the same. It wasn't the gifts, it was that I hard a hard time feeling the gratefulness and joy that I usually feel this time of year.  Ella is at that perfect Christmas age. She was so excited she asked to sleep in front of the Christmas tree so she could see Santa. She wanted to know if she was going to be able to hold the candle at church this year. She was excited. I had a hard time feeling joyful this morning, because this morning it was just about the gifts. I felt like the main reason for the season was gone from me. we didn't take any pictures.  I really just wanted to turn the tree off and get back into bed, alas the day was full of "Things" that had to be done.

One of those things was taking the van for it's emissions test.  The emissions test is due on January 31st, but the license plate renewal is due n December 31st. I missed the note in big BOLD black letters on the emissions test that said they would not renew my plates until the van passed the test. So, in the mail when I got home I found my check for the license plate renewal un-cashed with a letter from the state telling me I need to learn how to read. So I was off to get the van tested and send in the plate renewal, again. As soon as the van passed I went to the post office to wait in line and get the renewal back in the mail. I figure I won't really be driving much for the next week so I can wait for snail mail to get my plate renewal sticker to the right office. We live in a small town. The kind that has 1 fire department, 1 post office and 2 bars. The post office is a small town post office that is busier on most days than it can handle. Today as I was next in line, the lady in front of me realized she was short $.40 to pick up her package. She asked the counter clerk to hang on as she went to her car to get the money, I told her not to worry about it, I had the $.40. She thanked me and went on her way.  When I got up to the counter the clerk mentioned that it was a good thing she knew me. I said I didn't know her and she took my envelope and mailed it for free. She re-stamped the date since I had a stamp on it from the 1st time and resent my renewal. I thanked her and went to my van. I could not help but cry.  (Not just cry, but sob like a baby.  You could say I am a little tired and emotional right now.) Her one small act of kindness made me realize in an overwhelming manner that the joy of Christmas- the real joy is an everyday thing. Not just once a year.

Ella did really well today. She was like a completely different child today. She wasn't walking hunched over and she smiled and played with Jesania and her brother. No fevers, her appetite was better and she was happy to play with all her new toys.  My favorite all time gift? My husband and children. They are a gift that I can treasure everyday. I really hope I can remember that the next time my hubby walks by a full garbage can, Josh takes 30 minutes to brush his teeth and Ella has a complete meltdown.

Happy New Year Everyone. Enjoy your gifts.


Thursday, December 29, 2011

Thursday December 29th, 2011- Home!

Yea, my girl is home!

It didn't look that way this morning. One resident came in and told us that her X-Rays from yesterday came back with no new pneumonia (It took 19hours for them to get the results- so frustrating!!!!!). Then about 20 minutes later another resident came in and said that she had new pneumonia in both the right and left lungs. So we waited until 4pm for the Infectious Disease doctor to say she wanted to take another set of X-Rays. Then at 6pm her normal doctor said nothing new so she was release! Steve and I had already switched shifts for the night so he called me to let me know they were on their way, and I cried like a baby. She is still on chemo hold and we go back next Wednesday as long as nothing new springs up between now and then.
So now we will celebrate Christmas (insert big smiley face here!).

Thank you to everyone for all your prayers and notes. I can not wait for October 28, 2012!


Wednesday, December 28, 2011

Wednesday December 28th, 2011

Something about a sleeping child just makes me smile.

Ella has been inpatient for 5 days now. Today she was fever and diarrhea free...YEA! They took additional X-Rays of her chest to check on the pneumonia, and she did not have any reactions to the IVIg infusion. So, we are really hoping that we will be able to come home tomorrow.


Tuesday, December 27, 2011

Tuesday December 27th

Day four at Loyola.
Ella's fever FINALLY BROKE around 6am this morning. It stayed gone all day without more Tylenol or Ibuprofen.  Her Aunt Carrie brought her bagels from Panera, but we still can't get her to eat much. She has been drinking some protein shakes, and a small amount of cantaloupe and grapes. Her ANC was up to 700 which is pretty good, but they tested her antibodies and they are at 250. The ideal is 500. So they are giving her IVIG in her IV to boost that. The side effects of this drug are low blood pressure, vomiting, diarrhea, and headaches. They will have to monitor her every hour tonight to make sure her blood pressure doesn't go too low.  There is also a viral pneumonia in her lungs.  She will be here until she starts eating and we get the diarrhea under control. She is also on chemo hold still until the doctors feel her counts and body are ready to start up again.
Ella's Hospital Door
This is what the door to Ella's room looks like. So whenever a doctor or a nurse comes in, they need to put on a mask, gloves and gown. Today, I was really frustrated with one of Ella;s doctors. They stood at the door to talk to me while I was on the other side of the room with Ella, because they did not want to "gown up" as they put it.  I know they are busy, but this doctor spent more time in the hallway talking to the residents than to me. It was very frustrating. I know everyone has their gifts. I can tell you how much I appreciate the doctors and nurses that care for Ella in body and spirit. Ella knows who those people are too. She warms up to them so much quicker that the ones that want to treat her body and leave the room.  Maybe my expectations are too high? Really, they do not get evaluated based on how happy their patients are, just how healthy they are.  I am grateful for the ones who have the gift and ability to treat the entire person.
Ella and her Christmas puppy.
Thanks for keeping up with us.

Sunday, December 25, 2011

Christmas 2011

Merry Christmas.
Ella woke up with a fever of 104 on Christmas Eve, so we where admitted to Loyola around 9am.  I woke up Josh to let him know that Ella had to go to the hospital. He asked me if she had to be there for Christmas, and when I told him yes he began crying. He went downstairs and did his best to make her laugh while we were packing up her bags.
They ran blood work and took a chest X-Ray. Her weight is down about a pound from last week at clinic and her ANC is still about 580. Her fever ranged from 102-104 all day long. Even when they got her on Tylenol, her fever never got under control. Around 6pm last night they told us that they were able to verify that she has C-Diff and 2 virus'. The C-Diff she got the last time they gave her 2 rounds of heavy duty antibiotics, just like this. This time she also has virus' that are keeping the fever from going anywhere.
The hospital staff was really great about trying to make Christmas special for her. We wrote a letter to Santa and left cookies with milk for him last night.
We tracked him on our computer through the night. She had to wake up ever 4 hours for Tylenol and every 6 for antibiotics for the C-Diff, then another 4 hours to check her vitals and temperature. Unfortunately these times did not join up at all, so she was up about every 2 hours. Around midnight I told her all I wanted for Christmas was for her fever to go away. She told me to leave a note for Santa, so I wrote one and sat it next to hers. Sometime between 2 and 4 am Santa left packages for Ella and a few for Josh in her room. She woke up around 4am and couldn't fall back to sleep. She saw the packages, but she felt so icky that she didn't even get excited about them.
Steve, Josh and Aunt Carrie came up to the hospital around 8:30am and we opened gifts and ate breakfast together. Every year we take a funny face picture for Christmas. here is our picture for this year:

Her fever still isn't under control. It was back to 104 at 6pm tonight. they just switched her meds again to try to get it down. She will not be coming home until her fever breaks, because they are worried about dehydration. As long as her ANC stays about 500 she should be able to recover from the virus'.

I'm torn between being grateful and grumpy. On one hand I am grateful that we were all together and that Ella is here for me to even worry about. I know other parents that would be happy to have their child back for Christmas. I am grateful for friends and family who have reached out to support our family. I am grateful for the hospital staff that is caring for my baby. I am grumpy that our family could not spend Christmas together. Half of my family and my heart are still up at the hospital right now. I am mad that cancer took away the joy of going to church and spending Christmas day together at home in out PJ's. I am mad that the gifts are still under the tree and that I left Ella crying at the hospital today.

I will update as soon as something changes. Merry Christmas everyone.

Friday, December 23, 2011

Friday December 23, 2011

Ella 365days

Ella's fever is back to 101.5. The Doctors are working with us to monitor it at home to try to keep her out of the hospital for Christmas. If it starts trending up we might be sent to "The Big House".

Thursday, December 22, 2011

Thursday, December 22nd

Ella still has a fever. She has been battling a low grade temp for a week, but yesterday we made the call and took her to clinic. They ended up x-raying her chest and found some residue in her lungs. Her counts came back at about 600, which is almost too low for her body to fight, so they gave her a dose of antibiotics and are running cultures to see if it is bacterial or viral. She woke up this morning with a fever and Steve and Ella are back at clinic for a 2nd dose of antibiotics.  Right now we are praying her ANC is not under 500 today, otherwise she has to stay at the hospital. That would mean a possible Christmas at Loyola.  To top it off, Josh woke up not feeling well this morning so not we have to keep them apart until we know for sure Josh is healthy.

Thank you to my prayer warriors!

UPDATE:  Ella's ANC is 580, so she got another dose of antibiotics, and a prescription for antibiotics and she was able to COME HOME!!!!! YEA!!! As long as we can keep the fevers at bay, we will be good.  They put her on Chemo hold for now and she is scheduled to be back in clinic next Tuesday as long as she doesn't get a fever before then.
Now, here is hoping that this is bacterial and the antibiotics will help. I will keep everyone posted.


Sunday, December 18, 2011

December 18th, 2011-ER, Clinic and stuff.

Sorry for the late post. This has been a long week!
Ella and Adorable Bunny

I caught a cold last week, which means Ella ended up catching a cold. I have been so worried about her catching something from school and when she does get sick, it's from me. Ahhhh!  Ella spiked a fever of 102.2 last Sunday, so off to the ER at Loyola she went with daddy. Her white counts came back good- which means she has the ability to fight the cold, so they gave her a heavy does of Antibiotics and let her come home.  I can't tell you how grateful I am that her counts were good! Josh saw me crying when Ella and Steve left for the hospital. He asked me if I was scared. I told him yes, because I never know what is going on inside her body, but I have to trust that God will keep her safe. That night he cried when he was praying for Ella before bed. He prayed for her to be healthy and for the cancer to go away. He really wanted to stay up until they got home from the hospital, but since we didn't know how long she was going to be, he fell asleep.
We went back to clinic the next day for a second round of antibiotics and since we were there, they also gave us her chemo 1 day early to save her from being accessed again and having to come back for another clinic visit.  She still isn't 100%, but she is definitely better.  Thank you to my Facebook friends for praying for Ella this past week! And Thank you to nurse Theresa who advocated for us to get chemo and not have to come back!

Ella missed school all week. She was pretty bummed that she had to miss the Christmas Party at school. When I told her she couldn't go, she said "momma, cancer is stinky!" I know baby, I know. I hate when she has to miss part of being a normal 5 year old because of cancer. It pisses me off! Then she acted out how she is kicking cancers butt. That part was endearing. I told her to kick it good, and she said "I am momma!".

Charles Tillman from the Chicago Bears has a foundation that supports terminally ill children. He came to Loyola to visit a few weeks ago and very generously donated backpacks filled with goodies, signed autographs and took pictures with all the families. Ella's favorite part was that he gave every kids a Build A Bear in a Bears uniform. She was so excited to get the Build A Bear, and she ended up with 2 because her brother handed over his immediately. Now that he is 8, he is too big to be seen with a stuffed animal! .Mr. Tillman remembered that I spoke at his breakfast earlier this year and even took a few minutes to talk to us about how he plans to grow the breakfast for mom's next year. He is very grounded and down to earth for a sports figure. Very kind. Thanks Peanut!

Ella dressed up for the movie.
Everyone have a Very Merry Christmas this year. I can't help but reflect where we were this time last year. Ella was in the throws of hard core chemo and her Aunt Carrie rented out an entire theater so she could see Tangled. Her hair was so thin, but we curled it and got a crown on her head. It was a good day.
Thank God for your blessings, realize everything you have to be grateful for, laugh even if you don't want to.
Merry Christmas and Happy New Year.

Blessings~Steve, Katie, Josh and Ella

Wednesday, November 16, 2011

Wednesday November 16th, 2011

Ella's thoughts on Cancer......
Ella Bella had clinic yesterday. She did well, her counts were good, which makes me feel better about her being in school all day. ANC was 2000, which is stellar. Her liver function is down to 2 times the normal level, which is way down from 8 times the normal levels. Small victory and we will take it.  She is growing. She was 3'5 tall when we started this journey and now she is up to 3'8.75". Her weight is also up to 44 pounds, and so they had to increase some of her medications.
Ella in Recovery from Spinal. Her eyes tear up from the medication.
Today her back was hurting from her spinal, she napped and fell asleep early tonight. This is how I know she really isn't feeling great.  It seems like she feels worse after each clinic visit. Hopefully she will feel better tomorrow.
I forgot my camera for the first time I think. So I had to use my phone to take a few pictures. She was focused on going to Red Robin to eat when she was done. She could not eat anything till the procedure was done. She knows it is going to be a rough clinic visit if she can't eat. The first thing she asks when she hears it is a clinic visit week is "Can I eat?". All she wanted was macaroni and cheese and melon from Red Robin. It is so funny that such a little thing to focus on can just get her through it. She is so amazing. As she was drifting into twilight and I just kept smiling at her and whispering "I love you, I love you, I love you".
She is my little hero.

We did our family photos this past week. Thought I would share it with everyone.

Thank God for all your Blessings- big and small. Happy Thanksgiving.

Blessings~Katie and Family

Tuesday, November 15, 2011

November 15th, 2011-Clinic Prayer

My Prayer today for my daughter.

Dear Father, please hold my child today.
Be with her this morning when she can't eat.
Be with her when she is nervous on the way to the hospital.
Be with her when she is anxious because she knows when they call her name, she has to go through the doors that start her chemo.
Calm her while she is anxious as they take her weight, height and the squeezie takes her blood pressure.
Hug her as we walk in to see the nurses who treat her and try not to fall in love with her, because they are afraid of losing her too.
Hold us both as she sits on my lap and I hold her as they put the needle in her chest.
Be with nurses who do this procedure.
Thank you for the nurses who do this and then crack jokes at each other all morning in love.
Be with her as she anxiously waits for her blood tests to come back.
Thank you for her grandparents who keep her occupied and smiling during the waiting times.
Be with the doctor who will examine her today, please guide their hands and their heart.
Thank you for the doctors that treats my child's body and spirit.
Thank you for the craft lady that adds another distraction while Ella is waiting for her spinal.
Be with her as she sits on the table waiting for her spinal.
Be with her as the inject her with drugs.
Hold her still while they take spinal fluid to be tested.
Please do not let there be any cancer in her spinal fluid.
Be with her as chemo is injected into her spinal fluid and we watch as the fluid drips on the table.
Please hold her as she comes out of the medicine and begins to wake up.
Please be with the nurse who watches her today to make sure she comes out of it okay.
Please be with her as the administer chemo through her port.
Please be with the doctors that test her spinal fluid, don't let them miss anything.
Please let her feel the love of her family and friends that are praying for her today.
Please let her be happy
Please let her be cancer free.

Wednesday, October 19, 2011

Tuesday October 18th, 2011-It's a GOD thing.

Ella's clinic visit on went well. Her ANC was 1800 and she grew another 1/4 inch! Every month she grows 1/4 inch. She was happy that her favorite nurse accessed her port and she stayed in a good mood the entire time. She was pretty excited that Grandma and Grandpa got to go with this time and that a trip to Build a Bear was planned out in detail. I hate to say it, but she is doing really well.
I think she likes school, but she will never admit it to me. She has a mini-meltdown every morning, but is smiling before they get down the street. When I went on the field trip with her class, she was holding hands with other kids and playing. It was really cool as a parent to have the opportunity to see her interact with new kids, and just be happy.  I took these shots of the kids last week. Just some fun fall pictures.

While we were taking pictures at the forest preserve, we saw a group of horseback riders gathered with their horses. Ella and I walked closer to them to look at the horses. All horses that are brown she names "Chocolate" and all white ones she names "Vanilla". This is similar to many of her build a bear names. While we were admiring a "Chocolate" the owner came over and asked if Ella would like to feed the horse an apple. Usually when strangers (and even sometimes friends) approach, she shies away. This time she was like "Yea Yea!". So the owner let Ella feed Chocolate (Dusty) an apple. Then she offered to take Ella for a ride. My shy girl hopped on that horse and did 4 laps without me. When they were done, I thanked the owner and asked her if she rode in this area often. She said in fact no, this was the first time she had been out since April since she lost her father. I told her how sorry I was that she lost him and asked her how he passed. She replied "He had Cancer". I told her he must be close by, because Ella has cancer too and he must have known she wanted to see the horses.

 Now that HAS to be a GOD thing!

Thanks for keeping up with us!  Ella only has 1 year left of Chemo now! I can see Homer Simpson dancing in my head going Woohooo !!!!

Thursday, September 22, 2011

Thursday September 22nd, 2011

My Girl on her 1st day of school.
She was so excited to go, and loved playing with everyone....NOT!   She said she didn't want to go, she was anxious, she was extra clingy the days leading up to the first day of school, but, she went and she was singing her ABC's on the way there in the morning. The first week of school they had a color of the day and purple was the color for the 1st day. So far Ella has worn a Tutu EVERYDAY of school.

She looks so small, and her backpack looks so big.
She had clinic on Tuesday. This clinic was Chemo (Vincristine) and the added delight of a flu shot. I think the flu shot was worse than chemo, because it wasn't what she was expecting.  She wouldn't use her arm for almost 48hours.  Her differential counts were low, but not low enough to hold chemo. Her port was very black and blue this time after chemo, which is a concern to mom, but she is okay. She got the all clear to go to Myrtle Beach so she was very happy. We were not able to go last year because Ella was in the middle of her hard core treatment. She can not wait to go. It is her favorite place to visit.

We went to an apple orchard this weekend to pick apples with our neighbors and good friends. It was my first time at an apple orchard, so I took lots of pictures and Ella has made sure that one of the apples goes into her lunch everyday. Here are some of the pictures I took.

Thank you for reading. Please remember this is Childhood Cancer Month! Please do not let another child have to go through Chemo. Think about making a donation in Ella's honor, or any child you know who has suffered.  
Donate to research here: CureSearch


Friday, September 16, 2011

CureSearch Walk September 10th, 2011

CureSearch Walk
Click on link to see video.

Last Saturday we participated in the CureSearch Walk in Chicago. CureSearch provides funds to reseachers to cure Childhood Cancers like Leukemia. This is a video of the photos we took. All the survivors received a medal and a balloon was released in memory of the children that we have lost. Please consider a donation in Ella's honor to CureSearch.

Thank you to our friends and family that walked with us!


Wednesday, August 31, 2011

Tuesday August 30, 2011 1 year down, still too many days to go.

Ella August 26th, 2010
It is so hard to write this. Never in a million years did I ever think someone would tell me to hold my child down so they could put a chemo filled needle in their chest. The words "My child has Leukemia" still require me to choke back tears while at the same time I say "but, she is doing really well". I don't mean to sound un-grateful, and I'm not, but this was a hard week.  There are a million ways that I want to reflect on this past year, and they are all stuck in the middle of my chest.

This song has been with me this week as I reflect on Ella and our families journey. Gungor "Beautiful Things".

Romans 8:28 states that "all things God works for the good of those who love him, who have been called according to his purpose".  I believe that some how God will use this for good, I just can't see it yet. I am grateful that Ella is still here with us today. Tears flow as I even type this sentence. When I kiss the top of her head and tell her I love her, I say it now with more purpose that I ever did. It is so important to me to make sure she hears me and understands that I love her with everything that I am.  She is stronger than she will ever realize. Steve reflects often on the fact that she trusts us unconditionally. She has never questioned one treatment. She always does what we tell her needs to be done. She shows us unconditional trust all the time.

To celebrate we had friends and family over to enjoy some "Kickin' Cancer Butt" cake that Steve and I made. It was great to hear laughter all night and hear everyone talking. This year taught me a lot about my own friendships and the kind of people we have around us. We are so very blessed.
Ella and her "Butt" cake.

So now that I have typed out how I feel and erased it a few times, I think the best way is just to show you what Ella has been through. It is SO amazing to me that she smiles as often as she does. Since my children were a just a thought, all I prayed for was their health and happiness. She sure is a happy little Ella.

Ella starts Kindergarten in a few weeks. She isn't happy about it, but it is mostly the separation anxiety that she fears. For the past year she has had a lot of mommy time and that is about to change. We have tried to slowly get her ready for this, but it will still be hard. I have met with everyone at her school, and they have been WONDERFUL! I feel so lucky because I have heard so many stories.....but her teacher is awesome and is very familiar with ALL. I know at some point she will get sick at school, and that does scare me, but I so desperately want her to have a great school experience. Honestly, I also desperately want to have some time to myself. I feel selfish for even saying it, and I know I will miss her and worry about her, but it will be nice to not have my 5 year old attached to my leg for a part of the day.

Ella's last chemo was a little rough. She had some back pain for 2 days from her spinal and I kept her home from school. She also has a cough and stuffy nose that will not go away, but thank God- no fever.
Link to Ella's video on You tube:

Thank you for following Ella's Journey.


Friday, August 26, 2011

Thursday August 25th, 2011

Tomorrow is the official day of Ella's Leukemia diagnosis, but tonight is the night we were told our baby "most likely" had Leukemia and Ella and I spent our first night in the hospital getting a blood transfusion. I feel like I am losing my memory most times. If I don't write something down, chances are I will forget it - this I think is permanently burned into my memories.

I watch her sleep all the time. She sleeps, I cry and pray. I still ask why. I still think it is not fair. I still pray that she won't relapse or get sick.
Tomorrow we are having a party to celebrate Ella's 1 year of Kickn' Cancer's Butt. I will blog again after the party.


Wednesday, July 27, 2011

Wednesday July 27th, 2011

 We were able to take a one week vacation over the 4th of July so we took the kids up to Door County to go camping. It was really nice to spend time alone just hanging out and doing fun things. The whole time we were gone, the fact that Ella has cancer only came up one time. It was a little challenging to give Ella her meds, and when we realized we forgot to bring the strawberry syrup we use to flavor her meds we did get slightly panicked. Luckily, my smart husband came up with the idea to crush Tic-Tacs to sweeten it up. It totally worked and it is her new favorite!

Ella had clinic yesterday. Josh, Grandma, and Grandpa all got to go to clinic with us. It was nice for Ella to have so many distractions on a clinic day. Her counts were better than last month and I was so happy when they said her liver function went slightly down and not up! It is still elevated, but I was thanking God when the doctor told me. I know as a doctor it must be hard to be in this field, but I can tell you how grateful I am for a doctor that takes the time to talk to you and LISTEN to what you are saying. thank you Dr. Salvida!

I had to take Ella in to get an eye exam for Kindergarten last week. When I made the appointment I told them that she has cancer, just in case it changed anything about the way the doctor examined her. When I got there, I spent a good 10 minutes filling out the forms listing her medications and condition.  The doctor walked into the room, appearing to be reading the paperwork that I so meticulously filled out and said “ So, I see she is on no medications and is in perfect health!”. To quote Friends “Seriously!”. 

Ella also began going to school 3 days a week and she started cheer leading 2 times a week. We are working on trying to help her to be more social with kids her age. This past year she has spent a lot of time with adults and missed some of those group social skills that are learned at this age. So far she is not happy about the changes, but we are trying to encourage her to stick with it and make friends. This week she had Summer Adventure at church She made this craft, and I just wanted to share. She drew a picture of herself on the stage. I love that she drew herself smiling.

Her 1 year anniversary for being diagnosed is August 26th. I am so grateful that she has made it this far, but this day feels like it is looming to me. I am not looking forward to it at all.


Thursday, July 14, 2011

Thursday July 14th, 2011

I know it is not a clinic day, but I just wanted to vent. Ella did have a doctors appointment today, for Kindergarten.
First, this appointment was hard because the last time we were in this office, the doctor handed me a script for Ella to be tested to "Rule out Leukemia".  This was the first time anyone had actually said what was being tip-toed around for almost 3 weeks of testing. This visit brought up a lot of feelings. Ella's one year anniversary of being diagnosed is next month. I am not sure if I feel like celebrating or locking myself in a room and crying. If I do lock myself in a room, good chance I'll either be holding on to Ella, drinking a glass of wine, or just crying and waiting for the day to pass.

We had the very first appointment of the day. I did this to ensure that we would not be sitting in a very full waiting room that  is full of sick kids. Somehow with us having the first appointment and knowing the doctor walked in right before us, we still waiting over 25 minutes for him to come into the room.  Now, I have friends that are doctors and I spend a good deal of time around the medical field, but why some doctors feel there time is worth more than their patients is a mystery to me. I hoped it was something pressing that was keeping him, but I could hear his conversation on the other side of the door. Luckily, Ella and I are use to making time pass in small rooms. This visit did make me more grateful for her team at Loyola.

We went through the usual, stick out your tongue, let me look into your eyes, press on your belly.  Considering her drug regimen for the past year -she grew and was in the 75% for height, eyes look good, weight is okay too. The thing that was frustrating was that I had to fill out a standard TB (Tuberculosis) questionnaire.  One of the questions was is your child around someone who is going through chemo. My first thought was to Ella's friends. I had no idea that her being in chemo could in anyway affect their health.  Second, I didn't realize that chemo would make her more susceptible to TB(specifically). So I answered yes. The doctor then informed me that Ella would need a TB test and that he still wanted to give her the polio vaccine. Now, before Ella was diagnosed, I took every word my doctors said to heart. I questioned nothing, always assuming that they had the education and the knowledge that I did not. Now, I question, not only to make sure I understand, but to make sure that she stays safe. I told him that I was uncomfortable with this because her oncologist said "No Vaccines". He said that was only "Live" vaccines.  I told him that I still was not comfortable with it because if her ANC was low or her counts were off, the TB test wouldn't heal right anyway. Finally he agreed to call her Oncologist and verify "to make me feel better".  I love Ella's team. They answered the call right away, and guess what? No vaccines for Ella. I guess I was just frustrated that he was more concerned with what she "might" get, than what she DOES have.

On a brighter note, the Charles Tillman Foundation is holding a lunch in Chicago this Sunday for mothers of critically ill children(, and I have been invited. I am looking forward to meeting other mom's who are walking down this path too. Maybe they can help me mentally get through Ella's one year anniversary.


Tuesday, June 28, 2011

Tuesday June, 28th 2011- Whining, Walkers and Warriors

Well for all the complaining and whining I heard from Ella about not wanting to start school, she actually likes it! I wouldn't say love, but definitely like. She made 2 friends right away and by day 2 was looking forward to going the next day. When we got to school for orientation, all I could think was "which one of these kids is going to get Ella sick?". On day 2 I got a call from the principal that one of the girls Ella was playing with was sent home with a 102 degree fever and stomach pain. I held my breath when she said 2 more kids got sent home too, but Ella never got sick- she was totally fine. So far school is going well.

This beautiful group of people represent the "Cancer Butt Kickers Team" at the Rely for Life. They either walked, or were support for our group. I am proud to say that our group was one of two that actually walked all night. At one point around 3 am there were only 12 people on the field- and 6 of them were from our team! Also a huge THANK YOU to everyone that support The Relay financially. We had 3 surprise supporters from Noah's Warrior's that joined us to walk in memory of Noah- which was awesome. Becky and Will lost Noah in April and I was honored to have his family hang out with us during the Relay.

Ella had clinic and chemo today. This was the first time it was just the 2 of us at clinic. Her counts were ok. Her liver function is elevated at 8 times the normal function, but has a great capacity to repair itself. So, we watch and wait. Her white count was low too, but good enough to get chemo. Today, she was very brave at clinic. She didn't cry, and at the end she cracked a few smiles and told her favorite nurses all about her sticky feet. Tomorrow, she goes back to school!

We were able to go spend a few days in Wisconsin with family and take our family photos for the year. We went to Devils Lake which is one of our favorite spots. That is where Steve proposed and his family lives 4 minutes from the park.  When I first looked at the photos, I thought the background was so beautiful- it didn't look real, but it is! Here is the one we all voted as our favorite.
Yes, silly faces. Enjoy your summer. Thank you all for continued prayers and comments.

Tuesday, June 7, 2011

Tuesday June 7th, 2011

Sorry I am late in posting. Things are getting busier now that summer is here. Josh still has school until the end of next week, and he is desperately waiting for his summer vacation to begin. The week following that, Ella will begin Kindergarten readiness camp. Her school requires 2 full weeks of full day school to make sure the kids are ready for Kindergarten and to see where they are emotionally and scholastically. So far I am so happy with the school. they are really doing everything in their power to make sure Ella has a positive environment and experience at school. I feel like she will be in good hands, but I know she is scared. She won't know anyone and will be leaving her comfort zone for a totally new environment. I'm nervous for her and doing my best not to let it show to her, and to try to get her excited about the fun things she will be doing. I will keep you posted on how that goes.

Ella did better towards the end of the week. she didn't vomit after clinic and her tiredness only lasted a few days. Knock on wood, she is doing really well. As I type these words she comes running out of her room crying....ahhh.  I think we are going to go down to once a month here on the blog, unless there is something going on that we would like to share. Hopefully it will be only good and positive information.
Thank you all again for your support during this journey. I can tell you from my point of view, that just feeling like someone is listening when you need to say something (or reading), is so therapeutic.  It helps you to feel like you are not alone, like others are on your journey and standing by your side. So thank you to the friends I know, and to the ones I have never met. Since Ella was diagnosed, this blog has been read almost 30,000 times. That's like 30,000 hugs and prayers. The gratitude in my heart is overflowing and words say quiet how I feel.

Here is the link for the Relay for Life
and here is the link for the Cure Search that our entire family will be doing in September.


Monday, May 30, 2011

Monday May 30th, 2011

Happy Memorial Day. Hope you all had a wonderful time with family and friends this weekend, and took time to remember those who are serving, and have served.
Thanks for you patience, sorry this post is late.
Ella and Josh had a great weekend. they got to play in Wisconsin with their cousins all weekend, and they were just go, go, go! We went up on Friday and took our time, going through Madison. It was a really nice "family" weekend. Steve and I ran a quarter Marathon on Sunday and got to hike a bit through Devils Lake. The cousins just played all weekend. They went to the movies, park, had a Lemonade stand at Auntie Becky's.  This is probably the only time I wish we had about 4 more kids. When I see them all together and we gather all 10 of us around Grandma's table to eat together, then I want more kids.

Ella had clinic on Monday. This was not one of her better days. She had a procedure scheduled so she was not allowed to eat. She threw up in the car on the way to clinic, and cried. Grandpa switched places with me and drove to clinic so I could sit in back with Ella. When we got to clinic they were busy! Her labs came back good, labs are always a concern especially after traveling. The only count that was a bit off was her liver, so they are just going to keep an eye on it. While we were waiting for Dr. Sarvida to come in and do Ella's spinal, she fell asleep on my lap.
As soon as her spinal was done, she threw up again. So they finished her IV chemo and we stayed at clinic longer to make sure she got some anti-nausea meds before we left. She didn't eat much the rest of the day, then around 8pm, right when she had to have her meds on an empty stomach, she said she was "Starving". Oh, steroids started again yesterday. She she was up until 10pm last night so we could time her meds out and she could eat.

She is doing much better today. She still seems tired, but better. Her little body went through a lot yesterday.
If you are in the Schaumburg area, please join us at Noodles and Company on Thursday between 12-4pm for the Cancer Butt Kickers Fund Raiser! Leave me a message here and I'll email you the flier you need to take with you. If you bring it in, they will donate 25% of the sales to our Relay for Life Team- Cancer Butt Kicker, Kickn' for Ella and Carrie!


Sunday, May 22, 2011

Monday May 23rd, 2011

Ella had a great week. She played, laughed and smiled. What else can we ask for. I can tell you the most ridiculous purchase Steve and I have ever made is this bounce house. It is also the best thing we ever did! Friday night all you could hear in our back yard was the laughter of children. We cooked out and the kids bounced and played for hours. It is definately summer!

I had a friend call me this week, the funny thing is that she didn't mean to, but I'm glad we had a second to chat. She asked me when I thought I might be able to take a deep breath again. I was honest with her and said never. This, how it is now, is my new deep breath. I don't think there will ever come a time where our guard is down and and we don't take every illness or cough very seriously. She has a series of bruises on her leg this week, and I could not help but think maybe her counts are low. I am sure there will be times, when we breath a little deeper than others but, at least at this point, I can't imagine breathing any deeper than I am at this moment. this week I am praying that God will help me not to be fearful, and to just have faith in his plan for Ella.

I wanted to share Ella's 5year old photos with you. Steve and I took these together. I think they show her personality, and they also show Joshua's love for his sister. Here are a few, but you can see them all at the link below.

Have a blessed week.

Monday, May 16, 2011

Monday May 16th, 2011 Ella's Birthday

I know it probably goes without saying, but this birthday had a whole new meaning for our family. Ella turned five today. Ella, lived to be five years old, have a birthday party, eat birthday cake, and smile with her friends. Ella is still here with us. I can tell you that tears are streaming down my cheeks as I type because I feel that we are so blessed to have her here with us still.
Ella's Birthday party was a gift to us this year in more ways than one. There is a foundation called Bear Necessities that does a mini gift to children with cancer. Ella decided months ago that she wanted hers to be a Build A Bear Birthday party, and so it was. We are very grateful to the Bear Necessities Foundation for their generosity and support.
Ella's Birthday party theme last year was rainbows, and this year she has been really big on the peace symbol, so it was very fitting that build A Bear has a new Peace and Rainbow bear that Ella fell in love with for her gift this year. She had so much fun with her friends and when the party was done, the kids all went out to the front of the store, gathered around Ella and sang happy birthday to her. Even one of the BAB employees teared up as everyone sang. After the party we went to Rain Forest Cafe for dinner and the kids got to enjoy the build A Bear cake that Steve and I made for her.
Ella at the Rain Forest Cafe
Ella's cake

This cake was definitely a labor of Love! Ella wanted it to look like the Valentine's day BAB Box, so we did our best to copy it for her and she was so surprised when she woke up on Saturday and saw it on the counter.  Josh was really sweet and said" Ella, it's the perfect cake for you!"

Our family came in from Wisconsin not only to celebrate Ella's birthday but to watch Josh at his Karate Tournament Saturday Morning. He took 2nd place in Self Defense. I am so very proud of him. He was so very nervous. I don't think he moved a muscle except for when it was his turn to compete. I think he was relieved when it was all over.

I just want to say that Steve and are are so grateful to everyone who was a party of Ella's birthday celebration. Weather you sent a birthday wish, gift, or were able to be a part of her day- we just really appreciate your love and ability to spend this joyful day with us! THANK YOU ALL.
Ella and her Rainbow Peace bear- Yes, that is what she named it!
I also wanted to mention that we saved some of Ella's hair before it all fell out, and this week we compared the color. It is the EXACT same color it was before! Which from what our Onc says is rare. Ella was so happy. She really wanted her red hair back, and I am happy that at least that stayed the same for her!
Have a wonderful week my friends.

Monday, May 9, 2011

Monday May 9th, 2011

Ella had clinic last Tuesday. Her counts were a little lower than I would have liked, but she still got 100% of her chemo. She was pretty tired for the rest of the week, and hungry and moody from the steroids, but overall she is doing really well. She was very happy to have Grandma and Grandpa at clinic with her, and she loves that she gets to work on a craft project while we are waiting for chemo. She was also excited to bring in a bouquet of cookie flowers for the nurses to celebrate nurses week.  There are 4 main nurses that handle the Peds/Onc area and they are a group of strong woman, all unique in personalities. We appreciate all of them dearly.

Kailee and Ella enjoying the weather.
She is so very happy that it has been nice enough out to wear dresses. We took these today in front of the house. We had a very nice Mother's Day celebration. We went to church and Steve helped me garden in the back yard. I love the spring because I love seeing the trees and flowers begin to bloom and grow. Ella had gymnastics this morning with her buddy Avery and now loves hanging from the rings.

This weekend is Ella's 5th birthday party, and her birthday is next Monday. Her birthday party this year is a gift from the Bear Necessities Foundation that supports kids with cancer. She is counting down the days, and guess where she picked for her party?  Build A Bear. Thank God they just came out with a new line of bears, because otherwise I have no idea what she would pick out! Afterwords we are going to the Rain Forest Cafe for an early dinner. I can't tell you have many times I have prayed that I am grateful that she is here to celebrate this birthday and how much this day means to me. I think since Carrie was diagnosed with cancer, I look at birthdays in a whole new light. Instead of " oh crap, I'm getting older- It is more like "Yea! I'm getting older- and your getting older too!"  So, happy to look at her and celebrate her life. She is so strong and has had such an impact on so many people.

If Ella has impacted your life at all, or you would like to leave a birthday message for her, please leave a comment. I am making this into a book for her and I think it will be cool for her to look back and read them when she is older.

Have a Wonderful Week.


Monday, May 2, 2011

Monday May 2nd, 2011

Strong girl!
 I love Stuff like this. When Josh and Ella and just being brother and sister and playing. We got to karate 15 minutes early on Saturday so we hung out in the car and they were goofing around, so I took a few pics. Ella liked this one because she said she looks so strong. She is the strongest girl I know.

Ella had a good week. Not a ton of meds because it is the end of her "month" so she was in a really good mood and have lots of energy.  Tomorrow is clinic day, so we will see how her counts are holding up and do it all over again.
Just goofing in the car.

Happy girl.
Grandma and grandpa are back from Florida so they are here for clinic and to help out with Ella. I am under the weather so I'm trying to keep my distance just to be safe.  This picture I took today. She is in a really good mood and was so excited that grandma and grandpa got to watch her at gymnastics class.

This week Steve and I will be attending Noah's funeral.  That's going to be a hard day. I am sure there will be such a great representation of family and love there to respect little Noah.

Many blessings to you and your family. Cherish every moment.