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.