Review

Well...We had our fabulous weekend. We had a fun time getting to go to the Miley Cyrus concert. If you haven't read previous posts...Makenzie was given 4 tickets thru PCH (THANK YOU!!!). We had a great time. Kenzie just had a blast. The concert was good. Our seats were in a suite. Miley was a little more, let's be nice, and say grown up...I am going to leave it at that. What is important is the girls had a FANTASTIC time. We also get to have a teaching moment about modesty. :) The pictures are of Miley, Makenzie, Megan Hancock and a friend from camp rainbow Makayla. Both girls were just so sweet. They really had a great time. :) The rest of the weekend has been nice. Pretty laid back. We went riding quads with Chris's parents. We had a fun time. The boys just LOVE to ride. Chris's parents just bought them and we were giving them a test run. I went to the Womens broadcast at the church. It was nice. I am a little over emotional lately so it took a little work keeping it together. Now we are ready to start another week. It should be a good one. Carson's birthday is on the 10th so we are super excited for that. :)

Hard Lesson

This morning was a pretty great morning. I went hiking with a few friends. We changed it up a little and went to Thunderbird. It was close to a 2 hour hike. GREAT workout. Came home did computer stuff. Chris had to play the piano for a memorial service. Before he left he told the kids if they did a good job cleaning we could do something fun with Gma and Gpa. They came to visit about a week ago and will be here until the first part of October.
We will call him "C" to save this person from any embarrassment. C always has a hard time cleaning. Does not see the point. C just whines and complains the whole time. All C had to do was about 15 minutes picking up and C would have been done. C proceeded to get worse and ended up in timeout. C was almost done and C decided to really give me a really hard time. I ended up giving ME a time out so I could cool down. I got kick and mauled as I put C back in time out over and over. C's dad was not so happy when he came home. He waited to talk to C. I remember as a kids that the wait was always worse than the punishment. C had to apologize and serve his two time outs. The last of the punishment was C had to stay home with mom and miss the movie with Gma, Gpa and the family. I cried when they left. C was so sad. What a hard lesson to learn. I do know that it is for the best. C is happy right now eating Ramen and watching Charlotts Web. I think next time C might have an easier time cleaninig. :) I sure LOVE "C" I think that I will let C earn a movie next weekend with mom for doing his chores all week. Hope you enjoy your weekend. :) Terri

I just have to show you what a sweetheart my Carson is. I just LOVE that little boy. Such a tender heart. Always thinking of others. This morning was not the best of mornings. Kenzie was struggling. I was struggling with what to do. After things settled down Carson walks in and gives Makenzie this note. He told her how much he loved her and he was able to make it all better. Look at this note... It says: I Love you Kenzie and me. (I wish I could figure out how to put the picture where I want it) This just melts my heart. :) LOVE YOU CARSON...

KTAR Radiothon

We are surviving this week. Just a super busy week. Kenzie had a ppointments on Tuesday and were not home all day. We get home and there is a message about feeding the missionaries...WE FORGOT! Sorry to the missionaries. I also told a friend I would take food in that night...FORGOT! Sorry!!! That seems to be the going theme these days.

My poor children...Questions asked as we leave for school...Are we going to be late? NO! Right on time. You have one minute to be in your class before the second bell rings. RUN! It is something I want to work on but there is a lot of room for improvement. :)

Makenzie and I were interviewed on KTAR tonight for the Radiothon for Phoenix Childrens Hospital. It was a lot of fun. It was pretty crazy in there. The interview was a little shorter than I would have hoped for. I had a lot more to say (imagine that). Here are a few pictures I pulled of the website. I hate putting a picture of me on there but Kenzie is in it and so is Gaydos from KTAR that did the interview. Kenzie did great as always. :)

Home from the Hospital - Big Surprise!!!

Kenzie is home from the hospital following surgery and doing well. She will stay home from school for a day or two to rest up and then she will go back. She will get scans again in about a week just to make sure the new shunt is doing its job. She got a scan this morning and everything looks great right now.

Kenzie got a big surprise this morning. A nice lady who works for the construction company (Perini Builders I think) that built Chase Field, US Airways Arena and Jobing.com Arena visited Makenzie and gave her 4 tickets to the upcoming Miley Cyrus concert. She will get to watch the concert from their company suite. Needless to say, she was surprised and super excited. She is a big fan and has wanted to go to a concert for some time now.

Brayden Preschool

We had a great Sunday today. Went to go to church and the car would not start. Our neighbor gave us a ride. We got there just in time for me to give the opening prayer. I was released from my Webelos calling in scouts and asked to be the an assistant leader in Laurels. That is the 16-18 year old girls. I am so excited!!!! It is going to be a lot of fun. We came home and had dinner and made treats. Our home teachers came over and helped give Makenzie a blessing. We are so grateful for them. They help us whenever whenever we need it. :) I delivered treats to a friend and came home to mass chaos. 2 very roudy boys. They are now getting into bed. I love being able to lay with each of my kids. They love it and it gives us a chance to talk. I hate bed time trying to get them ready..BUT once they are down I look foward to laying with them. Kenzie goes in for Surgery in the morning. She is a little nervous but doing well. We know she will be taken care just like always. We are so grateful for a Father in Heaven who loves us so much. I KNOW he hears our prayers AND answers them. We have seen so many miracles. Kenzie is a miracle everyday and so blessed to have such a strong example that teaches us WAY more than we could teach her.

Here is our little stinker who just tore up his plastic bed cover. He does not like time out which is where he resides at this moment. :) I should go take a picture...too lazy. Here are some pictures of this cute little guy for the first day of preschool. :) terri

Surgery on Monday

Makenzie will have another surgery on Monday. This one should be a little quicker and easier. The neurosurgeon will insert another shunt to drain the water that is collecting between the outside of her brain and the inside of her skull. That water has begun to put a little too much pressure on her brain so it is time to get rid of it. She should only be in the hospital until Tuesday and probably back at school that same week. Pray for a smooth, complication free surgery.

Chemo is going OK. She feels good, but this chemo affects her blood counts a little more, especially her platelets. She has had to have a couple of platelet transfusions. MRIs how the tumor has been stable since surgery in April.

We still need to report on and post some pictures of summer vacation... it was loads of fun. Soon!

First Day of School

It has been too long since we have posted. Summer has just flown by. I have a lot more to post. Many vacation pictures to post. We had a great time. The kids started school on Monday. I am happy and sad all at one. Happy to find a routine again but sad I won't have my kiddos around to brighten my day. I still have one bright spot in the house. He only has one more year before he will be in Kindergarten. I am already sad about that. He is my side kick. He is fun to hang out with. He makes me laugh :).

The kids had a great time at school on Monday. They LOVE their teachers. Carson is in 1st and has one of Makenzie's old teachers. Heis so excited. He has a few friends from church in his class and he is super excited about it. Carson is very social. He LOVES to play with other kids. He makes a friend wherever he goes. Kenzie is already in 5th and she LOVES her teacher. I can't believe she is half way thru grade school. YIKES!!! High School will be here all too soon. Kenzie is happy to be able to go to school and not stuck at the hospital.

Kenzie already got a day off of school. She had 3 appointments. MRI, Neurosurgeon, and blood counts. It was a long day. I had Brayden with me and my little daycare girl. It is a little crazy. My mom came up after work and was able to help with the kiddos. Thank heavens for mommy's. I don't know what I would do without mine. :) We got some not so great news. The neurosurgeon did not like the extra fluid that is pushing on Kenzie's brain. It is bowing the center of the brain a bit and he is unhappy that he let it go this long. Kenzie will have to go back into surgery to place another shunt on the right side of Kenzie's brain. She still has the one on the left but the shunt can not drain where this fluid is building up. All I can say is yuck!!! I keep hoping there is another reason this is happening. Maybe a blessing in disguise. PLease pray that the fluid will go away before the surgery. They have to plan her counts around her chemo schedule. That pretty much sums up the week so far. Busy, busy, busy. Happy first week of school. :) terri

prayers

I wanted this to be it's own post. We really are so thankful for everything that has been done for us. We truly are grateful. One thing we know, is most important, are the prayers. We know that we have a loving Heavenly Father. It is so evident. We have been truly blessed. We are asking for more prayers. Makenzie has had some fluid building up around the outside of her skull. It can happen after a surgery like hers. Water seaps thru the skull where he had to cut and it is just sitting there. She had another MRI last week and it showed not much changed from the previous MRI. He is still watching it. She will have another scan around the time she goes back to school. If the water does not go down or away by itself he will have to do another surgery to add another shunt. We really don't want her to have to go thru that. PLEASE pray that it will go away on it's own. We know that thru faith all things are possible. Again, thanks for everything, you are LOVED! :) terri

Happy

I just want to start off saying I LOVE summer. I really don't like the heat, but something about summer just makes me happy. I LOVE that my hubby is home for the summer. Makenzie and I were talking about how most kids are not able to have their dads home for 11 weeks in the summer. We just get to be together. We hang out, play Wii, swim, go to summer movies, visit family, stay up late together, Chris and the boys fish, de-clutter (still a work in progress), have friends over. Just fun stuff. The only bummer is Kenzie having to go back on Chemo. That has kept us home for most of the summer but we really do like being home. We LOVE just being with each other. I feel really lucky because at this stage my kids really get along well. Not too many problems. Right now they are ganging up on me and are BEGGING for a dog. I am feeling bad because I am ANTI dog. Just ask my friend Karolyn, we share the same feelings ;) I once had a dream that Chris bought the kids a dog. I was so upset crying and saying, no! Karolyn won't come over now. I had to laugh. I know my kids would take care of it. They would love it. The problem is me. I am selfish. I really don't want the cost and the upkeep. We will see what happens. Me and Chris were actually arguing, um I mean disagreeing, about what kind of dog we would get. If we got one it would have to be a little dog. Chris says no way. He would get made fun of if he brought a little wimpy dog fishing or hunting. My point is that if I am the one home with it, it would have to be small. :) I can't even believe we had this conversation. My super good friend daughter Paris got a new dog. He is a cute little guy. She brought him over the other night for the boys to see. They had so much fun. Hope eveyone is have a fun summer. These pictures are for you Karolyn.

HAPPY SUMMER . :)

Blessed

Just sitting here very grateful tonight. Blessed that Kenzie has done well since her surgery. There is a sweet little family in Utah that we have watched over the last 16 months deal with a very mean aggressive brain tumor called a DIPG (Diffuse Intrinsic Pontine Glioma). Most children die within the first year and very few make it past 18 months. Her name is Sadie. She is adorable. She just passed away on the 25th. Her funeral was today. If you would like to read about her story you can go to her blog.

http://www.sadiehuish.blogspot.com/

Please pray for their family. One thing that really made me cry was she was to the point where she could not communicate. She has to blink thru the alphabete so they would know what she was saying. Her wish before passing away was to get her ears peirced. She also had LDS recording artist Hilary Weeks come to their house to sing her a song. Amazing little girl.

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.

Better Day Today

After the seizures yesterday morning, Kenzie went back to ICU for a while and was on some serious anti-convulsants. She slept most of the day. She spent the night in the ICU. She did all her therapy this morning and played with one of the healing dogs. She is still just a little loopy from the anti-seizure drugs. But she is talking plenty and making sense! She is still on two anti-seizure drugs, but not the one that makes her high. She will probably be on an anti-seizure drug for about 6 months after getting out of here... just to be safe. They were not able to pin down exactly why she had seizures, but it wasn't increased pressure on the brain, blood clots, or anything really serious... probably just a little complication from brain surgery and a combination of little things coming together.

Carson got to come down and visit Kenzie today. She was so happy to see him she cried. He hung out for several hours. They watched movies and went out to a little carnival at the PCH playground. Channel 12 is doing a Give-A-Thon here (the carnival was part of that). This place is crawling with celebrities and athletes. Kenzie actually was interviewed live on TV during the 5:00 news. Over the past 3 years she's become a regular on the TV. She could have a career possibility there... anything that involves talking a lot would be a good possibility. So, now that the seizure episodes are hopefully behind us, we are back to occupational therapy, physical therapy, and all the other therapies twice a day now. She is working to get strong so she can get out of here. If we need to do anything with the shunt, that will be several weeks from now and would most likely be just a couple days in the hospital.

High as a Kite

This afternoon/evening have been pretty good. Kenzie slept almost the whole day. She woke up around dinner time and was pretty chatty. The medicine they have her on is pretty heavy duty. She kept telling us random things. Who is behind you, what's his last name, they moved awhile ago, pigs rolling around in mud. We were laughing and Dr. Moss (neurosurgeon) said oh she is "high". She is getting ready for bed. She is still with it enough to fight me brushing her teeth. We are grateful for all of the extra prayers today. They were felt. We feel so blessed that nothing was wrong in the MRI. It is nice to have our own room again. The room my mom and her were in last night was noisy. I don't think her or my mom slept very well. The other little girl kept crying thru the night and the mom had the tv on all night. Sorry mom, thanks for staying with her. :) Kenzie wanted me to put one of her favorite scriptures on here tonight: 1 Nephi 3:7 : And it came to pass that I, Nephi, said unto my father: I will go and do the things which the Lord hath commanded, for I know that the Lord giveth no commandments unto the children of men, save he shall prepare a way for them that they may accomplish the thing which he commandeth them. Kenzie is such a good example of obedience. She is so wise beyond her years. She is always trying to choose the right. What a good example she is to others...especially me. :) Thanks for being so GREAT Makenzie...I LOVE YOU!!!!

Seizures This Morning

Makenzie had some seizures this morning which worried us. But they gave her medication to stop them and she got an MRI. There was some concern about the shunt being plugged or blood clots in the brain but everything was OK on the MRI. They figure it is just a result of the surgery, about 15-20% of kids have seizures following a brain tumor operation. So we are back in the PICU resting now. She is waking up from the medicines they gave her for the seizures. Everything else is looking good, CSF samples are showing no infection. Rehab is on hold for today while she rests up from the seizures.

Taking a Walk, Beau the Dog, and Music

First of all please ignore the hair. :) That was the only way to get it off her face and not bother her incision. If you are sensitive be careful when you look at the pics. :)

We are starting out a lot better today than we were doing last night. She has had a busy morning as you can see from the pictures. She really liked the music. They are really pushing to get her moved to the floor. I am not to interested because we would have to have a room mate and a much smaller room if you can believe. I hope she can get strong quick so she won't have to be in there too long. Her vision seems a little off. It is hard for her to find things. We have to help her and point it out before she sees it. I think it might be just time and healing for that to come back. Her left field of vision seems to be worse than the right. She is on a bunch of different antibiotics and one of them makes her very itchy. I was so worried last night that she would be thowing up and itchy. We said a prayer and she has not been itching since. :) She is eating crackers and visiting with some people. Go figure... They sent a speech therapist in the other day. We laughed. Whats even funnier is they are coming back. Maybe they are bored??? Needing someone to talk to them???

Makenzie has done pretty well thru the day. I think I had a harder time than she did. They moved her to the floor. :( It is like going from the Hilton to the motel 6) We have a roommate (she snores) in an little tiny room. There is enough room for one dirty chair for each patients family member. I am bringing my Clorox wipes tomorrow and scrubbing it down. My poor mom is the first one that get to have an enjoyable night on a dirty chair. I am so OCD. Kenzie got really emotional when it got time for us to leave. She had to go potty and we had to wait for a nurse. It seemed like it took forever. The problem with the floor is the nurses have 6 patients and the PICU they only have two. Big difference. We are now on our own. Hopefully she will spend most of the day in therapy so we won't have to rely on them as much. We had the BEST nurses in the PICU. They are just there to help you get better. They are great! I am hosting a little pity party if anyone wants to join. I just wanted to vent. I will get over it and tomorrow will be a new day. It will be good. Thanks Erin for taking care of Carson this afternoon. We REALLY appreciate it. :)

Good Morning, Rough Afternoon/Evening

Kenzie had a good morning. She ate a good breakfast, did her physical therapy, and was her talkative self. This afternoon and evening she has not felt well and has been vomiting. She got a quick MRI late this afternoon just to check. Everything looked OK on the MRI. So we are not 100% sure why she is feeling so yucky. It could be all the antibiotics they have her on, or she could have worked to hard this morning, or some combination of the two... who knows. Hopefully, she feels better tomorrow. Her doctor did say that her shunt appears to be working fine and the only reason she is remaining in the hospital is physical therapy. So, pray she feels better so she can continue therapy, get strong, and come home.

A Good Sunday

Makenzie had a good day today.

• Drain Tube Out- The external drain tube left in from surgery was removed today and the opening stitched up. The drain tube was left in to drain off CSF (cerebro spinal fluid) to keep pressure in her head down just in case surgery plugged up her shunt. So... now we will see if her shunt is still working right or not. If the shunt is plugged, then CSF will begin to leak from the stitches in the next day or so. If that happens, then they will have to replace parts of her shunt.
• Bacteria??? - An infectious disease doctor stopped by to say they found some bacteria in Makenzie's CSF. But it was some sort of weird bacteria they had never seen, so they thought it might have lab contamination. They took new samples of CSF to retest. In the mean time, Kenzie has to start courses of 3 different antibiotics just to be safe. One of them, Vancomycin, makes her get itchy and rashy so she has to get IV Benadryl which makes her really tired.
• Movement!!! - Kenzie is gaining strength on her left side. She is able to move her fingers and squeeze your finger. She is able to roll over and shift much easier. She walked all the way around the ICU with a walker today. Her jaw muscles are in fine form. Her nurse has named her "Motor Mouth".
• A Clean Spinal MRI - No cancer has spread to her spine. So that is obviously great news.
• A Huge Thank You - To all who have brought in food, stuff for the kids, watched our boys, called, emailed, fasted, prayed, helped with blessings, visited, etc. We have had young kids in Kenzie's primary class (and I am sure others that we just don't know about) fast twice in one week for her. And we never even intended for anyone to fast twice, just Sunday or Wednesday. We have had people pray in sacrament meeting for her, in tears, who barely know who she is. We really appreciate everything everyone has done for Kenzie and our family.

The doctor thinks that she will be in the hospital for about 1 more week. She can't wait to get home. We still don't know anything else about the pathology of the portion of the tumor that was operable. But we are in no hurry. We will just get through this surgery and recovery... get home, then worry about what to do about the rest of the tumor that is not operable. For those who don't know her history... when she was first diagnosed three years ago, the entire tumor was in the top of her brain stem, intertwined among healthy brain cells, and not operable. She did chemo for about 3 years and it did not grow for those 3 years. She stopped chemo back in early November 2008. After that, the tumor began to grow and spread up out of her brain stem. This surgery was to remove the new growth as it was a solid mass and all operable. Of course, we did not want her tumor to grow, but we are grateful it grew in a place where it was removable. So now, we are sort of back to square one like we were 3 years ago... an inoperable tumor in the top of the brain stem. We are guessing that she will end up back on chemo for a while. But, we will see.

HI from Makenzie

hi,
How is my favorite forth grade class?

My first surgrey went successfully!

Being in the hospital, is let me tell you, Stinky!!!!!!! BIG TIME!:(

I am kind of missing school, even though, I like it, YET I try to avoid going. :)

Kenzie wanted to finish writing this but she got tired. I am going to have her try and write a message everyday. It is good for her hands especially her left. She can not open her left hand. When it is open and she tries to close it, it doesn't close for a a few seconds as she thinks about it. She worked pretty hard today. The physical therapist came and had her walking with a walker. She did GREAT! Her neurosurgeon said that where he was diging is where all the movement is. Since she could squeeze his finger the next day tells him that he did not sever those nerves. He thinks she should be able to regain full range. Please pray that she will be able to heal quickly. Thanks so much for all the prayers, fasting and love that everyone has sent our way. We know that our prayers have been answered and will continue to be heard. :)
FunnY: Brayden asked Chris last night why I don't live at home anymore. :) Then he asked why I was living at Kenzie's Dr.'s appointment. :) He is so darn CUTE!!! He also said that he wanted monster trucks and barbie's for his birthday. :) What a crack up :)
Carson scored two goals in his soccer game today. He just LOVES to play. We are so proud of him. :) I really miss the boys. I can't wait to see them tomorrow. :) Also a BIG HAPPY BIRTHDAY to my grandpa. His birthday party was this evening. We just LOVE him so much. The pictures are of Kenzie's class saying hi to her. I promised that I would put them on here. Thanks Mrs. Devers and her 4th grade class for such a GREAT school year. :) She really misses you guys. :)

Little Improvements

Makenzie had a better today. She was awake for most of the day, alert, talking more, visiting with grandparents for a bit, watching movies, and getting her appetite back a little. She polished off a few bites of scrambled eggs, 1/2 a grilled cheese, a handful of fries, and a Krispy Kreme donut. And, it's not quite dinner time yet. She definitely misses home and her brothers. She is already asking about going home. But it will be a little while still. She is quite weak from surgery, especially on the left side, she can't really move her fingers on that hand. She also can't stand unassisted. She did about 25 minutes of physical therapy and did great. The surgeon doesn't seem overly concerned. He said it's not uncommon after brain surgery and he expects her to regain her strength as she recovers. Keep her in your prayers... she is a trooper.

Quiet, Uneventful Day

Makenzie spent most of her day today sleeping. She woke up this morning and ate some eggs and drank some Sprite, but after that, mostly sleep. The physical therapist came in and sat her up for a bit. She does have some weakness on her left side so she made need some physical therapy. But, the surgeon said her post surgery MRI scans look great and he expects her to regain her strength quickly. Other than that, we don't know much else. She should feel a little perkier tomorrow as that anesthesia wears off.

Out of Surgery

Makenzie was a trooper. She started her day early with an MRI that took over an hour. Then, a few hours just waiting around. She went into surgery about 1:00 and came out about 7:15. The surgeon said it took a while, there were a lot of blood vessels in the tumor (yes, it was tumor and not a cyst) and it was a race to stay ahead of the bleeding. But she did not lose enough blood to need to be transfused. He was able to remove all of the new growth. He did not touch the old part of the tumor that is down in her brain stem as that is too risky. And right now it seems that Makenzie did not suffer any damage from the tumor resection. She did wake up, move her arms and legs, and talk a little (I know, hard to image that she only talked a little bit). They will keep her sedated and resting throughout the night. We are not sure of the pathology on the new growth yet. The pathologist said it looked like low-grade astrocytoma, but the surgeon thought it looked more aggressive. We will get test results and the brain tumor team will meet in the coming days to determine what the next steps are. Right now, we are just thankful for a successful surgery. We are also not sure if she will need her shunt replaced or not or exactly how long she will be in the hospital. That will all get figured out in the next few days. We will continue to post updates daily.

Unfortunately, because of the swine flu scare, NO VISTORS ARE ALLOWED IN THE ICU right now. She can take phone calls, you can leave a comment on her blog and we will read them to her, and we can make deliveries to her.

Thank you, thank you, thank you to everyone who has called, prayed, fasted, visited, brought food, watched our boys. We are extremely grateful for the support.

Today was a good day. We are keeping busy having fun to pass the time. There is so much to be done to prepare for being gone from home for 10 days. I wish it was because we were going on a fabulous vacation. We found out today that Makenzie has to be at the hospital early in the morning for an MRI. They will take it of her brain and spine. They need to make sure that nothing has trickled down her spine. After the MRI we will have to wait until noon for the actual surgery. We will have like 3 hours to wait in between. Then they are saying 5-6 hours of surgery and it is a rough estimate. I think it all depends on what he finds when he goes in. We are so thankful to be blessed to have so many wonderful family and friends surrounding us. We feel your prayers. Thanks to all who fasted on Sunday and to those who are going to fast with us Wednesday. There is still a chance that this could be a cyst. We are asking for the best possible results. That it is a cyst and not a new malignancy. terri :)

Surgery On Wednesday 4/29

We met with Dr. Moss, Kenzie's neurosurgeon, this morning. He told us that the new growth that we had been told was a cyst is probably new tumor growth. Makenzie will have surgery on Wednesday to remove it. We won't know for sure whether it is a fluid filled cyst of tumor until they actually get in there to remove it. The good thing about the new growth is that it is a solid mass, higher up in her brain, and is operable (the original tumor is not operable because it is in the top of the brain stem and is not a solid mass... it weaves its way inbetween and around healthy brain cells). The surgeon will remove all of the new growth, but will not attempt to remove any of the old tumor as the risks are too great. He said it will be a fairly straight forward surgery, the part he will be removing is easily accessible. They will send what they remove to the lab to see exactly what the new growth is and what treatments might be needed. After surgery, Makenzie will stay in the hospital for about 7 - 10 days. 5 - 8 days after the first surgery, she will need a second surgery to revise her shunt since the first surgery will probably clog it up. Then, after the shunt revision, if all goes well, she will come home 1-2 days later. They gave us the option of doing the surgery tomorrow or next Wednesday, but we decided to wait so we could get everything in order and have a little fun as a family first. We will be fasting this Sunday, 4/26, for a successful surgery and the best possible test results. We welcome and appreciate any and all who would like to join us. We will post updates as we get any new information.

Update

I got a call this morning from the hospital. Her Nero Surgeon Dr. Moss wants to see us in the morning to go over her scans. I am a little freaked out because he never goes over her scans with us. It is usually her oncologist. We know that it has to be something to do with her shunt or the cyst. It makes for such a long day today. Just waiting to hear the results. Chris brought Kenzie home from school again today with a bad headache. Her eyes were doing some funny things. Chris called the surgeons office and talked to his nurse. He tried to get some info from her but she wasn't going to say. She did tell him that if she becomes unresponsive to bring her in. She said Makenzie should be fine until tomorrow and that they will be able to fix what is going on. That makes me feel a little better but still. I am impatient and I want to know NOW! Carson has soccer practice tonight, then American Idol Result show and I have volleyball. Hopefully that will make the night go fast. Thanks for listening to me. :) t

Quick Update

Just a quick update. They finally called today to set the MRI up. We are scheduled for tomorrow afternoon. Kenzie does not like getting MRI's but knows they are necessary. She does great. She does not need sleepy medicine anymore. It is great because we can walk right in and right back out. Before, when they would put her under she would have to wait over an hour in recovery until the medicine wore off. That is a long time to hold still. I don't think I could do it. :) PLease pray that all will be well and that the doctors will know what to do for her.

We LOVE you kenzie :)

Field Day

First I think this is a record. I have posted more than twice in a month and now on to my third. I forgot how fun it is to keep this going. I have to brag a little on my Carson. He is such a sweetheart. He is so concerned this year with good choices and bad choices. He really wants to choose the right. I really hope he hangs onto that as long as possible. He is just getting too grown up. His first field day was on March 13th. He had so much fun.

Carson is playing soccer again. The last time he played he was in la la land playing with the grass other than playing. This year he has just taken off. He LOVES to play. I catch him practicing around the house all the time. Today at church I had to talk to him because he was walking down the isle during the sacratment practicing his kick. So funny. On Saturday he scored his first goal and then ended up scoring 2 goals. Way to go CARSON!!!! I am sad to say that I was so busy being excited that I forgot to grab a picture of him making a goal. Maybe next time :)

Random thoughts

I had every intention of mailing out Christmas cards this year. I printed my pictures. I decided what I was going to do and had all the stuff. I was doing a top ten for the year. Family being number one and a few other highlights. Life got away from me and they turned into Valentines cards. Valentines Day snuck up on me and here it is APRIL and still no cards. So this is a Merry Christmas, Happy Valentines Day, Happy Easter and anything else you can think of. All online so everyone knows they were thought of. :) Here are the Pictures I had printed. They were taken by my super cute friend Erin (THANKS!). Maybe I will have better luck this year.

I can't believe school is almost out. Chris will be home for the summer. I can not wait. Since Kenzie will HOPEFULLY not be on Chemo we are going to have a FABULOUS summer. We are going to have fun here for the first part and the middle of summer we are going to the Orgeon coast with Chris's family. We are just happy to not have to worry about dr's and such.

Today was nice. Went to church and came home a little early with Kenzie. She had another bad headache. As long as she has Tylenol the headaches aren't too bad. We forgot to give her some before church and I think that is why it got so bad. I wish I was a little more upbeat in my last post but I just had to vent a little. We are going to insist on an MRI in the next couple of days. We need to know what is goint on. terri :

Please Pray

I am a terrible blogger. Chris has done the last few updates. I am hoping that people still look at her blog because we need prayers. Everything has been so great for Kenzie. She has really felt well. School is great. Playing a lot. Started piano lessons. Just fun girl stuff.
On Sunday she started with a really bad headache and felt like she was going to throw up. This has continued all week. Monday she actually threw up twice. Lots of bad headaches. I am worried that it might be a shunt issue. Last scan it showed a cyst that had enlarged. I am worried that it could be getting bigger. She had an appointment today for a port flush and I talked to her nurse about it. She did not seem as concerned as me but said we would get her a scan sooner rather than later. I really can't stand waiting. I want a scan NOW! If the headaches continue tomorrow I might just take her to the ER and insist that she get an MRI. Please pray for her that her body will fight. Please pray for healing. Please pray that the headaches will stop. Please pray for new scans to come back with good results. We have been blessed beyond measure. We know our Father in Heaven answers our prayers. Miracles still happen. We are so grateful for everyone. Hope your weekend is great! terri :)

Happy Birthday Makenzie & Student of the Month!!!!

Miss Makenzie hit double digits. She turned 10 years old on March 2nd. She celebrated all weekend. First, Grandpa Bill and Grandma Alice took her and her family to Peter Piper Pizza on Saturday. On Sunday, Grandma Betty and Grandpa Roy came over for dinner. Grandma Betty made some yummy chicken enchiladas and birthday cake. And, on Monday, Kenzie celebrated by skipping school and going to Peter Piper Pizza one more time with Grandma Betty and her brothers. For gifts, she got cash, a cool little figurine (to celebrate no more chemo), clothes, a purse, a Hannah Montana bag, and an alarm clock (I'm sure there is something I am forgetting).

Makenzie is also student of the month for March in her 4th grade class. She works hard and does well in school. We are proud of her. Unfortunately, she will have to miss the student of the month assembly because she will be flying to Aspen to go skiing for a week that Friday morning. But who wouldn't rather go skiing in Aspen.

As for health, she continues to do well. We are still concerned about the cyst in her tumor (see previous post). But all we can do is watch, wait, hope, and pray that the cysts will go down on their own. It is not causing her any problems right now and she continues to feel great and do whatever she wants to do.

Finally, An Update

I know, we need to do better about updating this... that will be a goal for us.

Makenzie has continued to do well. She finally, after 2 1/2 years, stopped weekly chemo back in early November. Her last treatment was on election day. Of course, it was great to be off chemo but at the same time we worried what might happen with the tumor. After about 3 months of no treatments, Makenzie got an MRI on February 5th. The news was mostly good but there was a problem. Her tumor (pilocytic astrocytoma) is made up of solid tumor cells and cysts with fluid in them. The solid tumor cells still have not grown. That is great news. Unfortunately, one of the cysts has more than doubled in size to about an inch in diameter. Right now, it is not causing Kenzie any symptoms or problems. Her team of doctors met to discuss the options. For right now, since the cyst is not causing any issues, we will just monitor it and hope it does not grow or shrinks on its own. If it begins to give her any problems, surgery or radiation may be options to try to shrink the cyst. Pressure in the brain stem is pressure in the brain stem, whether it is caused by solid tumor cells or fluid filled cysts... and can cause problems since the brain stem controlls vital functions... but cysts are less difficult to deal with than solid tumor cells. So... please, keep Makenzie in your prayers, pray that the cyst will go down on its own so we can avoid a surgery or radiation.

As far as what Kenzie has been up to the last few months:

Our family made our annual Rainbow Kids trip to Turf Paradise for breakfast, lunch, tours, and a horse race. The kids went to see Santa at the Phoenix Zoo (also Rainbow Kids).

Our family travelled to Logan, Utah for a very white Christmas. It snowed pretty much the entire time we were there. The girls shopped and played. The boys went ice fishing a couple times and went to a Utah State vs. Utah basketball game. The kids built ginger bread houses, played in the snow, and enjoyed the toys they got for Christmas.

Since Christmas, Kenzie has gone to see High School Musical on Ice. She really enjoys all the fun things she gets to do through the various organizations around the valley that provide fun activities for kids with cancer and other life threatening conditions and their families.

Makenzie is looking forward to a week of skiing in Aspen, Colorado over spring break through the Shining Star Foundation... lucky dog. She's going alone too, no family on this one... just a few other kids from Phoenix Children's Hospital and a nurse.

We'll get some pictures up soon of all the fun stuff the kids have been doing.