Our New Normal

I have been needing to post about Jaylie for a while now and am just getting to it. It has been so nice not to have chemo or appointments all the time. We are enjoying our time together as a family and are trying to gradually switch out of our 10 month "crisis" mode to the next stage, "recovery". Life will never be the same as it was a year ago before Jaylie's diagnosis but we are enjoying it. We have been warned by fellow parents and oncologists that the recovery is more difficult than one would think. We still have fears as we tread again in new waters. We are adjusting to another "new normal". It has been nice seeing Jaylie gradually get her strength back and feel better! No more throw up, bone pain, sickness, mouth sores etc.  It is nice adjusting to home life instead of hospital life! Our lives will still contain many unknown turns and hills but we will adjust to those as they come and just enjoy our Jaylie.  We are going to go back to church probably next week (after about 9 months of not going-we played it safe since there are usually lots of germs and sick kids at church) and Jaylie will start Kindergarten after spring break. She is sooo excited!! Kip and I are now too! I still have my worries, but she needs to be there and wants to be there. It will be nice to get into a schedule too. We have been venturing out a little more these last few weeks, but are still cautious about germs and use sanitizer and wash hands a lot. Her immune system will still be lower than normal for a while so we are careful. But it has been SO nice not to have to sanitize my house constantly or wash sheets every day or freak out about her being close to people. We have been able to relax a little, and it feels so good.

Her oncologist has started testing for late effects from her high dose cranial / spinal radiation and chemo treatments. They monitor her hormone levels and other blood levels because the pituitary gland and the thyroid are often damaged during full brain radiation. They also monitor her thinking and learning. Jaylie had psych testing and evaluation over the last couple weeks.  All of the kids that get chemo in the clinic get tested. The radiation and chemo can effect a lot of areas and the way her mind works is a big one.  She will get tested next year around this time too and they will compare the results from that one with this years test to see if there have been changes and if she needs help. They use these tests to see if and how the kids need help in school. I think all brain tumor kids have a 504 plan at school that helps for them to reach their full potential. We have a meeting at Jaylies school with me, her school teacher, the counselor, nurse, and one of the psych doctors, and we will talk about Jaylie's needs and any special needs she has.  Anyways, she went twice for the testing for 2 1/2 hours each time. She loved it! She said it was fun and she got a sticker and a little prize. She did really well, we don't have the full report yet, it usually takes a while, but they called and gave me a quick report.  She tested average or above average in everything. The only thing they found was that she loses attention if something is boring and she stops participating in whatever that boring activity or test is.  We are so blessed she is doing so well and did so well all through surgery and treatments. It really is amazing. Hopefully she will continue to do well and she won't ever need more help than she does now, but it is nice to know that there are programs in place to help if she does end up needing it in the future. The late effects can occur anywhere from 6 months to 5 years after radiation so its kind of a waiting game. We have faith and hope though and know that anything is possible with our Heavenly Father.  If he wants her to have no late effects, we know He can do that and if that is not the plan, we know He will help guide her and us along the way..

Jaylie has an appointment tomorrow to check her blood counts and they are giving her an End of Treatment Party!! She is so excited and we are too! The whole family is going, along with my awesome Mom who went to just about every appointment of Jaylies with me. She is awesome! Anyways, they have little end of treatment parties for the kids when they finish up treatment. She will get a Hello Kitty cake too! After this appointment, she will only go once a month for a nurse visit to put heparin in her port (she has to get this liquid in it at least once a month the whole time her port is still in her body. She will get the port out at the end of the summer probably). And of course she will have an MRI every 3 months still. It will quite a change for us because we are used to going there at least once a week. I know Jaylie will miss her nurses and doctors, but will love meeting new friends at school.  I really can't believe we are done with the treatment phase. I feel like we will never be all the way done, because there will always be the worry of the cancer coming back and having late effects, but she is in a really really good place. To not have any sign of cancer or have effects from surgery or chemo is huge and we are so thankful.

I have been meaning to write a little about her MRI and her audiogram she had a couple weeks ago.  She always loves getting audiograms because she gets to see Liz, the lady who loves cats that always does the testing. Jaylie drew her another picture and she has them all hanging on her wall. I knew that her hearing would probably be worse this time around because she had gotten all her chemo and it gets worse with every dose of chemo. Luckily it was the last round and it won't change much more. Her high frequency hearing has declined quite a bit. She has a lot of loss but its not that big of a deal, the don't even test the high frequencies in normal testing, just in chemo kids. She only had one normal frequency pitch that she lost some hearing on and it was only in one of her ears. She tested normal on that frequency in the other ear. And it was on the highest frequency tested, so it really shouldn't effect her in everyday life, and she probably won't even notice. We are so grateful that it is so minor. We sure do have a lot to be grateful for.

She did so well with her MRI too. They usually have to put an IV in her arm to sedate her but she had gotten her port accessed the day before so we just kept it accessed and they were able to sedate her through that, so she didn't have any pokes or anything. She was super happy about that. It was a long week of waiting for the results, but it seems that Kip and I are always comforted and feel at peace every time we wait for the MRI results. Heavenly Father always knows what we need and helps us during the hard times. We couldn't be happier that the results came back good. There was no sign of any cancer and no suspicsious spots. She has scar tissue where the tumor was but that is normal and everything looked good. We are so thankful. I wish it was all over now, that we didn't have to keep getting scans and wondering or worrying if it will come back or not. We are so happy to be done with this phase, but it won't ever feel like its over. Please continue to keep praying for Jaylie, that the cancer won't ever come back and that she will have little to no side effects from radiation.

There is a little boy Jaxon, around Jaylie's age that lives in San Antonio that has the same diagnosis as Jaylie, sPNET. They were diagnosed weeks apart and he finished up treatment in December. Their diagnosis is so rare, there are not many kids with it, and for them to live in Texas was great. Jaxon's mom and I emailed back and forth a couple times and we found out right before we got Jaylie's MRI results that he had relapsed. They found two new tumors, both the size of the original tumor in his brain. I feel for his parents greatly, that is my worst fear come true, and they are having to deal with it. I just feel sick for them. We always pray for a cure and we know God can do anything. Please keep Jaxon and his family in your prayers. His website is:

www.caringbridge.org/visit/jaxond

I will update again soon with pictures, there are so many I need to add!

Jaylie's Birthday!!

I can't believe my little girl is 6 years old now! Her life has flown by! The past 6 years have been the best of my life. I am married to the best guy ever and have the 3 best kids in the whole world! I am so lucky to have all of them in my life. This last year of Jaylie's life has really been an eye opener for me. It has definitely been the hardest year for me and for her but we have both grown and learned so much.  I have learned so much from my little Jaylie, so much more than I ever thought was possible to learn from a little child. Children are so special, I understand now more than ever what Jesus meant when he taught us to look to children as an example. He said "Except ye be converted, and become as little children, ye shall not enter into the kingdom of heaven. Whosoever therefore shall humble himself as this little child, the same is greatest in the kingdom of heaven" (Matthew 18:3-4). I am so grateful for Jaylie and how amazing she has been this last year and for how much she has taught me and continues to teach me. I am honored to be her mom, she teaches me so much about love, compassion, faith and hope.  I love more, play more, care more, serve more, laugh more, hug more, pray more, and hope more (I could go on and on). I have really changed for the better and I think Jaylie has too. I was looking back at pictures from her 5th birthday party and can't believe how much she has changed. She seemed so young then and now she seems so grown up in a lot of ways. She looks totally different, obviously. I miss her little chubby cheeks and beautiful long blonde hair sometimes, but I love Jaylie how she is right now. She is beautiful inside and out! She is excited to get hair again but I keep telling her how much I will miss her being bald and smooth.  I love this little girl so much! She is an amazing, caring, loving, serving, sweet, smart, determined little girl and is the best fighter ever!

Jaylie lost her two bottom front teeth the day after her birthday! They had been loose for a while now and the permanent teeth even came through behind them but they would not fall out. So Kip numbed them and pulled on them and they came out so easily. Jaylie was so brave! She said it didn't hurt at all. She got a visit from the tooth fairy that night, it was a special day!

Some fun things about Jaylie:

She is the best big sister ever
She is so caring and loving, esp when someone is hurt :)
She is the best cancer fighter!
She loves writing in her journal
She loves babies and is so sweet with them
She loves crafts
She loves Hot chocolate
She loves reading scriptures as a family
She loves her scooter
She loves playing soccer
She loves dancing and having dance lessons
She loves her birthday
She loves being with friends
She loves giving presents and picking out the bag and tissue paper herself
She loves making people cards
She loves Chicken Corn Soup from a Chinese restaurant down the road
She loves books and barbies
She loves stuffed animals
She loves Hello Kitty and Tweety
Her favorite book is "I Broke my Trunk"
Her favorite song is Taylor Swifts "Love Story"
Her favorite colors are pink and purple
Her favorite drink is Hot Chocolate

I was going through one of her journals today and the page said to "List 10 things that make me smile". Love it!  This is what she said:

1. Mom and Dad
2. Sister and Brother
3. My birthday
4. Crepes
5. Bread
6. Costco
7. Chili's
8. "I Feel My Saviors Love" church song
9. Barbies
10. Penguino (her stuffed penguin)

Here are some pictures from her birthday weekend. Her Grandma from Utah was here for her party and her actual birthday and Jaylie thought that was really special. All three of the kids love her and get sooo excited everytime she comes! They are lucky to have such good grandparents!

 These are from making "aquariums" with "sharks" in it. Their grandma always has fun things to do with the kids and they loved this one! Jaylie was eating the jello and trying to get all of the shark gummies out :) She made a mess!

 Opening her presents from us on her actual birthday. She got some books and roller skates she had been wanting.

We went to Gatti Land later that day for her birthday too. I was worried about the germs, but we took lots of precautions and went because she had been wanting to go for so long! These next pictures are from Gatti Land.

 Breklyn

 Jaylie

Crew

This kid is so funny, he is always making the funniest faces :) This little carousel ride was Crew's favorite!

 The girls with Grandma

 Having a cupcake on her actual birthday :)

 Breklyn and Jaylie making mouse cookies with Grandma. They love baking with her!

Jaylie's Birthday Party

Jaylie had been planning her party for months and decided on a Hello Kitty party out at my parents house. They live kind of out in the country on some acreage and the kids love it out there. She invited 14 of her friends and I think 11 came. She was so excited! Her Grandma from Utah flew down and was here for her birthday too.  She had so much fun seeing all her friends! She was very particular about what she wanted at her party. She wanted pizza, strawberries, lemonade, water, and cupcakes and nothing more. The cupcakes had to be white cake with chocolate gnash inside with pink cream cheese frosting :) I let her choose everything she wanted. We got online together and she chose the decorations and everything. I tried to make it exactly how she wanted it. When the kids all got there we ate, played a Hello Kitty game, did a pinata, opened presents, had cupcakes, played outside in the tree house, barn and trampline and did tractor rides. I think all the kids had fun and Jaylie had the best time! Here are some pictures. Oh and Jaylie requested that if the girls had Hello Kitty attire that they wear it :-)

Here are some of the invitations she made. She wanted to do them herself instead of buy them :)

Here are some from the party:

 Eating pizza and strawberries

 Jaylie and Shelly

Hello Kitty game. They tried to get the bow on her head :)

Pinata

 Presents

 Jaylie got so many great presents! She loved them all.  Nana and Papa (my parents) got her a ticket to see Wicked with us. She loves plays and was so excited!

Sparkler candles!

Pink hello kitty cupcakes :)

All the girls eating their cupcakes

Crew loving his

 Playing outside. It was pretty cold that day but they had fun anyways.

 Checking out the horse

 On the tractor ride my Dad took the kids on

 Jaylie loves this hat! It's her favorite and it keeps her so warm, she insisted on wearing it!

  Crew loves this dog Koda so much! Jaylie loves him too and loved him like this when she was little. Breklyn on the other hand is totally scared of him :)

 

Crew did not know what to think of this tire swing, he made the funniest faces the whole time.

  Papa and Crew. You can tell by this picture that Crew gets hurt a lot, he is a crazy little boy!!
 

 
 Jaylie and Aubrey. Aubrey got Jaylie the same black and silver hello kitty shirt she is wearing, but it was the only one that fit Breklyn so we had Breklyn wear it for the party. They are such cute friends.

 Jaylie picked these flowers for me out in the fields at her party, it was so sweet!!

  At the end of the party, Kindra (my lil sis) took some pics with our camera. I thought this was a funny one!