Monday, June 30, 2014

Delaney Fights On....

After a little over 2 days Delaney has visibly put some weight back on and has much more energy. She still does not have an interest in food or liquids other than water. Some of you may have caught a glimpse of Delaney out and about around town. This is because we have some good news to share. Mommy and Daddy received a phone call from UCSF sharing the results from the blood work that was sent to the Mayo Clinic. Delaney's T-cell count is lower than they would like at this time, however her T-cell function is normal, removing her from home isolation, because she can better fight off infections, but she still cannot be around sick people or individuals who have not been vaccinated. This is 3-4 months ahead of schedule. On the other hand it has been very difficult for Delaney adjusting to large crowds and simply just leaving the house, this is because when we leave she thinks we are going to the doctors and this scares her. Not to mention the fear and paranoia that Mommy and Daddy have over Delaney possibly getting sick. Yet another slow adjustment process but we will work at it. After a long and rough week Delaney was able to get much needed rest. She is in better spirits, active, and just happy. Thank you for all the prayers, love, and support. As always ........ GO TEAM DELANEY!!

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

Saturday, June 28, 2014

Delaneys Update

Delaney has worked tirelessly for the past 4 days trying to eat, but unfortunately Delaney had to have another feeding tube placed this afternoon. There were a couple key factors in the decision to place another tube mainly weight loss and hydration. Delaney weighs 31 lbs and she can only expierecnce a weight loss of 10% or less, which is roughly 3 pounds. The first 3 days she lost 1 pound and by the afternoon today she was close to 2 pounds lost. Her margin of weight loss is small. Secondly, by the afternoon today Delaney's intake of water or any liquid stopped. By 5 pm she had only drank 13oz of liquid. And hydration starts to become a real concern, which could lead to hospitalization. Also her activity level dropped dramatically and she began napping more frequently. Therefore, the tube was placed once again. And thanks to Delaney's OT therapist who monitored her so closely each day and Delaney's home health nurse who has been on stand by each and everyday the tube has been out to come by and place the tube back in, at a moments notice. Delaney, Mommy, and Daddy are not discouraged, for we know the process will be long, but, we will regroup, rehydrate, refuel and fiercely persist the joys of eating once again. On another note, Mommy and Daddy enjoyed so much, simply just to hold, kiss, and nuzzle Delaney's soft cheeks once again, without the interference of her feeding tube. Thank you for all the prayers love and support. As always....... GO TEAM DELANEY!!!

Thursday, June 26, 2014

Delaney's Update...

Delaney's feeding tube was pulled on Sunday night. It is very difficult for Delaney, remember she has not eaten food for 9 months, and not by choice. Not to mention all of the changes her body had to endure with chemotherapy. For example killing or altering her taste buds, which still may or may not be functioning correctly. Delaney has begun to drink milk as her primary source of caloric intake, taking sips of Gatorade, and drinking water. We have been calorie counting, measuring each and every drop of liquid, tracking the number of wet diapers she has and providing any and every food or liquid option available. Mommy and Daddy are doing there best but it is impossible to keep the stress, anxiety and emotions at bay, as it is difficult to watch a vital function, such as eating, become so challenging, and instill so much fear and anxiety. But Delaney is no quitter, she holds her head up high and works fiercely to overcome her challenges. Delaney has lost 15oz. In weight over 3 days we can expect a drop in weight at the same time we hope for an increase in food intake. It is still day by day, and the feeding tube could go back in at any time. Thank you for all the prayers, love, and support. as always ..... GO TEAM DRLANEY!!

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

Friday, June 20, 2014

Delaney's Fierce Friday Update...

Delaney continues to write her story each and everyday, working Fiercely on her daily challenges and struggles, because when a child fights cancer or the effects of it, they don't get days off. Delaney will be tested once again this Sunday. Mommy and Daddy will pull Delaney's feeding tube in an attempt to get Delaney eating again. She has been on a feeding tube for 9 months now. We hope that the drive to eat will suppress or overpower the anxiety and fear of vomiting from eating food. We will pull her feeding tube after 6pm on Sunday and depending on how she does it may stay out from 1-3 days or longer. If we don't try we won't know. Mommy and Daddy have work hard to build up Delaney's bolus feeds each push to stretch her stomach so when she does not get formula she will feel the hunger also we have built up a reserve in body weight to let her go 1-3 days with limited food, if needed. Delaney will be monitored very closely, by calorie counting, and monitoring hydration. It will be very stressful, difficult, and hard for Delaney and it will be hard on Mommy and Daddy also. We will do our best to keep updates on her progress, as we do not know what to expect. Thank you for all the prayers, love, and support. As always.... GO TEAM DELANEY!!!

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

Monday, June 9, 2014

Cancer Free....

Delaney wanted to share some exciting news. Last Tuesday on 6/3/14, one day after her MRI, at her follow up appointment and seeing the results of the MRI we received wonderful news. Delaney, Mommy, and Daddy were told that Delaney was cancer free! Although we must remember she has a very long road ahead of her, that page in Delaney's story we will put a bookmark. Thank you for all the prayers, love, and support! As always ... GO TEAM DELANEY!!!

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

Saturday, June 7, 2014

Delaney's progress and appointment results this week....

Delaney had two bigs days with follow up appointments after her MRI scan. On Tuesday Delaney had an appointment with her neuro-oncologist and neuro team, that consists of 10 doctors. The appointment went very well. Mommy and daddy were able to view all of the MRI scans from the tumor, to the resection, and all follow up scans. The scans were viewed side by side and we could see the results. Delaney has come along way. Delaney's neuro-oncologist said that Delaney is officially done receiving treatment. A slight bit of closure for us all, however Delaney has a long road ahead of her still. Delaney will have follow up MRI scans every 3 months for a year, then very 4 months for a year then, then every 6 months for a year and then finally once each year. Her blood counts continue to rise only a few counts have reached that of a normal healthy child. The doctors did say for the extremely aggressive and big big doses of chemotherapy (doses bigger than they give grown adults) Delaney flew through treatment. Delaney will have her last lumbar puncture to test her spinal fluid. During this procedure Delaney will have her Broviac removed. The central line that goes directly to her heart. This will hopefully be in the next 2 weeks, another huge step to recovery and removing an infection risk.

Then on Wednesday Delaney had her 3 month follow up appointment with her bone marrow transplant team and UCSF. There Delaney had 6 vials of blood drawn to send off to the Mayo Clinic to test her T-cells to see how they are functioning and what, if any infections she can fight off. They also said Delaney must remain on isolation until results are received from the blood work. It has been a busy two weeks, with an appointment each day, and we can see it is beginning to wear on Delaney, as well as the rest of us. Delaney continues with food therapy twice a week and physical therapy at least once per week. Delaney is doing well, she is happy, working on becoming more independent, and enjoying life. Thank you for all the prayers, love, and support. As always... GO TEAM DELANEY!!!

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

Tuesday, June 3, 2014


Delaney had her first full brain and spine MRI since the completion of her treatment protocol. Delaney was sedated for over 2 hours to complete the MRI. The mountain of unexplainable emotions weighed heavy on Mommy and Daddy today. As Mommy and Daddy received the call, every last emotion, feeling, and thought left us, making us feel empty inside. It was quickly filled with overwhelming joy, relief, and happy tears. We have so much to be thankful for in a horrible situation.

Delaney food aversion is very real and is currently starting a 24 week food course to begin eating again. She is only confident enough to eat water out of a bowl with a spoon. She must start with the basics, a simple movement, spoon to mouth. It is a start, but Delaney will fiercely keep moving forward.

We cannot thank everyone wrapping Delaney in their, prayers, hearts, and thoughts. Thank you for all the prayers, support and love. As always... GO TEAM DELANEY!!!

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