Monday, April 14, 2014

Bryce's Battle with Acute Lymphoblastic Leukemia

Here is the story of Bryce's battle with ALL in the words of his mom, Julia.  


Bryce Bartczak is a 3 1/2 year old little boy who is generous with his smiles, hugs and fist bumps. In January 2014 our lives took a crazy turn when we learned he had leukemia. Here is Bryce's story:




Monday, January 13, 2014, Bryce was taken to the pediatrician because it appeared he had another ear infection. Bryce had tubes put in his ears in October but we were told he could still get ear infections. Sure enough, he did have an ear infection and was given an antibiotic. That evening I was holding Bryce's hand as we walked into the play room and he slipped on a toy. Since I had his hand in mine he did not fall or hit his head. I scooped him up in my arms because I thought he may have been frightened by the slip. Bryce arched his back and would not stop arching. Paul said he could see something in his mouth. I immediately began abdominal thrusts and back blows. When Bryce lost consciousness and began turning blue, I began rescue breathing. Bryce did start breathing by the time the ambulance arrived. He had a chest X-ray at the ER and it showed he did not aspirate and he appeared to be back to normal.

We took Bryce to the pediatrician on Tuesday for a follow up. She reviewed the chest X-rays and after we told her the story once again of what happened she felt it may not have been a choking incident. We began the process of scheduling an appointment with a neurologist.

In the following days Bryce began looking shaky when he would stand up and he also began scooting on his bottom to get from place to place. By Saturday he started refusing to walk and wanted to be carried. On Monday, January 20, I called the pediatrician. She said it may be a virus and give it 48 hours but call her if we noticed any other changes.

On Tuesday Bryce woke with a temperature. He should not have a temperature due to the antibiotic he was on for the ear infection so Paul took Bryce back to the pediatrician. The pediatrician said that some blood work was needed and she was able to get us in at Hope Children's Hospital in Oak Lawn.

At Hope Children's Hospital we learned Bryce had Acute Lymphoblastic Leukemia. It is in his bone marrow but not in his spinal fluid. Bryce had many procedures and the chemotherapy treatment was started. After 10 days (Tuesday, Jan 21-Thursday, Jan30) at the hospital it was determined that Bryce's numbers were good enough that we could bring him home. Bryce's course of treatment will be over the next 2 1/2 years.

Update:

Bryce has completed the "induction phase" of his chemotherapy treatment. Unfortunately, his bone marrow showed a higher percentage of leukemia cells than we expected. This means that Bryce will need a more aggressive treatment plan. Bryce has Down Syndrome which means he is at a greater risk for toxicity (side effects) and now with the more aggressive treatment he will be an even higher risk.

Please continue to pray for our family. It is going to be a long journey but it will be worth it when the strongest guy I know is cured!

Love, Julia

Ambulance Ride


Some of you may know that Grandma Eileen Haase had her first ever ambulance ride...of course it was with Bryce. Bryce didn't want Grandma getting bored during her visit.
We are required to carry epi pens because Bryce could have an allergic reaction to the various chemo drugs. On Tuesday, March 4, Bryce appeared to be having problems breathing. Grandma and Bryce's school teacher were at home and acted quickly. Ms. Meghan administered the epi pen and Grandma called 911. Paul and I met the ambulance at the hospital. It was determined that Bryce was nauseated from the medications (he received 4 different chemo drugs within 24 hours) and it was causing him to gag and dry heave and appear to have problems breathing. We now give Bryce medicine to help with the nausea. No, things won't be boring for us for quite some time! Thank you for your continued prayers!

Spinal Time


Today's visit to the cancer center went so much better than last week! In this portion of treatment Bryce received spinals taps every week for four weeks (in addition to chemo through his port, in liquid form, pill form and shots). Last Monday Bryce's counts were very low. The team decided to give him platlets and then they would do the spinal. The platelets weren't available so they moved forward with the spinal which means they remove spinal fluid for testing and then insert a chemo drug. The spinal went well and since we had decided to return the next day for his platelets and red blood cells the other chemo drug was administered through his port. So, after arriving at 7:30 am we were all ready to leave at 4:30 pm. When the nurse began removing the access to his port, Bryce passed out. After having him checked by the doctor and waiting 30 minutes it was determined that he became upset, started to cry and due to his low counts he may have held his breath which contributed to his passing out. As we started to drive away from the cancer center Bryce started to cry and passed out again. Needless to say, Paul turned the car around and back to the cancer center we went. Bryce was admitted to the hospital where he was given IV fluids and red blood cells. This seemed to do the trick. Bryce had color in his face and was back to himself even though it was at 11pm. The following day Bryce received his platelets as well as an EKG and Echo of his heart. By 4 pm Tuesday, we were on our way back home.
Today, Bryce received the final spinal in this series and all went well. His counts are low but he did not receive any transfusions.
We want to thank everyone for their positive thoughts and prayers...and ask that you continue! Only a couple more years to go!

Universal Language

Bryce had a very long day at the cancer center this past Monday, April 7. We arrived at 7:30 am. After it was determined that Bryce's counts were just enough for him to receive the chemo, we had to wait for his urine to reach a certain dilution before the chemo could be administered. That particular chemo cannot stay in the kidneys or it will cause damage. So, after the chemo was in his body the next step is to flush his system with IV fluids for several hours.
Upon returning to the Day Room (where children stay when receiving their chemo) after another restroom visit, Bryce saw a girl who was about his age and of course he just knew she wanted to play with him. I was trying to tell him we needed to find our own toys when one of the nurses asked the little girl if Bryce could play with her. She said "si". Bryce and I pulled up a chair to where she and her mother sat. The little girl and her mom spoke Spanish. Bryce says some words but uses mostly signs. I don't know any Spanish.  And yet the four of us played together for over an hour. We played with toy foods, animals, shape sorters and puzzles. It was fun and we were all smiling.
I love how children just want to play. They don't care if you have hair, what chemo you are hooked up to, or if you can speak their language because for them play was the universal language. And play sure made the time go by much faster!

We can't thank everyone enough for all of your support during this journey with Bryce.

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