Tuesday, February 24, 2015

Keeping busy with some good news and fun times......

After a busy last week, Delaney is enjoying herself and time with the family. Delaney had an eye appointment and an echocardiogram for her heat. As for her eye appointment, it went very well. Delaney has been able to maintain full and equal vision in both eyes. A huge relief and much to be thankful for. There is now serious talk and communication between Delaney's neurosurgery team and neuro oncologist of a possible eye operation this May to straighten and correct her eye. Due to the inward eye drift or strabismus, she constantly sees double vision. Furthermore she continues to fight off styes, in both eyes, and is now on oral medication 2x per day and topical medication 3x per day. This is in hopes to clear up the styes within 5 weeks so she can proceed with the eye operation. If the styes are present, there cannot be an operation. Now on to the echocardiogram. This is the fourth echocardiogram Delaney has had, but the first one with out her Broviac or central line in place. Before it was recently removed it was hard to get a full, clear, unobstructed view of the function of her heart. With all of the chemotherapy she had received via the Broviac, it was delivered directly to her heart and dispersed throughout her body. After 1 year post treatment of chemotherapy Mommy and Daddy received a call from the Pediatric Cardiologist who read the results of her echocardiogram. It was wonderful news, news that her heart is functioning normal, with no side effects. Again we could not be more thankful and blessed. Lastly Delaney's full brain and spine MRI is set for March 10th, at 8am. But as that day full of stress and anxiety closes in, Delaney is filling her days with smiles, silly antics around the house, small outings, and having fun modeling her new clothes, shoes, and socks. Helping Mommy and Daddy hide the ugly ball of emotions that at times overwhelm them. We thank each one of you who have, and continue to support Delaney in her story and in her road to full recovery. Thank you. Thank you for all the prayers, love, and support. As always....... GO TEAM DELANEY!!!!

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

Thursday, February 19, 2015

1 year ago today and how she has come so far.....

As we head to Delaney's appointments this week, today will be exactly 1 year ago, Delaney received her third and last autologous bone marrow transplant. That was the completion of her 6 rounds of aggressive chemotherapy. Upon completion Delaney was able to ring a bell three times loud, sounding the completion of her chemotherapy and the closing of another chapter. Above is a picture from one year ago and one from today. We are blessed to be where we are today. On this day, Delaney, for the third time, received her own stem cells back that were taken from her by a apheresis machine, and preserved. After each round of aggressive chemotherapy at UCSF. The bone marrow transplant took place, using those very stem cells to give back to Delaney, to "rescue" herself, earning another birthday. The chemotherapy she received was too much for Delaney's little body to recover from. And yet again Mommy and Daddy continued with the tradition of a bone marrow transplant, singing happy birthday to Delaney, but this time with a small, small, sense of relief that mommy and daddy will not have to witness Delaney go through the pain, sickness, and destruction of chemotherapy. As many of you know Delaney is still immunosuppressed, a year later from the chemotherapy she received. Little Miss Fierce is very happy and playful with her brothers and is getting stronger. We are thankful beyond words. Thank you for all the prayers, love, and support. As always...... GO TEAM DELANEY!!!

Happy Birthday Delaney, we love you.

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

Thursday, February 12, 2015

Pressing On....

Things have been progressing well for Delaney, but that does not go without saying she stills has many challenges and new things to manage. Delaney was finally able to shake the cold she had. We are thankful it was just a cold and did not turn into anything worse, our fear being that she is still immunosuppressed. Delaney had her first dentist appointment after the completion of her treatment, and we did not know what to expect. Delaney did well at her appointment, however as a result of the aggressive chemotherapy and radiation treatment, at a the age of 3 1/2 Delaney has the start of 3 to 4 cavities. For a period of 6 months Delaney was not able to brush her teeth because she was neutropenic, and had to use toothettes. A sponge like toothbrush that would not cause cuts or abrasions, as a toothbrush would, exposing her to bacteria. This was something we were aware of, and now must manage. However, we put it in perspective, they are just cavities, just another thing to watch. Her dentist appointments will be every 3 months, to track and monitor the cavities in the hopes they do not get worse. Next week will be a busy one for Delaney. She will have a follow up appointment with her eye doctor for her esotropia. Her eye muscles were damaged from the tumor, causing the eye to drift inward and a surgery or surgeries will be needed to correct her eye. That could possibly this year. She will also have an echocardiogram to check on all functions of her heart, again because of the chemotherapy she received. Delaney has been receiving physical therapy once a week and will now begin occupational therapy, to name a few, she will to begin work on her fine motor skills, dressing herself, buttoning clothes, and working out small tremors in her hands, which may be due to the double vision she sees because of her esotropia. Delaney will also have another MRI of her full brain and spine in the beginning of March, we are still waiting on a date. The stress and anxiety are slowly mounting. But more importantly, all in all, things are still progressing in a positive direction. Which we are truly blessed for. Honestly. Delaney fills the rest of her days with laughter, love, and smiles. Playing with her brothers, family, and crafting. Delaney loves being an older sister watching out for and caring for her little 9 month old brother Valen. She also made it out to a Monster Truck Jam. And she sure did love it! Thank you for all the prayers, love, and support. As always....... GO TEAM DELANEY!!!!!!

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

Thursday, January 22, 2015

Another milestone reached.....

Exactly 1 year ago today, Delaney received her second autologous bone marrow transplant. Above is a picture from a year ago and one from today. The pictures speak for themselves and we are blessed to where we are today from a year ago. On this day, Delaney, for the second time, received her own stem cells back that were taken from her by a apheresis machine, and preserved. After each round of aggressive chemotherapy at UCSF, the bone marrow transplant would take place, using those very stem cells to give back to Delaney, to "rescue" herself, and earning another birthday. The chemotherapy she received was too much for Delaney's little body to recover from. Yet again Mommy and Daddy continued with the tradition of a bone marrow transplant, singing happy birthday to Delaney with tears in their eyes while she lay sleeping in her hospital bed. As many of you know Delaney is still immunosuppressed, that being said Delaney has been fiercely fighting off a cold for about a week now. She is trying to shake it off, but being immunosuppressed makes it just that much more difficult. She is very happy and playful with her brothers and is getting better slowly. We are thankful beyond words. Thank you for all the prayers, love, and support. As always...... GO TEAM DELANEY!!!

Happy Birthday Delaney, we love you.

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

Wednesday, January 14, 2015

Disney Dollars for Delaney..

Delaney is starting off the new year happy, healthier and strong. Delaney continues to smile big and bright, all the while, doing the best she can to make up for lost time in her childhood and overcome her daily challenges. Early last year, Granada High School started "Disney Dollars for Delaney". A collection of funds to help send Delaney to Disneyland. This fund was started by the students, faculty, staff, and community because one of the first things Delaney was able to verbalize, 2 weeks after her brain operation (because the operation took away her ability to talk) was that she wanted to go to Disneyland. That being said, because of the big hearts and efforts of the students, faculty, staff and community of Granada High School, Delaney was able to go to Disneyland last week. Delaney enjoyed every minute she was there! Laughing, smiling, and creating new, powerful, lasting memories with the family. On the happiest place on earth, of course. Thank you, to all who helped make that possible for Delaney and the family. There were many highlights from the trip, but one was very emotional for mommy and daddy. As Mommy and Daddy continue to work very hard with Delaney on every meal, on the way back from Disneyland we stopped at In-N-Out Burger. We knew it would be a long shot to try and get her to eat, but we tried anyway. At first Delaney was adamant that she did not want any food, and then at the last second she asked for a grilled cheese sandwich, and of course we followed up, asking her if she would like a milkshake also. And she said yes. The food came and the real challenge was in front of her. First she tried the milkshake, she smiled big, then followed by a nibble on the grilled cheese, and then another and another. Then back to the milkshake. The smile she had on her face was so beautiful, and she kept repeating "I like this sandwich!", "I like this sandwich!" We savored those moments, simply watching her eat the grilled cheese, burned into our memory forever. When she was done she ate nearly the entire grilled cheese and all but a few sips of her milkshake, by far this was the most food she consumed in one sitting. It was a good time for Delaney and the family to heal, get some "normalcy" back, and enjoy being together. Little Miss Fierce, keeps working hard every minute of everyday. Thank you for all the prayers, love, and support. As always..... GO TEAM DELANEY!!!!

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