Meet Bethany!

This month's Cancer Cutie is more gorgeous than cute. :) Bethany is a talented 16 year old who was recently diagnosed with Hodgin Lymphoma. We feel lucky to share her story here! Her adoring mom Jonette shares the start of their journey with cancer below...

On January 23^rd, 16-year-old Bethany went to a routine Dr.'s appointment.  Two hours later, after blood work and an x-ray, we were sitting in Kneaders having dinner when the phone rang.  It was 7 p.m.  Not good news.  Hodgkin Lymphoma - a large cancerous mass behind Bethany’s sternum.  I looked at her - a typical teenager - large blue eyes, long eyelashes she is always complimented on, thick hair she has been growing out for over 3 years, delicate fingers that are perfect for playing her harp and creating the art she loves.  Bethany, who is sensitive to other’s suffering, who just started a job as a private aide to an autistic boy, who always strives for excellence in school and in every endeavor. 

The next day we were up at Primary Children's Hospital in the oncology ward talking about Hodgkin Lymphoma, Stage II B. Tears and sleepless nights followed, and an overwhelming grief over the abrupt change of "life as Bethany (and each of us) knew it" and the fear of the unknown road ahead.  It was too sudden to process.  One day you're on one side of the door; the next day, you're on the other.  And when CANCER happens, it happens to the whole family.

Bethany’s family includes her mother, a single-mom completing her last class in communications disorders and a speech teacher in the Alpine School District, her older sister Laurel (20) who is home from college and awaiting her March 18th MTC date, with a call to Puebla Mexico, her younger brother (13) who loves soccer and hockey, her grandparents who live with her, and her dad and extended family in Seattle.

A blur of appointments, consultations, tests and procedures followed the initial consultation.  Friday, January 23, Bethanyreturned to PCH for four surgical procedures: the placement of a port, a lymph node removal for a biopsy, a bone marrow aspiration and bone marrow biopsy in each hip.  Her sister Laurel stayed by Bethany's and my side for the 14-hour hospital stay.  It was traumatic - the environment, seeing her sister pre- and post-op, trying to absorb the reality of this all.  Recovery followed for a week at home.

And now today, we walked through the familiar lobby and up to the 4th floor. Oncology.  Cancer.  The words still seem unreal.  Washed and disinfected, we were admitted into the inpatient ward.  I sit here watching as the first chemotherapy drug is being administered - Vincristine.  Today, her regimen is 6 powerful toxins, toxic enough that the nurse is draped in blue plastic with purple gloves.  Bethany looks so healthy - a pink tint on her cheeks, long eyelashes and hair, a coordinating outfit -- she looks like she's going off to a day at High School. 

Only this isn’t High School.  This is a battlefield.  For Bethany, who returned to High School for only one day, the oh so common angst of others students - whether they have a date for the upcoming dance or whether they were having a bad-hair day -- seemed trivial.  No longer just a high school student, Bethany is beginning an education of another form.  Life behind that door.

Bethany will do four cycles of chemotherapy, possibly more.  Radiation may follow.  We don’t know the long-range plan yet.  For all of us, this is just the beginning.  We are on the other side of the door. But that other side is not all fear and darkness and pain.  There is light -- the light of other cancer patients and their families, the light of family and friends who willingly go through that door with you, the light of compassionate medical personnel, and a host of other supporters. What is unknown to you, until you have to walk through that door, is that on the other side is a community.  A community bound by a common thread - cancer.  Hope, spirit, bravery, and knowledge reside there.  And now Bethany has become one of the brave, or as her dear friend, Trish Howard, (who is fighting her own Hodgkin battle) says, you are one of the SURVIVORS.  For every day you battle this disease, you are a survivor.

Thank you for reading Bethany's story! That last paragraph that Jonette wrote touched us so deeply. We're grateful to connect with Bethany, her family, and YOU! If you'd like to donate to Bethany, go HERE. We're grateful for your support. xoxo

PS - We adore Millie's Princess Foundation for matching all donations! They are beyond generous. And we adore Rhonna DESIGNS for teaming up with us to share Bethany's story!

Meet Delaney!

We'd like you to meet Delaney, this month's cancer cutie! This beautiful little girl has brain cancer and is currently undergoing treatment...thank you for taking the time to read her story, shared by her loving uncle.

///

On September 10th, 2013, the darling 2 1/2 year old Delaney Newton’s life was changed, along with her family’s, when the fight against brain cancer began. Delaney was diagnosed with a brain tumor in Oakland, California. Just two days later, on September 12th, she endured a 12-hour brain surgery by a team of 12 doctors and nurses at Oakland's Kaiser Hospital, the same hospital she was diagnosed.

Those 12 hours were the longest 12 hours of the family’s life as they waited for the surgery to end and for the doctors to give the results. As the family waited they were surrounded by loved ones the entire time, pulling for Delaney. Family and friends crowded the waiting area along with her Father Merlin’s Firefighter crew--from Station 3 in Livermore/Pleasanton, CA. After a long 12 hours the doctors were able to remove the entire tumor mass in the lower back part of her brain. As we heard the news there were so many emotions and there wasn’t a dry eye in the room. “How do you thank the doctors who have given your child more life to live?” Merlin asked. The simple answer is you can’t express in words the joy everyone felt after the previous two days had completely scared and terrified everyone of the unknown. The doctors were very pleased with the outcome but also explained that the next year was going to be extremely difficult with 6 rounds of chemotherapy along with physical therapy because Delaney will need to learn to walk again. The subsequent pathology report revealed that the tumor was indeed cancerous. Delaney spent the next month in the hospital recovering from her brain surgery, with her parents by her side every moment of the day. As Delaney was in the hospital recovering, her parents posted daily quotes above her bed. One stuck with her and began her motto for the battle: “And though she be but little, she is fierce!” That quote is now the back bone of what we call Team Delaney. The entire community and surrounding community rallied around Delaney in support and love. There are now over 2700 shirts, hoodies, and long sleeves in communities across the country with Team Delaney on the front with her heart logo, her quote on the back, and of course in her favorite color hot pink.

Delaney then started the journey of chemotherapy, with a minimum of 6 rounds planned. The first 3 rounds of chemotherapy were done at Oakland’s Kaiser. Even as it was extremely hard and difficult, the treatment was going in the right direction. MRI and Lumbar Puncture came back negative after 3 rounds for any signs of cancer cells. She would then finish up the next 3 rounds at UCSF due to the increase in chemotherapy drug and the stem cells she had harvested that will be reintroduced after each round. Today, she has completed 5 rounds of chemotherapy. It has been extremely hard on her parents and Delaney, but she continues to be a happy 2 ½ year old and smiles everyday and lives in the moment. She loves to go home and play with her little brother (who turned 1 year old the day she was admitted to the hospital) after each round of chemo. Delaney has endured more then most people will ever endure in their lifetime. To date she has had:

September 10th Diagnosed with brain tumor

September 12 brain operation to remove tumor

56 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)

19 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

8 Blood transfusions

30 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

SHE IS SO FIERCE!

Delaney is a true fighter and always makes the best of everyday. She has her ups and downs but overall she is a very happy 2 ½ year old. Her parents Merlin and Janice, and little brother Merlin III (who we call Mini Merlin) have been blessed by the out pouring of support that has started in their community. Janice was also 9 weeks pregnant with their third child the day Delaney was diagnosed. Delaney is a Livermore, CA resident just like her parents who grew up there. They call Livermore their home, community, and workplace. The support of the community, family, friends, and complete strangers have allowed them to stay at Delaney’s side every single day the past 5 months now. Delaney needs constant care and her parents are right there beside her--comforting her, changing her broviac, taking blood samples to hospital twice a week, administering over 13 drugs daily at certain times and trying to make her as comfortable as possible. It is no easy task for those who have experienced what Delaney is going through and the challenge it is to take care of her but it is what must be done to give her the best possible outcome.

As Delaney continues her fight we can’t help but look back. We never knew what was in store for Delaney and the family. Our world and our families’ worlds were changed that September day as Delaney's fight began. We cannot help but think of the times before cancer, where Delaney has come these past months, and who she will eventually become with this life experience. Delaney is destined to do great things in this journey we call Life, which is far from over. We cannot thank everyone enough who has helped Delaney and the family with gifts, donations, time, energy, babysitting, mowing lawns, sending prayers, positive thoughts, sporting shirts, bracelets, and so much more. We know one day Delaney and Team Delaney will give all this back to the community and families who have given Delaney and the family the ability to be by her side every hour of every day these past 5 months and counting.

///

If you'd like to keep up with Team Delaney, you can go "like" their Facebook here. :)

Guest Post: "You are SEW loved!" (DIY Valentine)

Valentine's Day is coming up! And we're excited to share a fun valentine you can make with your little ones. The details (including the printables!) are on a guest post over at Sweet Little Peanut--a charming blog filled with all sorts of lovely things for you mamas and your little peanuts. You can make these "You are 'sew' loved!" valentines with your kids at home, at school, at a Valentine's party, or the like! xo  

Meet LJ!

We'd like to introduce you to LJ, this month's Cancer Cutie. This sweet boy is fighting leukemia and has been defying the odds since he was diagnosed at 5 years old. He and his family (his younger brother who lovingly donated his bone marrow to LJ) have been on this journey for almost 3 years, and you can read his story below, written by his mother.

{ Dad, brother, LJ, Mom }

The story of our family life forever changed in February 2011 when our oldest son, LJ, who was 5 at the time, was diagnosed with Pre-B cell acute lymphoblastic leukemia (ALL). After a few weeks of leg pain (that we just brushed off as “growing pains”), night sweats (which we just brushed off as normal since his dad does the same thing), and a significant change in his otherwise friendly and polite demeanor, we realized something was really wrong.

His pediatrician ordered X-rays of his back and legs and bloodwork to attempt to find a clear-cut answer for his pain. His complete blood count (CBC) came back normal, but his protein level was a tad elevated. His X-ray revealed a slight slippage of a disc in his lumbar spine. The orthopedic surgeon concluded that he may have a spinal infection and he needed to be seen at the hospital right away because if it were as he suspected, it would require IV antibiotics over a period of about 3 weeks.  We requested to go to St. Louis Children’s, since LJ’s grandma works there, and after a little coordination we were on our way.

We were to go to the emergency room prior to admission. Grandma was waiting for LJ and me when we got there, and we were soon taken back to a room where all the tests done earlier were repeated. Once the results were back, the doctor came in and asked us if it was okay if someone sat with LJ while she talked to us elsewhere (by this point, LJ’s dad had made it to the hospital). We already knew something was wrong when she asked us to leave his side, but our worries were solidified when she took us to a “grief room” complete with Kleenex, a phone, and comfortable couches. The doctor explained that on manual examination of his blood, he had abnormal appearing white blood cells consistent with leukemia (although being a Friday afternoon, pathology was unavailable until Monday to give a definitive result). This moment will always be remembered as the day our lives changed forever, and suddenly we were wishing for a “simple” spinal infection.

On Monday pathology confirmed the type of leukemia and noted that 69% of his white blood cells were leukemic. LJ immediately began treatment. The road was long, we knew, but LJ tolerated everything so well sometimes it was hard to remember that he had cancer. Deep down, even after over two years of treatment, LJ’s dad and I were concerned that he was not “sick enough.” His blood counts were more that of a non-cancer patient’s every month, and his chemotherapy dosages were constantly being increased to try to lower his blood counts. I silenced my inner concerns by telling myself that his lab work never showed any leukemic cells.

In June 2013, LJ enjoyed a week at his favorite place, Camp Rainbow, a weeklong camp for kids with blood diseases. After returning he kept complaining of headaches that were not being relieved with pain medication. He was admitted to the hospital, where they performed a diagnostic lumbar puncture to rule out relapse in his cerebrospinal fluid. The results came back clear, and we breathed a sigh of relief. The doctors decided to treat him for a tick-borne illness as a precaution, since he had been at camp and two ticks were found on him (although his bloodwork was negative for any specific tick-borne illnesses). His headaches seemed to resolve with this treatment, and we were able to return home.

The following week we went for a routine clinic visit and lumbar puncture. While LJ was sleeping after his procedure, a nurse came and notified me that his doctor wanted to speak to me. She asked if I wanted her to call my mom (who was working that day). I said yes, and followed her to yet another “grief room.” I knew at this point, that our instincts had been correct, and despite past examinations and diagnostic tests, LJ was sick again. I immediately called my husband, who was 40 minutes away, and he asked me to tell the doctors to wait until he got there. I told him there was no way I could wait 40 minutes after they had already put me next to another box of Kleenex. My mom came upstairs, followed shortly by the doctors, and we were notified that LJ had relapsed in his central nervous system. Again, this was on a Friday, so on Monday we had to return for a bone marrow biopsy which ended up revealing the cancer was back in the bone marrow also. Our long road suddenly seemed to split, and now we didn’t know which way to go.

We took the doctors advice, which was to prepare for a bone marrow transplant. This, we were told, would be his best chance of achieving a “cure.” I use the word cure lightly, because as any family who has travelled the pediatric cancer road knows, the 80% cure rate advertised is just a mask for the reality of what it actually is, and that is it is merely a 5-year survival rate. After a few more weeks of more intense chemotherapy, cranial radiation, and numerous diagnostic tests, LJ was finally ready for transplant.

LJ was admitted to the bone marrow unit on Friday the 13^th of September, and he had a new central venous catheter placed. He was administered even more extremely toxic chemotherapy to significantly decrease his white blood cell count, followed by total body radiation to completely eliminate his own bone marrow. On Tuesday the 17^th of September, LJ received his new bone marrow, lovingly donated to him by his 6-year old brother, Jonah.

We were lucky, only 25% of bone marrow transplant patients have a sibling match. This knowledge significantly increased our confidence in our choice to go along with transplant. It felt like fate. As I type this, LJ is currently at day +46 post-transplant, and doing well. We spent 20 days on the bone marrow unit, when we were expecting 5-7 weeks. In fact, had we stayed the full 7 weeks, we would still be there now. Does it worry us that, once again, he is defying the odds and doing better than traditionally expected? Yes, always. When LJ gets a cough, fever, etc… it will never be just that, EVER (I don’t care if he is 30-years old when it happens)! The difference this time is that I don’t have that gut feeling that something is about to go incredibly wrong.   

***UPDATE***

Results from October 24, 2013 show complete donor cell engraftment! Incredible! :)

Festive Eats: Breakfast, Snack, and Dessert!

Who likes to play with their food? ;) The holidays and having little ones around definitely calls for festive eats! First up, breakfast:

BREAKFAST: A big thank you to pinterest for this one! Who can resist a little Rudolph the Red-nosed pancake for breakfast? Two flapjacks for the head, chocolate chips or blueberries for the eyes, a raspberry (or red M&M or strawberry) for the nose, and bacon for the antlers and you're set!

Next, SNACK TIME: a healthy holiday treat! We've seen fruit and vegetable Christmas trees before, served at holiday parties, and they're always a big hit. But why not make a simple version that our kiddos can take part in making? We did, and it was a hit--even for our little party of 2 the other afternoon! The details are in a guest post over on the lovely blog Dear Lindsay--go here to check it out! Plus it works as an activity, snack time, and meal prep!

And top it off with DESSERT: Whether it's for your own family, or a plate for your neighbors, there's nothing like a festive-shaped cookies! And gingerbread cookies are sure to make your kitchen smell heavenly and your belly happy. Ours the other day were a bit on the dry side (hence the extra-long soak in milk;) but this recipe for gingerbread men on Jenny Evans: Gatherings blog is tried and true! Then I just melted some white chocolate and piped it on for the "frosting".

Happy Holidays everyone!

Care to share some of your favorite festive eats??

The Heart of a True Princess/Prince

Feel free to save and print the Princess/Prince images as a "thank you" for supporting Rae. xo

You never know the places you'll find inspiration. When I saw a commercial on the Disney Junior channel almost a year ago, I couldn't help but record it to write down what was said--and then created the print above. :) It was a young girl saying simple words, but they were so powerful. Imagine if every girl (and boy) could have similar feelings--especially that "having big dreams is important, but having a big heart is more important." The heart of a true princess or a prince is one that is kind to others and knows that they can make a difference--that every little, good deed makes all the difference. 

The sweet princess in the foreground of this photo is Raenalynn, this month's Cancer Cutie. We are so grateful for those who have been able to donate to Rae and her family! Thank you for your big hearts. And wonderful news! Millie's Princess Foundation is going to be MATCHING donations AGAIN, up to $2500 which could become $5000, for sweet Rae!!! Their generosity is inspiring! So let's do this, together. We can do little things that will make a big different in the lives of Rae and her family. 

For those that want to keep up with the incredible Millie's Princess Foundation...go to their site here, Facebook page here, and Instagram here. :)

And here's a little reminder of a couple products on PS I Adore You that are benefiting Raenalynn and other family's dealing with cancer! :) First, there's the darling Alphabet Coloring Book for just $5, with all proceeds going to Rae! You can also get Cancer Fighting Swords, reminding our kids that together we can fight for a cause, and a portion goes to helping families who are battling cancer. Again thank you for your support friends!

***

The prints below are yours for free, as a "thank you" for supporting our cause and donating to families like Raenalynn's--you can do so here.  Cheers to encouraging the princesses and princes in our lives to be brave and have big hearts that do good! xo

(This second Princess print is just to match the new Prince one) 

DIY Wooden Plaque Chalkboard

Finally jumping on the chalkboard-paint train! And I'm a fan. :) I love the sleek yet relaxed look of chalkboard, and combined with a rustic wood plaque, I couldn't resist. Thought I'd share a little DIY project using it. The holidays get me in a crafty mood, anyone the same?  

The supplies you'll need are a wood plaque (I found mine at Joann Fabric & Craft store, but here is a similar one), chalkboard paint, paint brush, pencil, and chalk. That's it! :) First thing you'll want to do is use a pencil to slightly trace a line along the outer edge that will make painting easier.

 Then paint 3 thin, even layers of chalkboard paint, letting them dry in between layer (I waited a couple hours before painting each one). Then let the last layer dry and set for a full day.

You'll want to season the chalkboard by rubbing the side of a piece of chalk over the whole chalkboard surface evenly, then erase (I juse use a paper towel and it words great, and I'd do it near a garbage can, there's lots of dust). That's so when you write/draw for the first time it doesn't leave marks that won't completely erase.

And ta-da!! Simple as that. :)

It was fun making it, and has been even more fun using it! I've enjoyed writing messages, making lists, and the best is watching my little boy learn to trace his letters on the chalkboard. :) One more part I forgot to mention! If you want to hang yours up on the wall, we're big fans of Command Picture Hanging Strips and they worked great! Just be sure to use a few. And, while I loved making ours, if you want skip the DIY part, you can head over to the lovely The Flybird etsy shop and buy your own wooden chalkboard!

Hope everyone is having a wonderful December!