Much better Tuesday

Tuesday was a much better day. She still woke up with a barky cough and a lower fever but she still wanted to go to school. Her temp was back to normal by noon when the nurse checked it because I had called her to check on how Ellie was feeling. She hadn't been coughing a lot. I made a call into her primary doctor here and they did want to see her because by the sounds of it we thought it might be croup. But the results were good and Doc didn't think she had croup. Just throat iritation from drainage, a little cold maybe. So she went back to school today, Wednesday. Last night ended the better day. We were invited to a UNI Volleyball team dinner at the coach's house!

Through a foundation called Friends of Jaclyn Foundation, www.friendsofjaclyn.org, Ellie was adopted by the UNI Volleyball team to be a team member. Our family is to support them and they are going to support us and involve Ellie in a lot in their activities. So we got to meet them last week at the end of a practice and last night since we were home we got to go to their team dinner. It was nice outside and the kids played on the trampoline, volleyball and soccer. The team, coaches and us hung around and talked, shot hoops, some team members found a pogo stick and other toys to try out. It was an all around fun evening. The coaches' kids took Ellie under their wings and showed her the ropes of playing volleyball and trampoline fun. Nate had his own fun flirting with the girls, getting tickled, chasing balls, riding skooters and stuff. He also decided to go down their slide which was kind of steep and bumpy. He got launched off it and face planted in the dirt and grass. He was so cute with a muddy spot below his left eye. He's a wild maniac as Ellie calls him. Fun times, fun times. He ended the evening carrying around a large bag of grapes eating them til he got home.

If you know someone who has a child with a brain tumor or had a brain tumor you can refer them to Friends of Jaclyn Foundation. www.friendsofjaclyn.org They find college sports teams to partner with families to adopt the kids who have the illness. It is such a neat thing. We are having lots of fun already. The volleyball team surprised us with t-shirts for the family and Ellie got a special UNI Volleyball. They taught Ellie for the first time how to pass a volleyball and are trying to teach her to set and hit it but she's not up for that yet. Although Ellie is convinced she already knows how to play. It's so cute.

So that's a little bit about the fun things we've been up to in the midst of the disappointment. Ellie has an MRI next Tuesday, May 4th in IC that we will be taking her to. Prayers that there is still no signs of tumor regrowth. This will be a 12 minute stealth MRI that they don't need to put her to sleep for. We are going to try it without the trauma of being put under. Then we will get results from the radiation oncologist and do pre-op for the scheduled surgery Friday of the week after next, May 14th.

Toodle-oo

Bummer day

Well we had a great time swimming Sunday night for two and a half hours with a big water slide and stuff. Ellie slept great and when she woke up she had this dry barky cough. I had a feeling that was going to be an issue but I was hoping it was just due to dry room and would quickly go away. Well we got to the hospital and they took her back to do pre-op stuff and they found a fever of 38.3 Celcius which is 100.3 abouts ferenheit. They didn't like that. Then they heard her cough every once in a while and didn't like that either. They listened to her lungs, she reported she felt fine and we were hoping we could just go on. I really thought the cough was from the dry room. The fever never went down and she coughed when they tried giving her the first medicine to calm her down so they stopped everything. There was a lot of waiting around and the stress mounted as we waited to hear when the anesthesiologist and Dr. Gantz thought. Well they decided no. Not today. Didn't want to risk her being sick and possibly having complications. So we went home, me in tears, dad frustrated and Ellie happy, "it's ok, mom, cause I missed Lily anyway." Lily is one of our cats. Something that was the sweetest thing Ellie said to me when she saw me upset was, "it's ok to be upset mom, everyone gets upset sometimes." Sounds like something Mrs. Bromwich, Ellie's kindergarten teacher, the school nurse or counselor would say. Such a sweet supportive thing. Love her for that. She makes me smile. So surgery is rescheduled for Friday, May 14th. We will try it again if Ellie is healthy. Thanks for all your prayers and support. Means the world to us. Love you all!!

Surgery Monday

Well Ellie is scheduled for her surgery tomorrow. Her surgery is at 8am and we have to check her in at 6:30am. We are staying over night Sunday night at a hotel with a pool and a big slide. Ellie has seen it in Coralville and asks when we can stay there so we told her the next surgery we will. We hope to be sent home on Tuesday if all is well with her. She may need to stay one more day though they said. We pray it all goes well since they've done this surgery before and it has worked for the other kids. Dr. Gantz is the lead surgeon and there will be residents and many nurses in on the surgery. Please pray for them and for Ellie's strength during and after surgery.

Hi UNI Volleyball Team!! We had a blast meeting you! Ellie has been playing with her volleyball and the kids wore their t-shirts today!

We will update the blog so people can keep up with her progress on Monday!

Thanks for all the prayers and support.

Surgery scheduled

Well we went to the appointment with who we thought was a neuro-opthalmologist like I mentioned in the last blog. We got there and they had Ellie read letters and then another lady came in and told us she thought we were in the wrong doctor's office because she read the notes. So we told her yes we knew we were waiting for the appointment with Gantz and we were confused why we got this appointment with a totally new doctor in a new area. Anyway, we said we wanted to be seen today because we took off work and school. She got us in upstairs in Dr. Gantz's office and his fellow that followed Ellie when she was in the hospital did some preliminary testing to see how her nerve and muscle function had recovered. She put a scope down Ellie's nose to look at her vocal cords and she said they look good. She explained to us the surgery and we asked questions. Dr. Gantz then came in and reiterated what Dr. Woodson said and he said let's schedule her. So we decided to schedule her in the next 30 days so we could get pre-op out of the way. So we scheduled her for Friday, April 23rd. She would only miss one day of school and could go back on the Monday if everything went well.

Today I got a call from Dr. Gantz's office asking if we would be willing to bring her on Monday the 26th for surgery. They had something come up for someone who has a more pressing issue. We agreed especially because others agreed to push Ellie through quicker on her first surgery. So she will miss more school now which is a bummer but it will get done. I will elaborate on what they do during the surgery. It's very interesting and I know many people want to know. So there is more to come in the future.

It's been a while

Well I decided I needed to update this blog. We have a good team of walkers for Relay for Life next weekend! T-shirts are ready for TEAM ELLIE and we are excited to get them and wear them for the walk. It's only a 12 hour walk so that is nice, but it's all night instead of during the day. 6pm Friday night at the McLeod center is the survivor lap then the walk continues until 6am Saturday morning. We are going to try to camp out with the others so we can be there to greet team members and walk when needed.

Ellie went to the eye doctor in Iowa City last week and her eye sight isn't improving anymore. Actually it was slightly worse than it had been before so they increased the atropine drops in her left eye to every day to make it blurry for the left eye so the right eye can work harder at focusing in hopes to improve it again. We got a random call this week from U of I Hospitals and asked if we could take Ellie on April 7th to see a neuro opthalmologist. Aparently Dr. Menezes ordered this so she'll be there for that appointment. We don't know what to expect, maybe it was ordered as a result of seeing her results from the last eye appointment. I don't know but we will deal with whatever it entails.

I have called to request the appointment with Dr. Gantz and am still waiting for a call from them to tell us when it can be. He is an amazing doctor that is in demand so he has a busy schedule. I'm trying to be patient with this but sometimes it's hard when you are anticipating it and want it to happen when she doesn't have to miss school and know it all relies on the doctor's schedule.

We are still waiting on results from the genetic testing. We anticipate results between four and six weeks so that would put it any time between now and the 15th of April. I'll share those results when I can. I don't know if I want the results to be yes they are genetic because that would give us a reason she got one, or if I'd prefer non genetic result because then we'd all be in the clear for genetic tumors but it would leave us without reasons as to why Ellie got hers....

Thank you everyone for your many wonderful birthday wishes. It was touching to read everyone's messages. I was overwhelmed in a good way. Thank you all. I wish I could see everyone in person to thank personally for all your support, love, prayers and company during this past year. We love you all!