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Stephanie has given all of us a gift by recording a daily journal from nearly the start of their nightmare. It appears on CaringBridge , a nonprofit site to connect families and friends facing medical challenges. If you are not aware of this marvelous web site, I highly recommend visiting it. I do not know how long they will maintain Tyler’s page so I hope that this journal will be preserved for future generations. Tyler’s complete story is at:
http://www.caringbridge.org/visit/tylerburdick
Stephanie no longer makes daily updates to Tyler's CaringBridge site but she does frequently update her family blog. It is at:
http://burdickfamilyblog.blogspot.com
Through these daily updates I, along with untold others, have come to know Tyler as if he was a member of my own household. Stephanie and Dan, as well as their other boys, Dawson and Gabriel, have had to tread where no family should have to go. Their efforts to save their child’s life have been nothing short of super-human. But in the end, cancer won – this time. Stephanie wants everyone to know how childhood cancer affects the entire family so she has made their lives an open book, literally.
Following are a couple excerpts from her journal as well as a news story produced by one of the local television stations in Minneapolis, MN, close to their home in St. Cloud. I hope you will take a few minutes to read them and more entries on Stephanie's blog and CaringBridge. You can also write to her at gpxchick@hotmail.com, I know your words of support would be helpful.
And if you find it in your heart, I hope you will consider donating something to this devastated family, as I have done and will continue to do – I can think of no better cause. Thank you.
Send checks to:
Dan & Stephanie Burdick
4222 Clearwater Rd #205
St. Cloud, MN 56301
Background Story
We had Tyler's 4 month well baby appointment on June 22nd. The Dr thought he looked pale. Our 2 year old Dawson has always been pretty pale so we didn't think it was a problem. Our doctor wanted to run a blood test on him anyway, just to be on the safe side.
So I got a call about 30 minutes later from the Dr. He said they found something wrong with his blood and we need to come back to talk to him and prepare to go to the cities. So I called my mom to come get Dawson.
We got there and the Dr told us that Tyler's hemoglobin was a 6. Normal is 10-15. They did a white blood cell count and it was 119,000. So Dawson went with Mom and my sister Sarah, and we headed straight to Children's in Minneapolis.
We got to Children's and got checked in. They tested his levels again after some trouble putting in the IV. His hemoglobin was 3.6 and his WBC count was 178,000. So they did 2 blood transfusions. 2oz at a time, over a 2 hour stretch each. That way his body can slowly get used to that.
The next morning his levels were 7 for hemoglobin and 124,000 for white blood cells, so we were happy to see that improvement. He went into surgery at 10:30am to have a bone marrow biopsy, spinal tap with chemo injected into the spinal fluid. They put a central line put in his chest called a Hickman Catheter. So now they won't have to deal with IVs and poking him. All his meds, chemo and IV fluids will be injected through the Hickman.
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Diagnosed June 22nd, 2009
Started Chemo June 30th, 2009
Remission achieved July 21st, 2009
Entered Deep Remission October 2009
Released to go home for Maintenance December 1st, 2009
Found .3% cancer cells - Jan 21, 2011
Found 5% cancer cells - April 15, 2011
Admitted for Transplant Sept 6, 2011
Bone Marrow Transplant Sept 15, 2011
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Official Full Diagnosis: Infant Acute Lymphoblastic Leukemia, Precursor B Cell with 4:11 MLL Translocation
Chemo Rounds/timeline:
Diagnosed - 6/22/2009
Hickman put in 6/23/2009
Chemo plan created and signed - 6/24/2009
Induction (weeks 1-5) - DONE Started 6/30/2009
Home for first time 7/29/2009
Back to Hospital 7/30/2009
2nd Hickman put in 7/31/2009
Home 8/1/2009
Back to Hospital 8/5/2009
Induction Intensification (weeks 6-9) - DONE Started 8/5/2009
Re-Induction (weeks 10-12) - DONE Started 9/14
Consolidation (weeks 13-19) - DONE ended 2/26/2010
Continuation I (weeks 20-49) - Started 3/22/2010
Continuation II (weeks 50-104)
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"Cheat Sheet" for what the counts mean
WBC (white blood cells) - this is what is affected in Leukemia. It's WBCs gone bad. So we want to get rid of the bad WBCs. We did that, there is an undetectable amount of bad cells in his blood now. But there could be some there still, just in a micro amount, which is part of why he's still on chemo. Now we're rebuilding the good WBCs, so we want this number to go up. A normal amount is 6,000 to 17,000.
Hemoglobin - this is in the red blood cells, it transports oxygen from the lungs to the rest of the body. A good sign that he's low is he gets really pale from lack of oxygen and red blood cells. When this is too low (8 or less) he gets a blood transfusion. Normal is 10.5 to 13.5.
Platelets - this is the clearish stuff that comes out when you get a cut. It stops the bleeding and allows the blood to clot. When the platelets are low, they bleed easily. Nose bleeds, diaper rash doesn't heal well, etc. He gets a platelets transfusion when he gets below 20,000. Normal is 150,000 to 450,000.
ANC - this is his immunity. When it's below 600 he's considered Neutropenic. This makes it very hard to fight off infections and he's very likely to get bacterial and fungal infections. Normal is 900 to 7,820.
Wednesday, November 2, 2011 11:48 PM, CDT
Tyler Earned his Wings
Tyler is now in Heaven. Pain free and at peace. Flirting with all the cute girls and racing his cars all over the place. Filling the place up with his cheery laughter. He finally gets to meet my Grandpa, who he missed by only a couple weeks. I know he will be well cared for, but we will miss him beyond words.
Short version, he passed away in my arms after holding him for 3 hours. He was not awake or concious but it felt good to have him in my arms again. It'd been almost 6 weeks. It was also nice to see him tube-free again.
Long version: They came at 1pm to unhook the dialysis circuit. As planned, they moved all the tubes, pumps and everything to the one side of the bed so I could hold him. He was not expected to survive the change. With his blood pressures being what they were the last few days, they say nobody should be able to stay alive like that. I guess he just needed to cuddle his mommy for a while. The nurses were in tears. Our Oncologist and primary nurse visited us this morning. It was nice to see them again. Once he was settled in my arms, they unhooked dialysis. He kept holding on. His blood pressure actually went up for a while.
After a while his blood pressure slowly drifted downward. He was down to 16/9. They said with the blood pressure he had before, 50/30, he was no longer concious. He hadn't woken in a couple days. His pupils were no longer reactive at all, which means the brain function is very minimal. With 16/9 there was no way the brain or anything important was getting enough of anything to survive. Tyler's fingers and his arms were getting cold. We had both told him it was ok to go. His whole life he has fought so hard, it's hard to change and let go, for all of us. This morning his liver, kidneys and tissues were much worse. Parts of him were purple from lack of oxygen. His body was really deteriorating. It was time to let him go. They gave us the option to turn off his blood pressure meds. They said it was mostly the meds keeping him going. Since dialysis was off though, they would not clear from his blood right away. So he kept going, very faintly. They offered to free him of his tube, something that didn't sound ok before but suddenly felt right in that moment, so we agreed. They took out the tube and he breathed on his own for about 30 minutes. They were very shallow breaths, often far apart. I kept wondering if each one would be his last. Finally he stopped. He looked so peaceful without his tube in. Both Drs confirmed and they declared him gone at 4:33pm.
It still feels unreal. I've watched him go through so much his whole life, laying hooked to all those tubes and machines the last 6 weeks. I felt him take his last breath and kissed his cold head goodbye. Yet I still can't believe my little boy is gone. We are numb, going through the motions in a trance. We had sandwiches but didn't taste anything. We didn't get out of the hospital until 9pm. Nurses played with Gabriel for 5 hours while I sat with Tyler and while we both held him after he was gone.
Thank you everyone for your support, messages, donations and all that you have done for us. We are lucky to have such amazing people around us.
http://www.kare11.com/news/article/944692/391/Dad-fired-while-caring-for-son-with-leukemia
Dad fired while caring for son with leukemia
Nov 1, 2011
Written by Boua Xiong
bxiong@kare11.com
MINNEAPOLIS -- Tyler Burdick was born a healthy and happy baby. He was growing at a normal pace and life was good. But at 4 months old, doctors found out Tyler had infant Leukemia.
He started chemo and the cancer went away. Then Tyler turned two years old and the cancer came back with a vengeance.
"It's been tough just seeing him laying there and wondering if we'll be able to talk to him again," Stephanie Burdick, Tyler's mom, said.
Tyler had a bone marrow transplant in September. But recovery has been difficult. His liver and kidneys are failing and doctors think he may have a brain injury from high blood pressure but can't confirm because giving him an MRI is dangerous since he is so weak.
His parents have been by his side every day at Amplatz Children's Hospital in Minneapolis. "It was easier when he could talk. He's just been sedated for a month. It's almost like having him gone but he's still here," Dan Burdick, Tyler's dad, said.
Each day is a battle for the family, especially since home is in St. Cloud. Two weeks ago another hurdle came their way. Dan was fired from T.O. Plastics in Clearwater, a company he worked for for four years.
"They had to decide to terminate my employment since I had to be here with my family and now is the busy time of the year for them and they need someone there all the time," Dan said.
In a statement T.O. Plastics wrote: "In tending to the needs of his son, Mr. Burdick exhausted all of his Paid Time off and Family Medical Leave Benefit. And despite T.O. Plastics permitting personal leave beyond that required by law (FMLA), this situation became more difficult because Mr. Burdick failed to keep in contact...regarding his ability to return to work."
Burdick said T.O. Plastics only contacted him once via email which he wasn't checking while he was in the hospital with Tyler.
According to the U.S. Department of Labor, The Family and Medical Leave Act allows employees to take up to 12 weeks of job-protected, unpaid leave. Dan said he didn't know he used up all his leave time. He had too many other things on his mind.
"If something happens I'm here. I can't be one hundred miles away in St. Cloud or something. It takes about an hour to get down here," Dan said.
Tyler may not have much longer. His health has gotten so bad his parents have signed a do-not-resuscitate order. Burdick said he doesn't know what he will do for a job when he gets home but said he has no regrets.
In the statement given to KARE 11, T.O. Plastics wrote that Dan is welcome to re-apply for a job if he'd like. At this point, Dan said he has not decided whether he'll take up the offer.
The Burdicks have used up most of their savings and aren't sure how they will pay for a possible funeral.
To help the family and read more about Tyler, visit www.caringbridge.org/visit/tylerburdick .
(Copyright 2011 by KARE. All Rights Reserved.)
(Reprinted with permission.)
Early treatment
Tyler loved his fluffy robe
A rare shopping trip with Mom
In remission
Tyler on his second birthday
Tyler (age 2) with brothers Dawson (age 4) and Gabriel (age 4 mos.)
Tyler with his beloved "Cars" toys
Tyler knows who is in Charge
Stephanie and Dan Burdick