Saturday, October 27, 2012

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!

Tuesday, October 23, 2012

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!

Tuesday, October 16, 2012

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!


Saturday, October 13, 2012

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.

Thursday, October 4, 2012

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:)

Wednesday, October 3, 2012

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.)

Tuesday, October 2, 2012

October the 2nd

Today was my MRI, and so I was pretty nervous obviously.
 IV in!
 IV out!
So I had the MRI today because of some headaches I've been getting lately. Therefore they were concerned that maybe I was having inter-cranial pressure from swelling of my tumor, but there isn't, so woohoo! They said it was "better than expected response to the treatment" which is great!
I also noticed today I finally have feeling in my fingertips and my lips again. Which is awesome (obviously!) Tomorrow morning is my last steroid. HALLELUJAH!
Still waiting for blood work on Thursday to know when the Chemo starts again because of toxicity in my liver. Today has been very hard. Very long. But also very exciting because of the news, it's just hard to be excited sometimes when you're nauseated. Oh and the hair situation, I basically have close to less than half my hair left. 8 bald spots (from each beam of radiation there is) around my ears and such. So I don't know what do with it, suggestions?
Thanks so much for the prayers and support. Honestly they are needed, answered, and felt especially today.

Monday, October 1, 2012

6 treatments left!

Oh hey, it's Rachel again!
These are my buddies Kaiden and Luz, on our wait for the shuttle bus. Aren't they the cutest!? Yes they are.
 Getting my blood work done in Assesment Triage.
My amazing cousins daughter sent me a hug, so guess what's on my door? Bentlee's hug of course!

Today I stopped chemo probably for 2 days (lots of uncertainy this point), but I'm still continuing my irradiation. I guess it has finally taken it's toll on my body!

Tomorrow I have an MRI of my brain at 6:30 AM so it's time to cash it in. For there will be an IV in the morning! Aka- another needle poke, hooray!

Night ya'll!