Meet Taleah

Meet this months cancer cutie, the gorgeous Taleah! She is such a beauty inside and out and we pray every day this sweet girl will kick cancers butt for the 2nd time!! Read her story below. XOXO

Taleah was diagnosed with Acute Lymphoblastic Leukemia on August 26th, 2011. She completed 2 1/2 years of treatment and she was cancer free for 4 months. As of March 24th, 2014 the cancer has returned. She will be fighting for her life, for a second time. 

Taleah comes from a big family and is the oldest sister to a three year old brother and to 4 month old twin sister and brother. She loves being a cheerleader and can bust a move like nobodies business! 

I guess you could say that a mother's intuition means something. Taleah had been acting "off" for the last week. I had a terrible feeling going into our upcoming appointment at PCMC. I even shared that with my dad and I don't think that he liked hearing that from me. We headed to PCMC (Friday), did the routine "stuff" and the labs showed that her platelets had dropped a little. Dr. Barnette didn't seem concerned and even looked under the microscope and had a great explanation for it. 

Taleah even rang the bell because she was cancer free! I still left feeling a little uneasy and couldn't figure out why. Now I know. She started fevering the following Thursday and it continued and hasn't stopped. I began obsessing over ALL information, dropping platelets, contacted other cancer moms, and couldn't get it out of my mind. I even texted our pediatrician on Saturday asking if I should get her labs drawn again. He wanted to wait until Monday, which I am glad that we did. We were all thinking/hoping it could be a virus that was causing the drop in platelets (that is a sign of relapse... along with a jump in WBS which hers had done as well). I just knew in my gut that something wasn't right. Labs came and I kept checking for the results. I honestly couldn't function. My MIL had to take my kids because I made myself physically sick over it. After a few phone calls and lots of tears, it was confirmed. We were expected at PCMC the next morning at 8am. The drive was long and trying to break the news to her was devastating. She became very quiet and wouldn't talk about it. That was one of the hardest things I have had to do. PCMC wanted to do their own testing to confirm it. There was a small chance that it could be a crazy virus but I knew it wasn't. Of course I hoped for that, but hearing the confirmation again was a giant blow to my stomach. Watching Taleah hear it all just about ripped my heart in half because this time she has a better idea of what is to come. We continued with an x-ray, labs, and making her comfortable. Her blood had about 50% leukemia cells. We would await the procedures to come the next day to have a better idea of what we were dealing with. I am having a whirlwind of emotions. I am angry, so sad for Taleah, sad for my other kids, mad, heartbroken and a little hopeful. It is a lot harder to feel "hopeful" this time when the odds were so good before and she was in the 8% that relapse. How can this be?! It is not anything that I ever hoped for and didn't "see it coming" until a week ago.

The first month is critical! We need to get her body into remission after the first 28 days. This will give us the most hope. IF that happens, we will have finished one round with a week at home to follow. We would have 2 more rounds simlar to that. All of which will be done at PCMC. IF all goes according, it would mean preparing her for a bone marrow transplant (which would happen after the 2-3 months of inpt chemo). We will be testing our 3 kids this week to see if they are a match for sweet Taleah. A sibling match would be the best case scenario (the babies would have to be a certain weight as well). It wouldn't be dangerous for them to be her donor. We also have Tait's cord blood that we could test as well. Sloan's isn't viable because his was wrapped around his neck and we had to cut it at birth. The transplant would be approx 35-60 days inpt and then staying close to PCMC for another 40-50 days after that. It is a long road, a scary road and we are praying that all can go accordingly. We appreciate all of the love and support that has already been offered on our behalf.

To donate to Taleah go to

Meet PIA!

We would like you to meet this months cancer cutie, PIA! She has stolen our hearts and we know you will fall in love with her too. Pia was originally diagnosed with Transient Myeloproliferative Leukemia, a rare cancer that only affects children with Down syndrome. She beat TMD and a couple months later was diagnosed with AML cancer! Pia, you kicked cancer's butt once we know you can do it again!

Here is Pia's story told by her beautiful mother:

It was December.  We got a call early Sunday morning to tell us that Pia was coming.  We went to church.  We came home, and tried to eat.  We paced.  We watched football, and cleaned the house, but mostly we paced.

At 4:00 we got another call.  She’d been born.  She was healthy. And she was waiting for us at the hospital.

We met Pia Therese that day, and fell in love with her.  She was beautiful.  And she was, from that moment forward, our daughter.

Pia is our second child.  Like her brother, she’s adopted.  And like her brother, Pia was born with trisomy-21, Down syndrome. 

We took her home on Tuesday.  She was little, and pink, and perfect.  On Friday morning we took her to the doctor.  She was weighed, and measured, and poked.  She giggled and fluttered her eyes.

On Friday afternoon, we got another call.  An ominous call. We needed to go back to the doctor’s.  Something was wrong. 

Things started happening fast.  We went from the doctors to the hospital, quickly, quietly, trying to process what we’d been told.  We sat quietly, but the word “leukemia” echoed in our ears.

Pia had something called Transient Myeloproliferative Leukemia.  A rare cancer that only affected children with Down syndrome.  The prognosis was good.  Just three weeks later, and with no chemo, she left the hospital.  2 months after that, Pia was cancer free.

Until December.  Pia was about to turn one.  We were planning a birthday party.  But after a trip to the doctor for a lingering cold, the phone rang.  We needed to go to the hospital.  Right away.

Four hours later, we heard the word again. Leukemia.  Pia Therese, our little baby girl, has Acute Myeloid Leukemia.  The next day, she began chemotherapy.

Pia has Down syndrome, so she’s not without challenges.  But she is an extraordinary child.  She never stops moving.  Or smiling.  She climbs, and tugs, and throws everything she can.  And her smile is the brightest we’ve ever seen.  She lights up when she sees a familiar face, or makes a new friend.

She’s had three rounds of chemo.  She’ll have three more.  Each round means a month in the hospital, isolated from her brother, spending time nauseous and not sleeping.  But Pia’s joy is unflappable.  She loves each day, and each person, with all her heart.  Her optimism is a source of strength for us.

Our faith tells us that good can come from suffering—that God can use our suffering to achieve great things.  We’ve always believed this.  But Pia has proven it true.  Her life—her beautiful, joyful, challenging life—has touched so many.  But she’s touched no one more than us.

Our daughter came to us with a phone call.  So did cancer.  Twice.  But every day, we thank God for those phone calls—for Pia, and for everyway she’s showered us with love.    

Meet Avah!

April's Cancer Cutie is 6 years old and as cute as they come. And she is a fighter! With a rare case of Stage-3 Pediatric Melanoma skin cancer, Avah's story is shared below by her loving mom Joanna. 

First let me start off by telling you a little bit about our sweet Avah. She is such a blessing in our lives. She completed our family when she was born and she has brought so much joy to all of us. She adores her 2 older sisters, and she loves playing with them. She has always been a momma's girl, she was and still is attatched to my hip, my little sidekick. She loves her daddy and gets so excited everytime he walks into the room. He is a super hero in her eyes. She has always been happy and smiling. Even through all of her trials she has always kept such a happy and positive attitude. She is the strongest person I know and she is such an amazing example to me and to anyone who has the privilege of knowing her.
When Avah was 3 years old I noticed a mole on her scalp while I was fixing her hair. It looked like a normal mole, but I called her pediatrician to set up an appointment just to be sure. He looked at and said that it was a normal mole, but that we'd keep an eye on it. I always looked at it every day when I did her hair. It never changed. Every Doctor appointment she had, they made sure to look at it. 2 years passed, her pediatrician retired and she now had a new one. One day when we were at the park she was itching her mole. By this time she was almost 6 years old. I looked at the mole and sure enough it looked different. It was darker than it used to be. I don't know if it just suddenly changed or if it did so slowly over time that I didn't notice. Either way, I knew it looked different. It was also itching her, which was weird. She had never complained of it before. I called her pediatrician that day.
We went in to see the doctor the next day. I told her what was going on and she looked up Ava's history. She said that anytime a mole changes or starts itching that it should come off and be sent off for testing. She assured me that it was nothing to worry about since Avah was so young. She referred us to a plastic surgeon in town to do the removal of the mole. When we met with him he told me that the chances of it being anything other than a mole were slim to none and that it would probably be fine to just leave the mole there. I insisted that he remove it.
A few days after her 6th birthday started a roller coaster of good news and bad news, and a number of surgeries to remove the cancerous skin. Through out it all I wanted to be well-educated on pediatric melanoma and did all the research I could on it. I learned it was even more rare than I imagined. And the pediatric dermatologist told us at one point that Avah's melanoma looked like one that had come off of a 60 year old, it was very active and very aggressive. We were so grateful she was in good hands with the amazing doctors at PCH. I continued to do did more research and we talked more with Avah and her sisters. Avah remained the brave little girl she is, so did her amazing sisters.
On November, 7th 2013 we recieved the phone call that forever changed our lives. The biopsy of the sentinal lymph node came back positive for melanoma. The cancer had spread! They wanted to see us in the office a few days later to discuss things further and to talk about treatment options. This news took me by complete shock. I had convinced myself that it would be negative. I cried for a long time in private, along with my husband. After I felt strong enough we broke the news to all three of our girls. They all took it well, especially little Avah. They all had so many questions of course. We answered them the best we could. I had to be strong, I could not let them, especially Avah see me cry. I could not let them know how utterly terrified I was and still am. Strength, love, and encouragement is what I decided to show them.
 The few days before the next appointment were the longest of my life! We had no idea what to expect. During these days of waiting I received a call from the pediatric surgeon's office. His secretary said that the doctor wanted to see us in his office right after we talked to the oncologist. What? Why? She wasn't due for her follow up for another week! I was sick to my stomach. They thought my baby needed another surgery. I just knew it. I didn't understand any of it. I began to make a list of questions I had for both doctors. I added to the list whenever I thought of a new question or when friends or family had an idea for one. I tried my hardest to stay busy. I made sure that Avah felt comfortable talking about it and asking questions if she needed to.
The day of the appointments finally came. Her oncologist diagnosed Avah with stage 3 Melanoma. He told us that her chances of beating this are 75%. Of course, he is basing that on Adult statistics with melanoma since it is so rare for children. He talked to us about treatment--which would be a total of 1 year. The first 4 weeks of treatment would be in the hospital or clinic through infusion. After that, they would teach us how to give her injections of the medication, which would be done 3 days a week for 11 more months. My first question after he talked about treatment was, "What are the side effects of this medication?" He told me that the most common side effects are fever, nausea, chills, headaches, fatigue, any flu like symtoms. Some other side effects are hair thinning, vomiting, liver damage, and many other things. I felt so overwhelmed. Why did my baby have to go through this? He also told us that another surgery would need to be done. We had prepared ourselves for that, so it didn't surprise me to hear him say it.
When we left the appointment we had to remain strong for Avah. She will beat this! She is the strongest kid I know, she's is a fighter! We had a talk with Avah before we headed over to the surgeon's office. We made sure she understood what he would be talking to us about. She was sad that she would need another surgery. She didn't understand why. How do you explain something so complicated to a child? It's something that even I have a hard time wrapping my head around. Children should not have to go through things like this.
During the months of November and December she had the surgery to get the lymph nodes in her neck removed and examined--they found 1 out of 24 that tested positive for melanoma. They hoped for 0, but 1 was the next best thing. Avah could beat this, and she would! We were going to make sure of it.
The next procedure was having a picc line put in so she could get treatment, and then she was released to go home on the 23rd of December. We'd be home together for Christmas! It is so amazing how a community can come together in times like this. We were overwhelmed with people coming over with gifts for the girls and for us. People brought us so many gifts, they brought meals, the sang Christmas carols to us. It warmed my heart. Everyone wanted us to know that we weren't in this alone, they were all behind us. That meant the world to us. It made Avah feel so special too, and I love that! She is so special and she needs to know that.
We were due back in Phoenix on the 30th. This time it would just be Avah and I. Shane had to work and he wanted to spend as much time with our other girls as possible. Another week of treatment went by. She handled it amazingly again. They made sure she had plenty of activies to do on New Year's Eve. She won over some new nurses and spread her contagious smile throughout the treatment floor. On the last day of week 2 my husband brought the other girls down to Phoenix to see Avah and I. We decided to stay down there for the weekend and do some fun things as a family. It was a great weekend! Avah and I were sad to see them all go back home.
Since Avah handled the first 2 weeks of treatment so well, her oncologist said the next 2 weeks could be done out patient at the clinic. Avah was so excited not to have to be stuck in a hospital bed all week. We arranged to stay at the Ronald McDonald House for the 2 weeks of out patient treatment. The staff at the Ronald McDonald house were great to us. We appreciate what they do there. Once again, Avah handled week 3 and 4 of treatment like a champ. She suffered from a few minor side effects, but over all it wasn't bad. She continued to amaze us with her stregth and her positive, happy outlook.
We are now at week 9 of injections. My husband and I do these at home. We do these 3 days a week. She has had a worse reaction with the injections than she did with the infusions. Fevers, acid reflux, developing an ulcer, headaches, and it tired much of the time. Her oncologist recently reduced her dose of interferon, and we're hoping it helps with her reactions. And through it all Avah doesn't let it stop her and she's back in school and doing great! The school has been so wonderful to her. They have been so understanding and they help out in any way they can. Avah still has a smile on her face and she continues to amaze everyone around her.
Never in my life did I imagine that this would be happening to our family. I've seen other people go through similar things and I have always felt so sad for them. I remember always thinking that I would never be able to handle something like that. I wasn't strong enough. I looked up to those people so much! Never did I think that I'd find myself on the other end. 
The day that Avah was diagnosed my Aunt who has been an absolute angel to our family through this told me something that has stuck with me. She said "Faith and fear cannot exsist in your heart at the same time. You must choose which one you want to have in your heart." I chose faith. We will get past this, Avah will be beat this, and we will all come out of this stronger. I am so blessed to have such an amazing support system--our friends and family have been so wonderful. What a wonderful thing it is to see so many people come together and be so kind. We have had total strangers help us in ways we never imagined. I will never be able to thank everyone enough. The small community we live in has been wonderful to us. Our town has really come together to help our family in any way they can. Avah has touched so many lives. I am so proud of the little person she is, her strength amazes me.
We go down to Phoenix tomorrow morning for her first set of scans since the start of treatment. These will show us if the treatment is working the way it is supposed to. Last night as I was tucking her into bed she was asking me questions about the scans. Avah is always full of questions. She always likes to know exactly what is going on and exactly what is going to happen. I love that about her, she is wise beyond her years. I answered all of her questions then I asked her how she feels about it. She said, "I feel good. Nothing scares me anymore. It's better to be happy instead of scared." Just like that I was given a moment of clarity by my 6 year old daughter who is battling cancer. What an example she is to me every single day. So we are going into the scans tomorrow happy, not scared. She is right, happy is better. I have learned so much from her this past year. Even after all she has been through, she remains happy and upbeat. I hope by sharing her story it will inspire others.

Thank you for reading Avah's story! If you'd like to donate to sweet Avah, go HERE. We're grateful for your support. xoxo

PS - We adore Millie's Princess Foundation for matching all donations! They are beyond generous.

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 23rd, 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


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 13th 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 17th 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.   
Results from October 24, 2013 show complete donor cell engraftment! Incredible! :)