Wednesday, April 30, 2014

My Treatment is Complete...Wednesday April 30th, 2014!

And thought I MAY be but LITTLE, I AM FIERCE!

Wednesday...Last Day of Focal Radiation

Video Link


I wanted to share a video of the past 7 Months and 20 Days of Delaney's journey. Tomorrow, Delaney will complete her last day of focal radiation and start the long journey ahead of recovery and therapy. It seems like yesterday when I look back on that Monday September 9th 2013. The family should have been celebrating Mini Merlin's 1st birthday but instead there were tears, frustrations, lack of understanding, and confusion as I could see the look on Janice's and Merlin's faces when we knew something was just not right. As we waited for Delaney's ambulance transfer from Walnut Creek to Oakland more family showed up and little did we know what a hard and tireless journey this was going to be and what Delaney would end up enduring, which no child should ever have to experience. 

As Delaney diagnosis came in on September 10th as a brain tumor, which later was determined to be cancerous the world seemed to stop. We prepared for brain surgery and the treatment ahead. Around this same in this journey we call life, that didn't make sense, TEAM DELANEY was born and a quote posted by Daddy and Mommy above Delaney's bed would become the inspiration for her fight, "And though she be but LITTLE, she is FIERCE!" The blog was created, followed by Team Delaney Facebook page and the support and prayers for our little fighter started grow. Still to today we are still left speechless and humbled by the support that the community close and across the world has given Delaney and her family. I wish I could list everyone that has touched Delaney's life and given the family the ability to be by her side every step of the way but it would be impossible. The support from both parents work, the 9,000 plus FB followers, the over 3900 Team Delaney shirts sold, our infamous FIERCE FRIDAYS, the meals, the donations, blood drives, and the fundraisers that friends organized was nothing we were expecting. We have been blessed by the support during these past 7 moths and 20 days as the Team has stood by Delaney's side for her treatment and have shown to continue to stay by her side as her recovery and therapy start. 

This journey has forever changed our lives and the family lives as we are grateful to have everyone by our side. Someday when Delaney is able to leave the home with the family she will be able to thank many of you with her bright smile and know that you have forever touched her life. We hope and know that in the near future under Team Delaney we too will be able to give back and help other children and their families like ours in the community, that has given us so much.

" And though she be but LITTLE, she is FIERCE!" 
Love Uncle Travis

This list below is what Delaney has endured the past 7 months and 20 days. She has gone through more these past months then most of us will ever in our entire lives but she continues to fight on like she has done everyday! 

September 9th missed little Merlin's 1st birthday (Delaney was admitted to hospital)
September 10th Diagnosed with brain tumor
September 12 brain operation to remove tumor
64 total admitted overnight stays at the hospital (22 days of that was in the Pediatric Intensive Care Unit) 
6 1/2 months of at least 1 vomit a day
2 operations (1 for brain tumor resection, 1 central line placement)
21 days of Chemotherapy
28 days of brain radiation
1 stem cell harvesting, a 5 hour harvest
3 stem cell bone marrow transplants
35 sedations ( 2 for operations, 4 for MRI, 1 EVD removal,1 stitches removal, 2 lumbar puncture, 28 for radiation)
1 Biopsy of tumor
4 MRI scans
31 CT scans
1 EVD placement for CSF drainage
16 X-rays chest/abdominal 
1 complete blood transfusion (during brain operation)
18 Platelet transfusions
14 Blood transfusions 
51 at home Blood draws
2 lumbar punctures
6 IV placements (4 at one time)
1 arterial line placement
1 foley catheter 
4 EKGs
4 echocardiogram
4 renograms for kidney function
15 NG tube (feeding tube) placements
2 surgical dressing changes
1 wheelchair for mobility challenges
4 transports by ambulance

"And though she be but LITTLE, she is FIERCE!"

Tuesday, April 29, 2014

Two Days To Go.

Delaney is beginning the countdown to the end of her treatment, one fierce day at a time. Delaney is doing well and handling her treatment smoothly. As her treatment comes to a close, nothing gets easier. Every test, procedure, and recovery brings a tangled ball of emotions. Delaney had an appointment with her pediatric neuro oncologist. There were many things discussed at length and detail. Overall Delaney has done an amazing job going through her treatment protocol. Her final radiation treatment will be on Wednesday, for a total of 28 days of radiation. As a result Delaney will have swelling on her brain for the next 6 weeks and once the swelling has gone down she will have another MRI. But the month following her radiation treatment Delaney will again have a list of tests performed to see if there are any side effects from the chemotherapy, and radiation. The tests include a renogram for kidney function, echocardiogram for cardiac output, blood work for her liver function, hearing test, vision test and a lumbar puncture to test her spinal fluid. Although her treatment is coming to a close Delaney will have many years of physical therapy and tests performed. Thank you for all the prayers, love and support! As always.... GO TEAM DELANEY!!

"And though she be but LITTLE, she is FIERCE!"

Saturday, April 26, 2014

25 paper chains down, 3 to go.....

Delaney continues the countdown to her last 3 days of focal radiation, and completion on this Wednesday April 30th. Only 3 treatment days left and the closing of yet another chapter and the opening of her recovery and therapy for years to come. Delaney continues to beat all the odds and impress every doctor and nurse she meets, but as FIERCE as she is, we wouldn't expect anything else from our FIERCE FIGHTER. The family remains extremely busy with the addition to the family and trying to keep up with the daily medication and treatment for Delaney. We will post daily updates and countdown of Delaneys treatment starting Monday as she ends her focal radiation and starts the recovery she has been waiting for and deserves.

Thank you for all the prayers, love and support. As always.... GO TEAM DELANEY!!!

"And though she be but LITTLE, she is FIERCE!"

Tuesday, April 22, 2014

21 paper chains down 7 to go.....

Delaney remains as fierce as ever going through her treatment with such beautiful innocence, grace, and a infectious loving smile. Just this past Saturday morning on April 19th Delaney, and her brother Merlin III welcomed baby brother, as Mommy gave birth to a baby boy, Valen Lee Newton at 7:59 am. He came in at 7lbs 9oz 20 inches. Mommy and baby are doing well and at home now. Delaney and Merlin III could not be more proud, happy, and loving to their younger brother. With the newest Team Delaney member. As if things things could not become more complex, stressful, and extremely busy, Mommy and Daddy are at capacity. Call it what you may, coincidence, representation; but in a season that brings new life, warm sunny days, bright colors, and rebirth. It is only proper that Delaney end her treatment at such a beautiful time of year for a fresh start. Although Delaney will have many years of physical therapy, tests, and daily challenges, this is it, the home stretch, 7 days left and the big countdown next week with her last thee radiation treatments. Thank you for all the prayers, love and support. As always.... GO TEAM DELANEY!!!

"And though she be but LITTLE, she is FIERCE!"

Thursday, April 17, 2014

17 paper chains down 11 to go!

It has been longer than usual since Mommy and Daddy have had time to write a post, but all this time Delaney has been very busy writing her story. As Delaney's treatment goes into its 7th consecutive month, the slow grind of treatment is wearing on us all. Making us feel numb. However, Delaney's smile and love keeps us going. Delaney has 11 more days of radiation, and we hope and are optimistic that this will be the last of her treatment once and for all. Delaney continues to dig her heels in and fight fiercely. The radiation oncologists are very pleased at how Delaney is handling her radiation treatment. The most immediate side effects from radiation have yet to show, that being nausea, headaches, and burns in the back of her head from the continued day in and day out of radiation. It is quite surprising, but there is still time left. However, one side effect is starting to show and that is Delaney becoming more tired and sleeping longer due to the radiation. Delaney, Mommy and Daddy have gotten into the weekly routine of sedation, radiation and waking up from sedation. Things are still very difficult, emotional, and painful to expierence. As her treatment progresses, Delaney, each day is forging ahead, she is more determined to walk in her own each day. She is taking steps on her own, 17 consecutive ones, the longest to date, she is always being spotted by someone so she does not fall. She is beginning to taste different foods each day, but she still has not had a complete meal on her own since October of last year. Mommy and Daddy continue to push formula through her feeding tube every 2 hours, so she can get the calories and nutrients she needs. Delaney's spirits are very high, she is very happy, active, and loving. Delaney is still waiting on becoming an older sister yet again, Mommy was due yesterday. Delaney was diagnosed when Mommy was 9 weeks pregnant. It is almost time for the final countdown, in the mean time Delaney remains fiercely relentless in her final push to end her treatment and kill all the cancer, done with a smile, anchored by love. Thank you for all the prayers, love and support. As always.... GO TEAM DELANEY!!

"And though she be but LITTLE, she is FIERCE!"

Friday, April 11, 2014

13 paper chains down and 15 to go!!!! Wednesday Morning

13 paper chains down and 15 to go!!!! Delaney and the family have been very busy this week continuing her focal radiation treatment. Delaney is doing great overall but they are long days for her and the family. Delaney continues to gain a little appetite by continuing to eat Danimals, chocolate milk, and apple juice. It's so great to see her starting to ask more and more for little bits of food and drinks. Delaney continues to amaze Mommy and Daddy daily and give us the strength we need. Delaney wakes up with a little upset after focal radiation but by the time we make it home she is full of energy and ready to play with brother and the family. Tomorrow will be Delaney half way point and one step closer to completion of her focal radiation treatment. Thank you for your support, prayers, and love.

"And though she be but LITTLE, she is FIERCE!"

Sunday, April 6, 2014

Two Weeks Down....

As Delaney closed out week 2, she tore apart her 10th paper chain, she has 18 more to go. Delaney has been getting the hang of things, with early mornings starting at 530am, doctor and nurse assessments before her treatment, and one of her tougher challenges waking up from sedation and shaking off the haze from it. Delaney is doing very well, her spirit, energy, and even appetite are on a steady climb up. Delaney is starting to walk unassisted for short distances through out the house, or hold us with one hand. She still needs someone by her side at all times. It is amazing to see her get more independence back. Secondly she is slowly gaining confidence to try new foods each day, and finally drank 2 Apple juice boxes on her own yesterday. Another positive is that Delaney has not gotten nauseous yet from the radiation. As there are still many daily challenges and struggles Delaney has and the family must contend with, Delaney's smile is infectious and attitude is fierce. We have included pictures of the machine that delivers radiation, the doors that it is behind are 1 foot thick, it is an intimidating machine for Delaney, but she now laughs, smiles and dances in our arms as she fiercely goes in for treatment. Thank your for all the prayers, love and support. As always.... GO TEAM DELANEY!!!

"And though she be but LITTLE, she is FIERCE!"

Thursday, April 3, 2014

All about the little things in life.....

As Delaney goes in for her 9th paper chain removal today we wanted to share a little something special. Delaney's eye lashes started to grow back last week and even more noticeable today. 7 months ago, eye lashes were just eye lashes and something we all took for granted. However, in today's life it is something Mommy and Daddy cherish and to see our fighter getting back something what was taken from her brings smilies to our faces during these tireless trips to Oakland. Delaney understands and talk about her eye lashes growing back and how they itch a little bit because she has been so used to not having them. Soon they will be back to full length along with the peach fuzz on her head.

Thank you for all your support, prayers and love.

"And though she be but LITTLE, she is FIERCE!"

Wednesday, April 2, 2014

7 paper chains down, 21 more to go.......

The week started off rough for Delaney. Sunday night, 15 minutes before her formula was to be shut off for the night Delaney vomited, and it was such a large vomit her feeding tube came out through her mouth immediately, and Daddy had to pull the tube out through her nose. Mommy and Grandma were quickly by Delaney's side. It was an anxious night since Delaney is not eating or drinking on her own and she lost most of her nutrients and hydration that night. That morning, Monday, Week 2 of focal radiation began. Since Delaney vomited and lost hydration Mommy and Daddy asked for an IV bolus of fluid while she was sedated to keep her well hydrated until she could have her feeding tube placed again. Delaney's home health nurse was by that morning and placed the Feeding tube back in again. Delaney continues to do very well through radiation treatment, her radio oncologist said that her CAT scans that are taken before each treatment are overlaying perfect with last MRI she had, as this is the mapping for the delivery of the radiation. Delaney is very happy and active at home but does take longer naps. Today Delaney had a follow up appointment with pediatric physical therapy to assess her progress of her motor functions. Since the brain operation Delaney has had to re-learn all of her basic motor functions that we use everyday, without realizing it. The physical therapist said Delaney has improved immensely, one step at a time she is taking back what once was hers. The days and nights are long, slow and grinding, but Delaney surprised Mommy and Daddy today by smiling, pointing and even did a little dance as she showed us to her treatment room where she receives radiation. She is very determined and pushes thorough each treatment, making it look so easy. Thank you for all of the prayers, love and support. As always..... GO TEAM DELANEY!!!

"And though she be but LITTLE, she is FIERCE!"