Beam Signing

Here are a few pictures from the beam signing Thursday. I put them on here out of order and I am to lazy to fix it. :) Have a happy weekend. :)

First Day of Chemo - Beam Signing

Makenzie got a follow up MRI on Tuesday. Everything looks good. There is a little bit of fluid that is leaking up through the hole created for placing instruments to remove the tumor. It is collecting on the outside of her brain, between the outside of the brain and her skull. It has been building up since surgery. We are watching that... if it continues to build up then she may need a second shunt placed to drain that fluid off. We will get another MRI on July 8th to check on that.

The neurosurgeon gave his OK to start the chemo so Kenzie started the chemo pills (Temodar)last night. So far, so good. She did not get sick from that pill. We are praying that she will continue to tolerate this medicine well and that it will be effecting against what remains of her tumor. Please, keep her in your prayers as she takes this chemo. She will take it 5 days a month for at least a year.

Makenzie and mom also went down to the children's hospital this morning for a beam signing ceremony. They are expanding the hospital. Many kids who are or were patients at PCH placed their hand prints and signatures on two special white "beams of hope" that will be a permanent part of the new hospital. PCH really is a great place. Like they always say at fundraisers, you hope you never need it, but it's nice to know it's there.

We have had so many people help us out in so many ways over the past few years and during the last month or so. We'd love to send thank you cards to each and every person, but there are too many people... and I am sure we are not even aware of all the people who have done something to help us out. We had people watch our kids for long hours while Kenzie was in the hospital (mostly Grandmas, Grandpas, and Rachel). We had more good food brought in that we knew what to do with. Many of you visited Makenzie in the hospital and brought her (and her brothers) gifts. We have many many people, some who don't even know Kenzie that well, fast and pray for her. We've heard of kids in her primary at church who have never fasted before fast twice in one week for Makenzie... that really amazes us and we appreciate it. We've had people organize and contribute to fundraisers to help with the expenses associated with medical bills, travel expenses, and all that goes with battling major health issues. We truly appreciate all the support we've received from so many of you.

New Baby

Meet Hayden Paul...

Just a quick CONGRATULATIONS to my brother's cute family. They just had their first baby. He is soooo cute!! The kids are so excited to have a new cousin. This is the first baby we have had on my side of the family since Brayden. 4 years. That is too long. He is tiny, sweet and adorable.

Happy Times

We have failed to update the last few weeks. We are trying to find our summer routine. It has been fun having Chris around. The boys and Chris are busy playing Wii Cabella's Legendary Hunts. Brayden got it for his birthday and the boys are hooked. They are so cute being in there with their dad getting excited about shooting animals. It is a pretty cool game. There is a rifle that goes with it and that just makes it really fun.

Kenzie's MRI didn't go thru. Mix up at the hospital. They were going to start chemo this last week and then decided to wait last minute. Her neurosurgeon wants the MRI before we start. The profile came back on the tumor and it recommended the same drug that her Dr. wanted to use. It is called Temazolamide (sp?). It is a pill that she will take at home. She takes it for 5 days and then will have the rest of the month off. They are also talking about putting her on Celebrex because it reduces blood flow to blood vessels. Her tumor that was removed was filled with a lot of blood vessels. It looks like this drug has fewer problems that a lot of other Chemo drugs. Hopefully this will be the one to shrink it or destroy it. Kenzie is doing really good about the whole thing. Me on the other hand...total stress case. Since we don't know how she will react to this drug it makes me on edge. We really appreciate all the help that has been given to us. We are grateful for all the prayers, fasting and love given on our behalf. We are truly blessed.

Today was a fun day. We are starting to get our house in order. We told the kids one room a day and then we can go swim as a reward. A SUPER CUTE friend of ours is out of town and is lending us their pool. It is an awesome pool with a slide. The kids had such a great time. Me and Chris even got in despite the cold water. It took me about 20 minutes to get in. Here are the kids from today. I could not get one good picture with all the kids. I do like fun picture and I guess this is just as they are... A Circus :)

School's Out

Kenzie is doing well right now. She seems to get a little better each day. We will see the neurosurgeon next week for a follow up/check up and the neurooncologist to find out what the treatment plan will be. Kenzie did go to school for a couple hours on Tuesday to work on her autograph book and Thursday morning for the end-of-year class ice cream party. She wanted to see her class again and tell everyone bye for the summer. Carson also graduated from Kindergarten today and lost his first tooth yesterday. He's got a little lisp going on right now. He is getting to be a big boy.

Home At Last

Makenzie came home today. She got out around 10:30 this morning. She wasn't home long though... she had two birthday parties to make it to. She will do outpatient physical and occupational therapy on this side of town for a little while. And, or course, she'll have some follow up appointments down at the hospital. We still don't know what the next round of treatment will be. We are still waiting on one report about the DNA of her tumor. Then we should find out what is next. For now, Makenzie is looking forward to visiting her class at school next week and having a relaxing summer.

Still Pluggin Away

Makenzie is still in the hospital, still improving some each day. She got moved to a private room on Tuesday night. That is heaven. She is still doing plenty of therapy each day. And they want to run a few tests just to make sure her memory and cognitive abilities haven't been affected. She got all her staples out, bandages off, and port de-accessed. All her meds now are just pills. So, she is more mobile and comfortable. Her brothers have been able to visit almost every day since Saturday so she has been happy to see them regularly. They spend time in the playroom and out on the playground playing. She should get out of there on Saturday. She is definitely ready!

Home?

Beginning to wonder if we will ever be able to come home. :) Our new roommate is nice but still not the same as having our own room. Kenzie is a trooper. I just had a meeting with a bunch of people from the hospital. They are wanting her to have more tests. They are tests to check memory and things that she might need some help with as part of the recovery process. They are saying we can go home Saturday. I asked them to PLEASE be done in the morning because she has two birthday parties to go to. At least that is this week. They tried to say they wanted us to stay the whole weekend but I was going to say no way. They don't even get twice-a-day therapy during the weekend. She is making great progress everyday. I think that is why they want her here longer. As long as she is making huge improvements it is beneficial to have her stay here. I just wanted her home for Sunday so we can celebrate Brayden's birthday. His Birthday is today. He is 4. Carson was so funny this morning. He said "Happy Birthday Brayden. Boy mom, I think he grew over night. His arms look bigger." I thought maybe he would wake up this morning and decide he was not going to be mischievious...no such luck. We are at the hospital and he won't leave anything alone. He is so Dennis the Menace. :) I LOVE him. :) I will post some pictures of him later. Thanks for all the help we have received. We really appreciate it. :)

Saturday and Sunday

There's not too much new to report on the medical side. Kenzie is basically in the hospital for physical therapy right now. We are hoping she will be able to come home the middle of this week. She's been working on Mother's Day projects with Grandmas when they spent the night. So, we had our Mother's Day in the hospital today. The kids all gave mom their presents. Kenzie made cards, a picture frame, and a flower arrangement. She also bought a little book from the gift shop. The boy's made some home made cards and got mommy some new flip flops and some her favorite candies, LemonHeads and Red Hots. Mom also got some homemade banana bread and cookies. Brayden didn't want to give up his card though, he signed his name to it but he thought it was a birthday card for him since his birthday is Tuesday.

Kenzie did get her room switched. Her previous teenage roommate was rather cranky from the pain she was in and she taught Makenzie a few new words during her night time tantrums. Her new roommate is her age and is a much better mood. Those floor rooms are miserable, tiny, cramped, and you have to have a roommate. And that is stinky even when you have a good roommate.

Friday

Friday was another good day, two good days in a row now. We're back on the floor with screaming babies and rooms so small you can barely move. Kenzie did 2 PT/OT sessions. They worked her hard and she did well. She is getting stronger. The doctors say if she continues to gain strength and do well then we are looking at going home on Tuesday or Wednesday.

She stopped one of the two seizure medicines she was on. So, now, hopefully the loopiness with go away. We did get some preliminary pathology results. It appears that the tumor is still low-grade. Of course, that is good news. We also sent a sample to the Molecular Profiling Institute, a lab here in Phoenix that analyzes the DNA in each tumor to see if there is a specific treatment that might be more effective. The brain tumor team (a large group of doctors) will meet on Wednesday to discuss what the treatment will be for the remaining part of the tumor that is inoperable.

For the fun stuff, Grandma Alice is spending the night tonight. She gets a turn on the yucky, uncomfortable chair. The Phoenix Zoo brought down some animals for the kids in the hospital to see. They brought an African hedgehog. We learned some interesting, disgusting things about Hedgehogs. They roll around in lion poop and pee so they smell like lions so no other animals will mess with them. But, Hyenas will eat them. the only trick is getting them to unroll so their little spines aren't a problem. Hedgehogs unroll when it rains, so the Hyenas, to simulate rain (you guessed it), pee on the hedgehogs. Then, when they unroll, they eat them. Appetizing, right? They also brought rabbits, Fire Bellied Toads, and rats. The school teachers at the hospital also stopped by. But I don't think we are going to worry too much about school since there are only 2 weeks left.