Day -1 (a much needed day of REST)

Today Kayla's body got to rest... a little. She is still experiencing some side effects from the chemo. Her jaw pain and nausea are still there. We are working hard with the staff to try and find the best cocktail of medicines to try and combat her nausea and her pain. We hope to have a very good plan in effect before she is discharged tomorrow evening.

Thanks to our friends here, I was able to go and spend some much needed quality time with Denny and Kayla today at the hospital. Laurie (Conner's momma) so graciously offered to play with Anthony for me! SO sweet of her! Anthony had a blast! When I got to the Hospital, Kayla was sipping slowly on some soup and crying because her jaw aches so badly. She had tomato soup and apple sauce in front of her. Both hurt her to eat. Everything hurts to eat and drink right now. Poor baby! It was so nice to finally be able to be in the room with Kayla at the same time as Denny so he could explain things in much more detail. Where Skype is great, it's still not the same as being there in person.

Despite Kayla's issues, we got a lot done in the time I was there. Kayla took her first walks around the BMT floor... TWO laps! It was hard for her to do the second one, but she did it! We were proud of her for really trying. Kayla also got a sitz bath which is why she had that small amount of energy to do the laps.

She also did her mouth care and her breathing exercises

By the time I left, she was playing Mario Kart again and trying to take her mind off of the pain. Always a good plan!

I met a few other really nice families here and got reunited with a returning family, Carter & mommy. Carter truly is one of the miracle kids you hear about! A week ago, the family was told it was time to start treatment and the chaplain never left their side. Today, he is running and laughing and playing! Everyone is thrilled and once again it is a reminder that miracles DO happen. Lately things around here have been good. At least as far as the people we have been lucky to encounter. Most of the kids are doing excellent and people's spirits seem high and hopeful! The weather has been really warm and everyone has been out playing a lot.

Kayla can't wait to get all of these bracelets off of her! It will be so nice having everyone back at the apartment together tomorrow night. She probably won't be discharged until around 7pm or so... hopefully not too much later then that. I am going to make her favorite, Tortilla Soup, in the crockpot. Even if she can only sip the broth, I'm hoping the flavors will keep her sipping.

Day -2

Happy St. Patty's Day to you all!

I just got back from my not long enough visit with my baby girl. I have to say, the promises of Helping Hands is a bit disappointing. We have called for them twice and no one has been available (or answered) during the hours they claim to be there. It's so hard walking into the room and not knowing the nurses or doctors like Denny does. Kayla is my child too! Denny does his best to update me and tell me everything I need to know, but I feel isolated and trapped here with a child who is not yet old enough to be let past the front desk. I hate that only one parent at a time is allowed to be with her when we work best as a team. Once we realized helping hands was failing us yet again, Denny decided to take Anthony down stairs to a play area in B clinic so Kayla and I could have some time together.  I can see it in Kayla's eyes and hear it in her voice that she wishes we could both be there with her. She asks me to clean her ears and put bacitracin ointment on her scar because dad wont or doesn't put it on like I do. When she feels pain, she asks me to call her dad and ask him if it's time for more medicine. We wait through multiple voice mails before he finally picks up so I can ask him since I have no clue what medicine she has in her and what is due next. It's a broken system and I don't like it. It's all we can do for now. Could we have left Anthony at home so we could have had this time together? Yes, sure. I can tell you now, I would still be just as broken hearted... just missing him instead. It is the most painful thing ever to first of all have to go through this, but to not be there together through the tough moments and sleepless nights.  I am just grateful that her third and final "dose" of chemo is over for round 1.  Kayla's new symptom is a very sore jaw.  It hurts to talk or chew. She is trying her best to eat apple sauce and soup, but even that is hard. She is still keeping up with her mouth care as well, but even swishing the liquids around is hard for her.  I asked the doctors how long we could expect her jaw to ache. It was hard for them to say. Every person is different. So all we can do is hope that this is the worst of her symptoms because more can arise. I pray hard that her sterility is not affected. I pray for the side effects to remain mild and long term effects from treatment to stay away! I want to wrap my mommy shield around her and protect her from all of this. I cried today when I was with her. I tried so hard not to... I just told her how much I love her and how proud of her I am. I told her again how much I wish I could just trade places with her so she wouldn't have to feel any of this.  She nodded her head and tried to comfort me. She tried to comfort ME. She is such an incredibly special little girl. So caring and so kind. 

I had fun decorating her window with the special paint brought in by Child Life. She wants to paint the windows, but just hasn't been feeling up to it at all. I was tired of them looking so sad. I had to leave my mark so that even when I am not there with her, she can see a piece of mommy when she's sad or feeling awful. I just love her so much. 

I asked Kayla if she remembered taking the video yesterday and she didn't. I tried playing it back to her to see if that would jog her memory a bit and she still didn't remember it at all. It goes to show how strong the medicine is that she is on. My hope is that she forgets her days inpatient all together! I wish I could!!! Even if she didn't remember yesterday's video, she did ask if she could do another. So here is her latest video message to share. I finally just figured out how to link the video from YouTube directly to the blog instead of just a link! Took me a while. Sorry! Also, I had to purchase more space for photos! It seems I used up my 1GB of space. For $5 per year I should have PLENTY of space now.  Totally worth it, don't you think?

Dad says he is going to get her into her new green nightgown that I got her after her bath. Hopefully he will take a picture of her in it for me :)

UPDATE:

Thank you Den for the picture! I bet you are happy to finally be in green... It's 6pm. Better late then never!

 

Day -3

Today was a MUCH better day! Kayla finished her second day of Chemo AKA Day -3. She was given Cyclophosphamide, and mesna. The Cyclophosphamide only took an hour whereas yesterday the chemo was given over a 6 hour period of time.

Before heading into the hospital, there was a big storm we had to wait out. It was POURING buckets. There was lots of thunder and lightening. We loved it! It did flood the grassy area outside though.

It's ok, Kayla found something fun and familiar to help pass the time!

Mario Cart on theWii

Kayla was pretty loopy again today, but not nearly as much. She just slurs her words, but has a great sense of humor still. We had so much fun telling her all of the funny things she was saying yesterday. She was cracking up at herself! Later, out of nowhere, she says to me, " Wait! This isn't our room! " As soon as I explained that it is her room and what is going on, she was fine. Overall, it was a much better day. Kayla didn't vomit once! She had a little diarrhea (which is a common side effect of cyclophosphamide). That was it. Tonight, when we were skyping before she went to sleep, she thought she was getting mouth sores. (She has been diligent w/ the mouth rinses they have her doing). The nurses came in and checked with the flashlight. They didn't see any. So our guess is that maybe she is feeling them before they come through. Poor baby!  Kayla was able to eat a little today though finally. Tonight, when they weighed her, she weighed in at her highest weight yet since returning! She weighed in at 17 kilos even (that's 37.4 lbs!!!!) WHOO HOO!!! Kayla was SO happy and SO proud of herself! She did the victory arm raise. Denny and I couldn't be more thrilled about that news. Basically, her body is doing what it is expected to do. Some of her counts were higher today because her body is in fight mode. They typically go up and then drop.  All to be expected.

Watching a movie... happy camper

While I was there today, I took this video to share. At first I wanted to take it because I know she will laugh her pants off at herself when she is not on anything anymore and sees how she sounded! Then it dawned on me that there are other people who will LOVE to see her and hear in her own words how she is doing. Kayla was talking a little quietly so I tried repeating her so it would be easier for you all to hear.

Click here to play Kayla's message :)

Anthony is doing GREAT. We had fun going to Target together today for some summer pj's (since it's been in the 80's here) and for something green for Kayla. She insisted on an all green outfit for tomorrow. I did find a cute green night gown w/ stars on it. Perfect since she will be in bed again all day tomorrow.

Anthony is also proving to have some wonderful art skills! It seems to run in the family. I love it! He just picks stuff up on his own. He is adding, subtracting, and really trying to sound out letters to form words. I couldn't be more proud of him! 

I thought he was very creative with the erupting volcanoes! Those he thought of and drew himself!
I actually like the pictures he draws from scratch himself the best :)

Tomorrow will be like today. It's the same chemo schedule. Then we can call round one ALMOST over as we wait for those counts to rise, rise, RISE! We will be able to utilize helpful hands tomorrow as well so Denny and I can both hang with Kayla at the same time. Anthony will be busy doing more art and playing with the amazing and attentive volunteers. He loves the attention. People who play anything he wants all of the time. haha. I am counting down the seconds until we are all here back at the Target house resting together and finding fun things to do to pass the time.

Thank you for all of the prayers & love.... we love you all right back!!!!

Day -4 (Round 1)

Day -4  Finished! What a relief.

 I woke up early and started having a little anxiety. It was so hard being here at the Target House and not able to be in the room with Kayla. I know that she is in excellent hands. That's not the problem. It's not seeing with my own two eyes what is happening to her.  I called Denny and we were able to skype each other. Kayla was up! She was only on IV fluids (hooked up to her buddies). She was alert and fine... she just had to pee often. As to be expected!  Denny tried a few different spots in her room to set the computer up at and he finally found the perfect spot! Just at the foot of her bed in the little nook under her TV. And there is an outlet so the computer can stay charged! I spent my morning skyping in with them and it was heaven!!! It made me feel like I was right there with them which was so awesome. Before we knew it, the nurses came in to get her set up for her first round of Cisplatin, amifostine, and vincristine. I decided this was a good time to at least take pictures of my screen so I could share this with you who love her and follow her story so closely (and we THANK YOU for that!)

Starting off with a routine blood pressure check

Here they are getting the Cisplatin ready. Kayla was watching and asking all of her normal questions. I was watching wide eyed. SO glad I thought to grab my camera to at least have these pictures.

The nurses had Kayla lay flat for an hour to help with the medicine. She also received Benadryl, Adavan and Zofran. You can see that the medicine is covered by a black bag. This is to keep the sunlight off of it.

Daddy was reading a story to Kayla to help pass the time

Other then her having to pee a lot, it took a while before we saw the medicine start to take effect.  It didn't take too long for that to happen!  She was really tired and zoned out.  She was wobbly when walking and was hallucinating a lot. I shouldn't say was, because she still is! She saw Denny's  ear phone cords that go to his phone while we were talking and thought they were snakes! She said, be careful because they will bite you. She yells at Anthony and tells him to stop playing on Dad's phone (Anthony isn't there!) As funny as it is, we can't wait for this to go away. She hasn't really eaten much at all today and when she did, it came right back up. There were times she was just dry heaving. We are still working on finding the perfect combo to help her stomach settle down.

It was so wonderful skyping this morning. I called it mommy medicine! It was powerful and fulfilling. Anthony and I drove down and Denny and I swapped. He was able to have a nice lunch in the cafeteria with his boy. :)  Kayla and I had a few trips to the bathroom. She has to go at least once an hour.

Kayla and I walked down the hall to the front to meed Dad and AJ at the "fishbowl" so they could chat. Well, there were no walkie-talkies! The woman at the nurses station said sometimes they are there and sometimes they aren't. We were going to try and just use the phone at the front desk, but the smell of the mask was making Kayla go a little crazy. She couldn't handle it. Back to her room we went. She was able to call out to the fishbowl from her room phone though! that was good. They had a lovely chat about nothing really. We kept it short and sweet so she could try and get some rest.

For the most part, Kayla did good today. She was able to get up a little. We were SO happy when the time was up and they were able to end this cycle. We just hope and pray tomorrow is a little easier. I pray she can keep something down. Even if it's just broth!

Not to any ones surprise, but Denny proved once again to be such a rockstar dad! The nurses love him. He is on top of everything and hanging in there. I keep offering help or to swap and he won't have it. He swears he is doing great. I know I would be able to tell if he wasn't and he really seems to be... honestly! :)

I took this picture right before I left. She was so much more lucid.  Once I left the loopy Kayla kicked into high gear. Some of her funny Kayla-isms:
" Dad, be QUIET! Even dogs can hear you"
"Get off your phone AJ"
"I'm gonna let Anthony get a puppy, it's ok..........."
"OMG! Did you see that?" what? "I just saw Bigfoot!!!"

Tonight,  I hope and pray that Denny and Kayla get a little rest.  My brain is on overload.  It's all a lot to take in. She is doing good though! She isn't having any abnormal reactions. That is a blessing to be thankful for! 

Keep up the prayers our prayer warriors..... so far they are helping!!!! 

Admitted and ready to kick booty- round 1

As the day winded down, we tried so hard to have fun. It was hard knowing that we are facing yet another unknown in this journey/battle. The day started out fun at the hospital. The band was setting up in the lobby as we arrived. What a way to eat lunch! It's not every day you get to listen to a band play live that was just playing at the Grammy's! Only at St. Jude I guess. EVERY sick person should have these moments to cheer them up. It does help the spirit. Maybe someone knew we needed a serious spirit boost for what was to come. The lobby was packed. We were all dancing and clapping.

 During the performance,  the kids had fun making a pizza. 

Half black olive (kayla) & Half Pepperoni (AJ)  

When we got back to the apartment it was time to get Kayla and Denny packed and ready for their first inpatient stay. We got Kayla over her fear of the mask by making her try it on for the first time.

Trying on her mask... getting her used to it.

Not too bad... we just need to trim the top! I told her to smile. I can tell she is!

Anthony and Kayla started serious bonding time when time got closer and closer to admission. They get it now.

 

I love this pic. Look at those lashes! You see the really long ones? Those are her originals that remained after radiation! The shorter ones are what has grown in since... Such a cool mixture. :)

We spent some fun family time playing games and watching Kayla read to her brother... one of her favorite things!

Anthony will really miss this while Kayla recovers from her first round of Chemo

Kayla's new temporary address... and her new lucky number! 1+7= 8 :)

This will be our savior soon. It will be our only time where Denny and I can actually be in the same room with Kayla until she is able to leave inpatient. (remember, Anthony can not go past the glass wall because he is under 7)

Someone is ODDLY excited for this. I think she wants it over with too. Ya think?!

And I can see... she is still laughing and giggling. Even as they hang her bags full of fluids. Have fun getting up all night while she has to "go". (if I were there, I would put a pic in here of den on the bed making the same face as the picture just before this one!)

Good girl! Time to crash............ WE LOVE YOU!!!!!

Tomorrow I will post as I can. Kayla.... you are a warrior. We are so proud of you!