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!

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!

*Scanxiety-  

(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

Day + 8

ONE MORE ROUND TO GO!

 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!!!!

                     

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.

http://www.facebook.com/CuringKaylaRose 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

 

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.

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. 

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!!!