Hi everyone! BIG news. We will be leaving for St. Judes Tuesday morning! How crazy is that? We have 3 days to get a LOT accomplished.
Recap:
I kept the phone on me at all times. This was a call I couldn't miss. Before too long, I heard the phone ring and saw "Memphis TN" on the caller ID. It was Tabatha! We had such a lovely chat. She is the sweetest woman (who also has two twins the same age as Kayla). When I was on the phone with her I never once felt rushed. She took her time and explained everything in
detail. She made me feel like we were their only patients. Tabatha said that their pathologist confirmed that it is indeed medullablastoma. Her doctor will be Amar Gajjar whom I have heard SO many amazing things about. I have received so many personal emails about this man! I know we had the perfect surgeon in Gupta. Now I know we will have the perfect doctor to make sure that "bump" never comes back. Medullablastoma's are his specialty! They treated 400 patients successfully just in the last year with that particular type of tumor! I know that she will be in great hands with him. Also, Tabatha told me that he is very kind and super energetic. She said the kids really really like him. (Don't worry Dr. Yamaguchi, no one will replace you in our eyes! However, I doubt Kayla will ever beg you to give her a shot again after all of this... Yes, she really did beg him! Remember? It was when she heard that little boy in the next room screaming and carrying on? She was determined to be brave and take one for the team!) Only Kayla!!
At the end of the call, I realized that I hadn't had a pencil to jot it all down, but she reassured me it would all be summed up in an email. How lovely is that?? So, here is the plan:
Overview of what we discussed on the phone:
When you arrive on Tuesday , A shuttle will pick you up at the airport to bring you to the hospital. You will come to the hospital first to patient registration to formally check in for the first time. Patient registration will formally activate her electronic record, get her an armband and go over any general hospital consents with you. They will also have the on call MD briefly meet with you to make sure that Kayla is doing well and does not need anything for the night. Once you have completed these tasks, they will have the shuttle get you over to the Grizzly House for the night. They will give you a copy of the schedule for Wednesday prior to sending you over to Grizzly House.
ON Wednesday, you will begin the day by checking in with patient registration to get a new armband which will also be the process for each morning. They change the armbands daily so that we can account for how patients are actively in the building each day. Your first appointment is with Assessment/Triage which is primarily to check Kayla's vital signs and get her weight/measurements. Once that is complete, they will get you over to the clinic to meet with Dr Gajjar and his team which includes Elizabeth Barnwell,PNP and Dorinda Schumann, RN. Kayla will also have appointments with anesthesia , social work and patient services orientation on Wednesday. Her first week here will be super busy and a little overwhelming, but I promise things will get better once she gets on treatment. Just remember that we are here to support you no matter what and we will help you get through all of this.She is going to have her MRI Brain and Spine scans with lumbar puncture on Thursday with sedation. The nurses will go over the instructions for sedation before you leave the clinic on Wednesday afternoon.
You will start out your stay in Grizzly House then be moved up to the Ronald McDonald House after your patient services orientation. Housing is for a total of four people including Kayla. We will also assist with meals for Kayla and one parent during the duration of your stay. The weather is a little chilly here now so bring some warm clothes and bring any comfort items that Kayla likes to keep close.
Please have a safe trip and a great weekend,
Thanks,
Tabatha
When you arrive on Tuesday , A shuttle will pick you up at the airport to bring you to the hospital. You will come to the hospital first to patient registration to formally check in for the first time. Patient registration will formally activate her electronic record, get her an armband and go over any general hospital consents with you. They will also have the on call MD briefly meet with you to make sure that Kayla is doing well and does not need anything for the night. Once you have completed these tasks, they will have the shuttle get you over to the Grizzly House for the night. They will give you a copy of the schedule for Wednesday prior to sending you over to Grizzly House.
ON Wednesday, you will begin the day by checking in with patient registration to get a new armband which will also be the process for each morning. They change the armbands daily so that we can account for how patients are actively in the building each day. Your first appointment is with Assessment/Triage which is primarily to check Kayla's vital signs and get her weight/measurements. Once that is complete, they will get you over to the clinic to meet with Dr Gajjar and his team which includes Elizabeth Barnwell,PNP and Dorinda Schumann, RN. Kayla will also have appointments with anesthesia , social work and patient services orientation on Wednesday. Her first week here will be super busy and a little overwhelming, but I promise things will get better once she gets on treatment. Just remember that we are here to support you no matter what and we will help you get through all of this.She is going to have her MRI Brain and Spine scans with lumbar puncture on Thursday with sedation. The nurses will go over the instructions for sedation before you leave the clinic on Wednesday afternoon.
You will start out your stay in Grizzly House then be moved up to the Ronald McDonald House after your patient services orientation. Housing is for a total of four people including Kayla. We will also assist with meals for Kayla and one parent during the duration of your stay. The weather is a little chilly here now so bring some warm clothes and bring any comfort items that Kayla likes to keep close.
Please have a safe trip and a great weekend,
Thanks,
Tabatha
Ok, that's it for now. I know that soon I will have a LOT to blog about. Thank you again to all of you for being so gracious and kind. We are such a lucky family. I just know that only good is going to come of this. Love you all! Good night........
Wow! I have always had a positive impression of St. Jude's, but it is wonderful to hear this first hand account of how they are caring for your family. I have felt a sense of relief since finding out where Kayla will be treated and we will continue to send our prayers and POSITIVE thoughts!! Remember that the kindness and caring you are receiving is because of all of the goodness that you have added to our lives! xo
ReplyDeleteAwesome! I can imagine the relief you must feel having a plan and knowing you're all in such expert and caring hands. What a huge help to have the daily living details taken care of, not having to organize all of that, able to focus completely on Kayla and her recovery. Best wishes for a smooth journey to St. Jude!
ReplyDeleteLove and hugs from PA! Auntie Ann
OH HOORAY That is fantastic news! I know knowledge is power for people like us. Kayla and your family are never far from our thoughts, now we get to sit back and watch miracles unfold. We are so thrilled answers came sooner than later and a plan has been delivered so you can do what a "WIZ" does best, put the PLAN in motion. Sounds like uou are in the best hands, I would expect nothing less from St. Jude's. I'm so happy for you all, you better get busy sista, you have a lot to do! Much love The Pahland's
ReplyDeleteThis IS BIG NEWS!
ReplyDeleteI have to tell you, Annie, just reading your blog really does put me at ease through all of this. To know that Dr. Gajjar treated 400 of these same type of tumor patients successfully last year takes away so much of our worries. I keep hearing from everyone that St. Jude's is their favorite donation place, and now I see why. Such a relief to know she's in the Best of Hands.
Kayla is so very lucky to have you and Den with her during all of this. Sometimes I look at Denny now and I see myself in the room. That's very comforting to me. She's in awesome hands.
Love you & see you soon. Our visits now are even more precious than they EVER were.
Love,
Cheri/Mom/Neena
Have a safe trip . Just know we are all thinking of your journey
ReplyDeleteIt was so great to see Kayla yesterday at the salon.
She looks so brave and sweet . She really filled us up with hope and Love and ended our feelings of sadness . We are positive now and we also thank you and Denny for coming in and showing us first hand how strong parents can be . We will miss you and will count the days till your return,
Love Valerie-
Annie and Denny, I'm so glad that all has come together and you didn't have to wait until Monday to see if the slides had arrived before the plan was put in action. They sound as competent as I've always heard about St. Jude. I know you are in the best of hands. How wonderful that the doctor has had 400 patients with the same thing that Kayla has. He has a lot of experience behind him. Safe travels and go with our prayers.
ReplyDelete