5k Preparations Continued

 

 

These were taken the night before the 5k. Thank you everyone who help set up! I know it must have been a ton of work, the 5k was amazing.

 Setting up the stage

 

Crew's Mohawk

Floyd's 99 Barbershop started their first annual Hawktober event. On Mondays in October, you can go in and get a free mohawk and then donate to support brain cancer. My friend heard about this event on the news (see link below)and told me she was going to get her sons hair cut and was wondering if I wanted to bring Crew along.  So I did! Crew didn't exactly love getting his hair cut. He cried a lot but the hair stylist was great with him. I used some baby apps on my phone to keep him good for some of it.  He wouldn't stop crying when we were done so the girls there gave him a sucker and he stopped pretty fast. That's a big treat for him!

http://www.kxan.com/dpp/health/brain-cancer-survivors-celebrate-hawktober

Trying the phone to make him good:)

I dont know why I'm smiling, poor little guy. 

The two cuties with mohawks!

Dance Lessons

My good friend Michelle (the same one that told me about the Hawktober event) is a dance instructor. She has offered to come over to our house and teach Jaylie and Breklyn dance since they can't be in a class or anything. She is sooo good and the girls love it. She usually comes once a week and the girls look forward to it all week. She is so nice to take her time out to do this for us. Love you Michelle!

Blood Transfusion

Jaylie had an appointment yesterday to get a blood transfusion. We expected her platelets were low enough and thought her red blood cells would be too and they both were so she ended up getting platelets and blood. This was her first time getting platelets before. They were yellow which was a surprise to me. Jair again didn't seem to mind. She is usually fine as long as they give everything to her through her tubies which go into her port. She hates taking things by mouth or iv's in her arms etc. She is actually really good at taking her medicines now. She rarely complains about it which is nice. We were gone all day from 8:45 in the morning till almost 7 at night. It was a long day but she had fun. Her ANC was zero, which means she has no immune system so we have to be really careful. Hopefully it will go up in a few days. I will be doing lots of cleaning and sanitizing and laundry. Jaylie is feeling really good for having counts that low. Usually you would feel really tired and just crummy. She has had pretty good energy but tires early. She did wake up last night complaining about her legs hurting. They have hurt every round and that is how I usually tell she is at her lowest point. She took a bath in the middle of the night, that always seems to help. She took another one when she woke up this morning. She is doing good though considering. I'm so proud of how strong she is mentally. I love her so much.

Anyways, before she got hooked up we visited Briggs in the picu. Jaylie is so cute with him. Then we did crafts, games, Nintendo DS, and school work. We stayed busy. My mom and I took turns visiting Ryan and Briggs. Then we stopped by there on our way out and saw all 3 of them. Briggs is doing pretty good at the moment. His heart is just not working how it should still. They will have to do a balloon procedure to buy him more time. They will probably do it in 3-4 weeks. Then when he's  around 6-8 months he will have to have another heart surgery, this time open heart in the middle of his chest to correct the artery and hole. So they will be in the hospital for a while unfortunately. 

Jaylie has an MRI on Halloween day, which is this coming up Monday. So we have less than a week. We have to get there extremely early that day, but I guess that's good so we can be done. There's a Halloween party at the cancer clinic that day that we will go to and then well let them go trick or treating, so it should be a good day. Jaylie hates getting MRI's because of having to get an iv. They usually aren't comfortable using her port bc if risk of infection so they just do an iv. Jaylie is not happy when she wakes up and sees it. Hopefully she will do well. We have an appointment the following Thursday, the 3rd to go over the results. I am already nervous. Please keep all of us in your prayers, we appreciate it greatly.

Doing school work during her blood transfusion

Playing the game Guess Who with Nana. Its her favorite game to play.

Jaylie with Nana at her appointment on Thursday

Jaylie is so sweet and has really been into making everyone cards and presents lately. She makes bead necklaces and cards and then will get a gift bag and matching tissue paper and put it all together. She loves giving it to people! She made one for her nurse that she loves, her teacher and her Kindergarten teacher who she has never met. She made these two cards and leaves for her Oncologist and Nurse Practitioner. I thought they were pretty cute, she comes up with the wording all on her own.

These next ones are kinda random.

The girls with Hello Kitty suckers Dad got for them when he got home from work one night.

She has been into drawing people and putting their inital by them. This is our family. I love how she draws herself without hair most of the time.

Family movie night. The girls loved staying up to watch a movie :)

 Crew playing on Jaylie's top bunk with her.

 It was night time so its not a great picture, but I love both of their faces here.

Playing on the top bunk wearing silly hats.

 Jaylie and her 3 Hello Kitty's from build a bear. She loves all her stuffed animals but these are her fav! Her Nana bought her the pink one a month or so ago and then the orange one a couple weeks ago. The orange one is for Halloween:)

Crew just went up to Breklyn and gave her a big hug for like over 10 seconds so I hurried and snapped a picture. They are too cute.

Appointment Today

We came home Sunday morning and it was great being together at home with all the kids. It's so weird being without them all day every day. Jaylie sure misses them too. Jaylie felt good Saturday and Sunday she was tired. Monday we went back to the clinic and got the nulasta shot. Jaylie did awesome and was sooo brave. She can talk herself into anything. She talks herself into thinking it doesn't hurt and it will be fine. She's amazing. She was tired all that morning too and on the way home started feeling really sick . It was so sad and I felt so bad for her. When we got home she just wanted me to hold her. She did not want me doing anything else. I put her down for a nap and she slept for about 2 hours and woke up just fine with a lot of energy. She has been good this week just a little tired but not bad. She had an appointment today to do lab work and get more vincristine chemo. It was a pretty fast appointment. Her counts were good enough to not need a blood transfusion but her platelets are low and hemoglobin is low so she will need a transfusion eventually. Just not today. We have an appointment for Monday to do labs and most likely she will get a transfusion then. Jaylie loves and misses Breklyn and Crew when we go to appointments. Today on the way home she was thinking about Crew and said "ah,I wish I could see his cute little face. I can't stop thinking about him hes so cute". And she said it in a cute voice, it melted my heart. She is so sweet and is the best big sister. Weve been doing a lot of school work this week. She LOVES it! I am so thankful for get teacher Trudy. She comes again tomorrow to the house. Jaylie always gets so excited. She is doing an awesome job reading. She reads pretty well now and knows a lot of words. It's so fun to see and work with her on it. Briggs is still in the piku but is doing better. Hes off the oxygen now and is breathing well. They are just trying to get him to drink from a bottle. He has had the feeding tube since surgery. We are hoping he will be able to eat well and hopefully they can go home soon. Thank you for the continued prayers. We sure need them. There are still ups and downs, good days and bad days. This week I have felt worn out and am so sick of constantly cleaning and sanitizing. I could go on but I know it's worth it and it won't last forever. Thank you for your prayers again, we appreciate it more than you know.

Home Tomorrow

We have been here in the hospital since Thursday morning. It has gone pretty well and Jaylie has been feeling pretty good for the most part. Jaylie is so funny and is such a good example to me. Thursday morning we woke up early bc we had to be at the clinic at 8. Jaylie woke up and said she was excited, Kip asked about what and she said "I'm excited I get to go stay in the hospital for a few days!" I was surprised and kinda relieved that she wanted to go, it makes it so much easier on me and Kip. She has such an amazing attitude. She had her hearing test thursday morning and it went really well. No hearing loss or change since last time which is huge. A lot of times they have to lower the doseage of the chemos to prevent more hearing loss. Hopefully it will be good news every time she gets one.

Jaylie got 8 hours of cisplatin (chemo) thursday night and was up peeing every 2 hours. Luckily the nurses have been taking her so I didn't have to get up every time. Jaylie woke up Friday morning feeling sick to her stomach.  She said to me, "I hardly slept at all last night". She was tired and feeling sick all day that day. She threw up once that morning right after she ate breakfast and then didn't really eat until dinner. She had two tiny bites of dinner and then threw up again. She doesn't complain much and doesn't seem to be too bothered by throwing up. The zofran is helping with her nausea a little. She doesn't complain unless I ask her how she is feeling. We went to the pet therapy dog fashion show on Friday which she loved!! The child life specialists put it on. They are so wonderful. They also had some of the UT football team come and visit in one of the playrooms here at the hospital. It was neat. We got lots of pictures of both events. Jaylie was worn out by the end. She got cyclophosphomide (chemo) Friday night. It ran for an hour. She did good Friday night and Kip and I both stayed here and slept pretty good. Jaylie didn't really eat anything all day today. She had a few crackers this morning and that is about it. The doctors say the chemo makes them have no appetite and say its ok if they don't eat. They gave her a drug called amend that helps with the nausea and she has felt pretty good today. She hasn't thrown up today at all. My Dad and Kindra brought Breklyn and Crew up. They have had them this weekend and it was good to see them.  We played in the playroom and hung out in Jaylie's room. It is a little crazy up here when all the kids are here but it was fun. I miss them, they are so darn cute. Its been nice having Kip up here, we are staying the night again tonight together with Jaylie. She likes when both of us stay here with her. She was so excited for Breklyn and Crew to come. They came Friday night for about a half hour too. Thank you to everyone who helped with them Thursday and Friday! Jaylie is asleep now,  she got another hour of cyclophosphomide tonight. I am exhausted and so ready for bed.


It's so sad seeing all the kids here and wondering what their story is or getting to know them and finding out their story.  Its hard and heartbreaking seeing other kids go through this stuff too. There was a teenage girl who had her radiation treatments right before Jaylie had hers so we would see her everyday Monday through Friday for a few weeks. Her mom and younger sibblings would always go too and they were all so nice. She had bone cancer in her leg. We saw her on our way in to the clinic on Thursday and my heart broke. Her leg had been amputated. I went and talked with her for a minute and she had a smile on her face the whole time. I told her we were praying for her etc and then walked away and just started balling. It was hard to make it stop. I hurt for her and it just makes this all so real. It makes me really think seeing stuff like that and knowing what cancer can do to you. I usually try not to really think about what is going on because it is too hard. I just go through the motions and don't really think about what is happening, but when I do its hard to stop crying. I am glad I am not at St Judes for treatment bc I would proably have met a lot more kids going through this and its so hard seeing them go through it too.


Anyways, Baby Briggs is hanging in there. They are not getting out of here anytime soon. He keeps having episodes where he stops breathing and it's super scary. He has an infection too but is on antibiotics for it. They are probably going to do a scope down his throat to see if they can see a problem. The doctors and nurses don't know why he is having the breathing issues so its been very frustrating for Ryan and Brandilyn to not know what is wrong with him.  I feel so bad for them, they are worn out from the ups and downs. I feel bad for my parents too having to deal with Jaylies situation and little Briggs. Please pray for him and for the whole family if you will.  Prayers work, I know that!


I have a lot of pics to put up but the Internet isn't working too well. Hopefully I'll be able to do it soon. And the 5k post will be coming soon, hopefully:) It's long!

 Painting in the play room

 Pinkie (kitty's name) with her new hat that the nurse got her. This super nice nurse got Jaylie two knitted hats, this little knitted blanket and this one for her kitty.

The face I got when I told her to smile:) Love this cutie!

I had a ton more pictures of the dog show and Jaylie with the UT football players but my phone died for good the day after we got home and I hadn't synched it. I'm sad I lost all those great pictures.

Chemo Round 3 Tomorrow

We go in tomorrow morning for Jaylie's next round of chemo. This is her third, so just 3 more after this one. She has an audiogram again begire we go in to the clinic. Im always nervous that she will have hearing loss. This last month went by so fast, it feels like we were just there. It's been a busy day of cleaning, packing, and figuring out who's watching the two little ones. I'm so thankful for people being so willing to help. It's so hard being away from the kids but I'm so glad I don't have to worry about them. My friend Kendyll is so amazing as is pretty much Breklyn and Crew's nanny. She has watched them every Thursday for a couple months now while Jaylie has her appointments. She watches them Thursday's when were in the hospital too. She is such a lifesaver to me knowing I can count on her. The kids LOVE her too, so of course that helps:) She is just one of the many angels we have in our lives right now. We are so thankful for all the help we receive from everyone. Jaylie has been doing great lately and seems ok with having to go back into the hospital. We will be there till Sunday if all goes well. She loves visitors, so let me know if you want to come. Baby Briggs (my nephew) is still at Dell Childrens in the icu. He is doing better but they might still be there a while. His kidneys are working great now and he doesn't have the breathing tube breathing for him but does have a little oxygen helping him breathe better. They have to stay until he can eat and tolerate food and until his breathing gets better. He is so cute and it's nice to see him not hooked up to so much stuff. I'm sure we will be seeing them a lot this weekend with both of us in there. Who would have ever thought. Kip and I were walking in the halls of the hospital going to visit them and we were talking about how crazy it is that most people never have to step foot in a childrens hospital and that we have been there sooo much over the last 5 months. I can't believe it's been that long since Jaylie's diagnosis. Sometimes it's hard to remember life before cancer. It feels like we've been dealing with it forever. I'm so grateful that she has done so well, we have truely been blessed. Prayers do work. Thanks! Please keep them coming.

Chili's

Chili's restaurant supports childhood cancer during the month of September. I love that they raise awareness for childhood cancer. They have these shirts for sale too. We go to Chili's a lot because it is Jaylie's favorite. There is a guy who works at the Chili's by Lakeline mall who is an awesome artist, his name is Justin. He did some designs on some of the shirts and had them on display. I was planning on getting Jaylie a shirt anyways but when my Mom and I saw these we loved them. So we asked if he could do a Hello Kitty design for her. This picture below was taken the day we went and picked the shirt up. This Chili's location is always to nice to us and they actually gave us the shirt. We are so thankful to them and to Justin for doing this for us! One of the managers actually called and left a message the other day asking how Jaylie was. So nice! Thank you Chili's at Lakeline!

 Jaylie and Justin

 Posing for the camera :)

 Justin is an amazing artist!

 Her counts were really low when we took these pictures. You can tell in her face. She is pale and has big bags under her eyes. She is a trooper though, she hardly ever complains.

 Love the back too

Update

It's a hard time right now. My little nephew Briggs had heart surgery yesterday at 11 days old and it didn't go as well as the doctors thought it would. The surgeon performed the aorta repair 3 times and he still wasn't satisfied with the results. The blood flow still is not what it should be. He might need another surgery after he recovers from this one. He is stable right now but they are watching him very closely. Please keep all of them in your prayers through this difficult time. It is so hard seeing your child go through surgery and being in the piku. Kip and I are heartbroken for them and it has been hard because all our memories that we have tried to forget from Jaylie have come flooding back. Jaylie on the other hand is doing amazing. She has been feeling great and playing great. She goes in tomorrow for her labs and to meet with the oncologist. I am guessing her counts will be pretty good. Chemo is supposed to start again next week, it has gone by so fast this time. Thank you for all the love and support from everyone. We feel it and couldn't be more grateful.

Baby Briggs

My brother and his wife just had a baby a week ago, I put a picture up last week when he was 9 hours old and I visited him. They found out he has a coarctation in his heart and has to have surgery tomorrow to repair it. They have been at the hospital with him since Thursday, so it will be a long hospital stay. Kip and I had a really hard time when we found out. Our hearts broke for them as we know what it's like. I hate that anyone has to suffer and go through hard things but it being my brother was horrible. We found out on Thursday and we both had a hard day. It brought back so many memories of when we found out about Jaylie needing brain surgery. It was just so recent and raw that it was hard not to have all those feelings come back that we had when Jaylie had surgery and we were in the same hospital. It's a hard time and we are so sad they have to go through it. I feel for all parents in similar situations. There is suffering all over the world in so many forms and I feel like i have so much more understanding and compassion now. Thank goodness for our loving Heavenly Father who helps us through hard times and thank goodness for prayer. Please pray for Ryan, Brandilyn and baby Briggs especially tomorrow (Tuesday). Jaylie has been doing pretty well. It seems that she is feeling better everyday as her counts are slowly going up now. She has such a great attitude it's amazing. She hasn't been eating well since we got home from the hospital from her chemo but she is eating a little bit. Her energy amazes me. We have been having dance parties everyday, it's been fun. Thank you for your continued prayers.