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Tuesday, November 30, 2010

Day 95

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.

Monday, November 29, 2010

Day 94- Clinic

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.

Sunday, November 28, 2010

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

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.
Josh trying to give Ella bunny ears in the pic!

Thursday, November 25, 2010

Happy Thanksgiving

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.

Monday, November 22, 2010

Day 86 & 87

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.
Josh practicing a kick before the Party started!

Saturday, November 20, 2010

Day 85- Monsters

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

P.S. Ella is doing well today and looking forward to Josh's party tomorrow!

Friday, November 19, 2010

Day 84- Unconditional Love

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.

Thursday, November 18, 2010

Day 83-Clinic

Ella had clinic today. Her ANC was way up so she was able to get both Chemo's today. They decided to lower the dosage of the one her body doesn't handle well, and leave her at that dosage for the remainder of this phase. I'm so torn because I want to make sure she never has to go through this again, and at the same time I don't want her to have to go through it now.
It was so hard for me not to go with her today. I know I had nothing to worry about, but I like to be in control, and when I'm not there i feel like I have even less control of this situation- if that is even possible! Ella did really well according to her clinic crew (Daddy, Grandpa, and Grandma). We always have people with us at clinic. No special reason- just for support, and that's kinda cool.
Ella after Clinic today. You can see the band-aid on her port.
Right now she is wearing a Strawberry Shortcake costume and she is curled up on the couch with all her blankies and watching a Barbie movie with Grandma. Right now, to her, her world is perfect.

I am glad Josh will have the week off from school next week. I think he needs some time to decompress. He seemed like he had fun when I brought lunch in today, but he asked me for 2 hugs and I thought he was going to cry when I left. It completely broke my heart. I almost brought him home with me, but I know that would not solve whatever the problem was. I just want him to be happy at school. Last year I can not remember a day when I picked him up that he wasn't completely happy. Now, most days he is sad, silent, or both. It's frustrating. I wish I could be a fly on the wall in his class some days. Maybe I can? I'll put a listening device in his backpack, and a microphone in the top of his pen. That way I can be with him every minute and know what was going on! Perfect! Okay...... I'll back off of the crazy overprotective mommy thoughts and just try talking to him again.


Wednesday, November 17, 2010

Day 82

Ella spent most of the day today anxiously awaiting her Grandparents arrival. She asked me to call them 2 times before 10am. Ella has clinic tomorrow with Daddy, Grandma, and Grandpa. Hopefully her ANC comes back good and she will have both Chemo's tomorrow. I am so torn because part of me wants her counts to be low so she doesn't have to get one of the drugs, but I know that defeats the purpose. AHRG!
Tomorrow I get to go to Joshua's school and take pizza in to celebrate his birthday. He is pretty excited. I know this school year has been hard. It's a new school with all new kids and he is a more reserved boy. I know he misses his old school, and so do I. But, he is adjusting and I'm just trying to do what I can to help that.

Pic of me pregnant with Ella with 2 wks to go and Josh touching my swollen belly.
Please pray that Ella will have an okay day tomorrow. Before she went to sleep she told me "I'm not going to be happy tomorrow". She usually says that the day before clinic.


Tuesday, November 16, 2010

Day 81- Ella's Half Birthday

For some reason about a week ago, Ella asked me when she would be 4 and a half. Then, she started asking everyday how many more "nigh nights" were left before her half birthday. She was so excited this morning when she woke up that TODAY was her half birthday. We made cupcakes and bug shaped brownies to celebrate the occasion.
As an adult way over the big 3 O you couldn't catch me celebrating a half birthday of my own. But for a kid birthdays, even half birthdays, are such a landmark. They show how much they have grown both physically and emotionally. When she got excited about a half birthday, I kinda did too. I also got grateful. Grateful that she is celebrating her half birthday. Grateful that she is still here. Grateful that for now, she is happy, has good energy, and is smiling everyday. I also realize how much she has changed and grown over the past 81 days. How much her little body has endured, and what an example of strength she is not just to us, but to people we do not know. Friends of friends who have given gifts, cards, and even their own blood because our child is strong enough to endure this journey.

To those of you I know, and even those I do not- thank you for all your encouraging words, cards, gifts, and blood! Thank you for following Ella on this journey and offering you prayers.

Joshua will be celebrating his 7th Birthday this weekend, and you will never guess what kind of party he is having........a Karate Party. He seemed mad today that Ella was having a half birthday. When I asked him he said he was feeling left out. I didn't, and still don't know how to reconcile this with him. I didn't know who to make him understand that celebrating Ella a little today, did not take away from his party at school, or at the Karate Class. We are trying so hard to make sure that Josh isn't left behind in this process, it just left me feeling like I am doing this wrong. But how do you do Family Cancer Survival right? There is no handbook on getting your family through this without any damage. Lord knows I would have been at Barnes and Noble to buy a few copies by Day 2. All I can do pray, do my best and pray a little more.
Ella and Steve at Ella's 4th Birthday

Monday, November 15, 2010

Day 79 and 80

With just the one dose of Chemo, Ella is holding up really well. We had school today and lots of Arts/Crafts time.
She asked me today why she can't have any play dates and why we stayed home all day. I wish she could just have a normal kid childhood. This really makes me hurt for her. I do my best and when she is well enough I let her play as much as possible. But on days like today, when she has more energy than I do and just wants to play- it is hard for her to understand that she is sick. There is a good chance she will not be able to go to Joshua's Birthday party this weekend- which makes me so sad.
Her next clinic is Thursday with daddy. If her counts are up, she will get 2 chemos and they will increase the dosage of one.
Thanks for keeping up with us, and parying for Ella.

Saturday, November 13, 2010

Day-78 Karate!

Just bragging a little. Josh got 2nd place in the Karate Tournament today!

Friday, November 12, 2010

Day -77

Hi. Ella had clinic today. She is still neutropenic and her counts were even lower today then Monday, so they only gave her one of the 2 chemo's today. They said her body just might not be metabolizing the 1 drug well. They decided not to push back her schedule since she got at least 1 of the drugs, so she goes back next week.
She is in a great mood right now. We are keeping her on the anti nausea meds just in case. She hasn't been sleeping through the night. About 1/2 way through she usually climbs into bed with us and kicks me for an hour or so, but its okay. She asked if she could put her little Christmas Tree up in her room tonight. She is excited for Christmas! Josh has his first Karate Tournament tomorrow and he is jumping out of his skin with excitement! He is such a good brother. He hugs Ella (or lets Ella hug him) everyday before he leaves for school. I know I am bias, but he has such a good heart. I am so proud of him, and proud to be his mom.
Have a good weekend all.
Blessings~ Katie

Thursday, November 11, 2010

Day 76

Ella and I had a fun day today. We went for a scavenger hunt in the forst preserve and made a wreath with the things we found. Hot glue rocks!
Ella has clinic tomorrow. Please pray that her counts are good. I'll update more tomorrow.


Day 75 Strength

Ella is doing great. We are just hanging out at home and patiently waiting for her counts to be better so she can have treatment on Friday. If her counts are not good, they will just give her 1 of the chemos instead of 2. yesterday Ella and I made 4 loaves of bread. She loves when it is time to pound them down. She kneaded her own loaf and loved playing in the flour. I think everyone is getting fresh bread this year for Christmas!

I lost it yesterday. Some carpet salesperson called and tried telling me a "friend" referred me for 2 free rooms to be cleaned. She would not let me get a word in, you know how good they are at that. After saying in my polite voice "no thank you, I'm not interested" I finally yelled "excuse me, Excuse me, EXCUSE ME- My child has cancer so NO you can't come over!" Then I hung up the phone and let it all out. Jen took me out for a drink and the most mindless (and gross) movie ever- Jackass. Just what I needed, thanks Jen.

Strength is a funny thing. When there is a crisis, I am strong without thinking about it. You just go through the motions because you know what needs to be done. When I reflect on the major times in my adult life when I needed to be strong, that seems to be the case. It is not until the event is over, and I am by myself that the scope of the situation seems to creep in and take over my emotions.Yesterday was one of those days for me.

Otherwise you can bet there is no way anyone would have been able to take me to see Jackass!


Tuesday, November 9, 2010

Day 74

Ella had lunch in our "dead" mall today with grandma and grandpa while I ran errands that I knew I wouldn't be able to run once they are gone. I hate that she is neutropenic. She could only got out if everything was cleaned, the mall was dead, they sat in a back corner, and Purell was a part of her meal! She had good energy today and was mad that grandma and grandpa left. They are snowbirds so its almost time to fly off to the south, and she knows it. She had a fun day playing with her Build a Bears and her DS.
I think I was still mad for most of the day about yesterday's waiting room experience. I know...deep breath...deep breath. Love the people, not the process.
Grandpa took these shots today!

Monday, November 8, 2010

Day 73-Clinic Vent

Ella had clinic today. I lost another part of my patience today. It took 3 hours to find out today that her counts were too low and we were sent home till Friday. I totally understand the fact that her counts were low, but I don't understand why: only 1 oncology nurse was on duty when we got there, it took 2.5hrs to get her blood tests back, we sat in a waiting area for an hour and a half that was packed with patients and their parents.
Maybe I'm just too new to this, but it seems like a less than efficient system to call us into the clinic area to have her weight, height , and blood pressure taken, go into the clinic to be accessed, go back out to the waiting area because they are so busy that they are out of rooms, go back in to be seen by the Dr., go back out to the waiting area to wait for her test results, then go back in again when they get the results- or have a room available for you.  Today just didn't go smoothly. She complained of pain as soon as her port was accessed- and said if continued to hurt afterwards. She has never complained before- so I stood up for her and said it has to be "something" because she hasn't complained about pain after like this before. Nurse 1 agreed, and nurse 2 said she must just be stressed and letting off steam. Nurse 2 was called in because they were so busy.
Then we were sent back out to the waiting area that was completely packed. Jan and I sat on top of this little bookcase/bench because there were no seats. The oncology area shares a waiting area with the regular non cancer peds area and their waiting area was filled so the regular patients and their kids were sitting in the peds area. I watched this mom sit there and cough into the air and it was hard for me to not smack her! There is one little sign that says that this area is for oncology, but I don't think half the parents see it- and it's in English which isn't every patients first language. Also, the 1 bathroom in the area is on the oncology side- so every kid, sick or healthy, and every parent, sick or healthy, has to go through the area to go to the bathroom. They also have the entrance for another peds area at the end of the waiting area that patience leave and enter through, so they are also walking through the oncology area. This seems so counter productive to me! To me a separate area to keep them healthy means a separate area, not one that is used by everyone.

After we sat there for a while, one of the nurses from the "Regular" area that took Ella's vitals when we got there said that she just went to pick up Ella's meds so she would be called back shortly. Half an hour went by and Ella was still complaining of pain by her port, so I went back and told the regular nurse to tell the oncology nurse and they called us back. This is when they told us her counts were too low for treatment. Which means that they never got her meds, because they are not ordered from the pharmacy until the blood work comes back. AHRG!!! The doctor came in to tell us her counts were low and I asked him how safe it was for her to be sitting out there all this time, with every kids of patient, with her whites so low? Then I suggested that they get another sign so everyone can read it.  He also gave me a script to take Ella to our local hospital during this phase to have her blood work done the day before so we don't have to drive out there and sit while waiting for her test results. I can't tell you how stressful it is for Ella to sit there and wait for treatment. She knows its coming and that we are just...waiting. She heard the nurses voice that usually accesses her port today and she started crying . She was sitting on my lap and she grabbed my arm so she could wrap it around her more tightly. It just seems like there should be a better way. there isn't anything to keep her distracted during the waiting process. We bought her a Nintendo DS, but that only worked for 30 minutes.
So now, we go back on Friday to check her counts. It means we keep her away from germie places this week, and try to keep her safe.
Thanks for letting me vent. Please feel free to share your hospitals procedure with me if you are at a different one. I like the people, just not the process.

Happy birthday to my awesome hubby. I love you with all my heart.

Sunday, November 7, 2010

Day 71 &72

Ella is fine. It's just that I find myself alone in the house, which is such a rarity, that I realize I'm sitting here thinking. Sometimes maybe it is easier to just keep moving forward and not stop and think.

The kids are playing with one of my closest friends, who just completed her chemo this summer. They were so excited to spend the night they were packing at 6:45am yesterday and had bags of luggage for their overnight trip, which she lovingly packed in her trunk and her front seat. Smiles on all 3 of them as they pulled away yesterday.

I found out this week that my biological father has cancer and is in treatment right now. This is a man that I have only met once. I stopped being sad for myself that I didn't know him years ago after I finally met him. It was weird, because when I met him, I stopped being sad for the things that I thought I missed, and became sad for him and the things that he missed- and is missing out on now. I am not going to claim to know him, but from our brief meeting in 2000, it seemed to me that fear was the thing keeping him from knowing me, and now my family. And we are a damn cool family!

So today, I am praying for Dave. I pray that he believes in our Savior, that he has peace in his life, that his body will be healed, and maybe his heart.


Friday, November 5, 2010

Day 70

Just another ordinary day!
As I typed the number 70, I had to say "Wow 70 days". In some respects it seems like a big number and others so small. As I read the trials of other parents with ALL children, I am reminded on a daily basis that we are the lucky ones. She is so happy and has so much energy. Right now she is singing and dancing behind me and I am wondering how I am going to get this kid to fall asleep in the next 15 minutes so I can get some stuff done! She has been singing everything lately. Making up words for every activity she is doing. Right now I told her I would snuggle in a minute so she is singing about stickers and snuggling.

Today Ella and I used a fabric bone that had blood cells in it and a DR. kit so we could explain to her Build-A-Bears how her blood was sick. She really got into it and preformed the 2nd exam on her kitty all by herself. We went over ever step of what happens when she is in the clinic- and then with the bone explained why. She even accessed their "magic medicine buttons" and put a band aid on them when she was done. It made me feel better to know that she has a better understanding of why we are going through all of this.

Have a good weekend everyone. It's Steve's birthday so Josh and Ella are going to hang out with Aunt Carrie and Steve and I get to go on a date. I'll post again after the weekend unless something comes up.


Thursday, November 4, 2010

Day 69

Ella and Pickles (Sara)
Nothing new to report. Ella had a fun day of playing with her Pickles all morning. Sara comes a few times a week to play with Ella while I work and clean. She is my sanity saver and Ella's fun saver! I try to play, but in the end, I'm still mom. So Sara saves the day! Here they are with all of Ella's barrettes in their hair and googly eyes on their faces. Sara has so much love in her heart for kids, and I am so grateful God gave her that gift.
Ella with 5 eyes

Have a good one.

Wednesday, November 3, 2010

Day 68- I'm okay until someone asks me if I'm okay

Beautiful Rainbow from this morning.
Ella is at rock star status. She is moody, but she is a girl, otherwise she is doing great. We got to go to lunch with a dear friend today and we played and worked on schoolwork together- yep, just another boring day. We are so lucky!

Everyone asks if I'm okay. As long as they only ask once, I'm fine. But, if they ask twice and say "No, are you OKAY?" then, I'm not okay anymore. For a split second I actually thing about what our family is going through and I have to choke back the tears. I guess I'm as okay as I am going to be. I have started pretending a little that nothing is wrong with Ella. That she is just a normal 4 year old girl, who happens to have Cancer. This pretending in my head helps me make it through the day. I'm fine until something slaps me in the face- like the 2 inch scar across her chest where her port was inserted. I kiss it every time I get her dressed for the day. Today, it was the waitress at Applebees. She informed us as we were leaving that they are supporting the Make A Wish Foundation and she told us about a little girl with ALL that wants to go to Disney. I think we both welled up with tears a little. Today this was my little slap of reality.

I believe there is something worth its wait in gold at the end of that Rainbow, and its a beautiful promise.


Tuesday, November 2, 2010

Day 67

Nothing to report, just a normal boring day here at the Van Gheem's today......YEA!!!

I got in trouble with my own Dr. for not taking care of myself yesterday- no surprises there. He said I needed to drink less caffeine and avoid stress to lower my blood pressure.....ha! He wants me to try on my own for a year before he gives me anything for it. He may as well give me the pills now!

Have a good night. I pray for many more boring posts!

Monday, November 1, 2010

Day 66

Josh- Ninja, Ella-Princess, Steve and Katie- Black Eyed Peas

Ella has had a ton of energy.  She makes me tired just trying to keep up with her. She walked about a mile on Halloween to go Trick or Treating, then spent 3 hours playing with her friends. She is doing so well. We do not need to go back to clinic till next Monday. She goes every 10 days for this round with increasing doses.

Today after Ella put a headband in her hair she went over to her mirror to look at it. She said, "Mommy, why is my hair missing here?".  She looks every day and hasn't noticed until now. So I just told her it was wet, and when it dried it would spread out. Then told her she looked absolutely beautiful. She smiled and went on with her day. If she was an adult she would have questioned it and been consumed with it for the day- Kids are so trusting!


P.S. Her hair wasn't wet.