Monday, November 28, 2011

Movement Monday

Since this horrible nightmare began, it always seems like we have been kept on hold every weekend. I have never been so anxious for a Monday morning as I have the past few weeks.

Today, we got a lot accomplished! We ( I should say my angel, Donna ) got a hold of the main coordinator for St. Judes, Tabatha. Donna couldn't wait to call us and fill us in on all of the positive information she learned about this AMAZING facility. She explained to Tabatha that she is an RN and is advocating for our family. (Best friend for over 30 years she will soon find out.)  She said that Tabatha was SO kind. She pointed out a TON of positive things about Kayla and her case. One being that she was "over the moon" that Dr. Gupta had removed the entire tumor. This is huge in her prognosis. Also, another plus is that as far as the treatment will go, Kayla won't be starting Chemo until spring so the cold and flu season will be over. That is great news as well.  Tabatha told Donna that we can start packing. That we have "verbal" confirmation that St. Judes will be accepting Kayla into their amazing treatment program.

Here are the details that we know so far. (This is all subject to change as you all know) Towards the end of next week, we can plan on us (Denny, Donna, Kayla and I) flying out to Memphis, TN. to begin our first steps. Here is the email from Tabatha describing what to expect:
The first week here will be used to do her pre-therapy workup which includes MRI Brain and Spine, NM Bone scan, Lumbar Puncture, labwork, radiation therapy planning and simulation, audiology exam along with consults with all of our auxiliary departments. She will have consultations with nutrition, anesthesia, physical and occupational therapy, speech therapy , child life, etc. Our goal is to make sure on the front end that we know what she needs to fully recover from surgery and to be her best. We know that you can not just treat a brain tumor, you have the treat the whole child and the family.
The first part of therapy is Radiation Therapy which is 6 weeks (Monday through Friday) and it is given outpatient. If she needs any therapy post surgery then we will set that up during this time. We also have the option of providing school assistance for her while she is here through our school program. They will work with the local school system to set up her curriculum here to keep her on task while she is here. I will set up a consultation with our school program coordinator for the family to discuss the option and decide if they want to pursue that. Once Radiation is complete, we will repeat her imaging prior to her going home for an approx. 3 week break. When she returns, she will be here for the 4 months of chemotherapy with stem cell transplant. I can discuss this process over the phone with the family if they would like more details on how this works. Once therapy is complete, she will have end of treatment imaging then she will come back every 3 months for follow up which is usually a 3 day stay.
Housing is up to a total of four people including Kayla. We leave it up to the family to decide who the other three people are and they can swap out if they need to during her treatment. We will also provide meal tickets for Kayla and one parent for the duration of their stay vs. a Kroger card to purchase grocery items if they would like to cook at the Housing facilities vs. eating here. We will cover the flights for Kayla and one parent for round trip flights for each visit here. Patient services will go into more detail about these things when they arrive.

Tabitha told Donna that she sees so many families call in interested only to find this all, and I quote, "so inconvenient". REALLY??? None of this has been convenient! What parent wouldn't travel the earth in search of what might give their child the best chance at survival? There isn't anything we wouldn't do. Yes, it will be hard. Yes, it will be inconvenient. Yes, we will pretty much lose our incomes. Yes, we will FIGHT and figure it all out. That little girl is worth whatever it takes.

So, that was just my morning! I told you it was a productive day. Later in the afternoon, we took a drive down to Terra Linda Pediatrics to see some of our most favorite people in the world! We needed to have Kayla's sutures removed from where her drain was stitched in at the top of her head. She was a trooper. I think she is taking the pain well considering. She is at her tiny wits end. It's a good thing she is finished w/ surgery as we know it.  We had a nice photo-op with Dr. Yamaguchi and Sunny! God we love them! This office has become like family to us. I have to say, that one of the most amazing things about Dr. Yamaguchi is that he has never once doubted my mothers intuition. If it weren't for him listening to me and trusting me, we might have had a very different outcome here. I keep reading and hearing the sad stories of doctors ignoring the symptoms and chalking it up to different things. He expedited every single appointment. We wept in his arms the day we found out. We know that soon we will be back for "normal" check ups. We love you guys!
 Doesn't Kayla look THRILLED here? She was NOT happy about having those stitches removed. They did not tickle at all like Maggie had told her! Let's do a "re-take" after all of this, ok?

How is Anthony? well, he is doing great! We are so lucky to have such a wonderful team of teachers, friends and families all keeping things normal for him. Here is one of the reasons I LOVE Karen Beckmann - one of Anthony's amazing teachers (another angel):

What about Christmas? Yes, we will be in Tennessee. He will FOR SURE be with us for Christmas. From what Tabitha told Donna, that is the place to be at that time of year. Special treatment galore. All the celebs come out and bring surprises for the kids. I will make sure to take lots of pics, don't worry. I just hope Kayla smiles in those. Sheeeesh.

The agenda for tomorrow:
We have a big appointment at 9am back at UCSF to get the entire pathology report. We only have 95% of it. It won't change the treatment or the diagnosis. We need a complete copy to send to St. Judes along w/ all her records and MRI discs. So, it's off to bed for me in a few.

Good Night. BIG HUGS!!!

~Momma Bear


  1. Wow, what a complete turn of events! This entry was appropriately named, Annie & Denny. Congratulations on the acceptance into the recovery center of your choice. You're all so brave to take this leap of faith into healing. And in another State! We are all going to miss you during the six-week period so much, but we will also be there in spirit for Team Kayla. Love you infinity & beyond!


    Neena & Baapaa

  2. Annie, I'm so glad that St. Jude's accepted Kayla. I'm sure that is right where she needs to be. It sounds like they have all the steps worked out for you. We will miss you here for sure. I'm very proud of you all. Susie

  3. Wow.... St. Jude is an amazing place it sounds like and wonderful care for your family and especially Kayla. Your in my prayers everynight. Keep strong and she will make this journey through with flying colors.

  4. Wow! This is amazing. We wish you all the best. Hugs, The Schnabalovoz Fam

  5. It is so great to hear this positive news! Always in our thoughts and prayers! Hugs, hugs, hugs!

  6. Your angels keep showing up and will continue to do so. Sooo many people are on team kayla.

    Much love and prayers,
    Cathy & Walter Carle and.....

  7. Wow! So glad you're getting into St. Jude. What a wonderful place! My godmother, Judy, lives in Memphis (and she's an RN) so if you need any additional links in Memphis, or support, let me know!

  8. OMG I immediately called Mike on his way to work, we are so thrilled and happy that she is going to be in the best place possible, the place that you had hoped for! Prayers are being heard and answered, what an incredible opportunity for health and wellness physically and mentally for the entire family! And HUGE THANK YOU Donna for being so amazing and advocating for our friends, we will never be grateful enough! Over my long relationship with this amazing couple (12 years) I have heard so much about you, I hope to meet Kayla's "Guardian Angel" some day! Today is a GOOD DAY! Congratulations to the entire family, and OH BOY is this Christmas going to be most special for you all! Love Jayna

  9. I am thrilled about this new update. Kayla will be receiving the very best of care. Annie, you are right this little girl is worth any temporary sacrifices. As all of you set off on this journey of healing know in your hearts that rest of us on Team Kayla will be here keeping the home fires burning. We love all of you immensely and continue to be here for you in whatever capacity you need. I am sending you big cyber hugs.

  10. Great news! Need some art supplies for the trip?
    Carolyn and Neil

  11. Amazing news!!!! I'm so glad you guys are going to be in such great hands, and in a place that knows exactly what Kayla needs on many levels.

  12. Hi Annie. I'm Suki (Donna's friend), just wanted to let you know we are all praying for Kayla. And also wanted to thank you for this blog on keeping us updated on how Kayla is doing. We met her this summer when Donna picked the kids up to take back with her to LA, and she is one sweet girl :)

    Let us know if we can help in anyway...
    Sending hugs and prayers...

  13. Hi Annie and family, this is Gina (Donna's friend). We live in Nashville now and are about 3 1/2 hours from Memphis. If there is anything we can do for you or if you just want a break from Memphis and can get away for a day or two with Kayla, please don't hesitate to give us a call and come visit. We are praying for Kayla and your family!


  14. Wow, exciting news. We may have some miles that you could use to fly out there, or for other trips, and maybe other people on here do too. You might post what airlines you are looking at and see what we (collectively) can do!!! Everything helps, and we'd love to spend our miles to send Kayla to get better than on silly magazines!!! Our best to you all! Leslie, Randy, Keira & Cam

  15. This is amazing! Being a former stem cell transplant RN, the programs at St Jude sound like a God send! Kayla will be in the best hands. To Donna: You go girl! :)
    Love you all!
    Diana, Tomaz and Isabella

  16. Annie,

    You are a strong and wonderful woman. I wish I were in California to help. If you need another shoulder to cry, vent, anything on you call me!!!!!! You are surrounded by people who love you and Kayla is getting top notch care. It is going to be a rough bumpy road this next year. I pray that when you are dancing at Kayla's wedding this experience will be distant memory. Your scrapbook idea is great and from personal experience very cathartic to do in the moment and something for Kayla to have in the future. She is a fighter! Remember to take care of yourself and for you and Denny to love one another and take time for each other. The rest of the world can wait on hold while you take care of your family because nothing is more important.
    I just mailed something special I made for Kayla to give her strength through all of this. I know the blog is cathartic for you and it has been important to me and all the people who care about you and your family.



  17. YES!!!!! PTL!!! Prayers are already being answered with Kayla's acceptance into St Jude's program. It is the BEST---providing phenominal physical care as well as the healing support for her and her family starting from day 1 all the way to recovery & discharge home.
    One of the hardest things for you, Annie and Denny, will be to realize that, for reasons only God knows, this is Kayla's battle to fight. You can and will walk with her and at times try to carry her on this hard journey---but ultimately you cannot take or make any of it go away. You can continue to do as you already have.....Ensure, to the best of your ability, that she is provided and given the best support and opportunities to successfully win the war! Each of you must take good care of your 'self', and of each other in order to be the best leaders in Kayla's war. She's a strong Warrier Princess who has endless number of soldiers....and angels with her.

  18. Your blog posts are always so eloquent Annie - I think you were destined to be a writer! Although we all know what a wizard you are with the sissors too. ;-)

    I am so excited to hear this latest news because to me it means Kayla will be A-OK! As you know, my family has been through this too, even the stem cell transplant for my mom and she will be 3 years cured in March! Therefore I know Kayla will be OK - I am confident of it!
    Hang in there momma bear! I think at this point, the universe has got your back.
    Erin S.

  19. Dear Annie,

    I'm Emily Raaka's uncle and Mary Hoburgs brother and leaned of beautiful Kayla through them. I just want you to know that she is most certainly in my prayers and that I think St. Jude's is the greatest in the world. The people there, as you've experienced so far, are the best!

    I just know that Kayla will keep getting better and better.

    Best wishes for all of you,
    Chuck Regal (also Mary & Frank's next door neighbor!)