Monday, December 30, 2013

Sunday Update...

The past two days have been some of the most demanding and taxing days for us all. It has taken some work for Mommy and Daddy adjusting Delaney's medication and medication schedule to help her nausea, as well as keeping her hydrated with pedialyte and formula. But the real work is in Delaney hands, she has done great getting rest, and allowing her body to work and rebuild itself. We finally feel as though Delaney now has the upper hand on her nausea and is staying hydrated as well. Delaney did not vomit last night or today and has been able to take in more liquid and formula. Delaney's home health nurse came by today to check on Delaney, everything looks good. Mommy and Daddy also did a Broviac dressing change today. Delaney's leg strength did get weak from the days during and following her hospital admission, but she again is gaining strength and coordination back hopefully to make up more ground on learning to walk again before she is admitted for cycle 5. Mommy and Daddy are happy to see that today Delaney has had the most energy in the past week. Tomorrow morning Delaney will have another blood draw to look at her counts, with a more than likely an appointment for blood and or platelets transfusion. The days leading up to today are stressful, depressing, and at times feels as though there is no end in sight, but a simple change in her health and energy can make all the difference. Thank you for all the prayers, love and support. As always... GO TEAM DELANEY!!

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

Friday, December 27, 2013

Thursday Update

Last night was by far one of the longer nights for us. Delaney went to sleep about 7pm and woke up around 9pm feeling a bit nauseous. We were able to get her back to sleep, but around 1am Delaney had her first episode of vomit. Daddy cleaned up while mommy comforted Delaney and tried to get her back to sleep, but again at 1:30am she vomited again. Daddy only got about 3 hours of sleep last night. We were able to get Delaney back to sleep close to 3am and from there she slept until about 5:30am. We hate to see her get sick plus we can't afford for her to lose weight. The dr said if she begins to lose weight or can't keep food down we may have to give her IV nutrition and/or hydration through her Broviac at home. Today was the first day Delaney really had no energy. It's not easy watching your baby feel sick all day long knowing there is nothing you can do for her. Majority of the day was spent napping and watching movies with the occasional playtime with brother. We drew labs at 6am and luckily her counts are still good enough that she will not need any transfusions tomorrow, but rather Monday. Delaney did not vomit for the rest of the day. She did not eat anything today on her own, so we tried as best we could to catch her up with NG tube feeds throughout the day. This was successful, but we would still like to see Delaney eating. The rest of the night was very mellow. Delaney was asleep by around 9:30pm and our nightly clean began. We are hoping as the days pass her nausea will subside. Thank you all for the love, prayers and support. GO TEAM DELANEY!!
"And though she be but LITTLE, she is FIERCE!"

Wednesday, December 25, 2013

Coming Home for Christmas Eve

Delaney did well with her treatment. She did not vomit overnight. However, her doses of chemotherapy were so great that she already had her first, of many, blood transfusions this morning. Her first platelet transfusion is already scheduled for Friday. We are excited to be headed home today!! We will get to spend Christmas at home, as a family. We hope everyone has a wonderful holiday with their loved ones! Merry Christmas! Thank you for all of the love, prayers and support! GO TEAM DELANEY! "And though she be but LITTLE, she is FIERCE!"

Tuesday, December 24, 2013

Monday Recap...

Today is day zero, a big day for Delaney she will receive her stem cells back for transplant at 1030am. Delaney slept good last night, and woke up at 4am, however she did vomit at 430am. This is always hard to start the day off. The worst of it was that Delany vomited on both of her blankets, so after cleaning her up we did not have another blanket she could snuggle with, so Mommy took the blankets and some other laundry down to another floor and was able to get the blankets washed and dried. It is added work, but it keeps Delany happy. Delaney was happy the rest if the morning. Today is a big day, it is transplant day, she will receive her stem cells back to rescue herself. For the nurse today before transplant there was 2 1/2 hours if preparation and pre medications. At Delaney's harvest a little more than a month ago they collected 58 million stem cells, that number is divide by four for the number of bags she will need, one after each transplant and 1 back up so 14.4 million per bag. Then once unthawed, half will die off, so she should receive 7 million stem cells, 7x the amount they calculate she would need, so UCSF said she should have a good rescue. Once the stem cells are given, via a large syringe on a syringe pump, over 30 minutes, vitals will be taken every 5-15 minutes, and diapers had to be changed every two hours. There is expected to be blood in her urine because of the cells that will die off are passed through Delaney's urine. There also is no chance of rejection if her cells because they are her own, and the body will recognize that. We are happy to say that Delaney did have a successful transplant and spent the rest of the day resting and playing with Mommy and Daddy. Delaney has done so well with her first of three transplants, she brought her fierce as she always does and kept it fierce all the way trough. We hope to be discharged on Christmas Eve! Thank you for all the prayers, love, and support. As always ... GO TEAM DELANEY!!!

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

Monday, December 23, 2013

Sunday Update....

Today, is day minus 1. Delaney has received all of her chemotherapy for this round. Tomorrow will be day zero, when she receives her stem cells back. Last night was very rough, Delaney went to bed early, and was restless all night and she was up at 330 am. Mommy and Daddy are exhausted to say the least. She was nauseas this morning and did vomit at 8am. She them napped for a couple of hours. Today is a rest day, her body has been through so much and will now receive stem cells back and will have to work hard to graft them back in to place to produce more cells for the body. Delaney finished her regiment of baths this afternoon, this was done because one if the chemotherapy drugs Thiotepa is excreted through the skin and can cause redness and sores in the skin folds, up to 24 hours after the chemotherapy is given. Thankfully Delaney did not have that problem. The day went by slow, but Mommy and Daddy came with activities for Delaney to do while she is in bed. Her favorites were a book of silly animal faces and her light brite. She had another Broviac dressing change today along with both caps being changed. Delaney does so well with these changes the nurses were impressed. Delaney went to sleep at a somewhat normal time tonight, 8:45pm. We are hoping she sleeps well, she will need some good rest for the big day tomorrow. Mommy and Daddy are very anxious for tomorrow. We don't really know what to expect. Thank you for all of the love, prayers and support! GO TEAM DELANEY!

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

Sunday, December 22, 2013

Saturday, Round 4 Day 2 Chemo

Delaney turned in early last night, 630 pm, Daddy slept right by her side, however her diapers must be changed every 2 hours or sooner, and she needed her third bath at 10 pm. Delaney slept well and did not vomit over night. Delaney woke up 445am happy and asking for Mommy, so Daddy and Mommy switched and Mommy cuddled with Delaney. Her anti nausea meds were on board and before we knew it chemotherapy was underway at 9am. Her chemotherapy treatment ended at 1pm, she did great and so far has taken the big doses in stride, and thankfully with no complications. Delaney had her first bath at 10am and snacked on some honeydew. Delaney's new thing is she likes candy canes, which Mommy bought the other day, to keep her tasting food and to keep food a fun idea, because Delaney does not necessarily enjoy eating. The Bone Marrow Doctor came to see how Delaney was doing and they said she was doing great, and that transplant to rescue herself is still set for 1030am Monday. Tomorrow Delaney will have a day of rest. She will need it; the chemotherapy has made her very tired and fatigued. Delaney has been asking to go home a lot, she really does miss her baby! The rest of the day was somewhat quiet. Due to the chemotherapy drug, Thiotepa. We again had to change Delaney's Broviac dressing. Delaney's nurse made it fun and let Delaney help her with the adhesive remover, which is great because we always try to include Delaney in her care, when we can. Delaney played the Palace Pets game on the iPad, watched a little tv, stamped and before we knew it, she was out by 5pm. We thought only for a nap, but it is now 8:30pm and she is still asleep. Mommy and Daddy are going to try to get in a little nap before we have to give her a bath at 10pm. We are so blessed to have such a strong and fierce baby girl. Thank you all for the love, prayers and support. As always.....GO TEAM DELANEY!

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

Round 4...Day 1 of Chemo at UCSF...

I was a restless night for Mommy and Daddy. Delaney slept well, and woke up in a great mood hugging and kissing Mommy and Daddy. Delaney had her anti nausea medications prior to her chemotherapy start at 9am. Chemotherapy was under way before we knew it. These rounds are more challenging, the doses of chemotherapy are very big, Delaney will need to bathe 3 times a day, to wash off any chemotherapy she will excrete, we need to try to get her to brush her teeth 4 times a day, and her Broviac dressing will need to be changed everyday. Delaney has been in a great mood all day, but she is wiped out and does not have much energy. We were able to speak with the Bone Marrow doctor and put a few of our worries aside. We have been worrying about the side effects of one of the chemotherapy drugs, Delaney will receive. She ate more today than she has in almost 4 months. It still was about the equivalent of 1/2 of a normal meal, but it was an improvement. Delaney is still very anxious about eating because she is hardwired that food is going to make her sick. This could take her a very long time to overcome. Since we are in the BMT unit brother is not able to come visit. It is very hard on all of us, but especially Delaney. She really needs brother to feel complete. We can't wait to get home and have our family back together for what we are hoping to be a few solid weeks before the start of round 5. Tomorrow will be the same regimen. A 2 hour drip of Carboplatin followed by another 2 hour drip of Thiotepa, 3 baths, 4 tooth brushings and a dressing change and hopefully a decent appetite. So far we have had a wonderful experience at UCSF. All of the staff has been more than accommodating. Transplant is scheduled for Monday morning at 10:30am. We are very nervous for this, but we are continuously reassured that Delaney will be great. It is going to be an early night for Team Delaney. She has been asleep since about 6:30pm, so Mommy and Daddy should at least get a nap in while we can. Thank you all for the love, prayers and support. GO TEAM DELANEY!

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

Friday, December 20, 2013

Thursday Night Recap..

Delaney started another chapter today. She continues her story at UCSF, for bone marrow transplant. The day began as usual, early, quick, and a few steps behind. Delaney was so happy today, it is so hard to see her doing so well and look so good just to know what will happen in the following days. The plan is for Delaney to be admitted at 11 am, so we were packed and ready to go by 8am. We headed out and no sooner than 20 minutes on the road we received a call that UCSF was not ready for Delaney we would have to wait until noon for a call for a time that she would be admitted this afternoon. Hurry up and wait. But UCSF had a busy night with admissions. We received the call around noon and was told that Delaney could be admitted at 4 pm. Delaney did great with the adjustment of time and just wanted to play with brother. It was more difficult leaving home this time because like we have said little brother is used to have his Mommy, Daddy and sister at home, and when we left, and for a majority of the afternoon he walked around the house holding aunt Rachael's finger asking for Mommy and Daddy. It is very tough in both ends, home and hospital. It has been quite a process getting settled, on admission Delaney has already has 2 x rays, blood draw, NG tube adjustment, and has started IV hydration. It was challenging getting Delaney settled in, she now is saying she wants to go home, this is new for Mommy and Daddy and hard to explain to Delaney. We will know the plan on Friday for chemotherapy and more of the plan in general but we will not know how things will go, it is the constant unknown that can wear Mommy and Daddy down, but we interact with Delaney and see her love and we just focus on her. She is fierce, game face is on, she wants to get home to brother on Christmas Eve, and put out cookies and milk out for Santa with him and open up presents Christmas morning. Thank you for all the prayers, love and support. As always.....GO TEAM DELANEY!!!!

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

Thursday, December 19, 2013

Heading to UCSF...

The past two days have been busy for Mommy and Daddy, preparing for UCSF, as well as spending as much time with Delaney and little Merlin before admission to the hospital. These have been some of Delaney's best and healthiest days since she became sick in August. Delaney was able to go for a car ride with brother and go look at Christmas light again they really enjoyed this. Delaney loves her little brother so much, she is going around the house saying, "my baby", that brother is her baby, this is so funny and heart warming to hear. Their bond has become so strong over the past 2 weeks. Delaney is doing better trying to eat, it is still very challenging to work with her on that area. There is a whole new set of fears with these rounds of chemotherapy coming up. But Delaney keeps Mommy and Daddy fierce and strong. We are learning with the kind of treatment that Delaney is receiving we have to take the good with the bad regardless of how we feel. The doses of chemotherapy she will receive will try and do its part to wipe out any thing that is left which is good. Delaney has made it to a huge mile stone, essentially the half way point. She has come so far, been through so much, and just by watching or hearing about she does has, taught or reminded many of us about what life is about. Thank you for all of the love, prayers and support. GO TEAM DELANEY!

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

Team Delaney Blood Drive Update

Team Delaney Blood Drive Important LOCATION CHANGE due to high demand. Date and Time stay the same. All appointments made via Red Cross website and 800 will not change in the system, we are just changing the venue.

The Church of Jesus Christ of Latter-Day Saints 1501 Hillcrest Ave, Livermore / Gymnasium Tuesday, December 31, 2013 10:00 a.m. - 4:00 p.m.

We are half full of spot so sign up quick to ensure your donation. Please help share this location change with anyone you have shared this with.

To schedule your appointment or for more information call 1-800-RED CROSS (1- 800-733-2767) or visit and enter sponsor code: DELANEY.

And though she be but LITTLE, she is FIERCE!

Team we have partnered with the American Red Cross to hold our 1st Team Delaney Blood Drive. Please come out and support Delaney and others like her in their need for blood donations. We are excited that we can help give back to the community who have donated in the past and have unknowingly allowed Delaney to get the blood she needs during chemotherapy...THANK YOU. Merlin, Janice, and Delaney really had no idea how much blood our Fierce Fighter would use and will continue to use going through chemotherapy. Family, friends, and the community have offered to help support by donating blood and here is our chance to once again show everyone what a great community we live in. Please help spread the word about this blood drive. Please sign up early and book your time to donate blood because we only have 104 slots available and if it has been like the last events we have had you guys will make this a great event as well. Please follow the directions above on how to donate.

If you have any other questions regarding this event please contact me (Uncle Travis at 925-337-3371 or Love, Uncle Travis.

Wednesday, December 18, 2013

Monday Update

Today was full of anticipation, Delaney's blood counts did not rise as we has hoped. So we were packed and ready to go, but when we got Delaney's counts they were just shy of where they needed to be to be admitted. Delaney is neutropenic again. So Delaney must remain at home for a couple more days. After talking to the bone marrow transplant team at UCSF, the said that regardless of Delaney's counts on Thursday she will be admitted then. It is quite an emotional high and low to be ready and then wait. As well as to try and be mentally prepared for what Delaney will be going through, then have to wait in anticipation and anxiety until Thursday. However the transplant team said that this is very common and it is why each chemotherapy cycle can last up to six weeks because it will take time for Delaney's bone marrow to recover. As much as we don't want to go this, we are eager to start so we can help Delaney through this treatment. Delaney remains very happy and in good spirits considering. She is trying to become more independent, taking a few steps on her own with out warning, exciting but scary because she can easily hurt herself, if she were to fall. This is especially true if her platelets are low, because she will bruise easily or her blood could not clot. None the less Delaney is making the most of this time at home, she and little Merlin are establishing a very strong bond hugging and playing with each other all the time, they are so happy together. Delaney's appetite is still poor, we still are supplementing her on a daily basis with formula through her feeding tube. It does seem as though she is drinking more fluids on her own. Delaney's goals for the next couple days are simple, stay happy, healthy as possible, try to eat more food, and most important enjoy time with her little brother and family. Thank you for all the prayers, love and support. As always..... GO TEAM DELANEY!

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

Sunday, December 15, 2013

Great Sunday News!!!!

Delaney lumbar puncture came back today and its NEGATIVE…ALL CLEAR. This is just another victory in this very long battle ahead and we are very thankful to get these results today! Today the family has been very busy preparing for admission to UCSF tomorrow if Delaney blood counts are up to begin round 4 of chemotherapy. Daddy will take a blood draw tomorrow (Monday) morning at 6:30am and head to Walnut Creek. If blood counts are up Delaney will then get admitted a few hours later at 11am.

Thanks for your prayers, support, and love. Go Team Delaney

“And though she be but LITTLE, she is FIERCE!”

Saturday, December 14, 2013

Fierce Friday Update...

As Delaney ends her busy week full of tests and procedures on Fierce Friday, Mommy and Daddy cannot help but to look back at this week and see how well Delaney has handled all that was thrown her way. Delaney had an appointment every single day. Delaney this week had an MRI with sedation, renogram, hearing test, echo cardio gram, lumbar puncture with sedation, 3 blood draws, and an appointment with the bone marrow transplant doctor. She has handled each appointment with smiles and confidence, she did fuss from time to time but always kept fierce. All of the tests on her vital organs look good and have not been damaged from the big aggressive doses of chemotherapy she has received. We have yet to receive the results from the lumbar puncture yesterday, there is much anxiety and stress, and it is heavy on the minds of Mommy and Daddy. Grandpa was able to come to UCSF with Delaney today and she loved it, she liked to have him in the room with her and hold her. As we met with the bone marrow transplant doctor today at UCSF we were able to have many questions answered. Delaney will have 3 more rounds of chemotherapy at UCSF, doses big enough that will wipe out her bone marrow, from there she will be given back her own stem cells harvested last month, back into her blood stream. From there the stem cells will find their way back to the bone marrow and graft themselves back into place and start to produce all of the cells her body needs over again. This process can take up to 4 weeks for each cycle. She can also be expected to be at UCSF 2 times per week receiving a transfusion of blood and or platelets. Delaney as of now is to be admitted on Monday. From the blood draw UCSF did today Delaney's counts dropped again, possibly moving her admission day back later next week, Delaney will have the weekend to hopefully get her counts back up and daddy will have to do a blood draw early Monday, so we can see her counts and if they will be high enough for her to be admitted later that day. As with keeping to our tradition of pizza and cookie night on Fridays, we were able to do so, but Delaney has been asleep since 5 pm. We hope she will be up soon to try and eat, but we know her body needs rest. We know Delaney is looking forward to a couple of uninterrupted days at home playing with brother, and simply trying to enjoy her time as a happy 2 1/2 year old. Thank you for all of your prayers, love and support. As always...... GO TEAM DELANEY!!!!!

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

Friday, December 13, 2013

Day 3 and 4 of tests update:

Well, Wednesday Delaney had several appointments. An audiology appointment to see if there has been any damage to her hearing since the start of chemotherapy. We were pleased to find out her hearing is still in great shape. The audiologist says we should be able to see negative chemotherapy effects by now, so we are hoping hearing won't be an issue. Next she had an echocardiogram. Luckily, she was asleep for the whole test. The technician performed the last 2 echo's on Delaney and feels her heart is functioning great, but we are still waiting for those results to come back from the doctor. Lastly Delaney had her NG tube changed from her left side to her right side. This is always uncomfortable for Delaney and as always, Daddy was there to comfort her and help the nurses out. Mommy likes to come to the rescue once the procedure is done. On our way home we had to stop at Kaiser Livermore for a quick X-ray to confirm Ng tube placement. If the tube is not in the stomach it could cause some reflux issues. We were able to confirm with Delaney's NG tube that we had correct placement and it was ok to use the tube. Once home it was play time. These days Delaney enjoys playing much more than watching movies. This is a nice change for all of us. And of course her favorite toy is brother! A daily battle has been getting Delaney to wear her eye patch. She needs to strengthen the muscles in her left eye which were damaged due to pressure from her tumor on the eye. We have a neighborhood cat who likes to climb our fence, so we have made a game of it. Delaney now puts her patch on and is determined to find that kitty because the kitty only comes out when her patch is on . She had a pretty late night, which was stressful because Delaney had to be NPO (no food) starting at 2am. This made for a huge caloric set back for today. As you can imagine all of these appointments are very stressful for Delaney. Someone is alway poking or prodding at her. This morning Daddy had to do a blood draw at 630 am and drive the blood to Walnut Creek for processing. There is a chance she may need a blood transfusion today as well, only the counts will tell. Fortunately her hemoglobin levels rose in just a few days to a safe range. Today Delaney had a lumbar puncture. The doctors will have her cerebral spinal fluid tested for tumor cells. The results of this test are also very important. We arrived at 10am and weren't taken back until a little after 12pm. Delaney's oncologist performed the LP and assured us afterward that she did great and we could see her shortly. We also said our good byes to him for a while since we will be transferring care to UCSF starting next week. Delaney slept for almost another 1.5 hours before we could take her home. She had to remain laying flat for 30 minutes to 1 hour to prevent any headache or leakage from the lumbar puncture. We headed home and spent the remainder of the day playing with brother and Grandma. We were able to get Delaney to eat more today than she has eaten since before her operation. To our relief she kept it all down and was pretty happy for the rest if of the day. Delaney has kept it Fierce everyday, all day. She will have another blood draw tomorrow at UCSF, as well as a consultation and consent appointment. We also found out late tonight Delaney's white blood cell counts dropped after stabilizing and she is again neutropenic and prone to infection, and she cannot get admitted to UCSF until she is no longer neutropenic. Thank you for all the prayers, love and support. As always ..... GO TEAM DELANEY!!!

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

Tuesday, December 10, 2013

Great Monday Update!!!!!

It will be a short update for today! We are so incredibly excited to share that Delaney's MRI from today came back all clear! There were no markers on her brain or spine. This is a huge milestone for our sweet little angel yet fierce fighter and a huge relief for Mommy and Daddy!! Delaney still has several important tests this week one of which is a lumbar puncture. This will test to see if there are any tumor cells in her cerebral spinal fluid. This is one more test to be fearful of. One step at a time. We have so much to be thankful for!

We can't thank everyone enough for the love, prayers and support! GO TEAM DELANEY!!

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

Monday, December 9, 2013

Sunday Update ...

Today was a great day for Delaney, she continues to try to do most things on her own. Delaney was up early again just before 4 am ready to go. Delaney does not have much of an appetite, however she is trying more foods a little at a time. As everyday for Delaney, it is centered around playing with brother, they both simply just love being with one another. As Delaney wants to do more in her own, we are encouraging her to walk to where she wants to go, supported of course, to continue to build up leg strength, balance and coordination. She is at the point where she can hold just a finger one in each of her hands and walk with good purposeful movements. This is more than exciting for Mommy and Daddy to watch. Delaney has been feeling good, and her counts are up, so we put her in the car, and took her around some neighborhoods in town to look at the Christmas lights from the car, it is still to risky to chance her getting sick. She really enjoyed that a lot. But the goal for the weekend was simple for Delaney it is to spend time at home with family, and enjoy it, for we know that this is going to be a busy and stressful week for Delaney and the family. We will have to cut Delaney's feeds tonight at midnight, because she will have a MRI tomorrow, that she will have to be sedated for, this is will be the first MRI since the start of chemotherapy. Delaney will also have a blood draw to test her liver function and check her blood counts. Tomorrow holds too many emotions for Mommy and Daddy to explain. Things remain positive, and Delaney is in good spirits. Everyone's little FIERCE FIGHTER is resting, preparing to take the week on, one day at a time. Our family is so thankful for all the great medical care, positive energy, prayers, love and support. We believe everything together has helped Delaney and will continue to help all of us through this difficult time. GO TEAM DELANEY!

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

Saturday, December 7, 2013

Friday and Saturday Update

Saturday Afternoon Update...

After yesterday's dentist appointment and blood draw, we were relived that Delaney did not need a transfusion and we could stay home, because we know this up coming week is extremely busy and stressful. Delaney's attitude continues to improve and she is looking better and getting healthy again. This is all we could ask for. Delaney and the family will do everything we can to enjoy this time in the coming week between appointments, before Delaney is admitted to UCSF. Yesterday revolved around playing, playing, and more playing, and of course with brother Merlin. Delaney is working hard and trying to stand up on her own, she is getting close. Since delaney is not neutropenic for now her diet is not as restrictive and can now have yogurt and fruit again for example. Delaney still essentially is tasting and lightly snacking on food, and Mommy and Daddy still must supplement her diet through her feeding tube. As you all know Fridays are not only FIERCE FRIDAYS, but are also pizza and cookie night for us. Delaney ate almost 1/2 piece of pizza. We were so happy! She quickly lost interest as she does with most foods, but she kept it down and that is a huge step! We have not been able to do regular update since we have been pretty much wiped out emotionally, mentally and physically. Once the kids are asleep it takes Mommy and Daddy roughly 1 1/2 hours to get everything ready for the next day. Some of our nightly tasks include: washing 40+ syringes used to feed/medicate Delaney via NG tube, sterile cap changes on her Broviac, dressing and re-dressing Delaney's NG TUBE, hooking up Delaney's nightly feeds, filling extra syringes of pedialyte and formula for the following day and taking 5 minutes to breathe. We will do whatever it takes. Thank you for all the prayers, love and support. As always........GO TEAM DELANEY!!!!

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


Sorry for the delay but the family has had a very busy scheduling apportionments and rescheduling appoints. Delaney had a radio oncology appointment yesterday to discuss options for treatment in future. Delaney is getting better the past few days. Her white blood cell counts are back up. She is no longer neutropenic but here platelets are as low as they can be but we are hoping those climb so she can go without a transfusion. Blood was drawn at 6:30AM this morning to find out the results of platelets. Since her white blood cells are up we had to take advantage of that and go to pediatric dentist at 7:30AM today. The office opened early to avoid contact with other, which was a relief for us. She needed a prescription just to go to dentist to find out any possible infections before she begins round 4 of chemo. Delaney was required to take a prescription 1 hour before in order to just go out. We went to dentist to see if any infections or cavities because if there were, round 4 would have been delayed. Last three rounds are called consolidation rounds and very difficult so she cant have any infections because they would become worse. Thankfully she did not have any signs of cavities or infections. Her blood work came back soon after and her platelets were up so we were able to cancel the standing 11:30AM appointment we had scheduled today. She has been so strong lately and on this FIERCE FRIDAY she showed us shes here for the fight. Thank you for your love, support, and prayers. GO TEAM DELANEY!

“And though she be but LITTLE, she is FIERCE!”

Thursday, December 5, 2013

Wednesday Update

Wednesday Update

As always, we were up at 4am and ready to go! Delaney doesn't like to sleep in much these days. Last night we cut off her food at around 1:30am and to our surprise Delaney woke up happy and full of energy. We were able to... supplement her throughout the day via her NG tube to make up for what she did not get overnight. We had a successful day of no vomiting. Delaney did not eat anything today which makes us upset, but Delaney was full of energy all day! Brother plays such an important role in her rehab at home. It is heartwarming to see them interact with each other. Delaney continues to amaze us everyday! She is getting much stronger and is almost able to stand up with little to no help. She can't hold herself up yet, but we are hoping that will come with time. We finalized all of Delaney's appointments for next week. We will be traveling to kaiser Oakland M-Th of next week and to UCSF on Friday of next week. No break for our fierce little fighter. Tomorrow is an appointment with this radiation oncologist at kaiser Oakland. She will evaluate Delaney and answer any questions we have. We are meeting with her just in case Delaney does end up needing radiation. We are very anxious about this meeting because some of the long term side effects of radiation are frightening. Thank you all for the love, prayers and support. GO TEAM DELANEY!!

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

Wednesday, December 4, 2013

Tuesday Update...

Another early morning for Delaney. She was up at 4am and that means so was the rest of the house. Unfortunately, again, Delaney threw up some of her feeds. So, now we need to figure out how to manage this. We may have to ...start cutting her food at about 2 am and try to make up the calories in bolus feeds throughout the day or hook her up to the feeding pump at nap time. Either way we can't afford for her to lose any weight. Today marks the last day of chemotherapy for round 3! We are almost half way! With the completion of the tests next week and results given, this will mark the true half way point. She will have an MRI, renogram, audiology test, echo cardio gram, a lumbar puncture, and dentist appointment. All to asses if there is any damage to her organs from the chemotherapy and also to see if any tumor has come back. We are very anxious for the results. After speaking to the BMT (bone marrow transplant) at UCSF, it looks like we may be admitted on 12/16 to start round 4 of chemotherapy at UCSF. We learned today that these rounds could last up to 6 weeks each. That is a lot longer than we had expected, but Delaney is fierce, Mommy and Daddy will be right by her side, and Team Delaney behind us. Things have been busy setting up the appointments for next week as you could imagine it is a scheduling nightmare. We are reordering more medical supplies, and picking up new medication in preparation for UCSF. Delaney had a good day yesterday, and back to her happy go lucky self. Although she still cannot walk, or stand, she is crawling. She gets stronger everyday. Thank you for all the prayers, love, and support. As always.... GO TEAM DEALNEY!!!

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

Tuesday, December 3, 2013

Monday Recap

Today, again started out at about 3am. We think Delaney is waking up full and uncomfortable from her overnight feeds. We are hoping she will eat on her own soon so we can cut back on the NG tube feeds. Unfortunately, this morning she did throw up. Fortunately, this did not have a negative effect of Delaney's mood. She was her usual happy self throughout the day! We did our Monday morning blood draw and Daddy drove out to Walnut Creek to drop it off. We got Delaney's counts back and are relieved to know her counts are on the rise. She is still severely neutropenic. Her ANC is only 230. Her ANC needs to be greater 1000 to not be considered neutropenic. Delaney's days are fun, and enjoyable at home but, she remains inside the house with no visitors. This is a precaution to give Delaney the best chance at not getting sick and recovering quickly. She is doing great considering her set backs. It makes Mommy and Daddy happy beyond words to see Delaney feel better, act herself, and not be held back by her challenges. We only get to have Delaney feel better for a few days or at the most 1 week at a time, before chemotherapy starts, and makes her very sick. It is difficult to watch your child live in this constant swing from healthy to very sick. But Delaney lives it daily and she does it with such grace and fierceness. The rest of the day was relaxing, and low key, as she builds up her strength and repairs her body. Delaney was asleep by around 830, then it was time for Mommy and Daddy to do a cap change on her lumen (which is done every 7 days), administer her nightly GCSF injection, start her feeds, put her foot braces on and administer medications. We hope she sleeps soundly tonight. Thank you for all the prayers, love and support. As always .....GO TEAM DELANEY!!!

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

Monday, December 2, 2013

Sunday Recap

Delaney's schedule has been so erratic, it is hard to keep up. Last night she was very restless and she was up before 5 am. Starting this morning we worked on tapering her medications down to see how she would tolerate food and liquids through out the day. Delaney did great she did not require any nausea medication through out the day. However, we are still hydrating and feeding Delaney through her feeding tube. Grandma and Grandpa were at the house all day, we got Delaney and everyone bundled up to go for a little walk around the block, Delaney really enjoyed the fresh air and bright beautiful day. Although it was short walk 15-20 minutes, none the less she was outside. Before Delaney's current prognosis she loved going on walks every chance she could get. Delaney also had a visit from her home physical therapist, he came by and assessed Delaney's progress for an hour or so. He said Delaney is doing excellent. However, the main goal for the day was to get a Christmas tree and out it up in the house. We want to get it up as soon as possible because it it very likely we will be in patient over the week of Christmas. So we want to give her the most Christmas as possible. Grandpa even put up lights on Thanksgiving day, and ever since Delaney and little Merlin go outside at night and look at the lights together. This year Delaney topped the tree off with a lighted star, she was so excited, and proud. When she walks into the room she points at the star and reminds us who put it up. Delaney stayed up a little bit later tonight, we hope she will sleep better and longer. She is getting stronger and doing better everyday, our goal is to help her get as strong and healthy before her admission to UCSF. Thank you for all the prayers, love, and support. As always....GO TEAM DELANEY!!!

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

Sunday, December 1, 2013

Friday Update

Last night Delaney had other plans than sleeping she was up at 1230 am. Mommy and Daddy took turns staying up with Delaney. It was a long night. The night rolled into an early morning admission to Oakland Kaiser for blood and platelets. Delaney's blood counts are very low her white blood count is zero, her red blood cells and platelets low enough that she gets tired very quick and pulling a band aide off of her skin will cause her to bruise. Delaney received platelets over one hour and the blood was transfused over 3 hours. She does receive medication prior to blood and platelets, Tylenol and Benadryl, this is to prevent a reaction from either. Which she has had a reaction before. Victoria, one of Delaney's nurses from the PICU continues to remain close to Delaney even stopping by on her day off to visit. Delaney napped for a little while, while receiving the transfusions. She remained happy for the most part but we have noticed that she does become very irritable during transfusions, so as expected there were ups and downs the remainder of the day. Usually receiving blood and platelets will wipe Delaney out, and that's what happens she was very tired when we got home, and she was even nauseous, and dry heaved and spit up. But she managed to stay awake to see brother, Grandma, and Grandpa, we could tell this is always the highlight if her day. Grandpa took time to put Christmas lights up on the house yesterday, and Delaney loves to go out at night, in front if the house, for a few moments to look at the lights. After she went outside to look at the Christmas lights on the house Delaney fell asleep, on the couch in her favorite spot. And, as always, after Delaney falls asleep mommy and daddy scramble to spend a few minutes of one-on-one time with baby Merlin, wash syringes and get things ready to do all over again tomorrow. Thank you again for all of the love, prayers and support. GO TEAM DELANEY!

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

Friday, November 29, 2013



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


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...


"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.


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