Feb 16, 2016 12:46am (Sara)
Maya will be getting her central line placed tomorrow as well as her first chemotherapy treatment. She will be getting a “power port” also known as a “port-a-cath” or “mediport”. This will be inserted into a chamber of her heart and she’ll have it for her entire treatment (about 2.5 years). This will be used for chemo and med infusions. She will still have to get “poked” for blood samples when she is back at home though. She will also get her second lumbar puncture but this time…it will have a chemo infusion. We actually don’t know WHEN the procedure will take place tomorrow. She will be NPO (nothing by mouth) at midnight but she might have to go most of the day with no food or water. Ugh. I’m afraid we’ll have a hungry dragon on our hands. There are of course possible complications but we’ll just not talk about those unless we need to. After today’s great terrible news, I was a wee bit giddy…then we sat down with the hematologist and I was pulled back to reality. Our family will have so many changes and Maya will have to deal with many things that little baby girl should never need to. She’s going to feel better soon but will be delicate for a long time. She has this amazing understanding of what is happening. She probably understands as much as we do. I’m sometimes in awe at what she will do. Today she just put her hand out for the RN to take her blood. I know she is scared but she works through things. It’s amazing. She has decided to call her new central line access her “boddah button” since it will be right above her boob and she calls boobs boodah. The nights have been difficult since I have to leave her and Scott. I can’t stay by her side and talk things out with Scotty. I miss them both so much. The mornings have been difficult because I have to leave Lincoln. I can’t stay and play and nurse and eat and read with him. I know he is a happy boy and my parents have been taking wonderful care of him…but I miss him during the day and want to be able to snuggle him. Maya also misses him. They miss each other. Our wonderful friend Amy S dropped off some things for us today. Its amazing how little we packed yet when asked if I need anything…I can’t think of a thing. I’m feeling faithful today and I know it is because of the people in my world. Thank you…infinity with all my heart.
By – Carol Manke|Feb 16, 2016 12:35pm
Little Maya is so strong because of all her family and friends. We send lots of love and many prayers.
By – Alisa Blackmore Thompson|Feb 16, 2016 11:59am
You are so amazing and strong and so is your little princess. I think about all of you daily and hope for you to be home soon.
By – Rachele Stephens|Feb 16, 2016 11:06am
Your amazing daughter gets her strength from her amazing parents! You guys are not alone, you have an entire army behind you surrounding you all with love, prayers and strength❤️
By – Trishia Haahr|Feb 16, 2016 10:09am
I just want to hug you. Maya is a strong little girl because she has a strong mommy and daddy. Your family is constantly in my thoughts and Maya is going to kick this leukemia’s a$$!!!!!!
By – Sandra Morrison|Feb 16, 2016 10:09am
Good morning my little family. I miss you so much. Every morning I wake up and you are the first thing I think about. Scott and Sara, I have always known what a remarkable team you are but to see you maintain such strength and ability through such a trying time as this is truly extraordinary. I am looking forward to your homecoming and being a part of Maya’s brave road to recovery. And Maya, your new baby cousins have so much to learn from you. Can’t wait to see you all together. Love you all so very much. Grandma Sandy
By – Jen Ben|Feb 16, 2016 8:20am
Maya is benefiting from your positive spirit, and that is a blessing for both of you. I hope the first treatment goes well today. You girls are amazing.
By – Rebecca Jolly|Feb 16, 2016 6:58am
Sara and Scott, your courage and strength are so strong. Maya is such a brave girl, and I am glad she has some spice through all of this. Good fighting qualities there! I love you all so much! Sending you every bit of strength, patience, and love I can muster!
By – Breanne Randall|Feb 16, 2016 6:57am
Sara…I just can’t imagine what you and your family are going through. I am so sorry. Your strength and positivity amaze me. Your love for your family is beautiful. I know we haven’t been very close these past few years, but I hope you know you have always been in my heart, and that I am here for you. If there is anything at all that I can help with, please don’t hesitate to ask. Love you friend – and hugs to you and the family.
By – Stephanie Arrigotti|Feb 16, 2016 2:01am
What an amazing soul she is. There is much depth in that child. Oceans of understanding that no one expects in a body so small. Much love and many prayers to you at the beginning of this challenging journey.
By – Matt Moore|Feb 16, 2016 1:37am
You guys are an amazingly strong family unit. You all have wisdom, wit, humor, and lots of love. All of which will serve you well on this journey. As always, your extended family, and army of friends are here for you, should you need anything at all. Love you all beyond measure.
By – Kathy Moore|Feb 16, 2016 1:26am
We love you all. Keep the faith sweetie. So hard on you all. It sounds like little Maya is being amazingly brave. Showing her brains too. Love always. ♡
By – Maria Arrigotti|Feb 16, 2016 1:24am
Oh Sara, John and the family and I just ACHE for you, Maya and your family. What unimaginable pain and suffering you are all going through. I can’t believe all they have to do to Maya’s poor little body. She is absolutely incredible. We just love her little spirit. Thoughts and prayers are with you always.
By – Genessa Dopf|Feb 16, 2016 1:19am
Sar I can’t even begin to tell u how wonderful u are. I admire your strength and am sending all my love to the whole family. U guys are going to get through this and will have support the whole journey. LYLASF
By – Adam Whitney|Feb 16, 2016 1:17am
She is such a strong light!!! I guess we know where she gets that from!!!
By – Kelly Schnaible|Feb 16, 2016 1:16am
Oh Sara, I wish I could just give you all a hug. The strength you all have is incredible. This great terrible news was definitely a blessing today. Just know the reality you guys will have to face will not have to be conquered alone. Sweet Maya, and sweet Mama, I’m thinking of you often and praying always. I will send good thoughts all day tomorrow. I love you!
By – Genessa Dopf|Feb 16, 2016 1:15am
I’m am amazed as to how strong my little angel Maya is. I hope I can be as strong as her! Love u baby girl
By – Megan Johnson|Feb 16, 2016 1:13am
Your posts are beautiful Sara. I feel like I’m there with you. What a strong, amazing mother you are, juggling your two little human worlds. I’m here always. Love u all.