Friday, July 18, 2014

7 Day Countdown....

The countdown continues. Little Miss Fierce has 7 more days until her Broviac is removed, and what a day it will be. Delaney has a very long and challenging road ahead of her but she continues to make progress, slowly. Delaney is getting back to herself, the way she was before she became sick and her fight began . It brings so much joy to Mommy and Daddy to see Delaney happy and vibrant again, we have missed it so much. Delaney continues not to eat, but her confidence and willingness to try and taste food is getting stronger. Delaney continues to go to, Therapy At Play, where her food therapy sessions take place 1-2 times per week. This weekend mommy and daddy will start to withhold her formula bolus through her feeding tube, to once again, try and jump start her drive to eat. On Tuesday Delaney will head back out to Oakland Kaiser to receive IVIG again, through her Broviac, this is to help her immune system recover, after the bone marrow transplants she has received. Following that she will have one more IVIG in August, to complete her course of IVIG. And yes, many of you have noticed that Delaney's hair is growing back. It is a beautiful site for us all and wonderful to touch. Not to mention Delaney is trying to put bows in her hair once again, at least those bows that will hold to what little strands of hair she has. We remain steadfast in Delaney's recovery helping her fiercely push though each day and the challenges that may come. We remain optimistic, positive, and strive to find that silver lining each and everyday. Thank you for all the prayers, love, and support. As always..... GO TEAM DELANEY!!!

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

10 Months Ago Today....July 12th

On September 12th 2013, Delaney endured a successful 12 hour brain surgery and the fight to kick cancers butt began. Delaney has come so far with her treatment these past 10 long months, she continues to FIGHT, and is 40 days cancer free!

Thank you to everyone that has helped with Delaney and the family during these past 10 months and continue to support as there is still a long road ahead. We could not have done everything we are doing for Delaney without the support from family, friends, doctors, nurses, strangers who are now friends, businesses, organizations, and the surrounding communities. Everyone has touched our hearts and will always have a special place in Delaney's and the family's hearts.

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

Wednesday, July 9, 2014

T-Minus 16 Days...Let the count down begin!!

Delaney's Broviac or central line, an IV port with double lumens, that goes to her directly to her heart, is scheduled to be removed on July 25th. Delaney will be sedated for the removal of the Broviac and a lumbar puncture will be performed at the same time. The Broviac was placed in October of last year, it will have been in for 10 months. The Broviac has allowed Delaney to receive antibiotics, chemotherapy drugs, sedation, IV fluids and much more. It provides instant access (especially when she was neutropenic with fever) without the need for constant and repeated needle sticks. On the other hand it is a big infection risk, the dressing must be changed every 7 days as well as the lumen caps. The dressing changes require it to be a sterile process, sterile gloves, masks worn by Mommy, Daddy and Delaney and all medical supplies are sterile. Delaney needs to completely still for the best results of good clean dressing change. But every single day Delaney's Broviac lines must accessed by Mommy and Daddy to be "locked" with heparin. The heparin prevents blood from entering the Broviac lines and clotting. All said and done Delaney will have had nearly 60 dressing changes (some daily at UCSF because of the chemotherapy) and well over 120 cap changes. It has taken a lot of work tracking, changing, and managing her Broviac and Broviac lines. It will be a big day, but until then mommy and daddy must remain vigilant towards Delaney's Broviac in every way. We are literally counting down the days! 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 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!"