Friday, February 28, 2014

Day 2 Admitted in Oakland.....

Today has yet again been another busy day for Delaney and the family. Mommy, Daddy, and Oakland pedicatrics have been busy around the clock with Delaney's care. With a continued focus on her care Delaney was able to supress her temperature and drop it below the 100.4 mark, which is the critical level the doctors are keeping an eye on.......but then again we are talking about Delaney on FIERCE FRIDAY and we knew she was up for a fight with the Team behind her! Delaney is currently on 13 different medication, of which 7 are antibiotics to fight off an infection, especially on her central line and because she is neutropenic and has no defense of her own. Delaney was in some pain last night due to the mucositis, which is getting better with pain meds and magic mouth wash. The doctors took a culture sample yesterday and we got the 24 hour results back, which were negative with no infection and they will also look at the 48 hour results tomorrow. Delaney mood is improving since she has been admitted but her counts are low and in the last 12 hours she has had 2 platelet transfusions. The doctors want to be cautious before sending Delaney back home, so it looks like we will be here for a few more days until she gets her counts back up and is healthier to return home.

Thanks you for your love, support, and prayers.

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

Admitted to Oakland...

Today, has been a very hard and stressful day for Delaney, Mommy, Daddy, and brother. The night was hard and Delaney woke up with a fever, which we were trying so hard to avoid. Since she is neutropenic she has no way to fight off any infection. We contacted the doctors and were told to bring her in right away. Since she's a BMT patient a fever to watch for on her is 100.4, she had 100.7. We grabbed our things, Delaney said "bye brother," and we got Delaney to Oakland where she was admitted to the pediatric floor. Delaney did cultures and she was started her on 4 different antibiotics for fear of a central line infection. Delaney has fought so hard during these 6 rounds of chemo without a fever until today so it has been very hard on Mommy, and Daddy to see her in more discomfort. Delaney is a fighter and we know she will kick this fever away but in the meantime the doctors want her admitted for at least another day or two so she can be closely monitored. Thank you for your prayers, support, and love.

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

Thursday, February 27, 2014

Long past two days...

Delaney is still fiercely fighting off cycle 6 of chemotherapy, she is working very hard to recover. Yesterday and today have been very difficult to say the least. Things are very rough and hard at home for Delaney, Mommy, and Daddy as we take each day literally hour by hour. Yesterday, Delaney had her 2nd blood draw for the week, and her blood counts came back, she remains severely neutropenic, and her platelets are holding after two transfusions in four days. Yesterday, Delaney was still nauseous. Mommy and Daddy noticed that she was holding saliva in her mouth, not swallowing or drinking. This threw up a red flag and immediately we were on the phone with the BMT doctors at UCSF. Mommy and Daddy looked in Delaney's mouth and saw that the soft tissue in Delaney's mouth was turning white, and we could see she was in discomfort. To us it looked like she was getting mucositis. How we understand it is the soft tissue in Delaney's mouth or the mucous linings are sloughing off, a side effect of the chemotherapy she is receiving. We were told she may get this once she started chemotherapy however she did not get this until her last round of chemotherapy. Delaney had an appointment yesterday afternoon at UCSF to check her mouth and the BMT doctor said that it was the early stages of mucositis. There is nothing that can be given, it must run its course. When her counts start to recover is when the mucasitis will start to heal this could be 5-7 days. Only pain meds can be given, to curb the pain. It was one thing to see Delaney sick but now sick and in pain it is very hard for Mommy and Daddy both. Today Delaney had her third blood draw and her pain was no longer tolerable, so Mommy called the BMT doctor for them to prescribe pain meds and oxycodoen has been given to Delaney to fight the pain. Mucositis only makes things more difficult to manage, she will not swallow because it hurts so in turn she ends up gagging on saliva and vomiting. Our fierce fighter's plate is overflowing, she must contend with mucositis, vomiting, diarrhea, and neutropenia all at the same time. Just to try and manage it all Mommy and Daddy have been up the past two nights since 1 am helping Delaney. Delaney also had a visit from her home health nurse to see her progress, Delaney looks good but she is in much discomfort, to the point where she will not open her mouth. The days are long, demanding, stressful, and exhausting, but one look at Delaney and we find all the motivation we need. Thank you for all the prayers, love and support. As always....... GO TEAM DELANEY!!!!

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

Tuesday, February 25, 2014

Busy day at UCSF with transfusion....

It has been a long few days for Delaney. She has been fiercely pushing through the effects of cycle 6's chemotherapy, and doing a little better each day. That's the fierce fighter we all know. It was a vomit free day today. This morning Delaney had a blood draw at 545 am so we could keep a close eye on her and her counts. The blood was in at 7 am and we received her blood counts by 845 am. Given the results, Delaney is severely neutropenic, she is at rock bottom, her ANC is 7, her hemoglobin is holding strong, but her platelets are low again, they are at 25. She was just transfused with platelets on Friday and by looking at her counts we know she will need platelets again today. We were in touch with UCSF and by 9 am and told they had a room ready for Delaney to receive platelets, and it was off to UCSF by 930 am. Things happen and evolve very quickly, Delaney, Mommy and Daddy must be ready at a moments notice to get things moving and handled for Delaney's health. Delaney was greeted with much love and smiles at UCSF on 7Long, it made us all feel good. Once there Delaney started to get a bloody nose, a sign that her platelets are low. We were where she needed to be. Next Delaney received her platelets, got both caps changed on her Broviac and a Broviac dressing change. She did great job, taking it all in stride, even the bloody nose, we just cleaned it up and she went back playing with her iPad as if nothing even happened. We are hoping and anticipating she will be on the up swing this next week or so. She will start her nightly shots of GCSF tomorrow and her stem cells are continuing to graft themselves back into her bone marrow. Back at home Delaney took it easy, and had her bursts of energy, playing with brother, Mommy, Daddy, and Grandma. On Thursday she will have another blood draw to watch her counts, and an appointment with her neuro oncologist. Delaney is as fierce as always, she never stops working to get better, because she has brother to play with, and missed time with her friends and family she has got to make up for. Thank you for all the prayers, love and support. As always.... GO TEAM DELANEY!!

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

Sunday, February 23, 2014

Saturday Update...

Team, a little shorter of an update tonight. The past two days have been very challenging for Delaney and family but they know the team is behind them....... Today's goals were simple yet demanding, keep Delaney hydrated, try to keep nausea subsided and keep her comfortable and happy. It was a better day, Delaney only vomited once. On the other hand it was oblivious she was very sick and nauseous and that coincided with her energy level. She would have little bursts of energy and then drop right back down, where she was wiped out. Right out of chemotherapy the medication, formula, and liquid schedule is extremely demanding at times and for long stretches she is getting something down her feeding tube every 30 minutes or so. Grandpa was able to come over for the whole day and got to spend time with Delaney, and she enjoyed it. Delaney went to bed early and for now is resting well. Everyone is exhausted, and looking for some much needed rest, ready to take on the challenges of tomorrow. Thank you for all the prayers love and support. As always....GO TEAM DELANEY!!!!!

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

Friday, February 21, 2014

Back at Home...

The day of discharge for Delaney's last chemotherapy treatment was very exciting and emotional for us all, and as you could tell Delaney was very happy. However, the BMT doctors explained it will take at least 3 months ...or longer for Delaney to fully recover from her chemotherapy treatments. Delaney, Mommy, and Daddy are still in the thick of it all. Delaney's body and counts are reaching rock bottom once again. Before Delaney was discharged on Wednesday she needed blood overnight, her hemoglobin counts were dropping. Delaney will have her follow up MRI scans the week of March 10th and lumbar puncture the following week. It was a hectic day yesterday keeping up with the medication schedule and getting adjusted to being back at home. Delaney did well over night. Today Delaney's home health nurse came by to get a baseline assessment on her, so we can continue to watch her progress through this chemotherapy cycle. In the early afternoon Delaney vomited, and as suddenly as she vomited, Mommy was by her side and quickly noticed that her feeding tube essentially shot right out her nose, it was too much of a risk to push back in so Daddy pulled the feeding tube out. This can turn into a big problem considering Delaney takes almost nothing by mouth, most importantly medication and formula. At this time Delaney was due for 3 anti nausea medications within 2 hours and one immediately. Our only choice was to try and coax Delaney into taking the medication by mouth from a syringe until we could place another tube. Delaney has essentially not taken any medication by mouth for over 5 months, it would be long shot. To our surprise and disbelief Mommy and Grandma were able to get Delaney to take the medication by mouth, Delaney did not hesitate, this saves herself from getting sick quickly. The home health nurse came back again and helped place a new feeding tube, to much of Delaney's displeasure, and then it was off to Livermore Kaiser for another x-ray. It was placed good and 1 1/2 hours later could use it. Delaney has another blood draw tomorrow morning at 545 am and has an appointment for platelets and or blood at 11 am. Delaney is very happy to be home with brother and in great spirits. It will be another busy day tomorrow. Thank you for all the prayers, love and support. As always... GO TEAM DELANEY!!!!

We are truly grateful, and humbled by the support our 2 1/2 year old daughter has received, again thank you.

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

Thank You and Goodbye 7 Long!!

You can see Delaney's video celebration leaving UCSF on FB. You do not need an account to view. Just copy and paste link

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

https://www.facebook.com/pages/Team-Delaney-Home-Page/219289764902599#!/photo.php?v=270809233083985&set=vb.219289764902599&type=2&theater

Tuesday, February 18, 2014

Tuesday Update....

Delaney knows how to stay fierce, she was able to keep the temperature that was creeping up at bay! Mommy, Daddy, nurses and the doctors were preparing for her to spike a temperature, she was that close. She continues to amaze us, we don't know how she does it. Delaney has done well with her nausea, but last night just before bed, Delaney vomited. If took her a little while to fall asleep afterwards, but eventually she did. She slept better through the night, and in the morning wanted some water and unfortunately that too, she vomited. After she was finished, and we calmed her down she was in a great mood, she was very happy, playing with toys and sticker books. Transplant of her own stem cells would be at 11am and her pre-medications for the transplant began around 9am. The volume of stem cells she will receive is around 30ml, roughly 1 ounce, but there is 7 million stem cells in her rescue. Sometimes little things make big things happen. And again we celebrate yet another birthday today for Delaney, for if it were not for her stem cells she would not recover from the chemotherapy she has received. Transplant started on time and the cells were transfused over 20 minutes, vitals were taken every five minutes, to keep a very close eye on her. Her rescue went very well, there were no complications, another small victory, but small victories add up to win the battle. It will take 2-3 weeks for her stem cells to graft back into her bone marrow. Delaney's blood counts have dropped and she is scheduled for yet another blood transfusion tonight at 12am. Delaney has been wiped out for most of the day with the constant barrage of medications, antibiotics, and her transfusion, things can take a toll. Delaney is still not eating on her own so formula through her NG tube is an hourly task, she does however try some foods and drinks some milk. Tomorrow, is an exciting day, discharge day. Pending nothing comes up that would keep Delaney in the hospital. 7 Long at UCSF has a special end of treatment tradition that will be worth recording tomorrow. We are all very excited. Delaney knows little brother and her family are coming to watch and walk with her out of the hospital. Delaney has endured 6 cycles of chemotherapy, 3 of which required stem cell rescue. A total of 21 days of chemotherapy. Delaney's story may not have such a happy beginning, but it is about the rest of her story, who we have all watched her become. She has handled such a life altering experience with such GRACE and of course ........FIERCENESS!

We have learned so much more about life as a family, but we must not be too concerned about what was and what will be........There is a saying: yesterday is history, tomorrow is a mystery, but today is a gift. That is why it is called the "present." Thank you for all the prayers, love and support.... As always.... GO TEAM DELANEY!

Thank you to the nurses, doctors and everyone at UCSF on 7 Long!

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

Monday Update



Delaney's last day of chemotherapy went as expected. She was in good spirits. It is still a challenge to keep her entertained and happy considering she must stay in her hospital bed until she is discharged, there is only so much you can do. It was a rough night last night, Delaney did vomit around 330am and was up for an hour or so afterwards, and then she was up at 6am to start her day.

Today is her rest day, to allow the chemotherapy to do its job. This is when the real work and management of her health begins, now and over the next 4-6 weeks until she recovers. Delaney has been in a great mood all day and even did some dancing with her nurse, while she was in her bed. Delaney is a little nauseous, as expected, but a real concern arose when in the late afternoon her temperature started to rise and crept up in to the 100 degrees. The standard for a fever is 100.4 Delaney was really close and to this hour remains close to having a fever. We hope she can keep the fever away through out the night. If she has a fever, her blood will be drawn and antibiotics will be given quickly to fight off any possible infection. It can be expected to get a fever with this aggressive chemotherapy, epically when Delaney's counts start to drop. It has been and will be a long and stressful night. Tomorrow, is a big day, Delaney will save herself for the 3rd time, with her own stem cells. Her stem cell transplant will be tomorrow at 11 am. Thank you for all the prayers, love and support. As always... GO TEAM DELANEY!!!!

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

Team Delaney Blood Drive

Team, Due to the huge success of our first blood drive Team Delaney has teamed up once again with the American Red Cross. Together you guys helped donate 116 pints of blood which is over 4 times the normal amount in a one day event. That blood helped hundreds of lives like Delaney, who her self has experienced numerous blood transfusion, and will continue to as she recovers from chemotherapy.

This time the Red Cross is doubling their resources and time to make wait times shorter. We truly appreciate everyone that donated this past New Years Eve and was patient as we experienced such a huge demand on the first event. This next event will take place on a Friday and Saturday to give people more options with your work and life schedules. If you donated last go around you are once again eligible to donate. If you were not able due to the wait time or scheduling, this is your chance. There are 79 slots on each day and the details are as follows:

Team Delaney Blood Drive

Purple Orchid Wine Country Resort and Spa
4549 Cross Raod, Livermore, CA 94550
Friday March 14th Noon - 6pm
Saturday March 15th 10AM - 4pm


To schedule your appointment so you will not have to wait please call 1-800-RED CROSS (1- 800-733-2767) or visit redcrossblood.org and enter sponsor code: DELANEY

And though she be but LITTLE, she is FIERCE!

If you have any questions or trouble signing up please contact Uncle Travis at 925-337-3371 or travisbnewton@yahoo.com

Sunday, February 16, 2014

Chemotherapy Complete

In Delaney's story today she finished writing the chapter on her chemotherapy treatment. Although she reached a huge milestone today and is done with chemotherapy, her story is not yet over. In the next few weeks Delaney will still need blood and platelet transfusions. We will have to watch out for fevers and signs of infection. And then there will be the follow up MRI and lumbar punctures to determine if her tumor is still 100% gone and if any follow up treatment is necessary. We appreciate the continued prayers, love, support and positive energy. Our family cannot thank you enough! As always.....GO TEAM DELANEY!!

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

Round 6 Day 1 Update...

Delaney was admitted to UCSF, yesterday, Valentines day, also FIERCE FRIDAY, for Delaney and Team Delaney. Delaney was admitted at 1pm at UCSF and then went up to 7 Long, as this is what the BMT/Oncology floor is called. There, Delaney was greeted with smiles and well wishes form nurses and doctors alike. This will be her last of her 6 cycles of Chemotherapy. 3 cycles at Oakland Kaiser and 3 at UCSF (with stem cell transplant) . Once Delaney checked in at the nurses station, it was back down to the 3rd floor for a chest X-ray, to check placement of her Broviac and NG tube. Following the x-ray it was back up to 7 Long, to get ready for the next 6 arduous days. Before Mommy and Daddy can go in her room a 2 minute scrub from the elbows down to the fingers must be completed with a sponge. Delaney then could be taken in the room where she would get a complete scrub down from head to toe and a fresh change of clothes on, vital signs would be taken, medications reviewed and given, and a meeting with the BMT doctor about the coming days. Mommy and Daddy have noticed that Delaney's reflexes have diminished and have now learned through asking questions and talking with the BMT doctor that her reflexes are no longer present. They will come back but It can take up to 2 years for her body to regenerate that function. Yet the weight of another challenge for Delaney to bear, but it won't break her or her fierce spirt. It was a rough transition for Delaney to come from home to the hospital, she did not want to be here, she wanted to be at home with her brother. Delaney woke up around 1 am, scared, forgetting where she was, and became so worked up, she vomited and from then on it was a restless night.

Today had been long, again Delaney needs 3 baths per day, brush her teeth 4 times per day, diapers changed every 2 hours or sooner, a Broviac dressing change, 2 linen changes per day, vitals every 4 hours and 4 hours of chemotherapy drugs. Today will be Delaney's 20th day of chemotherapy in only 4 months, tomorrow will be her 21st and final day chemotherapy treatment. As the chemotherapy settles in Delaney's body, the days will become more challenging, and difficult, emotionally and physically for us all, but that brings out the fierce. Thank you for all the prayers, love and support. As always.... GO TEAM DELANEY!!!

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

Ready and Fierce For Tomorrow!

Delaney has been given the green light for tomorrow. Her blood counts are good and she will be able to start as schedule. Delaney will be admitted tomorrow on her day, FIERCE FRIDAY, and of all days Valentines day, where she can go to work on cycle 6, with all the love of Team Delaney behind her! Delaney is doing great today, happy and in good spirits! Thank you for all the prayers, love and support!! As always.... GO TEAM DELANEY!!!

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

Thursday, February 13, 2014

Wednesday Appt. Update at UCSF....

Delaney was restless last night, and for reasons unknown, she has not been sleeping good at all the past couple nights. Today was a long day for Delaney, Mommy was up at 430am making sure things were packed and ready to go, Daddy was sleeping next to Delaney on the couch. Mommy got Daddy up at 530 to get ready and pack the car, and Delaney was up and getting ready to leave the house at 6am to head to UCSF, today would be an 11 hour day for Delaney, 7 hours was spent in the hospital, 1 hour with the BMT doctor and 5 of those hours consisted of doing a continuous blood draws. She would have her blood drawn 7 times today. These 7 blood draws will test the function of Delaney's kidneys and the results will it be know until tomorrow. The BMT doctor examined Delaney today, reviewed her blood counts, and medications and assessed her to see if she would be ready for admission this Friday. Upon his assessment Delaney is ready for admission, pending tomorrows blood draw and the results that will follow. Delaney is fiercely poised, and ready to finish writing a long chapter on her chemotherapy treatment, in her story. Tomorrow will be a busy, hectic, stressfully, and anxiety filled day as we prepare for admission and watch Delaney get ready to grapple with another cycle of chemotherapy,.....FIERCE yet gracefully.

Yes, Delaney will start the beginning of the end of her 6 cycles of chemotherapy treatment, but her story is still unavailing itself before our eyes. Delaney will have another MRI and lumbar puncture following the end of chemotherapy. Her case has been taken and discussed with the "Tumor Board", and how we understand it, consists of doctors from different hospitals, and they will again review Delaney's case, to see IF, ( we emphasize IF ) and what other treatments, may or may not, be necessary. This is the reality, a real fear, the unknown. But we must concentrate on the present and focus on getting Delaney successfully through her chemotherapy. Thank you for all the prayers, love and support. As always ...... GO TEAM DELANEY!!!!

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

Tuesday, February 11, 2014

Two Day Recap...

The past two days Delaney has remained stead fast on recovering and preparing fiercely to take on cycle 6 of her chemotherapy protocol. Yesterday, Delaney had a blood draw at 545 am to track her blood counts and how her body is recovering. It was off to Walnut Creek Kaiser, then back home to get Delaney for a quick turn around and head out to Oakland Kaiser for an audiology appointment at 1015 am. The audiology appointment went well, Delaney participated in activities and games with head phones on to asses her hearing as well as an ear bud that makes acoustic sounds in the ear and receives them back (like sonar on a submarine) to see how good of a response there is and if there is damage done to her hearing from the chemotherapy. Again she had great results and to our relief her hearing is normal. This is not always the case, Mommy and Daddy were told she would likely lose her hearing over the course her chemotherapy treatment. We then received results for Delaney's blood work and her blood counts have recovered to the standard of a child that is going through chemotherapy, not recovered to the normal limits of child. As the BMT team said, Delaney is over the rough patch, and is looking good for admission on Friday for cycle 6. Thursdays results will confirm. After a busy morning on Monday, the rest of that day and today Delaney has been very happy and in great spirits. She has played with, of course, brother, every chance she can get. The weather had been very pleasant and Delaney has been able to enjoy 3 walks on separate occasions. This helps break the routine of home and hospital, and allows her to be a child, to explore, and take everything around her in. On Delaney's walk she was able to wave at neighbors, look for animals, watch kids at the skate park, watch a local girls softball team practice ( which shouted TEAM DELANEY! ). So the past two days have been great. Tomorrow Delaney has two appointment at UCSF, one to clear her for admission for her last chemotherapy treatment, and the second another 5 hour appointment with consecutive blood draws to test Delaney's kidney function. This will assess if there is any damage done from the chemotherapy, and how much chemotherapy and blood her kidneys can filter. Test after test. Chemotherapy may be the tip of the sword but Delaney is a razors edge. Mommy and Daddy both agree this is overall most healthy Delaney has been, going into any of her chemotherapy treatments. She has always been and has kept it FIERCE, finishing strong. Thank you for all the prayers, love and support. As always.... GO TEAM DELANEY!!!!

P.S. THANK YOU TEAM DELANEY!!!!

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

Monday, February 10, 2014

Sunday Update

Delaney continued her story today happy and full of energy and for the most part it was a good day. However, Delaney did vomit this morning and it was going to be a busy day for her. Delaney's home health nurse came by today to continue to evaluate her progress. Today Delaney will need a Broviac dressing change, both caps changed on her lumens, continue to wear her eye patch for 2 1/2 hours, and still negotiate having her diaper changed almost 20 times today, she still has loose stools as a result of the chemotherapy she receives along with low blood counts and a liquid only diet. Delaney's visit with the nurse went well, Delaney is maintaining her weight, a goal that was set at the start of chemotherapy in October, her dressing change on her Broviac was accomplished smoothly and the site where the catheter enters her body is still very clean. The Broviac is not taken lightly considering it is a catheter that goes directly to the heart (or how we see it a direct line where and infection can start) to deliver medication and chemotherapy drugs. Delaney rested and played, Mommy and Daddy were able to take her outside for a few brief moments while it was raining. She has never used an umbrella in the rain, so she wanted to use her umbrella. It was nice to have her experience the sound of rain hitting her umbrella. It is the simple, small things or opportunities that this disease can try effect, but we see a chance to slow down, pay attention to those simple, small things and opportunities. Such as being out in the rain under an umbrella with your daughter. She will have only 4 more short days before she will be admitted for cycle 6. And in those 4 days Delaney will have 2 blood draws, and 3 appointments. One appointment is to test Delaney's hearing to make sure there is no hearing loss form the chemotherapy she is getting, next she will meet with a BMT doctor to see if she is clear for admittance for cycle 6 of chemotherapy and the last appointment, a 5 hour appointment, to collect blood every hour to test her kidney function after receiving a radioactive dye. Delaney is staying fierce, getting as strong as she can to take on cycle 6. It is going to be a busy week. Thank you for all the prayers, love and support. As always..... GO TEAM DELANEY!!

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

Sunday, February 9, 2014

Saturday with Pink Heals

Team,

Delaney and the family want to thank everyone for her special day today and especially to Solano County Chapter of Pink Heals for putting such a smile on Delaney's face and the families. She was so excited to see the truck and all the support today!! We also want to thank LPFD and the huge Team for coming out for the support. Pink Heals gave Delaney shirts, a gift package and a cool ride in the pink fire truck. Delaney along with other cancer survivors at today's event got to sign the truck and put their mark on such a great organization that helps fight cancer like Delaney has been doing with her FIERCE attitude.

Thank you very much for making today so special for Delaney, the family, and others fighting the battle with Delaney.

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

Friday, February 7, 2014

Thursday Update

Delaney is doing great. It has been a longer than expected week for Delaney, Mommy and Daddy, but an overall successful week that took lots hard work. Delaney had a blood draw this morning at 545am and blood was processing at Walnut Creek Kaiser by 7am. Delaney's blood counts came back great and she has recovered for the most part, only from a chemotherapy standard, and not like a normal healthy individual yet. Delaney seemed a little nauseous today and did vomit in morning, but we were able to control the nausea and make sure she got the nutrition she needed. Everyone is exhausted, it is time for much a needed rest. Delaney so keeping fierce. Thank you for all the prayers, love and support. As always ....... GO TEAM DELANY!!!

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

Thursday, February 6, 2014

Wednesday Recap

Although Delaney was very happy and she is as strong and fierce as ever, the day started out great but became frustrating and challenging. Yesterday, Delaney once again further cementing her motto, reminding us, and though she be but little, she is fierce. Delaney's home health nurse came by to asses Delaney and her progress after cycle 5. Everything checked out great, Delaney is making good ground on recovering, ramping up for her last chemotherapy cycle. The problem began when Delaney's feed tube became clogged after only 16 days of being placed. Mommy and Daddy tried feverishly for over an hour using different techniques to unclog the NG tube, before it would have to be pulled and replaced. Also Knowing that having an NG tube placed, brings more stress and anxiety than anything to Delaney. We called the home health nurse back after she had left because we knew it was clogged, it needed to be replaced, but we kept trying. The home health nurse was back at our house, and she too had no luck. We had to pull the tube. Next we had to place a new tube at home, we had to place the tube 3 separate times just to get it in the right spot. This was very hard for Delaney. It is never easy for Mommy and Daddy to hold her in position to place the tube, hearing her and seeing her in so much discomfort. Then it was off to Livermore kaiser for an x-Ray to confirm placement. The x-ray confirms it was in the right spot but needed to be advanced further to make sure it stays in her stomach. So again Delaney had to be held and the tube advanced once more. When we got home we received a call from Delaney's neuro oncologist and he wanted her tube advanced another 2cm, so her home health nurse was back in 30 minutes and again we had to push Delaney's feeding tube further in. It took a total of 5 sticker changes on her face, but finally her tube was in the right spot. And she had not had any food from 1030am until 3pm. It is not easy to put an NG tube in, it takes a some finesse, and then to put one in on a 2 1/2 year old. It was a rough day, but Delaney kept it fierce, and she was exhausted afterwards, she missed her nap yesterday due to NG tube. Not the day we were expecting but, nor Delaney. Delaney, Mommy and Daddy must be ready to adapt and adjust to the day, we have learned it is never our day to plan. Thank you for all the prayers, love and support. As always... GO TEAM DELANEY!!!

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

Monday, February 3, 2014

Weekend Update

Monday Update...

Delaney had a good night last night. Mommy and Daddy did a blood draw this morning again and Daddy drove Delaney's blood out to Kaiser Walnut Creek this morning and while Daddy was gone Delaney had another nose bleed. It ...was more manageable this time, but still worries us since she just got platelets yesterday. Her blood work came back and we were given the ok to stop her nightly injections of GCSF, which helps increase her white blood cell count, and one of her antibiotics (she is currently on 4 antibiotics). Most of the day was spent chasing brother around and playing. Delaney even played dress up with a ballerina costume. This made her so happy. Delaney was feeling good and her counts were up so we took a drive over to Grandma and Grandpas house to look at the animals from the car. She saw some sheep, and cows but especially loved seeing all of the horses. Mommy and Daddy still go through their ups and downs. Everyone at the house is just flat out exhausted, especially our FIERCE little fighter. She fell asleep at 5pm tonight and hopefully will sleep through the night, but Mommy and Daddy are prepared to be up early or all night. Thank you for all of the prayers, love and support. As always.....GO TEAM DELANEY!! "And though she be but LITTLE, she is FIERCE!"See More

Sunday Platelets at UCSF

We knew we were in for a long night last night considering Delaney went to sleep around 6pm. But with her body recovering from chemotherapy and working hard to graft the stem cells back into her bone marrow, we al...so knew she needed rest and lots of it, so we let her sleep. But Delaney was up at 1130pm and we could not get her to go back to sleep until 1am. Mommy and Daddy lost out on much needed rest and Delaney missed out on some of her formula feeds for the night. Delaney then woke up just before 6am to start her day. Just as the day was starting to get traction Delaney has another nose bleed. The nose bleed was not as bad before, we were able to stop it sooner. Mommy called the BMT to advise them that Delaney had another bloody nose again, (she was just transfused with platelets this past Thursday). The BMT doctors said that blood labs should be taken in today. So blood was drawn, taken to the lab, and her counts came back and her platelets were low again. Her count was 32, and we have come to recognize that when her platelets drop in the 30's she becomes symptomatic with nose bleeds and needs to be transfused. So it was off to UCSF for more platelets today, not what we were expecting but we needed to get Delaney, what she needed. Mommy and Daddy would rather be proactive rather than reactive in Delaney's care. At UCSF things were smooth, Delaney was happy for some time, but soon became worked up and wanted to go home. But she got so worked up she vomited all over Daddy. It was a rough remainder of the stay at UCSF. However, Delaney was discharged later, and was happy and excited to go home. The rest if the night at home was extremely busy. Among every thing else Delaney also needed her Broviac dressing changed before she goes to sleep. It has been a long very stressful day for everyone. But we keep at it, just as Delaney does. Delaney will have another blood draw tomorrow to see her blood counts again. Thank you for prayers, love and support. As always....GO TEAM DELANEY!!! "And though she be but LITTLE, she is FIERCE!"See More

Saturday Update,

Delaney steam rolled through another day. She was up early, napped early, and went to bed early, she was asleep by 6pm. But in between she was playing hard, she wanted to be everywhere, chase brother, and most importantl...y she wanted to be independent. This was great for Mommy and Daddy to see, to see her so active and happy, they loved it. By allowing Delaney to be as active as she can be and enjoy being a 2 1/2 year old child, that means walking with her around the house hunched over for hours on end (she still cannot walk on her own since her brain operation), pushing one of her 12 different medications literally on the run as well as formula. But we try to give her and allow her to take pleasure in some of the everyday things that are easily taken for granted. It was a good thing grandma and grandpa were able to be at the house to help Mommy and Daddy today. Days such as these can sometimes mask worries, bad memories, and Delaney's current prognosis, but it does not mask how fiercely Delaney works on her daily life and obstacles. Mommy and Daddy are so proud of her resilience. Delaney is still having to contend with a side effect of Thiotepa, where she has diarrhea, 5 plus times per day since her first admission at UCSF back in December. Delaney is still receiving her GCSF injection nightly to boost production of her white blood cell count. We hope some time this week her counts will have recovered enough that we may stop them. It was a great day, she is the strongest, and most lively we have seen her in quite sometime. Thank you for all the prayers, love and support. As always..... GO TEAM DELANEY!!!!

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

Saturday, February 1, 2014

Friday Recap

Delaney had another great day today. She is surprising us by asking for food. Today she wanted a cake, so that is what she got. While she didn't eat any of it, it certainly makes us happy that she is asking for it. She is on prescription medication for anticipatory vomiting/nausea to help her eat or have confidence to eat. It is tough to watch as Delaney can get nauseous from purely the sight of food. Today was FIERCE Friday and that was Delaney's motto. She was up and walking around, with Mommy and Daddy's aid, of course for the majority of the day. She has little mood swings, but she does so well. We are trying to cut back on her anti emetics and increase her fluid/formula intake. This takes some fine tuning and thought since Delaney is still quite nauseous and we don't want to take away the little confidence she has built up for food. There isThe day was pretty simple, no nausea, lots of play time and cuddles when we could get them. We are hoping for another great day tomorrow and for the next 2 weeks for that matter. Delaney is scheduled to be admitted for her 6th and FINAL round of chemotherapy on February 14th. Our goal until that day is to keep her healthy and happy so nothing sets her back from finishing her treatment and kicking cancers butt!! Thank you for all the prayers, love and support. As always..... GO TEAM DELANEY!!!

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