Let it Snow!

I'm loving the snow outside. It's what makes me sooooo happy in the winter!  Well anyways, last week my GGT <--(an enzyme your liver releases when it's toxic, as mine has) went down, it went far enough I was able to start my chemo again, BUT I had to move down to the lowest dose. Which is bad, because now if my GGT goes up for another 7 days, then I'll have to stop the Crenolanib<--(my chemo) for good. And obviously that's not a good thing, cause it's my only treatment level left to be able to stay in the clinical trial at St Jude. So anyways this Wednesday, I have an appointment with my Primary Children's doctors, I guess just to get my blood drawn, and they'll probably do a neurological exam. Then it'll be Christmas, then we go to Hawaii on the 30th, then January 13-15th it's back to Memphis! So there's the updates, thank you for the prayers! They're always welcome, not to mention needed!:)
Rach

11/27/12

Okay so last time I said I almost had to be taken off for a week, anyways, I take a week off of chemo.
Which is fine by me (means less nausea on my part) but isn't good news. Anywho, it only made us more curious to see what the results of this Mondays blood test would be. So again it was high, 3rd week in the row. Luckily I have one more week left that I can be off until they have to drop my dose to level 2 of the chemo.

I kind of thought it would be a little break on my body since I wasn't on chemo, therefore a little holiday gift, but it definitely hasn't been. I guess there are still some drugs in my system that I'm not even taking that make me sick and give me horrible headaches, and make me feel like I'm going to pass out. So I've spent lots of time in bed recently. But on a happier note, I got my honey baked ham on Thanksgiving. It was delicious.
I think God knew what he was doing when he gave me cancer, but I don't think cancer knew what it was doing when it started attacking me.
Oh and we're going to Hawaii on December 30th, for those of you that keep asking!

 Anyways the girls, leaders, and many others in my ward did a Festival of Trees tree for me. It's very cute!

It's probably a really good thing I have this little clone of me, since I happen to have a lot of free time. And the others in my family, I just really like Jordyn.

YAY!

So after a long day of appointments today, okay it wasn't that long. But anyways after all my appointments I am pleased to say that my tumor has.... (drumroll).... SHRUNK EVEN MORE! Not that much, but hey, I'll take what I can get! It's an answer to my prayers, and for that, I'm grateful:) All of my doctors, my RO, NO,  Speech and swallowing therapist, Physical therapist and all of the nurses are so impressed with my improvement, especially when they found out I ran that 5K. It's kind of exciting to see them so impressed.
Anyways, Dr. Broniscer said this is the part that's always out of their control, because I'm still on the chemo (I almost had to be taken off for a week because my GGT, (liver test) is about 7 times the average persons) So hopefully the chemo will kill the tumor because it's still alive, and DIPG tumors are very aggressive. So we're still hoping and praying this chemo will kill the tumor, and all will be well. But whatever is in the plan for me is what's going to happen, so I'm not about to fret. Anywho, just thought I'd update ya'll since there has been so much support, and many prayers. Thankyou!
Love ya'll,
Rach
PS, I got my second flu shot today and I made my mom get one too! Watch out, Dad, Lauren, Devin, Heather and Jordyn, you're next!

In the airport

So Diane and I are in the airport because she always has to be extremely early. So once again I am bored out of my mind so I decided to update this old thing. So this week we're going back for a bloodtest, and an MRI. Which is rather nerve racking, considering the news could be really good or REALLY bad. So we're praying and hoping it's really good, because I'm sick of bad news:)  Luckily we only have to go back a few days, and we'll be home Thursday afternoon.
So anyways people ask me how I am a lot, and about my current condition. So my answer is, Good! For the most part. Recently I have been having a few good days, and then a bad day, then a few more good days then a bad. "What is the bad day like?" They ask in reply, in which I say, "mostly just sick to my stomach, I'll throw up, but basically just laying in bed all day."
The truth is, I'm worlds different (in a better condition) ever since I've been home for the most part. I think there is a healing aspect to the home, something about being there. Or maybe feeling comfortable helps healing. Or perhaps I'm just crazy! But anyways, I could hardly hold a conversation let alone say one sentence/write on my blog at that time at the time I was leaving Memphis. But ever since I've been able to be home and with the people I love, I'm back to my normal, chatty, sassy self!:)
Anyways, this week I've been getting super excited for Christmas, watching all my Christmas favorite movies! I'm definitely not one of those "no Christmas til after Thanksgiving" kind of people. Although I do like Thanksgiving, but I don't like turkey. Lucky for Honey Baked Ham!

But anyways, I'm just severely bored sitting here in the airport... see!  But this next MRI really is scary. PRAYING and hoping for good results. Feel free to do the same:) And thanks so much for all the prayers and service that have already been given, SOOOO appreciated. I feel it all the time. There really is such a special power about prayer, that is a feeling I can't describe when you're on the receiving end of so many. So thank you thank you thank you!
I can do hard things!
Rach

November 9th

So my wish got granted, and I'm going to Hawaii with my whole family. So my wishgranters Tiffany and Beth threw a surprise party to tell me! It was exciting:)

 All my friends that came!

 Me and coach Camie!

 These next pictures are from the Run for Rachel 5K. (Which I ran) I'm still sore! and it was 6 days ago! Okay, I'm not still sore, but you get the picture!

 Above is a man from Harmon's who gave me a 1000 dollar check!

 Me and Jordyn

Gary, Andy, Me and Camie, they were the awesome ones who threw the race for me. (Andy and Camie are my coaches, and Garrett's a friend from track and cross country!)

Home again!

So we went out to Memphis again Wednesday, and things are looking up! Like my blood levels are really improving! Even the GGT count that had to do with my liver that was way off, is now almost back to normal! Anyways we had to stay in the Ronald McDonald house which was kind of a bummer, but it's okay because it means I was able to see savannah again! So that was a really good thing.
But we ended up doing 3 pokes in 2 days. It's a long story, but I now have a few more bruises and whatnot, anyways it was way fun to get to go and do that 50th anniversary interview with Jordyn for st Jude! It was 40 minutes long, and definitely a new experience!  We weren't too smooth at asking and answering each others questions though!
Also these pictures backtrack quite a bit, but oh well.

 Maddie, Me and Jordyn my first day back

Diane, Jordyn, Me and Heather my first Sunday back, I look super happy!;) 

 Heather and I on a regular basis

 A tiny toilet Savannah showed us that's in the Ronald McDonald house!

Jordyn and I

So yesterday we were able to come back home again and I was so happy because it was such a small trip and there will never be another 7 weeker! (Hopefully) Anyways, I really love the season changing, and the snow, and the leaves. Basically I just love the fact that I'm no longer in Memphis, not that it's a terrible place, it's just not one I prefer. They always have people donating and volunteering to do things for the families of St. Judes, I even got a 500$ piece of luggage, and new cell phone! It's actually kind of incredible how many volunteers that place gets. It makes me grateful that I was selected to be treated there! The trip wasn't too bad at all, besides the plane ride home had lots of turbulence, which Jordyn absolutely loves (who knows why?) but all in all, it was fine! Diane feels like we're living a double life, which i agree with! But I'd rather the double life than the single one we were living in Memphis there for a while! Anyways, I need to go find a Halloween costume for the ward party tonight! So long!

Round 2!

So after an amazing week of being home and catching up with friends and family, it's time to return to Memphis. We fly out tomorrow, and no "we" does not only mean Diane and I, it means Jordyn, Diane, and I! I'm way more excited this time since ill be back Friday afternoon, and my twinigans comin with! That makes it a lot easier for me!
So I'm way happy ill only have to do little short trips from here on out.
Yesterday I did my favourite trail run with my friend Summer, even though I'm sore, it was worth it!
Time to finish packing! Hopefully everything goes well!
Rach.

October 16th

Wow! It has never felt so good to be home. Although things are still going on, and life keeps happening, it's still been so awesome to be home. Anyways, I still get nauseated, but for the most part it's usually just after chemo.

Anyways, Diane mentioned the make a wish, it was SO cool! We went up to The Wishing Place in Murray to declare my wish. It really was an awesome experience.

Today I went to my pediatric Dr. after having a blood test. But the truth is I don't really understand too much of it. But things look and seem to be going well for the most part!

So good to be home! I can't say it enough!

Rach

Home Sweet Home

 Diane here.

Rachel and I had company that came on the 5th and then her dad on the 6th and they were all here with us till the day we came home so we were so busy (which is good) but she did not have time to post anything so I will attempt to update our last few days of treatment and our first few days home and then turn it back over to Rachel to share her thoughts.

Kendall and Rori  (Rachel's aunt and uncle)  came for a visit.  

So, Sunday Oct 7, Rachel went in for another blood test to see if her liver function improved enough to start the Crenolanib.  Though her numbers improved it was not enough to start and that meant another needle stick on Monday and a permanent lowering of her chemo dose for the rest of her treatment.  This was a bit of a disappointment for us (she was currently on the optimum dose in the study) but then we decided that perhaps our prayers were answered and that the right dose for Rachel is the lesser amount.  We have had so many miracles already take place and there is One who is the greatest of all who knows what is best.  We must have enough faith to trust in the Lord and not become discouraged.

Monday, Oct. 8th of course began in Assessment/Triage with another blood test. Today it is also our final appointment with our Oncology doctors before we go home.  I have to admit that I had to fight off  the feeling of fear that our return home may be delayed due to the complications with Rachel's liver.  We were given the lab results and the blood test showed more improvement but still 1 number too high to restart the chemo. You know what that means, yes another blood test tomorrow.  With  company and transportation we decided to go to the Memphis Zoo again, we really needed a break from needles, doctors and cancer talk.  

Tuesday Oct. 9th, LAST DAY   What better way is there to start your day out with another blood draw. This test would be the 4th blood draw in just 6 days and the arms are getting tender but Rach took it in stride.  No one at St Jude knows the fear of needles that she has always had. Rachel has developed a great deal of courage not to mention compassion for others in this journey.  With this being our last day in Memphis (at least for this treatment process)  we are really praying for the right thing to happen.  The call came and her numbers dropped by 4 points and Rachel is able to restart  her chemo again after going 8 days without.  It may be at a lower dose but it feels right.  Oh and yes, today is the 30th and final irradiation treatment definitely a time to celebrate.  Rachel gets to bring her mask home just in time for Halloween.  We really get to return to Utah and as exciting as this is, life has gone on at home and school without her and there will be more trying days ahead, playing catch up with school and trying to fit back in with friends.  The medications and treatments have really taken a toll on her body (and her hair even though you can't tell from her pictures) but through her faith and testimony she will become better from challenges that she has endured and sacrifices made.

Diane, Rachel (holding her mask) and Chad.  No more irradiation treatments, a day to celebrate.

We forgot to mention, a flu shot as a going away gift!  The only needle that actually made her a little nervous.

I know that many of the pictures that Rachel has posted prior to this make it look like she is having a great time on vacation but that is what we call, "fake it till you make it".  The real truth is her whole life has been shaken, she wants nothing more than to be her old self and to be at home with friends enjoying her Senior year at school and instead she is battling for her life down a very lonely road.  There are but a choice few who really understand the sacrifices that she has had to make. I (and I know that Rach is with me on this one) want to thank those of you who continue to pray for her, so many of you have shown your support in letters, comments and  genuine friendship.  There are many of you around the world who have blessed her through your kindness, cards, letters, gifts and words of support even though you have never even met her. We count you as another one of her miracles.  So many at home have taken care of our family in our absence.  We have truly been the recipients of so much kindness, love and generosity. There are not words sufficient to express the blessings that we have received and the gratitude that we feel.

                              

Our family together at our favorite restaurant, Mama Chus (we recently found out that they have been donating to St Jude for years, which only makes us love them more.)

Our amazing ward and neighborhood had a grand welcome home for us.  Every home in our two city block area created their own welcome home sign while amazing young women added balloons and yellow ribbons.  The pictures were too numerous to post but we wanted to show you a few as well as our own home and that was the icing on the cake.   As family have come to visit us they have shown up in tears because of the overwhelming emotion they felt as they saw the neighborhood adorned with balloons, ribbons and signs everywhere, yes they were able to feel of that same love that has sustained us in this time away from home.

                            

       This is how our home looked when we arrived after dinner.  We are definitely loved.

Friday, October 12th, we met with the Make a Wish Foundation but I will save that one for Rachel.

3 More Treatments!

One less treatment, one day closer to home.  We got the results of my ultrasound,  everything was normal, and my blood test shows improvement but not quite there yet, so guess what that means!? Another needle on Sunday.  I guess that means still no chemo until then.  If you see scars on my arms just know that I have earned everyone of them and have lost count of how many needle sticks that I have had, gave up on the legacy beads long ago.

 My lovely bedtime apparel.  I have a cold and apparently this scarf acts as my personal humidifier, who knows!? Diane says that at least I don't cough thru the night when I wear it.

 The pyramid! Which is going to be a bass pro shop apparently!

 Today we had a little bit of a break, so naturally we went on a walk, and to then my favorite garden area!

Oh yeah we got decorations today! See!

Anyways, as I already said, my liver seems to be doing better. So we're hoping I get to start my chemo again on Sunday.
Even though I feel nauseated, and have a headache, I get up and do things, that's probably what keeps me going!  I feel so blessed today for all the good people at home and here and the Dr.'s who keep me goin! Tomorrow I only have radiation at 8:45, so hopefully I'll be in and out in a flash, and we'll have the rest of the day to spend to ourselves!! I'm excited for the weekend, or hopefully a little break from appointments!
I do hard things, but I'm not doing them alone.The Lord has blessed me with so many tender mercies through this trial. He is the only reason I believe this incredible technology and things work. The medicines and everything may be healing my body but I know it's through him that we are truly healed. Also everyone has been so supportive of me and my family. And we are so appreciative.  Thank you tons:)
-Rach

4 Irradiation Treatments Left!

Today started out at 9:00 with a "Speech Swallowing Consult", which was a breeze! Then I went to radiation again at 9:45. 

"US Renal ultra sound" I had done this morning.

 Attempting to run on the Playground of Ronald McDonald

 Our wonderful view;) Can you see St Jude?

 My mailbox

 Kitchen artwork

 The kitchen

 The meditation room

Our laundry room

Tomorrow I will get the results of my ultrasound and oh, I have another blood test. Party! If my blood test is good then I will go back on chemo. If not... well then I guess we'll have to just wait and see tomorrow! Did I mention that I took my last dexamethasone today!!! (I know I did yesterday, it's just really exciting.)
Anyways,
Rach