Wednesday, September 30, 2015

BJ's poem...Cancer Sucks

It's BJ again and I figured since it's the last day of Childhood Cancer Awareness month I'd post this.

C: Caring: people caring for you
A: Asking and answering so many questions
N: Nurses by your side to give you something for nausea or pain.
C: Cautious, cause your immune system is compromised and if you get sick it could be extremely bad, like getting a fungal infection in your lungs
E: Excruciating pain on some occasions, some cancers more than others
R: Remember, God will take you through it and be with you. Just do what you need to do and keep your head up.
S: Say goodbye to your hair. Chemo kills fast growing cells. So your hair goes first.
U: Up all night cause you can't sleep.
C: Chemo that kills your cancer also destroys your body.
K: Keep fighting. Giving up will be giving up on yourself and this is not the time you wanna do that.
S: Share this post so people realize how bad it is. Cancer SUCKS and children deserve more than 4%!

September 30, 2015

Back at the clinic this morning for BJ's exam. After BJ's lab results came back, Dr. Kaplan was pleased to see that he still does not have any leukemia showing up in his blood stream. We don't know what his bone marrow looks like and there is no plan to do another bone marrow biopsy at this time. His platelet level held on from the transfusion Monday and he didn't need a blood transfusion today. His immune system level is higher today so with that, Dr Kaplan decided that BJ would get another infusion of methotrexate and vincristine. BJ is feeling ok, just very fatigued. He has slept through his IV Zofran and can sleep through his chemo infusions as well. I hope this infusion won't make him feel as bad as it did the last time! Hours after the last infusion like this, he developed a fever and was inpatient for 2 days. Hopefully we won't have a repeat of that!

Thank you so much for your continued prayers and encouragements. We are so blessed by each one.

Monday, September 28, 2015

More Platelets

BJ had a clinic appointment this morning for labs. He just received platelets Friday, but his platelet count was low again so he received another unit of platelets today. He was very proud to be wearing a fellow warrior, Elijah's - Prayers for Elijah - fight shirt. If you haven't already, please go to and like Elijah's site. He needs all of our prayers.

Reflection and memories made

BJ was given 2 tickets to see the Carolina Panthers play the Saints yesterday, and even with the misting rain, we had an incredible time! Like good fans, we stayed in our seats until the very end of the game and watched our team hold on to their lead and seal the win.

So like most days, I reflect... The last time we were at a Panthers game, BJ was 12 years old, and a year into active chemotherapy treatments. That day he got to meet Steve Smith and shake Ron Rivera's hand before the Panthers played the Steelers. That day also solidified BJ's love for the Panthers. Fast forward through 2 more years of chemo infusions, spinal taps with injected chemo into his spinal fluid, steroids, handfuls of pills every day, missed school, hair falling out and growing again... Then this past May, BJ participated in the "Keep Pounding 5k". He was the honored Levine Children's Hospital's patient of the race. He RAN the race. He finished it in 29 minutes. He felt good! Two hours after the race, BJ played an entire basketball game for our local rec league. Two weeks after the 5k, at his normal monthly oncology visit for chemo, we found out that BJ's leukemia had relapsed. It was the worst kind of sucker punch. After 2 1/2 years of treatments and 7 more months left to go, 70% of the cells in his bone marrow were leukemia blast cells again. You can safely assume that while he ran that 5k, and then played an entire basketball game 2 hours later, leukemia was taking over 70% of his bone marrow. He never complains and he didn't that day. He was just so happy to be running beside his best friend, running through the Panthers stadium, finishing that race, banging the crap out of that Panthers drum, and feeling like a normal 14 year old. All these reflections of events are mixed with the horrible reality of what I have watched my child endure, and what he continues to endure. I can't even express how proud I am of him. I never set out to raise a superhero. But that is exactly what he is to me.   Treasure every moment.

Friday, September 25, 2015

More Platelets

Plan change for the day. No chemo. Just platelets. His platelet count was back down to 8k again. BJ's white blood cell counts are also low, but his oncologist doesn't want them to drop any lower (because he is still fighting the fungal infection) so he's holding off on the chemo infusions today.

Leukemia from my perspective. Written by: BJ @ 2a.m.

Leukemia from my perspective.
Written by: BJ@2a.m.
L: Losing your chance to live life the way you should (I missed 6th grade and now the start of high school)
E: Emotionally and physically taxing... missing out on things with your friends, trips, camps, sports... and most, if not all your muscle mass disappears, so you have to start from the bottom.
U: Uncomfortable everywhere you go and through treatment
K: Killing your cancer, but if you're having chemo you're killing every other cell in your body in the process too
E: Exercise if you can, it'll help you feel better and hopefully make a little less of a load when recovering, once you beat cancer
M: (I have two M's) Mom is the only person to stay with you everyday and care for you. Miserable, but having to keep a smile on your face, cause you know people are looking to you and how you handle cancer. So if there's nothing you can do don't worry about it. You don't have any control but how you handle it, so make the best of it. You'll only make it easier on yourself and maybe others too.
I: Immune system. There is no such thing sometimes. Chemo and cancer took that away (no going anywhere, sometimes not even leaving your own room in your house...luckily I was never compromised that bad.
A: A happy ending is what all children with cancer deserve so #morethan4 !!!!!!

Gotta kill some leukemia

BJ has clinic this morning for the usual blood draw, to check his counts and to also see if he needs blood or platelets. Then he will get vincristine and methotrexate infusions. Gotta kill some leukemia today.

Monday, September 21, 2015

More platelets

At our Levine hem/onc clinic this morning getting checked out. BJ has been feeling extremely worn down lately. Walking into the building from the parking deck has made his heart rate double what it normally is. His platelet count was 8k, so he will be getting a platelet transfusion this morning. That will help heal his bruises too.

As the SEALs say... Day to day, meal to meal....

...taking it one day at a time until he goes back to Duke to get his modified T-cells.

Friday, September 18, 2015

September 18, 2015

BJ had a low fever last night but it went down on its own. He was discharged to go home this afternoon!

His leukemia isn't showing up in his peripheral blood today either, which is AWESOME, so the chemo he received on Wednesday has made a difference!

His platelet level is getting pretty low, so he'll most likely get a transfusion at clinic on Monday.

He's pretty tired, and has a mild spinal tap headache, but otherwise feeling much better than Wednesday night.

We're really excited to get to spend the weekend at home!

Thursday, September 17, 2015

September 17, 2015

What a week this has been! We were at Duke on Monday and Tuesday for the initial portion of the CAR-T cell clinical trial. BJ's white blood cells were collected on Monday. He had an early morning on Tuesday too, with fluids, anesthesia, a bone marrow biopsy and a spinal tap to collect a sample of fluid. We were able to start the trip home and arrived around 7pm. On Wednesday, he had an 8am appointment at his regular oncology doctor at the Levine Pediatric Hem/Onc clinic in Charlotte, where he had blood drawn for labs and then an infusion of 2 chemo drugs. Last night, he developed a fever and was admitted to Levine Children's Hospital. He's feeling better today, but we'll be here tonight too, just so they can make sure the fever doesn't come back overnight.

BJ's leukemia is growing fast without being treated with chemo for several weeks. Labs from Monday at Duke showed 6% leukemia cells in his peripheral blood. On Tuesday, there were 12%. Wednesday, there were 17%. Just to explain what that means... BJ's type of leukemia originates from inside his bone marrow, so when those leukemia cells multiply enough, the marrow becomes crowded, and they spill out into his (peripheral) bloodstream along with normal red and white blood cells and platelets. When there are leukemia cells visible under a microscope in his bloodstream, there are many, many more in his bone marrow. I've mentioned MRD in earlier posts...MRD is a measure of the percentage of leukemia cells in the bone marrow. BJ's leukemia is too aggressive and resistant to the chemo he's had over the past 3 years of this fight. With all of the treatments he's had since his relapse in May, he was not able to get to a point of 0.1% MRD. (Which is why this clinical trial at Duke is so exciting!) When you start talking about MRD, it's because you can't see any leukemia cells in the bloodstream under a microscope. So 17% leukemia cells in the blood stream is very concerning. The percentage will be much higher in the bone marrow. Since he developed the fungal infection, he has only had intrathecal (in the spinal fluid) chemo, during a spinal tap. He will have to continue to get chemo treatments until about 2 weeks before he goes back to Duke to get his CAR-T cells. (CAR-T cells are the modified version of his own white blood cells that were collected Monday - that will find and destroy those leukemia cells.)

Tuesday, September 15, 2015

Quiet is the loudest time

I really should be asleep but it's nighttime.. and it's quiet.. and this is when I hear all of thoughts in my head the loudest. This is when I feel the magnitude of the aching in my heart. The past 2 days have been exciting and scary and overwhelming and everything in between...and I'm just...exhausted mentally, emotionally and physically. But there's no break in this fight, and the circus in my mind continues non-stop.

I am not looking for comments or sympathy or anything else here.... just trying to redistribute the weight of this load.

First Bone Marrow Aspiration and Spinal Tap at Duke

Everything went well with BJ's first bone marrow aspiration and spinal tap here at Duke. Anesthesia has worn off and he's awake, and ate his bagel. The ECG was done shortly after he woke up, so as soon as he can sit up, we can collect our things from the Ronald McDonald house and head home.

BJ and I both follow the updates on other cancer warriors in our area. Most of them we know or have seen them while we are at the hem/onc clinic or inpatient at Levine Children's Hospital

Today I heard from the father of the little girl who just completed the study that BJ is just starting. She is cancer free. I am so overjoyed for her and her family, and excited about the real possibility of BJ having the same result. Dalton is fighting tumors. Tiffany is fighting this disease too. Sam is a fighter and was just able to start Kindergarten yesterday. There are so many others. 

And then there's Elijah. His family needs your prayers for strength, as they were given bad news today. We weep with them and our prayers are with them and our fellow fighters.

September 15, 2015

We had another nice night at the Ronald McDonald House - Durham.

BJ is feeling good this morning. There's a little bruising on his left arm that was stuck twice, but it doesn't look that bad.

No food or drink since midnight last night and we are already back at Duke this morning for IV fluids, anesthesia, a bone marrow aspiration and spinal tap at 11am to withdraw CSF.

He will be able to eat something when he wakes up. Then at some point today, he'll have an ECG and we can head back home!

The Loudness of the Night... September 15, 2015

I really should be asleep but it's nighttime.. and it's quiet.. and this is when I hear all of thoughts in my head the loudest. This is when I feel the magnitude of the aching in my heart. The past 2 days have been exciting and scary and overwhelming and everything in between...and I'm just...exhausted mentally, emotionally and physically. But there's no break in this fight, and the circus in my mind continues non-stop.
I am not looking for comments or sympathy or anything else here.... just trying to redistribute the weight of this load.

Monday, September 14, 2015

Pheresis of White Blood Cells

The pheresis just finished. BJ did great as always, even though they had a little trouble getting into his veins this morning. It was 16 gauge needles...very big. It hurt, but he breathed through it and stared into my eyes like he usually does when he's nervous about something. It has taken 4 hours to do this process of collecting his white blood cells. No getting up, no moving arms for 4 hours. He's awesome. Just tired. I'll post more later.

BJ is so relieved that the pheresis is done. It was a long day, as we got there at 8am and the pheresis was finally finished at 4pm. His arms are sore but he is doing good, just very tired. He was worried about what it would feel like, and didn't sleep well last night. He was extremely nervous about the needle sticks and sitting there for 4 hours like that. The build up alone is exhausting, and then to spend the day with tubes in your arms, and being as still as possible was just over the top. Of course he isn't complaining about anything. He just says he is glad that part is done.

Future Navy SEAL

This was super cool... 

A former Navy Seal sent BJ a package containing a Frogman tshirt, a challenge coin, a seal patch, and a Trident that he wore in battle. 

BJ was truly speechless. 

He wrote a note to BJ, and said when he gets his own Trident one day, he would take his back. He also said to treat this cancer like a terrorist and kick it's ass! 

Seals Rule #1... NEVER GIVE UP! 

I think BJ has this concept down pat! 😊 

So, with the 2 challenge coins he already has (Naval Academy and Air Force), he is also carrying the trident and Seal coin into every visit and procedure.