"Worry is a misuse...

I must apply this to my life more often....

Taking pills

KJ has been working on taking his medicines in pill form. He also gives himself his own eye drops daily. The doctors and nurses are just amazed:)!

Almost had a heart attack..

Mr. Independent KJ takes off for the playroom without me and falls bringing the entire double IV poll down on him. After a few tears, a 15 minute blood palette transfusion and a few extra lumps on his bald head KJ is fine. The nurse says to him "is their anything else you need?" KJ replies "yes, can you get my mommy a glass of wine." SMH .. He knows he almost gave me a heart attack!

Thank you to St. Jude

On Saturday, November 23rd I walked with St. Jude & friends in honor of KJ.  Thanks to the research and treatments in childhood cancers, blood disorders and sickle cell disease my son along with many others have a chance to live a better quality of life.  People in 75 cities nationwide walked for the St. Jude Give Thanks Walk campaign.  Hearing the stories of other families going through similar situations, some had stories of triumph and others shared stories of pain of losing their loved ones.  Needless to say it was a very emotional day as KJ is going into the hospital the following day to begin his bone marrow transplant...

Myself and Joelle Allen

Transplant Day - Part 2 It's Time! The Stem Cells are here!!

Day Zero

Its a Celebration!! 

A new Birthday for KJ 12/5/2013!!  

It will be 3 to 4 hours before bone marrow stem cells are processed and delivered.  Meanwhile many of our family members are here playing, eating, telling stories and laughing!! I am happy everyone is here, but I'm also exhausted and emotionally drained. I look for a quiet place to sit, reflect and take it all in.  No luck.  All I want to do is curl up into my hubby's chest and wait for the 'liquid gold' to be delivered.

OMG! Its time! The stem cells have arrived!! I scream, I cry, I dance and I jump around!! 

Transplant day is usually referred to as 'Day Zero'.  What is Transplant?

Honestly, the process itself is pretty boring. Transplant is not a surgery, instead bone marrow is collected, processed and stored in a blood bag, similar to blood bag for transfusions. Then healthy new blood cells are infused into your body through intravenous (IV) line or in this case through the broviac line. The transplant team watches closely as they explain what to expect and how long it will take.  

Liquid Gold!!
Beautiful Bone Marrow Stem Cells!!

KJ falls asleep during transplant!

Two Thumbs up!
Transplant was a success!!

Surgery to place Broviac Line....

KJ is getting his Broviac line placed in his chest today, December 15, 2013.   The line will be used for chemotherapy, IV medications, IV nutrition and obtaining blood samples.   

What is a broviac line?

University of Michigan Pediatric Surgery defines BROVIAC catheters as similar to a PICC line. It allows a soft special type of rubber (silicone) IV catheter to be placed in your child without the need for repeated peripheral IV sticks. A BROVIAC catheter, however, is placed directly into a central vein, usually in the neck, upper chest or groin.  The catheter proceeds to a position just above the heart. In general, a BROVIAC® catheter is tunneled under the skin and brought out on the chest or thigh away from the site where it enters the vein. Theoretically, this prevents bacteria from gaining access to the central portion of the catheter. Finally, BROVIAC® catheters contain a "cuff" which is buried under the skin. Your child's tissues will grow into this "cuff" and allow the catheter to become more stable, which will reduce the chance of it becoming pulled out. 

Broviac catheter placement above the heart

KJ in recovery

Paralyzed by Fear....

At 4am the agonizing fear, anxiety, tension and stress has snatched me up out of a restful sleep.  In less then 2 days we begin the journey to cure KJ. I lay hear listening to the peaceful breathing pattern of my husband as he sleeps.. I know we both share the same feelings.  Although, I want to hold him and cry, I rather him sleep peacefully.  He to needs his strength and peace. 

So i'm laying here at 4am questioning my judgement, my sanity, my faith and my courage.. Why our we volunteering to put KJ through this toxic cure? Is his sickle cell really severe enough to put him through 9 days of chemo? Will he surivive a bone marrow transplant? Will Karson his little brother and the donor be in pain? Will the twins be ok while mommy and daddy spend weeks at the hospital? So many questions...

Take a deep breathe... Relax.. Let Go Let God! I say it 3 more times ...


Then I remind my self we are doing this so that he can live! So that he will not have to endure unimaginable pain! So that he can play without limits! So that he can swim no matter the temperature of the water! So that he can make a snow man and throw a snow ball! So that he can play little league baseball, football and soccer! So that he can go to school without missing weeks from being hospitalized! So that he will have a better quality of life!! We are doing this to destroy sickle cell!! We are doing this to so thats others will know they no longer have live with this horrible, unpredictable and painful disease!!

We are destroying sickle cell disease....

KJ at 3-Years Old

 KJ 3-years old and Kalen & Karson 8 Months 

Pre-School Graduation August 2013

KJ is loosing his hair

It's been 9 days since KJ's bone marrow transplant. Most days KJ is full of energy and smiling. Doctors are still amazed of how well he's doing despite undergoing chemo and transplant. However, I'm struggling to hold back the tears as I watch the side effects of chemo slowly change his physical appearance, the darkening of his skin, especially around his neck and under his eyes. This morning hair is everywhere! All over the pillows and sheets.  It's happening the one thing he was most afraid of, loosing his hair.  But I will keep my cool in front of him. Tonight when he's sleeping I will cry.

This too shall pass...

Our Journey to Cure KJ.....

In April 2013, we switched hospitals and never looked back. KJ continued the blood transfusions after all they were working. He had more energy, growing, less sick and fewer hospital stays. However, the doctors did further testing. A TCD screening on the head, MRI of the brain, and Ultrasound of the heart. The test revealed KJ's sickle cell was much more severe then what we previously was told. MRI revealed the disease has been causing mini silent strokes in the brain. Left heart valve is enlarged and liver has slightly too much iron 'iron overload.' OMG! What?! Really?!! He's only 5- years old, what type of quality of life will he have at ages 10, 15, 20?  Will he live to be our age, 40?!!

On our 6th Wedding Anniversary, we spent the day at the hospital with all the boys, including my nephew Quincy. KJ was getting his every 3-weeks blood transfusion. The twins Kalen & Karson were screaming and crying as nurses drew blood for the human leukocyte antigen, or HLA the testing for bone marrow.  A few weeks later, we learned BOTH twins were a 100% bone marrow match!! We ultimately, choose Karson as the donor because the umbilical cord blood stored was from his cord. Yes, doctors are using both cord blood and bone marrow stem cells for his transplant!!

KJ receiving a blood transfusion  and still getting used to his port

Kalen & Karson horsing around waiting to have their blood drawen for HLA testing, or bone marrow match

Kalen & Karson (Karson is wearing the Spiderman shirt)

Super Sam vs the Marrow Monsters: Guide to BMT for Children Part 1 (+pla...

Young 'superhero' battling sickle cell disease

KJ Battles Sickle Cell