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Honored Kid Shannon J. Age 7

Shannon J.'s Photo
Location
North Las Vegas, NV, US
Diagnosis
Acute lymphoblastic leukemia (ALL)
Date of Diagnosis
January 2013
Status
In treatment
Treated At
Sunrise Children's Hospital
Children's Specialty Center of Nevada

Message

This past November little "Joon" turned 3 years old. Life changed very quickly for him. He was taken to the ER on January 6th when his mom noticed loss of skin color and swollen glands, only to be rushed for an immediate blood transfusion/platelets and chemo. The bone marrow biopsy came back to confirm Pediatric Acute Lymphoblastic Leukemia. He is now fighting for his life at Sunrise Children's Hospital in Nevada. Funds raised will help Lisa, a single mother raising two adorable and big hearted little boys, stay at Junior's side. The doctor said it will be 3 1/2 years of treatment. Starting tomorrow, January 11th, Junior will undergo chemo treatments twice a week. His bone marrow is packed with cancer cells and this little superman has unfortunately, also developed sores in his mouth causing more pain than any child should ever have to endure. As his mom, dad, aunties, and uncles are all by his side listening to the news from the doctor, tears fall down begging for the answer to why. The irritability and exhaustion is seen on his face and heard in his voice as he keeps fighting this disease, but no matter how tough the battle, his spirit does not break.

Update: 01/12/14
The hospital released Jr. last night at 10:30 p.m. with instructions to bring him back ASAP if he starts running a fever, as this could mean he has a bacterial infection which could be fatal. He didn't have much time to feel the comfort of his own home. Around 5 a.m. he had a high fever of 103 degrees and was rushed back to the ER. This is a child's nightmare. Let's bring this sweet boy home!

Update 01/13/14
Here is an update on Jr.'s re-admittance:

His platelets are low and waiting for the culture to come back to see if he has any type of infection. This process of mixing it with his blood to see if anythng grows takes 24-48 hours.

Fever in a patient with acute leukemia may be a manifestation of the leukemic process or may signal a major complication, namely hemorrhage and infection.

Update: 01/14/14
A smile finally came from Junior's face for the first time in a week! This is heartwarming but also heartbreaking to know this baby has had to live this long without being able to smile.

Update 01/15/14
When Junior was admitted for a high fever on Sunday, it had become "off and on" on Monday and since then, non-existant. The doctor ordered cultures for 3 consecutive days. Each test takes 24-48 hours for any bacteria or infection to show and/or grow. So far, all have been negative with a few tests pending. This is fantastic news thus far! The down side is Junior cannot go home. Even though a fever is gone, he still requires hospital monitoring for days after.

This morning was his lumbar puncture. Junior was so scared going into the treatment room..crying, begging Lisa not to leave and to get him out.

Here is an explanation of what this is:
A lumbar puncture (also called a spinal tap) is a procedure to collect and look at the fluid (cerebrospinal fluid) surrounding the brain and spinal cord. During a lumbar puncture, a needle is carefully inserted into the spinal canal low in the back (lumbar area). Samples of CSF are collected. The samples are studied for color, blood cell counts, protein, glucose, and other substances. Some of the sample may be put into a special culture cup to see if any infection, such as bacteria or fungi, grows. The pressure of the CSF also is measured during the procedure.


At the same time, chemo is administered and he is put in a twilight sedation. It allows the chemo to target the area(s). This is monitored to check for any spreading of the disease to the brain or testicles. The proceudre takes 15-20 minutes. Chemo was also administered for a second time hours after.

These treatments cause Junior to become so nauseous and alter his taste buds. The steroids cause this precious boy to be so grouchy, irritable, crying, and hungry all of the time. Most of us cannot even imagine having to deal with the constant of all these side effects every day, 24/7. Being so hungry but having his taste buds altered and sores in his mouth doesn't allow him to take in the fluids and nutrition he needs. This is so heartbreaking for Lisa to have to watch and not be able to help more than what the doctors are doing. She is always by his side and comforting him, not able to eat or do the necessary grooming a person needs. She has an inspirational amount of patience but in trying to stay strong, she is also being worn down. Please keep praying for Junior and Lisa.

Update 01/24/14
Hello everyone!

I first want to say that I'm more than happy to be able to have a chance to send an update myself.
I want to thank all of you for your continued light, love, prayers & support through this difficult time.

Here is an update on our little angel.


He's still in the hospital, receiving oral and IV antibiotics as precaution from the fever he had Sunday 1/12/14 when we were readmitted. (Whoa, we have been here awhile!!) Even though all of his blood cultures came back negative, the Dr's stated that they still have to treat with antibiotics. This is due to the fact that there are so many infections that are undetectable.
His ANC count was 0 Tuesday which is a type of white blood cell. This is to be expected with chemo. They purposely shut your immune system down to nothing so new non-leukemia cells can start producing. This is why fever is literally an emergency because they have no immunity whatsoever.
He had another round of chemo Wednesday, it's basically been weekly as of late. His ANC (Absolute Neutrophil Count) was up to 64 on that morning. Everyone is different as to how the body rebuilds itself. I was surprised that he was at zero Tuesday, as he hadn't had chemo since last week, yet those #'s bounced right back up the morning of chemo. (this particular type of chemo, vincristine, has been administered at 6pm on the designated days.) The Dr's explained that it can sometimes take 7-10 days for the chemo to bottom out your immune system. It's somewhat of an oxymoron, I kmow!! However, this is a needed & helpful, health promoting oxymoron, so we will take it!

Overall, Shannon Jr. Is doing good! He is still very whiny and acts pretty miserable all day.

His cheeks are so chubby from the steroids.
He's definitely not himself.
But I believe in the treatment he is receiving. Not a day goes by where any of this is easier or more accepting as you watching your precious baby go through this. I put all my faith & trust in God. I'm here by his side 24/7 to support & comfort him. I hope he starts to feel better soon. Happily he hasn't lost his appetite.....a lot of kids do. He does gets very full and gassy and still wants to keep eating.
That's always better than not eating, I would say. His tummy is extremely descended right now. They did an x-ray earlier this week, which showed gas. Best thing for him is to walk a lot, eat healthy, drink plenty of fluids & keep his spirits up!

I'm just doing all I can everyday to keep a smile on his face & hope in his heart that we will be home soon & back to normal life ASAP!

Thank you all for the continued prayers!
Jr.'s Mommy


Update 01/27/14
Little Junior was released from the hospital today and was able to go home. this little guy still has a long road ahead of him. Together, we can continue to help Junior beat Leukemia. This ugly disease will not win!!

Update 01/29/14

Port extraction means blood levels are good!! Yay!! His ANC is 4100!!! He is responding great to the chemo! He also only shows a genetic mutation within the leukemic cells, which makes him more susceptible to treatment! His blood work is showing less than 0.01% out of 10k that are Leukemic cells as of today, when initially they were 97% Leukemia! G-d is so good!!! This still requires 3.5 years of treatment, so keep the prayers coming!!!

Next Wednesday he will have another lumbar puncture w|chemo as well as another bone marrow biopsy which will tell a lot more as to how he is responding. With that, they will set up his next phase of treatment. I found out he will be off this high-dose steroid on the 35th day of treatment, which is February 11th! Horraaaaaay!!!
I marked that date on my calendar! It may take several weeks for the swelling & side affects to dissipate, but we can work with that!
Jr's Mommy


Thank you for supporting me and the more than 300,000 kids worldwide who will be diagnosed with cancer this year. By sharing the gifts of your time, talent and money with the St. Baldrick’s Foundation, you're supporting research to give all kids with cancer a better chance for a cure. See more at: http://www.youcaring.com/medical-fundraiser/help-junior-beat-leukemia-/124707#sthash.8ikwEHHm.dpuf
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