Saturday, March 29, 2014

5 paper chains down, 23 more to go......



Delaney has done very well with her first 5 days of focal radiation. The days are very long and exhausting, emotionally and physically for everyone involved. Delaney now is starting to figure out when she goes into the radiation room she is going to take a nap (sedated). It tears Mommy and Daddy apart when we are walking down the hall, holding Delaney in our arms, to her treatment room, and she looks at us and says, " I don't want to take nap now." It hurts, but we hold her and comfort her. Like most things in Delaney's story, there are many things we cannot control, we just do the best we can for Delaney, making things as light hearted and happy for her. When she wakes up from sedation, Delaney we have found out, is not all that happy. She is a little angry, or "FIERCE", but that is Delaney and that is exactly what has helped carry her through treatment thus far. This is understandable and ok considering all she has gone through and being 2 1/2. Yesterday Delaney had another NG tube change, she has now had an NG tube for 7 months now, she still is not eating. There are some exciting things that are happening as well. Delaney's eye lashes are growing back, it is such a beautiful sight to watch unfold. Delaney's walking is getting much stronger, her coordination and balance better as well. She is still not walking on her own, but standing up and walking along the couch on her own. She is starting to show a desire to try food it is exciting, frustrating, and sad at the same. Delaney is doing good, although everything is still a blur and moving at a pace faster than we can keep up with. Thank you for all the prayers, love, and a support. As always.... GO TEAM DELANEY!!!

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

Thursday, March 27, 2014

Delaney Update....

Today was day 2 of 28 of Delaney's radiation treatment. Yesterday, Delaney's first day of radiation was extremely difficult for Delaney, Mommy and Daddy. It was emotionally upsetting, and hard to cope with the reality of it all. Mommy and Daddy both cried and it was tough for Delaney to get back in the routine of being at the hospital. Each day begins at 545 am, to drive to Oakland Kaiser for a session of radiation. It will begin with an assessment by nurses, doctors, and anesthesiologists. Once her room is ready, Mommy and Daddy will carry her into her room where she will receive sedation, in our arms. Once she is sleeping we give her to the radiation team of 10 or so individuals. From there 2 CAT scans are taken then overlaid on her recent MRI to confirm where radiation will be delivered. Start to finish it is a relatively quick process, 30 minutes or so, and then she is wheeled back to us to recover and wake up from anesthesia. Delaney will then be monitored for an hour or so to make sure she is good to go home. Delaney will need a cap change on her Broviac everyday, due to the sedation drug she receives, then 4 times per day, Delaney's head at the site of treatment, will need 2 different moisturizers one right after another to hydrate her skin and protect it from breakdown from the radiation. Delaney remains, fierce and in good spirits. Today Delaney made a paper chain with Mommy, Daddy, brother, grandma and grandpa. There are 28 circles looped to one another creating a chain, each one representing 1 day of treatment, and once home Delaney can rip apart one loop counting down her days of treatment, she now has 26 more days of radiation. Things remain unbelievable, but we will do everything we can for Delaney. Thank you for all the prayers, love and support. As always..... GO TEAM DELANEY!!! "And though she be but LITTLE, she is FIERCE!"

Sunday, March 23, 2014

Next Chapter....

Delaney will begin her chapter on her focal radiation starting tomorrow. The house is full of stress, anxiety and fear of the unknown. Delaney and the family have enjoyed the 2 weeks of healthy recovery before tomorrow's start. The end is in sight, just 5 1/2 more weeks, one big push, and the fierce sprint to the finish line, because waiting there Delaney can take back her childhood. She has so much to catch up on and do, for she will be a big sister to 2 younger siblings, she has much to teach, much playing to do and love to share. Mommy and Daddy always at her side, Team Delaney at her back, her game face is on, "And though she be but little, she is FIERCE!" And she knows how to bring it. Thank you for all the prayers, love and support!! As always.... GO TEAM DELANEY!!!!

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

One of our favorite pictures of Delaney before with her serious face on!

Wednesday, March 19, 2014

Delaney Update...

Delaney has been busy writing about days in the sun and at home playing with brother and the family. This has kept Mommy and Daddy very busy, and we would like to thank Uncle Travis for writing the posts the past few days. Delaney still continues to recover, her blood counts have stabilized, but not in the range of a normal person as of yet. Delaney still is not eating on her own, walking is a big challenge and needs constant support. All the while she continues to fight a c-diff infection. On the other hand her hair is slowly growing back, peach fuzz is what we call it, it is cute and she talks about it all the time. She tells us she is all better and not sick, she is very animated in conversation and happy. Delaney enjoys small walks outside and playing in the backyard. Even with her current deficits she is more active and happy then before her brain operation. With that all said Mommy and Daddy know there is a slight lull in her treatment, masking the start of Delaney's radiation treatment starting this coming Monday, March 24, where Delaney will begin a new chapter in her story on radiation. Delaney and the family have been very fortunate that she has been so successful in her chemotherapy treatment, a.k.a. FIERCE, by completing treatment, and taking the full doses of chemotherapy. Mommy and Daddy will be by her side to help, Team Delaney at her back, as she makes her FIERCE push down the home stretch these next 5 1/2 grueling weeks. Considering all Delany has been through she is doing great. It truly, truly takes a HUGE team, full of prayers, love, positive thoughts, and support to help Delaney fight as fiercely as she can. We cannot thank Team Delany enough. But thank you. Delaney will be enjoying these next five days, with her brother and family as she once again ramps to fight fiercely. Thank you for all the prayers, love and support. As always...... GO TEAM DELANEY!!!

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

Monday, March 17, 2014

Weekend Update…

Friday Delaney had a CAT scan to mirror the MRI that was taken this past week. This is done so they can do the focal radiation and it can be extremely accurate on the location. While she was sedated Friday they made a mesh mask of her face so her head will be stable and there is no movement. This is important so while she is sedated her head will not move and cause the focal radiation to drift. Delaney’s doctors have set up a treatment plan so that she is ready to go on Monday March 24th and it will last for 5 ½ weeks with daily trips to Oakland. Delaney is still not eating on her own, we are hoping she will soon, but that may not start until after focal radiation. Delaney has been very active and is trying to do more which is fantastic but it does keep Mommy and Daddy on their toes. Delaney is playing more and loves to be outside but we still need to be extremely cautious of germs and virus so her time is limited outside. This is not something parents usually have to tell their 2 ½ year old but we must limit outside contact to give her the best health possible right now. Delaney is sleeping through out the night and still getting her nightly feeds. She is in very great spirits and happy and we are all trying to enjoy this upcoming week at home before we start the daily trips to OAK next Monday.

Thank you for all your love, support, and prayers.

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

Thursday, March 13, 2014

Delaney fights on...

The past 3 days have been very busy for Delaney, Mommy and Daddy. Delaney had her MRI on Monday, yesterday an appointment with the radio oncologist and today she had an appointment with her neuro oncologist. Although her MRI scan came back all clear, and everyone is relieved and excited. Delaney will still have radiation. Again radiation has come strongly recommended from 3 different and separate sources, this is because radiation is very effective at eliminating any cancer cells that may be left behind that chemotherapy did not get. Delaney will not get much of a break as we had hoped, instead she will have to buckle up, and fiercely push forward for yet another 5 1/2 weeks of radiation 5 days a week just over 25 radiation sessions. She will be sedated each time. There is possible start date for March 24th a little over a week away. The focal radiation she will receive will be only at the original tumor site, on the cerebellum and she will not have full brain and spin radiation as this would have far more and drastic side effects that no one wants. The immediate side effect for Delaney will be fatigue, headache, nausea, swelling at radiation site, radiation burns, and diminished hearing. There is a chance that her hair may not grow back at all at the site of radiation. Cognitively she will not be effected because it is focal to the site of the tumor and she will be able to live a full independent life. Which is a big relief for Mommy and Daddy. On Fierce Friday, Delaney will be sedated, receive a CAT scan to pair up with the MRI, and a mold for her head so she will not be able to move by accident when under sedation and receiving radiation. Delaney is doing amazing, happy, full of energy, fierce and yet still recovering. We have and will continue to enjoy this time together as a family before Delaney's final push down the home stretch completing her treatment. But the unimaginable whirl wind of feelings and emotions are building for Mommy and Daddy as we head in disbelief for more treatment. But as well all have witnessed, Delaney is Fierce, rising to conquer each challenge. Thank you for all the prayers, love and support. As always..... GO TEAM DELANEY!!!!

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

Monday, March 10, 2014

ALL CLEAR!!!! ALL CLEAR!!!!

Delaney's neuro oncologist called Mommy and Daddy to give us beautiful news that Delaney's full brain and spine MRI scan is all clear with no changes!!! Bringing tears to our eyes. Delaney, Mommy and Daddy have been waiting on pins and needles all day, at times the weight of stress, unbearable. Delaney was sedated at 8am and her MRI was underway and it took 2 hours to complete. Delaney is in great spirits, happy, full of life and love!! Thank you for all the prayers, love and support. As always.... GO TEAM DELANEY!!!

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

Saturday, March 8, 2014

Friday Night Update...

Delaney was having a great day today and was being very FIERCE on FIERCE FRIDAY. Delaney had a blood draw and her counts are stable and slowly creeping up. She is getting more energy as her counts increase and is very happy being at home with her little brother and family. She is still not drinking or eating on own but was full of energy. Daddy and Mommy were able to catch up on enjoying time with Delaney more that she seems to be getting healthier. Delaney is now telling us that her hair will grow back again and she thinks it will grow back pink which was very cute to hear her say. She is such a fighter and in great spirits with the Team right beside her.

Coming this Monday Delaney will have her 3rd MRI scanning of the full brain and spine to make sure there is no markers indicating cancer. This is a very unbearable stress to think about as the past 6 months Delaney and the family have experienced thing that we never thought she would face. We try to continue and take things one day at a time as she fights but it is something we are very nervous about for Delaney. We can't thank everyone enough for opening their hearts and support for Delaney these past 6 months as we continue in this journey with the Team every step of the way.

Thank you for all the love, support, and prayers. Words cannot describe how thankful we are for all the support.

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

Next Steps..

Delaney, Mommy and Daddy met with her neurologist today and discussed many things at length. Delaney has fought fiercely through 6 rounds of chemotherapy and come out on top. She completed it in full, no chemotherapy doses were adjusted, she was not late for any cycle and most important she finished all the cycles. However Delaney's FIERCE FIGHT will continue.

As young parents we have been thrown into unimaginable circumstances, and decisions that no parent should have to make or experience, ever. Agree, or disagree with her treatment, there are strict protocols for a complete treatment, time must not be wasted in these circumstances, remember this is Delaney's story. This is a reality we live with each day. Mommy and Daddy fight fiercely at her side, with Team Delaney at her back, to achieve cure. That said, one effective tool that has not been used yet, that is part of the protocol for her diagnosis is focal radiation. That treatment will start in a month or so, just as Delaney is about to be an older sister for the 2nd time. Delaney was diagnosed when Mommy was 9 weeks pregnant with our 3rd child. Mommy and Daddy planned the kids close together. Treatment will be for 5 1/2 weeks, sedation and then radiation, 5 days a week over 15 minutes. Mommy and Daddy will be stretched thin, 3 children under the age of 3 one in a fierce fight. What wouldn't we do for our child.

As Team Delaney has walked with her through her story, we ask that you continue to walk with her, steadfast, keeping her in your prayers, thoughts, heart and with positive energy. It is truly felt. Thank you. Let's witness as Delaney she fiercely gives cancer both barrels. Thank you for all the prayers, love and support. As always.... GO TEAM DELANEY!!!

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

Fierce Update....

It is a great page Delaney added to her story today. Hands down this has been Delaney's best day, in 6 months. There were lots of smiles, kisses, love, hugs and energy coming from Delaney. She tried to walk a lot, try food, and play with brother. Delaney even got out for a small walk today for fresh air. And I think Mommy and Daddy are going to leave it at that, it was simply just a great day. Thank you for all the prayers, love and support. As always... GO TEAM DELANEY!!

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

Tuesday, March 4, 2014

Tuesday Morning Update....

It has been a little over two week now that Delaney has been sick. She has fought fiercely and it is safe to say cycle 6 of her chemotherapy treatment is losing its grip and finally letting go, Delaney is on the mend, slowly. Of all the chemotherapy cycles Delaney has had cycle 6 held nothing back, nor did Delaney. Delaney was neutropenic for nearly 2 weeks, she had mucositis, nausea, vomiting, diarrhea, she was admitted for neutropenia with fever and currently has c-diff. Yet she smiles, that is fierce. Today is the first day in over 2 weeks Delaney, Mommy and Daddy can stop and take a breath. It has been the most challenging and trying time for us all, feeling as though we are on the verge of breaking, and then one look at Delaney and our love for her anchors us back in. Delaney had a blood draw this morning, her counts are on the rise, she is resting better, healing. Mommy talked to the BMT doctor today, and discussed follow up appointments for Delaney. As it stands, Delaney will be immunosuppressed for the next 6 months or longer, because of her bone marrow transplant. She has new bone marrow. About the only thing she can fight off is the cold. All of her vaccinations from birth have been wiped clean. And she does not have any T-Cells that can fight off infections. Meaning she can not go to crowded outside events, other homes, or be around others who may be sick or be a carrier of some sort. Until her T-cells are recovered and she can receive immunizations she will continue to stay mainly at home. Play dates, dinner downtown, movies at the theater, and much more a 2 1/2 year old would like to do will have to wait, for her safety and recovery. Delaney has an appointment on Wednesday to discuss her progress, and any further treatment. Many see all the things the brain operation, and chemotherapy have taken away from Delaney, but it is more about what Delaney has given up, in order to get better and win her battle. Thank you for all the prayers, love and support. As always... GO TEAM DELANEY!!!!

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