Friday, November 29, 2013

FIERCE FRIDAY

Team,

Lets help show Delaney support this FIERCE FRIDAY as she heads to Oakland today for a blood and platelet transfusion. Keep it FIERCE Delaney!!!!

Thanksgiving

Team, There will be no official update today. The Newton Family would like to wish everyone a Happy Thanksgiving. As we go through this very difficult time, as a family, through the holiday seasons we know we have much to be thankful for. Thank you for keeping our family in your thoughts, prayers, for your love, and generosity. As we are reminded daily by Delaney's struggles, please enjoy the time and moments with your family, friends and loved ones. Hug them more, longer, and tell them you love them. Thank you for all the prayers, love, and support. As always ....... GO TEAM DELANEY!!

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

Thursday, November 28, 2013

Wednesday Update

Delaney slept well last night, we were happy to see her sleep a little longer too. All though she was up just before 5am. Mommy and Daddy slept with one eye open as always. We have gotten into a bit of a routine at home for a change, it is very nice and comforting. Mommy flushed Delaney's Broviac this morning and it worked great. Today Delaney took more frequent naps, she is getting tired quicker because her blood counts are low, but she still has a good source if energy. Today was a low key day, we did our best to keep Delaney hydrated, and fed, she actually had 1 chicken nugget, and some chocolate pudding. Delaney is doing a great job wearing her eye patch for a few hours a day, and she wears her foot braces also while she naps. We are looking forward to a couple of uneventful, fun days at home with the family for Delaney. Delaney was asleep before 7pm, we gave her her nightly injection, she is resting well, her body is working hard to recover. We love her so much, she is our fierce fighter. Thank you for all the prayers, love and support. As always ... GO TEAM DELANEY!!!

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

Wednesday, November 27, 2013

Tuesday Recap

Delaney continues to write down another day to her story, no day is ever the same. Yesterday Delaney was up at 4 am happy and energetic. She made it through the night without vomiting. Yesterday morning Delaney asked for some food to our surprise, it is difficult to get her to eat anything, she more or less tastes things. So Daddy got her some cereal, she sipped the milk and then said she was done. Took her out of her high chair and then she said she wanted some banana, and she actually ate 1/3 of a banana and kept it down, and she actually had a craving for chocolate milk again, she lost her craving for chocolate milk because she had been vomiting so much at the hospital and home while drinking it she no longer wanted it. So it is nice to see her want to have more. After breakfast Delaney played with brother and Mommy and Daddy had to get things ready for another out patient chemotherapy treatment for Delaney in Oakland. The appointment today consisted of going over the plan for the next 2 weeks, for appointments and tests. The way it looks now Delaney will have to get admitted for a blood and platelet transfusion later this week, her last out patient chemotherapy in Oakland next week, and the following week Delaney will have a appointment almost everyday a lumbar puncture and brain/spine MRI both requiring sedation, renogram, and hearing test. Delaney's chemotherapy appointment went ok, she was hungry again, Mommy packed some food, pudding, apple sauce, and juice. All food easy to eat. So Delaney wanted some pudding while waiting for the chemotherapy to finish and did a great job eating. Both of her lumens in her Broviac again, are very sluggish and hard to flush, so we decided to have the lines TPA, to remove any clot. Especially since the holidays are a couple days away and we don't want any issues to have to go to the hospital. Once the nurse put the anti coagulate in the lines they must sit for an hour, during that wait Delaney watched Toy Story, was in good spirits, and vomited all that she had just eaten. Just another very frustrating up and down in the day. We were happy to see her eat, have an appetite, but then have it all come back up is difficult. As a parent it is very difficult, and sad to see Delaney get to a point where vomiting is just another routine part of her day, and see her accept it. But then we remind ourselves that is the fierce that Delaney has, and we love it. She can vomit and does not effect her mood or attitude. Delaney need a full clothes change, the nurse removed the TPA, and it was time to head home. Once home, it was back to catching Delaney up on fluids and feeds through her feeding tube. Tonight we double her GCSF doses for her injection into her thigh, to help ramp up production of her white blood cells. It is a lot to inject without her moving. Delaney looks and is doing great, her attitude is inspiring, her motivation to walk and crawl is motivating and her love drives us. Thank you for all the prayers, love and support. As always .... GO TEAM DELANEY!

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

Tuesday, November 26, 2013

Monday Recap

Delaney slept well last night in length, but seemed restless. She was up at 4am so Mommy and Daddy got a little more sleep than normal as did Delaney. It warms our hearts to see Delaney awake and in such good spirits and smiling. One of Mommy and Daddy's favorite moments that the morning brings is to watch the smile on Delaney's face once she hears brother come babbling down the hall. She immediately was to hug and kiss him. Today was blood draw day, and our home health nurse was able to come over draw Delaney's blood and take it to Walnut Creek. We are anticipating that Delaney will be neutropenic, but only the counts will tell. As we waited for the blood counts to come back Delaney played with brother and grandma painted some of Delaney's toes and finger nails. With some assistance Delaney was able to pull her self up to a standing position she still is improving and getting stronger. The results came back for the blood and she is in fact severely neutropenic, also she will more than likely need a blood transfusion and platelets this Friday which will require an admission to the Oakland pediatric ward since the clinic will be closed. The rest if the afternoon was spent aging with brother and watching a few shows. Delaney wants to spend more time being active which makes is happy! Unfortunately, Delaney did vomit this evening. We have been trying to stay on top of all of her antiemetics, but the chemotherapy won today. Hopefully, we can have a vomit free day tomorrow. Mommy went to the store today and got a few foods for Delaney to eat. And to our surprise Delaney asked for some applesauce and chocolate pudding! She did not eat much, but we were so happy to see her eat! Brother finished off her chocolate pudding Delaney was asleep by 8pm and has since been resting peacefully. Time for Mommy and Daddy to give her some meds and head to bed. Thank you for all of the love, prayers and support! GO TEAM DELANEY!

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

Monday, November 25, 2013

Sunday Recap

Sunday Recap,

It was a successful night and day. Delaney did not vomit at all. However, that is not to say that she was not nauseated, because she still was. And yes the morning did begin at 4 am better than it has been. The day consisted of painting nails, playing with brother and watching The Croods. To our surprise, Delaney wanted to wear her eye patch today and didn't want to take it off! She has to patch her strong eye to help her weak eye build muscle. The pressure from her tumor caused some muscle weakness in her left eye. Delaney seems to be interested in eating, but is still apprehensive about it. She will ask for something and either look at it or take a small bite and say "me no want". Her oncologist says that she is hardwired that food will make her throw up, so we are doing our best to curb that feeling. Delaney is set on standing! She can stand for short periods of time (1-2 seconds). For the most part today was a great day! Thank you all for your love, prayers and support! GO TEAM DELANEY!!

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

Sunday, November 24, 2013

Friday and Saturday Updates

Saturday Update...

This morning began at 3 am again for Delaney. But by 5 am she did vomit again, only once, and that was it for the day. It is part to do because of her waking up on a semi full stomach from her over night feeds. We are trying not to taper down on the overnight feeds since this is her biggest and longest stretch for intake of food. We have tried to adjust her sleep schedule but it is so hard with all the medications and her need for rest. So for now this is becoming the new normal for Delaney. Delaney's home health nurse came by again this morning at the requet of Mommy and Daddy because when we flushed and heparin locked her lumens on her Broviac last night they were very very sluggish and seemed as though they might be blocked by the morning. So the nurse came over to help us work the lines just in case, and to our relief the lumens worked good and we could move on with our day. Delaney took an early morning nap around 8am. And when she did Daddy slipped Delaney's foot braces on for 1 hour to help work her feet into a neutral position. After her nap Delaney wanted to play with brother in the toy room on and off all day, wanted to try and walk , crawl and stand up by her self. This is great considering during chemotherapy cycles 1, and 2 Delaney did not want to get off the couch. Grandpa and Grandma stayed and helped out for most of the day, Grandma will stay the night as usual. Mommy was able to sneak in a hour or so at The Team Delaney Crossfit Challenge, to thank those she could, for their support. Thank you to all who showed up to show their support for Delaney, it will be a good highlight in Delaney's story. And a big thank you to Rich and Rachel Hill for organizing such a wonderful event and continuing to fuel the fire of Team Delaney! Again it was a very full, non stop, busy day. Delaney did good with her nausea for the remainder of the day, she was able to snack on a couple of things, and drink some fluids. It is 7pm and Delaney is asleep, looks like we are in for another early morning. Thank you for all the prayers, love, and support. As always..... GO TEAM DELANEY!!!

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

Friday Update

It was a difficult night and morning. Delaney was up at 230am nauseated and vomited around 3 am. Little did we know that this was the beginning of our morning. Following Delaney vomiting, she seemed to have some relief, and wanted to wake grandma up to hold her and play with her at 330 am. And of course grandma was there ready to go. Grandma has been staying with us around the clock when Delaney comes home from treatments, it is invaluable to have such help. By now it was 4 am and Mommy let Daddy go back to sleep for awhile, but less than an hour later Mommy was waking Daddy telling him that Delaney had vomited again. After both vomits it was right after Delaney was due for her medications so some medications may have come back up and we cannot give her more because we do not know how much her body absorbed. Also we start to play catch up with her fluid intake because dehydration can happen quick and that is a big concern. We watched Delaney closely until she fell asleep around 830 am. Then Delaney's home health nurse came by to asses her a she how her in patient chemotherapy went and see how Delaney is doing. The day revolved around giving Delaney fluids through her feeding tube, helping her keep her fluids down, and waiting for the time to give her anti nausea medications, she is getting some every three hours around the clock. Delaney was very very nauseated all day. But she always remained happy and smiled, and still wanted to play with brother. At one point Delaney wanted to try and walk on her own, she took one step toward Mommy from Daddy's arms. She works so hard. Delaney went to sleep around 730pm, grandpa came over after work and sat by her while she slept. Delaney needs the rest. Mommy and Daddy's day is still not over. Sorry the update is short and late, Daddy and Mommy were tired. Thank you for all the prayers, love and support! As always...

GO TEAM DELANEY!!

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

Friday, November 22, 2013

Thursday Update

Delaney was discharged today after 3 days of chemotherapy, and isolated to her hospital room. This 3rd admittance for chemotherapy seemed much longer, and that there was more down time. Delaney did great with all that she had to deal with and continues to leave Mommy and Daddy amazed. On the other hand, the down time and long days sometimes brings an unbearable weight of emotions, in the silence of thought for both Mommy and Daddy. Most days everything that is going on brings Mommy and Daddy to tears. Mommy and Daddy are more than willing to carry the weight or worry, stress, and uncertainly for Delaney, and everyday just showing her nothing but love and happiness. Delaney woke up ready to go home, she was ready to play with brother. However, that would have to wait she has until 1pm for her eighteen hour IV drip to be completed. Mommy had some more craft items to keep Delaney busy and Daddy went to pick up refills on medications for Delaney. As she did yesterday, Delaney did retch or dry heave as to vomit, however she did not vomit. We can see that she is vey nauseated and does not feel well. Delaney also had a blood draw this morning to give is an idea on her counts before we leave the hospital. When Delaney got home she had a burst of energy when she saw little brother and they played for a little while, but not soon after did she not feel well. Tonight Mommy and Daddy also had to change her dressing, that covers her Broviac, as well as do a cap change on both lumens on her Broviac. It took some time but they were both completed. Following that Delaney went to sleep at 6 pm. Mommy and Daddy worked to clean and put away clothes, toys, and catch her up on her medication chart and times. It has been a long rough week for Delaney, things will only get tougher in the days ahead but Delaney is our little fierce fighter, ready to meet the challenges.

GO TEAM DELANEY!

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

Wednesday, November 20, 2013

Wednesday Update

Day 3 of round 3 is in the books. We are hoping this will be our last inpatient here at Kaiser Oakland. Delaney woke up around 5am this morning and was very cuddly. She cuddled Mommy for about another hour or so before waking to her usual energetic self. PT came by as well as Occupational Therapy. They are very pleased with Delaney's progress. She had fun doing stamps and playing with a peg board. 12pm rolls around and it's time for chemotherapy to begin. We were very anxious because today Delaney gets cisplatin. This chemotherapy drug causes serious nausea and vomiting. Daddy met with the pharmacist to make sure we had full doses of all of her antiemetics around the clock. The goals again today were simple, keep Delaney happy, no vomiting, no nausea. Chemotherapy finished up about 7pm and unfortunately We could tell Delaney wasn't feeling very well. She did have a very small vomiting episode. But all together today was still a good day. Delaney had a few visits from a few of her favorite nurses and doctors. This always cheers Delaney up! Another early night for Delaney. She was out by 7:30pm, which means we will have an early morning tomorrow. Mommy and Daddy are taking full advantage of the early bedtime and will join Delaney. We would like to take a moment to thank all of the staff here on the 10th floor Pediatric Intensive Care Unit and Pediatric Ward. You have all been amazing and we appreciate all of your patience and the excellent care provided for our angel. We hope the next time we see you is just for a visit!! We appreciate all of the love, prayers and support. GO TEAM DELANEY!!

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

Round 3 Day 2

Another early morning for Delaney, She was up at 430am. Day 2 of 3 for chemotherapy treatment. There was no episode of vomiting last night. Mommy and Daddy took turns entertaining Delaney in the morning. Delaney looked good and was in great spirits and the goals for today are simple; keep Delaney happy, entertained, with no nausea or vomiting. Mommy headed out early this morning to get the new movie Planes and a few other craft items to keep Delaney busy through out the day. By the time Mommy came back it was time for pre chemotherapy anti nausea medications. Today the chemotherapy treatment started at 12pm, Delaney handled the chemotherapy well today and so far Mommy and Daddy were successful at keeping Delaney entertained. Grandma was able to sneak out for a visit and cuddle Delaney, both Delaney and Grandma enjoyed it very much. Today seemed to be very long and slow, but it goes with the territory of being stuck in a room for isolation and chemotherapy. Delaney has not had much if any appetite still, but she is willing to taste and sip on food and liquids. It is a very very early night, Delaney is asleep at 5 pm. But Mommy and Daddy will stay up for a few more hours meeting the new nurse and doctors for the night and going over medications as well as showering and getting things ready for tomorrow. Delaney will wake before the sun, and she will greet the sun when it rises and meet the day and it's challenges before it is ready for her, because after all that is just part of her Fierce! Thank you to ALL who give, show, and love our daughter Delaney. Thank you for all the prayers, love and support. As always.... GO TEAM DELANEY!!

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

Tuesday, November 19, 2013

Day 1 of Round 3 of chemotherapy for our Fierce Fighter.

The morning began with meeting the doctors, nurses, and Delaney's oncologist to go over the treatment for the next 4 days, as well as going over how Delaney is doing. Delaney will get chemotherapy Monday, Tuesday, Wednesday, and on Thursday she start her GCSF injections to start to bring her white blood cell counts back up. The chemotherapy will be aggressive, for that reason Delaney will be receiving anti nausea medication every 6 hours to hopefully keep her vomiting to a minimum. Today Delaney received 3 different chemotherapy drugs, followed by a twenty hour MESNA IV drip to protect her bladder form the chemotherapy. Delaney is looking and doing great, we know it will be a gradual decline from here to being sick again, once receiving the chemotherapy. Physical therapy came by to assess Delaney, she is getting stronger, more coordinated and back to her self, but will need lots of physical therapy in the years to come. Physical therapy also brought some foot braces for Delaney they had ordered. Hot pink of course! They Velcro to her foot and go half way up her calf to keep her feet and toes at a proper angle, because one of the chemotherapy drugs she receives causes foot drop, or her foot and toes curl inward, making it extremely difficult for her to walk or use her feet and legs. We will start off having her wear them in her sleep for 1 hour at a time. The next big obstacle is for Delaney to get a new feeding tube, and move it to the other nostril. This is very difficult as there is really no other way to put one in except while she is awake, Daddy holding her tight, and two other nurses inserting the feeding tube. The feeding tube goes up her nose, then turns down the back of her throat, down the esophagus and into the stomach. An x-Ray is need to confirm placement. The first attempt went down well 32cm. Taped it to her cheek, x-Ray came and took a x-Ray, and the results came back, it was 2.5 cm short and it needed to be advanced again. So had to take the tape off, Daddy held her again screaming, and crying the second attempt was not as easy. After one more x-ray it confirmed the tube is in the right place. Occupational therapy also came in. The therapist thinks Delaney is making great progress and gave us a few more exercises to do. It has been a very busy fast paced day but Delaney did well, and is resting. Our goal is to make her as happy and comfortable as possible and be right by her side. It has been an exhausting day for Delaney, Mommy, and Daddy. One day at a time, a few goals each day, and one fierce, fierce, little fighter. Thank you for all the prayers, love, and support. As always ...... GO TEAM DELANEY!!!

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

Monday, November 18, 2013

Monday Morning Update

Delaney was admitted last night to begin cycle 3 of chemotherapy. As tough as it is to be admitted, Delaney was greeted with smiles and well wishes by the nurses on the pediatric ward floor. Yesterday, Delaney had a relaxing day spent at home with the family. This is what Mommy and Daddy wanted. While Delaney played with brother and relaxed Mommy and Daddy were busy packing all that we will need at the hospital, Delaney will still be on precautions from the c diff infection, so for the next 4 days and nights she cannot leave her room. Mommy and Daddy are going to do their best to keep Delaney happy while in the hospital bed. While Delaney napped yesterday, Mommy had an opportunity to go to the Cut for a Cure at Classic Images Salon. It was truly incredible the amount of support for Delaney. I was greeted by many familiar faces, as well as many unfamiliar faces. We are so grateful for each and every one of you! As the time got closer for us to leave we were packed and ready to go, but ready to go mentally and emotionally is another thing, it is still very hard and full of so many mixed emotions. Delaney napped on the way to the hospital and woke up in her room, she was a little anxious but Mommy and Daddy were able to calm her down and get her settled on. Before bed it was the normal height, weight, vital signs, hooking Delaney up to the monitor, cap changes, blood draw, and finally holding her up to IV fluids to pre-hydrate her before chemotherapy. It was a restless night for Delaney, Mommy, and Daddy. Delaney was up early with her game face on, and her eyes are alive with her fierceness! She is ready for round 3. Thank you for all the prayers, love, and support. As always........... GO TEAM DELANEY!!!!!!

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

Sunday, November 17, 2013

Weekend Updates

Saturday Night

Team,

Tonight will be a short update. I spoke with Merlin and everyone is going to bed. Today was a pretty good day as the family took time to prepare to go back to Oakland tomorrow for round 3 of chemo. Lacey and I dropped off about 5 gifts from friends and family for Delaney, which she loved. We haven't seen Delaney in about two weeks due to her state so it was nice. She had lots of energy and was fierce!!! We hope that she continues to be fierce as a very difficult round 3 starts. Merlin and Janice have to balance 24/7 medical needs with Delaney and TEAM DELANEY has all made that possible with the support and love.

GO TEAM DELANEY!

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

Friday Update...

The morning and first half of the day was smooth. Delaney was in such a great mood and when she feels good and is having a good day, she is Mommy and Daddy's sunshine. Delaney's smile and love can take away the pain, frustration, uncertainty, and can make Mommy and Daddy forget about the agonizing trials that surrounds them. Delaney had an appointment at UCSF today for Mommy and Daddy to meet with the pediatric oncologist to discuss their findings and thoughts about Delaney's diagnosis. This also was an opportunity for the oncologist to meet and see Delaney in person. Mommy and Daddy thought they were ready to discuss and review what they had already known about Delaney's diagnosis, but re-living and hearing the conversation about her diagnosis again, was still so painfully sharp, unforgiving, and unbelievable, it brought Mommy to tears and left Daddy in a teared up daze. The rest of the appointment went as expected. We left UCSF and for all the times back and forth to UCSF Delaney was finally awake for the first time to go across the the bay bridge, she thought it was so cool, she had a big smile. When we got home Mommy and Daddy could some what tell that Delaney was not feeling good. Delaney vomited twice, and began to have less and less energy, the afternoon turned rough for Mommy and Daddy ever since the appointment. Delaney was not felling well and finally was able to take a nap at 6pm and has been sleeping since, we shall see how the night goes. It is awesome to see all those that wear their hot pink and black for FIERCE FRIDAY! And of course with tradition it was pizza and cookie night but Delaney was not feeling well to try either. Thank you for all the prayers, love and support. As always..... GO TEAM DELANEY!!!!

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

Saturday, November 16, 2013

Thursday and Friday Update

Friday Update...

The morning and first half of the day was smooth. Delaney was in such a great mood and when she feels good and is having a good day, she is Mommy and Daddy's sunshine. Delaney's smile and love can take away the pain, frustration, uncertainty, and can make Mommy and Daddy forget about the agonizing trials that surrounds them. Delaney had an appointment at UCSF today for Mommy and Daddy to meet with the pediatric oncologist to discuss their findings and thoughts about Delaney's diagnosis. This also was an opportunity for the oncologist to meet and see Delaney in person. Mommy and Daddy thought they were ready to discuss and review what they had already known about Delaney's diagnosis, but re-living and hearing the conversation about her diagnosis again, was still so painfully sharp, unforgiving, and unbelievable, it brought Mommy to tears and left Daddy in a teared up daze. The rest of the appointment went as expected. We left UCSF and for all the times back and forth to UCSF Delaney was finally awake for the first time to go across the the bay bridge, she thought it was so cool, she had a big smile. When we got home Mommy and Daddy could some what tell that Delaney was not feeling good. Delaney vomited twice, and began to have less and less energy, the afternoon turned rough for Mommy and Daddy ever since the appointment. Delaney was not felling well and finally was able to take a nap at 6pm and has been sleeping since, we shall see how the night goes. It is awesome to see all those that wear their hot pink and black for FIERCE FRIDAY! And of course with tradition it was pizza and cookie night but Delaney was not feeling well to try either. Thank you for all the prayers, love and support. As always..... GO TEAM DELANEY!!!!

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

Thursday Update

It was a good night, but Delaney was up at 430 am. Mommy and Daddy try and get her to go back to sleep, usually with some success, but not today. Delaney waited to hear for little Merlin to wake up, this puts a big smile on her face, ear to ear. We tried to make the morning as easy, and relaxing as possible as well as giving some balance between the hospital and home, because Delaney has 2 appointments today. Delaney enjoyed watching the new movie Turbo, a super fast snail, with brother before she had to leave. Her 2 appointments today were a audiology test and a renogram. As you may remember she will do this after each cycle to see how the chemotherapy is effecting her hearing and kidney function. The hearing test went well and the doctor said that he is not seeing any negative effects from the chemotherapy after 2 cycles. Next is the renogram, this test is a challenge because she must lay completely still for 30 minutes. It took the two doctors and Daddy to try and calm and contain the fierceness in Delaney that did not want to lay still. The doctors were concerned that she had too much movement during the renogram and that it might throw the test off because the movement made it hard to track the radioactive dye. Delaney calmed down and was able to finish the renogram. The doctor said they would call us in an hour or so to see it the test was successful or if she will need to come back and repeat it tomorrow. The doctors called Mommy and Daddy once we were home and said that the test was good enough and there was no need for another renogram. A relief for Mommy, Daddy, and of course Delaney. Once home, Delaney played with little brother and then it was nap time. Delaney and Mommy took a nap together on the couch. It's 8pm and she is still "napping". It's gonna be a long night! Hopefully an uneventful one. Thank you for all of the love, prayers and support. As always..…...GO TEAM DELANEY!

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

Thursday, November 14, 2013

Wednesday Recap,

Today was the last chemotherapy treatment for cycle 2. Delaney has 4 more chemotherapy cycles to endure. Again Delaney was in such a wonderful, loving mood today. Seeing her that way gives mommy and daddy the endurance, focused energy, and happiness needed to tackle, and keep pace with the seemly endless demands of her treatment. Delaney's appointment with her oncologist went good, he said that Delaney is moving right along and on schedule, thankfully she did not have any major set backs form the c diff infection or the stem cell harvesting. Delaney's physical check up was good, she still needs to be on overnight feeds to obtain half of her daily caloric intake, since she does not eat well through out the day. The goal is for her to maintain her weight, because so often, most chemotherapy patients will loose weight, mommy and daddy are working hard to help her maintain her weight. Delaney then received her dose of chemotherapy, followed by a normal saline flush, and we are able to go home. Once we were back in town we received a call from her oncologist team and said that we needed to go to an optometrist appointment at 130 pm today. Mind you we just left Oakland kaiser and were back in our home town. Delaney needs a baseline test for her eyes, because the pressure she had on her brain from the tumor can cause permanent damage to the optic nerve, and she could go blind in that eye. So we turn around and back out to Oakland we go, it is very frustrating to be so close to home and turn right around. However we do not have a choice in the matter, it is what must be done to help Delaney have a successful recovery. We met with the optometrist, Delaney had to have her eyes dilated in order to see her optic nerves. From the examination the optometrist said her optic nerves are normal, and she does not need glasses. Although Delaney does need to wear and eye patch (which we have been trying to get her to do) for 2-3 hours a day. We finally made it back home again. Delaney played with brother, and was very active. She is almost crawling again, mommy and daddy are shadowing her so she does not fall and hurt herself, but she is getting stronger. We love seeing Delaney so active and happy, we cherish these moments and take them in, for we know what lies ahead. Delaney will close out the week with 3 more appointments.

As Delaney finishes up a difficult chapter of her story, we have all pulled something from it. But tonight she had some help with the last uplifting page and it comes from the support of communities around, family, friends, and strangers. They filled the page with love, prayers, motivation, and the true human character of taking care of each other.

Thank you for all who were able to attend the event at Sauced in Livermore, you have left us speechless, thank your for all the prayers, love, and support. As always GO TEAM DELANEY!!!

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

Wednesday, November 13, 2013

Shirts and Hoodies

BACK BY POPULAR DEMAND AGAIN!!!!!!!!!! We are NOW Taking WAVE 6 Shirt and Hoodie orders till Sunday Nov 17th 5pm! Shirts $10 - Sizes: Youth M-L Adult S-3XL Hoodies $30 - Adult S-3XL These must be paid via paypal to travisbnewton@yahoo.com Please verify you are sending to correct email address and for Shirts and Hoodies ONLY! I personally verify each order, so if you do not hear from me in 1 day please contact me. 925-337-3371 ________________________________________________

 Shirt and Hoodie Order Details Please note the shirts and hoodies are not meant to be a fundraiser. The $10 for shirts and $30 for hoodie just covers all the cost related to the shirts and we want as many people to purchase as possible to show support so we keep the cost down for everyone. Please send pictures via text to 925-337-3371 or email to travisbnewton@yahoo.com of you or a group wearing your shirts in the community so I can share. We have had over 1,500 shirts purchased to date. If you would like to donate and help Delaney with medical expenses that are not covered by insurance please donate to the official Team Delaney Youcaring.com site (link below). This money goes directly into a medical savings account marked only for Delaney's recovery and treatment needs which add up fast as some of you can relate to or understand in similar situations. I cannot thank everyone enough for what we have raised and continue to raise, you all mean the world to me and Delaney's Family. Love, Uncle Travis

 https://www.youcaring.com/medical-fundraiser/team-delaney/92222


 ---------Here are details for WAVE 6 Orders------------
 Shirts $10 - Sizes: Youth M-L Adult S-3XL
 Hoodies $30 - Sizes: Youth M-L Adult S-3XL

 We will place the order Sunday Nov 17th so all orders must be submitted by 5 pm that day. Anticipated arrival is Dec 6th. Shirts/Hoodies can be picked up at Aunt Jackie’s house in the Livermore area, Uncle Daniel will delivery CPP shirts to office, and all LPFD employees shirts / hoodies will be delivered to Station

1 . If you cannot pick them up at any of these location, please include an additional $10 in your order and we will ship all the shirts you order anywhere in the country. For hoodies they are larger and heavier and will require (Hoodies are $10 EACH to ship due to size and weight) To purchase, please do the following:

 1. Submit the total amount for your shirts and or hoodies (and shipping if necessary) via Paypal.com to travisbnewton@yahoo.com and I will confirm your order within 24 hours.

 2. Include your name, the number of shirts you want in each size, number of hoodies you want in each size and where you will pick up and your address if you need the shirts shipped.

 3. Paypal needs to be used so we can track the large amount of orders we are receiving. Once we place the order, we anticipate receiving the shirts and hoodies by Dec 6th. When they arrive I will post an update on Facebook and provide more information on pickup locations. Thank you all for your love, support, and prayers. Love, Uncle Travis Go TEAM DELANEY!! "And though she be but LITTLE, she is FIERCE!"

Tuesday Night Update

Team,

To date, this day over all has been Delaney's best day since she became sick. Delaney's mood, appetite, energy level and number of kisses she gave out was just what we needed to see! She is such an amazing little fighter! We took her on her first walk around the corner. She is a little apprehensive about doing new things, but she came around and actually kicked a few leaves with her brother (with Daddy's help of course). Since Delaney is feeling a little better and actually eating a bit we have been attempting to cut back on her antiemetics (anti nausea) meds. Rather than full doses every 6 hours we are trying half doses every 6 hours or even every 8 hours. She will be back up to full doses with the start of round 3 just a few short days away. To our surprise Delaney ate a big bowl of Mac n cheese for lunch and picked on a few other foods for dinner. This is the most she has eaten in almost 10 weeks. It feels good to see her eat and actually enjoy it. Of course the rest of the day was spent chasing little brother around, making attempts to crawl/stand and just being the silly girl we are used to. Tomorrow, is another out patient chemotherapy session. The last chemotherapy for round 2! Delaney is asleep early, so we are all taking advantage and going to bed early! Thank you for all of the love, prayers and support! GO TEAM DELANEY!!!

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

Tuesday, November 12, 2013

Tuesday Recap

The days still continue to be long, and stressful, and by the time Delaney is asleep Mommy and Daddy are exhausted. Delaney was up and this morning early as usual, 5am, being the fun loving 2 1/2 year old that she is. The nurses at UCSF began a pre treatment for her Broviac lines at 6am, they administered anti coagulant in her lumen lines and let is sit in the lumens for around 3 hours. They are doing this so early just in case that her broviac does not have the blood flow that it needs to harvest, that there will be time to have an operation to put in apheresis line in. Delaney was wheeled up to the 11th floor to begin the harvest and we will find out in moments if it will work. We met with the nurse at the hemodialysis clinic and were explained the process. Todays goal is to have the broviac flow good enough for harvest, they must harvest stem cells a total of 6 separate times to collect around 2oz. or 60ml of stem cells, but there must be a certain concentration or number of stem cells required to in order to rescue Delaney after her last 3 cycles of chemotherapy. There is no guarantee they will get the required amount on the first harvest, she may have to come back for future harvests, a test sample once the harvest is complete will let us know. The system is primed with a donors blood then Delaney's blood is removed through one lumen, supun up for harvest and returned to her through the other lumen. Here is the big moment for Mommy and Daddy, the nurse is getting ready to remove the TPA and flush her lumens. The nurse removed the TPA and flushed the line. It works, this is a huge relief for Mommy and Daddy, Delaney will not need the operation and now can move on with the harvest. The harvest has started and we find out that Delaney's broviac is positional and that line will not get the necessary pressure because the line gets pinched if she moves or sits in a certain way. We spent a lot of time finding the right position and it just so happens it is Delaney laying on her back on mommy. So mommy layed flat on her back with Delaney on top of her, she did this for 5 hours straight until the harvest was complete. It was quite a challenge to keep a 2 1/2 year old entertained on a hospital bed in roughly the same position for 5 hours. The harvest is now complete and Delaney did great. She is now taken back to her room in a wheel chair. She is wiped out, but she did what needed to be done, to rescue her self. Now Mommy and Daddy wait in anxiety, stress, and most of all hope that Delaney will only have to endure this once. We got the results, around 615 pm last night. They were able to harvest around 70 mls, or the equivalent of 4 bags, 58 million stem cells, to our relief Delaney made it over a big hurdle today, this single harvest is enough to rescue her 3 times, once after each cycle of chemotherapy and have one bag in reserve. Mommy and Daddy are so excited. Delaney can now be discharged, she can head home for a day of rest, that she will need, she has more chemotherapy on Wednesday. Delaney is a fierce fighter, Mommy and Daddy are so proud of her. Thank you to all of the medical staff that had a hand in Delaney's care at UCSF. Thank your for all the prayers, love, and support. As always....GO TEAM DELANEY!!!!!

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

Monday Morning Update,

Yesterday was a very busy day. The antibiotics Delaney has been taking are starting to work. She looks like she is feeling even better. Another blood drawn was done to check her counts and they are trending upward, especially her white blood cells. It is critical information because it is when her white blood cells are on the rise, it is time to harvest. We met with her oncologist doctor and he was pleased to hear that Delaney did not have a fever, more or worse loose stools or any other complications. This allowed Delaney to be ready for discharge, she will now be on one more medication for 14 days. Delaney was discharged around 1pm. UCSF received Delaney's blood count results yesterday morning and contacted Mommy and Daddy prior to leaving Oakland Kaiser and said that they will have a bed for us that same day, and admit Delaney to UCSF that same night at 6pm. So we had a little over 4 hours to go home and give Delaney a chance to see little brother Merlin, Grandma, Grandpa, enjoy a change of scenery and let her have time to her self. In the mean time Mommy and Daddy rushed to wash clothes, eat lunch/dinner, pack, refuel the vehicle, and spend a few moments with little Merlin. Delaney enjoyed her short time at home but it was a quick turn around and it was off to UCSF. On the drive over to UCSF as Delaney took a nap in the car, Mommy looked back at Delaney's admissions to hospitals starting when she was admitted to Walnut Creek Kaiser. It has been 64 days since the start of this nightmare, and out if those 64 days Delaney has been admitted for 43 over night stays and 9 out patient visits or appointments. This is a total of 52 days in a hospital setting. That only leaves her with 12 days scattered throughout, all the while Mommy and Daddy right by her side, always. We have finally arrived at UCSF, and were admitted. We met with doctors and nurses to go over the plan, and contingency plans for the days ahead. Delaney had another blood draw, to get a more accurate count, her white cells are still rising this is perfect for harvest, but her platelets have dropped a bit and will need another transfusion tonight. Number 4 this week. The plan is to use her Broviac to draw blood out of one of the lumens harvest the stem cells and send her blood back into her through the other lumen. This will be a 5-6 hour harvest, in hopes that they will collect enough at one time, if not Delaney will be back tomorrow or stay. The hope is that during this process she will have adequate flow of blood. If she does not she will have to have an operation in the morning to put another line into her groin, in an artery. We are praying her Broviac will work and she will not need another operation. It has been a long week, but Delaney's smile alone motivates us, and keeps us focused on her care. Thank you for all the prayers, love and support. As always.... GO TEAM DELANEY!!!

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

Saturday, November 9, 2013

Back To Pediatric Ward...



Team, I just got off the phone with Merlin and Janice and unfortunately they are taking Delaney back in tonight, so this is the best update we can give at the moment. Delaney received a platelet transfusion earlier today with little results and due to her neutropenic state the doctors called them tonight and told them to bring her in. Delaney cannot fight off any infection on her own so they need to be admitted so she can receive antibiotics she can't get at home.

Merlin and Janice want to thank everyone for their support on our 1st official FIERCE FRIDAY! Janice said she got so many great pics and it put a smile on all their faces. It was a huge hit today.

GO TEAM DELANEY!

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

Thursday Update

Team, The past few days have been very taxing on Delaney and the family. Some post may have been shorter normal. Delaney and the family have had a long few days and these will continue. The support everyone has been giving is amazing and truly motivational. The Team has been amazing with donation and gifts that continue to come in. Most of you will see the gifts in photos with Delaney and it brightens her day. This week alone I have another 5 packages to drop off in their garage for her. Even, myself I don't want to be in contact, in fear of making her sick. We appreciate all the gifts that she receives, and thank everyone for the support. We want to personally thank everyone for what you has done and continues to do. As a brother, and an Uncle I cannot express in words what you all are doing for Delaney. Love, Uncle Travis.

Thursday Update...

We got home and in bed by 2am last night after being discharged from the hospital. We were glad we could come home. The best place for Delaney is at home especially when her counts are so low, and she really loves being at home. Mommy was up with Delaney a little before 5 am, Daddy was up shortly after. Essentially we got a good nap in last night. It was a difficult day today. We can tell Delaney is still not feeling well, her body is not bouncing back as quickly as it did last time. Delaney's mood was up and down all day, and it is hard on everyone. Another blood draw today, Mommy gathered supplies, Daddy got Delaney ready ( telling her what Daddy needed to do), Grandma ushered little brother to the other room to play, and got the blood we needed. Grandpa stopped by at the perfect time with much needed coffee for everyone. Daddy grabbed his blood and was off to Walnut Creek again, but this time little Merlin came along with daddy to help drop off sisters blood. The results came back quick, her red blood cell count came back great, the transfusion did it's job last night, however her white cell count went from 0 to 100. This was not the increase we want, and her platelets are still low and will need another transfusion again, tomorrow, the 3rd one in 4 days. Delaney is still severely neutropenic and again it means shuffling her date to have her white stem cells harvested from UCSF moved. She must be harvested at her peak when her body is pushing out as many white cells as possible, so they can collect as many as they can, to give back to herself at a later time. Delaney slept for a good part of the afternoon. At the same time Mommy was on the phone working on scheduling Delaney's appointments between Oakland Kaiser and UCSF, there are so many factors that have to be accounted for. Delaney did find some time to play, and she played doctor on Woody, listening to his heart, checking his eyes and taking his temperature. She was very cute. It was very hard day, Delaney is resting, knowing tomorrow is another day. Thank you for all the prayer, love and support.

As always.....GO TEAM DELANEY!!

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

Thursday, November 7, 2013

Wednesday Update

As you last heard Daddy fell asleep while writing another page of Delaney's story because he was so tired. That sleep Mommy and Daddy were hoping for we did not get, we only got 3 hours of sleep. Delaney vomited again last night and was very restless, and medications still had to be given. She was uncomfortable due to the chemotherapy still, and the fact that her blood counts are so low. Mommy, Daddy and Delaney rested on the couch, where we could look outside, and waited for the sun to rise. It has become Delaney's "new thing" to point out when it is light outside and says "sun come out". Why you may ask, well, because we are up almost everyday before the sun comes up and we try to use it as leverage to not get up until the sun gets up. But it makes us laugh because all of a sudden she realizes it is not dark anymore and is so excited to point it out to us. This morning it was time for another blood draw, and drive to Walnut Creek to process the blood. The counts today are important. They will decide if she will need a blood transfusion, and how many white cells there are to see if harvesting can begin tomorrow. The results came back quick almost by the time Daddy got home, the results arrive via email and we can look at the numbers and try to anticipate what the oncologist will say. The oncologist called us and said in fact she does need a blood transfusion, and her white counts are not up high enough for harvesting. The doctor also said we will have to wait for a call to come in for the blood transfusion because their beds are all full. In the mean time, Delaney's home health muse came by to assess her. Delaney is doing ok today, she is extremely tired (due to low blood cell count), has a low grade fever that we hope does not spike, and we can just see that she does not feel well. We gave Delany all the opportunity to rest and not use her energy, she slept a lot today. It is now almost 4pm and we are still waiting to be called to go to Oakland blood. We are packing our bags, just in case. Finally a call at 530 they have a bed for us to be admitted to, Delaney needs a room to her self, she can have no contact with any other patients, because she is neutropenic. It is now 7pm we are in her room planning out what medications she still needs, and waiting for the blood to come. Once the blood gets here, it is a 4-5 hour transfusion. We must also do 2 cap changes in her Broviac before we go home. We will not expect to be discharged between 12 am and 1 am tonight to head back home, we will have been up for almost 24 hours, with only a 20-30 min nap here or there. It will be a long night. It is safer for Delaney to be at home when she is neutropenic rather than at the hospital with a higher potential for infection. Theses are the long days, these are the days were you have run out of fuel, you run out of fumes to burn, you have nothing left, except for the love of your child, and then you realize just how far you can go. Delaney has held her own today, she remains fierce, that is one thing chemotherapy cannot kill. Thank you for all the prayers, love and support. As always .... GO TEAM DELANEY!!!

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

Wednesday, November 6, 2013

Tuesday Update

Daddy tried to write down more of Delaney's story last night but was so tired he fell asleep while he was trying to write it. Essentially we have been on the go since 330 this morning. Delaney woke up at 330 am and vomited. We were right at her side, caring for her and soothing her. We stopped her feeds so that she did not get more nauseas and vomit again. We will try to make up those calories through out the day. Then it was time to clean sheets, change clothes, and get Delaney settled. The rest of the morning went well and it was time to head to her out patient chemotherapy treatment. The doctor said that Delaney is doing well, and that she may be able to stop taking some of the medications that she has been on since her operation. This is a sigh of relief for Mommy and Daddy because this means Delaney's body can now take on the process of salt regulation and not to have to depend on steroids. More blood work was ordered while we were at the clinic to check Delaney's counts. We waited and found out Delaney's white blood count is 0. She is at extremely high risk for infection. She also needed a platelet transfusion due to her counts. Her oncologist is hoping she will not need a blood transfusion this time, but more labs tomorrow will determine this. We waited for the platelets and were able to go home about 3pm. Delaney does well with the transfusions. She gets pre medicated due to a reaction she had last time. She slept the whole way home and even for a little bit after. Delaney's mood was up and down. She just wanted her Daddy, and of course Daddy held her until she felt better. The rest of the night was pretty calm. Bath, brush teeth, watched a show with brother and to our surprise, Delaney was asleep by 8:30. We were able to start her feeds a little earlier in hopes to give her a few extra calories. We are hoping for an uneventful night. We can all use some rest. Thank you all for your prayers and support. GO TEAM DELANEY!

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

Tuesday, November 5, 2013

Multiple updates

Team,

Sorry for the delay. We post many pictures on FB and due to timing it is hard to get everything here as well. Here is update from past couple of days. Monday Update Waking up every few hours, through out the night to administer medications and Delaney's earlier than the bird mentality is is taking a toll on Mommy and Daddy. Not to mention the constant care through out the day. Delaney receives 10 different medications over the course of 24 hours. Some are given every 6, 8, or 12 hours apart. Delaney's nausea seems to tapering down, a sigh of relief for us. However, we are always on our toes, watching her for any signs or changes. Today was a day for us to watch her temperature, this is a sign of infection, because she is neutropenic. Thankfully Delaney was able to stave off a fever today. Delaney's home health nurse, whom she has grown fond of, came by for a routine check up, discuss concerns, and for us to ask questions. By early morning Mommy and Daddy could tell that Delaney was tired and not feeling well, which goes hand in had with her blood counts dropping. Seeing how she was, we made the decision to opt out of physical therapy today. It is hard because we know it is important for her, but she needs her rest. She rested a lot today, but that is good, hopefully her blood counts swing back up in a couple of days. Mommy was in contact with UCSF today, getting questions answered about the harvesting that is to be done later this week on Delaney. Delaney had a few moments today where she wanted to try and crawl again, she is trying so hard, slowly but surely. Being neutropenic is a big problem, so much so that Delaney is not able to brush her teeth with a tooth brush, because the bristles in the tooth brush could cut her gums, and be way for an infection to start. So she has to brush her teeth with what looks like a tiny foam ball no bigger than the tip of your finger. All the things Mommy and Daddy must learn, and watch out for when Delaney is going through chemotherapy. Delaney is back at it tomorrow, at the infusion clinic, for more chemotherapy, this will be an out patient treatment, following an appointment with her oncologist. This is still part of her cycle 2 of chemotherapy. She just keeps pushing forward. Thank you for all the prayers, love, and support. Plus mommy and Daddy like hearing "GO TEAM DELANEY" shout outs while they are out and about it is good for their spirit, and we do tell Delaney also. As always.... GO TEAM DELANEY!!

Sunday Night Update

Setting our clocks back did not do much for our sleep. Delaney was up at 5 am and it seemed to be one if the longest days for us. Today was blood draw day, so Mommy and Daddy prepared the supplies necessary to access Delaney's Broviac and drew blood. Delaney has become very corporative in this process which makes it a little less stressful for Mommy and Daddy. The blood did not come out that easy today, sometimes it is positional, sometimes we need her to get up set to raise her pressure to push blood out. We tried to mover her arms, her head side to side, take a deep breath. None of which worked, so we had to agitate her, this made the blood come out. Then off to Walnut Creek to drop the blood off by 8 am. The oncologist has a STAT order on all of Delaney's blood draws, this means they are processed and results are seen with in less than 1 hour. It is important to see her blood counts, we will know if she needs a platelet transfusion, blood transfusion, and her white blood cell counts. Today the results showed that Delaney is severely neutropenic. Normal white blood cell counts are 5,000 - 15,000. Delaney's count is 100. Her risk for infection is extremely high. So today we had a movie day. Delaney rested as much as she could, and played with brother. Delaney's appetite was better than most days, this was nice to see. Delaney is trying to do more things on her own. She is trying to crawl, but Mommy and Daddy must still hold her up to go through the motions. As hard as it is to watch sometimes, we put that emotion aside and we are drawn to her motivation to try to crawl and smiling while trying, we are so proud of her. She has come so far and is so much more stronger. Delaney is asleep at a good time, ready to take on a busy week. Another injection to give Delaney, another day down. We love how fierce she is. Thanks for all the prayers, love and support. As always GO TEAM DELANEY!!

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

Sunday, November 3, 2013

Saturday Update

Most of you may not know but Delaney never had an opportunity to have her "First" hair cut, and Mommy and Daddy did not have an opportunity to see her first hair cut. Delaney's first hair cut was on the day of her brain surgery, the hair cut from that day was her hair from birth, this would have been a special moment for Mommy and Daddy. However, there was no question what needed to be done at all. As if brain surgery was not enough to deal with we asked the pediatric neurosurgeon team when they cut her hair that day if they could save it for us. And with out hesitation the said they would. And that day they did they placed Delaney's hair in plastic bag for us to take home and save. We know her hair will grow back and will have another chance to cut her hair. But as parents watching your child grow up it is about "firsts". First steps, first words, first smile. Firsts are bonding, enjoyable for a family. So today for Delaney little brother and Daddy shaved their heads ( what hair Daddy has left ) in support of Delaney, but also it is not just Delaney going through this alone, we are going through it together as a family. Here are some pictures of those moments today. Also if you pay close attention to Delaney she is finally able to wear her "CAPTAIN" Team Delaney shirt and in the back it says "and though I may be but LITTLE I am FIERCE" a special thanks to Uncle Travis and Aunt Lacey for having this shirt made for Delaney. Thank you for all the prayers, love and support. As always GO TEAM DELANEY!!!!

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

Friday, November 1, 2013

Halloween Day Update

Today started out early as usual, around 6am. It was a rough night for Mommy, waking up every few hours to stay on top of Delaney's antiemedics. Unfortunately, around 6:30am Delaney threw up. It is so hard to watch her get sick. But we comforted her and of course gave her oncologist a call to make sure we did not need to bring her back in. The vomiting is to be expected, but still never easy to watch. Delaney seemed to be in a good mood. Delaney and brother watched Monsters University while brother ate his breakfast. To our surprise, Delaney asked for some Cheerios and milk. She took a few good bites and was done. That is the most she has eaten in about 4 days. Next it was time to Heparin lock her Broviac and of course we could not get in to flush. 730am and already running into problems. We made some phone calls and were able to have our home health nurse come out to take a look, instead of driving out to Oakland Kaiser. Our home health nurse was able to come over within 30 minutes. When she arrived Delaney was asleep from all of the medication she has been getting to counteract the nausea. The nurse was able to use her professional experience, and techniques to get the lines to flush, not easy but she got it done. This is a huge relief for us, not only do we not have to take Delaney to the ER and expose her to germs that could get her sick from her blood counts dropping. She is able to stay at home, comfortable, with family, and not drive to the ER and stay in a room for hours waiting for the Broviac line to get unclotted. Delaney took a long nap, her body needs the rest. Chemotherapy is destroying not only bad cells but good healthy cells. This makes her sick and tire easy. While Delaney had a good long nap, Daddy ran some errands, and Mommy had snuck in some quality time with little Merlin. When Daddy got home Delaney was up in Mommy's arms headed back to her bed room to change her diaper. A few minutes went by, Mommy and Delaney had not come back out. So Daddy went and checked on them. Mommy was sitting on the floor, Delaney sitting in her lap, they were playing with hair bows. Mommy looked like she had been crying or was tearing, and so was Delaney. Daddy quickly asked what was wrong and Mommy explained that Delaney wanted to play with her hair bows, and began to try to put them in her hair as she had always done, but she could not get the bows to stay on her head. Delaney began to cry, she does not understand that her hair is gone and is falling out. Mommy with tears in her eyes could not explain to her 2 1/2 year old daughter in any way what was going on or in a way for her to understand. Delaney had a melt down, Mommy cried, Daddy cried as he walked down the hall, these are the moments that tear our hearts out and kick them across the floor. Fortunately Delaney has head bands and Mommy helped Delaney put bows on her head band. The just when we are at an emotional low, Delaney on her own accord, tries to walk, and is proud of herself. Many of you have seen the video. Delaney rested for the rest of the day and did not feel well enough to put her Sofia The First Dress costume on for Halloween. That is ok, we told her she could wear it when ever she wanted to. Trick or treaters came by and as they did Delaney wanted to be held by the window to watch everyone in their costumes and wave. This made her so happy. These are the are roller coaster of emotions that are experienced daily. Delaney always remains happy, and content with the simple things in life. She is relentless in her pursuit to keep it that way. Thank you for all the prayers, love, and support. As always.... GO TEAM DELANEY!!

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