Happy Mothers Day

What a great day already! I have the best husband and kids ever :-) I feel so blessed to be the mother of my 3 beautiful children. Being a mom is my favorite thing ever. Theres nothing better than having my kids here with me, healthy and full of life! Grateful for my own mom and mother in law. Thinking of all the moms we have gotten to know these last couple years who don't have their children with them today. Happy Mothers Day!


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No cancer!!

Jaylie's scans were clear!! NED! NO CANCER for this girl!!! Huge relief again! She has another MRI in 3 months. Thank you for your prayers!


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Anniversary Week

Jaylie did great getting her MRI :) She woke up fast and happy! We get results on Tuesday. This last week was the 2nd anniversary of finding the tumor, having surgery and getting the news that it was cancer. So we have been trying to have fun as a family celebrating Jaylie and the fact she is here with us. So many families don't get that. We went to six flags, natural bridge caverns, camping, and out to eat a lot. This anniversary week last year we were on our make a wish trip at Disney world. We loved that we went to an amusement park a year later, it was fun and brought back a lot of good memories. Thank you guys for all your thoughts and prayers!!


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2 Years

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Two years ago today, after a long day of doctors appointments, we found out our precious five year old daughter had a huge tumor in her brain.  We were told she needed surgery right away and she was being admitted.  I went numb, felt so many different emotions and the rest of that night is a blur. How could my perfect, healthy little girl have a brain tumor? It was crazy. I never heard of people having brain tumors; let alone a 5 year old, MY 5 year old. I still remember the day so well, the day that our lives forever changed in an instant, the day I will remember forever.  

I honestly can not believe it has been 2 years. Kip and I were talking about it a couple days ago and it seems unreal.  How has it been 2 years?! We can remember it like it was yesterday.   Finding out about the tumor, her surgery, recovery and then finding out it was a rare, very aggressive form of cancer. Even writing about it makes me sick to my stomach. We try not to think of those first weeks, its just so hard. And it makes me feel so badly for other families going through a new diagnosis of cancer. Its something no one should have to go through, yet so many do. It is truly heartbreaking.

Looking back over the last two years though, the things we try and remember more so than anything else, are the many many blessings we were given (and still are given). It was amazing and overwhelming the amount of love and service we received from so many.  We were truly blessed and being carried and held up by servants and angels of our loving Heavenly Father. In that darkest, hardest time of our lives, there was so much love, service, peace, more so than Kip or I had ever felt in our lives. It was remarkable really, so many tender mercies, so many miracles. Heavenly Father knew what we needed to get through it.  We will forever remember and be grateful to everyone for their prayers, texts, messages, emails, hours of service, meals, watching kids, mowing the yard, donating money, giving gifts, cleaning, visiting us and so much more. It was so hard to accept all the help, it was SO hard, but it was just what we needed and really did help so much more than anyone will ever know.  We are so grateful.

Jaylie has done amazing well with all she has been through these last 2 years.  The fact that she was able to lay so still for her radiation treatments to her brain and spine where she was bolted onto the table with a mask, is a miracle by itself. I am still amazed that she did that. She did so well getting poked all the time and having millions of doctors appointments. She just found the good in every situation. She was always so positive and happy. She did really well through her chemo treatments and even though her body had no immune system, she never got sick, and no one else in the family did either. All of her MRI’s since after surgery have come back clear, no sign of cancer. She is doing so well now and most people seeing her now would never even know she had cancer and went though radiation and chemo. We can tell, a lot has changed, physically, emotionally and mentally, but she is doing much better than we expected. Huge miracle and blessing for sure.        

It has been a little over a year that Jaylie has been off treatment. She got her port out a month or so ago! So we only go to the clinic every 3 months now. Jaylie did great getting her port out and even went to her hip hop dance class the next day J  She is loving school and loves being with her friends at school. She is doing really well and loves to learn. The highlight of her week is Thursdays when she has her hip hop class and the weekends when she gets to spend time with Dad and the whole family. She loves crafts and any kind of art. She loves music and having dance parties. She is saving up her money to get her own ipod so she can put her music on it and be able to have her own apps on it. She loves going on walks and collecting thing outside. She still loves Hello Kitty and all her build a bears and stuffed animals.  Jaylie is the sweetest thing on Earth. She has such a big heart and always sees the good in people and life. 

She had an endocrine appointment last week. The radiation she had can cause damage in a lot of ways, one of which is to the pituitary gland and hypothalamus, both which regulate hormones and such. Her thyroid doesn’t work and her growth hormone levels are really low. She hasn’t grown much since being off treatment unfortunately. She is growing a tiny tiny bit but it is much slower than normal growth in kids her age. She has gone from being the tallest of all her friends before diagnosis, to being one of the shortest. It is weird for me to see, because she was always quite a bit taller than everyone else, boys included.  Her endocrinologist will probably put her on growth hormone next year. She has to be 2 years out from end of treatment before they will give it to her, so it will be a while. Hopefully she will grow a little on her own still.  The radiation she had is brutal.  There are other things we are seeing caused by the radiation and chemo, but all in all, she is doing amazing!!

She has an MRI a week from today, next Friday, May 3rd. Her 2 year from diagnosis MRI.  Its crazy. We didn’t know if she would even make it to this milestone. It is pretty huge and such a blessing. Scanxiety is more than setting in, I seem to get more anxious and nervous the further out she gets, which is odd and unexpected. Kip kind of feels the same way. We are just trying to have faith that all will work out and she will be ok. We will get results the Tuesday after her MRI, on May 7^th.   She will continue to have MRI’s every 3 months until November at least. Hopefully then, if all looks good, they will move her to every 6 months. Please pray for Jaylie, that her MRI will show no sign of cancer. We appreciate the prayers more than you know, they really work!                                                                        

 Jaylie and lil sis Breklyn on Easter Sunday

                                                          Day of surgery after it the port was taken out!

                       Picture of Jaylies port a week after surgery, she got an itchy rash, luckily it wasn't anything bad with her surgery.

Surgery and Amplify Austin

Jaylie's surgery went awesome! She is feeling pretty good except for a little upset stomach. We are sooo glad that port is out!! Yay! And she gets to go to school and dance tomorrow :)

 Thank you to everyone who participated in Amplify Austin yesterday! This is the email I got from Make A Wish today :)

If you haven’t heard the news, with YOUR help, Amplify Austin raised nearly $2.8 MILLION for local area nonprofits.  It’s an especially great day to be an Austinite!!

$11,077 was raised in just 24 hours for Make-A-Wish thanks to your help!  We are amazed & humbled by the support that you showed us and over 300 nonprofits in central Texas.

Your gift will have a lasting impact on the lives of the children we serve, as well as their families and communities.

One of many who felt this impact is 7 year old Jaylie from Cedar Park. Jaylie’s sign says it all, THANK YOU AUSTIN!

Port Surgery Today

Jaylie has surgery today to get her port removed. It will be nice to have it out so she won't have to get poked every month and have so many clinic appointments! After all she has been through and getting anesthesia so many times in her young life, you'd think I wouldn't be nervous, but I still am. I don't think that will ever go away. I love my Jaylie!


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Amplify Austin!

From 7pm tonight till 7pm tomorrow night, Austin is trying to raise money for the non profit organizations located here in Austin. Please consider donating to Make A Wish! They hold a special place in our hearts :)
https://amplifyaustin.s3.amazonaws.com/index.html#


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Make-A-Wish Radiothon

The 23rd Annual KASE 101 Make-A-Wish Radiothon presented by IBC Bank, benefiting Make-A-Wish Central & South Texas, will be held Friday, February 22, 2013 at Barton Creek Square Mall, 2901 South Capital of Texas Highway, Austin, TX 78746.

Tune in to hear the heart-warming stories of local wish kids told by doctors, volunteers, parents, and most importantly the wish children themselves.

Please make a donation to help grant that one special wish to an area child suffering from a life-threatening medical condition by donating online at www.kase101.com, www.cstx.wish.org, calling 331-9474 (WISH), or coming out to Barton Creek Mall and making a donation in person. Bid on the great auction items while you’re there. Donations will also be accepted at Austin area IBC Bank locations. Your support makes a difference in a child’s life.
For more information on the event, or to volunteer, contact Chad Wicks at chad@cstx.wish.org or call 329-9474 (WISH).

MRI Results/Update

I thought I had updated this blog with Jaylie's MRI results, but I guess I just did caring bridge and facebook. Her MRI showed no sign of cancer! NED! We are so relived and so thankful. I think I was more nervous for this scan for some reason. I get so nervous and get scanxiety for all of them. This was Jaylie's one year off treatment scan!, and it was a huge one. I have said on here before that the trend shows that for sPNET kids, if they recur it is usually within the first year off treatment. Most at the 6, 9, and 12 month off treatment scans. So we are so blessed and so thankful to be here at this point, one year out from treatment! It doesn't by any means mean she is in the clear or "in remission". Once she gets to 5 years from diagnosis, we will be able to say that, although it could still come back after that.  Scan time is so hard. Its like waiting for the one moment that we hear if our little girl will live or die. When a child with sPNET relapses, there is nothing more they can do, the cancer comes back too aggressive. So its terribly scary every time, can not even describe it. We are feeling good about things though and feel that the cancer will stay away for good.

 She woke up happy from her MRI, but she was so cold. She gets the chills after anesthesia, poor girl. We can't ever get her warm enough and I made it worse by pulling her blanket down to get the foam on the sticky window that covers her port :) The foam helps it pull off a lot easier and doesn't hurt her as bad. She has such sensitive skin. So here is a picture of her with the foam on, trying to stay warm. 

 Every time we go to clinic, I try and take a picture of Jaylie by the Hello Kitty. They started painting Hello Kitty's on the window about halfway through Jaylie's chemo treatments. She gets excited every time she sees it :)


I can't believe she has been off treatment for a whole year now. It is so weird. Sometimes it still seems like a dream, but we see the realities of childhood cancer everyday and are reminded of how horrible it is. My facebook this last week was full of heartbreak from so many young cancer warriors losing the battle. Everytime I go on my facebook (because now it is full of cancer pages and organizations) I am flooded with the realities of cancer and it breaks my heart. I am so thankful that Jaylie is in a good place. She is doing so well at school and keeping up with her classmates just perfectly. She started a hip hop dance class and absolutely loves it! It is the highlight of her week and she smiles so huge through the whole hour of dance class. She loves her friends and is really happy. We are gradually starting to see a little bit of cognitive effects from her treatment but they are minimal right now. Her balance is slowly getting better, but it is not even close to what it was before treatment. Her coordination is so much worse than it used to be also, but she doesn't seem to notice or remember how athletic she was before. She is happy being her, which is more than I can ask for. She is amazing and I love her so much. She celebrated her 7th birthday on February 6th. We had a party for her that weekend and she loved having her friends there. She had been thinking about and planning this party for over 6 months now :) Love her! I can't believe she is already 7. She was just over 5 when she was diagnosed.  Time is going so fast. I wish I could freeze it. I don't want them growing up so fast! Jaylie will be 8 next year and will get baptized. So crazy, she is really excited about it :)

Jaylie is getting surgery to get her port removed! It's scheduled for March 6th. It will be so nice not having it in. Her infection risk is cut way down (although she has never had an infection in it) and we won't have to go to the clinic every month to get it poked and flushed. We will only be going every 3 months for her MRIs and other tests and neuro onc appointments. They were going to do surgery to repair the "hole in her skull" from her last surgery but the doctors said it looked "funky" and had a lot of scar tissue (scar tissue and cancer both light up in the MRI and its hard to tell what is scar tissue and what is cancer). So they want to keep an eye on it before they do surgery again. They are pretty sure its just scar tissue and she will probably have that surgery in the summer time. In late April, it will be 2 years from diagnosis.  Usually they would move her to every 6 month MRIs if all is clear ta the 2 year mark, but they are keeping it at every 3 months for a little while longer to watch the skull more closely.

About a month ago, Make A Wish invited Jaylie and I to go and talk about her Make A Wish experience with the radio station here, Kase 101. They recorded us and are playing it on the radio for advertisement for a Make A Wish radiothon, trying to raise money to help carry out wishes for the kids with life threatening illnesses, like Jaylie. Make A Wish was amazing to us so anytime we can help, we love to. Jaylie was sooo excited to do it and it was really neat being there. A lot of the Austin radio stations record there, so it was fun seeing the studio. Jaylie did great and they seemed to really love her :) The radiothon is this Friday at Barton Creek Mall. Its all day long, so tune into Kase 101 on Friday! Jaylie will be live on the radio sometime around 4-5 pm. She is really excited! Click here for more information about the radiothon. You can donate by phone or online or at the mall on Friday. Please share this link with your friends and family to help get the word out and help very deserving kids in our area!!

MRI tomorrow

Fun Super Bowl night! Jaylie has her brain MRI in the morning. We get the results on Tuesday. Please keep her in your prayers that there will be no sign of cancer!


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