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
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
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
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
I HATE the Green Eyed Monster. For me, my eyes are never greener than when I am in a room full of other women. It's one of the only times I care what I am going to look like, how much I weigh, or if I am having a good hair day. The thing is, I am not looking at the other women and judging them. I am usually just comparing their greatness to my not-so-greatness. Why do we compare ourselves to others? Why are we not happy with being who we are? Well, today I got to see my monster at its best.
Today, I ran into someone from high school. She completely caught me off guard. I think the last time I saw her was over 20 yrs. ago. A few months ago we found each other on facebook, befriended each other and left it at that. Today I took a spin class, only my second since Ella has gotten sick, so I am still getting back into my groove (yep, Katie lost her groove). This old friend was on a bike behind me and recognized me. She said hi, but I was so taken off guard that I wasn't sure what to say. I though about why I didn't say much and as soon as the class was over apologized to her for being "caught off guard". Then as we chatted and caught up I realized I had this "Need" to let her know that I had done well in my life. I asked her about her career, but then felt this urge to make sure she knew that I had a career too. Let's just say, I'm not very proud about the rest of this conversation. I'm pretty sure I insulted her at one point without meaning to. But, as always, after reflection I realized my Monster probably had more control over the conversation than I did. I'm sure she probably didn't give me a second thought today, but I couldn't help but think about our conversation and why I felt like a 16 year old girl again.
My friend Koni and I in High School. Gotta love a good Perm!
MOST of the rest of my adult life- I have acted like an adult and left high school pretty far behind me. But, for some reason when I see or hear from someone that I went to high school with that I haven't kept in touch with I usually end up feeling like my awkward teenage self. My 20yr. reunion was this year and I didn't go because I was at RAGBRAI, but honestly I was kinda relieved that I couldn't make it. I think I knew I would feel like I needed to prove something to everyone there, or my Monster would, and I didn't want to do that. Does anyone really care anyway? Really, I hope that everyone is happy and healthy in their life. I don't really care so much about what they do, but if they are happy doing it. And she looked pretty dang happy to me(and she looked great).
So, Monster be damned, I will continue to fight him when he pops up. Sometimes I will fail, sometime I will succeed. But really, I just need to be happy that I am happy with my life, and be happy with the way God made me.
Steve did this quick video of Ella. Thought you might enjoy it
Blessings~Katie
P.S. Ella is doing well today and looking forward to Josh's party tomorrow!
July 2010 at the Butterfly Exhibit celebrating Grandma's Birthday.
Unconditional Love. It isn't something that we get to see often, but I got to see it in spades this morning around 5:30am. I think it is easier to see in animals and children then in adults, but today I got to see it in a Grandma.
Steve's parents left for warmer weather this morning. They were here for the past 2 days to spend some time with us and go to clinic with Ella before leaving for the winter. Ella had a rough night last night, so I was curled up in her twin bed with her at 5:30 this morning when Grandma came in to say goodbye. Ella wasn't sleeping well so she got right up. Grandma was crying, and they were smiling at each other. Then Ella got up for her hug and I watched them just hold each other and whisper words of love to each other. That was it. Unconditional Love. Nothing said besides how much they loved each other, but you could just tell by the way they looked and smiled. It was like they both just knew. Where they are, doesn't matter. Ella still knows how much she is loved. Ella stayed up and I blurry-eyed, stumbled back into my room and prayed for a few more minutes of sleep. I know the rest of the morning was filled with similar exchanges between Grandma, Grandpa, Josh and Ella. And, I am sure there were many tears that followed as they pulled out of the driveway. But, I also know without a doubt, that Ella and Josh know how much their Grandma and Grandpa love them.
Blessings~Katie
