Wednesday, May 30, 2012

Day +14 Round 3. What is normal?

This week I have felt enough anxiety for the world. As many of our friends prepare for transplants or scans and we go through our own batch of tests and scans, I catch myself holding my breath a lot. Last night as I tried to put my mind to rest,  I couldn't help but wonder if it would ever get easier. Waiting to hear if the effects from Chemo and Radiation have started to effect her innocent body... It makes me so sad to think of how much time I have dedicated to keeping these kids safe and protected from danger.  Here we are watching and waiting. Hoping and praying. 

A wise friend told me, not every person will know this kind of stress and pain. This I do know.  I have to find it within myself to be at peace with that.  I going to try and look at that as a gift we have been given instead of this sad injustice.  Where we might have skated through life living, or thinking we were living, this will experience brings on a whole new appreciation for the life we have yet to live. Colors will be brighter. Sounds clearer. Vacations more meaningful. Friendships stronger. Each milestone more cherished.  Instead of being bitter or angry I want to try and see all of this as a blessing. The lessons we have been taught here have not been a coincidence. It's what we do with it all that matters most. 

Kayla's ANC has started to climb which is great! She was at 1200 yesterday. Soon we will celebrate a "normal" ANC level, end our GCSF, and spend a week playing... hard! It will be time to prepare for our final battle. This one will for sure prove to be the most exhausting yet.  If not physically, mentally.

We did learn that there were some changes with Kayla's hearing. Her audiology report came back that she now has mild hearing loss in one ear and moderate in the other. Where this sounds shocking, it's not that bad! Luckily, it's only in the high frequency range. So, it isn't anything that will effect her speech or her ability to hear people. We expect that the Cisplatin will continue to do a bit more damage in this last round. We hope that the only change will be that the ears even out at moderate loss. This is what the audiologist is assuming will happen following her pattern, but you never know.   Then, we just really hope that the damage doesn't continue after she finishes her treatment which it can.  The audiologist will continue to test Kayla every three months when she comes back to St. Jude for her scans until we are sure that her ears have stabilized.  One thing we did learn is that the scientists have discovered that hearing loss can now be reversed in birds. This is huge. Up until that discovery, it has been irreversible. Now we just need to find a way to apply it to humans! Oh... and find that CURE!!!!!

Kayla had her EKG today to make sure that her heart is still doing ok.  Tomorrow she will have her pulmonary check up and continue with the rest of the tests to clear her for her 4th and final round.... hopefully for life.  She is one incredibly strong little girl. Wise beyond her 8 years. Full of life. Full of laughter. Full of fight!

Saturday, May 26, 2012

Day + 10 Stuck Inside with too much time to think

This afternoon, we went into the hospital for our only appointment which was just to get Kayla's GCSF. When we checked in, we were informed that she was supposed to be in an hour earlier for a blood draw. Yet again, we were not called prior to our original start time to inform us that there was a start time change and appointment added to our schedule. So, off we went to Assessment Triage to give blood. While Kayla was getting her G, the on-call doctor came in and told us that Kayla was also going to need to get blood and platelets again! It's only been 4 days since the last time. Ugh. It takes about 45 minutes or more to get the blood ordered and then another 3 hours once it starts. So, there went our Saturday. It's ok. Her ANC is only 200 still so it's probably best that we keep her inside anyway. 

Maybe it's not a horrible thing to be stuck inside where there is air conditioning when it's 98 degrees out, but this wasn't in our plans for a Saturday off. When am I going to learn that I can't plan anything?  Ever again.  I have been having a little bit of anxiety again about how hard it will be to go back home and try and live normally again. The idea of booking appointments and working is hard to swallow. Going back, I will have to work more then ever.  I worry I won't be able to bite my tongue when asked questions that I have literally poured my heart out about in this blog.  I lose it in grocery store isles when I hear mom's complaining about their kids having a cold. I have caught myself scowling at mom's who's babies are wrapped in hemp baby carriers in whole foods wanting to yell out, "it won't protect her." I feel absolute disgust when I see parents yelling at their kids and physically threatening them.  Do they not realize how lucky they are to have what they have? 

I get scanxiety* at even just the thought of the upcoming visits back here. I have always been a planner.  Now, I find the thought of planning anything in the future gets my heart racing.  The kids would LOVE to have a dog again. I had originally promised that after Anthony started Kindergarten (and I had more time to train it) this could be a possibility. Not now. Who knows what our future holds. Part of my brain tells me that we still have to go on living our lives and not think too far into the future. Part of me says it would be completely irresponsible to even consider anything that can't be cancelled or returned.  

Denny and I had a long chat late into last night about how "lucky" (and I use that term loosely) we were that the situation worked out the way it did. With Anthony being the age he is, it made us all able to be here as a family this time. If the tables had been turned and it was Anthony, would we have been able to take Kayla out of second grade to be here as a family? Probably not! So, it's kind of strange mixture of emotions... grateful and sad.  So scared that the only thing that keeps us so positive is being here together. I am afraid to think of what it would be like if we were split up.  Just when I get all wrapped up in my own problems, I walk downstairs and see a beautiful vivacious girl, just about Kayla's age, who will not be going home. She will be kept comfortable as the cancer eventually invades. My heart will ache as we watch her parents leave St.Jude for the last time. They don't get the luxury of experiencing *scanxiety.  It is not fair. Not fair at all! So, I try and focus on the fact that we will be bringing our daughter home. No matter how scary the rest seems to us right now, we need to stay focused on that. The rest will come as it will. It's already planned out. We just don't get the sneak preview... nor do we want it!

(Adult / Slang)
(Noun) (informal, among patients) the tension and fear that is felt leading up to the time one learns the results of a scan
Usage: The scanxiety began a few weeks before her scan and continued to increase until she received her results!

Family = LOVE

Thursday, May 24, 2012

Day + 8


 SO proud of you Kayla... These beads are such an incredible reminder of the warrior you are!

We have our next official/unofficial chemo date. June 8th! I say official/unofficial, because all things are subject to change here. Assuming things go as planned, that is her final date. Oh what bittersweet feelings I have for that day.

Kayla is doing really well. She had a lot of energy for the most part. Her ANC is still at only 100, so we are actually surprised at how well she is doing.  Here is Kayla on a really cool bike doing her PT. She loved it. I laughed at all of the straps and the helmet (and how much time it ate up just getting her ready to ride). We only get 45 minutes to do PT, but safety first!

Miss Lauren is taking Kayla's pulse before she rides off

After the bike exercise, we had just enough time to do some "Just Dance" on the Wii to "It's Raining Men". You know Kayla loved that!  Today, Anthony mastered jumping jacks.  We have also told him that we aren't allowed to leave here until he learns to ride a bike without training wheels. So, that has made him pretty determined to learn.  

When we returned to the Target House, an envelope was waiting for us. Enclosed were the copies (English and Spanish) from the PSA add that Kayla and Denny were in. Remember me posting pics from it? It was filmed the day Kayla was released from her first round of Chemo. It was so cool watching it on our TV. I must have rewound and played the scene with Den and Kayla 20 times! It's INCREDIBLE. So cool to watch this commercial for such and amazing place entirely filled with faces of people we know! You will all love it. It is supposed to air in the summer I believe. In true St. Jude commercial spirit, it's awesome! We hope it encourages a lot of people to log on and donate to St. Jude. This hospital is 100% dedicated to finding a cure and saving lives.  In case some of you aren't on Facebook, I thought I would add this one picture. Just astounding... and so incredibly awful. So, please... I beg. If you are asked to walk for a cause or donate... please ask how much money is actually given to that cause? You will be shocked!

I can't share the commercial with you, but here is a preview (a pic I took of the screen) of the part Kayla and Denny are in so you can look for them.

We should be getting pictures too from the photo shoot's she has been in. I will share them. So proud of my girl! YOU GO KAYLA ROSE!!! NEGU!!!!


Tuesday, May 22, 2012

Day +6 ... happier girl!

Finally... the storm is ending. The sun is shining through.  Kayla is starting to return to herself!  Last night we finally started to see it turn.  Kayla's tell-tale sign that she is starting to feel better is when she asks us to play music for her. This girl loves to dance. I love that she has no inhibitions and isn't afraid to dance at a moments notice no matter who is watching. The sparkle in her eye and the smile on her face is infectious. The last time she danced this much was at the zoo. They were playing music she liked over by the rides in the park and Kayla was gettin' down! The people who ran the rides came out of their posts to see her. It was really cute.

I posted this on Kayla's FB page last night, but I know not all of you are on Facebook. is the link in case you haven't yet "liked" it. :)

Today was a very long day. It started at 9:30 and ended at 6:00pm.  Kayla had her last dose of chemo (Vincristine) for this round, her GCSF, plus she had to get platelets and blood. That's a LOT in one day. We are so happy that tomorrow they have only scheduled one thing, her GCSF at 12:45! So glad we can all rest after this long day.  Kayla is still getting sick, but in much further increments.  We have buckets and barf bags strategically placed and luckily with Kayla's age, she knows when it's close so we don't really have many "accidents".  I never thought I could actually eat a meal or drive a car during the sound of someone I love getting sick... crazy the things that you can become used to!  For the record, I still hate it!

This weekend it's supposed to get into the 100's outside. We are taking advantage of the outdoors now while we can.  I'm still waiting on the humidity to kick in and those lightning bugs (fire flies to some) to appear! I'm ready to see their magical glows.

Back at home, our friends are busy putting together an incredible event to help us out once again!  It's the 5K for Kayla!  Wow!!! I am bummed to miss this one. It is going to be a blast!  We are so grateful and honored to be part of such an amazing and loving community. We humbly thank you all so much for reminding us once again why we miss home so very much!!! 

If you haven't figured out how to be included in this incredible event, here is the info:

Or register directly through the Eventbrite button below
Eventbrite - 5K FOR KAYLA ROSE

Sunday, May 20, 2012

Day +4... and that's the only "+"

With an ANC of only 100, our brave girl continues to feel wretched. It's so hard to watch her gripping her stomach in pain and not being able to articulate a way for us to help her to feel any relief. She looks at us with pleading eyes trying anything she sees us agreeing on to try and help her find comfort. When it doesn't help, she is frustrated, sad, and scared the pain won't ever end. We continue to remind her that this is what has happened after each round of chemo and that the pain and nauseousness will go away eventually.  Telling her she only has one more round is no longer a comfort to her at all. In fact, it can send her into a spiraling whirlwind of emotion that she has to feel this again. For her, one more round is too much to bear. For me it is too because I am so scared and tired of feeling so helpless. The days are dragging along slowly right now...

Last night we tried something new. Instead of giving Kayla her TPN before bed, we decided to skip it and hook her up in the morning. We wanted to see if her not waking with a full bladder would provide her with the restful sleep she needs so desperately.  For the most part, it did help! She got a beautiful stretch of pure uninterrupted sleep from 7:00pm until 3:00am. Unfortunately, she woke up, got sick and that pattern didn't end... all day.  We can tell her tummy can't handle much more when her breathing changes and tiny whimpers and groans start emerging. I can only relate it to labor. They build and build until she finds temporary relief after "getting it all out".  I heard her pray a few moments ago for God to make her tummy stop feeling this way. I hope he hears her. I know that usually the first week out of Chemo is the worst. Like I said before, it's like watching a sad movie for the hundredth time (and in this case for the 3rd time). Even though you know the outcome, you still wish you could change it.

For the record, I hate this.

Friday, May 18, 2012

I think I'm blogging in my sleep

Exhaustion does not feel good. Burning eyes. Limbs that feel like lead. A heart that aches. It's not a good look. I don't recommend it.

Last night was Kayla's toughest night yet. We had a feeling when she started getting sick at about 4pm yesterday that we were going to be in for a long night but we were optimistic.  When you haven't eaten anything in two days and there isn't anything to get rid of, it's worse. She was up every 30 mins all night long. Each episode lasted a good 10 minutes. She was sobbing through the heaves out of pure exhaustion and pain. Our hearts echoed those feelings. Pure helplessness. Agony. Just sadness knowing there isn't anything we can do to comfort her or make it go away. Benadryl, Ativan and Zofran didn't even touch the nausea or let her rest. The Zofran and Benadryl are given in eclips (they look like grenades) which are even more powerful because they are given through her central line. You can imagine how her tummy must feel with all of that medication in her and no real food to help soak it up. There really only is one more thing we can try, Phenergan. It's just a heavier narcotic to hopefully help with the nausea more effectively while allowing her body to rest. It's very strong. We are hoping this will give her more relief tonight.  To make matters worse last night, the fire alarm went off at midnight. Yep! Seriously. The entire building had to evacuate until they cleared us all to go back in. At 4am Denny was sitting up on the couch in the dark. Kayla was on his lap. It was the only way we could console her and get her to be able to rest. Her chest was pounding. Everything was aching. We all just wanted to sleep.  It did not look comfortable. So, once again, Denny gets the father of the decade award.

It's 3:00pm. We just got back from the hospital. The day there started at 8:30 am in assessment triage where her blood was drawn and all of the other various checks are done (blood pressure, weight, and a temp check).  We were lucky to get in to see the doctor and get Kayla's GCSF earlier then scheduled because Friday's are generally lighter days for the hospital. It was a good thing because we really needed to get back and rest. Unfortunately, we had to wait a few hours after, yes hours, for the new prescription to be filled.  Kayla is still getting sick a lot.  Not every 30 minutes, but at least every hour. Poor baby. I hate this. I know it's not forever.. but on days like this, it feels like an eternity. 

Wednesday, May 16, 2012

Kayla got sprung!

At 3:30 we got to go home together as a family again! So so happy! Aside from being very tired, Kayla is in good spirits. She took a nap when she got home, woke up to eat dinner, and went back to bed. All good news to share there. Kayla's ANC was 600 today and has been dropping by about half each day. Tomorrow she will be near or at zero. So, we will be laying low for a while which is fine by us!  We have an early start tomorrow so I am going to keep this short and sweet! I want to go and sit next to my husband.... :)

Good night everyone! Much gratitude tonight!!!


Tuesday, May 15, 2012

What a difference a day makes

Taken Yesterday (Day-2) Fighting off the fever

This morning, Kayla's temperature finally broke. It was hovering around 103 all day yesterday. It was hard to see her in such obvious discomfort, but we continually hoped that the fever was doing it's job at attacking any virus that might have been trying to creep in while her ANC was still high.

Today Kayla has been enjoying her day of rest.  Denny took Anthony out to mud island and back over to the park at the Ronald McDonald House so he could play. Meanwhile,  I got to hang with Kayla which was good medicine for mommy. We played a few games of Sorry! (She beat me every time), her new found love MadLibs, and I had a blast just watching her dance in her bed to music. It warms my heart to see her happy today. It was exactly what we all needed to see after the past few days which were so hard to watch. I am grateful for today and grateful for each smile.

Tomorrow Kayla gets her cells. That means it's almost time to for her to be released!!! I can't wait!  Thank you to all of you for all of the prayers and good vibes that have been sent out. We were feeling them today for sure!!! Keep them coming because anything is possible here....

Sunday, May 13, 2012

Happy Mother's Day

My beautiful Mother's Day gift from Kayla
Thank you for all of the lovely Mother's Day wishes. Kayla is doing "ok" today. She is sleeping a lot and getting sick a fair amount. I skype in with them when I can and Denny updates me any time there is change. The only thing that makes me feel like it's ok to be away from her today is knowing that if she isn't getting sick or going to the bathroom, she is sleeping. Other then that, there really isn't too much anyone can do.... we just sit and wait. This is when the minutes seem like hours.

Anthony and I had a lovely Mother's Day lunch here at Target 2 with our good friend Laurie! She was able to get out and have lunch while Connor and his Dad were at the hospital getting his GCSF. Laurie and I both were happy because we got to sleep in! Anthony ate a little bit and then ran off to make some Mother's Day art for me and of course, baby puppy. That darn puppy gets as much love as I do! It was nice because we got to just sit and talk. Just the two of us sitting and talking about all of this. To have someone who is going through as close to what we are is such a sad and wonderful blessing. Sad for obvious reasons... no one should have to go through this! But, such a blessing we can totally relate and share our worries, fears and the things that keep us lifted.  After lunch, Anthony and I went to a couple of parks and finally settled over at the Ronald McDonald House to play for the first time. The playground was awesome! Anthony had a BLAST. We both said we can't wait until sissy can come and play there too!  We had the place to ourselves. It humors me to watch him in action. He plays so well by himself. He talks out loud. Makes up games. Challenges himself constantly and we both just laugh! He is a hoot.

This morning, Kayla's puffiness started in. Same as last round. Her eyelids were almost swollen shut as we Skyped. She still seemed in good spirits despite constantly rubbing them.  This afternoon, Kayla's temperature spiked to 101.7. Also, she wasn't getting rid of enough fluids. We were happy because we thought it was going back down (99.3) but then wham... back up to 102.7.  They are monitoring her fluid release very closely right now. They could give her meds that would help with it more, but they are hard on the kidneys. We all agree that her kidneys are taking enough of a beating right now and we will keep doing what we are doing and watch it closely.  Right now, she is sleeping.

I hope that all of you were able to enjoy today and do something special. Time with your kids, grand kids or your own mother? Anyway, I hope it was wonderful.  To my mom, I love you. Thank you for literally holding down the fort for us while we are gone. I am so proud of you and thank you for being such a role model to me. I love you with all of my heart! To my mother in law, Cheri, thank you for always being there for us and the kids. Your smile and your heart are the first thing that come to mind when I hear your name.  We love you! We miss you both so much and wish we could be together today.  Just glad you are both in the front seat of our cheering section!

Saturday, May 12, 2012

Day -4. I hate this one.

Day one of round 3 complete! I am so glad this day is over. It's for sure the hardest of the three. Hardest for Kayla and by default, hardest for me. It's so easy once she is here and her counts start to climb to put the reality of that drug and what it does in the back of my mind. It's so easy to think good thoughts and put the fears and worries away (for at least most of the day).   I knew when I dropped Kayla and Denny off last night that I would be going through these feelings again today. I tried so hard to make them different. To prepare myself or find ways quickly, before reality set in, to change them somehow. You know how you might have seen a movie over and over? You know the outcome. you know it's going to be a tough part and even though you have seen the movie over and over you think for a moment you can change it? Well, maybe you haven't... but I can only relate it to that.  No matter what, when the day begins, reality just slaps you in the face and you are going through the emotions all over again.

I Skyped in with Denny and Kayla and got to watch the room for a while before I felt comfortable enough for a shower. I usually put the microphone on mute and shut the camera off on my end and just keep the feed on. There was one night after the first round that I had lost it. Denny and I were sitting on the couch and I was explaining how hard it is to be on this end. Wondering what is going on in their room. I am left to wonder if he is busy with nurses, sleeping, or tending to Kayla. Always afraid to text or call because I would never want to pull him away from her or something important. But as a parent, I'm on the other side and feeling so helpless. I know she is in incredible hands and I know Anthony needs a parent to be attentive to his needs as well. They both need us... in incredibly different ways. So, we do what is best for our kids.  There are personal sacrifices. But we just do what works best for them in the long run.

It was almost lunch time. I had bags filled with snacks, a green smoothie drink, protein drink and a package that had just come for Kayla as I was heading out. It was from her Girl Scout Troop. I knew there would be something in there that would make her smile, so I brought it.  Anthony and I hopped out of the car and I practically had to beg him to carry one of the bags in for me. He moaned and groaned, but did it anyway.  We headed in through the heavy rotating door in the Chili Care Center building and headed for the security desk. On the weekends any visitors (yes, that would be us) would have to check in there before proceeding. We got our bright orange stickers that cleared us and we headed for the elevators. Anthony happily pressed #2 and off we went. When the doors opened, he couldn't run fast enough until he stopped in the fish bowl. He has his own routine. He washes his hands, uses hand sanitizer and then heads straight for the automatic paper towel dispenser for some "paper" to draw on.  This seems to hold him over for about 30 minutes before he starts to get a case of the wiggles.  I sent a text to Denny to let him know we were in the Fishbowl. It was a good 25 minutes before he was free to tag me in. You can't be in a hurry when it comes to that place. So I bring a book. That is my new strategy to calm my nerves and it seemed to help today... a lot!

I walked down the hallway and headed into her room. Her nurse, Heather, was there greeting me with a warm and sincerely happy smile. She seemed happy for me to finally get to be in there. We chatted a lot about how I first knew something was wrong with Kayla. The steps that led us here. The details of telling her.. secret cries, waiting for surgery, not responding well to the news that our journey ended there. I wish so bad that I could thank Dr. Gupta now for the total resection. I mean, at the time all I could focus on was that he thought it was not benign. Wasn't it his job to get the whole thing out? Oh ignorance is bliss sometimes. I am actually glad that I didn't know then what I know now. I was protected from knowing all that I do now. When I look at that picture of him. That picture that Kayla made me take of the two of them right before surgery... It's haunting. His smile says one thing.. his eyes tell a completely different story. The shear concentration that was needed. The fact that he knew exactly what he was up against. I have mentioned it before... but it haunts me and I am so grateful. So grateful that he was so focused. 

Kayla continued to sleep mostly which we welcomed. I can't imagine trying to get her to be awake through that if she didn't need to be. Who would want to try? She woke up when she needed to use the bathroom or if she felt sick. At one point we walked to the bathroom so she could go and when it was time to wash her hands she ended up getting sick in the sink. I remember looking at the Cisplatin and just saying... "I hate you". The nurse nodded. I don't hate the Cisplatin if it does it's job and the cancer never comes back. I do hate that it makes her feel this way. I hate that it could have horrific after effects. It's just not fair that there isn't a cure by now. It's not fair that you go through this and it's with hope... it's not a for sure cure. That is not fair.

Kayla climbed back into her bed and when she tried to talk to me she had trouble. I told her it was ok and that I can usually read her thoughts. It only took one try and I knew exactly what she was trying to say. "She is feeling better now after getting sick and that she loves me".  I asked her if that was what she was trying to say and she smiled and nodded yes. I saw her breathe a sigh of relief because she didn't have to tell me. I took this moment that she was feeling "ok" and asked her if she wanted me to open her package. She nodded yes (of course!)  Inside was the most beautiful quilt that the girls in kayla's troop had put together for her! We could see how much love and thought went into each square. I could tell Kayla loved it!  Thank you girls... it's beautiful. (and now hanging on the wall in our living room here!)

After about 1 1/2 hours, Denny and Anthony had returned from a long lunch together. There is only so much time you can spend with him in that fishbowl before he becomes loony.  I gathered up my bags and told her that I wished so bad that I could stay longer. Unfortunately, helping hands didn't come through for us... again. I could hear Anthony screaming and laughing from down the hall and my pace increased.  As soon as the fishbowl was in sight, I could see a tinge of relief in Denny's face. So, off we went.  I got back to the room and popped in a movie for Anthony. I knew I needed a few moments (or hours) to just be a mess. And I was. Who wouldn't be? When that kind of reality hits, sometimes it hurts. Anthony climbed into my lap and gave me a hug asking, "Mom, are you crying because you love me SOOOO much?" I said, "Yes. That is exactly why. I love you sooooo much". He just hugged me harder.

Happy Mother's Day to all the mom's out there.  Kayla was actually born on Mother's Day. Last year was spent sharing it for the second time.  I remember telling Denny that I wanted the day to be focused on Kayla. I would have other years to celebrate Mother's Day alone.  With Denny's birthday and Kayla's only one day apart there will be years we share the love... and that is fine by me. We just thought this year would be different. I promise next time the date is combined that we will REALLY celebrate... We will have so much to be happy about that year!  We have so much to be happy about each and every day really.   Happy Mother's Day!

Friday, May 11, 2012

Ding! Ding! Ding! Round 3......

And so it begins... the 3rd round. After this, we will have one more! Actually, tonight couldn't come fast enough for us.  Well.... all of us except for Kayla.  I can't blame her.  She is dreading how awful she will feel and so are we for that matter. We have a new strategy. We have decided that when she throws up, it's the cancer leaving her body. It's not a bad thing but a good thing. She says, "Cancer, you are NOT welcome here" and prays a lot.  Kayla has thrown up every single morning since the 2nd round. So, if we go by this strategy... we should have a good chance at beating this monster!

Kayla packed her new purse that she got from the Zoo with her ChapStick, a bag of pirate booty (she thinks she might like it again) and her diary. Oh, and don't forget the Caprisun!  She is ready to kick this round to the C-U-R-B!  Now, can we please get a C-U-R-E????? :'(

My hero. My warrior. My amazing 8 year old angel. She makes me so proud!!!

Thursday, May 10, 2012

Finally, a day of FUN!

It was a very busy day full of FUN. Finally! We really needed this. The day started out nice and slow... we got to sleep in, which we all really needed. Then we decided to head into town because Kayla wanted that soup! We tried three restraunts before we found a soup she would eat! She will now only eat Tomato, Miso (her new fav), creamy potato and Chicken Noodle soup minus the noodles (yes, broth... which she is now really sick of). So, we finally got to try Huey's. Lucky for us, they give St. Jude families 50% off! I had no idea! Our waiter, Aaron used to work for ALSAC. He said he hated to leave St. Jude but it came down to money. I can't imagine they pay top dollar since it's a non-profit!  Anyway, he was great. The food was great! And we got some Creamy Potato in Kayla's tummy :)

After that, we finally got to go to the Zoo! What perfect weather!!! Seriously, it was fantastic. We had a wonderful time. Kayla held the map and guided us all over the place. We got to ride the train, the tram and see a sea lion show.  Kayla was full of energy. Even dancing and joking which is always a good sign. I love when she breaks out the dance moves in front of everyone to see. This girl is starting to lose her shyness when it comes to that making everyone around her smile and beam with love! It's incredibly infectious...
 The ostriches
 My Favorite, the Panda's!!! SO cute :)

The Alligator
 Pythons! (can you see his tongue?)
 She was VERY intrigued with Kayla. She followed her up and down and started climbing the glass. Kayla wondered why? "She said maybe she can tell that I have more meat on my bones and is hungry?!"

"I'm HUNGRY... get me through this glass!"
Two Dragons. I just took a lot of pictures! ;)

After we finished having fun at the zoo, we went back to the apartment to rest for a few minutes and off to the playground we went! Kayla wanted to have her toenails painted with the OPI polish her Neena sent her for her birthday. So, we grabbed scooby-doo bingo and the polish and headed out. Anthony and Dad were already outside playing tag with a couple other kids. Kayla and I got to work while laughing and watching. Bingo was a lot of fun while we waited for the polish to dry. I thought our night was wrapping up because it was 7:15pm, but the birthday girl (yes, belated) wanted to go to El Toro for those nachos. SO, off we went!  It was a great day. One we will cherish forever.  Thank you for all of the birthday wishes! Kayla says to say thank you to all of you!  

Tomorrow night, Kayla will be admitted for round 3! It's GO time. She is prepared for it. Ready to conquer! I will update the blog when there is news.. promise :) G'night!

Wednesday, May 9, 2012

Happy 8th Birthday Kayla!

What a crazy couple of days around here! Today ended up not at all what we had planned. It goes to show that you just can't plan much anymore without a plan A, B, C, D & E.

You read my last update about our recent change in plans as far as being admitted. I'm glad Kayla is home right now. She would have be sitting in a hospital bed on the evening of her birthday if they hadn't. So, part of me is so grateful. Part of me is oddly bummed to delay round 3. Every day we get extended is another day away from  home.  I think tonight I would feel this way no matter what the outcome though.  Kayla is happy to be home still and I am quickly changing my mind to be grateful that she will not be sleeping to the sound of beeps, temperature checks and blood pressure checks all night long tonight. That does make me feel better!

Unfortunately, Kayla's day at the hospital was very long. She didn't finish until about 4:00pm so that made it too late to go and enjoy the zoo.  Kayla assured us that she was ok with this and that we could go tomorrow. Tomorrow they have only scheduled us with PT at 8:30am (which we will skip). So, tomorrow, we will do whatever she wants to do! Instead we spent the afternoon opening gifts and cards. Laughing at the mess that was left behind pointing fingers as to who would clean it all up!

 Even Anthony felt a bit of love! (opening the movie Robots)

Tonight instead of going to El Toro Loco, Kayla decided she just didn't feel well enough to go there and requested soup at home. Fine by us... as long as she promised us one bite of birthday ice cream. Something needed to make me feel like a part of this birthday was normal

I'm sure you can guess what her wish was! It's the first time her wish has ever been anything but wishing for Chance (her beloved dog) to come back from heaven.

A special thank you to my Auntie Ann who included this birthday candle in her package. We would have not had a candle tonight for her to wish on! :)

My baby is 8. I am so proud of her! I thanked her again tonight for choosing me as her mommy and she said, "you're welcome".

A change in plans

Kayla will not be admitted tonight to start Chemo tomorrow.  Although her weight was the highest since arriving at St. Jude (40.7 lbs... GO KAYLA!) her blood levels weren't quite up to what they need to be.  So, Kayla will be at the hospital a few hours longer today to receive blood. We will still celebrate to the max once she gets out! The plan is now to be admitted on Friday night and start Chemo on Saturday morning. It only puts us back two days so it's not too bad. This is what I mean when things can change on a dime around here. Kayla's having a lovely birthday so far.  She is requesting nacho's for dinner tonight. El Toro Loco here we come! Thank you for all of the kind emails and FB messages. She is feelin' the love! We all are... THANK YOU!

Tuesday, May 8, 2012

Happy Birthday Denny

Happy Birthday to you Denny! Today we celebrated you and your life. I don't even know where we would be without you. Thank you for keeping me laughing and for never getting tired when it's 2 am and  I can't stop sobbing. You never sigh or complain. You always know just how to love me and get me through the toughest times.  You are the true yin to my yang. I love you!!! God do WE love you!!! Cheers to you today, every day and always.... THANK YOU!!!
Today was a light day as far as hospital appointments were concerned.  So, we decided to go and catch that new pirate movie after School got out. There were only two other people in the theater which was a good thing as far as germ control! It was kind of a snooze but the kids had fun.

We then came back to the apartment to get ready for dinner out. Benihana's was hosting a free dinner night for St. Jude families. Denny and the kids have never been. I knew this would be such a fantastic way to celebrate!  So, we got ready and headed over. True to form, we were met at the door by Geisha Girls and let out to tables set up with appetizers and anything we wanted to drink. Cups were adorned with paper umbrellas which the kids really loved!   We went over and sat at our table. Waitresses helped us bring all of our dishes and drinks over too which was a nice touch. They were truly there to take care of us. Shortly after we sat down, a very sweet mom and her 10 year old daughter were seated with us. Oh, and she had a 7 week old sleeping baby with her too. I almost forgot because she was such a gem! We only had a few moments to chat before our chef came over. She told us that they had just arrived back at St. Jude of their scans and more tumors were present. :(  It's hard to find words to say to someone who is facing my biggest fear. I just told her how sorry I am that they are having to fight the fight yet again. She told me that her daughter had left tumor free and that this was a sad shock. Luckily she is on a very new protocol that only one other kid has ever been on (in England).  So, another child begins her journey again. I hate that!

The chef was able to dazzle us with his skills keeping us all laughing and having fun. It was a good distraction to the reality we are constantly surrounded by...  Dinner was delicious. Kayla LOVED the onion soup and the rainbow sherbert for dessert. We were so happy she found something there that she liked! After what was left from our dinner was put into to-go bags, the manager came by to thank us for coming. I told him, "No, thank YOU for doing this for all of us."  I explained again how much this means to all of us to be put in these moments where we get to temporarily forget what we are doing here.  He told me that they do a lot of fund raising for St. Jude and that tonight they will be presenting St. Jude with a check for $55,000.00!!! I started to cry! I get so emotional over this stuff now. He seemed just as excited to be on the giving end and wished us the most sincere luck he could have offered. It was very sweet. Benihana now has a very special place in my heart.

The kids all got to go home with some gifts. Aprons, a special rice crispy treat, chopsticks, and these really cool ceramics. Now... how am I going to get them home? Yes, that's always the first thing we think of.
 OK... let's try this again!
Much better. Happy birthday Denny. And Kayla, this is your last day being 7! Tomorrow we will celebrate you and your beautiful life and how HAPPY we are to see you turn 8.

Unfortunately, tomorrow is not quite as open as we wish it would be on the day of her birthday.  We do have a few appointments to get out of the way first, but we will take what time we have and make it fun!  As soon as school gets out, we plan on hitting the zoo. Kayla eyeballed a necklace she has to have from the gift shop. That's all she has asked for, so that's easy. She knows she will have some special gifts once we get home from the money we got sent directly to her. For those of you who are making that possible... THANK YOU!   Ok, onto getting these kids tucked in. It's been a long day and tomorrow will be busy.  Good night all!

Sunday, May 6, 2012

Early Mother's Day

Happy Early Mother's Day to me! Wow, what a fun day today here at the Target House. Just what a lot of us mom's here needed. I had fun getting my nails painted (as bright as possible). There is nothing like bright polish to make you feel a little happier.  The decorations were soooo pretty. I wish now that I had taken pictures! All of the tables had table cloths in shades of pink. There were tall silver vases filled with cherry blossoms in the center of the tables. Pink paper flower decorations hung from the ceiling.  There were tables set up where ladies from Pixi were doing make-up. About 5 or 6 stylists came to do hair. They had a chair massage table set up (now I'm kicking myself that I didn't wait to have that treatment!). There were two long folding tables set up with 4 ladies giving manicures. It was very fun. Everyone was happy and laughing and having a wonderful time. It was so good to see these mommies getting pampered. I have to say, it was so strange being on the other end though.  Part of me felt like jumping in. It was great though. Really such a treat.  I will remember this special day since Kayla will be inpatient and having her "day of rest" on the real Mother's Day.

After the pampering was complete, we hung out for a while with friends waiting for Dinner. It was another really hot day so we dipped in and out between the 90 degree sunshine and the blasting A/C from inside. At 5:00pm we headed on over to T2 for a wonderful Mother's Day dinner. It was so nice seeing all of these mom's all dolled up! I have to imagine this is how we would all look if we were in "normal" circumstances meeting up. You know, in real life.  A few of us were laughing about that saying, "take a mental picture now... I will not look like this again here".   Kayla was not feeling good, so she and Denny headed back up to our room early. Anthony stayed and put together a lovely Mother's Day gift bag for me which was so so sweet!  I just am so grateful that they took the time to honor us mom's in this way. It brings me to tears just typing about it. What a wonderful thing it is to volunteer!
Inside of the bag I found my special Mother's day goodies. There were lavender bath salts inside of 3 bags, eye shadow and lip balm, a card and a key necklace. Anthony was most excited about his key to my heart necklace. So was I.  I love it!  (and yes, his card is signed Love, Puppy) I told Kayla that this is what happens when big sis isn't there to help! She just giggled.

Denny is finished with his first hat! Once he gets done with that the girls have a throw blanket for Kayla that he will be working on.  It will come in handy next winter. Very special since it's from Dad!! :) Denny, we are very proud of you!

Friday, May 4, 2012

MRI Results are in

MRI results are both in and clear! Not that we had any indications that they would be otherwise, but in the world of cancer, anything is possible. We've seen it all here. Clear MRI's mean that nothing has changed and Kayla is clear to continue her 3rd round of Chemo. This morning started at the crack of dawn, 6:45 am (which to me, is the middle of the night). Everyone knows I am not a not a morning person. First up was Kayla's Brain MRI. Then she was off to Physical Therapy. B clinic was running late so we missed Occupational Therapy. It was all good though because that was when we happily heard the news about Kayla's MRI's. We then went over to procedures and got ready for Kayla to get her sleepy medicine so she could have her painful Lumbar Puncture.

We had a very nice male nurse who said that before coming to St. Jude he almost worked in the PICU at UCSF! Small world huh? We told him all about our experience there and how as scary as the situation was, we loved the PICU because of the nurses. They were there at one of the scariest and most uncertain times of our lives! We will never forget their amazing love and care. Emily, we love you girl!!!! Thank you again for being so wonderful in such a dark time. We will never forget it.

Kayla told Anthony that when he's 7, he will have to have to have his BP checked, Oxygen checked, get sleepy medicine & have a needle in his back. Aj's eyes got HUGE. And then....

You can imagine the explanation that followed from us. Luckily, he is at that age where he turns it off as quickly as he turns it on.

 "All good now"

We were free to go and finally enjoy our only weekend off from the hospital before it all starts over again. If the heat would go down a touch we could go out more, but it's scorching out. Not humid at all today really just HOT. So, Denny & Kayla are off to their Knitting class. I hear Den will be working on a blanket now. Kayla's back is really sore from the LP (to be expected!) Ouchie. :(  No bathing tonight so mommy will give Kayla a nice sponge bath. Just so glad it's the weekend and we have zero plans. Our friend Connor will be starting his 3rd round tomorrow. I am so grateful for my friendship with his mommy Laurie. It's nice to have someone to be able to literally walk through this journey with. 
Off to knitting and preparing for the AC us "non-chemo people" (as Kayla calls us) enjoy!!!