Friday, January 31, 2014

Transplant Thursday...

It was a great day today for Delaney. She bounced back as fierce as ever. Delaney did not vomit today, but her morning was early, 545 am blood draw. Daddy took the blood to Walnut Creek Kaiser, Mommy was busy packing everything Delaney would need for the day because Delaney has an appointment at UCSF, for blood or platelets. We will not find out what she will need until we receive to results on the way to UCSF. It turns out she would need both platelets and blood today. Her nose bleed was due to low counts. She has had low counts before but nose bleed was a very first and scary, especially for Delaney. Delaney did great at UCSF today, she took things as they came and powered through. The blood was transfused to Delaney over 3 hours and platelets were transfused by gravity over 30 minutes or so. Then it was time to head back home, it has been a long day for Delaney, Mommy and Daddy, who were all exhausted beyond measure. Delaney was able to nap for 3 1/2 hours, resting her body, and allowing her body to absorb her transfusions. After her long nap Delaney awoke even more re-charged, happy and ready to play with brother. As busy and long as the day was it was Delaney's day. We are very optimistic and looking forward to tomorrow for more healing, recovery, and Fierce Friday! Thank you for all the prayers, love and support. As always....GO TEAM DELANEY

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

Thursday, January 30, 2014

Wednesday Recap

The day was relatively smooth but tonight was not. Delaney did not vomit today, this is a little victory, on the other hand she still does not feel well at all, her energy level and spirits were up and down all day today. Delaney's home health nurse came by to assess her, and Delaney is looking good. Soon after the visit from the home health nurse Delaney napped for 3 hours. She is working so hard on recovering. The rest of the evening went well, it was calm and things were just getting settled in for the night. Daddy was with little brother in the toy room and Mommy with Delaney in little brothers room playing with toys. Grandma then came out to Daddy and said that Mommy needed him, Delaney's nose began to bleed. Mommy was holding Delaney, her nose was actively bleeding, and Delaney being only 2 1/2 was scared and did not know what was going on. Daddy brought Delaney to the kitchen and was trying to pinch Delaney's nose for pressure, but Delaney did not want her nose squeezed, she was shaking her head side to side making it very difficult and messy, not to forget her feeding tube goes up one of her nostrils so a complete pinch was difficult. She was then sniffing the blood back up and into her mouth and throat. In the mean time Mommy was in the phone with the on call BMT doctor and Grandma helping Daddy. This is not a typical nose bleed because Delaney's platelets are low, and she cannot clot well, stopping the bleeding, and she is severely neutropenic with her WBC is 0. By this time she had a nose bleed for about 15 minutes and if the nose bleed did not stop within 5 more minutes Delaney needed to go to the ER for platelets. Grandma held Delaney, Mommy and Daddy scrambled to head out with Delaney. Mommy was packing medications, clothes, on phone with doctors, and doing 5 other things. Daddy was wiping blood from Delaney's mouth and teeth, she was starting to retch. Fortunately Delaney's nose stopped bleeding, Grandma could pinch Delaney's nose only if Delaney could pinch grandmas, this helped to slow the bleeding. The bleeding stopped and Delaney was able to stay home. It was messy, scary, it was horrible for Delaney. After it stopped Delaney looked at us and said "need break". If she has a nose bleed tonight she will go in regardless. Delaney has a blood draw tomorrow, and appointment to receive platelets and or blood. Delaney is being tested on every level possible, she is staying fierce, and rising to every occasion. Thank you for all the prayers, love and support. As always... GO TEAM DELANEY!

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

Wednesday, January 29, 2014

Tuesday Recap

Delaney's story continues, on a better note today. She slept well through the night, until about 6am and woke up asking and looking for Mommy so Daddy took Delaney to Mommy. This made her happy and she wanted to play right out if the gate this morning. Despite things going smooth this morning Delaney did vomit. That would be the only vomit for the day, but she still is very nauseas and cannot intake much fluids or foumula. Today Delaney only received about 600 calories, that includes overnight feeds, 1200-1400 is roughly the daily caloric intake that a growing 2 year old child needs, we are working hard everyday to give her all she can tolerate. The theme for the rest of the day for Delaney was taking it slow, resting and have an uneventful afternoon. Delaney went to bed a little earlier than normal but she needs the rest, her body is at rock bottom and is working hard to rebuild itself the next 2 1/2 weeks. Overall Delaney is doing better today, happy, a little moody, but as expected when she is so sick. Beginning tonight Daddy and Mommy will have to administer a GCSF shot in her thigh this will continue until her blood counts recover and the doctors tell us to stop. Thank you for all the prayers, love and support! As always...... GO TEAM DELANEY

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

Tuesday, January 28, 2014

Busy Monday Recap...

Today was a struggle. With ups and downs. It started at 330 am when Delaney began vomiting. Mommy had finished giving medication, and Daddy was sleeping next to Delaney on the couch, when she started to vomit. Mommy and Daddy were right there to comfort her. It was emotional for Mommy and Daddy when Delaney stopped vomiting, she grabbed a clean side of the towel that she had just been vomiting in and with eagerness in her eyes to please and looking for approval she cleaned her mouth and chin, as though she was trying to make a wrong a right. Those tiny moments can make us crumble. There was not much rest after that from cleaning up, administering more medications, and then a blood draw at 545 am. Blood was in processing at Walnut Creek Kaiser by 7 am. When the counts came back, there was no question that she needed platelets. So it was off to UCSF by 11am. Delaney was happy and pretty relaxed at UCSF, considering her busy morning. Delaney received the platelets with no reaction, she got what her body needed and she was free to head back home. When Delaney got home she was doing great, very active, was playing with brother, and we were able to give her more formula. Grandpa came by later that evening to spend time with Delaney and the family. Delaney enjoyed seeing Grandpa. And just when Delaney was settling in for the night, and we thought the vomiting subsided, she vomited again. It was a day of ups and downs, a couple good days then a rough day, taking back ground we gained. But Delaney does not waiver, she takes it in stride and pushes on, and Mommy and Daddy follow her lead. After every chemotherapy it is a challenge to help Delaney emerge from the effects of chemotherapy. Days like theses are taxing and long for Delaney. They are exhausting mentally and physically on Mommy and Daddy. There is something magnetic about Delaney's fierceness that pushes us as a family. Thank your for all he prayers, love and support. As always ... GO TEAM DELANEY!!!

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

Monday, January 27, 2014

Two Day Update...

Yesterday, Delaney was doing much better with her nausea and vomiting. Delaney only had 1 vomit. By being able to control Delaney's nausea and vomiting Mommy and Daddy were able to gain some needed ground on her formula and liquid intake. Delaney's spirits we much better than the day before but she still is not well and her blood counts are continuing to drop if not at rock bottom. She had more energy yesterday playing with Mommy, Grandma, and of course brother. One thing for sure, is that compared to the last cycle, cycle 4, Delaney has come home wanting and trying to walk more. As for today, Delaney kept her momentum going and is still vomit free! Although her energy level is still low, she remains happy and and somewhat active. Delaney still has no interest in food, however today she had 2oz of orange juice and 7oz of water on her own, an improvement, Mommy and Daddy will make up what they can by pushing formula and pedialyte. Delaney will need on average around 65 syringes everyday to push medications, formula, pedialyte, and water. Water must be used to flush everything out of the feeding tube, to make sure it gets to her stomach and so that the tube does not get clogged. If it clogs it must be removed and she cannot get anything until a new one is in place. For most part today was a relaxing day for Delaney, and a much needed and deserved one. But she always has that fierce glint in her eyes. Tomorrow Delaney will have another blood draw, and she will be getting platelets or blood or both. So it will be another trip to UCSF.

We as a family are left speechless by the continuous outpouring of love and support for our daughter Delaney. It brings us to tears, to see everyone show up and fiercely rally behind Delaney. Yesterday was a perfect example, of the fundraiser Altamont Beer Works put together, with Hatton Competition BBQ, Kens Wood Fired Pizza and the bands Silent Partner and Rock on Tap. Thank you simply is not enough. With all of that positive energy, thoughts, prayers, and conversations it is re-energizing, breath of fresh air. And with that we take back home to Delaney and project that positive energy and motivation to her, form Team Delaney, thank you....thank you. What a FIERCE creature Team Delaney has become. Thank you for all the prayers, love, and support. As always... GO TEAM DELANEY!!

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

Sunday, January 26, 2014

Friday Recap

It was a bad day today. Delaney had the worst nausea and vomiting out of all the rounds of chemotherapy so far. She also has diarrhea, a side effect of Thiotepa the chemotherapy drug she received. Delaney vomited 5 times before 1pm. She could not keep anything down, from anti-nausea meds, to liquid and formula. It was very discouraging and painful for Mommy and Daddy. This is not your everyday flu with nausea and vomiting, Delaney is on 4 different anti nausea medications around the clock, 3 of which are prescription only and receiving the maximum dose possible in 24 hours. With that said, no medication seemed to be able to control the vomiting or nausea today. We talked with the BMT doctors and dehydration is a concern and the effects it would have on Delaney's kidneys due in part, because of the chemotherapy she has been receiving. Delaney does have a "reserve" of hydration, electrolytes, but if Delaney, Daddy and Mommy cannot manage the vomiting, over night IV hydration would start in Monday. Although things turned in Delaney's favor the rest of the afternoon, she was nauseous but did not vomit and was able to keep liquid down, but she is well behind on her goal for hydration for the day. Delaney's counts came back reasonable, but the effects of chemotherapy are being seen, she has an appointment on Monday at UCSF for platelets and possibly blood. Mommy and Daddy did all they could today for Delaney, but felt like they failed her. Tonight is a new night, and tomorrow a new day. Mommy and Daddy will follow the example set by Delaney, and be fiercely persistent on gaining the upper hand on nausea and vomiting. Delaney had it rough today to say the least but managed to make it to the play room with brother just a couple if times for a few minutes. She fought fiercely minute by minute today never backing down. Thank you for all the prayers, love and support. As always.... GO TEAM DELANEY!!!

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

Friday, January 24, 2014

First 24 Hours Home...

As Delaney headed home after her discharge from UCSF, Delaney, Mommy, and Daddy knew they had more than their fair share of work cut out for them. Delaney arrived home full of smiles, excited as ever just to see her little brother. First priority was to make sure Delaney was happy and relaxed back at home. Then Mommy and Daddy had to find themselves quickly in front of the white board that Daddy created to keep track of medications and times, temperature and times, Delaney's weight, cap changes, dressing changes, NG tube date placement, fluid intake for the day including formula, liquid, and flushes, important contact information and a month calendar for up coming appointments, blood draws, and medication start and end dates. It is organized chaos. This keeps things smooth for Delaney making sure she gets the best care Mommy and Daddy can provide at home. The rest of the evening went smooth, Delaney was happy to be at home, she went to bed early just before 9pm. Mommy and Daddy were able to start Delaney's feeds early. Unfortunately, just before midnight Daddy woke up to Delaney stirring and with in minutes, Delaney was vomiting, Mommy was in with in seconds to help. Delaney vomited all the formula she had in 2 hours about 100ml. It was undigested formula, this was a big set back for today. Delaney will be behind in nutrients and calories needed. After all was done we were able to go back to bed around 130am. As for today, Delaney did great, she was happy, did not vomit, and seemed to have quite a bit of energy, more so than after her last chemotherapy and transplant. She is getting a little more tired, as expected, we will just do our best to support or fierce fighter through the coming weeks. Delaney's home health nurse came by to assess her and get a baseline on Delaney before the weeks ahead. Delaney will have another blood draw tomorrow morning, and depending on her blood counts there is a possibility Delaney could be headed back to UCSF for blood or platelets. The tidal wave of positive thoughts, prayers, love and support Delaney came with to UCSF, from you, Team Delaney, helped carry us all through cycle 5 of 6. It never gets easier. Thank you. Thank you for all the prayers, love and support. As always..... GO TEAM DELANEY!!

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

Wednesday, January 22, 2014

Heading Home...

Well, Delaney was able to keep the fever away, so we were discharged at about 1pm. The next few days will be a little hectic adjusting once. Thank you for all of the love prayers and support. Delaney is very happy to go home to brother.

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

Tuesday Transplant Day

It was a rough night once again, Delaney was very restless. After lowering and adjusting her anti-nausea medications, she still vomited in the morning when she woke up. Delaney remained nauseous all day fighting nausea and the harsh effects of chemotherapy on her body. All night and for most of the morning and afternoon Delaney has fought fiercely to keep a fever away. Her body was fluctuating between normal 98.6 and 100.3. 100.4 is considered a fever and a whole other protocol would take place in order to manage the fever. It was and will be stressful through the night watching for a fever. It is day zero for Delaney, transplant day. A day where Delaney will save herself once again. As we have spent many days and nights here at UCSF, on 7 LONG, as the floor is known. We have become more knowledgable of the BMT and oncology world, by talking with the nurses and doctors. In the BMT world, when Delaney is done with treatment, she will have 4 birthdays to celebrate in each year. Her first birthday, being her actual birthday May 21st, her second birthday is December 23, her first rescue to save her self, her third birthday today January 23rd, her second rescue to save herself, and her fourth birthday is still to be determined upon her next admission. It is considered a birthday every time she saves her self, with her own stem cells, because the doses of chemotherapy she receives are so big that without her own stem cells, which were harvested months ago, she would not recover. Delaney is close to finishing another chapter of her story, she has a possible discharge set for tomorrow pending nothing comes up that would keep her here. Delaney is resting, yet as fierce as ever. Thank you again to the nurses and doctors at UCSF, on 7 LONG, and of course all of you out there, Team Delaney. Thank you for all the prayers, love and support. As always... GO TEAM DELANEY!!

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

Tuesday, January 21, 2014

Monday Update at UCSF...

It was a very rough morning for Delaney. She woke up out if her sleep at 545 am vomiting. Daddy and Mommy were right there by her side comforting her and helping her. Durning the course of Delaney vomiting, daddy noticed her feeding tube or (NG tube), started to come back up and out her mouth by this time the nurse was in Delaney's room and with an extra set of hands the nurse pulled Delaney's tube completely out from her nose for safety. We have been told this could happen, and it was the first time. So soon after we had to place another NG tube, because we had to give Delaney medication as well as food within an hour or two. We could tell Delaney had bouts of nausea through out the day, and so far has been able to keep it down. Delaney's day of rest was more like a day of restlessness. She gets IV Benadryl every 8 hours and should get sleepy, but she did not. She was tossing and turning all day and just could not get comfortable. Tomorrow is the big day. She will receive her stem cells to rescue herself sometime in the afternoon. There is a very distinct smell that lingers in the room from the preserving agent used to preserve Delaney's stem cells. Unfortunately about 7pm, Delaney had her second episode of vomit. She felt much better afterwards, but doesn't make Mommy and Daddy feel good. It's not easy watching your baby get sick and knowing there is nothing you can do. We are hoping for an easy night. We are planning our overnight feeding schedule and will probably have to go down in feeds and up in meds to ensure Delaney can keep her food down. It will be a balancing act until the lasting effects from chemotherapy wear off. We appreciate all of the love, prayers and support! As always....GO TEAM DELANEY!

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

Monday, January 20, 2014

Round 5 Day 2 Treatment Recap..

Yesterday was a good day. Delaney finished up her chemotherapy yesterday around 1pm FIERCE as ever. Again, yesterday, we had to give Delaney 3 baths, brush her teeth with sodium bicarbonate 4 times (it tastes like very thick salt water), do a Broviac dressing change do a linen change, push 700ml of formula through her NG tube and try to entertain her as best we could. Delaney had her ups and downs, but this is to be expected from a 2 1/2 year old who is stuck in a hospital bed. Mommy and Daddy, too had their ups and downs emotionally. The day went by fast and Delaney was asleep by 10pm. We were successful at having one day with no vomit. This is a huge success for Delaney as chemotherapy always makes her sick. She did not take anything by mouth yesterday, which is also to be expected. Monday is a day of rest for Delaney, followed by her Stem cell rescue at 3pm on Tuesday and hopefully discharge to go home to little brother Wednesday. Thank you for all of the love, prayers and support. We are very blessed to have such a big team! GO TEAM DELANEY!!

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

Sunday, January 19, 2014

Saturday Recap, Round 5 Day 1 of Chemo....

The night went well for Delaney, she woke up happy, and ready to take on cycle 5. Delaney started her anti-emetics over night to prepare her for the big doses of chemotherapy she will receive. Chemotherapy started at 9am and will end somewhere around 1 pm. From one of the chemotherapy drugs she is receiving, Thiotepa, she will need 3 baths per day, brush her teeth 4 times per day with sodium bicarbonate, her diapers will need to be changed every 2 hours around the clock and have a broviac dressing changed once a day. The reason for this is because Thiotepa is excreted from the body and if the chemicals are not wiped from the skin it can cause very bad skin break down. Mommy and Daddy met with the BMT doctors and discussed treatment and management for Delaney. The BMT doctor told us that Delaney will already need a blood transfusion this Monday. It was an extremely tough day for Mommy and Daddy, there were many mood swings with Delaney, at times she was fuming mad, and that's ok, we have come to understand since day one, that is her FIERCE, helping her fight through her story. It was very difficult but at the same time we do not understand how it feels to go through what she is going through and we try to be patient. There is a lot to ask of a 2 1/2 year old in one single day, a lot. There are no words to express what is seen through the eyes of parents watching their own child go through chemotherapy. Yes the day was very hard, but mMmmy and Daddy look on the bright side, Delaney tolerated her chemotherapy, did not vomit, still smiled, ate 3/4 of a hot dog and a 1/2 bag of chips (we don't know where that came from, she has not been eating for months). Sunday is another big day. Thank you for all the prayers, love and support. As always... GO TEAM DELANEY!!!

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

Saturday, January 18, 2014

Friday Recap.....

It was busy getting Delaney settled in her room yesterday, it is tough, only a hour into admission at UCSF Delaney is asking and wanting to go home. Mommy and Daddy have a difficult time explaining to Delaney why we are here, and what is being done. We just reassure her that Mommy and Daddy will be right by her side, we are not going anywhere, we came here together and we leave together. Everything that comes in to the room must be wiped down, with sani-wipes, everything. We packed 4 bins, everything that is in the bins were wiped down prior to packing. All clothes must be washed in hot water and dried on high heat prior to Delaney's admission. Mommy and Daddy, each day must do a 2 minute scrub down up to our elbows, and if we leave the hospital we must do it again upon returning to Delaney's room. This is to do everything we can to keep Delaney's room as clean as possible, during chemotherapy and her stem cell transplant. Delaney herself received a bath once in her room, and changed into clean clothes. Next we met and discussed with the BMT doctor, nurse practitioner, and nurses how Delaney did with her last treatment, what the plan will be this admission, we went through her plan for anti-emetics, got her height, weight, and base line vitals. Following that we did all we could to make Delaney happy and relaxed as possible. Delaney's plan is as follows; Friday pre-hydration and medication, Saturday and Sunday chemotherapy over 4 hours each day, Monday a day of rest, Tuesday she will receive her stem cell transplant or also known as her stem cell rescue, and finally if everything goes well possible discharge on Wednesday. From Saturday onward for about 2-3 weeks it will be extremely tough for Delaney as her stem cells find their way back to her bone marrow and graft themselves back in an produce new cells for her body. Thank you for all the prayers, love, and support. As always ......GO TEAM DELANEY!!!

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

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Friday, January 17, 2014

Thursday Update.......... Round 5 Begins Tomorrow....Busy Day Today!

This will be a short update for today Team. Delaney's blood counts are back, we emailed the results to UCSF, and after reviewing her blood counts she is good for admission tomorrow to begin cycle 5 of 6. The doctors said "whoa amazing recovery," but that's our Fierce Fighter continuing to WIN. As the stress, and anxiety mount for Mommy and Daddy there is much to do, making sure most importantly Delaney has all she needs, ready to go, as well as Mommy and Daddy. There is much to do, it will be an even busier household today. Delaney is resting well, looking and feeling great, she has fought fierce to get back to her healthy self to take on Cycle 5. Delaney is already getting her game face on, and what no better day to go in on than, FIERCE FRIDAY, bringing a tidal wave of positive thoughts, prayers, love and support, thank you. As always..... GO TEAM DELANEY!!

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

Thursday, January 16, 2014

Wednesday Recap, Getting Ready For Round 5

Delaney was restless throughout the night, she was tossing and turning quite a bit. However, she slept through the night. Delaney likes to sleep on the couch and when we try to move her to bed and shut her feeds she will usually wake up, losing precious feeding time (she keeps formula down and for long periods of time best when she is asleep) and also important rest for Mommy and Daddy to keep up with the pace. For the most part for the last 4 1/2 months Daddy has not slept in bed but rather on couch next to Delaney. Which has become so uncomfortable. But what would us parents not do or put ourselves through for our children, and really Delaney has been uncomfortable beyond explanation this entire time. It was an early morning. On the road at 615 headed to UCSF. The visit with the doctor went well, he said Delaney looks great her blood counts look good except for her white blood cell count and over all ANC. Which is expected to be low with such chemotherapy she is receiving. Usually to be admitted for the next cycle her ANC should be around or above 500- 750. After tomorrow mornings blood draw and results we will know for sure if she will be admitted in Friday. Filling that appointment, Delaney had her GRF, to test kidney function filtration, this was done over 5 hours, yes long but tolerated well by Delaney. They drew blood for a total of 7 times. We will know the results tomorrow, if and how much damage is done from the chemotherapy she has received. We were home sooner than expected, with Grandma and brother waiting at the door to greet Delaney back home. The rest of the evening was spent trying to let Delaney enjoy the time she has left at home with brother, Grandma, and Grandpa before being admitted on Fierce Friday, to start cycle 5 of 6. We will know more if the plan by noon tomorrow as much as we don't want to see her get wiped out sick again, we want to help Delaney to continue to power through. What a team she has behind her... You TEAM DELANEY! Thank you. Thank you for all the prayers, love and support. As always.... GO TEAM DELANEY!!!

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

Wednesday, January 15, 2014

Tuesday Recap...

Sorry for delay Team Daddy fell asleep late last night so here it is. Yesterday was a very special day for Delaney. Delaney has been approved to receive a wish, from Make a Wish. This was a referral put in by Delaney's first original social worker. And she assured us that it was not only for terminally ill children, but for children facing life threatening medical conditions. From there requirements must be met and approved by Make A Wish. Delaney was assigned a team of 3 volunteers, of whom she met yesterday, from Make A Wish. Once they arrived at the house and were greeted, Mommy and Daddy met with one wish grantor and the other two wish grantors played with Delaney in separate room without distractions or influence so Delaney could express her wish. No information was divulged to Mommy or Daddy about Delaney's wish. That is part if the magic to allow them to be creative about Delaney's wish. We are very grateful that she gets to participate in such a great program. However, this wish will happen when Delaney is done with treatment, walking, and the wish is signed off by a her medical physician saying that she is healthy enough and it is safe enough for her, so she can fully enjoy her wish, whatever it may be. Today, Delaney will have a busy day. She has an appointment at 8am at UCSF to meet with a doctor to make sure she is ready to start cycle 5 of chemotherapy on Friday. After that she will have a GFR blood test that will go over 5 hours today. They will draw blood periodically to see how well and fast her kidneys filter her blood. This is important because it will give the Blood and marrow transplant doctors the information needed to determine how much chemotherapy her kidneys can handle and filter. It will be a long day. Delaney remains in high spirits, happy and ramping up fiercely take on cycle 5. Thank you for all the prayers, love and support. As always... GO TEAM DELANEY!!!

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

Tuesday, January 14, 2014

Late Monday Night Update....

Delaney continued to have another good day. Her blood draw went great this morning and all of her counts look good, so she did not need a transfusion, on the other hand her WBC count is still low and she remains neutropenic, (not able to fight of infection). She is showing a little interest in food another apple slice and almost 2 pieces of salami. Delaney loved playing with her brother today, as always and played some educational games on the iPad. With this good day, and a few moments here and there, Mommy and Daddy had time to reflect on what Delaney has endured the past 4 1/2 months and counting, and how far she has come. With 2 cycles left, this is what she has blazed a trail through.

September 9th missed little Merlin's 1st birthday (Delaney was admitted to hospital) September 10th Diagnosed with brain tumor
September 12 brain operation to remove tumor
52 total admitted overnight stays at the hospital (22 days of that was in the Pediatric Intensive Care Unit)
4 1/2 months of at least 1 vomit a day
2 operations (1 for brain tumor resection, 1 central line placement)
17 days of Chemotherapy
1 stem cell harvesting, a 5 hour harvest
1 stem cell transplant
1 Biopsy of tumor
3 MRI scans
3 CT scans
1 EVD placement for CSF drainage
11 X-rays chest/abdominal
1 complete blood transfusion (during brain operation)
10 Platelet transfusions
7 Blood transfusions
28 at home Blood draws
2 lumbar punctures
6 IV placements (4 at one time)
1 arterial line placement
1 foley catheter
4 EKGs
4 echocardiogram
4 renograms for kidney function
8 sedations ( 2 for operations, 3 for MRI, 1 EVD removal,1 stitches removal, and lumbar puncture)
7 NG tube (feeding tube) placements
2 surgical dressing changes
1 wheelchair for mobility challenges
4 transports by ambulance

All the while, Mommy and Daddy, with the support they have received, have been able to be at Delaney's side for every admittance, every appointment, every single moment of Delaney's story. That's how the posts began, Daddy and Mommy began to write in a journal at the hospital of the days events. Then uncle Travis created the Facebook page for Delaney's story. And to this day Daddy and Mommy write each post, pass it to Uncle Travis who posts the daily story and pictures. The idea is to some day compile everything, and show Delaney the story she wrote, the doctors, nurses, family, friends, strangers, organizations, businesses, and communities around that have rallied fiercely behind her. Thank you. Thank you for all the prayers, love, and support. As always.... GO TEAM DELANEY!!

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

Monday, January 13, 2014

Sunday Night Recap...

As Delaney continues writing her story, the past two days have been good. Delaney has been able to maintain her steady climb up to her recovery, and good health before her admission this coming Friday. Friday will admission for cycle 5 of 6 for chemotherapy, and her second stem cell transplant, to rescue herself. Yesterday, Uncle Travis and Auntie Lacey stopped by to visit with Delaney and little Merlin. Both enjoyed their time seeing their aunt and uncle. It has been so nice outside lately, and Delaney has had some good days it was hard not to take her for a little walk again. It was good for everyone to get out, get some fresh air, and stretch our legs because soon enough, staying inside at home will be the safest place for Delaney as to not risk her getting sick after her chemotherapy. Delaney's appetite is still for the most part absent today she had 3 cheezits and 1 apple slice, her liquid intake is better she is drinking in her own, but only water. Things remain at a very swift pace for Mommy and Daddy. Delaney remains happy, in good spirits, even with the deficits from the brain operation, and the lines coming out if her body a majority of the time Delaney acts as though there is nothing is going on, which amazes us. She is starting to understand she is sick, and it hurts Mommy and Daddy's heart to sometimes to have Delaney look at us and say "I want to do that, but I sick. When I better?" We reassure her that soon we will help her do what ever it is she wants. Delaney remains resilient, she does have a busy week ahead if her, blood draw tomorrow morning and Thursday, followed by 2 more appointments this week at UCSF and a planned admission on Friday. Thank you for all the prayers, love and support. As always...... GO TEAM DELANEY!!!

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

Friday Night Update...

It was a normal day for Delaney, she was up at 645 am, happy and ready for the day. Fierce Friday! By noon Delaney had a Broviac dressing change, both caps changed on her lumens, 8 different medications administered, wore a eye patch for 3 hours, and mommy and daddy administered formula and pedialyte through out because Delaney still does not have an appetite. By noon Mommy and Daddy are exhausted. It remained a low key day for Delaney with rest, and play time. Everyone has been itching to get outside so in the afternoon when it was a little warmer and nicer out, Delaney went out for a little walk, said hi and waived to a couple of neighbors and was out just enough for some fresh air. Mommy and Daddy are are well past the point of burnt out, sometimes wondering how to keep going, but one look at Delaney smiling, and we find a way. And we take things one day at a time, even hours or minutes at a time, just to make it through. It brings us back to the different daily quotes we put above Delaney's bed in the hospital for 34 days and one in particular stands out.... "I am not afraid of storms, for I am learning how to sail my ship." Lousia May Alcott. Just as Delaney is not afraid, we are together learning how to sail this ship through theses daily storms. Thank you for all the prayers, love and support. As always......GO TEAM DELANEY!!

"And though she be but LITTLE she is FIERCE

Friday, January 10, 2014

Thursday Update...

Delaney is staying fierce. She had a great day today. Delaney had a blood draw this morning to see how all of her blood counts are looking and to see if and what transfusions she may need. Out to Walnut Creek Daddy goes, blood in by 715 am. Much to our relief and surprise to the doctors at UCSF, Delaney's blood counts are holding strong, she did not need any transfusions, and the doctors anticipated that she may need a transfusion at some point this week, but were amazed at how her counts look. However, the doctors said it is still possible that her counts could drop over the weekend and may need blood products next week before her admission on Friday. That was the first half if the morning. Next it was out to Oakland kaiser for an optometry appointment for Delaney's eye. The tumor that Delaney had put pressure everywhere in her skull including her optic nerves and muscles. In some cases irreversible damage is done. The patching Delaney does helps strengthen the optic nerves and make her vision better, her sight out of one eye was diminished, but the patching she has been doing has paid off. Her vision is almost equal to her strong, good eye, this is a victory, she does not have permanent damage. On the other hand the eye muscles that attach to the eye its self are damaged, from the pressure of the tumor. This causes Delaney's eye to drift inward. Fortunately, this is correctable with surgery on her eye, cutting the eye muscle reattaching it, tightening the eye muscle, bringing it back to center, allowing the eyes to work together, improving her vision even more, (from how we understand it). Yes Delaney will have another surgery, this time on her eye, but it will have to wait until after chemotherapy is complete, to allow her body to heal properly. Another hurdle to endure, no. More like a pebble on the side walk, considering what Delaney has been through thus far. And the ophthalmologist agrees. We came home and of course played with her biggest fan, brother. She wants to stand more and wants to be so independent and walk "all by self". We try as best we can to let go and let her be independent, but she just isn't strong enough yet. She is getting stronger by the day though. Today was Grandpas birthday, so we celebrated with dinner at the house, and Delaney enjoyed that a lot. Thank you for all the prayers, love and support. As always..... GO TEAM DELANEY!!!!

We as a family are truly grateful, and speechless, for the countless acts of kindness and love for our daughter Delaney. Thank you for wrapping your arms around her and keeping her in your thoughts.

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