Luke B.
Born: January 29, 2004
Illness: Acute Lymphocytic Leukemia
Quilt Deadline: May 1, 2009
Theme of Quilt: Quilt is now full and closed.  Please check the other children for stitching information.

The following interests are mainly to help you get to know the child better.
You may use what you can towards the theme of the quilt, but make sure that you stitch within the theme. 

Luke's interests are: blue, racecars, trucks, monster trucks, trains, airplanes, boats, construction vehicles.  Luke lives in IL.

Click here to see the squares for Luke as they come in for him!  (Please keep in mind that his quilt wasn't opened to stitchers untilJanuary 2009)
Biography

Luke was born on January 29, 2004 weighing in at a hefty nine pounds four ounces. I didn’t realize he was such a chunk until every new nurse that walked in the room said, “Whoa, how big is he?” Luke was noticed right from the beginning and has always had a big personality. He was a very happy baby, with lots of smiles and laughs and always full of action. Luke began crawling before he was 7 months old and started climbing out of his crib at about 12 months. I can’t really say when he started walking, because I don’t know if he ever walked – he ran everywhere. He had places to go and things to get into! And the independence and stubbornness – wow, what a patience tester. But those big grins, sense of humor and intelligence just charm everyone he meets. I always say that if you know Luke, you can’t help but to love him.

A few days before Christmas in 2006, Luke complained that his right elbow was hurting. He said he fell down and landed on his elbow, so I took him to the doctor. We got x-rays taken, no fracture was found and the doctor thought maybe it was a bad bruise or a strained ligament. Luke’s elbow swelled up and bruised, but was back to normal in a few days. Christmas and New Year’s came and went and we all got back into the normal routine. A few weeks into 2007, I noticed Luke was pale and he had dark circles under his eyes. I thought it was just due to the lack of sunshine in the winter and that Luke was adjusting to sleeping in his big boy bed and not getting enough sleep.

Then on January 29, 2007 Luke began complaining again that his right elbow was hurting him. It was his 3rd birthday. I took him to the doctor again and was told Luke probably had nursemaid’s elbow – where one of the arm bones was coming out of joint. I told the doctor about my concerns of Luke’s pale skin and dark circles under his eyes and the doctor thought it was just due to lack of sunlight and naturally fair skin tone. The doctor suggested visiting an orthopedic doctor to determine what was causing the nursemaid’s elbow or if there was strain or sprain.

When I got home I researched nursemaid’s elbow on the internet. The diagnosis just didn’t fit, and Luke was in excruciating pain. I was alternating Tylenol and Advil every 4 hours, but it was wearing off in 3 hours and he was so much pain that he couldn’t sleep. I decided to take him to a Pediatric Emergency Department the next morning hoping they could find out what was really wrong, and if not, at least give him some stronger pain medication. The ER doctor commented on Luke’s pallor and drew blood along with sending him for another x-ray.

I was really expecting there to be a break that had been missed. I don’t even think complete shock accurately describes my feelings when the ER doctor said, “His arm isn’t broken, but I have bad news. Your son has leukemia.”

Luke was transported via ambulance to Children’s Hospital. It was a whirlwind of nurses, phlebotomists, anesthesiologist, orthopedists, and oncologists from the moment we arrived. Luke received 2 blood transfusions that evening and the next morning had a bone marrow biopsy, spinal tap, and his first dose of chemotherapy. We found out his elbow pain was due to a bone lesion caused by lots of leukemia cells in that area. Luke remained in the hospital for 5 days due to a fever. Those were horrible, exhausting days filled with tests, pokes, and bad-tasting medicine Luke was supposed to swallow. He went back to the hospital 2 days later for his first outpatient treatment. We were both so grateful to go home at the end of the day.

The first two months of treatment were very hard on Luke. He didn’t smile or laugh. He didn’t want to watch TV or even read any books. He barely spoke and didn’t play at all. Luke was exhausted and had trouble walking and would often tell me, “Mommy, I am sad.” My heart just broke. Eventually, there was a little more talking and a little bit of playing. I will never forget Luke’s first laugh after he began treatment – it was like the sun finally came out from behind the clouds and warmed my skin enough to chase the constant chill away.

Luke has made it through the very rough treatment phases of induction, consolidation, interim maintenance and delayed intensification. He is now in the maintenance phase which consists of a daily oral chemotherapy drug, another oral chemotherapy drug taken weekly, antibiotics three days a week, steroids five days a month, IV chemotherapy once a month and intrathecal (spinal) chemotherapy every three months. This is still so much medication for one little body, but this phase is much more tolerable since it requires only one hospital visit a month.

Even though Luke goes to the hospital once a month, it is still hard for him. After Luke got his IV chemo in July, he announced that he didn’t want another IV. My explanation that he wouldn’t need another one for a whole month didn’t appease him. Luke said, “No, I mean never.” We are getting closer to never, but not close enough for him.

Luke is nearing the halfway point of treatment, which is joyful, but at the same time means that he has 21 months of treatments left. Right now Luke needs a little encouragement to get him through this tough middle ground where he knows what to expect and just doesn’t want to do it anymore.

Luke has had countless IV pokes, taken thousands of doses of oral medication, endured spinal taps and bone marrow biopsies. He is a fighter and handles his ongoing battle with grace, acceptance and determination. He is an inspiration and anyone that has met Luke knows he lives life to the fullest! We have been blessed to have tremendous support from our family, friends and community which has truly helped us continue the fight.

Luke has come so far since those first months after being diagnosed. He is back to running, laughing and playing – although I still can’t say carefree. But best of all, those smiles and laughs that are such precious gifts are now a daily occurrence!

Written by Luke's mom in August 2008
Here is the listing of the patterns that
are being stitched for Luke!

Thanks!  Luke's Pattern Listing
Thank you to all who have signed up to stitch for Luke.  Keep watching the main 2009 page for a link to the scan of the quilt after it is finished!
Click to go back to the 2009 page!