Sooo much fun!

The month of June is quickly coming to an end. It is certainly a month of many memories. We have been running non-stop all month but we are so happy that we can have so much fun these days and we are not complaining! I wanted to share some highlights and pictures from the last few weeks.

I just HAD to take a picture of Mikayla with her LAST dose of oral chemo. What an amazing night!
Oncology Camp

I never fully updated on Mikayla's week at camp. She had an AMAZING year this year. She has grown up so much this year and you could tell. She made so many great friends and was much more social this year. In fact, when we came to pick her up she was happy to see us but when it was time to leave she started crying (WHAT?!?) She didn't want to leave her friends. I was so happy that she enjoyed camp that much but I wanted her home! LOL On the way home she was counting how many years of camp she has left. I have a feeling those girls will be lifetime long friends after their 13 years together!

Flashes of Hope

We also did the Flashes of Hope photo shoots at camp on Thursday. It was a perfect day, no rain but a little hot. We will take it. We were able to photograph 133 kids and all in one day! I can't wait to see the photos come in. The kids LOVED having their photos taken and it was such a great time interacting with the kids at camp.

The Spoonies
We had a the Spoonies from California come and stay with us for three days (wish it could have been longer!). Their son Bailey (cp: SuperBay) had cancer too and finished his chemo just a month ago. They are on a cross country trip to see many things. We were so glad they stopped to stay with us. Their kids were GREAT and my kids fell in love with them quickly. It is amazing to us how we can make friends across the country and feel like we are family. Cancer certainly has brought so many GREAT people into our lives and we are forever thankful for that!

The EARS!!!

Mikayla has been looking forward to the day her port came out forever! She knew that was the day she could get her ears pierced and she was not going to waste any time. She got dressed in her Easter dress, flat ironed her hair and put on a little glitter so she was beautiful for the occasion. She picked out some sparkly stars for her ears and she is so proud to show EVERYONE her new jewels. I swear sometimes I look at her and think we have a whole new little girl. She got glasses, earrings and a port removed all in one month...who is this little girl?!?!

Adventureland with Dance Marathon!

Saturday we headed to Des Moines to have some fun at Adventureland. It was a beautiful day with lots of fun. We got to see so many of our friends and had a great time as a family. My sister (Amy) and her family came with us and everyone had a great time. We arrived at Adventureland shortly after opening and we left just before closing, so it was a fun filled day! Mikayla did scare us a little. She rode the Tornado (her favorite last year) but I think it was a little too much for her this year. She sat out and was a little pale afterwards. She also had a bloody nose on Saturday (she has never had one before!) and the worry started to set in. But she perked up and was leading the pack for more fun in the evening! It was a quick reminder to me that the fear will never leave. And I am VERY anxious to see her counts when she has her next appointment on July 7th.

We also went to Rockwell Collins to watch Brent receive his Good Citizenship Award. They are supposed to be sharing pictures with us and I will post those when we get them. You can see the press release regarding his award at http://http://www.rockwellcollins.com/news/page11770.html I would like to add to the article that Heart Connection was a HUGE part in the success of Flashes of Hope in Iowa and somehow that wasn't mentioned in the article but there is another article coming out that will mention that. It was a great day to see Brent get this award and we are so very proud of him!

We are hoping July will be a little slower for us but we are still planning lots of family time and DON'T FORGET our BIG CELEBRATION on July 11th. We hope to see everyone there.

Christie

Congratulations Brent!

A couple weeks ago I posted that we had some other exciting things that were going on during the month of June. I can finally share what is going on.

Brent was nominated for the Citizenship of the Year award at Rockwell Collins, where he works. We were notified about a month ago that he was the winner of this award. I am so very proud of my husband and the work he does!

The winner of this award gets $500 donated to the charity of their choice, a presentation celebration with the CEO of Rockwell and an article in the magazine put out by the company. It was such an honor to just be nominated, we were shocked to find that he was the winner. Rockwell employees around 20,000 people nationwide, so we thought surely there was someone more deserving.

When we read the recommendations it brought me to tears and made Brent speachless. The nomination was based mainly his work with Flashes of Hope but also included work with Heart Connection and Dance Marathon as we built those relationships through Flashes.

The nomination also mentioned his work at our church and GPL Foundation. Many of you may not know that we were not introduced to the childhood cancer world through Mikayla. Brent was a founding board member for the GPL Foundation. It was named for Grady Paul Larson, a little boy who died from a brain tumor. The organization held an annual softball tournament to raise money to support a child's Wish, with proceeds going to Make-A-Wish. Each year our family would meet and pray for a new child that was facing this battle. I will say that made it hard to tell Tyler Mikayla's diagnosis, because he knew what cancer was and unfortunatley several of the kids that were sponsored passed away, so that is what he knew of cancer and it was the first thing he asked when we told him what Mikayla had.

I wanted to share a few comments from the recommendation...

"Brent has overwhelmingly surpassed every expectation we have for our volunteer chapter directors. In 2008, he provided services to nearly 250 families, far exceeding our target of providing free portrait photography to 50 families. He has held numerous fundraisers – each more creative than the one before. He has created a presence and name recognition for Flashes of Hope in the state of Iowa.
On a larger scale, the work Brent has done to establish a camp chapter program in now a nationwide model for Flashes of Hope. This year Flashes of Hope is establishing camp chapters in 8 other states and expects to be able to provide services to over 1400 additional families through this model." Kristine DiFiore, Flashes of Hope

"Brent took an active role with Flashes of Hope bringing it to Iowa and starting the Iowa Chapter. Brent made it possible for photographers to come out and photograph our Oncology patients at camp last summer. Last summer was the first year for this program to kick off. Brent did a great job getting everything organized. Due to weather and the floods last summer the photo shoots didn’t run as smoothly as was planned, and made it somewhat difficult for photographers to take pictures of the campers. Brent didn’t let that stop him from making this first time successful. Brent worked hard and made the trip to Boone from Cedar Rapids several times that week making sure that every camper that needed their picture taken was taken." Channon Timm, Heart Connection

"For as long as I have known him, Brent has always embodied the values of citizenship. During the most difficult moments of his life, as his daughter was being diagnosed and treated for cancer, Brent always made sure his family came first. Throughout the entire ordeal, he kept his faith strong and remembered the values of stewardship and selflessness." Brian Martin, Dance Marathon

Brent is very humble about the award. He doesn't see what he does as "anything different than what others do" but I must say our entire family is quite proud of him! Brent has a heart for helping others and I love him for that.

Brent will have a meeting with Clay Jones, CEO of Rockwell on Monday. The article for the magazine will come out soon. And we are so excited that $500 will go to Flashes of hope, that will help us to photograph 20 children!

We head out bright and early in the morning to camp. We hope to photograph 120-130 kids. Please pray for good weather, these are outdoor shots and we have one day to get them. We are so excited. We both feel that we get way more than we give by doing this photos. The time with the kids is priceless and our photographers are the best.

Congratulations Brent, I am so proud of you and you deserve this award!
Christie

Glasses

Several months ago I noticed that Mikayla was squinting and pulling things toward her when she was looking at them. She wouldn't do it all the time but enough that I started to question her on what she could see.

The next month when we went to the hospital I mentioned that I was concerned about her eyes and asked if that was a chemo side effect. I was told it was not a side effect but they would test her. They did a little eye chart they had in the hall and said her vision was 20/40 and that was fine for her age.

But the squinting continued off and on. So, I called and made the appointment. While we were waiting for her appointment she went to the pediatricians for a normal physical and they also tested her eyes. They said again she was 20/40 and that was within normal for her.

That is when I began to start feeling like a paranoid mom. I considered cancelling her eye doctor appointment, but then decided it wouldn't hurt anything for her to go and be checked out.

So, off to the eye doctor we went on Monday. I was quite surprised to learn that Mikayla's vision has lots of problems. First off he noticed a pretty substantial astigmatism. Then he stated that she also had amblyopia, which is more commonly known as lazy eye. Children with this wear a patch on their good eye to make their bad eye stronger. The problem is Mikayla has it in both eyes. So the only way to fix that is to giver her a very strong prescription for both eyes.

So, we went to pick out some glasses for Mikayla. As you know she is my fashion queen so this was fun. We tried on many pairs and she looked at me and said "My we should probably get a couple pairs don't you think?" HA! NO! She picked out a very cute pink pair with hearts first thing. But I told her to keep trying different pairs. She narrowed it down to two and she couldn't decide. She looked at me and said "which pair matches my outfit better?" I laughed and told her that she would have to wear these every day, all day so she needed to find something that would match everything she wore.

So, she made her decision and I must say, she looks pretty cute, don't you think?

We weren't supposed to get them until next week (which she would have been at camp) but they came in early so we picked them up yesterday. She didn't seem to notice much of a difference, at least she said she didn't. But we tested her on seeing a few things and when she realized that her glasses allowed her to see things she couldn't see before she was pretty excited. She wore them all night last night and when she took them off to go to bed she told Brent "Wow, everything is really blurry!"

The doctor mentioned that this vision problem could have caused her problems in school. I am anxious to see if that was the case or not. She did ok in school but she did have her struggles. And now seeing what she couldn't see, it is no wonder reading and recognizing letters was hard for her!

She is pretty excited about the glasses but has made a couple comments about not wanting people to laugh at her. So, I know she thinks about it. But we tell her the glasses make her so cute no one will laugh.

Oh and in case your curious (because I was) the eye problems is completely hereditary and not a chemo issue.

Today is the last dose of oral chemo, June 12, 2009 has been written on her medical file for 2 years now. And today is that day, her official off treatment day. She will get steroids still tomorrow and then she will be done with all meds except Bactrim and troches. It is almost surreal, like it isn't really happening. But it is here and we are so very excited!

We will be busy today and tomorrow packing Mikayla up for camp. She is excited to go swimming (in the non-flooded pool!) and horseback riding and hanging out with her friends. I am excited she gets this opportunity!

Have a great weekend!

Christie

Last Chemo treatment

Today we headed to Iowa City for our final chemo treatment and spinal tap. Wow, was it a day!

With the boys being out of school we decided with her final chemo that we wanted to go as a family. So the boys went with us. We tried to wake them earlier than Mikayla so they could eat breakfast before she woke up. Going NPO (no food or drink) before spinals is hard on us we didn't want the boys to have to go too.

We checked into clinic and every step we thought, this is the last time...

We got to have Mary Lou as our nurse today which we were so happy about since it was our last chemo, plus she is so good with Mikayla on spinal days. Mikayla had a visit from Christie, her camp counselor come and sit with us in clinic too. This gave Mikayla the much needed boost for her excitement for camp (she leaves Sunday!). Morgan (our DM rep)also came to help us entertain the boys during the spinal tap. It was the perfect way to spend our last clinic day, it was much like a party!

Final port access

And then, low and behold a party did come to our room. Emily from childlife came down with Kirsten, who does music therapy at the hospital. They brought presents, a big sign and cookie cake to celebrate the big occasion. They also sang her an end of chemo song. We had a real party going on in that clinic room. Mikayla was loving it and at one point I even think I saw a tear forming in her eyes. I think this is a very special day for her! I wish I would have video taped the song and celebration because it was amazing. It brought tears to my eyes and goosebumps to my arms, just realizing we are at the end! These nurses, doctors, child life and all the UIHC staff have become friends that we will never forget. And the celebration was amazing!
Mikayla and Dr. Tannous

We were having a great time but we were also there to do some business. We got her last dose of Vincristine in her port. Her port has been accessed for the LAST time (hopefully). We headed for her spinal tap and she was in great spirits. Usually I have to hold her hand and rub her head but today she did it all alone. This left me to actually SEE my first spinal tap. I can honestly say I am glad I waited until the last one to actually see what they were doing. All the other ones I was preoccupied with keeping Mikayla happy (she is awake but loopy during spinal taps). She is known for coming out of the clinic grumpy (usually kicking and screaming)after spinals but today she was just in a mood. She didn't want to say good-bye to anyone she just wanted to leave.

We met with surgery about her port removal and had to go downstairs after the spinal to meet with anesthesia. This was NOT a good idea. We sat in the waiting area and you could just see the color leave Mikayla's face. She said she was going to throw up so we quickly tried to get a bucket for her. I took her into the bathroom and she just sat there not saying anything with continuous tears running down her face. Her eyes kept rolling back into her head and I honestly was getting VERY nervous. I kept talking to her and she said she was ok. She fell asleep on Brent was still not feeling well. We finally got through the surgery check and headed home. She slept the whole way home.

Shortly after we got home she did throw up. Those spinal taps just do that to her. But as soon as she did, her color came back and so did our sweet little girl. She is feeling fine now and even wants to head to swim lessons. Can you even imagine? It has been a rough last spinal day, but I keep saying, it's all done now, NO MORE!

We still have 4 doses of chemo to give at home and 5 days of steroids. But we will get through that too.

I can't explain all the emotions I went through today. My eyes welled with tears a couple times. It is a relief to be done and yet there is that scary aspect to it.

June 24th is when Mikayla will have surgery for her port removal. Then we will be Done DONE!

I have more to say but we are off for our evening activities. It was a good day, an emotional day and hard day all in one. Everyone was exhausted when we left the hospital, I think we were emotionally drained. :)

Christie