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.