tag:blogger.com,1999:blog-75880324951134594502024-02-18T17:34:46.299-08:00Kayla Rose - The true story of how cancer saved their familyThis is the story of a girl named Kayla who at 7 1/2 was diagnosed with a cancerous tumor in her brain called Medulloblastoma.
"You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives. " Genesis 50:20Kayla Rose's Mommyhttp://www.blogger.com/profile/03248768905832110815noreply@blogger.comBlogger231125tag:blogger.com,1999:blog-7588032495113459450.post-23784949131780957232016-09-06T22:17:00.001-07:002016-09-06T22:17:56.441-07:00September 2016- long over due update Ok. I knew it was a long time since I blogged, but I had <i>no</i> idea it had been this long!<br />
<br />
I don't know how I could stay away from the keys this long. I apologize. It's been a tough year for this momma. So let me try and catch you up a bit.<br />
<br />
Kayla. How is Kayla doing? She is doing great! Aside from the hormones she is going through (which she hates) she is a very happy 7th grader. 7th grade!!! Wow. I don't even know how 5 years has gone this fast. Her growth is very slow still but we managed to grow a whole shoe size finally this past year which is sooooo awesome! She is still very small compared to her peers but not the only tiny girl in her school which helps. This past year we have been growing and nourishing incredible friendships which have healed our souls like you can't imagine. I don't know what I would do with out these incredible people in my life.<br />
<br />
In November, we will head back to St Jude for Kayla's 5 year check
up! This is where you are considered "in remission". It is honestly a
word that is kind of meaningless to those who have battled cancer. Don't cringe. Let me explain. I am not sure
who they comfort really. Up until 5 years after diagnosis... if your scans remain clear,
you are "cancer free", "stable", or "N.E.D - no evidence of disease".
It's a very scary time each and every time b/c you just never know when
or if something new might rear it's ugly head. Treating cancer can <i>cause</i>
cancer. Isn't that the most terrible thing ever??? I hate it. It's
something I never knew before this.<br />
<br />
Back in May, when
Kayla and I were at St Jude, we had a bit of a startle when a freckle
showed up in the back of her eye ball during her visit with her Eye
Surgeon. There it was. This unpigmented freckle. It was flat and round
and benign. But this is now something that must be watched and measured
every 3 months (we will do this here locally at UCSF and results will be
shared with St. Jude). Other than that, Kayla is a very normal moody
12 year old girl. And I love it.<br />
<br />
Anthony just turned
9. NINE. I can't believe it. He is a sweetie who never misses a night of
hugging me and telling me how much he loves me. The day before his
birthday, he cracked us all up showing up to school in a suit. "It's to
celebrate my last day being 8". He's a hoot. That's for sure.<br />
<br />
Denny
got through his first semester at school with straight A's. He had the
most incredible teacher who loved him as much as he loved her. There is
no school during the summer, so it was a nice break from the books. But
there is no rest for Den. He was hired at Novato Community hospital
where he worked A LOT while not at school. He works in the ER checking
patients in, the Lab registering patients for work to be done, and in
the main hospital as the main switch board operator. The experience with
insurance and processing insurance has been a huge help with all of the
things we have been through with me which is a whole other long story.
Well, maybe not so bad. I can attempt to summarize. So now den is back
to school (got only one problem wrong on his first test this semester...
he's a rock star student!). He's working weekends to keep his position
at the hospital. Very happy about this. It's hard to get a hospital job
these days. Very hard for new grads so this will be a big plus when he finally graduates!<br />
<br />
So,
we know that stress can do a number to you. Yeah. Well, my stress
finally set off a major bomb in my body. Several really. November 2014, I
started to have some funky blood results come back. Nothing major, but
not normal. We watched it and I continued to just go about life. I
didn't really think too much about it or worry. Then in March... BAM.
Ok Annie. Your turn. Have fun with this! March (6 months ago) I had the
most horrific gastric attack. It was bad. I mean b.a.d. It was so
incredibly scary. The pain reminded me of labor. It came on so fast and
hard and caused me to be so nauseous. Once that started, it didn't stop.
Unlike anything I have ever had before. After hours and hours of it, we
decided to head to the ER. I was admitted (which ended up being 3
nights) and they started me on an IV and pain meds. They sent me in for a
CT scan for my stomach. I did have some pretty upset upper intestinal
areas <i>but... </i>you know when you hear of them looking for one thing
but finding another? Yep... that's what happened. The CT showed that I
have severe aortic stenosis. It's severe narrowing to the blood supply
that comes off of my heart. It's <u><i>not</i></u> in my valve. It's in my actual
aorta which is much more rare. Long story short, 6 months later and I
now have 4 specialists at UCSF. Gastro, Rheumatoid, Hepatology, and a vascular surgeon. I have had 6 MRI's, two more CT's, and
an ultrasound. For sure there is something Auto immune going on. They
have ruled out every one of the most common ones. But the Stenosis is
the immediate thing we need to address. So, I have an awesome Vascular
Surgeon there, Dr. Hirimoto. She has come up with a plan. Surgery. I
am scheduled to go in 4 weeks from today, Oct. 4th. She says she is
clearing the board for me that day. It's a long one. I also have
stenosis in the renal artery (the one that goes from the aorta to my left kidney). So
the plan is to go in and correct that as well. They will have to
temporarily cut off the blood supply to my kidneys one at a time during
the procedure. The portion of my aorta that is stenosed will be replaced with something man made. The hardest part is where the stenosis is located. It's right where it branches off to your major lower organs. So they will have to open me up and move my organs to the side to get to the area. I am told to plan to be in the ICU for about a week.
Then home for 4-6 weeks to recover. The biggest risk is to my kidneys.
So if you pray, please please do so!<br />
<br />
Kayla is scared
and mad. She keeps saying that it isn't fair that we have to go through
more. That we have been through enough. The thing that makes me upset
is that they can't link the gastro attacks with this. I have been back
to the ER more times than I can imagine with the pain and vomiting. It
caused me to miss so many days off at work. I did the diet elimination
thing. I even got attacks when I didn't eat anything at all. Believe
me... they have tested me for EVERYTHING. The gastro specialist quickly ruled food out as did we. It has nothing to do with what I eat. I still have a feeling that
fixing the blood flow will help with the stomach too. Our bodies are
crazy! The good news is that tomorrow will be 8 weeks since I had my
last attack. Seriously the longest I have gone since March. There was
one point where I went 6 weeks and then BAM. I got one just about once a
week for months. Even spend a night in the ER while at Kayla's check up in Memphis. Not a good story. Nope. So hopefully that is behind me. Fingers and toes are crossed
over here. Still we will need to figure out what the heck is going on
with me rheumatology related. And there is more but I won't go on and on
and bore you with my stuff. I am incredibly anxious to get this over
with! They think I have had it my whole life and that I have no idea how
good I will feel once I am healed. I can't wait to feel that for
myself! I just need to be well before Kayla's trip back to St Jude in
November. (it's right after thanksgiving)<br />
<br />
Ok, I will
update soon. I won't go this long. I really had no idea... time flies
when your having fun and even when you aren't apparently!<br />
<br />
Love you all! Go Kayla Go!!!!!<br />
<br />
<br />
<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrVp336wLPBN7RmJEIXOIZ86kPhpp0nb3EsHNAscTx6IdH-TDgrwbGAWKZ_SYQLT7I9AbFWz2k6kU8t4I2ML0LMjgOlNKcWHfG4VZ3kPjhcrbpiZJcNg1RGs0-3XTKULwrmT100sPsIerq/s1600/IMG_3791.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrVp336wLPBN7RmJEIXOIZ86kPhpp0nb3EsHNAscTx6IdH-TDgrwbGAWKZ_SYQLT7I9AbFWz2k6kU8t4I2ML0LMjgOlNKcWHfG4VZ3kPjhcrbpiZJcNg1RGs0-3XTKULwrmT100sPsIerq/s400/IMG_3791.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Camp Okizu pick up July 2016</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjt3ht_cokwnECPUHqDwm2cJGCYraowK79cujpcbDYCfrwXDwx5dRRZbI4_K31q71P1ao35a36IIcrmeyUH_93aDGvhF4KonznTLTw81dvG4hJph-4ux_VTbkW8QLmoqi8_ekcYS8QqnWB5/s1600/IMG_3865.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjt3ht_cokwnECPUHqDwm2cJGCYraowK79cujpcbDYCfrwXDwx5dRRZbI4_K31q71P1ao35a36IIcrmeyUH_93aDGvhF4KonznTLTw81dvG4hJph-4ux_VTbkW8QLmoqi8_ekcYS8QqnWB5/s400/IMG_3865.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Camping (year 2) Lake Morning Star Kayla and Mackenzie after a mud fight <3</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgxsesizlD8HyfsV1aVNdM7_g2gbgOC9_SDGVi4OOyz7qWrTsRYqKZkUP-NRWefnrVXDgHUUl3oj9hejVN61siuY3RNjSaaZOV2qO1BaSATNES8YwzHcZA5ky28Z26UceFXz8BxWsLrWIF/s1600/IMG_3893.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgxsesizlD8HyfsV1aVNdM7_g2gbgOC9_SDGVi4OOyz7qWrTsRYqKZkUP-NRWefnrVXDgHUUl3oj9hejVN61siuY3RNjSaaZOV2qO1BaSATNES8YwzHcZA5ky28Z26UceFXz8BxWsLrWIF/s400/IMG_3893.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Last morning camping</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiN_SDThY_a2Bk5OzvUZajkgTH6rfiKaDt7mkuzOPdsJfVib0tSBVwTsb7BpAr3n3ukRdWnrKDNuFaud8XzLlu0TBIUwFchE8Mog1ADDZqihXsD-udm8IGgP1S_vtk57r4sqJ1IXAyWWBEp/s1600/IMG_3936.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiN_SDThY_a2Bk5OzvUZajkgTH6rfiKaDt7mkuzOPdsJfVib0tSBVwTsb7BpAr3n3ukRdWnrKDNuFaud8XzLlu0TBIUwFchE8Mog1ADDZqihXsD-udm8IGgP1S_vtk57r4sqJ1IXAyWWBEp/s400/IMG_3936.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Enjoying lunch in San Fran after one of my ultrasound (they are the best helpers!!!)</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJIdirzucXhD3nPOIqrPKhZkydY82Z-d1WqgH9UNRVElpqS5ZGzImK4vPqFAHQzZByyYmhQbrO-cLSGEpr5nXeMlsUtsodOIwI6bB7evEdLxDiFMTVioA0oJiQ60p1hW3hAjT-Z3l3WhMW/s1600/IMG_4135.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJIdirzucXhD3nPOIqrPKhZkydY82Z-d1WqgH9UNRVElpqS5ZGzImK4vPqFAHQzZByyYmhQbrO-cLSGEpr5nXeMlsUtsodOIwI6bB7evEdLxDiFMTVioA0oJiQ60p1hW3hAjT-Z3l3WhMW/s400/IMG_4135.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Celebrating Jack's birthday and years of continued friendships!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfsuubGu23XuTkh1wfZ9F_xExMjYGUJTJwqkEtgz6KPv5yDfveZlTgbx36i1Xhqmh6O3kmLo_Gok8bmeT05hNHNf-i3MGIFz9xiulSMH8S5kDHE5_ZkYkOKbXzOp16Wv5O9DCyaMXoAd5M/s1600/IMG_4194.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfsuubGu23XuTkh1wfZ9F_xExMjYGUJTJwqkEtgz6KPv5yDfveZlTgbx36i1Xhqmh6O3kmLo_Gok8bmeT05hNHNf-i3MGIFz9xiulSMH8S5kDHE5_ZkYkOKbXzOp16Wv5O9DCyaMXoAd5M/s400/IMG_4194.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">At school dressed to the 9's... last day of being 8. God I love him!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_8x5Oqa462BpPHnxVCdrcCR1SQoRh_t4kx1vGZmyiGEI-skobbC3ZecswxU9Ul-pWBNuHkK8TxZNvI_17MlDKwvSoPDG-ZV1JZQhyphenhyphen_nGCCA2Y8igxXDJcgWUe6uv1llvA7gbnhc18Np55/s1600/IMG_4206.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_8x5Oqa462BpPHnxVCdrcCR1SQoRh_t4kx1vGZmyiGEI-skobbC3ZecswxU9Ul-pWBNuHkK8TxZNvI_17MlDKwvSoPDG-ZV1JZQhyphenhyphen_nGCCA2Y8igxXDJcgWUe6uv1llvA7gbnhc18Np55/s400/IMG_4206.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">On our way to the Giants game for the big 9!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixbAZvfDzUysXtIOJSJBjBjXLtk9iFERYBouclpu47oyu6mlhSw6o59fSctHbIj3S9-RfVquAsY2EQXveXyKepmTLoKVIJe3A-MFx_GTHQn_gelDBthl912GnQtzemsmGrtIpnLCfL7vBo/s1600/IMG_4214.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixbAZvfDzUysXtIOJSJBjBjXLtk9iFERYBouclpu47oyu6mlhSw6o59fSctHbIj3S9-RfVquAsY2EQXveXyKepmTLoKVIJe3A-MFx_GTHQn_gelDBthl912GnQtzemsmGrtIpnLCfL7vBo/s400/IMG_4214.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Pre-Game luxury thanks to St Jude night at the park. They all caught balls during the warm-ups! </td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg621ll_WUWIZ3vLk9NOWEeb56yXq6bmVFt-aoCtOkMmgyC0NByjNcxCimTrrrpcYjb37qiz25qrKKn9T65GFnVgGbZYxwbtwhof-6XRUaRXi5OBo0MO-6rHnid3BGjKjoY94_eaQfai7AC/s1600/IMG_4261.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg621ll_WUWIZ3vLk9NOWEeb56yXq6bmVFt-aoCtOkMmgyC0NByjNcxCimTrrrpcYjb37qiz25qrKKn9T65GFnVgGbZYxwbtwhof-6XRUaRXi5OBo0MO-6rHnid3BGjKjoY94_eaQfai7AC/s400/IMG_4261.jpg" width="300" /></a></div>
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<tr><td class="tr-caption" style="text-align: center;">Dibbs at the game. He LOOOOVES his birthday!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgljy1GiCQuib0l_7X8Zmf9DNcCGIlSAOTEI-ahAym8OIea5Zuglav3rQ980Sx_PY1FmRuxXGhGYPqnQvt6koB8LruqUQsOwqni09lSH55KXj4apYvlIEDiINLSC1LXqfmbSW3KCbCXttEW/s1600/IMG_4311.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgljy1GiCQuib0l_7X8Zmf9DNcCGIlSAOTEI-ahAym8OIea5Zuglav3rQ980Sx_PY1FmRuxXGhGYPqnQvt6koB8LruqUQsOwqni09lSH55KXj4apYvlIEDiINLSC1LXqfmbSW3KCbCXttEW/s400/IMG_4311.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Happy 9th Anthony! </td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgCr86BQsBulMFPQIMiFX1EZnnmlzSXSCyA5lEc3yvvp6Wjcfp3zYM5NcjdsIRMviH5TXwWXjVsUciNDRr2uk1G0fn1h2_ZzgMpxS_zN6-omJxQTShQXlob_-plG9zI_NoGDdvkwZ-TYX-/s1600/IMG_4227.jpg" imageanchor="1"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgCr86BQsBulMFPQIMiFX1EZnnmlzSXSCyA5lEc3yvvp6Wjcfp3zYM5NcjdsIRMviH5TXwWXjVsUciNDRr2uk1G0fn1h2_ZzgMpxS_zN6-omJxQTShQXlob_-plG9zI_NoGDdvkwZ-TYX-/s400/IMG_4227.jpg" width="300" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxihlqvDtcn0P5Ogtsc0xgxmL-HW6XG2_piOT5USXN1Tljo8iqRmqzx8LV3t0m-jhObyf_yIkYEqND7alSA8WlTs_zUySQgImHnZkzvlnDFnvewSxYFexkPK5s_YI7k60yZ2io0eFu_7Ag/s1600/IMG_4254.jpg" imageanchor="1"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxihlqvDtcn0P5Ogtsc0xgxmL-HW6XG2_piOT5USXN1Tljo8iqRmqzx8LV3t0m-jhObyf_yIkYEqND7alSA8WlTs_zUySQgImHnZkzvlnDFnvewSxYFexkPK5s_YI7k60yZ2io0eFu_7Ag/s400/IMG_4254.jpg" width="300" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRFLpyzCJceaPVmYV51zmOgIHW7pmd_h1OIl1Z5O3zQWHwtm21RoXH4-sR59ZLKUJDbzxcFuiNrVrGiQlHarGG7VWBkdQqGQcJd18ULoXDWPMws9RQ-KgZE6MOQ7csRFF1VVkJiM2mMDoS/s1600/IMG_4322.jpg" imageanchor="1"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRFLpyzCJceaPVmYV51zmOgIHW7pmd_h1OIl1Z5O3zQWHwtm21RoXH4-sR59ZLKUJDbzxcFuiNrVrGiQlHarGG7VWBkdQqGQcJd18ULoXDWPMws9RQ-KgZE6MOQ7csRFF1VVkJiM2mMDoS/s400/IMG_4322.jpg" width="300" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgl1fxZkeWCwvtpk6ZT0mLn9lsF6xmIF5qOT7jZpb4uh_AWuYG23otWyFrrVjp9noQwLtbdUy1FqUE7fqwVEE01Lg7hDogXjjAo81CaTMquMvHDL4ivMiAP6Uvk2U9qwyyslJiEGVyWtxtp/s1600/IMG_4363.jpg" imageanchor="1"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgl1fxZkeWCwvtpk6ZT0mLn9lsF6xmIF5qOT7jZpb4uh_AWuYG23otWyFrrVjp9noQwLtbdUy1FqUE7fqwVEE01Lg7hDogXjjAo81CaTMquMvHDL4ivMiAP6Uvk2U9qwyyslJiEGVyWtxtp/s400/IMG_4363.jpg" width="300" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7tco4Ufn0sHDFlIaCwyncjBYVwAdXdlk4EkorsX0JmhqP1akZvnWIqiHDCS95A52x09-r9N3Nd54n7qOr9s8NgJZFW-I6SDMIwNdzZKdxh2rTU3roVe2BLbkCZaVDTTTqvn9wKOH9CWz_/s1600/IMG_4415.JPG" imageanchor="1"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7tco4Ufn0sHDFlIaCwyncjBYVwAdXdlk4EkorsX0JmhqP1akZvnWIqiHDCS95A52x09-r9N3Nd54n7qOr9s8NgJZFW-I6SDMIwNdzZKdxh2rTU3roVe2BLbkCZaVDTTTqvn9wKOH9CWz_/s400/IMG_4415.JPG" width="400" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGgLR-6PCK-nDrwNvZsCgG-EeBip_kCJDZeMnCr-hj-pLum-SHvwWoknMF8jShmCiVLov-H5hYv-BjgGWXdXdgWMpWM-8WW86oMc7ziWPttFek8vvATFKj4Q5G5QW89d7yLCbRJC8FKmGf/s1600/IMG_4419.jpg" imageanchor="1"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGgLR-6PCK-nDrwNvZsCgG-EeBip_kCJDZeMnCr-hj-pLum-SHvwWoknMF8jShmCiVLov-H5hYv-BjgGWXdXdgWMpWM-8WW86oMc7ziWPttFek8vvATFKj4Q5G5QW89d7yLCbRJC8FKmGf/s400/IMG_4419.jpg" width="300" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJm3ZXUY5yMg6UqzOeSbhEAMUh_qGde9J82fUrLfeBCA3keqFEE0m9pXuNL9nIxo_U4ncGklcv5oISn9AcuNaeCK_jevNGCo-dqP_NYV2NBThEorO_fKOA1FuMYtWGXclr2YaGyMzUUag4/s1600/IMG_4445.JPG" imageanchor="1"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJm3ZXUY5yMg6UqzOeSbhEAMUh_qGde9J82fUrLfeBCA3keqFEE0m9pXuNL9nIxo_U4ncGklcv5oISn9AcuNaeCK_jevNGCo-dqP_NYV2NBThEorO_fKOA1FuMYtWGXclr2YaGyMzUUag4/s400/IMG_4445.JPG" width="300" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3TA_YhWgR2JMGbTJcL3ye0hYLa9yluTYZ01440p6qmrOXV7BamBLRrEIVgxtbbpbZE566hIa27d2zwcvPG3VHNJx_MQzsgM3Q0Cm38nAjFMAvKEeG8kfv9DbOOVWkkHkBMl9laolt_1Vb/s1600/IMG_3834.jpg" imageanchor="1"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3TA_YhWgR2JMGbTJcL3ye0hYLa9yluTYZ01440p6qmrOXV7BamBLRrEIVgxtbbpbZE566hIa27d2zwcvPG3VHNJx_MQzsgM3Q0Cm38nAjFMAvKEeG8kfv9DbOOVWkkHkBMl9laolt_1Vb/s400/IMG_3834.jpg" width="400" /></a><br />
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Good night all... <3Kayla Rose's Mommyhttp://www.blogger.com/profile/03248768905832110815noreply@blogger.com1tag:blogger.com,1999:blog-7588032495113459450.post-2038650804881845322015-09-25T21:06:00.001-07:002015-09-25T21:59:38.442-07:00In an instant everything can change<div class="separator" style="clear: both; text-align: center;">
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Kayla and Hollis (who is famous around her for her "<a href="http://jugglingforjude.com/" target="_blank">Juggling for Jude</a>" campaign)</div>
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"She looks so healthy. She's growing. She looks amazing!" That's what people say when they look at Kayla now, almost 4 years out from diagnosis. It's hard not to think that something new could be brewing behind the scenes...... It's something I always push as far out of my mind as possible to keep me sane and happy.<br />
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For about the past month, Kayla has been complaining a lot about pains in her legs. Of course, I figured they are just growing pains. She's 11. Everyday, the same complaints... but they started to get worse. I would catch her walking on her tip - toe to avoid putting her heel down because it hurt. Each day, I kept telling her it <i>must</i> be growing pains. Kayla's tears would flow because there was no quick solution to her pain. My concern was starting to grow as well, but I tried to push it into the back of my mind. On Wednesday this week, Kayla came home from school and couldn't use her left hand. Ok... Now I'm really concerned. I called St. Jude and they advised me to get her in to see an Orthopedic Doctor here locally since our next appointment there isn't until November. Tomorrow. I'll deal with it tomorrow. <br />
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The next day (yesterday) I received a copy of an email written from one of Kayla's IEP specialist (who ADORES Kayla). The email was sent out to all of her teachers.<br />
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Here is what it said:<br />
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<i>Hi,<br />I met with Kayla today and she is reporting that she is having pain throughout her body. It started in her legs and has recently moved to her arms and hands. At the end of the day yesterday she couldn't even move her left hand. If possible print out notes for Kayla so she doesn't have to write or print a peers notes for her to have. Please allow her to use the computer to hand in writing assignments. If you have any questions, I would be happy to meet with you or answer them through phone or email. Thank you all for taking Kayla's needs into consideration</i><br />
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That stopped me dead in my tracks. My breathing became labored and my anxiety heightened. There is something about reading or hearing from her specialists that makes my concerns become realized. Until then I can just push it off and blame it on something... she's tired, she didn't eat enough, she wants attention, hormones etc. etc... The lump in my throat grew as I drove to work. Luckily my first client works as a nurse in a local ER. She reminded me that if I call an orthopedic doc myself it will likely take weeks to get in, but when her pediatrician calls them and marks it urgent things happen. Duh! I forgot about that. <br />
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So, right before I called her doctor, my cellphone rang. It was the school. Oh no!!! Kayla was in the office again because she was in SO much pain. I talked to her on the phone and she told me it was so intense that she wanted to come home. So unlike her<i>. </i>She never wants to leave school. This must be bad. <br />
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Of course, I immediately call Dr. Yamaguchi (God I <i>LOVE</i> that man!!) I knew they were about to go on break for lunch so I asked that he call me at his earliest convenience. My heart was pounding. I couldn't think straight. I felt nauseous. Finally the phone rang, "Pick her up and bring her straight here. I am working on getting her an appointment today with an orthopedic doctor". "Ok<i>. Breathe",</i> I tell myself over and over. I put out an alert to my village... I don't know what I would do without my amazing friends. The support and offers to drive us start pouring in and I remind myself how lucky I am. I call Denny as I'm walking into the office to let him know what's going on and he starts to spin. I can tell. He is already trying to calm me down... but I can barely hear him through the pounding sound of my heart.<br />
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We are taken right back. Kayla is measured and weighed. <i>She has grown 1 3/4" since May... amazing. </i>Ok, so maybe it <i>is</i> growing pains? Dr Y walks in with a smile that is so kind, his energy mellow, his exam filled with compassion and thoroughness. Kayla had many tender areas: her wrist, both legs in many spots, her hip. During the exam, I get a call from the Orthopedic receptionist telling me that they can see her in 45 minutes. <i>Perfect</i>!! I'm taking deep breaths and saying a thank you prayer. The next thing I know, I hear Dr. Yamaguchi say, "Please excuse me and your mom for a minute while we chat". Kayla looks a little concerned but follows the rules, as <i>always,</i> and waits for us patiently. We walk into another room and both took a seat. "Something is for sure going on. Lets just hope it's a fracture, growing pains, or something we can fix and not ---" I interrupt him, "Osteosarcoma". He freezes and looks into my eyes with empathy. He says he is concerned. I tell him with honesty that I am SO scared... and the tears start to flow. We hug and I promise to let him know how the Ortho appointment goes. He loves her so much... We all do.<br />
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On the drive back, Kayla was sitting behind me and I couldn't hold back the tears no matter how hard I tried. I put on some music to make it less obvious. I silently sobbed and felt like throwing up the whole way home. My mind was swirling and I started to really panic. "What if I'm going to be packing bags back to St. Jude tomorrow? What about Denny? He is supposed to start Nursing School in January? " I think of Kayla's friend Angiel, who we love and adore from St. Jude, she had Osteo. It's a HORRIBLE kind of cancer (and one of the top ones they see in re-occurrence from treating Kayla's type of cancer). I remember Angiel went through 21 rounds of Chemotherapy and was living there at the Target House for 2 years when we met. Many kids end up with amputations. It's something I quickly shove to the back of my mind. Why is this drive taking <i>so damn</i> long?!?! I get a call from my friend Rebekah insisting on driving us to the apt. I figure this is a smart move and I could really use a friend there with me. I am really in no shape to be driving, it's an easy yes. Once home, I promptly take my Ativan and my breathing begins to slow down... I start to be able to wrap my head around all of this and calm down. Kayla looks at my face when we get out of the car and says, "Oh no... you are
worried.... " Crap. I couldn't hide it like I did before, she knows too
much, she knows my expressions at this stage all too well. I promised
her we will deal with whatever it might be, but we are hoping it's
nothing major. <br />
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Beck arrives and we drive a couple miles to Dr. Solomon's office. My sweet friend brought Peanut M&M's. Perfect distraction. Before we know it, we are called back. I asked to talk to the doctor privately before he sees Kayla. Dr. S and his co-worker are very sweet. Kayla shares an M&M with each of them. When alone, I explain Kayla's past history with Medulloblastoma, Surgery, 31 rounds of Radiation to her full brain and spine, and chemotherapy. Then I'm asked, "How do you want us to handle giving you any information that we might find?" I get a HUGE lump in my throat and barely choke out, "Give it to us straight, Kayla likes the truth." I can't believe I just said that out loud. It's like a horrible nightmare. I just want to run from this office, but I don't. Once he starts examining her, he tells me he <i>believes</i> that it is quite possibly the painful result after such little growth for so long, and the fact that she just had this big jump that it could be the nerves and tendons that are being stretched beyond the normal capacity. Osteo is more of a localized pain in one spot and she has many sore places. This makes sense and so I take a deep breath. I don't think to challenge him or demand an X-Ray because I want so badly to believe he is 100% correct. Of course if it worsens or doesn't seem to go away, we are to call him immediately. I meet Kayla over by the sticker box. Once the door closes she looks at me with frustration and says, "Mom, I don't buy it. This is <u>not</u> growing pains!!!" Oh lordy. I didn't expect to hear that from her. I ask her if she wants to talk with him more or demand tests? She tells me no. And she is adamant that we just go.<br />
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When we pull up to our house, Carolyn and my mom are crying but quickly pull it
together for Kayla. Maggie and Audrey shriek and hug Kayla and are so grateful for the news.<br />
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For now, we will wait and see if this worsens. I for sure, want St. Jude to check into this as well. It's just another day in the life of a cancer mom.<br />
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Yesterday was another hard reminder to me as to how life can change in the blink of an eye. One minute you are folding laundry or planning the next nights dinner, and the next you or your child could be fighting for their life. Just because you might be "cancer free" <i>or "</i>in remission after 5 years being cancer free", It doesn't mean that you might not be suffering severe after effects, or a secondary cancer from treating the original cancer. So we just continue to<i> live</i> as normally as possible and stay positive and laugh while we can!<br />
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September is Childhood Cancer Awareness month. It's always a hard month for me full of reminders... Have you taken the opportunity to share how important it is to #GO GOLD or know that Pediatric Cancer research <b><u><i>only</i></u></b> receives<b> 4% of government funding</b>? Please help spread this word.<br />
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Please share my blog, tell a stranger, watch the short documentary that this amazing childhood cancer survivor made <a href="http://www.thetruth365.org/">www.thetruth365.org</a> or donate to St. Jude. You can <a href="http://fundraising.stjude.org/site/TR/Walk/Walk?px=2263299&pg=personal&fr_id=40392" target="_blank">donate</a> directly to our 3rd annual walk (which happened at the San Francisco Zoo last Saturday).<br />
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Our Amazing team who won't stop fighting!</h3>
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Maggie, Kayla, Audrey, Lindsey </h4>
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Kayla and Kapri - Both local Medulloblastoma fighters!</h2>
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SO grateful Donna and her girls were able to walk with us this year (it's <i>only</i> a 6 hour drive!) I love you Donna!!! You are amazing <3 </h3>
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<h3 style="text-align: center;">
6th grade homework</h3>
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<h3 style="text-align: center;">
Glasses off, Hearing Aids out, Snuggling with "My Meow" - KayRo OUT! </h3>
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<br />Kayla Rose's Mommyhttp://www.blogger.com/profile/03248768905832110815noreply@blogger.com13tag:blogger.com,1999:blog-7588032495113459450.post-88570547239087339102014-11-11T09:21:00.000-08:002014-11-11T09:21:00.834-08:00Three Years Ago <div class="separator" style="clear: both; text-align: center;">
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Three years ago on 11/11/11 a simple MRI revealed a mass on my 7 1/2 year old's brain. Three years ago. Wow!!! I can't believe how much we have all been through in that amount of time. This year, we will again be participating in the St. Jude Give Thanks Walk. It will be held at the San Francisco zoo. Last year, we were blessed with not only incredible family and friends who walked and fundraised with us, but perfect weather to boot!<br />
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This year, even more friends are walking and supporting us which is <u>SO</u> exciting!!!!!!<br />
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As of today we have:<br />
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<span style="background-color: white; font-family: Helvetica, Arial, sans-serif; font-size: 13px;">Team members: 20 </span><br style="font-family: Helvetica, Arial, sans-serif; font-size: 13px;" /><span style="background-color: white; font-family: Helvetica, Arial, sans-serif; font-size: 13px;">Total team amount raised: $6,982.00 </span><br style="font-family: Helvetica, Arial, sans-serif; font-size: 13px;" /><span style="background-color: white; font-family: Helvetica, Arial, sans-serif; font-size: 13px;">Current <u>team</u> ranking: 2</span><br />
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<span style="background-color: white; font-family: Helvetica, Arial, sans-serif;">That's right! #2!!!! Whoooohooo!!! </span><br />
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Your individual progress</h3>
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$2,366.00</div>
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I HAVE RAISED</div>
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$3,000.00</div>
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<span id="msg_cat_progress_my_goal">MY GOAL</span> <span id="progress-change-goal-link">(<a href="" id="msg_cat_change_goal_link" style="color: #1b94fb; font-size: 1.15em; font-weight: bold; text-transform: none;">change</a>)</span></div>
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78%</div>
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11</div>
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DAYS UNTIL EVENT</div>
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<span style="font-family: Open Sans, Helvetica, sans-serif;"><span style="background-color: white; font-size: 14px; line-height: 17px;">We have 11 Days until we walk again for Kayla and all of the kids who will benefit from St. Jude's research to end Childhood Cancer. </span></span><div>
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<span style="font-family: Open Sans, Helvetica, sans-serif;"><span style="background-color: white; font-size: 14px; line-height: 17px;">Since 11 always seems to be our number... I figured today would be a great day to ask for help. If you have $1, $11, $111 etc., please consider donating. Every penny goes directly to St. Jude. <a href="http://fundraising.stjude.org/site/TR/Walk/Walk?px=2263299&pg=personal&fr_id=21030" target="_blank">Click here to Donate </a></span></span></div>
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<span style="font-family: Open Sans, Helvetica, sans-serif;"><span style="background-color: white;"><span style="font-size: 14px; line-height: 17px;">Today, I not only give thanks to the amazing Veterans who protect our country, but to the chemists, doctors and nurses who do so much to try and protect the lives of precious children who should not know this kind of pain. </span></span></span></div>
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Kayla Rose's Mommyhttp://www.blogger.com/profile/03248768905832110815noreply@blogger.com0tag:blogger.com,1999:blog-7588032495113459450.post-78886275225795380122014-11-06T21:52:00.000-08:002014-11-06T21:52:48.525-08:00Back in school :)We made it home! It has been non-stop <i>still</i>. This mixed with work, Anthony, Denny, emails, texts, and a new family diagnosed with a brain tumor..... yep.......(I won't even go into more... you know who you are if you even have the time for me to read this- probably not) my time has been pretty filled up. Blah blah blah... it's not rare..... this WE know, right???<br />
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I just want to say <i><u>THANK YOU</u></i>. THANK YOU!!!!! Thank you to all of you who posted, prayed, lit candles, texted, emailed, and just were plain out there for us. I don't know what I would do without you <i>all</i>. <u>Seriously</u>!!!!!!!!! <br />
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I just wish I could have recored each and every time Kayla was able to express her new vision. It would make each and every one of you who are able to read this sooooooo grateful. Cars were shiny again. She saw birds! Clouds... she even told me that our concrete walkway is beautiful!!! I had no idea just how bad her vision was until after this laser procedure. Only one little girl told her, "to be quiet already. We all know what these things look like". Kayla told me she said to her, "Do you know what it's like to have your sight taken from you and then to be able to see things again? I have never seen more clearly in MY LIFE and I will never forget how wonderful this feels". I am blessed beyond measure tonight. Cherishing the ability to breathe again. My gloves are still up but I am surrounded by so much love that I feel like I am not the only one with gloves up.... we love Kayla. Thank you. THANK YOU. 11/6/14 - five more days. <br />
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I think she is in an <i><u>incredible</u></i> place.... right? Who could ask for anything more for this girl.... XOXO<br />
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<br />Kayla Rose's Mommyhttp://www.blogger.com/profile/03248768905832110815noreply@blogger.com4tag:blogger.com,1999:blog-7588032495113459450.post-8539446739426044512014-11-04T18:21:00.001-08:002014-11-04T18:21:03.048-08:00Day 3- November 4, 2014 RESULTS!!!CUTTING TO THE CHASE... NED!!!!!!! NED. NED. NED. Those words will never ever ever get old. Blessed to hear them at 2 1/2 years out of treatment. So so very blessed. Not taking one letter for granted. THANK YOU GOD!!!!!!!!!<br />
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Ok, Whew. I can finally breathe. It's been a very long day but my sweet girl is tucked into her bed next to me watching Grease on TV. Between Full House last night and Grease tonight, I feel like I might be in a time warp of sorts. I love it. (and thank goodness a LOT of it is above her head still)<br />
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This morning we started in Assessment Triage for more well checks and we rushed off to E Clinic for the much awaited news. I have to admit, this was a new level of nervousness for me. I think it hit me yesterday. Seeing so many people who haven't seen Kayla looking so "herself" in so long made me want to cling to that hope, that memory, that belief that things will only get better from here. The hope that that dagger won't hit my mommy heart again. I woke up at about 1:45am and could not get back to sleep. I was hot. Sweaty. My heart was pounding out of my chest so hard it was as if I was under water and the beating was all I could hear. Just as I woke up I heard Kayla make this odd noise. Kind of like she was about to sneeze breathing in a few deep loud breaths with no sneeze. It scared me more. I wondered what she was dreaming about. Hoping and praying we would have nothing but good news to share today. I took many deep breaths and felt much more ready to face this day. <br />
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E Clinic was short and sweet. It was a little bit of mixed emotions as Dr. Gajjar told me that we need to push for Growth Hormones because she has fallen off of the growth chart. But to me, Kayla has always been small. I know she is probably not much bigger than she was at 7 1/2, but to me, she looks perfect. I took a deep breath and was anxious to hear what her Endocrine Dr. would think about his "urgency"...<br />
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Kayla and I then rushed to get some quick lunch and luckily saw Jenny and Mae in the Kay Cafe. Phoebe seems to be making a little bit of progress which is SUCH great news. Since her stroke, she still has a very rocky uncertain path which is very hard to understand and process. It really is day to day with a lot of these kids. That... we have gotten very used to here. <br />
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Finally, we walked over to Endocrine to get the real scoop on Kayla's growth. She grew almost an inch and gained a little over 1 lb. since her last visit! We will take it!!! So, we got strict orders to keep packing the calories in. Keep up her milk because radiation can make bones dense. Her thyroid seems stable, but I should get that info for sure by tomorrow. Her Endocrine doc said that there is no urgency to push for GH. I couldn't agree more. For now, she can just stay small and healthy!!!! I am very worried about the risks since she has already had cancer. I know that this is very controversial, but for me, I can't get past the possible side effects that it could cause. We will cross that bridge if and when we should ever need to. For now, I am happy to hold off!<br />
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Last but not least, my baby took her eyeballs through a stroll through the car wash! Her eyes got the laser treatment that she has been waiting on pins and needles for! She's still quite dilated hours later, but she says that everything looks so clear and new again. She forgot how beautiful the sky was. All of the little details she was seeing tonight brought tears to my eyes. It's the little things! I am so grateful!!!!!! So grateful she is in the best hands possible. So glad she is mine to hold and hug tonight. <br />
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All dilated and ready to GO!</div>
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To celebrate, we took the shuttle over to the Target House to visit our old stomping grounds. Really, we wanted to see the new DreamWorks room that now replaces the Tiger Woods room. It was INCREDIBLE. What a wonderful addition.<br />
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The projector on the ceiling<br />
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The interactive screen... kayla was waving her arm and the confetti was flying! So cool!!!</div>
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The <i><u>amazing </u></i>Candy-Cane Play Ground</div>
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We couldn't leave without spending at least an hour in the craft room. Kayla made some goodies to bring back to school. She said I could share ONE on here. One is a Christmas present so it will have to be secret. ;)<br />
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Tomorrow our shuttle is set to arrive at 8am to take us to the airport. By this time tomorrow night, we will be home and happy to be bombarded by hugs and purring and so much love. Thank you so much for getting us through this once again. I don't know what I would do without each and every one of you!!!!!!! <br />
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I was talking to someone who works at St. Jude today about the blessings of the "St Jude Perspective". We both agreed that everyone should be able to receive this <u>gift</u>... for surely the world would be a kinder place. Well said. Well said.Kayla Rose's Mommyhttp://www.blogger.com/profile/03248768905832110815noreply@blogger.com2tag:blogger.com,1999:blog-7588032495113459450.post-43890857162487096172014-11-03T18:37:00.002-08:002014-11-03T18:37:13.707-08:00Day 1. Nov 3, 2014It was a busy day here at St. Jude and I am <i>kicking</i> myself for not bringing my pedometer with me! I bet I logged in quite a few steps today running all over this place. I don't see it in my jeans though unfortunately. What? I know it's only been <u>one</u> day, but I was kind of hoping for a miracle. <br />
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Our day started out in Assessment Triage for Kayla's weight, height, blood cultures to be drawn and an IV inserted. We had an incredible nurse who listened to our concerns that the past few times she has had an IV, they inserted the wrong gauge tube. Kayla's veins are so tiny so they always reach for the smaller tube, but that tube doesn't allow enough room to pass the contrast dye through for her MRI. The contrast is crucial so that we get the most accurate picture of her precious brain. This time the nurse nailed it and got it in on the first try! We were laughing so hard because Kayla's height and weight are just about the same... 51.7 lbs and 51.5 inches tall! How funny is that?! <br />
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After A/T we headed on downstairs for Psychology. Normally, they split the 6 hour visit into two days. But, because Dr. Hopper noticed that the only thing we have scheduled on Wednesday is Psychology, he asked if we would be interested in trying to cram it all in today so we could leave earlier on Wednesday. Ummmm, <i><u>YES</u> </i>please! Problem was, travel couldn't reschedule our flight until Dr. H took psych off of our schedule... It was a long 5 hr wait, but Kayla did it! I was at her beck and call bringing her grits & OJ. She did get a quick 30 min break towards the end so we could grab lunch. While Kayla was taking her tests, I snuck over to the gift shop to see what new fun stuff they had. I was so excited to run into Kapri's mom, Becky, and her two other two daughters! It was great to see them. We are going to try and meet up at the Target house tomorrow for some fun after our long days are over. Kayla really wants to give them a tour and show off her old stomping grounds. Because they have a lot of people with them at all times (and the target house only allows 4 people at a time), they are renting a place in Mud Island. I hope Kapri has enough energy to hang tomorrow. Such a sweet girl from Northern Cali fighting the same cancer as Kayla! <br />
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The good news, <strike>no</strike>, <i>GREAT</i> news is that Kayla scored extremely high on her Psychology exam. Not only was she average to high, she improved her score from a year ago which I was told is <i>very</i> rare! How could I be any more proud of my amazing fighter??? Dr. Hopper said, "I bet all of her teachers just love her to pieces!!!" He has <u>no idea</u> how much! And we LOVE them!!!!<br />
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We popped in for a quick squeeze with Miss. Michaela and left another finger print on Kayla's E-Clinic tree that she and her daddy started in August. It sure is growing. We hung with Jackie and Crystal for a few... love them so so much. We passed Lizzie in the hall and she said she is going to see us in E Clinic tomorrow. I think I forgot to mention a little bit about Miss. Lizzie. She was our FAV nurse who worked with Dr. Gajjar. It was Lizzie's kind eyes, gentle spirit & whitty humor I have clung to at each and every MRI result visit. Just having her in the room could calm the most nervous soul. Recently, she made a very big change in her role here at St. Jude. She now works in the "quality of life" department. Yep, hospice for these precious children and their families. As I was wiping tears away when Denny told me about this change in August, I quickly gave a huge sigh of relief when I learned just where she was going. Not only would she be the one person I would want there for us if we ever had to go there, but I am certain she brings that level of comfort to so many others. She is one of a kind.... So, it was great to see her. We all love Lizzie. I look forward to visits ONLY in the hallways, cafeteria, and E-Clinic stalkings....<br />
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Kayla's tree is GROWING!!! </div>
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I placed my " <3 " next to Kayla's blue thumb print. See it?</div>
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Jackie, Kayla & Crystal. Kayla wrote the question of the month on the "famous" E Clinic white board.<br />
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LOVE these amazing ladies!!!</div>
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It was finally time for the big one. The MRI. We walked into the Imaging Center and it was just about empty. I went back with Kayla to help her change out of her clothes and put her hospital gown on. Minutes seem like hours while she was back there, but today I was happily distracted seeing all of the sweet posters, messages of support and even a video from kayla's class on Facebook. You all are amazing and we love you!!!! Thank you for keeping us lifted during an always very nerve wracking time. <br />
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When I went back in to help Kayla get dressed, she asked me something that <i>literally</i> knocked the wind out of me. She said, "Mom, what would happen if I relapse?" I was speechless for what seemed like an eternity when I finally just grabbed her and sobbed into her hair. I told her we won't worry about that because that isn't going to happen. She was crying and hugging me so tightly and telling me that she has always wanted to ask me, but was afraid of the answer. I didn't have the most perfect answer, but it was all I could get out. It's a word I despise. I hate it with every fiber in my being. If it's possible, I hate it even more than the word cancer. Cancer is bad enough. But relapsing is not something I can even say without having to catch my breath. So I won't. I pray I never have to ever ever ever say it when it comes to my sweet amazing girl. Nothing would break me more. So to think of Phoebe who has relapsed 3 times... it just isn't fair. It isn't and my heart aches for all of my friends who have ever had to hear those words. Please pray for these warriors and help us spread the urgency we desperately need for better treatments. 4% is not enough. Let <u><b>us</b></u> be their voice.... help me scream!<br />
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I wish I could take everyone here with me to see the amazing place that St. Jude is. There is no better place you could ever be to fight this ugly horrific battle. Once again, I am living the St. Jude perspective. I don't love it. But I am so grateful... Perspective is everything.<br />
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Tomorrow is another long day. MRI results bright and early followed by Endocrine and the long awaited Laser Procedure. I am on pins and needles tonight as I wait to be able to share the next few updates. HUG YOUR KIDS! HUG YOUR LOVED ONES!!!<br />
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Love to y'all from Memphis!!!!<br />
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<br />Kayla Rose's Mommyhttp://www.blogger.com/profile/03248768905832110815noreply@blogger.com1tag:blogger.com,1999:blog-7588032495113459450.post-65666450538068239072014-11-02T17:49:00.001-08:002014-11-02T17:52:35.184-08:00Back in Memphis - Nov 2, 2014We're here!!! Two safe flights and we arrived without any issues. Kayla and I are all checked in and unpacked in our room at the tri-delta house (formerly grizzly house). <br />
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Since we had some time to ourselves tonight, we decided to walk over to the Kay Cafe inside of the hospital to get some salads for dinner. I was anxious to get ahold of my friend Jenny to give hugs and connect. We haven't seen each other since our girls were in treatment here. I am very very worried about her daughter, Phoebe. She is once again going through an incredibly hard battle. The good news is that she is starting to show sides of her feisty "true" self again which is an incredibly good sign. I call it mommy medicine! If you haven't followed Jenny's blog yet, you should. She is such a fantastic writer and could really use all of the support she can get right now. As soon as we walked into the hospital, there they were!!!! Jenny and her oldest daughter, Mae. (Mae and Anthony used to play when we were all living here) Oh what a <i>great</i> surprise that was! Incredible timing. I hope to see much more of them while we are here. <br />
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<a href="http://phoeberoserocks.blogspot.com/2014/11/we-are-still-here.html?spref=fb">http://phoeberoserocks.blogspot.com/2014/11/we-are-still-here.html?spref=fb</a><br />
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This is sweet and incredible Phoebe with her mommy, Jenny.<br />
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<span style="background-color: white;"><span style="font-family: Times, Times New Roman, serif;"><i>Home away from home</i></span></span></div>
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I was feeling so many mixed emotions being back here taking updated photos in front of our favorite places. As always, it didn't take long until I was struck again with the "St Jude perspective". A good ol' gut wrenching reminder to continue fighting for these precious kids. Probably one of the hardest things for me to see here is an ambulance in-front of the ICU entrance. Never a good sign. It always turns my stomach to knots remembering how much of an emergency it often is for patients to get here. I am grateful that is not us. Not tonight.<br />
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Tomorrow we will be at the hospital at 8 am starting with blood work and an IV for Kayla's contrast Brain MRI. She will spend 3 hours with Psychology. After, she will also have her hearing checked and hearing aids adjusted if necessary. Finally, our first day at the hospital will end with the <u>always</u> nerve wracking MRI. It is scheduled for 3:30pm Memphis time. <i> PLEASE </i>keep Kayla in your thoughts and prayers that all is stable still. We will get the results from her MRI on Tuesday. Tuesday, she will also be having a laser procedure on both eyes to "hopefully" clear up the rest of the cataracts.<br />
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Thank you so much to all of you who have been sending all of the kind letters, emails, texts etc. I am reading them all. THANK YOU. We love our Army of support more than you can even imagine. You all are amazing. <br />
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I will keep you posted...... Kayla Rose's Mommyhttp://www.blogger.com/profile/03248768905832110815noreply@blogger.com3tag:blogger.com,1999:blog-7588032495113459450.post-62210253769372934622014-10-21T22:55:00.000-07:002014-10-21T22:55:28.564-07:00Almost 3 years... a new plan What could possibly happen so bad that it takes so long to find the strength just to log on? Two trips to St. Jude since my last update and I couldn't even find you? Reach out to the people who have followed this journey and who have our backs. What could possibly have happened to me...........<br />
What happened to Kayla?<br />
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Honestly, I am ashamed that I couldn't snap out of it. Life has been hard. Realizing this is still the <u>beginning</u> of this journey. Having to keep my already exhausted fists up to protect me from the blows that keep coming is <i>hard </i>while trying to update online<i>.</i><br />
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After keeping my gloves up to protect me from that gut wrenching pain that I felt on 11/11/11, I have often felt that I would rather die than to be hit with that agony again. I have been speechless on here. Ready with constant protection from the blows that have come and continue its threat to return. My gloves are always up. I sleep with one eye open. Refusing to ever be slammed with that pain ever again.<br />
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It is my fault I have not updated in so long. It is my fault and I am so sorry. I realized that in order for this momma to survive, I have had to put my oxygen mask on first. It's been a necessary adjustment for this family.<br />
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That being said..... I have an update before I get to the medical updates to come!!!!<br />
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Kayla and I are co-writing a book. I couldn't imagine a better therapy session than that. I will start to fill you in before our November 2 trip back to St. Jude. I have a lot to catch you all up on. I am reaching for the energy to assume people still are following Kayla and want to know. I know you all are out there. I know that writing isn't just for me any more. I thank you for holding Kayla in your hearts and prayers. Almost 3 years ago we started this journey " officially". <br />
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Do I purge here, or save it for the book??? hmmm. I am not quite sure........... I think I will find my happy medium.<br />
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Love you all.<br />
<br />Kayla Rose's Mommyhttp://www.blogger.com/profile/03248768905832110815noreply@blogger.com1tag:blogger.com,1999:blog-7588032495113459450.post-48591506474167541602014-05-21T21:43:00.002-07:002014-05-21T21:43:44.397-07:00St Jude update - 2 yrs post treatmentSo, I somehow forgot to grab the laptop on the way to the airport. Boooooo mommy!!!!<br />
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I am so sorry! I can tell you I got my punishment. Being at St. Jude and not being able to blog was like eating your favorite food and not being able to taste it! I won't do that again!<br />
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So, let me make it up to you!<br />
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First of all, I will start with the great news. Two years after the last treatment, Kayla's MRI remains NED. NO EVIDENCE OF DISEASE!!!! CLEAR!!!! Whoooooo hoooooo!!!! GO Kayla GO! Now, Kayla graduates to scans every 6 months for the next 3 years. I can not tell you what mixed emotions this news brings. Of course the biggest is just a deep relief that the treatment has worked for her so far to keep Medulloblastoma AWAY. Yes, there are still risks. Risks. God I hate that word. For now, lets just be happy!<br />
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Saturday morning, Kayla got to represent in our local town of Santa Rosa in the "Heroes and Helpers" parade. Her brother and Dad were also there to join in while I worked. It looked like SO much fun. I can not even express in words how wonderful and caring Rob and Joss are (Froggy 92.9). We are happy to help and share our journey with them. It's an amazing thing to witness the love and awareness that comes from Kayla's battle. Stinks that it's my kid... but I'm SO incredibly proud of her. And she is so incredibly proud of herself (most importantly). <br />
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<u><b><i>Oh wait</i></b></u>! I forgot some <i>big </i>news! Kayla turned 10!!!!!! This is how behind my blogging is. I know it's great that things are going so good that I am busy with work and such to not have time to blog this important information, but it makes me sad. You have been such an incredible support to us and I want to keep the really important big things on here... and turning double digits is HUGE! So, here is a few birthday pics.<br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: large;">Last picture a 9 years old! </span></td></tr>
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<span style="font-size: large;">Brotherly love... YES!!! Happy double digits Kayla!</span></div>
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<span style="font-size: large;">It wouldn't be a birthday without my BFF Sisters! :)</span></div>
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So, skip to the evening of the parade. Kayla and I geared up to head back to St. Jude. It was finally my time to go with her. Den was busy with finals at school. Beyond <i>my</i> time to go though. Honestly! It's so hard being at home waiting on all of the important details and updates. SO hard not being there. So here it was. My turn. My first time flying back alone with Kayla. Actually, I had a few people who wanted to come but I was happy to go and have this alone time with my girl. We just don't get enough of it. We had so much fun together. God I love her. She is just such an incredible and bright girl. Easy to be around. Eager to please. My baby girl. I couldn't be more proud of the person she is.<br />
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After two long flights, we arrived at St Jude. The weather was still mild, but humid. The smells became all to familiar again to us. The shiny waxy floors. The families you pass by where we share that familiar glance of understanding with. We were at our home away from home. A place where we just have a shared bond and unexplainable understanding... The sounds of that HEPA filter buzzing in our ear as we slept. Ugh. What would happen this time? What would the MRI read? And what side effect would we have to learn about this time?<br />
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Hope. We just have to hope!<br />
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Day 1.<br />
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Kayla checked in happily at A/T. She chuckled as she forgot her medical record number. I could never. We got her new wrist band and we headed over to E clinic to have this persistent cough she has had checked out. Honestly, we have all been hit pretty hard with allergies this time of year, but a pertussis warning was just issued in her school right before we left! The last thing we want to do is put these neutropenic kids at risk! So, we spent a good hour and a half being checked out to be officially diagnosed with "allergies". Best dx I have ever heard!!! ;) <br />
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We headed over to the cafeteria for some good ol' southern grits. Kayla has now acquired a taste or a "fixin" for grits. So grits she <i>must</i> have! It sure doesn't take long for me to start adding that southern twang to my lingo. <br />
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Kayla then had a visit with her visual specialist at St. Jude.<br />
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Unfortunately, Kayla's cataracts have progressed to the point that she could actually qualify for surgery. We were advised to put it off until it really affects her and is a "problem". She isn't driving, so that's good! Also, her incredible IEP team at school has made so many wonderful accommodations that we will hopefully be able to delay a year. We shall see.... but we are <i>hopeful</i>. Surgery will require us to be at St. Jude for 2 weeks. One week per eye. There are risks with the surgery (as there are with <u><i>any</i></u> surgery). One thing her doctor is certain of is that she will require reading glasses after. News to me!!! So, we will hopefully be able to push this out for a bit. She was checked again to see if regular glasses would help at this point, and they still will not. So we wait.<br />
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Kayla then got to A/T where she had her vitals taken and she got her IV. Miss Virgina was there again. We sure do love her! Kayla's veins have seemed to have grown (even if the rest of her has remained pretty small). Maybe it was Virginia talking to them.. but they just popped up! Whoo hoo! It's the little things. Kayla was SO happy!!!! ONE stick!<br />
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<span style="font-size: large;"> TIME FOR LUNCH :)</span></div>
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Clearly, we were pretty happy about this visit!!!!! Kayla ate it all! Go Kayla :)<br />
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We went and visited Endo where they measured Kayla's sitting height along with regular height and weight. She has gained 1 lb. and 1 inch!!! No real updates other than that. The rest are private, but fine. <br />
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We finished our day with a visit down to the School where we could hug our beloved Miss Michaela! How beautiful is this??? We can't go to St. Jude and not get our sugar!!! <br />
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Kayla was out like a light as we prepared for the next very full day starting with a 6:45 am MRI. </div>
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Day 2. </div>
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How could this happen????? There was zero contact between A/T and MRI imaging. Kayla had that IV for nothing. The wrong gauge was inserted. She needed a 22 gauge and not a 24. You have to have a bigger size tube for contrast MRI's darn it. (yes, 22 is bigger than 24... opposite) She had been <u><i>SO</i></u> brave. So strong. No tears. Now, she had had it! I couldn't blame her. I was ticked too! Seriously?? How is there no communication between these two important places? I didn't need to flush her IV the night before. I didn't need to hand bathe her early that morning. She could have had a quick needle poke and an IV the next morning. UGH. HOW DOES THIS HAPPEN? We were tired. We were nervous. We were frustrated. I witnessed the new nurses assistant setting up the station for her new IV. I witnessed her trembling hands and literally heard her prayers inside her head begging God that she would NOT be the one that had to try and get Kayla's new IV in place. It was between her and the grumpy senior nurse. Great. Just GREAT. Kayla was having a hard time not sobbing but silently crying. I was coaxing her to breathe like she was in labor. She was sitting on my lap and I was blowing her nose. It was rough for her. It was early. This was not fun. Luckily it was the senior nurse that was the one to poke Kayla once again. <i>Lucky for her</i> she got it the first time. I will NOT let that happen again. Kayla picked Sleeping Beauty to watch during the MRI and I was rushing off to check out of the Grizzly House. Our shuttle to the airport would be arriving at 12:00. The rest of the day was stacked. </div>
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I rushed back to the hospital after lugging all of our bags across the humid parking lot and got back to MRI imaging about 10 minuted before she walked out with her nurse. What a trooper this kid is! Seriously. </div>
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We headed over to Speech therapy and PT where she continued to awe them at how fantastic she is doing. PT was especially impressed. Not only did Kayla do hopscotch forward but <i>backward!!!!</i> The first in history for her therapist at St. Jude so we were told. He confirmed that Kayla should continue her amazing Tae Kwon Do! It's paying off!!!! :) GO Kayla GO!!! </div>
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Time for E Clinic. Result time! I was pacing, tapping my fingers... completely unable to hold still! This kind of stress is not something I would ever EVER wish on anyone. Luckily, you know the results. Kayla's scans remained clear. No change. NED - No Evidence of Disease!!!! </div>
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Eating more grits while waiting for her physical therapy appointment ;)</div>
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We are so grateful. So so grateful that she is still here. Still breathing. Still fighting. We will NEGU. NEVER! </div>
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<br />Kayla Rose's Mommyhttp://www.blogger.com/profile/03248768905832110815noreply@blogger.com7tag:blogger.com,1999:blog-7588032495113459450.post-54167575547957751992014-02-20T14:23:00.003-08:002014-02-20T14:23:26.808-08:00Day 2 - ResultsThis morning Kayla got fitted for her very first hearing aids. Not only will they help amplify the high pitch sounds she can no longer hear, but it will help with the ringing of the ears by omitting quiet but steady "white noise". She is sporting the loaner pair today and so far she LOVES them. She told me that not only can she hear everything so much better, but she can even hear herself better. I had no idea she needed them so badly. I am thrilled she is so happy about them! Ahhh... the little things! Her new pair should arrive tomorrow, weather permitting. If they don't make it, they will ship them to our house. Gotta love St. Jude!!!!<br />
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So this was unexpected... Kayla <u><i>passed</i></u> the growth hormone test! I will go into the details, but this means that for now she will <u>not</u> need the daily injections to help her grow. Hopefully, she will continue to trend the way she has been. Of course, her Endo team will monitor her very closely. She is still on the chart, but at the very low end. If she continues to grow at the same rate, Kayla will most likely reach an adorable height of 5'1". Fine by me! Who knows. Maybe she will suddenly sprout all on her own.<br />
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The test went well. Kayla felt very yucky and tired, but tolerated it well. She did not get sick! She slept through the end and was begging for cheese cake by the end. That's my girl!!! <br />
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<br />
MRI results.<br />
THANK GOD. NED. NED. NED. NED. NED. NED!!!!!!!!!!!!!!!!!<br />
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This is Kayla with Dr. Gajjar. I can see the relief in her sweet eyes! And his. Answered prayers. I can breathe again!!!!!!!!!! <br />
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"Look everyone, my picture is still hanging up!"<br />
<br />
I know there is no magical answer to how her body will react to the
the aftermath of poison and radiation her 7 year old body was given, so
this is why we will continue to monitor her for years to come. I can
not say enough praise to St. Jude for allowing us to have the best
medical team ever!!! The fact that we don't have to worry about getting a
bill every three months is something I will forever be grateful for.
Every single penny donated goes towards these ongoing treatments, tests,
research and SO much more. Research that benefits children's cancer world wide. With so many other things to worry about, it's a blessing to not have to worry about bills adding up. We can just focus on getting through each day at a time. <br />
<br />
Right now, there is a tornado warning for Memphis. Yep. Never a dull moment!!!! Why worry about a silly tornado when you are floating as high as the sky with those beautiful magical words... NED. NO EVIDENCE OF DISEASE!!!!!!!!!!! Kayla Rose's Mommyhttp://www.blogger.com/profile/03248768905832110815noreply@blogger.com3tag:blogger.com,1999:blog-7588032495113459450.post-18358345029104564402014-02-19T21:12:00.001-08:002014-02-19T21:12:13.181-08:00Day One... never a dull moment. It's been a long day. I can not even imagine how tired Den is right now. The days at St. Jude are literally exhausting. <br />
<br />
Kayla had a few big appointments today. She had her MRI. Of course, that's huge! So important and to never be minimized again by me. Ever. Recently, Kayla had been complaining of some vision changes. She was having a tough time seeing and couldn't really pinpoint to us if it was distance or close up that was worse. Honestly, I didn't really go to any dark place. I was about her age (maybe a little older) when I needed glasses for the first time. A few friends of hers are wearing them now. She had even mentioned how it wasn't fair and that she thought that glasses were so cool! So, of course, I was hoping it was just that. At a minimum she would require glasses. She did have a vision test at school which she did not pass. They attached a note asking us to see a "real" eye doctor. So, luckily we were able to get her in while at St. Jude. It's a place where they know specifically what to look for and are especially used to dealing with vision problems related to cancer or from treatment. <br />
<br />
Kayla has cataracts in both eyes. They are small but were not there before. This is a result of her treatment. Treatment that if she had not had, she would not be alive today. I am afraid that it's just a side effect from what we had to do to give her life. A trade. A trade we made and we still don't know what it will continue to do to her. It sucks but I am SO grateful that it was not a new tumor causing the vision problems. It very well could have been and I am focusing my energy on being grateful it isn't that. Right now the plan is to continue to monitor them. Den will talk to Dr. Gajjar more about it tomorrow. For now, we are told that surgery is not something they want to jump to yet. If it gets worse, then that will be the only way to correct it. We will cross that bridge if we have to. Unfortunately, no glasses will help with this vision problem. So, we will have to find ways to modify in the classroom. Kayla was SO upset. She wanted to "prove" to us that she wasn't making it up... but she did not expect to have something that would not be able to be corrected with glasses. <br />
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Tomorrow is a big day. In the morning, she will meet with audiology to have a hearing device fitted to hopefully help with the ringing in her ears. Then, she has the big growth hormone study. I am hoping to skype in and be there to support them in any way I can. It's going to be long and tough. Then, when that's over, they will head over to E Clinic to meet with Dr. Gajjar to discuss the results of the MRI and find out more about her cataracts.<br />
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Donna and Katelyn are on their way here. God love them! I should really buy one of those pedometers on the days of scan results. I bet I take a million steps with all the pacing I do....<br />
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Thank you for all of the amazing support, texts, emails, love, prayers and candles. Don't stop! Kayla Rose's Mommyhttp://www.blogger.com/profile/03248768905832110815noreply@blogger.com3tag:blogger.com,1999:blog-7588032495113459450.post-87127289196388495482014-02-09T19:40:00.001-08:002014-02-09T19:40:52.790-08:001 year 8 months post treatment - Scan time!How could it <i>possibly</i> be scan time already? These three month intervals are just flying by! As of right now, Kayla is officially 1 year and 8 months post treatment. Go baby girl GO! I was just realizing that this coming August's check up will be the last "3 month" one and Kayla will then, God willing, be moved to every 6 months for her MRI's. So <strike>if</strike>. <i>Scratch that</i>! <u><b>WHEN</b></u> her MRI reads NED again, she will have two more tests done at the 3 month mark. <br />
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School is going great. We have been blessed with yet another fantastic teacher for both kids this year. I'm convinced Anthony will be an engineer one day. This kid is obsessed with numbers. He is now dividing and multiplying - at 6 years old! Also, he has been writing his own song to perform at American Idol as soon as he is old enough. He loves singing it in front of anyone who will listen. It's so stinkin' cute!! <br />
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Both kids recently graduated to their yellow belt in Tae Kwon Do. It was a very special and proud moment. I know that both of them, in their own way, tried so hard! I love watching them get better and better. Kayla is still loving her Piano lessons. It's time for a new book! I can't believe how many she has plowed through. Watching her perform Carol of the Bells for our Church at Christmas was simply amazing. I asked her if she was nervous after and she said, "No. I was only nervous walking up there past everyone. Then it was easy." I love the calm effect it has on her when she plays. When school is stressing her out, or life... she just plays and all the hard stuff just seems to disappear for a while.<br />
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Last month, we got invited to do the most amazing thing ever! We got to have a private tour of 6 Flags Discovery Kingdom and a private dolphin swim! I just want to say THANK YOU again to Chelsea and Becky for making this magical day happen. It was a day that can never be duplicated and for sure will never be forgotten! <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQ4n-gcWRTeocXb8NFkG1YVWI0pyvoBliPPYG7UK0OkjmUFHUXaElOUSy5w2KW88SBjGTQHjXQxba1kVLq-0Z_R8q47wsnodDxtme4uZy128Ab9Cf0abAn0ZggfDDQglMKXAtzeSaXuo_5/s1600/IMG_9150.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQ4n-gcWRTeocXb8NFkG1YVWI0pyvoBliPPYG7UK0OkjmUFHUXaElOUSy5w2KW88SBjGTQHjXQxba1kVLq-0Z_R8q47wsnodDxtme4uZy128Ab9Cf0abAn0ZggfDDQglMKXAtzeSaXuo_5/s1600/IMG_9150.jpg" height="640" width="480" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1JKUr1Jld3zykAynHJ_NN6TTInyID6uzV1JK3kRX-0PDkAWY-E18MxOEEeZWbF4NxYcsZv8T2sZI-t-3w-_fGor3qJjJRyy4UmAw2sALFYjABqrOK9nrrQrDyLlFOVLkkyQrWdaV5V7Ca/s1600/IMG_9196.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1JKUr1Jld3zykAynHJ_NN6TTInyID6uzV1JK3kRX-0PDkAWY-E18MxOEEeZWbF4NxYcsZv8T2sZI-t-3w-_fGor3qJjJRyy4UmAw2sALFYjABqrOK9nrrQrDyLlFOVLkkyQrWdaV5V7Ca/s1600/IMG_9196.jpg" height="480" width="640" /></a>This next week I will be feeling the nerves. The lovely scanxiety will rear its ugly head once again. It's something that just can't be helped. Kayla and her dad will fly out to Memphis on the 18th (next Tuesday) and are scheduled to fly home on Saturday. We are preparing for this visit to be a little tougher than the past ones. Kayla's endocrine team is going to do a special test on her that will determine how much growth hormone they will be putting her on. This is a pretty brutal test. In order to get her body to produce what they need, she will be made hypoglycemic. She will be very sick for a few hours while they do hourly blood draws. Once the test is over, they will make sure she gets the sugar she needs to feel better. I keep reminding her that this is not Chemo and she does not have cancer again. It's just so that they can give her the special medicine to help her start growing again. Kayla has been in the same shoe size for almost 3 years now. It will be nice to see her start growing again. Once this test is complete and Kayla starts to feel better, they will head on over to E Clinic to meet with Dr. Gajjar to go over the results of this MRI. So that will be a very long and tough day for all of us. <br />
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KFGY will be hosting a radiothon, Country Cares to benefit St. Jude from 6am-7pm on
February 27th and 6am-7pm on February 28th. If anyone who is local wants to help out, they are looking for people to take calls. Here is the link: <a href="http://www.signupgenius.com/go/10C094BA5A92CA5FD0-kfgy" target="_blank">Sign Up Here</a> See if there is a time that might work for you to help out. These events are highly energized and very moving!! Next Sunday, we are going to do a pre-recorded radio interview with Froggy for the radiothon. It has been a while since we have done one. As always, we are looking so forward to supporting St. Jude in every way we can. <br />
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Please keep Kayla in your thoughts and prayers. This means so much to us!! I promise to keep you all updated next week as we get to walk through those magical doors once again. Please God, please keep this just as routine as possible. Kayla has some living to do! ;)<br />
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xo, Kayla's mommy Kayla Rose's Mommyhttp://www.blogger.com/profile/03248768905832110815noreply@blogger.com4tag:blogger.com,1999:blog-7588032495113459450.post-25555133211075727902013-11-21T19:12:00.002-08:002013-11-21T20:00:16.934-08:00Results Part 2ALL CLEAR!!!!! ALLLLLL CLEAR!!!! Those beautiful words that make a mommies heart sing. I will never get used to the nerves that come along with waiting for the reassurance of NED. <br />
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All I keep thinking is, YAY... we get one more holiday at home together. It's one step at a time. Grateful just seems like such an understatement. But I can't find a more appropriate response to how I feel tonight.<br />
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Hopefully today will be the very last time Kayla has to get a Lumbar Puncture. So no more sedation! That is a very huge thing to check off the list. Den thinks it might be once a year still, but we are going to double check this.<br />
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So, I was thinking about all of this last night. Realizing that Kayla saw 6 specialists yesterday jolted me a bit. Think about that. Getting blasts of information, some critical (and some not so critical) results from 6 different specialists in ONE day. That's a lot to wrap your brain around. To think that we did that for 8 months. No wonder. Just <u><i>no wonder</i></u>! No wonder everyone is SO exhausted at the end of the day there. <br />
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Yes, I'm exhausted. Even though I'm here at home. My brain has had a lot to retain, learn, and process. Again. Working, trying to maintain a normal-ish routine for Anthony and not fall apart is hard. Especially when I can't explain that the knots in his stomach are normal. He doesn't understand what anxiety is, but clearly feels it. What else is there to do but keep putting one foot in front of the other and smile. We don't have much in this world that we can control, but how we deal with these situations is something that we can. <br />
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This is Miz Jackie! The sweetest face behind the desk at E Clinic </div>
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Kayla getting ready for her sleepy medicine before her spinal MRI and Lumbar Puncture</div>
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St. Jude has world famous bakers that retire only to find themselves baking for these amazing families and staff. Nothing like cheesecake when you wake up! YUM! Kayla is SO glad to finally be able to enjoy these amazing foods here when not so long ago she couldn't even look at them!</div>
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This is the awesome Miz Ashley. She works for Child Life and brings so many smiles to the kids by doing things like this. Just amazing. </div>
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Here is the incredible Miz Michaela. Kayla's Second Grade teacher at St. Jude. She has a heart of gold and if we lived there, we would be the closest friends. LOVE her!<br />
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One LAST hug for the incredible Miz. Theresa - Kayla's CNA (Certified Nursing Assistant) While going through chemo. They have such a great bond. This woman is a GEM. The BMT floor is lucky to have her.... <3<br />
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What's St. Jude without a little celebrity LOVE? These guys are awesome for coming out and making these kids smile :)<br />
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Kayla- Getting Tony Parker's Autograph. DENNY, YOU NEED A NEW PHONE. This is so blurry!!! (Thank you for taking it though) ;)<br />
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Finally, Kickin' it in the Art Room!</div>
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Good night sweet girl! Tomorrow you get to play during PT and make them so proud of you for how strong you have gotten! I can't wait to see you tomorrow night. I don't know if I will be able to stop kissing and hugging you. Mommy misses you SO much!!! Oh, and your cat is a pain in the rear to sleep with! I don't know how you sleep with him every night! ;)</div>
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Kayla Rose's Mommyhttp://www.blogger.com/profile/03248768905832110815noreply@blogger.com5tag:blogger.com,1999:blog-7588032495113459450.post-79129709181466923662013-11-21T09:42:00.001-08:002013-11-21T09:42:42.509-08:00Some Results are in...Kayla's hearing remains STABLE. MRI of the brain is CLEAR!<br />
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We are still waiting on her Lumbar Puncture and Spine MRI results to be able to claim NED (No evidence of disease) once again!<br />
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Lots of pics and a final update to come when I get off of work tonight. Thank you to all of you for your loving notes, prayers, thoughts and candles.<br />
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Keep them coming! Kayla Rose's Mommyhttp://www.blogger.com/profile/03248768905832110815noreply@blogger.com2tag:blogger.com,1999:blog-7588032495113459450.post-12706167158289948812013-11-19T20:49:00.002-08:002013-11-19T20:49:58.773-08:00Back in Memphis - 1 yr. 3 monthsIt's been a long day. Longer than I really expected emotionally. I never can fully prepare myself for this. Because honestly, each time is different.<br />
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Kayla and Denny have safely arrived to St. Jude. The magical walls of happiness and hope have embraced our family once again.<br />
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Luckily for Anthony, he got to spend the night at a friends house last night and wasn't up and on the freeway at 4am like the rest of his family! Seriously... I don't know what I would do without my friends!!! Not only did he get to spend the night, but he got pancakes in the morning AND he got to sleep with a flashlight. It was the perfect distraction.<br />
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Driving away is never easy. This was the first time without Anthony sobbing in the back seat about how scared he is and how it isn't fair. This was the first time I drove away in silence and it pretty much set the mood for my day. The bay area was finally getting the rain it's been begging for and I welcomed it.<br />
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Tonight, Kayla opened up the letters sent along with her from her classmates. Encouraging letters filled with love and hope! She LOVED them so so much. It was a wonderful surprise. After reading each and every one, she decided to go and grab a movie from the lobby downstairs in the Grizzly House.<br />
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There are no coincidences.<br />
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Tomorrow Kayla will have a very long day filled with tests. I am a little confused as to what time her first MRI will be because they changed the schedule recently. Denny is trying to study and do his homework now that Kayla is asleep and I just don't want to interrupt. We know what is happening. We know all of the tests being done. Please just send lots of positive thoughts and prayers. I will post tomorrow with how the day went. We don't expect any results until Thursday. But we will have some answers tomorrow.<br />
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Good night to all of you and THANK YOU. I don't know what I would do if I felt alone.... and I don't. So, thank you.<br />
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<br />Kayla Rose's Mommyhttp://www.blogger.com/profile/03248768905832110815noreply@blogger.com8tag:blogger.com,1999:blog-7588032495113459450.post-44085162541318325392013-11-12T20:19:00.000-08:002013-11-12T20:19:05.501-08:00Almost that time... again.As 11/11/13 (2 years from that first damn MRI) slipped away, I can't really say that I feel any calmer. Kayla's next MRI is only a week away now. So how can I be calm? How can I breathe when I feel this constant flow of uncertainty? It's in the cool autumn air. Its watching the kids trick-or-treat and having flashbacks of when I knew something was wrong, but didn't know what... yet. <br />
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I notice that I watch her a little closer when she's about to have scans. I look for any signs of change. So far the only changes I can see are the obvious ones. The lack of growth in the past year. One teeny tiny centimeter. Yep! That's it. <i>Thank you Radiation</i>. Kayla's ears ring a lot when she is in noisy places. Of course, she has a very hard time concentrating when the ringing is going on. I notice that her short term memory is starting to get worse and worse. My once overly efficient and organized child is now replaced with one that is forgetting the simplest things on a daily basis now. No matter what sticky notes she writes herself, it's happening. The dry erase calendar has helped, but it's still not entirely enough. My heart breaks for her when I watch her get so frustrated with herself. She smacks herself in the head over and over and often cries. She hates it when she forgets things. Chemo brain is what it's often called. I think the chemo mixed with 31 rounds of full brain and spine radiation is what it is. <br />
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This month was a busy one. Kayla changed schools. She still loves her old school. It was such a source of strength for us and love when the walls came crashing down around us. Now both of the kids are at the same school and boy is that easier!!! Kayla is making lots of friends but misses her old ones too. I keep reminding her, they are just around the corner!!! <br />
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Next Tuesday Kayla and Denny will make the trip out to St. Jude once again. This will be her 1 yr 3 month check up post treatment. Our scheduling team has booked Kayla solid.<br />
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Brain MRI, Functional MRI, Lumbar Puncture, Pulmonary, Audiology, Echo/EKG, Endocrine, Psychology, Physical Therapy and ... results. <br />
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Denny asked me again today what's better for me? Being here at home and staying busy with work or being there? Neither. Three months later, we get to do it again. But she's ALIVE!!!!! Thank you to St. Jude, Dr. Gajjar (oncologist), Dr. Pai (radiologist), Dr. Yamaguchi (pediatrician), & Dr. Gupta (neurosurgeon). <br />
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The plan is for Den and Kayla to fly home next Friday night and the next morning we will do our St. Jude walk in San Francisco. Have I mentioned it yet? If not, let me fill you in! <br />
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<span style="color: magenta;"><a href="http://fundraising.stjude.org/site/TR/Walk/Walk?px=2263299&pg=personal&fr_id=8267" target="_blank">Click here to go directly to Kayla's Team Page</a></span></div>
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We walk. To help her live.
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Kayla Rose</h4>
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November 23, 2013
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St. Jude Give thanks. Walk. - San Francisco</h2>
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Location:</h5>
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San Francisco Zoo</div>
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Sloat Blvd. & the Great Highway</div>
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San Francisco, CA
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Event schedule:</h5>
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Registration begins at 7AM followed by the opening ceremony. The
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So, come and join us if you can!!!! I am going to bring a bunch of Kayla Rose T-Shirts and wrist bands to give to anyone who walks with us. If you can't make it to the walk, but want to help, you can! Either donate to Kayla's team (click on that link above) or even start a team of your own and ask your friends/families to help out. There are still 11 days to go! This will be the very first time the San Francisco Zoo has partnered up with St. Jude. I hope it's very successful. There will be other patient families there as well. I know it would mean a lot to Kayla to have as many walkers join us as possible. It's early. I know! They want us finished with our walk by the time the zoo opens at 10:00. I believe they are giving zoo passes out to anyone who has raised $35 or more! Dress warm.<br />
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HUG YOUR LOVED ONES. More to come soon! <br />
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<br />Kayla Rose's Mommyhttp://www.blogger.com/profile/03248768905832110815noreply@blogger.com6tag:blogger.com,1999:blog-7588032495113459450.post-34102293014212765972013-08-13T21:48:00.002-07:002013-08-13T21:48:20.955-07:001 Year Scan Results <div class="separator" style="clear: both; text-align: center;">
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First of all, I will not do to you all what was done to me today. I am not going to dilly dally. Kayla's scan results were ALL CLEAR!!!!! Now, let me begin by saying, this was the most nervous I have been since UCSF. <br />
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We woke up early and quickly made it over to E clinic. 9:15 came and went. I sat in the cheery waiting room at E clinic just waiting for Kayla's name to be called. It was not like them to be this late with us this early in the morning. The clinic was empty. While we were sitting, Ashley from Child Life all of a sudden appeared. She came and sat next to Kayla. I didn't really think anything about it at first because she had a release form for me to sign for some art work Kayla did that they wanted to display. Sure! No problem! But when she continued to sit next to Kayla and ask silly questions I started to get concerned. She seemed to be trying a little too hard to keep conversation and didn't seem to have any plans on leaving her side. I had heard many stories from other families at St Jude that were about to receive bad news that someone from Child life comes and stays with the kids so they don't have to be in the room during the conversation. Immediately that thought came to my mind and I began to sweat. My heart was pounding so hard and all I could hear was Kayla saying, "Mom.. you aren't answering any of the questions. Mom! Are you listening?" I looked at Ashley and asked her with a lump in my throat, " Do you know the results of her MRI? Is that why you are sitting with Kayla?" She quickly answered, "Oh no! Not at all. I don't know the results". Still, I wasn't really able to believe her since she didn't seem to be moving any time soon. I just kept thinking, maybe she doesn't know the results but got a call to come and sit with us.<br />
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Kayla's name was finally called. I couldn't get in that room quick enough. We went back to room 6 and sat down. A new nurse came in and introduced herself and left. I was expecting Kayla's nurse Lizzy or Dr. Gajjar to walk in, but instead walked in two doctors in white lab coats with badges that read "ONCOLOGY" in big bold print. The lump in my throat returned again this time bigger. What in the world was going on here? What bad news were they about to share??? I was so scared. They asked about 4 pointless questions before I interrupted demanding that they tell me why they were there and did they know the results of Kayla's MRI. The lady said, "Oh yes! Everything looks great! I will get you a copy of the report if you want". And just like that, I felt like I was going to have a heart attack. <br />
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I just kept trying to catch my breath. It was so unfair that I had to go through that added stress on top of already being worried enough. When Lizzy and Gajjar finally walked in, I made sure they heard my story loud and clear. That is just NOT ok to do to someone. They reassured me that all doctors there deliver news in different ways. That it totally depends. And that each day it's different. So no matter how much I try and search for a clue, I won't get one. I guess that makes me feel better. Still, those long hours after an MRI and when you finally learn the results are the most excruciating stressful hours EVER.<br />
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Yes, Kayla looks fantastic. Yes, she isn't showing any symptoms. Yes, over and over I have watched as friends have gone in with their kids looking and acting perfectly healthy and thriving to be told that their new normal was about to get rocked yet again. Over and over I have heard the stories. You are never safe. It's never over. No one can ever tell. The reason for the scans every 3 months is to find things early if they are back- hopefully before any symptoms have occurred. So, you can imagine how you just really don't know. It's always scary. <br />
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Today I met a mom and her 16 year old son, Anthony - yep- Anthony. He was there for the results of his yearly scan. 7 years out!!! He also had Medullo and was diagnosed when he was only 9 years old. It was refreshing and also sad to hear her say that even this far out, she gets SO scared each and every year. They walked out of there able to breathe again today too! I was so happy to hear this news. His cancer had metastasized to his spine. So the fact that he has remained cancer-free this long is so inspiring to so many of us! <br />
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We are back home safe and sound. Kayla had the awesome surprise of her room being painted while she was gone! She is so excited to have her "tropical room". I am about to crash. It's been a very long and exhausting day as you can now imagine. Thank you all so much for the prayers, thoughts and kind messages. Kayla has the most amazing loving team behind her... we are so grateful!!!! <br />
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Next up. 4th Grade!!! YIKES!!! :)Kayla Rose's Mommyhttp://www.blogger.com/profile/03248768905832110815noreply@blogger.com5tag:blogger.com,1999:blog-7588032495113459450.post-28040663931676479222013-08-12T13:53:00.001-07:002013-08-12T13:53:43.029-07:001 year - day 2Last night I couldn't sleep. I don't know if it is more the anticipation of the possibly unexpected news, or just the fact that there is this dreaded appointment so stinking early that we just can not miss. I always have this fear that my alarm clock will not properly go off. Either way, I found myself awake most of the night except for about three broken hours. <div>
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Kayla made it to her appointment on time and the scans went as good as they could. Being that they are an hour long, she actually fell asleep during - lucky- well, no. Not really. </div>
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Audrey, Carolyn and I sat and stared at the beautiful, huge tropical fish that swim in the MRI waiting room fish tank. There is something so peaceful about that massive tank. Results have been heavy on my mind all day. Reading all of your encouraging notes to us really does help. Having best friends here was the perfect medicine. We find many moments to laugh and joke, just like we always do. This morning, just before we Kayla got called back for her MRI, the girls were commenting on which fish they wanted to be. Kayla said she is the Nemo fish and I am the cute puffy fat fish --- NIIIICE. We laughed and laughed. She kept trying to take the comment back, but it was too late! HAHA. Very funny Kayla Rose. I will get her back for that one! ;)</div>
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Just following her MRI, we had another appointment at A/T for more labs. Unfortunately, there was no communication between clinics and they removed her IV prior to this appointment. So, she had to be stuck. Again. </div>
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We quickly headed on over to the St jude gift shop to find something to soften the sting. When my money ran out, we were done. </div>
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Kayla had her follow up with Physical Therapy. During the evaluation, I was asked if she can get in and out of the car on her own? Could she kick a soccer ball? Can she climb stairs without hand rails? All of the questions were happily answered with an enthusiastic "yes". So many kids who have had the same cancer as Kayla can not answer yes to those questions. For that I am eternally grateful! She had rave reviews from her therapist who sad she has zero concerns for us at this time. When we told her that Kayla had recently joined her brother in his Tae Kwon Do class, she raised her eyebrows and beamed! It truly is a miracle. And just like that, and she skipped away down the brightly colored hallway with Audrey. It <i>is </i>a miracle. I will never take it for granted. Ever. </div>
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Our final visit with the Endocrine doctor was pleasant. There are no changes from the last appointment to this one. Her height is still at 5% for her age group. She has grown 1 cm. If her growth remains at the same rate we will wait to talk about any future growth hormone tests. If it falls off a bit, they will want to do it at the 1 yr 6 month check up in February. So it just really depends. If Kayla were say, 13 years old, it would be a more urgent matter. Because she is only 9, we have some time and flexibility still which is really good. Until then, we just keep waiting for signs of puberty and hoping that the chemo and radiation didn't effect any of that... Just another thing we all often take for granted. </div>
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Our day at St Jude is over. So, we are beating the heat at the Target House again. It's 98 degrees and soooo humid. It's hard to breathe and the mosquitos have had their way with me again. I forgot how big these vampires are here! We are happily enjoying a movie in the Amy Grant room. My stomach is in knots. My concentration is low. I am just hoping that this is not the last day of this new normal that we have grown to love and be grateful for. So many friends come back to scan with their kids doing just as fantastic to have their wounds re-opened again. It's just so scary and unfair. So, hug your loved ones close and just don't forget to be grateful for even the slightest inconveniences. Because everywhere you turn, there is someone who has it worse than you. There is no place that reminds me of that more than here. Just this morning I met a mom who's 5 year old daughter (who looked and acted two) has a tumor in her brain that they will never be able to get rid of. The chemo and the radiation have not even touched it. They have only caused horrible side effects (some which haven't even reared their ugly heads yet). The only thing that has helped her live this long so far, is surgery. She has had 6 surgeries so far and it just keeps coming back. So, I took a full "survivors guilt" filled deep breath and just felt grateful that our situation hasn't come to that. That we are here today. i love you today.... beautiful today. </div>
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Kayla Rose's Mommyhttp://www.blogger.com/profile/03248768905832110815noreply@blogger.com4tag:blogger.com,1999:blog-7588032495113459450.post-91561601467981564312013-08-11T20:02:00.002-07:002013-08-11T20:02:37.072-07:001 year Scans - It's time.We arrived in Memphis yesterday night. It was a smooth flight here with no delays. The best part is that Kayla and I both have friends here with us. We decided to get a rental car so we could get out beyond the St Jude walls and show them a little bit of Memphis. We are so glad to have wheels here. It really makes it nice! <br />
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Today we got to see Kayla's best friend from St. Jude, Angiel! It was sooooo great to see her, her mommy and brother. To be able to hug them in person again and just sit with them was very special. Angiel looks so beautiful. She just started 6th grade! The look of surprise on their faces when we showed up was priceless!!! <br />
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Audrey, Kayla, Angiel & Markus (the big 3rd grader) haha!!! </div>
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After our visit with friends we drove over to the Target house to tour it and do some crafts of course. We painted an awesome painting for Kayla's room. She has no idea, but her dad is painting it a beautiful turquoise blue to surprise her when she gets home. Ever since Hawaii, she really wants a "tropical" room. <br />
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Kayla finished the day getting all checked in through A/T where she got her IV in place for tomorrow's appointment. They did some lab work so that we can get all the results needed on her thyroid. We had the fabulous Miss Jackie. She was so great. No blown veins. No double sticks. No numbing creams/J-tips - and NO tears. Audrey held her other hand and they just stared at each other. The girls formed a bond that was beyond any that they already had. It was really really sweet!!!<br />
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Here we go... the neck vein and the eyes say it all... </div>
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OUCH!!!</div>
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The look of relief knowing the worst is over for today</div>
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And just like this... they are true BFF's forever. <3</div>
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The awesome "Miss Jackie" </div>
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For almost a year while we were here, Kayla dreamed of showing her friends at home this amazing place where she received her life saving treatment. <br />
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So today, Audrey and Kayla were running through the halls giggling and skipping and just enjoying every second of it.<br />
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The walls are just as cheery as always. So many beautiful smiling faces warmly welcoming us with hugs galore to give us strength. This really truly is one of the most amazing places on earth. <br />
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Dinner at Huey's</div>
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(famous for their tooth picks on the ceiling. This is how they get there!)</div>
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This nice guy and his horse, Blue, were dropping a patient and their family off at the Grizzly House after what must have been a fun stroll just as we got back from dinner. Now that's awesome!</div>
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So, tomorrow at 6:45am we will walk over to the hospital where Kayla will under go the all important Contrast MRI. Please keep those prayers, thoughts and candles blazing. She seems to be in good spirits. My stomach is in knots and as always, we can't get the results soon enough. The thought that at any moment your life could be turned upside down once again is something that can't be explained. So we just breathe... and wait. <br />
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We will know results for her MRI on Tuesday. I will update tomorrow night with her endocrine results. Thank you to all of you for your kind emails, texts and FB messages. I read them ALL. It really means so much! Kayla Rose's Mommyhttp://www.blogger.com/profile/03248768905832110815noreply@blogger.com8tag:blogger.com,1999:blog-7588032495113459450.post-80085527934045701732013-07-26T19:11:00.001-07:002013-07-26T19:11:30.766-07:00One Year. Part 2How has it already been a year since we returned home? Yet, when I think back so much has happened. The biggest was selling our house and the crazy aftermath that ultimately led us to our new home! Leaving the house we bought when Kayla was only 6 months old was tough, but a necessary step for our new start. Actually, looking deeper into it, most of my St. Jude family friends have either since moved or are pregnant. Yep, moving was the right choice for me! haha!<br />
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Our new house is nestled on a quiet flat street. There are lots of kids and awesome families. One of the best parts is the freedom to be able to ride bikes out of the garage to local parks and schools. It's great! We are settled in and taking it slow. It's just nice to be able to breathe after all of these months and feel at <i>home</i>.<br />
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Summer has been quiet. A good kind of quiet. I am busy at work again finally. It took a good year, but I am finally booking up again. Anthony will be starting soccer on Thursday. He is very excited! Kayla will be able to practice with friends teams, but we all decided it would be much too much on her to play in games. This league is so much more competitive. Not only has she lost a year, but she still has trouble with endurance and strength. The last thing I want to do is to hurt her ego. She has been doing so fantastic.<br />
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We are preparing for scans again. I know! 3 months goes by so quickly. This time, our friends Carolyn and Audrey will be joining us. I am so glad to have a friend go with me. Kayla can't wait to show Audrey around St. Jude and the Target House. I will update you all as time gets closer. The schedule this time is the lightest yet. We arrive Aug 10th at night. We have all day Sunday free until 4:00pm when we check in. The MRI is scheduled for Monday the 12th at 6:45am. Kayla will have PT and and appointment with Endo to see how her thyroid is doing. I haven't measured her, but she looks to me like she really has grown! I hope the measurements prove me right. We will spend Monday night getting pending MRI results off of our minds as much as possible. Tuesday we should get results at around 9:30 am and we catch a flight home 2 hours later. Hopefully it will be short and sweet with nothing but continued good news to share.<br />
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Kayla and Nick. She is really missing him this summer!</div>
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Fun days doing the rides at 6 Flags</div>
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First Piano Concert! </div>
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Beautiful Burrito Belly! Cali burritos are the best ;)</div>
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Beating the heat with buds in Sausalito</div>
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4th of July morning run</div>
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I have a dreaded update to share. One of Kayla's BFF's from St Jude has relapsed. You all remember Angiel? She had osteosarcoma in her leg. This week she had her routine scan and they learned that the cancer has returned in her spine. Angiel has been such a trooper. She is one of the strongest girls I know. When Kayla had no appetite and we were struggling the most, it was Angiel who would try and encourage Kayla to eat just one bite. Just to <i>try</i>. We spent many many hours playing games and hanging out as families. I just know that when I gently explain this devastating news to Kayla she will be crushed and scared. Angiel has started Radiation. This just breaks my heart. As we know, St.Jude will do everything in their power to make sure Angiel becomes cancer free again. As you can imagine... it's been a tough week. <br />
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So please light a candle or say a prayer for our special friend, Angiel. Thank you! </div>
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http://www.stjude.org/stjude/v/index.jsp?vgnextoid=508436af477b7310VgnVCM100000290115acRCRD</div>
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<br />Kayla Rose's Mommyhttp://www.blogger.com/profile/03248768905832110815noreply@blogger.com1tag:blogger.com,1999:blog-7588032495113459450.post-41140359887251212782013-07-25T23:03:00.000-07:002013-07-26T18:42:28.008-07:00One year. Part 1Oh dear blog. Wherever have you been?<br />
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Just know that I have missed this as much as any of you.....<br />
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I have been sharing my laptop with den because of school but am happy to snatch it now because he is asleep! I need to do this more often, I know!<br />
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So much has happened. So much. Where do I start?<br />
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Kayla, of course! She is doing fantastic so far from what I can tell. If you saw her today you would never ever know she was so sick not so long ago. Her hair is growing in (she is sporting the odd bi-level haircut that was intentionally given to me in the early eaaaarly 80's) It started out brown and now has flicks of a true honey color running through it. It's still fuzzy even though I have made every effort to cut off the fuzzy ends. It will surely take time to get it to a regular hair status. But who cares! Right? It's so great to watch her Thriving. Running. Playing. Laughing... Living!!!<br />
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I miss writing daily. I miss it.<br />
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Kayla's Make-A-Wish was good! We had a wonderful time away and yes, I actually was able to forget for a little while about cancer. That was my personal goal. Kayla was surprised that Hawaii felt so much like San Francisco. I think it's because they sent us to Oahu. It's the "city" of Hawaii. And man is it busy!!!! It felt a little like LA. We spent almost 90 mins in bumper to bumper traffic to get to our Luau. Not quite what we remember from our trip to Maui 7 years ago. I guess this is the busy island. We were in Waikiki. Right in the hub of all the shopping and tourists. It was busy. Very busy. She was able to kiss and dance with a dolphin but was not granted the "swim" she really hoped for . I know... believe me... it was a tough day. On her 9th birthday she was scheduled to swim with the dolphins at sea life park.... or so we thought. We showed up and followed our M-A-W directions. One of them being that we were encouraged not to change any reservations as to not upset any of these amazing donors. I get it! And they are amazing.... But when my kid is crying (ok... sobbing) on her birthday because she didn't "get her wish" I was shocked that not one single person there asked if I could chip in to get her the swim. I would have happily paid out of pocket. We were there on her make-a-wish to swim and she didn't get to do it. A kiss is great. A good photo-op... but that was not her wish. I don't know what to do at this point. I guess we will have to contact six flags locally and pay for a private swim... We still had an lots of great memories and if you know anything about us, we make the most of any situation! :) One day we will take her to experience the relaxing side of Hawaii. Remember..... she is my little old lady. A true "old soul". She doesn't care about shopping or busy streets.... she wants to sit on the beach and read.... she wants relaxation and quiet. But as a parent, you are not able to give your input with make-a-wish. They take the kids into a room alone and ask for their wish. I know. Kind of strange. Only us parents really know our kids and can help them articulate. Still, the biggest blessing is that she was able to enjoy this trip cancer free! My favorite moment was when Kayla got to play her piano piece in front of a world famous piano player who plunked himself in a hotel lobby on the busy strip our last night there. She had the audience wowed... and that made it the most incredible moment ever! I could listen to her play that song over and over again! <br />
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Meeting our pilot! They got to sit in the cockpit until almost take off. So sweet. </div>
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That's a turtle!!! Not a rock (turtle island)</div>
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<tr><td class="tr-caption" style="text-align: center;">Den's Birthday Breakfast</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Luau Night- Happy Birthday Dad! </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">So excited to swim with the dolphins! Happy 9th birthday Kayla! </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Part 1.... it's all I have tonight. I am trying. <3</td></tr>
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<br />Kayla Rose's Mommyhttp://www.blogger.com/profile/03248768905832110815noreply@blogger.com1tag:blogger.com,1999:blog-7588032495113459450.post-20868269379791311262013-05-02T18:15:00.000-07:002013-05-02T18:15:10.224-07:00The Results are INIt's officially going to be the best vacation EVER. <br />
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Kayla's scans were ALL CLEAR!!!!!!!<br />
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When I finally made it home to tell Anthony he tackled me when I delivered the much awaited news. He was so excited and got busy making a special card to go with the flowers he will give her tomorrow. It's so sweet to see how close these two really are. One more night and our family will be together again. I can't wait!!!<br />
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Sunday we will meet with our amazing Make-A-Wish granters to hear all the details that they have planned for us. We can't wait! Monday we have our home inspection. Yep! Finally... it's happening. Tuesday we will fly off to Oahu. I promise to take lots of pictures. It will be such an incredible memory for us. <br />
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Thank you to all of you who lit candles at home, churches. Those of you who prayed prayed and prayed. So far... things are looking perfect for our little warrior! I am so grateful to be typing this great news right now. <br />
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Sorry it's blurry... these hands must have been shaking with excitement! :)</div>
Kayla Rose's Mommyhttp://www.blogger.com/profile/03248768905832110815noreply@blogger.com3tag:blogger.com,1999:blog-7588032495113459450.post-89262379715521054552013-05-01T20:55:00.003-07:002013-05-01T20:55:39.940-07:00Day 1 - Pins and needlesI hate waiting. I mean, usually I can be a very patient person. But for scans that are life threatening, I think you should be notified immediately. It's just the compassionate thing to do. Grrrrrr. Just saying. <br />
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Yesterday Denny and Kayla arrived safely in Memphis. They got set up in their room at the Grizzly Hotel and ordered dinner to be delivered. Unfortunately, Angiel's mom was feeling a little under the weather so they decided to postpone their visit until tomorrow night. Den woke up at 4am to register for his summer college course, Biology. It will be a very very busy summer for him.<br />
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The day started at 7:00am. Unfortunately, Kayla was not so lucky having her IV started again this time. She was pretty upset as to be expected. They headed off to the all important MRI where we have been many many times. The room is filled with new patients, routine scans, and well... you can just imagine. Last weekend Kayla fought of a fever and still had the residual cough and sniffles. Not only was I afraid to have her fly because of the cabin pressure and her ears, but we fear BIG TIME for the kids with zero immune system. Kayla agreed that she should wear a mask when around any kids. Luckily, she gets it. <br />
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Kayla was excited to learn that after her MRI, she would be able to go and see a magic show. There was a world famous magician visiting for the day putting on a spectacular event for the patients and families. Only at St Jude.<br />
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Her audiology exam went great. So far, she is stable! This is great news!!!<br />
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In the Endocrinology appointment, we learned that she only grew 1/2 of an inch instead of the previous trend of 1 inch. They will keep a close eye on this. I won't go into to much detail because I don't want to worry anyone or myself. We will cross that bridge once and IF we have to. <br />
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During Speech, Kayla scored off the charts. She was ranked 20% above her peers. GO Kayla go!!<br />
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After the appointments were over she got to see lots of old friends, ALSAC staff, her teacher Michaela & Miss Theresa. It was a very busy day. There is a large print that we will get to take home from her Thanks & Giving campaign. I can't wait to see it! <br />
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Tomorrow another MRI is scheduled at 6:45 am. (4:45 am California time) Ouch! She will also have Physical Therapy and finish with a sedated Lumbar Puncture. Finally, we should have some results in the afternoon once they meet with Dr. Gajjar. I will update here as soon as I can. I have busied my work schedule like crazy tomorrow to keep my mind occupied. For now, I hope my angel sleeps well. <br />
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Anthony and I went on a date tonight. He was the perfect gentlemen. He held doors for me and everything! We both are feeling a little less than complete right now. :(<br />
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With the Make-A-Wish trip coming up next Tuesday, I can't help but think right now that it's either going to be the best timing for the trip EVER... or the <i>worst</i>. I'm keeping positive and picturing us breathing that deep sigh of relief once again while on the beach for the very first time in Hawaii as a family. <br />
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Thank you for your thoughts, good vibes, candles and prayers. ALL are much appreciated. <br />
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<br />Kayla Rose's Mommyhttp://www.blogger.com/profile/03248768905832110815noreply@blogger.com4tag:blogger.com,1999:blog-7588032495113459450.post-50985221584598228102013-04-28T21:20:00.000-07:002013-04-28T21:20:55.021-07:00Preparing for Memphis - May 2013Tomorrow we will pull out the suitcase and prepare for scans. My mind is spinning. Even though every fiber in my being says "she is FINE". I remember before her very first MRI that revealed a tumor I had no doubt in my mind that there was nothing to worry about.... I remember just wanting to go on with our planned day of a movie with the family. "Just give us the results so we can go have some fun!" I pleaded... not knowing how much our life was about to change. <br />
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So yeah. My mind is spinning and always will.<br />
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The other day, Kayla reassured me. She said, "Mom. It's NOT back. I promise. I am fine." So I am just clinging onto those words and hoping that she can enjoy her Make-A-Wish worry free. We will celebrate..... OH will we celebrate!!!<br />
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After fighting off whatever virus is going around and spending a fortune at Pharmaca, I feel confident that Kayla will be able to enjoy her last day at school tomorrow laughing and playing with her friends. She will be safe to fly and is no risk to the kids at St. Jude with zero immune system. Thank God. We have been very diligent. Making her health a priority right now especially. <br />
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Denny and Kayla will fly away with butterflies on Tuesday morning. Wednesday and Thursday are scans. I will update daily to catch you all up on what we know day to day. Results will be given Thursday afternoon. I promise to update as soon as I hear. Then, our family will be back together Friday. Can we just fast forward to Friday please????? Or maybe I should ask to just pause where we are right now? I would much rather pause while in Hawaii on her Make-A-Wish next week!<br />
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So for now... I will keep taking deep breaths. Praying. Hugging. <br />
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Thank you for following this journey and being such a huge source of strength to us. Please keep praying for a CURE. Kayla Rose's Mommyhttp://www.blogger.com/profile/03248768905832110815noreply@blogger.com9tag:blogger.com,1999:blog-7588032495113459450.post-19086680480084956412013-04-11T21:57:00.000-07:002013-04-11T21:57:05.483-07:00And the count down beginsWhat a wild couple of weeks it has been! A good wild though. This week the kids have had their spring break and we have been sneaking in some fun here around town as much as possible. We have been blessed with gorgeous weather in the low 80's. We often find time throughout each day to pause and just give thanks. A great friend who has had her own life altering struggles gave me the advice to "just find the joy in every day". We truly are...<br />
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In about 2 1/2 weeks, Kayla and Den will head off to Memphis once again. I get a lump in my throat just typing that. I just keep thinking that with each "all clear" we will feel some relief. But the agonizing truth is that at any moment our life could once again be turned upside down keeps popping up in the back of my mind. I don't think it's ever possible for it to truly go away. Every once in a while someone will ask me "When will you finally get to breathe? When will you not have to worry? When do you stop going to Memphis?" The answer is never. <i>Never. </i>When you have a rare, aggressive form of cancer there is always the possibility that it could again rear it's ugly demonic head. Stealing what normalcy we have built back up here at home. We never know, but hope and pray each day that she never has to endure a secondary unrelated cancer, or a relapse of her own. We pray that she is the symbol of hope to the 7 kids diagnosed each day and the sweet families scared and sobbing on their knees. Those not knowing where to turn that there is hope. Hope that you can beat this and go on to live an amazing life. I do hear of these stories and they surely fill us with hope!<br />
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So Kayla and Denny will return to St Jude for her 3rd follow up April 30th. Scans will be the 1st and 2nd. Hopefully after they hear those glorious letters "N.E.D." they will fly back home to us on the 3rd. The two days in the hospital will be filled. More needle pokes. More scans. MRI's. and another Lumbar Puncture. She will get More beads will be added to her Legacy Necklace. Her endocrinologist will make sure that her thyroid meds are working correctly. Hopefully this time Kayla and Angiel will get to see each other again. I know Kayla really misses her and can't wait to see how long Angiel's hair is now.<br />
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The good news is that only days later, we should be boarding another plane as a family to Hawaii on Kayla's much awaited Make-A-Wish! We can't wait!!!!<br />
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This school year is winding down. Anthony is reading small books. He is completely off of his training wheels and riding around like a speed demon. NO fear. He is doing fantastic. Also, he has started Tae Kwon Do with the legendary Master O. It's been wonderful for him!!! We are so proud.<br />
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Anthony has also been known to stop the ice cream truck to score treats...<br />
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Kayla has continued her piano lessons and hopefully will never ever give it up. Listening to her play is the highlight of my day. She is a beautiful pianist. I took a video the other night as she was playing so you could hear. This is her concert piece that she will play on May 31st.<br />
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Isn't it beautiful? I know there is nothing like hearing it in person... but I wanted to share with all of you special amazing friends. I am certain that piano is what is keeping her memory so sharp. This past week, I gave Kayla her very first "mini" trim. I was trying to cut off the fuzzy ends without losing any length. It's getting longer and longer! She wants to keep it short. It does look adorable... I don't care what she wants to do with it. She has even been known to sport a Mohawk on some days "while she can". haha! Sure... why not?!<br />
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I have noticed that certain things she has trouble remembering. Places we have been. Meals she has previously tried. Just little things. Even when I give great detail she just can't remember. As far as school, she is doing fantastic. I mean, with all things considered... I could never be displeased because no one tries harder than Kayla. She is a true people pleaser. Always wanting to do what she is told. Always trying so so hard. <br />
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Denny is doing amazing. Given how hectic his new schedule is. He is working full time and this semester was filled with three college courses. Of course his teachers adore him. He is always asking questions. So thirsty for knowledge. Taking every opportunity with each class to tie in cancer research wherever he can. I am as always, amazed by him. How he still makes time for me and the kids when he can. Needless to say... he has not had time to continue to knit. ;)<br />
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I have been pretty busy at work. I am just so glad that going back was like I never left. I am blessed with amazing people who continue to support and love me. They know my new schedule and understand when I might have hard days. <br />
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We are in escrow on a short sale here in Novato. It has every single one of our "wants" including fabulous neighbors. Leaving Drakewood was so hard because of the amazing friendship... more like family... that blossomed there. I have to say, nothing has changed. We still see our friends just as much which is a blessing. We are very excited about growing in a new house and creating new memories. I am dreaming of paint colors and what flowers to plant where. If any of you know about short sales, you know that they are not short! So we are patiently waiting for what is SURELY going to be worth it. The people who bought our house are SO happy. We have gotten the nicest notes through our realtor from them. It's so nice to know how much they love it there. When we can update more on the house we will. Promise!<br />
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I will keep you all posted on scans and any new changes here. Promise! For now... look at how GREAT our girl is looking!!!! In less than 30 days, she will be 9. What a blessing that is...<br />
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Kayla Rose's Mommyhttp://www.blogger.com/profile/03248768905832110815noreply@blogger.com2