Thursday, May 29, 2014

Delaney's audiology appointment results....

Delaney's audiology appointment lasted about 1 hour with various test performed in each ear. As stated before the specific types of chemotherapy drugs and where the radiation was delivered can effect Delaney's hearing directly. After the tests were performed we were told Delaney's hearing remains normal with no damage to her hearing. Amazing, as the audiologist told us. A huge relief for Delaney, Mommy and Daddy. We were swiftly reminded that there are no guarantees and just because there is no hearing loss currently does not mean that it cannot happen later. However, it is a good sign and indication that there is no hearing loss and remain optimistic. Her hearing will be followed closely every 6 months for years to come. Delaney will have another physical therapy assessment by another separate clinic to continue her intense physical therapy tomorrow, followed by yet another feeding tube change. Delaney is keeping it fierce, as she does so well. All the while loving and playing with her younger brothers. Thank you for all the prayers, love and support. As always..... GO TEAM DELANEY!!

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

Wednesday, May 28, 2014

Delaney's big week of appointments and test.....

Delaney continues to write her story, with smiles, laughter, hugs and kisses, but those emotions come hand in hand with the everyday struggles accompanied with frustration, tears, and sadness. However, Delaney fiercely, keeps moving forward. The hospital trips are less frequent but the treatment and care for Delaney at home is still very delicate. The remainder of this week and through mid-week next week Delaney will have close out tests on her vital organs and body functions to see what, if any damage has been done from the chemotherapy and radiation. Last Friday Delaney had an appointment for IVIG to help rebuild and support her immune system. Today Delaney had a GFR, to test the function of her kidneys and see how well they are filtering her blood. For this test Delaney had to lay completely still for 30 minutes while she had constant x-ray images taken of her kidneys. Tomorrow she will have a audiology exam for her hearing, and the hearing is directly effected by the chemotherapy and radiation she has received. Next week Monday, is another big day it will be Delaney's first MRI after the end of treatment. Delaney will have an MRI of her full brain and spine (which she must be sedated for 2 hours). Next week she will be back at UCSF for a blood test to see if she has any T cells and how well they are working to fight off infection. Delaney is standing, walking, and playing on her own without assistance for a few minutes at a time. She is doing outstanding physically, but still has a lack of balance and coordination. She is still very vulnerable to fall and hurt herself without notice. But she is enjoying her freedom. However, Delaney still is not showing any interest in foods or any other liquid than water. Her food aversion is very serious, and can take any where form 6 months to a year to relearn that food is good and ok to eat. She is currently working with OT for her food therapy. Delaney's new fun thing to do is play play dough with grandma. For hours at a time. Delaney also enjoys going in walks around the neighborhood with her brothers, mommy, daddy, grandma, and grandpa. The days are extremely exhausting, sad, and frustrating, but we have much to be thankful for and much to look forward too. It has and continues to be a TEAM effort from all to help fierce Delaney. Though the woods are thinning, she is still not out of the wood just yet. Thank you for all the prayers, love and support. As always... GO TEAM DELANEY!!

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

Friday, May 16, 2014

Two Weeks Post Treatment

It has been two weeks since Delaney completed her treatment. She is doing well and getting stronger everyday. She loves spending time with both of her younger brothers and becoming a child once again. She still has many, many hurdles ahead in her story, but she will meet them with the same fierceness, which we have all witnessed. Delaney has been given the ok to start her intense physical therapy, and she met with her physical therapist on Tuesday and her physical therapist is pleased with her progress and Delaney is working on building up her leg strength, balance, and corrdination. Delaney's reflexes remain absent but will recover over time. Following physical therapy Delaney had her eye appointment. The eye doctor said her vision is almost equal out if each eye and if she were not patching her eye on a daily basis all this time Delaney would have lost vision out if her left eye. So the patching will continue until she can have the surgery on her eye to correct her eye muscle, which will probably be in September. Delaney had a blood draw on Monday and her blood counts continue to stabilize, but her white blood cells keep her just about being neutropenic. Delaney has finally tested negative for C Diff, she has had C Diff since November of last year. Delaney still is not eating due to the location of the tumor, chemotherapy, radiation, and vomiting everyday for the past 7 months. She now has a food aversion and will begin therapy also on how to eat again. There is a picture of Delaney's scar to remove the tumor it measures about 6" long, and there is a dis colored patch due to radiation (which looks much better after 2 weeks of healing. Under the incision there is a piece of Delaney's skull that is missing and will not be put back. Almost a 3" diameter circle. She has had the lining of a cows heart placed over her brain, then her muscle and tissue sewed back together to close up the site. She cannot play any contact sports for the rest of her life. Not to mention Mommy and Daddy as well as Delaney must be cognoscente of the soft spot on her head throughout daily life and activities. In the big picture It is a small price to pay. But hey scars are cool, they tell us a story, remind us that the past was real, and show us how fierce one can be. Thank you for all the prayers, love and support. As always.... GO TEAM DELANEY!!

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

Wednesday, May 14, 2014

Team,

It's been a busy week for the family as they balance Delaney's hourly needs of care, medication, and food, as she continues to smile. The third addition of brother Valen and Mini Merlin running around the house keeps the family busy and at times it is overwhelming. We will be working on getting a full update tomorrow on Delaney's progress but in the meantime we wanted to share a few pictures.

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

Thursday, May 8, 2014

Delaney's Update...

It has been one week since Delaney's last treatment and Delaney is busy writing a new and happy chapter on her recovery. Delaney was able to stop taking 2 more medications now that radiation is done. That marks the least amount of medications she has been in in 8 months. She is still currently on 4 different medications. This past week Delaney has been enjoying time with her brothers and family. Delaney is starting to understand that treatment is done. She asks Mommy and Daddy at night and in the morning "don't have to go to doctors?", we are happy to say, and tears in our eyes, (sad that she has to ask), "no, no doctors today". Delaney's walking is improving greatly each day, her eating and liquid intake remain about the same. Delaney is still not eating, close to 7 months now, we must push formula through her feeding tube every 2 hours. At the end of radiation Mommy and Daddy were asked if we wanted to take Delaney's mask she had to wear during radiation treatments. It looks like a mid evil device, not exactly what Mommy and Daddy cared to see or bring home. But it is part of Delaney's story, and something she may want to know about as she gets older. It is a hard plastic mask that screws down on the table to keep her head completely still during sedation. The mask was so tight she could not even wear her earrings. But there is good reason for the mask and that is that with a CT scan before each radiation treatment it was overlaid on her most recent MRI scan to make sure only the areas that needed to be radiated were radiated and nothing else. Although her treatments are finished, the same unrelenting pace at home remains the same, as do the stress and anxiety of up coming tests, MRI, and lumbar puncture. Delaney wakes up each day taking on many, many challenges and working at them as fiercely as she has when going through treatment. Know that Delaney is doing good. Thank you for all the continued prayers, love and support. As always.... GO TEAM DELANEY!!

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

Sunday, May 4, 2014

Team,

Wanted to share some more pictures from yesterday of Delaney's last day of treatment. Coming up there are many tests scheduled this month and the next. Therapy will be scheduled for years to come, though we are beyond thrilled that her treatment has officially been completed. Delaney has been resting a lot today and we are all enjoying our time at home and the finish of daily trips to Oakland. Delaney's radiation oncology team helped show support on her final day, right along side the thousands of you have done it for Delaney day in and day out. Many things played a part in Delaney's over all positive progression and successful treatment. It was cumulative from doctors, nurses, family, friends, warm hearted strangers, communities local and abroad, businesses, public safety departments, city departments, and individuals doing what they wanted to do with what had to offer from prayers to fundraisers. Grandpa was at the hospital 34 days straight in the waiting room 12 hours a day willing to help in any way. Grandma has been living at Mommy and Daddy's house to help with Delaney's care. But one thing is certain and that is during treatment Delaney's little brother Merlin III was her biggest cheerleader, #1 fan and best therapy, and continues to be. Merlin III is what kept Delaney motivated and pushing forward to recover. After her operation Merlin was there to sit with her when she could not move, Merlin was there to crawl by her side when she could begin to crawl again (knowing he could walk himself), he stood next to her while she was being held up, he eats with Delaney when she is afraid to eat or will not try to eat, he too has sacrificed much of his childhood to help his big sister. We hope and are optimistic that Delaney's days will continue to improve and she will resume her childhood which has been taken away from her the past 8 months. We will never understand "why", but we understood our role as parents, and care providers and that is to give Delaney everything she needs to fight fierce. Thank you for all the prayers, love and support. As always ..... GO TEAM DELANEY!!!

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