Monday, September 30, 2013

Day 18 Post Op

Team, lots here: Delaney slept much better last night. She probably slept a total of 6 hours off and on. She ate 2 bowls of Cheerios at 5am and was still hungry for 2 chocolate milks and some pancakes at 7am. The neurosurgeon came through and decided to give her a few more days before they remove her stitches, which means chemo won't start until Monday, October 7. PT came in again and she was not very cooperative. We got her to sit in a little red chair for about 10 minutes. She is getting a little stronger each day, but still unable to hold her head up. Grandpa brought her a large chocolate milkshake for lunch and she drank the whole thing! She had her eye exam. The same opthomologist who examined her the day we found out she had a tumor examined her today. He was amazed at how flat her optic nerves were, because the last time he looked at her eyes he told us her optic nerves were severely inflamed due to hydrocephalus. She also had a hearing test, so she had to be wheel chaired over to another building. That was a chore in itself as she is not very cooperative and still wants to be so independent. The ear doctor said her hearing is within normal limits and he doesn't see any issues. Grandma and brother came for a visit. Delaney and brother laid in her crib, ate Cheetos, snuggled and watched Despicable Me. Brother is really what lights Delaney up. From the second she sees him she is so happy and smiley! It really makes mommy and daddy proud to see our beautiful babies love each other so much! Tomorrow Delaney gets her broviak in, gets a lumbar puncture and will get her feeding tube changed from the right to the left nostril. We will most likely be moved from the PICU to the pediatric unit on Wednesday. We have really grown to love our PICU nurses and will be sad to leave them, but hear nothing but wonderful things about the pediatric nurses in the ward. Delaney finished off her night with a cheese pizza and will have to stop eating at midnight. We will make sure she gets at least 1 chocolate milk before then.

Again we thank you all for your love, support and prayers. Delaney is a fighter! GO TEAM DELANEY!

Quote of the day "let your faith be bigger than your fears"



TEAM DELANEY Fundraiser

TEAM DELANEY! We have be flooded with many request of how people can help Delaney and their family through this difficult time and up coming year. In response to everyones demand we have created a youcaring.com fundraising page. Delaney and her parents will be in isolation once her chemotherapy starts and many of you just want to help with food, gifts, and anyway you can. Therefore, I am happy to announce we just went LIVE this morning with a website if you would like to donate. All proceeds will go to help in her treatment, physical therapy and any cost related to getting Delaney well again. Thank you for everyones support we cannot do it without all of you. If you have any questions please feel free to contact TEAM DELANEY directly by message or by phone at 925-337-3371 Love, Uncle Travis

www.youcaring.com/medical-fundraiser/team-delaney/92222

DAY 17 Post Op

Delaney has been admitted to the hospital for 3 weeks straight as of today. With her mommy and daddy right by her side every step of the way. Last night was a rough night. Delaney was up every hour on the hour. The steroids she is on makes her very hungry so she had cereal at 2am and Mac n' cheese at 5am. She did not want to get out of bed for PT all day. Delaney has decided that she no longer wants to wear a diaper, so she has been commando all day. ;-) she has increased her chocolate milk intake to about 56 oz. The neurosurgeon took the dressing off of her incision. Her incision is about 6" long at the back of her head. He says she is still making great progress. He will assess her incision and see if he can take her stitches out while she is under anesthesia on Tuesday. PT came in again and worked with her neck control. We will get there soon. She is very particular about who can do what. For example; mommy is the only one who can scoot her up in bed and daddy is the only one who can hold her chocolate milk for her. She is learning what things she has control over (I.e. wearing diapers, getting her temp taken, wearing her BP cuff). Delaney's 1 year old brother Merlin came for a visit today, with Grandma and Grandpa. She really lights up when she sees him. They laid in her crib and watched Monsters Inc. she was very happy to have her brother here! She has eye and ear exams tomorrow, for baselines prior to chemo. All in all today was good. Hopefully tomorrow will be another good day and Delaney will make more progress! GO TEAM DELANEY!!

Furthermore we would not only like thank everyone for the prayers, thoughts, love, and support, but the huge network of professional care Delaney has received. This being her team of Pediatric Neurosurgery, PICU Physicians, and PICU nurses. We thank you all who have had a hand in the care of Delaney. All of us together truly makes us, TEAM DELANEY!!

Quote of the day: "hardships often prepare ordinary people for an extraordinary life"




Saturday, September 28, 2013

Day 16 Post Op Update

Today was another good day. PT came in and showed us more exercises. Delaney is getting better control of her neck, but still can't hold her head up. She is far from being able to walk, but we hold her up and she will do the motions. She keeps taking about going to Disneyland, so once she's all better we will be making a trip! She didn't have quite as much chocolate milk today, but still drank her fair share! We are anxious about next week. She gets the broviak in on Tuesday and could potentially start chemo that day. It all depends on if the doctors want to remove her stitches or not. Delaney has so many people who love and care about her. She is getting better because you are all supporting her. We thank you for that!

GO TEAM DELANEY!

Quote of the day "When life gives you a hundred reasons to cry, show life that you have a thousand reasons to smile"

Team Delaney - Home Page now on Facebook

Team Delaney Home Page is now live.

Please view link or find TEAM DELANEY - Home Page on Facebook

https://www.facebook.com/pages/Team-Delaney-Home-Page/219289764902599

Friday, September 27, 2013

Day 15 Post Op

Today was a great day! Delaney is talking again! Full sentences. We are having a little trouble making out a few words. We can see her personality slowly coming back. PT came in today and had us do more exercises for neck muscle control. She is getting stronger each day. Occupational therapy cleared her for a regular diet, she just has to be watched because she likes to take Big bites. She probably drank about 40 oz of chocolate milk today, no joke. We met with oncology again. UCSF pathologist agreed she does have a medulloblastoma. Her treatment will begin as soon as her stitches come out (probably next Tuesday). Some of the topics at today's meeting were very hard to hear. A therapy dog named Sancho came in to visit today. He put a smile on Delaney's face. She was able to have chicken nuggets for dinner, which she loved! She was in such a great mood after dinner. She was singing and playing. It really was a great day. We will see how the weekend goes. We are just praying for more great days! Thank you again for your love and support!

GO TEAM DELANEY!

Quote of the day: "a positive attitude brings strength, energy, motivation and initiative."

Thursday, September 26, 2013

Day 14 Post Op

Today was a great day! Delaney is slowly speaking more and more. "Nummy-num" and "mommy hold me up" "me no want to" "no,no, no" are her favorite sayings. She is eating great! She only wants mommy to take off her BP cuff. Mommy isn't complaining! The rehab pediatrician came to visit today and says Delaney is doing great. They will assess her soon to determine her rehab treatment plan. We met with the oncology team again today to discuss in detail some of the side effects of chemotherapy. There are many, most are scary, but Delaney needs this to get better and be cured. Most likely she will get her Broxiac installed next Tuesday and begin chemo either on that day or shortly after. We were hoping to come home before she started, but it looks like we will not be. After her first round of chemo we will be transferred to Children's Hospital Oakland for rehab. Then back to Kaiser Oakland for each round of chemo and UCSF for stem cell harvesting. This is going to be a challenge, but Delaney is strong and will make it through. Especially knowing she has so much love and support from all of you!

But all in all today was a great day!! We look forward to more great days, and even the not so great days :-) Thank you all for your support! GO TEAM DELANEY!!

Quote of the day:
"Your struggles were never meant to break you down, but to make your stronger"

TEAM DELANEY Shirts Ordered Today : 343

TEAM DELANEY,

We have been overwhelmed with the amount of shirt orders....In a good way!   We placed and order today for 343 shirts since our initial order of 29.  I am shocked that so many were ordered, but also not because there has been so much support from family, friends, LPFD, CPP, and SJPD, since this challenging event started just a few short weeks ago for Delaney.  You all have truly warmed our hearts with the prayers and thoughts of support.

The shirts are scheduled to arrive Oct 14th.    I will communicate when they arrive and let you know when you can pick up in Livermore, Sac, and the shipment ones as well.

After you receive your shirt I encourage you to wear it and post pictures on FB or email me and I can post on blog so everyone can see the love and support.

Thanks Again -Uncle Travis

Score Update:  TEAM DELANEY:  372   -   Cancer:  0

Wednesday, September 25, 2013

Daily Post Op Update!!!

So today was another good day. The syndrome was at its best (Delaney was very, very irritable today) 1 day at a time. The Arterial line was removed today, so she has another free limb. She had an EKG today for a baseline pre-chemo. We were able to hold her all day, which she liked. She is eating non stop. Her favorites are chocolate pudding and yogurt. She blew another IV, so the nurses will be coming back this evening to give her a new one (this would be her 6th). She also had her first physical therapy appointment. She can't hold her head up yet, but the PT says she is doing great. She is not able to stand/walk. We may have to go to children's Oakland for rehab, but that will be determined later. We are just enjoying every second we can. It doesn't sound like we will be going home until after the first round of chemo. Living in a hospital is not ideal, but Kaiser Oakland nurses and doctors have been amazing. We may be moving out of the pediatric intensive care unit in a few days. They will transfer us to the Pediatric ward. Tomorrow Delaney has a test for her kidneys, also for a baseline pre-chemo.

We appreciate all of the love, prayers and support from everyone. Everyday we post a motivational quote above D's bed.

Quote of the day:
"You can't direct the wind, but you can adjust your sails"

Thursday 5pm! Team Delaney Shirts Order Closes

Team Delaney, Please make sure you place your TEAM DELANEY Shirt orders by tomorrow 5pm. We have had over 80 shirts ordered to show support this go around. Details are below. Not sure when next order will be placed so please place today.If you guys want to share with family or friends here are the details. This is not a fundraiser or for profit.

 For anyone who is interested, below are the details on purchasing “Team Delaney” shirts to show support for the sweet little girl we all love. Please feel free to send the information to anyone not on Facebook. The shirts are $10 each and available in the following sizes: Youth M-L and Adult S-3XL. The shirts are 100% cotton and run a little on the small side. We will place the order this Thursday (9/26) so all orders must be submitted by 5 pm that day. Shirts can be picked up at Aunt Jackie’s house in the Livermore area and at our house in the Sacramento area. If you cannot pick them up in either location, please include an additional $10 in your order and we will ship all the shirts you order anywhere in the country. To purchase, please do the following:

1. Submit the total amount for your shirts (and shipping if necessary) via Paypal to travisbnewton@yahoo.com
 2. Include your name, the number of shirts you want in each size and your address if you need the shirts shipped in the comments for the payment.
3. If for some reason you cannot include a comment, please email Travis or private message me with your order information and your Paypal user name so we can match your order to your payment. Once we place the order, we anticipate receiving the shirts by October 15. When they arrive I will post an update on Facebook and provide more information on pickup locations. Thank you all for your love and support for our family. Go Team Delaney!!!

Tuesday, September 24, 2013

Day 12 Post Op

So today was a great day! Ct scan was at 5:30am. Neuro team came in at 9 and Delaney was kicking the Doctors like a champion. They decided to pull the EVD which is the stint in her brain. She had the EVD removed at 10am. Occupational therapist came in at 10:30AM and cleared Delaney for soft foods and liquids. We were finally able to hold Delaney for the first time in 13 days. She fell asleep in our arms :) She ate all day long! (Mac n cheese, 2 yogurts (Travis Says it better be Dannon or he's bringing a full supply tomorrow per Dannon Copr requet), 2 puddings, graham crackers, Cheerios, chocolate milk, regular milk, and water). She was very comfortable. Her neck is very weak and she still has several lines hooked up to her. Her sodium levels are fluctuating, so she continues to get salt in her feeding tube. Dr says if she continues to eat well she can stop being fed via the food tube. She will still keep the tube for meds and things like that. We also had a meeting today to discuss "the plan". Delaney has a long road ahead of her but she is storng and will make it through. LOVE TEAM DELANEY
Team Delaney, In order to streamline communication that Janice and Merlin would like to share this blog will be going live immediately. Merlin and Janice have been extremely greateful of everyones support and prayers they have recieved during this challenge. In order to help them get communication to the hundreds/thousands of loving people we have decided to create this communication. Goal is to limit the amount of calls and text they recieve by allowing people to get live updates here as well as post information.