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.

Still Doing Well

Not much has changed. Makenzie continues to do well. She is enjoying school this year and got a good progress report... all A's and one B in math. Her counts have held up well the past 4-5 weeks and she has been able to receive treatment. And we are grateful that her tumor did not grow during the month she was unable to receive treatment. Grandpa Bill and Grandma Alice are in town from Logan, Utah for about 5 weeks so Makenzie and her brothers are excited that they will get to see them a lot for awhile. We'll add some new pictures soon.

Good MRI News

The MRI results were good... there has still been no tumor growth and her shunt is functioning just fine. She did have some sinus issues which probably are the reason for her headaches and balance issues. We will put her on some allergy medication and hopefully that will help her feel better. We feel blessed and grateful that she continues to do well. Please, continue to keep her in your prayers.

D-Backs Game and the Science Center

Kenzie and her brothers have been busy. Kenzie and Carson are both enjoying school. In the past couple of weeks they have been to a Diamondbacks game with other kids from Phoenix Children's Hospital and the Arizona Science Center with Hope Kids. The baseball game was sponsored by AFLAC. This is something AFLAC has been doing each year for a few years for kids who are patients at the Center for Cancer and Blood Disorders at Phoenix Children's Hospital. Before the game, they fed the kids and their families free dinner at Sliders across from the stadium. At the Arizona Science Center the kids were able to play with many of the hands-on exhibits and see the Chronicles of Narnia exhibit. They had fun.

Kenzie got another MRI today. It was a little sooner this time, we didn't wait the standard 3 months since the last one. She has been having a few more headaches, tripping a little more, and she missed 3 weeks of chemo a month ago because of low blood counts. We should know the results in a couple of days.

Camp Rainbow and Back to School

Kenzie is back from Camp. She had a great time. She said the weather was perfect. She caught 3 fish, went canoeing, rode horses, went to fitness, tried the zip line, did archery, camped out in the meadow, and made lots of new friends. She is also back in school and liking it so far. She really likes her new teacher. She is the 4th grade this year.

Her counts were great today (7900 and they only need to be 700 to get chemo) so the time off chemo helped her bone marrow recover well. She was able to receive treatment today. Hopefully this 4 week delay in treatment was just a little bump in the road and her counts will hold up and allow her to continue her chemo without interruptions. Please pray for that to happen for her.

Carson also started school. He is a big kindergartner. He is very excited and proud of himself. He marched right in on day one, sat down, and got down to business.

No Treatment for A While

Makenzie's counts have been too low the past two Tuesdays to receive Chemo. She will be gone at Camp next week... so she will have had 3 missed treatments. She is either fighting off a virus or 2.5 years worth of chemo are finally starting to take their toll on her bone marrow. She had her counts checked again today and they appear to be on their way back up. Hopefully, after camp, her counts will be up and she will be able to resume weekly treatments. She has done so well for so long we had gotten a bit spoiled. Most patients do have some delays in their treatments because of low counts. Low counts basically just means she does not have enough white blood cells to fight off disease... so she can't have more chemo until they recover enough. She is excited for camp... she loves camp. Pray for her counts to go back up and her immune system to be strong. We will post pics and details of camp later.

Makenzie's Glasses and New HairDo

Here's Makenzie in her new dress with her new hairdo and her new glasses. She goes to Camp for a week in a week. She is excited and counting down the days. Then, after camp, it is back to school. She is not too excited about that but hopefully she has a good school year this year. She actually missed a treatment last week because her counts were too low. That is the first time that has happened in probably 2 years. We will try again next week.

July MRI and Other News

Makenzie had her latest MRI on July 1st. MRIs are so much easier now that she stays awake for them. Her doctor was out of town at a national brain tumor conference so we had to wait a while to find out the results. Good news.... still no growth. This chemo is keeping the tumor in check and not making Makenzie sick, her quality of life is great. She will continue chemo at least until January now. As long as she continues to handle this chemo well with little toxicity and it controls the tumor... her doctor says she could continue on it for a while. We found out there are kids who have gone 3-4 years. At the minimum, we are buying time while more treatment options become available.

I think we have moved since we last updated this blog also... just a few miles north of where we were. We have been busy the past week or so ripping up tile and laying down hardwood floors. Makenzie has been a big help keeping the boys occupied while mom and dad work. Soon after we moved our ward split... we are in the new West Wing Ward and Chris is still ward clerk. I guess almost 7 years wasn't enough yet! Terri will be the Webelos leader.

Makenzie is enjoying her summer. She's been swimming a lot, going to the summer movies, been on vacation to Utah to visit her grandma, grandpa, aunt, uncle, and cousins, spent the night at the Phoenix Zoo with dad and Carson, and been to a Diamondbacks game. She's been sleeping in most days but she only has about 5 more weeks to do that. She also had to get glasses. She wasn't seeing as well as she should... but that is probably just bad genes from dad, although the tumor could have something to do with it. We did learn from her eye exams that she has suffered some nerve damage from the hydrocephalus years ago that affects her peripheral vision, she doesn't have much. But she still functions very well, I guess she just won't be a fighter pilot now.

Carson is excited about being a kindergartner this fall. He's been getting school clothes and supplies. Brayden is just staying busy playing and keeping everyone else busy watching him. He is a funny (sometimes evil) little boy. He told us in church yesterday he wanted to put us all in the microwave and cook us.

Keep Makenzie in your prayers... it works. I don't think most kids do as well as Makenzie has done. But she still has a long road ahead.

The Latest MRI & 6 More Months of Chemo

Makenzie had another MRI on February 26th. Good news... there is still no growth in the tumor. We thought maybe Dr. Etzl would stop chemo after the MRI, it has been 2 years total and 1 1/2 years on the current chemo regimen. But... after consulting with all the other doctors on the brain tumor team he decided that we will continue chemo another 6 months until August. It would have been nice to be done... but we are hopeful the continued chemo will be able to shrink her tumor. Many kids on this protocol go 2 years. And Makenzie has handled this chemo very well and it seems to be controlling the tumor. Please, keep her in your prayers!