Van Gheem Family

Reflecting and Wishes

2012-02-20T12:50:00.002-06:00

Steve and I were reflecting on this journey last night as we met with Ella's Make A Wish granters. It is hard to realize just what you are going through sometimes- you just do what you have to do to get through it. This is the video from our One Year Journey- modified from before.

Ella has asked for a Disney Cruise as her Make A Wish Trip. We are looking at going when she has completed chemo and has her port removed. Her trip will either be at the end of this year, or next May around her 7th birthday. It is really a special gift to be able to enjoy time as a family with no cancer worries. I am really looking forward to that day.
If you have ever made a donation to Make A Wish, THANK YOU! We are very grateful for your generosity.

Blessings~Katie

2012-02-08T13:35:00.001-06:00

Ella and her Dada sporting their poutty faces during recovery.

Ella had Clinic yesterday. It was a big clinic day and Ella had a spinal procedure and chemo. If you have read these post before, you know that spinal day is not her favorite. She knows she can not have anything to eat or drink until after the procedure and that she has to get a needle in her back. This time the night before clinic, she started asking me all kinds of questions that she hasn't really asked before. She wanted to know why they had to put the needle in her back instead of her port. She asked why it mattered if she ate, and why I have 4 eyes when she is done (while she is in recovery and the drugs are wearing off). All valid questions that I guess I should have known she would ask sooner than later.

Daddy went with us to clinic today, which was such a special treat. Her spinal didn't go as smoothly as it usually does. It took the Dr. some time to get the needle into her spine. Thank God for drugs. I always cry when she is done with the spinal. I also said a prayer during the procedure. Something about watching her spinal fluid drip into the tube....It is just too much. It also worries me that she was off chemo for over 3 weeks while she was in the hospital last month. I can't help but worry that any break in chemo gives the ALL cells a chance to grow. I know that it shouldn't, but hey- I'm her mom and it is my job to worry!

Her back was pretty sore last night, and she had a hard time sleeping. Also the steroids kicked in and she was wide awake from those. Lack of sleep combined with back pain kept her home from school today, but she is already better and has left me wondering if she should have gone today!

Only 2 more spinals and 1 more bone marrow aspiration left for Ella. This sounds so much better than 262 days left of chemo. We are starting to see the light at the end of the tunnel, and I am really elated! We got a call from Make A Wish yesterday and they are beginning to plan for Ella's trip. They will be coming to the house soon to interview her and see what she would like to do. She has big plans and 3 different ideas. So, we will see which one she chooses.

Ella's thoughts on not being able to eat or drink today.

Thank you all for your prayers and for following us during this journey.

Blessings~Katie

Sunday February 5th, 2012

2012-02-06T07:28:00.003-06:00

It's Super Bowl Sunday and I liked this little performance the best!

Ella Dancing

Clinic this Tuesday complete with Spinal and chemo.

Blessings~Katie

Thursday January 26, 2012

2012-01-26T09:05:00.002-06:00

Sitting together in the chair having blood drawn for counts! Green blankie is front and center!

My apologies. I posted to Facebook that Ella's counts went back up, and never posted to the Blog. Bad mommy!

Ella's counts shot from 188 to 600 to...............wait for it.................2600! so she is doing well and back at school. Going back to school was a bit of a transition, but she was Star Student in her class this week and was happy as a clam. Her teacher even sent me a text to let me know she was all smiles this week. Pretty awesome! It is like the last month never happened for her. How I wish I could let it go as easily as she seems to. That is one of the reasons I think kids handle this a bit better than adults. We know how things are "suppose to be" and we are disappointed when things are not as we expect them. I think kids have this wonderful "oh well" ability sometimes. Ella bragged to her class that she got "spoiled" when she was in the hospital, but I have not heard her mentioned once that it sucked that she was in the hospital for Christmas. I know that is the first thing that came out of my mouth when anyone asked me. So maybe this week I will try to be more like my daughter and adapt an "oh well" attitude!

Bear Necessities

I got an email from our Child Life Specialist yesterday with this photo attached. Notice that 2 of those cute smiles belong to my girl? This Year Bear Necessities is using 2 of Ella's images to help raise money and awareness for Pediatric Cancer. The bottom left picture was taken almost exactly a year ago. Crazy how much can happen in a year. Now, she has this head full of red curls! I am so grateful.

Blessings~Katie

Wednesday January 11th, 2012

2012-01-11T21:42:00.001-06:00

Ella had clinic yesterday. Her ANC was almost 600 again! YEA!!!! So, she got the all clear to go back to school. She also got reinstated for chemo. So after not having any chemo or drugs except antibiotics, she went back on full protocol yesterday and started school today. She will need to go back to clinic next Tuesday to re-check her counts to make sure the chemo didn't knock her counts back down.

Today, Ella shared with her class that she has cancer. We read the book "Why Charlie Brown, Why" to the class and treated them to doughnuts. Josh and Morgan came with as her support system and to answer questions. She used a duck and a doll to show the class how the nurses administer medicine into her port and she handed out "Cancer Butt Kicker" bracelets to all of her classmates. The hardest part for Ella was when I left. She was doing so well at school and now I feel like she has taken a step backwards. The hardest part for me was saying the words out loud that she has cancer.

When I left I went to the car and cried. Just leaving her there knowing she can get sick again, knowing that she was crying, not knowing if any of the kids would treat her differently now that they know. I am hopeful that they wont. Her class is so loving with each other. They were all genuinely happy when they saw her today, it was very heartwarming.

Tools we used to explain cancer

Thank you for all your prayers and comments. We really appreciate everyone's support! It is finally going to snow here and the kids are so excited. Enjoy the beautiful snow!

Blessings~Katie

Sunday January 8th, 2011- More than a teacher

2012-01-08T20:47:00.000-06:00

Meant to post this on Friday. Sorry for the delay!

Ella and I were so happy that it was 50 degrees outside today! Went went over to the forest preserve and gathered items to make a wreath for the front door, just like we did last year when we were stuck inside! She is in a good mood and we had fun on our walk. She even let me take a few pictures.

I had a great teacher in high school. His name was Mr. Thompson and he taught history. He was a great teacher in my eyes because he gave you a copy of the test the night before and said "Study this and you will do well!" To me he was a teacher who in a sea of other teacher seemed like he wanted you to succeed. Well, it took me till high school to have this great teacher, but Ella has hers now.

Adorable Bunny

Ella's teacher this year has a heart for kids. I know it is a total God Thing that she is Ella's teacher this year. She has personal family experience with Leukemia and she has been following Ella's story even before she knew she was going to be Ella's teacher this year. Above is a picture of Ella's Adorable Bunny. This bunny is currently sitting in Ella's desk at school and traveling with the class through the day. This way part of Ella is in class, even though she is not. Ella has not told anyone in her class that she has cancer, but now since she has been out for 4 weeks she wants me to help her explain to her class why she has been out. Ella's teacher has said yes to everything we have needed or asked for Ella without hesitation. I know Ella is not her only responsibility, so I can't even begin to tell you how grateful I am to have a partner in her education AND her health! It is scary sending your child to Kindergarten for the entire day, but even harder when they have cancer and have spent the last year attached to your hip. Knowing that any cough or sneeze could potentially be life threatening is very nerve racking. Knowing that Mrs. K has Ella's back makes it so much easier.

Thank you.

Blessings~Katie

January 4th, 2012- Clinic

2012-01-04T17:05:00.000-06:00

Morgan and Ella at clinic.

Ella had clinic today. They were checking her counts to see if she could go off of chemo hold. For the first time she brought her friend Morgan with her to clinic! It was interesting to see how different her personality was with Morgan there.

It was nice for her to have a friend to keep her company today, because clinic took longer than it should have. All they had to do was check her counts and we were there 3.5hrs. Crazy.So not great news, her ANC (Absolute Neutrophil Count)which tells us her ability to fight off infections is down to about 200. Anything under 500 is bad. So this means she is still on chemo hold, can not go to school and is on lock down until next Tuesday when she goes back to clinic. All we can do is keep her home and do our best to keep her away from any new germs or bacteria. It is worrisome, but there really isn't anything we can do but pray that her counts don't go any lower. Hopefully keeping her on chemo hold will give her body a chance to recover. Her body has been working pretty hard the past few weeks, but her mood is good and that is a good indicator to me that she is doing okay.

It has been kind of interesting to see her personality the past few days. She has been off of chemo for almost 2 weeks and no medication at all the past 2 days. You can see just how much the medication suppresses her personality. It will make me a little sad when she goes back on chemo, but only 10 months left!

Blessings~Katie

January 2nd, 2011

2012-01-02T14:51:00.001-06:00

Hi everyone.
Just sending a quick hello, and an update on Ella.
Ella is doing well! She is like a completely different child compared to last week. She still has a bit of a cough and crabbies, but otherwise she is doing really well. We kept Josh home today from school because we felt like so much of Christmas vacation was focused on trips back and forth to the hospital. So today we spent time as a family and snuggled on the couch.

Hope everyone has an awesome 2012!

Blessings~Katie

Friday December 30th 2011- Christmas

2011-12-30T21:39:00.000-06:00

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.

Blessings~Katie

Thursday December 29th, 2011- Home!

2011-12-29T21:43:00.004-06:00

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!

Blessings~Katie

Wednesday December 28th, 2011

2011-12-28T22:18:00.002-06:00

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.

Blessings~Katie

Tuesday December 27th

2011-12-27T18:05:00.000-06:00

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.
Blessings~Katie

Christmas 2011

2011-12-25T20:25:00.000-06:00

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.
Blessings~Katie

Friday December 23, 2011

2011-12-23T11:44:00.000-06:00

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 22nd

2011-12-22T10:32:00.001-06:00

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!
Blessings~Katie

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.

Thanks!

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

2011-12-18T09:18:00.000-06:00

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 16th, 2011

2011-11-16T22:54:00.000-06:00

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

November 15th, 2011-Clinic Prayer

2011-11-15T06:51:00.001-06:00

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.

Amen

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

2011-10-19T18:59:00.000-05:00

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 !!!!

Blessings!~Katie

Thursday September 22nd, 2011

2011-09-22T09:59:00.000-05:00

My Girl on her 1st day of school.

Ella started Kindergarten!

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

Blessings~Katie

CureSearch Walk September 10th, 2011

2011-09-16T09:23:00.001-05:00

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!

Blessings~Katie

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

2011-08-31T00:38:00.000-05:00

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:http://youtu.be/nweN9d5cTiI

Thank you for following Ella's Journey.

Blessings~Katie

Thursday August 25th, 2011

2011-08-26T00:17:00.000-05:00

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.

Blessings~Katie

Wednesday July 27th, 2011

2011-07-27T11:47:00.000-05:00

We were able to take a one week vacation over the 4^th 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.

Blessings~Katie

Thursday July 14th, 2011

2011-07-14T21:52:00.000-05:00

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( http://www.charlestillman.org/news_events.php?nID=17), 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.

Blessings~Katie

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

2011-06-28T19:51:00.000-05:00

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.
Blessings~Katie

Tuesday June 7th, 2011

2011-06-07T21:40:00.003-05:00

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.

Blessings~Katie

Monday May 30th, 2011

2011-05-30T22:11:00.001-05:00

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!

Blessings~Katie

Monday May 23rd, 2011

2011-05-22T22:20:00.000-05:00

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.
Blessings~Katie

http://clients.316photos.com/Personal/Ella-5yr-old-pics/17179168_tGbfNT#1302463869_q2XVZhM

Monday May 16th, 2011 Ella's Birthday

2011-05-16T20:31:00.003-05:00

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.
Blessings~Katie

Monday May 9th, 2011

2011-05-09T16:59:00.000-05:00

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.

Blessings~Katie

Monday May 2nd, 2011

2011-05-02T20:19:00.000-05:00

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.

Blessings~Katie

Friday April 29th, 2011

2011-04-29T17:37:00.000-05:00

Noah and his dad Will at the Cure Search Walk in October 2010.

Earlier this week, a friend asked me if this happening to Ella has brought me closer to God. I paused for a moment before I answered her. I considered saying "Yes", because I think that is what she expected me to say. I wish the answer was yes. I wish I was strong enough in my faith to say that my walk has grown so much stronger and that I am so filled with faith that it overflows into everything that I do. The truth is that I feel less close. Don't misunderstand,at times I can feel his hands holding my family- my child, but it doesn't leave me feeling closer on days like yesterday.

Yesterday at 5:24pm, Noah Rios lost his battle with cancer. Noah is the first "cancer" child I saw at Loyola. The nurses were transferring us to a room and there was Noah sitting on his bed, door wide open, without a stitch of hair on his head. I remember Steve and I looking at each other and thinking "Okay, this is what we are in for". I found out later that night that I knew Noah's dad, and he was kind enough to fill me in on what to "expect" as the parent of a cancer child.

I can tell you that I don't think I ever saw this child without a smile on his face. That right there tells me that God is near, but at the same time I couldn't help but kneal down by Ella's bed last night, hold her hand a heave uncontrollable tears quietly out of my body for Will and Becky's loss, and for the possibility that Steve and I could someday be in their position. What did they say to Noah's 3 brothers? What would we say to Josh? How do you not scream in anger at the world at the top of your lungs when you lose your child? How to you move forward? How then, do you not question God?

It goes without saying that no parent should have to watch their child die. No parent should be asked to administer drugs to their child that they know, can have long term side effects including: pain, loss of muscle, learning disabilities, bed wetting, liver damage, kidney damage, nervous system damage, sterilization, dental issues, heart problems, and immune system issues. No parent should watch their child go through all this, and for Noah- so much more to simply to lose the battle.

Much Love to the Rios family, and many prayers. I can not even imagine what they are feeling or thinking at this time, but I do know that Noah touched many peoples lives both directly and indirectly. That includes this family and everyone that I know that prayed for Noah, and continues to pray for the Rios family.

Blessings~Katie

Monday April 25th, 2011

2011-04-25T22:57:00.001-05:00

Happy Easter. I hope you and your families were able to take a step back from the hassle and bustle of everyday life, enjoy your time, and gave thanks for the blessings the Lord has given us by sacrificing his son.

Ella had a good week. She was tired easily this week and she is having some bowel issues, but overall she is still doing really well. We were able to head up to Wisconsin to spend time with family and Josh and Ella were so excited to play with their cousins this weekend. I love when they are all disconnected and just playing and laughing. Still no better sound in the world then children laughing in my opinion. I also realized how much I missed my nieces, and how much they have grown! It's so cool to watch them all play together, and watch the older girls kinda guide and love on Josh and Ella. I just love it. It was a very happy Easter.

We are looking forward to a quieter week. Ella went to sleep last night because I told her gymnastics class would come sooner if she went to sleep. Today she insisted on purple hair for the day- so we sprayed it purple. It was a big day because she went out in public without her bandanna! She finally has enough hair to feel confident without anything on her head. I'm so happy for her.

Blogger is having a problem uploading pictures, so I'll try again tomorrow.
I hope you all have a great week. It finally looks like spring in our front yard!
Blessings~Katie

Monday April 18th, 2011- You've got to laugh.

2011-04-18T22:43:00.000-05:00

The remainder of Ella's trip was good. She really started to miss her Dada, and was pretty eager to come home. We got to the airport with plenty of time before our flight. Grandma and Grandpa dropped us off at the gate and waited until the flight was marked "departed" before heading 1 hour back to their house. They loaded us on the plane and the woman who was walking on the plane in front of us dropped her suitcase on Ella. She just started crying, and since this happened at the front of the plane and we were sitting in the back, the people sitting by us just thought she was crying. I saw the eyes roll and knew this wasn't going to go well.

We sat on the plane with ground air for the first 30 minutes or so. It was about 90 degrees outside so it was really hot on the plane. They backed the plane away from the gate and as soon as they turned on the motors, the computers shut down. We sat for a bit and they told us we had to go back to the gate for a repair. After about an hour they pushed back again, and the same thing happened- computers shut down, and no air. So we sat on the plane and they announced they were pushing us back to the gate so we could go back into the terminal.

At this point it is 9pm. Ella needs to use the restroom. They told us to stay close to the gate, so we bee lined it to the bathroom. At this point I'm a sweaty mess and carrying my laptop, Ella's carry-on, and Ella through the terminal. We get into the stall and I yank the protective seat cover off the wall- it rips. So I take the 2 separate halves and place it on the seat for Ella. When she is done, I figure I better go since I have no idea when we will be getting back on the plane. We quick clean our hands and go back to the terminal. The desk was swarmed with people, so I decided to stand more toward the entry way of the gate so I could keep an eye on the desk without being in the middle of the mob. I must have been standing there for a half hour trying to decipher the announcements, which if you have traveled a discount airline lately you will know it is like listening to a radio station that you are losing signal on. Then Ella asked for her Dada again, so I call him so they can talk. I bend down to hand Ella the phone and I hear "crinkle crinkle". With a horrified look on my face I reached behind me to discover that half of the torn seat cover was stuck to my backside. Like a cheetah I reached around and attempted to seamlessly pull it off of my skin. When I did this it managed to rip, leaving the lower half still stuck to my backside. So, we go back into the restroom with Ella protesting all the way saying "I don't need to go!", with me explaining that I do. You just have to laugh at this point, because crying won't help! I don't know how many people saw the set cover sticking out of my pants, but none of them said a thing! AHRG! They ended up cancelling our flight at 11pm and Steve's parents came back to pick us up. We ended up flying out the next afternoon on a different flight. It was a very long night!

Healthwise Ella seems to be doing fine. Thank you all for praying for Noah. he is FINALLY home!
Have a good week.
Blessings~Katie

Monday April 11th, 2011

2011-04-11T22:39:00.000-05:00

Ella had clinic on Tuesday. Her counts were good, which made me feel better about bringing her to Florida. We also got to deliver posters for the kids finishing chemo- which the nurses loved! That was lots of fun. Ella was able to receive her chemo and her regimen it is to stay the same for the next month. She doesn't go back in until the beginning of May. This time chemo hit her a little harder. She was pretty tired and cranky for the next few days. She is also back on steroids (which ended on Saturday), so being cranky, moody AND hungry all week= no fun for Ella.
Our flight out of Chicago went very smoothly, except for the almost 2 hour delay getting out of O'Hare. I was very grateful that security didn't ask her to take off her bandanna- and so was she. Once we boarded the plane, the 2 woman behind us spent the majority of the flight discussing the people in their lives that have been touched by cancer. I am assuming that they saw Ella and this sparked their almost 3 hour conversation. I know it is rude, but I so badly wanted to ask them if they could PLEASE talk about something else. This trip was to get away from our reality of cancer and I really had no desire to know how many more people are affected by this "cancer". So, I stuck my nose in my book and Ella played her DS and I tried to take my mind off of it. It is amazing how well you can hear the people behind you on a plane.

Smile like this.....

This is the face of a very happy girl. She has been to the beach, gone to the movies, played, snuggled, played some more, had a daily full belly laugh, eaten yummy food, gotten new clothes, books, and the 3 girls got matching shoes and pedicures today. I called it spoiling, but I don't really mean it and I know Ella is grateful for every little thing. If she just expected this, and we gave her all this attention because she demanded it, that I think would be spoiling. But, she doesn't expect anything and she is just so happy. I think seeing her be that happy makes me want to do more things that make her just smile like that.

Matching Pedi's and shoes that sparkle.

We leave here on Wednesday, and we both miss Josh and Steve pretty bad. We are looking forward to coming back when everyone can be here together later in the year. I am pretty sure that Ella wants to go to the beach one more time before we go, and I am sure Grandpa and Grandma will oblige.

If you have been praying for Ella, thank you. Also, her buddy Noah is now 26 days in the hospital. Please continue to pray for him and his family.

Blessings~Katie

Monday April 4th, 2011

2011-04-04T09:13:00.001-05:00

You will notice a certain lack of pictures for this weeks post, because we were too busy just having fun! Josh was off of school for Spring Break, so we had movies days, bounce house, play dates, overnight at a hotel, Woodfield Mall, and bowling to wrap up the week. While the boys got to swim at the hotel, Ella and I did a spa day. By that I mean I painted her fingers and toes while she watched Sponge Bob and drank milk.

We also went to Woodfield to buy an Easter Dress and a new Build A Bear. She is so excited that her Birthday Party is going to be there next month. The staff there is really sweet and they all recognize her when she comes in. Health wise we managed to stay healthy when it seemed like everyone we knew had a cold at the beginning of the week. Thank God! It is so hard to balance my desire for her to have a fun normal life, with my desire for her to not get sick. I can't tell you how much hand washing and Purell we use on a daily basis!

The one thing that was missing from our week was Jesania. Half her family was sick, and she wasn't feeling well so she wasn't able to come spend the week with us. If you don't know who Jes is, she and I have been in Big Brothers, Big Sisters together for over 7 years now. She has become part of our family, and has her own room at our house.

The reason it was super hard to not have her here this week is because we recently found out her family is moving to Texas. While I want to be happy for them, my heart is so saddened and broken that I will miss out on the rest of her life. I have not had the heart to tell Josh and Ella yet, mostly because I don't know how to. They look at her like she is a sister. Every time they walk past her doorway they make a comment about their "Fluff Fluff". She will be here until school is done this year, and then she is off to start High School in Texas.

Jesania's empty room

Jes just picked out this color for her room, and the comforter. We spent a good part of Christmas Break getting the room painted and finished. I know she will always be a part of our lives, even in Texas.

Ella has clinic tomorrow. If her counts are good, we leave for Florida this week to see Grandma and Grandpa! As long as she doesn't have a hidden lingering cold, her counts should be ok. The chemo she is on right now is not "suppose to" have a huge effect on her counts. So, we are hoping it doesn't. I am nervous about flying with Ella. Getting her through security with a piece of metal in her chest, and a bag full of meds (pills and liquid)....just not looking forward to it. Let me assure you, if a security guard gives her a hard time, this momma bear is going to show her claws! I also hope she doesn't have to take her bandanna off to walk through security. She is still so self conscious without it on. I know- deep breath and worry about it when I get there!

Tonight some very talented and crafty ladies from my church are helping me make posters for the kids at Loyola. When they are finished with Chemo they don't have anything at the hospital to help them celebrate. So we are making "NO MORE CHEMO" posters for the nurses to hang up. Thank You Ladies!

Have a Happy and Healthy week!
Blessings~Katie

Monday, March 28th 2011

2011-03-27T22:37:00.000-05:00

What is it about a sleeping child that just warms your heart? I came upstairs tonight exhausted and found my Ella sleeping in our bed. All I could do is just stare at her and be in love with this little girl. I am so grateful for her. She is stronger than she will ever know. I wish I was better at putting into words the depth of my love for my children, but if you are a parent or love a child, you already feel what I am struggling to say.

Ella had a good week. She read books with daddy and got to play with Rachel- who made her laugh with silly faces! She talked about her gymnastics class all week and counted down the days till she gets to go again. Josh got his gold belt for karate and we are thrilled that he is on Spring Break this week. I love having him home so he and Ella can play together and just have fun.

I am hoping that you can see her hair growing back in this last picture. She has all this fuzz right on the top. She checks out the growth every day. She can not wait till it grows back. I can't imagine the kind of battle I will have on my hands when I try to take her in for her 1st trim. Here she is eating grapes and trying to say 2 at the same time. It turned out looking like she was saying peace.

If you are praying for Ella, thank you so very much. Can you please add Noah Rios to your prayers? He just found out that he has more tumors and has to begin his journey all over again. His site is www.noahswarriors.com if you would like to read about his journey or donate to his family.

Blessings to you all~Katie

Monday, March 21st, 2011

2011-03-21T13:49:00.000-05:00

Just a plain old boring week at the Van Gheem household. A few seconds ago Ella informed me that we HAD to paint her nails because her toes were starting to chip! In the picture above she is wearing her new leotard for gymnastics class. Today Ella took her 1st class, and she really loved it. She has been asking me for the past hour when her next class is and she just asked me how to write "Ella is so pretty in her new leotard". She has been in a good mood and I think her week of steroids if finally wearing thin. No medical issues for Ella this week, so we are very grateful for every boring/healthy day. It was so cool to see her smiling and playing with other girls today. I think she only looked up once to smile at me.

This week we booked a ticket for Ella to fly to Florida to see Grandma and Grandpa. Since she couldn't go last time, now she gets her own special time with them. Not too shabby that I get to go back to Florida too. She has plans to collect no less than 6 buckets of shells, and decorate them all with glitter glue. She also wants Rainbow Sherbet. I have a feeling she will be able to do whatever she wants for the 5 days we are there. Next week Josh will be on Spring Break, and it is starting to look like spring around here. Ella and I planted a bunch of seeds 2 weeks ago and they are growing fast! We also had our first flower come up, and Ella was so happy that it was purple.
Looking forward to many more boring days.

Blessings and Much Love~Katie

2011-03-14T11:00:00.002-05:00

Ella had a good week. She had clinic on Tuesday and her ANC was JUST high enough for her to begin her final phase! YEA!!! She had a spinal and 2 chemo treatments. Then we went over to the zoo and I pushed her around in the stroller to look at the animals and get some fresh air! They take her off restriction during this phase, which means she can go to school, church and eat certain foods again. We went to the store that night for grapes, strawberries and blueberries. It was so cool to see how happy she was just to eat a blueberry.

Ella also got to go back to church this week, and go to Sunday School. I was really nervous that someone would ask her about her hair, and she would get upset. But, she did great and when I saw her, one of her older friends, Kate, had her arm around her in a very protective manner and was sitting by her. It was very sweet.

Today she decided to clean her room as a "surprise" and she made her bed all by herself, so I snagged this quick picture of her on her bed. Ella doesn't have to go back to clinic now until April, but we now give her chemo at home on a daily basis until October 2012.

We are doing the local Relay for Life and walking for both Ella and her Auntie Carrie who has colon cancer. If you are interested in walking, or just donating, please sign up. I will attach the link below. Our Team name is Cancer Butt Kickers!

Have a great week!

Blessings~Katie
Relay for Life

March 7th, 2011

2011-03-07T09:06:00.000-06:00

Hair is growing!

If Ella had hair, There is no way you would guess she has cancer right now. And, her hair is starting to grow back.
She had a good week, nothing unusual, lots of playing and lots of dancing. We stayed in this week since her counts were low at clinic. She sis get to play with her friends and she spent a lot of time with Pickles (Sara) this week. Sara is my sanity saver. Thank you Sara!

We signed Ella up for Cheerleading this Saturday. Her BFF Morgan is in it, so she wanted to do it too. It doesn't start until the fall, but I am still nervous about her doing it. When Steve asked her what she liked about Cheer, Ella responded "The Outfit!". Ahh, that's my girl. I still don't know how that happened when I don't wear make-up and most days you can find me and variety of colored GAP sweatshirts.

Last night we had a picnic dinner in the living room. Ella packed everything in her lunch box and took it over to the blanket. She told everyone where she wanted them to sit and we ate on the floor. Then the kids spent most of the night playing with a train set. So, overall- Good weekend.

We got a call from Lifesource Blood Bank this week. They asked us if they could use the commercial we made for church to inspire blood donations, as a commercial. We signed the release forms and they will be playing it in Palatine, IL soon. We are glad that some good can come from all of this. Remember....donate!!!

Tomorrow we have clinic again. If her counts are good this time, she will officially be on Maintenance! She will also have a spinal to make sure the cancer has not gotten into her spinal and cerebral fluids, and of course chemo. I was talking to someone this weekend and they said I was strong. Ella was listening and I heard her say "And I am Brave!". Yes you are baby, yes you are!
Blessings~Katie

March 1st, 2011

2011-03-01T18:12:00.000-06:00

Here is the link to the video with Ella's picture. It totally made me well up because the little animated girl has red hair like Ella did.

We had clinic today, but Ella's counts were not high enough to start Long Term Maintenance today. It's so hard because on one hand I am glad she didn't have to have a spinal, on the other I also want her to get the medicine she needs to NEVER have to go through this again.

Bear Necessities is a wonderful organization. The money donated goes directly to families and research. Please consider them the next time you make a donation!!!

Blessings~Katie

Week of February 21, 2011

2011-02-27T22:17:00.000-06:00

Family Photo

Ella had a good week. We stayed in the house all week to make sure we gave her blood counts a chance to recover. She was so sick of being in the house when we took her for a ride on Saturday, she was begging us not to go home but to just go shopping to look at stuff. One of her BFF's had her birthday party on Saturday too, so we let her go to the party.

She had fun playing and she got to decorate her own apron, cake and pizza. When I went to pick her up she didn't even see me come in. She was too busy hanging out and watching Morgan open her gifts. I just stood back and watched. When the gift crowd started to disperse, I saw 4 little girls go over to Ella. During the gift opening Ella had taken off her hat. They noticed, and went over to ask her what happened to her hair. I saw it happening from across the room. I saw the look on Ella's face and knew immediately what they were talking to her about. She looked and me and started crying. She ran over and said "Mommy, I NEED my bandanna!" I carried her out of the room, but by that time we were both crying. The girls followed us out of the room and asked me what happened to her hair. I panicked a bit, then I thought I would be all funny and try to make light of the situation. I told them her hair was magic and she decided to take it off and grow purple hair. It only took a second to see by their blank stares that they were not buying that answer, and the look Ella gave me said she didn't know what the heck I was talking about. So I told them that she was on a special medicine that made her hair fall out and that it would grow back soon.

It took her all of 2 minutes to recover from that little incident, but it took me 2 hours. We haven't had her in a situation where she was with new kids that didn't know, we never prepared her to be asked questions because we have always headed those questions off by talking to the parents of her friends. I know I can't protect her from it, but I wish we had done a better job preparing her for questions.

Later on Saturday we had a friend from church come take some family photos for us. One of my favorites is above. We were also lucky enough to have Jesania over for a few days too. I took this shot of her that I just love. Ella was so excited that Jes was coming over for the weekend. She really loves her "Fluffy". We all got to go to church together today, and that was a really nice treat. Steve and I have been splitting going to church for the past few months, so actually going together was awesome!

Jesainia

We have clinic again on Tuesday. Hopefully Ella's counts will be good, and she can start the next phase of her treatment. She gets a spinal and chemo on Tuesday, but then she will get chemo nightly at home and not have to go back to clinic for a month! I hate giving it to her at home, but glad that she will have a little bit of "normalcy" soon. We even saw some super tiny little hairs growing in on her head tonight! YEA!

Blessings~Katie

Week of Feb.13th

2011-02-21T14:43:00.000-06:00

If you have stayed with us over the past week, thanks for coming back and checking in! I am going to start checking in once a week unless something is going on with Ella. My hope, is that...this is getting boring!

Josh and I left for Florida on the 13th, and Steve and Ella spent the week together. For Valentine's Day, Ella came up with a list of things she wanted to do, and they spent the day marking them off one by one. You can see her pancakes and pizza above. Everything Steve cooked had to be heart shaped. They best Valentine's Day gift for me was how Steve spent the day with Ella.

On Tuesday Ella had clinic. Her red, white and platelet counts were all low and she needed a blood transfusion. Ella fell asleep at clinic during her transfusion because her reds were so low. When she has a transfusion she has to stay for a bit afterwards to make sure she did not have a reaction. They were at Loyola from 9am-5pm. Long day for daddy and Ella. thank you again for those of you who have donated blood! The rest of the week they had to stay in the house to make sure Ella stayed healthy. Steve got to play Barbies and Build A Bear for hours this week. Gold Star for daddy.

Josh and I had fun in Florida. We did Disney and Epcot, but the first thing we did was decorate shells with glitter and send them home to Ella. Josh had 3 adults catering to his every need. He was a pretty happy kid all week. Grandma and Grandpa spoiled both of us pretty good this week, and I am so very grateful to both of them. They decorated our rooms for Valentine's Day too. I even got flowers, heart pillowcases and little heart towels in my bathroom. Thank you Grandma and Grandpa.

There is a great foundation that works to take care of the families of kids with Cancer called Bear Necessities. They asked to use Ella's picture to help promote their foundation and raise funds. So, we took a bunch of photos for them of Ella with their signature bear and soon they will be in a video. Here is one of them above. She was in a really good mood when we took these and she has nick named this bear "Fuzzy". As you know, Ella loves bears. So, kinda neat for Ella!

Steve and Ella picked us up from the airport. I don't know why, but it was kind of a shock when I saw Ella in the back seat with her shiny little cue ball head. I don't know why it took me by surprise, but I just started crying. It is just such a visual reminder. She was trying so hard to stay awake in the car on the ride home. When she realized she was falling asleep she started crying and staying "I wanna snuggle with Momma!". I had to promise her I would still snuggle even if she fell asleep so she would stop crying.

Ella doesn't have clinic again until March 1st. If her counts have gone up, this will mark the beginning of Maintenance for Ella. It is the longest phase of her journey (almost 2 years) but it is also the last. She will only have to go in once a month to clinic for chemo and take it daily at home. This phase is also a little scary because I won't know what/where her counts are for an entire month, and that uncertainty is scary.

I started working on making Ella's blog a book. When she is done, I am going to have it printed and save it for when she is ready to read it.

Thank you to everyone for your continued prayers, support, and words of encouragement.

Blessings~Katie

Day 165, 166 & 167

2011-02-11T20:17:00.000-06:00

Ella is taking this round pretty well. She still insists that we "smell her stinky feet" whenever we give her oral chemo, so I thought this picture would be fitting! We have hung out at the house for the past few days, read lots of books and played with lots of Barbies. Tonight will be the last time Steve will have to administer chemo at home through her port.(YEA!)

Josh and I leave this Sunday for a little vacation with Grandma and Grandpa in Florida. More than anything, I am looking forward to SLEEPING! How sad is that. If I can do it in the sun, even better. Ella hasn't questioned that we are going without her and is really looking forward to spending this time with her Dadda. Her list of things she wants to do with him is growing.

So, the blog will be a little empty the next week or so. Ella has a check-up on Tuesday, but has a 2 week chemo break after that. I can see a flicker of light!

Thank you again to all our friends, family and prayer warriors who have stayed with us these past 6 months. Your love and support means the world. I well up with tears when I think about all the people who are out there praying for Ella and our family. Thank you.

Blessings~Katie

Day 164

2011-02-08T21:32:00.001-06:00

I love her happy eyes.

Ella had clinic today. Her counts were not "great", but they were okay. She got her meds, but they forgot her anti-nausea medicine, so we had to wait for a bit so we could get it in her before we left. She was happy to add another Build-A-Bear to her collection. We made a very quick trip and she stayed in her stroller the entire time. Her port or "medicine button" is accessed with a needle right now, so she doesn't like to move much. She is very protective of that area of her chest.

Now, she only has to go to clinic the next 2 weeks so they can check her counts and she won't have any chemo after Friday. We are getting closer....

She asked to go to bed tonight and I expect her to be tired the next few days, but she is handling this round so well. Her strength is greater than mine.

Ella and Dadda

I'm so happy that we are close to the last phase, but I wish it didn't last for almost 2 years. It is so scary to me that we have to give her chemo at home for such a long time. She will go in monthly for chemo and then every 3 months for a spinal and additional chemo. What is even scary is the long term side effects of the chemo. I had a brief conversation with one of her doctors today about the most common ones. Heart, dental, various organs, and fertility. Those are just the common ones. Cancer sucks.

Blessings~Katie

Day 163

2011-02-07T22:49:00.001-06:00

Ella had a fun day today. She was in a good mood and got to play with Sara this morning (while I got my first haircut since last April), and she played with Rachel this afternoon. She was feeling good and had lots of fun! That makes it a good day.

Tomorrow is clinic, and it is her last "major" clinic day before she goes to the Maintenance Phase! YEA. I'm so happy, I kinda feel like crying. She will get to do normal things soon. We still need to be cautious, but she gets to be a normal kid (insert happy dance here!)

Blessings~Katie

Day 161 & 162

2011-02-06T20:11:00.001-06:00

Overall, Ella did well this weekend. She had more energy, definitely more energy! She melted down on Saturday night, then the entire family melted down. Then she got sick later in the evening, but she woke up this morning just fine. She has clinic again on Tuesday. We really hope that her counts are good, because it is the last day for this phase and then we get to go to Maintenance! 629 days of Chemo left.

Ella has gotten really brave about not wearing her hat. Steve and I took her to Home Depot. All bundled up, with this cute new hat on (see picture) to run in and look for a handle. We were walking through the store, and I turned around and her hat is off. It was interesting to see others reactions to her shiny little head. Some gave looks of understanding, other just looked scared. It did make me wonder what they were thinking. If they would let their cancer kid run around without a hat on, or even be out in a store. It's not the first time I've thought about how we are doing "this". I'm not perfect. All I can do is try to give her a little a little bit of fun and normalcy while she is going through this. Trying to remember that this is her journey, and I'm sure that everyone would handle it differently.

The one thing that I hope, is that both "Understanding" and "Scared" would not judge us for the way we are taking this journey unless they have walked through a store with their bald child.

Some of Ella's Grandma's friends made this cute hat for Ella, and a matching one for me. So far, it is the only hat she will wear. It is so soft and I think she likes that I have a matching one and can wear them out together. On the upside, it covers my bad hair days!

Josh and I are counting the days til our special trip to visit Grandma and Grandpa in Florida. As soon as Ella is done with this phase, she gets a break before the next and final phase. So Josh and I are going to take a break and go to Florida while Ella and Dadda spend a special Valentines week together. She already has big plans for her Dadda. When she overheard that Josh and I were going, she said "Are you going to Florida with Joshie?" I think everyone in the room froze. We were all waiting for her to have a complete and understandable melt down. Instead, she said "Okay, but bring me back some glittery shells if you go to the beach". Pretty mature reaction for a four year old. Just love her to death!

Hope you all had a good weekend.

Blessings~Katie

Day 160-Swimming

2011-02-04T09:05:00.000-06:00

This song was shared by another Cancer Mom whose daughter just completed her 2years+ of chemo and procedures, and came out the other side.

Here are the words:

You gotta swim
Swim for your life
Swim for the music that saves you
When you're not so sure you'll survive
You gotta swim
And swim when it hurts
The whole world is watching
You haven't come this far to fall off the earth

The currents will pull you
Away from your love
Just keep your head above

I found a tidal wave begging to tear down the dawn
Memories like bullets they fired at me from a gun
A crack in the armor
I swim for brighter days
Despite the absence of sun
Choking on salt water
I'm not giving in
I swim

You've gotta swim
Through nights that won't end
Swim for your families
Your lovers
Your sisters and brothers
And friends
You've gotta swim
Through wars without cause
Swim for the lost politicians
Who don't see their greed as a flaw

The currents will pull us
Away from our love
Just keep your head above

I found a tidal wave begging to tear down the dawn
Memories like bullets they fired at me from a gun
A crack in the armor
I swim for brighter days
Despite of the absence of sun
Choking on salt water
I'm not giving in
I'm not giving in
I swim

You gotta swim
Swim in the dark
There's no shame in drifting
Feel the tide shifting
And wait for the spark
You've gotta swim
Don't let yourself sink
Just find the horizon
I promise you it's not as far as you think

The currents will drag us
Away from our love
Just keep your head above
Just keep your head above
Swim
Just keep your head above
Swim, swim
Just keep your head above
Swim

Although she won't do it in a pool, my girl can SWIM!
Blessings~Katie

Day 159

2011-02-03T23:11:00.000-06:00

Ella did better today, she had a little more energy, but not much of an appetite. She doesn't like moving too much with her port access in and when she does walk, it is very hunched over. She was scared when it was time to give her the chemo today, but Steve did a great job.

Here is what her accessed port looks like.

Can't really blame her for being afraid to move. Her face and belly are still swollen from the steroids, but it has been going down. Today I made a comment about her losing her hair, and she was sure to let me know right away "I didn't lose ALL my hair!" She's still feisty!

Blessings~Katie

Day 158- The Storm

2011-02-02T18:42:00.000-06:00

Well, Thank God, we had power all night long. Everyone slept in our room last night and listened to the wind bang against the windows. The snow looks so cool! I took our dog for a walk and she had so much fun. This was the only time I left Ella's side today.

Ella stayed in our bed until 5pm, then moved down to the couch. She is really tired and sat slumped when she did have the energy to sit up. We played Barbies in bed and read more Rainbow Fairy books. She has a lot of meds in her right now and we really have to stay on top of the anti-nausea medication. They warned us that once it starts it is really hard to get it to stop long enough to keep the anti-nausea medication down. She ate very little and we doing our best to keep her hydrated.

Hanging in there.

Blessings~Katie

Day 157

2011-02-01T20:15:00.000-06:00

Ella had clinic today. Today was the FASTEST we have ever been through clinic, especially considering she had a spinal and 3 chemos, plus she was scheduled to have 3 hours of hydration. Ella's counts came back good, so they did her spinal.

In recovery from the spinal

Then, the staffed work really hard to get us the "heck out of Dodge!" They decided to train Steve to administer the chemo instead of keeping us at Loyola till Thursday. They had scheduled a nurse to come to the house, but she cancelled because of the weather. She was also scheduled to receive 3 hours of hydration, but they gave her 1 and had us hydrate her for the rest of the day. We were out of there by 2pm.

Can you believe after 3 chemos and a spinal, she is still awake right now and playing flashlights with her brother? If you live in Chicago, you are probably doing the same thing we are right now- hunkered down in the house and praying that the electricity doesn't go out so you can keep the house heated! School has already been cancelled for tomorrow and Josh is so excited! I am too. I love when we are all "trapped" in the house together. Granted, if it is more than 24 hours we will probably be climbing the walls, but it is a great excuse to spend family time together.

I kinda see this as day 1 of the last 14 "hard" days of treatment. It's like a light at the end of the tunnel.

Stay warm and enjoy this time with your family.

Blessings~Katie

Days 154, 155, and 156

2011-01-31T08:18:00.001-06:00

Ella had a good weekend of special time with daddy, Jes and Auntie Carrie. Joshua and I spent special time at the Field Museum in Chicago.

Josh and Maggie at the Field Museum in Chicago

We got to spend the night at the museum with one of my oldest friends(and by that I mean we have been friends since 5th grade), and her daughter. Josh and Maggie were born just weeks apart and they get along really well. It was a lot of fun and we got to sleep right next to the bears, rams, and birds. We spent the night running around with flashlights and walkie talkies, just hanging out and chatting as Josh and Maggie ran around and played lots of hide and seek. I really recommend it as a fun learning experience!

Josh and Maggie

Ella and daddy ate popcorn, make pizza from scratch, and watched a movie. In the morning they had a special breakfast from Panera. When Josh and I got home on Saturday we turned around and left again for a birthday party and he totally fell asleep in the car. When I woke him up to ask him if he wanted to go over to a friends house to play he said "No, I miss Ella and I wanna go home and play with her.....because I love her." he really earned so major brownie points with that one! So they played all night and as soon as they woke up on Sunday they picked up where they left off. I feel very blessed that they love each other so much.

Sunday Ella got to see Jesania and Auntie Carrie, which totally made her day! So basically, she played all weekend. Not so bad!

Yes, there are hot dogs on her head!

So, now we just pray that the week was enough time for her counts to recover so we can get this last half of Delayed Intensification over with. We are not looking forward to tomorrow, but I know that puts Ella that much closer to being done. 636 days left.

Blessings~Katie

(I Peter 5:7) casting all your worries on him, because he cares for you.

Day 152 & 153

2011-01-28T14:21:00.000-06:00

Ella is doing just fine these past few days. She has had TONS of energy during the day and lots of personality too. This is the first day that she has been okay without having a cover on her head. Considering that last night she cried when I put her to sleep because all she wanted was "long hair that tickled her back", I was surprise to see her run around today without anything on her head but a bow. Good day.

Yesterday hit me like a ton of bricks for some reason. The reality of it all is just harder some days that others. 638 days to go.

Have a good weekend.

Blessings~Katie

Day 151

2011-01-26T20:45:00.000-06:00

Today my girl is:

smiling

sipping lemonade from her favorite cup

laughing

singing a song that sounds so sweet coming from her lips

coloring with stencils

pushing books in my face to make me read to her

happy

yelling at me to pay attention to her and get off the computer

playing with me

letting me plant gentle kisses on the top of her soft head

sitting quietly and resting

eating her third waffle with butter for the day

snuggling with her dada

here.

Blessings~Katie

Day 150

2011-01-25T20:47:00.000-06:00

Bath Time!

You may not be able to tell in this picture, but she is smiling! Ella's counts were not where they needed them to be, so her treatment was deferred and she has this next week off as her body recovers. She got to come home early and have another play date, so she so a pretty happy girl.
We got some good news today. When we started this journey, the protocol they put Ella on listed another phase after this one before she would be able to begin the final and longest phase. We found out today that when this one is over, she can go right to the final phase! YEA!!!! Most likely her hair will grow back in that phase and she will only have to go in for chemo 1 x a month. She will still have to take it orally at home daily, but clinic 1 x a month- hey, not so bad!
So, we are going to take it easy for the next week, and try to mentally prepare for next Tuesday. Thank you all for your prayers for today- and everyday!

Blessings~Katie

Day 149

2011-01-24T22:39:00.000-06:00

Ella and Rachel

I can’t tell you how happy Ella was today. Both of her neighborhood BFF’s wore bandanas on their heads today. First thing this morning Morgan came to the door before school with one on and today Ella got to play at Rachel’s for 4 hours and she and her brother had one on too. Ella was so excited to go over to Rachel’s and play. She didn’t want to come home when I went to pick her up. She ate so much food today. Before 9 am were making fresh bread and she had eaten 3 times. Tonight she had 3 dinners and is still up and eating because she knows she can’t eat tomorrow morning. I was so hoping that her friends wearing the bandanas would help make her hair loss easier. Tonight I was in my room and she screamed for me. I ran into the bathroom and she was crouching in front of the bathroom vanity holding her head. When I asked her what was wrong, she said she needed her bandanna. She stayed down and wouldn’t look into the mirror until I had her du rag on her head.

This is going to be the roughest week for my baby. Not only is tomorrow full of drugs, she also has a nurse coming to the house for the 3 days after that to give her Chemo.

Tomorrow’s agenda of procedures and drugs:

Access port and draw blood samples

Possible blood transfusion

Doctor visit

Spinal Tap (no food till this is done)

Chemo into Spine

CPM Chemo for 30-60 minutes

ARAC Chemo for 15-30 minutes

TG Chemo by mouth

3 hour fluid flush

Home

Part of me hopes her counts aren’t good so she doesn’t have to go through all of this tomorrow. The other part of me hopes they are good so she can be one day closer to getting better. For as much as I hate these drugs, I am grateful that they are fighting the cancer. Please pray that her body holds out. 3 of tomorrows drugs are new and we have no idea how they will affect her.

Blessings~Katie

Day 147 & 148- Plus...Ella Kicks cancers Butt Video.

2011-01-23T15:55:00.001-06:00

Ella recorded this on Thursday.

She is doing well this weekend. We took her out to eat today since she will be confined to the house for the next few weeks. Right now she and Josh are happily playing on my bed and laughing. There isn't any better sound.

This morning I cut the rest of Ella's hair. She had these few straggling pieces that kept getting in her eyes and mouth. Since there isn't much hair, they are not weighted down and they fly everywhere. I asked her if she would like me to cut them, she said yes. When we got into the bathroom I acted very casually about it, like it was no big deal. Inside my heart was breaking. After I got one side done she was looking in the mirror and said she wanted to be done. I asked her if she just wanted to look at me instead of the mirror, she said yes. Now, she just has a few little baby hairs on the top of her head. Today they are being covered by a Tinker bell scarf. Steve pointed out to her that she doesn't have to worry about washing her hair in the tub anymore- now she can just play. That made her smile.

Blessings~Katie

Day 146

2011-01-21T19:54:00.000-06:00

Ella had a good day today, but I feel so sad for her. She is so frustrated with her hair loss. She won't take the du rag off, even at home. I hate that at 4 years old she is self- conscious about her looks. I know there is more to it then that, I just hate that she has to go through this.

Have a good weekend.
Blessings~Katie

Day 145-Du Rag Day

2011-01-20T21:39:00.001-06:00

Ella had a good day today. She was in a good mood and enjoyed doing her homework. We also read 2 more of the Rainbow Fairy books. Today was a purple Du Rag day, and I was told that I need to wear one everyday too. Ella looks way cuter than I do in a du rag. She can totally pull it off! The blog is having issues loading pics and video, but I'll put some up soon. We spent the night coloring in bed and I let her stay up a little later, hoping she might actually fall asleep in her room tonight. So far so good!

Blessings~Katie

Day 143 & 144

2011-01-19T22:36:00.000-06:00

Ella doing Homework

Ella had a better day today. Monday night she didn't sleep. No really, she sat in our bed, asking for food and watching the Disney Channel till 4am -then Steve took over. Tuesday night she slept, so today she was in a good mood and asked to do homework for almost 2 hours today. So, side effects for her have been insomnia, cravings, bloating, mood swings, hair loss and leg weakness. Really, not too bad. Except for the hair loss, it is kinda like she is already a teenage girl!
We spent a good part of the night last night making these cute colorful head scarves for Ella. Josh even designed one for her. We pulled out glitter, glue and jewels and went to town. It was our last night with grandma and grandpa so we hung out and got crafty! So looks like Ella and I will be wearing these for the foreseeable future. She isn't so much into hats right now, so this is a good option.

Next week will be one of the toughest for Ella. She has a long day of procedures on Tuesday and then a nurse will be coming to the house Wednesday, Thursday and Friday to give her chemo. Tuesday she has a spinal with chemo, then a new chemo that requires a 3 hour flush of IV fluids. Plus they warned us that there is a good chance that she will need a blood transfusion, which also requires a couple of hours to make sure she doesn't have a reaction. How much can her little body handle?

Please pray that her body holds up, but the Leukemia doesn't!

Blessings~Katie

On My Heart

2011-01-19T09:09:00.001-06:00

"Every tear I've cried, you hold in your hand."

Blessings~Katie

Day 142

2011-01-17T21:47:00.000-06:00

Ella had clinic with daddy, grandma and grandpa today. Since daddy had the day off, her wanted to go with. This was the quickest clinic trip ever for Ella because she didn't need chemo today- just a blood count and exam. She was off to Build A Bear by 11:00am. Steve took a few pictures today, but I'm not going to post them. She looks so unhappy, I just don't want that memory burned into any one's brain. I know it's the reality of her situation, but today I'm not in the mood for reality. So, I'll give you this one instead. it's a picture of Josh and Ella in Myrtle Beach, Ella's favorite place.

May 2009

I'd say today she has about 1/3 of the hair left that she had 2 days ago. She said she would like her dad to shave his head, but not until she loses all her hair. She would also like to have a pizza party to celebrate. If anyone else would like to shave their head, they are welcome to come over for pizza :-)

When I was brushing her teeth tonight she was just staring in the mirror and she was pissed. So, we started yelling at cancer in the mirror. It made her smile. We also gave cancer a good raspberry! Tonight she asked me to make her a purple shirt that says "Ella kicks cancers butt", she is stronger than I even realize.

She is sound asleep in our bed right now. She is happy that the weather is bad, because it means grandma and grandpa have to stay an extra day before they head back to Florida. So, she gets one extra day with her favorite playmates and I get to take a deep breath....ahhhh.

Blessings~Katie

Day 140 & 141- Loss

2011-01-16T16:50:00.000-06:00

This morning when Ella woke up the hair from the side of her head where she was sleeping, was gone. Just gone. Little hairs littered her pillow as a reminder of how many times she tossed and turned during the night. The back of her jammies, also covered in hair. I tried to get as much of it off of her as I could, because she was bothered that it kept getting in her mouth and eyes. She doesn't want to cut it. I think she doesn't quite understand because she thinks if we cut it now, it will keep it from getting long. All she wants is long hair.

This morning

She spent the day on the couch again. She fell asleep around 10:30 this morning in her bed for a nap. When she woke up, another pile of little hairs. We spent the afternoon reading the Rainbow Magic series, on the couch. Then around 3:30 she HAD to have a McDonalds cheeseburger, so I ran out to satisfy her craving. She hasn't been as hungry this round of steroids. But, when she wants something, she WANTS it! I'm glad she is done with the Portillo's phase, because there is not one close to our house!

After nap

I don't know why the hair thing is so hard for me. There is just no way to not look cancer in the face ever second when the face smiling back at you looks so different because of it. It is a constant reminder that this thing is trying to take over my daughters body and I am nothing more than a mere bystander. I hate it.

Ella has clinic tomorrow, but it is only to check her counts. No chemo until next Monday. Next Monday will start the 2nd half of this part of treatment. I sooooo can't wait for this next part to be over, but I can't wait for the whole thing to be over.

Look at that beautiful smile.

Blessings~Katie

Day 138 & 139

2011-01-15T10:50:00.001-06:00

Ella is really tired. She has had a permanent spot on the couch downstairs this week. She had a bit more energy yesterday, but it wanes. She has been napping everyday and she doesn't even want to ply with her build a bears. She just wants to "snuggle". Snuggling has become my full time job.

She is losing a lot of hair right now. This is the hard part, because she wants long hair so badly. Today we used Joshie's Karate punching pad to punch anger out on cancer. She said "I don't wanna lose my hair"- and punch, followed by "gooie gooie"- punch! Everything she doesn't like is gooie. Just like the IV pole at clinic, it's gooie too!

I just want to thank everyone who follows this blog, and cares enough to keep us with our journey. We have over 20,000 hits on this blog. To me, it;s not just a counter, but a marker of love. So, THANK YOU ALL!!!!! We are so blessed!

Blessings~Katie

Day 137

2011-01-12T21:53:00.000-06:00

This is not my happy girl.

Ella had another rough day today. She was just so tired and moody. One minute she would be crying because she was hungry, but couldn't tell you what she wanted to eat. Then she wouldn't be hungry anymore. She took a nap against her will this afternoon, then asked to go to bed again this evening. This is not my happy girl. This is not my four year old who loves to sing and dance and shake her booty. This, is not fair.

I'm working on grieving and letting go. See, I had big plans for this past fall. My two beautiful children were going to be in school full time and I was going to have the days to myself. I had goals, I had plans, I had things to accomplish! Now I am working on understanding that my full time job is not just being Steve's wife and mom to Ella and Joshua, but also Ella's caretaker. This was not part of my great and grand plan for this school year, but I am learning to accept it...okay, just trying to accept it. If you know me, you know I'm a I'm a "doer" and not being able to do much besides cancer is killing my mojo!

If your interested in doing Relay for Life this August and joining the "CancerButtKickers" Team, let me know! We are walking in honor of Ella and my friend Carrie.

Blessings~Katie

Day 136

2011-01-11T22:09:00.000-06:00

Ella was really tired today. She napped and asked to go to bed at 8 tonight. Her eyes were so sunken in today and she was really pale. My girl was beat up.

Blessings~Katie

Day 135-Clinic

2011-01-10T21:22:00.000-06:00

Momma and Ella sitting in the chemo chair

Ella had clinic today. Her counts remain spectacular, and she had 2 chemo's today. Then she was off to Build-A-Bear for a bear and a new outfit. What am I going to do with all these stuffed animals? Anyone with a good idea on how to organize them- please let me know!

Grandma and Ella and her orange chemo

She is sound asleep now. Her little body was so tired tonight, but she just didn't want to close her eyes. I am grateful that her body is holding up so well, but I am grateful with my breath held in tightly. Still waiting for the other shoe to drop, for her to get really sick, or have a bad reaction. I feel like we are always on guard and fearful that something will make her sick. It is with tears in my eyes that I watch her sleep and breath and think about how strong/beautiful she is inside and out.

Forgiveness

What is it that makes others ask for forgiveness? What happens in our lives that makes us see the way did something or someone wrong in our past. Do we get hit with some lightning bolt of intelligence? Or do we just grow up? Since this has happened to Ella 3 people from my past have asked for forgiveness for things that happened years ago. I just find it interesting how this has come about. What about her pain, makes them remember pain that they have caused? The thing is, that it isn't really me they need to ask for forgiveness from, they need to forgive themselves. I understand that it is hard to forgive ourselves, sometimes we need to hear it from others so that we can get permission to forgive ourselves. If someone us will forgive us, then certainly we can forgive ourselves....right?

Forgiveness is a choice. It's not an easy one. For me it is hardest when the person I am trying to forgive isn't asking for forgiveness. When they feel they have done nothing wrong, or that their actions/words were somehow justified. Still, I pray, and ask God to help me forgive and try to be accountable for my own shortcomings (of which there are many). We have to choose to forgive others the same way God chose to forgive us. Sometimes its just a lot harder than others! I am definately a work in progress.

Blessings~Katie

Day 134

2011-01-09T22:21:00.000-06:00

Just an ordinary day filled with laughter. God is good.

Clinic tomorrow.

Blessings~Katie

Day 132 & 133 Happy Feet

2011-01-08T19:41:00.000-06:00

Happy Feet

Happy feet. These are Ella's Happy Feet that are playing on the floor with Grandma. Grandma and Grandpa came in tonight and Ella and Josh were bouncing off the walls with excitement. At the top of her feet is the new winter coat we bought her to fit around her swollen belly. As soon as it arrived today she put it on and it has now been on for 7 hours. Ella, is having a good day.

New Belt

Josh got a new karate belt today and he was so happy. When we were in the car driving back he said out of the blue "Mom, I'm gonna work really hard to get my solid belt!". He really enjoys karate.

Ella is doing so well. She is kicking cancers butt!

Please pray for Leann who is in the hospital on a respirator fighting a fungal infection that has spread to her brain(complication of leukemia). Her family needs our prayers. Thank you.

Have a great weekend.

Blessings~Katie

Day 130 and 131

2011-01-06T21:41:00.000-06:00

Josh and Ella

Ella is a ROCK STAR, and not just because she likes to "shake it!". We were able to take her off of the anti-nausea meds and she has been fine. She had a bit of a tempreture of, 100 today, but it went down to normal tonight. She is still having a difficult time sleeping, and she has been craving hot dogs again. We had to make an emergancy run to the store for hot dogs and "Cheesie Bunny Crackers". We had to get 2 boxes of cracker to make sure we didn't run out. It's funny because she is so demanding about it. Her moods are also swinging far and wide, but mostly she has been happy. Tonight she was happy just to snuggle in a chair with her brother and watch him play games, and explain them play by play to her.

Thank you all for continuing to pray for Ella and follow her journey.

Blessings~Katie

Day 129

2011-01-04T22:59:00.000-06:00

Ella, loves to wear her sparkly dresses

Ella and Morgan

Ella did really well today. She colored and played today and after school she got to play with Morgan. She was so excited to see Morgan's new haircut! She wanted a picture of the two of them with short hair.
She ate a lot today- 5 meals. She kept asking me "when is the next eating time today Mommy?" She has started sweating in her sleep from the steroids and wakes up a few times a night. But really, she is doing well.

Blessings~Katie

Day 126, 127, and 128- Happy 2011

2011-01-03T20:45:00.000-06:00

Ella at clinic

Happy 2011.

Ella had a very fun New Years Eve. She got to spend the night with her Auntie, Josh got to go to a kids party with neighborhood kids and mom and dad got to party with neighborhood adults! We also got to have Jesania with us for the weekend. Ella just loves her Fluffy!

So far Ella has not had a reaction to the Peg shots or the new chemo....Yea! She was pretty tired this week, but she isn't able to sleep well. Daddy took Ella to clinic today for her treatment and she doesn't need to go back until next Monday. Her counts were actually pretty good today which surprised me, but I am grateful.
Ella is looking forward to seeing her grandparents again this weekend! They are flying back to see her and go to treatment with her. I know everyone is looking forward to their visit. Her next treatment is next Monday.

Ella started losing her hair again today. I know she has been lucky to keep it as long as she has, and I am grateful, but it just is a reminder that we are stuck in "Cancer Land " for 2 more years. I was grateful that Steve was able to take her today so I had a day to do Non-cancer related things. One of the kids whose journey I have been following passed this weekend. A few more were hospitalized for fevers. When I read this, it does 2 things. 1- realize how lucky we are that Ella has only had 1 infection she had to be hospitalized for. 2- I realize what devastation this disease can do to families. I just wonder how we do two more years of this. Ahrg.

Blessings~Katie

Day 125

2010-12-31T12:52:00.002-06:00

Just wanted to wish everyone a Happy and Healthy New Year! I pray that 2011 brings everyone much happiness.
Blessings~Katie

Day 124- The Wisdom of Strawberry Shortcake

2010-12-30T19:32:00.003-06:00

Ella and her newest Build A Bears (or dogs)

I can't stress how much I really wished I did not fully comprehend what her procedures entailed. When we got to Clinic today Ella just kept saying "I'm scared mommy, I'm scared." What do you say to that? I told her I was right there and staying by her side, but this is the time when as parents we usually get to say "Don't be scared, I'm right here!" How on earth could I tell her not to be scared?

They did the chemo shots into her thighs today. 2 nurses came in and did them at the same time. We stayed for an additional hour to make sure she didn't have a reaction to the drug (PEG) and to go over the use of the Epi-Pen. When the nurse was talking to me, I lost it. I really try not to lose in in front of Ella. She was on my lap watching TV so she couldn't see me, but I still lost it. Maybe it's just a lack of sleep. Ella got up a total of 6 times last night between trying to go potty and not being able to feel her favorite blankie next to her. I have to keep the pen and Benadryl around for 3 weeks to make sure she doesn't have a reaction. So, I guess she will be sleeping in our room for the next few weeks.

So, we left Clinic and all Ella wanted to do was go to B-A-B. She didn't want to eat or go home- just Build A Bear. So, as I was driving, I was having the debate in my head again about material things and how I am struggling with always giving her "things" after clinic. In the van Ella and Jesania were watching Strawberry Shortcake. As I was having this debate in my head, I heard Strawberry say the following as I pulled into the mall "You may not need it, but you deserve it". And yes, today she definitely deserved it! I forgot to bring her stroller so we had to carry her through the mall, to B-A-B and back out to the car. Her legs are too sore to walk right now. My right arm is going to be HUGE when she is done with this! She got a new puppy and all of it's accessories.

She was watching Aurthur when we got home today and DW (his sister) was having minor surgery. DW ain't got nothing on my Ella!

Have a Happy New Year Everyone. I am looking forward to having dinner and drinks with friends!

Blessings~Katie

Peg information below written by Carrie Grage, Mom to Hannah http://hannahgrage.blogspot.com/ Thanks!

Day 123

2010-12-29T21:49:00.000-06:00

Ella bella

Ella did well today. same complaints- upset stomach and tonight she was getting mad that dinner was late getting to the table. "I want pizza!" was the chant heard at our house around 6pm tonight. She fell asleep early again tonight.
Clinic tomorrow. I expect it to be quick, but I don't know if they need to run her counts again. This procedure requires her to get 2 shots at the same time in both of her thigh muscles. It will not be fun.

I wish I knew how to explain to Josh about "fairness". So many times today he complained about things being fair. "Why does Ella get out of the car first?" or "Why does she get more play dates?" I feel like I have calmly explained to him so many times why things don't always seemed balanced between the 2 of them. He gets to do so many things that she just can't, but those don't seem to make it into the "It's not fair" equation. Please don't get me wrong, he has been such a good big brother, I just wish I could help him understand that what seems like "not fair" to him doesn't really come close to the 'NOT FAIR" of having cancer.

Blessings~Katie

Day 122

2010-12-28T20:47:00.000-06:00

Ella did really well until about 3pm today, then she got really moody and had a tummy ache for the rest of the night. Until 3 she was dancing around on my bed and singing along to KLOVE (see video above complete with messy bedroom). She demanded I snuggle with her from 5-7ish and then she fell asleep at 7. We had to wake her up at to give her the night time meds. Then it took me 45 minutes to get her back to sleep. She doesn't do "down time". She won't close her eyes and rest. She stopped napping before she hit 2yrs old. I have no idea where she gets it from (insert smilie face here).
Right now she is sleeping in our room, and I am hoping to sneak her into her bed shortly. Day 2 of Delayed Intensification done. Thank God.
Thank you so much for all your prayers. I was just reflecting today on what a difference prayer can make, and I feel it has made for Ella.
Blessings~Katie

Day 121 Clinic

2010-12-27T19:57:00.000-06:00

Meds for Ella's spinal today

Chemo drugs by IV for Ella today

Ella started Delayed Intensification today. This is the toughest part of her treatment. Her counts came back low, so the Dr. had them run a second time. The second time they came back above where she needed so they scheduled her spinal chemo and 2 IV chemo's and drugs for the day. We left around 3pm. Josh came with us today because he wanted to see what it was like. He watched them access her port and flush it. He and Aunt Carrie stayed outside the procedure room during her spinal and he got to play HOURS of his DS, which we normally do not allowed. He enjoyed beating his Aunt at racing games. When we got home he was like "WOW, All day driving and sitting at the hospital ." So, now at least he knows that Ella is not having fun all day while he is at school. We left the house at 8am today and got home at 5pm by the time we picked up her new medications.

Ella and Josh waiting for test results.

Ella fell asleep on the way home from the hospital today. I spent 45 minutes after we got home figuring out her new meds schedule and calling the pharmacy to figure out why we only got partial fills on 2 of her scripts. I am very grateful that we have insurance, but I wish it was simpler sometimes. Ella woke up and asked Josh to play Tea Party with her. They changed clothes and are currently are sipping "tea" in the playroom. He was a really good big brother today.

Ella woke up around 2am for about an hour. She just cries that she is scared, with no reason why. I don't question this much because she has every reason to be scared- I am too. So, I just laid in her bed with her, tried not to fall out and stared at the Christmas Tree in her room. She has ornaments with pictures from every year since her 1st Christmas on her tree. I could not help but stare at her picture from last year. Her red hair in pig tails with little curls at the ends. Big smile with matching big dimples on each side- so sweet and happy. I love watching her sleep.

My beautiful girl.

I wish I could put into words how I feel, but it all seems so selfish to me. Nothing I am feeling can possibly compare to what Ella is going through. What right do I have to cry when she goes from a spinal to having tea? Please pray that she doesn't have a bad reaction to her new meds during the next few days. She has to go back on Thursday for another treatment. This one is 2 shots in both of her thighs and we have to carry around an Epi-pen for a week to make sure she doesn't have a bad reaction to it.

The cool thing about today, is that we got her official end date today- 10/28/12! YEA!!!!!

Thank you all for your prayers and kind words, it really makes a difference.
Blessings~Katie

Days 118-120

2010-12-26T19:16:00.000-06:00

Our 2010 Christmas Morning Picture

Merry Christmas! We feel so blessed that Ella was in a great mood and able to really enjoy Christmas with us! She got to come to church with us, and to watch her singing and dancing to the music was AWESOME! We had such a fun Christmas Day. We opened all out gifts and hung out, then went sledding together. We finished off the day with an awesome meal that daddy made, and even had him cook it again on the 26th! Right now she is a happy little girl!

I know this is probably harder on us then on her, but she starts delayed intensification tomorrow. She has a spinal and chemo treatments tomorrow. I want to stop time so she can just stay ion this happy "zone", but I know that is beyond my mommy super powers.
So, please pray that she handles the spinal and the new chemo drugs well tomorrow. Pray that she doesn't get sick and smiles for at least a few more days.

Blessings~Katie

Christmas Prayer

2010-12-24T08:07:00.000-06:00

Please take a moment to pray for the following kids who will be stuck in the hospital this Christmas.

Skyler: http://crystalandskyler.blogspot.com/

Noah: http://www.caringbridge.org/visit/noahrios/journal

Amelie: http://www.caringbridge.org/visit/ameliedejesus

If you follow the links, you can read their stories. Thank you so much.

Gratefully Yours,
Katie

Merry Christmas

Days 113-117

2010-12-23T21:23:00.000-06:00

The one good thing about Ella having cancer, is how I have seen others moved to do something generous- whether it be for Ella or for anyone who is suffering through cancer. The really cool thing, is seeing kids reach out from their hearts to do something.

Alexis, an 11yr old girl from our church decided on her own, to do a toy drive for Ella's hospital. This young girl is not only a talented singer but apparently very good at talking people into doing things! She brought in bags of toys to church last week.

Ella's 13yr old cousin Emma made the decision to cut her hair to donate to kids. Being a young girl who is in middle school, a place where every physical attribute is looked at like a bug on a telescope, she made the brave decision to chop her hair off out of love for her cousin. And Emma- it looks awesome!

Morgan, Ella's 5 yr old BFF (for you boys out there without little girls, that is BEST FRIENDS FOREVER!)cut her hair for cancer too. Gotta love this kid. She asked her mom if she could shave it all off since Ella will not have any hair soon either. Mom said- let's just cut it short. She even wore her "I Love my BFF" shirt.

I can't describe how much love and joy fills my heart knowing that Ella is so loved. We are so moved that these kids want to make a difference, and that they have parents that allow them to make these big decisions and support them. How cool is that?

We all had fun on our family mini trip. As photographers, we are so bad at remembering to bring a camera to our own family things. Steve and I got 10 minutes away and realized we forgot to bring ours. Neither of us had the energy to turn around and add the extra 20 minutes to the ride- not to mention the 3 kids in the back of the van that were already asking how long till we get there. So, Steve took some pics with his phone, but that's all we got. Ella and I did a "SPA" day in our room and made a ceramic dog that she got to paint. Josh, Jesania and Steve hung out in the water park with our niece Sara and then we went to dinner with family. It was a fun time. Ella never complained about not going into the water park with everyone else. Pretty amazing for a 4 yr old.

I can't wait for Christmas. As you might have figured, we went a little crazy this Christmas and I can't wait to see their faces on Christmas morning. Ella has been counting the day's till Jesus has his Birthday!

Blessings to everyone this Christmas. I know that I look at every laugh and smile so differently this year. I take mental pictures of everything and try to hold onto those feelings for as long as I can. Being in the moment is hard for me because I am always thinking about "What I need to do next". This year I am trying extra hard to not think ahead, and savor the time I have right now with my family. All my life I heard adults say that kids grow to fast, and they do. But, this year, on Christmas, I am going to stop my mental clock for the day. I am going to take the time to thank God for his sacrifice, be thankful for the friends who make time for me and put up with me, be grateful for my family and the most awesome husband God could have chose for me and most of all be grateful that my best friend and my daughter are here to celebrate this holiday.

Merry Christmas Everyone.
Blessings~Katie

Day-112 Tangled in Love

2010-12-19T10:38:00.000-06:00

Yesterday was such a fun day for Ella. Her Aunt Carrie arranged for a private showing of Tangled at our local theater.

I can't even begin to tell you how much she loves Ella and Josh, but you can probably tell just by looking at the picture of the two of them. Carrie sent out invitations and invited the girls to dress up as princesses. As you can see, that included us older princesses too! She got there early and cleaned every seat to make sure it was safe. She also bought Ella the Rapunzel costume and made goodie bags for everyone to take home. The kids had so much fun! Ella spent the entire day covered in glitter and wearing her dress. It was a very good day.

Now we are off to spend some time together in Wisconsin. Ella and I have packed our "Spa" stuff to do while dad, Josh , and Jes are at the water park. Looking forward to seeing our family too!

Blessings~Katie

Day- 111

2010-12-17T07:07:00.000-06:00

Conversation between Josh and I this morning while snuggling:

Mom: "I love you bubbie."
Josh: "I love you too, your the best mom ever!"
Mom: "I know. Can you please stop growing bubbie?"
Josh: "No, So I can get big and be 8- then Ella will be off treatment."
Mom: "Sniff, Sniff, I love you bubbie."

Day 109 & 110-Wishes

2010-12-15T08:57:00.001-06:00

We are just hanging out and trying to stay warm. Today the weather man said "It will be warming up today, with a high of almost 20!". Gotta love Chicago!
Ella is doing well. Her skin is starting to dry out- but everyone's is in this cold weather. Her next treatment is December 27th, and this will mark the most difficult part of her treatment. It's 2 months of about 8 drugs, bone marrow aspirations, and spinals. Plus there is a 4 day treatment when a nurse will come to the house to give her chemo and they will teach me how to do it. They said we should expect the rest of her hair to fall out by mid January, and she will be back on the steroids. I can't tell you how scared I am. I look at her and just cry spontaneously through the day- because I know what is coming. I am so grateful, that she does not.
I think the hardest part for us is that she doesn't look like our baby on steroids. I know how bad her body must ache, she couldn't even walk last time- I just wish she was through it.

Pop-Pop 1980"s ish

Have you ever wished you could make a deal with God? Maybe we all get 3 wishes to use and that's it? If the wish makes sense to God then it's a go? Well, I use to play this game in my head when I was younger. Whenever something came up, I would think "Do I use one now? Would something more important come up later that I might need it for? Would I regret it if I used it now?" In my late 20's my Grandpa, Pop-Pop, was ill and had to go to the hospital. As I sit here typing this I am staring at this awesome picture that a photography student took of him in the 80's and I am tearing up. In my eyes he was an amazing man, and not because he was rich or he had a glamorous job but, he loved my grandmother. From the time I was 16 and old enough to work, I flew out to Reno every year to visit them. I usually stayed anywhere from 4-7 days. Sometimes I'd go twice a year. I never saw anything but love come out of him. Even in his 70's he would still walk into the kitchen and smack my grandma on the tush and she would turn and look at him and say "FRESH!", then they would kiss. Anyway, When he got sick, I flew out to see him. And, I played my game, but this time I wanted to use one of my wishes. So, I asked God to trade 5 of my years here for 1 more year with him. Now, don't get me wrong, I know you can't really make deals with God but, my Grandpa passed one year later, 3 months before he was going to walk me down the aisle.

I'd like to use wish number 2 now please.

Blessings~Katie

Day 108

2010-12-13T22:43:00.001-06:00

Kids Choir! Morgan, Ella and Josh are in the front row, last 3 on the right,

Ella had a good day today. It is SOOO cold outside- 11degrees. We did some homework and started reading a Beverly Cleary book today. She let me put her hair up in a piggie today. I know she only has a few weeks left with hair. I want to try to prepare her for that, but I don't really know how to. Her "BFF" Morgan made her a wig last week. I thought it was the sun with big golden rays, but it was a wig with long blonde hair. How sweet is that. Her BFF also asked her mom to cut her hair sure short since Ella won't have any soon anyway.

I can't tell you how much I love these kids. I worked for our church in the children's ministry for a while, and have been watching these kids grow for over 4 years. I know so many of them and have had the rare opportunity to see their hearts. Just can't even tell you how much I love these kids. It was awesome to get to spend the past few weeks with them. One of the girls didn't want to stay in the morning, so I made her my "Special Friend" for the day. She was glued to me. A few times, I looked down to realize she was still holding my hand. Anyway- Just loved it.

Tonight, Ella said she was scared to go to sleep. I snuggled with her a few times, and asked her why she was scared- She said she "just was". I asked her again, and she said she didn't want to be alone. On her wall I have hanging in a square patten pictures of her family and friends. We went through and named everyone and I told her they were all in her heart so she was never alone. That worked for about 2 minutes. Ahhh.

Our Prayers go out to our friend Katie tonight who is having surgery in the am.

Blessings~Katie

Day 107

2010-12-12T22:55:00.001-06:00

Ella got to sing in the Children's Choir today. Yea! Can't tell you what a beautiful sound it is to hear 40 children worshiping and smiling! Ahhh. She had a good day playing with her Auntie Carrie and her Pickles.
Steve and I got to go on a loooonnngg date. We went to 10 stores, had dinner together and saw the movie RED. I'll tell ya, I don't know why but watching Bruce Willis kick some poor guys butt, made me LAUGH! Poor Steve, I do the same thing whenever he hurts himself at home. I don't know why, I can't help it!
Good day for everyone.
I'll post pic's of the kids singing tomorrow.

Blessings~Katie

Day 106

2010-12-11T19:09:00.000-06:00

Josh's "Tootie" certificate

Josh lost a tooth last night. "Tootie the Tooth Fairy" came to visit and left a certificate and $1 under his pillow. When Josh woke up this morning, we asked him if he found anything under his pillow, he said yes, but he wanted to wait for Ella to wake up so she could see it too. I know I'm his mom, which means my opinions are as slanted as a politician trying to get elected, but isn't he the best brother ever?

Ella had a hard time falling asleep last night and slept in again this morning. We were invited by a foundation to a kids Christmas Party today and she threw up on the way there. All over her Christmas Dress, her blankie and coat. She was still determined to go so we cleaned her up as best we could- and went anyway. The kids had fun, but for me it was a swift reminder of how fast tings can change. It left me in a funk. We haven't had her get sick in the car in such a long time, we were totally un-prepared for it. No gallon bags, no paper towels, no extra clothes. Ahrg. She and Josh got to play games at Dave and Busters and decorate cookies.

Steve and Ella at Dave and Busters

Despite the fun they had, they were both anxious to leave because we were picking up Jesania today to spend the night. Now they are snuggled on the couch watching Christmas movies, and waiting for Steve to make popcorn.

Jesania and Ella

Looking forward to tomorrow. My friend Sandi and I are running the Choir at church and I can't wait to see 40 smiling singing kids tomorrow- including my 2! Ella is so happy she gets to be there with her friends. They have been practicing every day after school. She LOVES to sing and dance.

Have a good evening.
Blessings~Katie

Days 103, 104, and 105

2010-12-10T19:30:00.000-06:00

Ella's treatments are at Loyola, they hosted a dinner and presentation this week for families who have children with cancer. I was surprised at how few families were there, but the ones that were, you knew they were willing to do anything they thought might help their children through this awful journey. The best thing that came out of that dinner for me was meeting another family with a 6 year old girl that has ALL. They are a few months ahead of us in treatment, and our paths have never crossed in clinic. I read her Caring Bridge (kinda like a blog) today, and now there is another child I'm in love with! These kids are so strong! This song just keeps going through my head:

The words "And I will find my strength in the shadow of your wings." keeps going through my head. I just picture all these little kids standing behind HIM gathering their strength to move through another day- full of faith and love.

Ella's Nurses

The next day Ella had Clinic. Her ANC was so high, they did her blood work 3 times! It was, dare I say-Normal? Her ANC was 6550. The highest it has ever been before this was 1700. Well, I am scared that her ANC is so high. I don't care what the Dr.'s tell me -I'm worried. She fell asleep during Chemo, so she must have been really tired. Today my 6:30 am early riser slept until 8:00 and took a 2 hour nap. Her temp was 98.7, but for her, that is a little high. I know, I know, but I'm just keeping an extra close eye on her! This was the largest chemo dose she has had. She gets a break for Christmas now. They are not starting the next protocol until December 27th. This will be the hardest one she will have, and it lasts 2 months. After Chemo she had her usual trip to Build A Bear, this time with Auntie Carrie. I can't tell you how much she loves these animals. They know her by name now at the store.

Ella playing with her B_A_B's

2 of her favorites

Tonight she and Josh are having a Popcorn and Movie night with there friends. They were all so excited to have a "Long" play date in their jammies. Popcorn is a food group in our family. We have special bowls and flavors for this occasion!

Rachel, Ella, Joshua, and Ryan just hanging out on popcorn night!

I found out this week that someone else I love has cancer. I just cried. I am so tired of this invisible beast hurting the people I love. Please add Jim and his family to your prayers. Jim and Karen are like parents to me and I love them dearly.
Have a great weekend. The kids are singing this Sunday at Church and I am so excited to see them up on stage!
Blessings~Katie

Day 102

2010-12-07T18:51:00.000-06:00

Snuggle Buddies

I kept Josh home today, just to make sure he is healthy. He asked me this morning, "Mom, do I get to be with Ella today?" As you can see, I let them play together today and have a jammie day. I hope and pray that they love each other this much even when they are 80 years old! They had a good day. Right now they are still on the couch by the Christmas tree snuggling.
Tomorrow night, the family is going to a presentation at Loyola about how to make it through Cancer. Let me re-type that....cancer. I have decided to no longer capitalize this word. Capitalizing it supplies it with too much importance. Anyway I won't be able to update until after Ella has clinic on Thursday. We are going to stay at my friends house by the hospital so Ella and I don't have to drive back and fourth late Wednesday night and early Thursday morning. Please pray that her counts are good, and that this last dose didn't send them plummeting down like last time. If they are low, then we might be deferred and have to go back again this week or early next week. I have decided not to go to our local hospital to have blood drawn unless the weather is really bad. I just don't want her to be poked more than she needs to be.

Blessings~Katie

Day 101

2010-12-06T21:50:00.000-06:00

Ella and Josh both have fevers today. Ella has been hoovering in the 99's all day, but Josh woke up at 101.4 and stayed around that for the day. So, I kept them in separate rooms today in attempt to get them both healthy. When we told Josh he was cold because he was sick, he said "Good thing I am sick". Steve asked him why, and he said it was better that he was sick instead of Ella.

Yesterday, we took Ella to church. Steve and I were trying to figure out how to go so that 1 of us could be home with Ella. I am helping with the Children's Choir at church this year, and I have been having Ella practice with Josh. She asked if she could go and sing with her friends. So, we took her and let her sit in the balcony with us. Church is family to us, and I guess I was forgetting it is for her too. I have mentioned before that I wish I could be one of those "Worship with your hands in the air" type of people. On Sunday, there was a worship song that said to raise your hands in worship. There sat our 4 year old- with her hands in the air, singing the words she picked up- to a song she didn't really know. Showing everyone how to Praise the Lord. Awesome.

Today we played with the Build a Bears and she asked to put on make-up. She snuggled all the bears around our cat and we had a Birthday Party complete with sign for her kitty named Meow Meow. She had a good day.

Day 100

2010-12-05T18:13:00.000-06:00

100 days of Cancer. Nothing more to say.

Day 99- Perspective

2010-12-04T21:30:00.000-06:00

It did stick! I made a mental note as I fell asleep to listen for when the kids woke up this morning so I could hear their excitement over the snow. I know some people hate the snow, and don't get me wrong, after the "White Stuff" turns grey from all the cars driving through it and we have been trapped in the house for a month because it is so cold outside- it's not my favorite thing anymore either. But, a child's perspective on snow is so completely different than ours. They see it as a chance to play and build things. Josh commented all day that he really liked wearing all of his "gear", which surprised me because I can not get him to put on a hat and gloves for school to save my life!
Today was a big play day. We live on a bit of a slope so Steve and the kids spent a good part of the afternoon sledding in our yard while I took pictures and made hot coco. Ella got to go to a friends birthday party today and she was excited just to play and get a "Make Over". I might be able to get use to all this "Normalcy".

Today Josh and I went into the dentist to have our teeth cleaned. He went first and was bummed that he didn't get to sit in the waiting room and play with his DSi. Then the tech started asking about the DSi, and why he got it. Then she kinda kept asking about why he got it. Was it his birthday or early Christmas gift? So, I told her Josh got it for being a really good big brother to his sister who is going through chemo. I felt so bad after I said it because she said she was going to cry. Then I apologized for upsetting her. She said she was teary because she had a 4 yr. old special needs child. We were at the dentist for almost 3 hours this morning. Her son was born with only 1/3 of his brain. She told me all about him and what wonderful strides he has made, what a fighter he is. As I was sitting there, she commented to me that she hears a story like Ella's and feels like her son doesn't have it that bad. Funny, I was thinking the same thing after I heard her story. I guess it is just a matter of perspective.

Blessings~Katie

Day 98

2010-12-03T21:29:00.000-06:00

Make your own pizza night.

Ella had a good day today. She and Josh were able to have play dates tonight and we had a make your own pizza night! Ella had really good energy all day today and played really hard tonight. She was ready to fall asleep, which was nice for me. I only had to tuck her in once!
If she is still feeling well tomorrow, she gets to go to a small birthday party tomorrow- and she is very excited. I'm just glad she has something to look forward to.

It's suppose to snow this weekend, and I hope it sticks. Thank you all for your prayers regarding Ella's fever. She was normal all day today.

Her next clinic day is Thursday. Have a good weekend everyone.

Blessings~Katie

Day 97

2010-12-02T21:08:00.000-06:00

Ella- May 2009 Her 3rd Birthday

We were on fever watch today for Ella. Last night she had a late night temp of 100.3. It wavered all morning, and around 2 was down to 99.3. Tonight 99. So thank you all for praying for Ella. Fevers are so scary for us. We have no idea where hew counts are after this last round of chemo or how the increased dosage will effect her body. I'm just so happy that it is going away. I knew she was feeling better when she asked for pizza and popcorn with all the flavorings for dinner.

I was listening to the radio in the car this weekend, happily singing and dancing to some song on the radio. When the song was over this commercial came on that just kept saying "Your child has Leukemia". They said it about 3 or 4 times before the hospital made their point. I couldn't tell you which hospital or group it was. I was too busy telling them off. I was so angry at them for ruining my 5 minutes of normal time. I know it is for a good cause, but I am living it everyday, and when I take 5 minutes to escape it and go grocery shopping with my headphones on- I don't want to hear about it. But, that made me think. I hear about so many other deadly diseases so often, but not about childhood cancers. Maybe it is because it is too sad. Maybe we can't think about something that painful so often?

I was in the car driving home from the store when Steve called me with the Doctors news. My phone doesn't get coverage in the back of Costco, so I missed the call and the Dr. called Steve instead of me. I think that was God's way of protecting me. I don't think I could have handled that phone call in the store. I don't think I could have heard the news from anyone other than Steve. I think about that phone call often. I think about it every time I drive down Randall towards Costco. I pulled over to talk to Steve. I just remember saying "No, No, NO!" Not my baby, not my child. But, yes. My child has Leukemia, and I don't need the radio to remind me!

Nigh Night.
Blessings~Katie

Day 96

2010-12-01T20:41:00.000-06:00

Ella had a good day. We played candy land and puzzles this morning. Today was a jammie day, and a good day for it because it is cold and windy out there today! She got crankie really fast tonight. I thought she might be tired but when I snuggled with her she felt warm. She is almost at 100, so we are on fever watch tonight. I think she will be find, but we still have to be careful.
We have been reading Charlotte's Web for the past few weeks at bedtime. She likes to ask lots of questions about Charlotte. Tonight she asked me if I thought the spider she saw this summer on our front porch was still there or went someplace warmer like her Grandma and Grandpa. So cute! She is also very excited that she gets to start eating the chocolate in her advent calendar, and she is counting down the days for everything lately- when she will see Morgan, when is Rachel coming home, when is Pickles coming over. Everything is counted in nigh nights!

Nigh Night Everyone!
Blessings~Katie

Day 95

2010-11-30T22:43:00.000-06:00

Our French bread.....

Ella maintains her Rock Star status for today! She spent the morning playing with Pickles (Sara) and helped me make bread this afternoon. She likes punching the bread down, and eating it! She took a nap this afternoon, but then she had a hard time falling asleep tonight. I am still amazed at how well she is taking the chemo, and just in awe of how strong she is. We have been making a lot of bread lately. I just love how the house smells when it is done!
I saw someone that I had not seen in a year today. I still haven't come up with a good way to answer the "So, what's new?" question. "Oh not much, my daughter has Cancer." That just doesn't seem like a good way to start a conversation! Oh well, I still have a few years to figure it out.
Ella has Clinic again next week. Thank you all for your continued prayers.
Blessings~Katie

Day 94- Clinic

2010-11-29T21:24:00.000-06:00

It was a long day at Clinic today, and Ella was a STAR! We arrived at 8:50am, and it took until almost noon to get her blood work back and then another hour to get her meds up from the pharmacy.There was only one nurse scheduled, so it was crazy with them juggling everyone. Ella couldn't eat or drink today because she had a spinal, so she didn't eat until almost 2pm today. So for how frustrating Clinic was today, Ella was awesome!

Ella and Dr. Manera

Today was her breakthrough day. Today, she smiled at her doctor, she didn't struggle when they accessed her port, she talked to everyone. She actually seemed a little relaxed. This time we didn't get juggled back and forth between rooms, and I think that helped. We could actually begin an activity and finish it to keep her distracted. She even sat on the procedure table and laid back by herself. She was a shining example of strength today. She even realized it was taking a while and asked "When am I getting the red dot on my finger?" There is an oxygen sensor that goes on her finger during the spinal, and she knew it was coming. She didn't even squeak when they took out her port access. Total Rock Star today.

She had 3 chemos today. One in her spine, and 2 by IV. They upped her dosage, which we didn't think they were going to do since she bottomed out last time they did that, but they really want to push their little bodies to the limit. The Doctor said the closer to the protocol they stick- the higher success rate she has. I know this, but I don't have to like it. During her spinal today, I lost it. It is still overwhelming to me to see her like that on the table and wonder if she really will be okay. She had a little bit of a reaction to one of the drugs and it just made her face red and blotchy. Also her eyes became all red, and to me- it looked like they were teary. The red didn't bother me- it was the tears that grabbed my heart and pulled it down to my feet. To think that she is in any pain- physical or emotional just brings me to my knees. Again, I am sure she didn't feel anything, but I don't have to like it.

Ella, her sticker jewelry, and me.

There is a toy chest in the Clinic that the kids get to pick out a toy from when they come in to take home. I was talking to the nurse today and she was telling me that most of the charities that were donating have stopped. To her knowledge, there is only one left. At first I hated the idea of giving Ella something material every time she goes in, but knowing what pain and stress their little bodies go through while they are at clinic- if looking forward to a gift makes it bearable- then gift it is. So, I know everyone is overwhelmed this season with requests to give, but maybe your kids will get 2 of something- or a toy without a gift receipt. If you do, let me know and I will take it in to add to the toy chest. After Christmas if fine, these kids have a long journey.

So, this week we pray that her numbers don't tank with the added chemo and that her body will continue to be able to handle this.
Blessings~Katie

Days 88, 89, 90, 91, 92, and 93

2010-11-28T23:07:00.001-06:00

Ella has had a really good week. She has played hard, laughed and was just a kid. A few times she and Josh just played upstairs for hours. One of their favorite pass times is taking every cushion off the 2 couches in the living room to create some kind of fort or jumping pile. She even had a sleep over at her friends house. Her brother is so jealous that none of his "guy" friends are ready to do sleepovers yet.

We decorated the rest of the house for Christmas. We have 4 trees up now, and I am sure Comm Ed will love us this year. I wish I had a camera when Ella saw the lights outside the house last night. Her eyes got so wide and she said "How did my Daddy get the lights up on the trees!" Josh, spent the night last night in front of the Christmas Tree in the living room. I just love this time of year for them! All the innocence and wonder in their eyes. Josh said he wants a computer, I told him it was too expensive- he said "Just ask Santa to make one!" He looked at me so seriously. it's a good thing he can't read me that well yet, otherwise he totally would have caught on when I told him Santa didn't make electronics. Now I have to remember that I said that.
Dang, smart kid!

Josh and Ella

In front of the tree...

Tomorrow is clinic, and Ella is for a spinal tap to check for cancer in her Central Nervous System and to get chemo injected into her spine. She is not allowed to eat in the am, which is always hard- but she is tough. She usually has a list of demands for what items she would like to eat as soon as she is done. I can't sleep, because I know what she has to go through tomorrow, and I hate it.
Please pray that she will sleep well tonight and her counts are good tomorrow.
Blessings~Katie

Josh trying to give Ella bunny ears in the pic!

Happy Thanksgiving

2010-11-25T14:02:00.000-06:00

As we do every year, we have so much to be thankful for. This year I am just looking at it all differently.

Happy Thanksgiving to everyone. May you feel your blessings this Thanksgiving!
~Katie, Steve, Josh and Ella Grace Van Gheem.

Day 86 & 87

2010-11-22T11:28:00.001-06:00

Karate Party Goers!

Joshua had his Birthday Party on Sunday. Yes, It was a Karate fun filled day! Ella was well enough to participate and within the first 5 minutes she was walking around holding the hands of her 2 closest girlfriends. She was in a great mood, and you could tell she was having so much fun! Josh was wearing his new uniform with his name on it and really enjoyed being able to share his new found passion for Karate with his friends. It was really great just to watch them all running around and having fun!


Ella in a Karate Uniform :-)

Ella does not have treatment this week. She isn't sleeping well still (which means I'm not either), but that's the worst of it right now- so we are so very lucky! We plan on enjoying this week together and just hang out with friends.

We hope everyone has a blessed Thanksgiving. I know I have so much to be Thankful for! God Is Good.

Blessings to Everyone. I'll post if something is going on.
~Katie

Josh practicing a kick before the Party started!