Monday, June 29, 2015

The Real Superhero

It's been an extra early and extra long day for BJ. He started off with blood drawn, IV fluids, physical exam, and then over to LCH for a spinal tap with intrathecal chemo. Then he was wheeled back over to the clinic for 2 chemo infusions and more fluids...and finally something to eat!! It'll end up being a 9 1/2 hour day here today. We repeat this schedule every day this week minus the spinal tap chemo.

He's felt pretty good except for being tired, but he was able to sleep most of the day! He and Carly were given their Camp CARE t-shirt from last week. Great design for their 30th anniversary, and I completely agree.... These kids are the REAL superheroes!! 

Friday, June 26, 2015

Erwinia Shots - 3 at a time

BJ got the last 3 of his 45 Erwinia shots today! We're SO happy that is over! He's also finally feeling better from his procedures on Monday.

His counts are where they need to be, so he's starting up with the next Induction cycle bright and early Monday morning with a spinal tap with intrathecal chemo and then all day long chemo infusions, continuing each day.

Thank you so much for your continued prayers and encouragements!

Thursday, June 25, 2015

Strong...'s a funny word.

Strong, how?

Yep, I can carry 4-5 grocery bags on each arm from the car into the house.

Yep, I can breathe through a stumped toe, or a slip of the kitchen knife into my finger, or even a cross word from someone I love.

But does that make me strong?

Getting past the diagnosis of cancer in my child the first time, until life seemed almost normal....Yeah, I've done that too.

Being hit with a diagnosis of relapse?

Well, I've taken that one in the gut as well, but this is where I crumble.

This is where I have hurt beyond all imaginable hurt.

This is where I've spent days in a fog of doing what is expected, and faking a smile.

This is where I know I can't do it alone. And I remember that I didn't do it alone the first time either. It's funny how the mind it will allow you to forget pain, until something prompts a colored picture in your mind of a certain horrible day, and the twinge of pain that comes with it...then you realize...I made it through all of that.

...We made it through.

I do know that it's not just me, but a greater power within. I will lift up my eyes to the hills, from where comes my help. Psalm 121:1.

Michelle I hope you know how strong I personally think you are. I don't know you, never met you but your positive attitude is inspiring!!

Cure For BJ Round 2  Thanks Denise smile emoticonThe only reason I'm still standing and doing this life is because of the strength God gives me. (BJ will tell you that's why he's so strong, too.) I don't always feel strong, and I have crumbled under this weight quite often, but that happens when I take the worry and the fear back. It's a constant struggle - It hurts your heart to see your child suffering, and to not know how this will all turn out...sometimes it's just too much. When I start feeling like that I just have a frank conversation with Jesus. I know he's always there and he's got this. He's got BJ, and as unfathomable as it is....he loves him more than I do.

My email to Molly Grantham.... "Introduction to BJ"

Hi Molly. I posted a facebook link on your site about my son, BJ, who is beginning another fight with Leukemia before he even finished the first one. He's 14 (in 8th grade at North Lincoln Middle School), and I know he's my kid, but he really is awesome. He was 11 when he was first diagnosed with B-cell ALL. It came after we were trying to figure out why he wasn't keeping up with the other kids at football practice. Putting some of his symptoms together, I thought maybe he was anemic, so I took him in for a quick blood test. The next day, our family doc called to tell me BJ's hemoglobin was 5.8 (it should be 12-16), and I should take him to the ED to find out why. He has always been a healthy kid, so when the doctor told me he had leukemia...I couldn't believe it. 

The first year of his treatment was incredibly tough, but we got through it.  We had close friends that stepped in when we needed them and I had developed a close friendship with a neighbor, who took care of our dogs while we were at the hospital. I have worked at Medic (Mecklenburg EMS Agency) for almost 15 years, and have an incredible amount of support from that side, too. Co-workers donated me sick time so I could still get a paycheck and be out with BJ. BJ was diagnosed 2 weeks into the 6th grade, and missed the rest of the year because the treatments made his immune system too low. But in the fall, he started playing football again for the local rec league - even before the last harsh chemo phase was over. Every practice and every game, I've just watched him, and been so thankful for his improving health, and for finally beginning to see the end of this journey. We were finally on the single-digit countdown...He was scheduled to be finished on Jan 4, 2016. He had 7 more months of treatment. We were both so excited. On May 9th, he ran the Keep Pounding 5K, and finished in 29:01, and then went home to play in his basketball game a couple of hours later. 

On May 22, he had his regular monthly chemo infusion and doctor visit. Dr. Kaplan saw some irregular cells in his blood. He sent the sample to the pathologist, and we left the clinic, waiting to hear the results by phone. We were in the car when Dr. Kaplan called...BJ knew we were waiting on that call. I had picked up Carly (my 10 year old daughter) from school, and had not mentioned anything to her about the extra blood tests. When BJ saw my reaction to Dr. Kaplan's news, he started screaming "No!"..."Why?!"..."No!, no!", and just dropped his face in his hands. Carly didn't know what was going on, but with BJ's reaction, she started wailing. I tried to focus on what Dr. Kaplan was saying, but in that moment, my heart was being ripped to shreds. All I heard was that the leukemia was back.

BJ settled down and we talked about what we were going to do. A few hours after his raw emotional reaction, he was back to being rock-solid. He's been that way ever since. When we left the clinic that day, not knowing what the news would be, BJ said, well, if it is leukemia, there are people worse off than me. In my mind, I know that is true. But I'm really scared this time. Believe me, I have faith in God, an incredible amount of faith, and that's exactly what got both of us through the past 2 1/2 years. I just haven't yet been able to completely give it to him this time. I'm sure that's normal, but when I see the strength my 14 year old son has, I am overwhelmed with pride, and admiration, and fear all at the same time.

BJ has a great deal of support from the staff and students at his school. After we found out that the leukemia was back, we went to his school to get some things he wanted. We were both still upset, and while BJ went back to his classroom and locker, the staff cried while I told them the news. When BJ came back, he told me that he had went to ask some of his teachers if they had any work for him to do, but that he didn't tell them why. The last teacher he went to asked him why he was asking for work. He told me that when she asked, all he could say was "I don't know if I'll be back". He broke down and so did his teacher. Then that teacher gathered his other teachers, and they prayed for BJ right there in the hallway. 

There's so much more, but I'll leave you with this small picture of who BJ is inside his heart. He said to me again, as we were leaving the clinic (Levine Pediatric Hematology and Oncology clinic) a few days ago after having a chemo infusion and his 10th, 11th and12th intramuscular chemo shots... "See mom....there are people who are worse off than me."

I appreciate all of the work you do to create focus on what these kids go through. 


Michelle Love

Wednesday, June 24, 2015

WBTV's Molly Grantham Post: BJ's cancer is back

The email Michelle Love sent about her son, BJ, was written so beautifully it could be published. I’ll do my best to share her story with you. BJ is the newest one of #MollysKids.
No parent with a child battling Leukemia wants the call Michelle Love received May 22.
Cancer was back in her 14-year-old son, BJ.
Michelle was in the car with BJ and his sister. When BJ saw the look on her face he began to scream, “No! Why?! No, no!”
It was one of the hardest things Michelle says she ever endured.
“I tried to focus on what the doctor was saying,” she said. “But in that moment my heart was being ripped to shreds.”
That one exact moment -- in the car with bad news on the other end of a call -- was the most vulnerable Michelle says BJ has been in his three year battle.
How did it begin?
As so many cases we hear, with very little warning.
Back in 2012, BJ was two weeks into 6th grade at North Lincoln Middle School. He started having trouble on the football field. Michelle thought he was anemic but blood tests showed differently. Her always-healthy son suddenly had Leukemia.
Michelle says the first year of treatment was extreme. BJ’s 7th grade year was better. He was back in school and even started playing football again despite undergoing chemo. He and Michelle were counting down the months until treatments would be over.
They were supposed to end in January 2016.
“We were in the single digits,” Michelle said. “We only had eight more months.”
The chemo was hard, but never held him back. BJ’s mom says he never stopped doing what he loved.
In fact, BJ ran the “Keep Pounding 5K” on May 9th and finished with a time of 29:01. That afternoon he played a full basketball game. His spirits were high and he was hopeful.
Just 13 days later… Michelle got that call when driving her kids around. She said BJ was crushed.
“But a few hours after his raw emotional reaction he was back to being rock solid,” she said. “He’s been that way ever since.”
Michelle says BJ’s strength comes from the staff and students at North Lincoln. They're incredibly supportive.
When BJ found out his cancer returned he wanted to go get his work at school... but didn’t want to tell his teachers why he wouldn’t be back in class. One teacher directly asked. He answered. They cried in the hallway together.
“My son’s strength and positive attitude impresses me the most,” said Michelle. “It’s a hard thing to even put into words.”
She also shared this -- as they were leaving Levine Children's Hospital a few days after chemo, BJ stopped her.
“What’s wrong?” she asked.
“See Mom,” he said, “don't feel badly for me. There are many people who are worse off. They need hope more than I do.”
Michelle just wanted to share BJ’s story. That simple.
She hopes he'll inspire someone else the way he's inspiring her.
His Facebook page >>

Monday, June 22, 2015

Need a bigger bed

Today, while we were waiting for BJ to be taken back to the procedure room. 

Yep... His entire foot is off the end of the bed!

Anesthesia Anger

I just watched BJ go under anesthesia again....

I can't even count how many times I've been beside him and watched him lose that fight and go to sleep. It never gets easier to stand there and watch that, and then turn away and leave him there while I wait in another room. 

He's having an LP with intrathecal chemo, and a bone marrow biopsy. Praying for tests to show "MRD negative" .... which would be no evidence (under a microscope) of leukemia in his bone marrow. We should know sometime next week. MRD negative will give him the best chance of beating this stupid disease when he does get his transplant.

Friend time is treasured

BJ had a pretty good weekend. 

Even though he tires easily, he felt ok, and was able to spend some much needed normal-kid-time with his best friend. Saturday was his final doses of prednisone for this treatment cycle, and he is beginning to notice the difference of getting it out of his system. His blood counts are good, so next week, he'll go right into the 2nd treatment cycle. 

We're here at the clinic / hospital today for his exam, 3 more chemo shots, a spinal tap and a bone marrow aspiration. It's a long and tough day for BJ.

On Saturday, we were honored and had the pleasure of a visit from an incredible family who has been down the same road we're traveling. I can't even explain how helpful that was to all of us. We were able to ask them questions, and talk about things that the doctors don't necessarily address. It was so wonderful to see them and see how God brought them through it.

Saturday, June 13, 2015

Spinal tap headache

BJ has been feeling pretty good, except for a headache that developed from the spinal tap he had Monday.

He had 3 shots on Wednesday, and 3 more on Friday - 27 shots in the past 3 weeks.

His legs are sore, so to combat the muscle breakdown from the chemo, we're trying to get more protein in his diet.

He has 18 shots left to go, but what he is looking forward to the most is getting off Prednisone.

Peer encouragement

BJ has SO much support from his classmates from North Lincoln Middle School. I received an email from his teacher letting me know that there was a box in the office for BJ.

BJ opened it to find a 3 ring binder full of notes, handmade cards and drawings from 8th grade students at NLMS.

Thank you everyone! What a blessing!

Friday, June 12, 2015

Can you help me shave my hair?

BJ left me a note on the doorframe of his room Thursday night. 

Friday morning, when I went to wake him up, I found the note, and then quietly went back to my room to cry. 

Hair is such a trivial thing in the grand scheme of things, but it's also a normality, one that at some level disguises the truth...

Monday, June 8, 2015

Strength and Faith

My son. He just confounds me sometimes. He's seen me having a really hard time with all of this, even though I try my best to hide it. 

We were just talking, and he said that he hadn't researched all of this like I had, so it wasn't bothering him as much. He seemed so calm and unconcerned. I told him that was a good thing...if it helps him stay positive to not know all the details, then that's good. 

He said, "well, it's going to be whatever it is....It's not in my control...I can't do anything to change it...It's in God's hands."

He's only 14, and yet, he has so much strength and courage and faith and determination. I am in awe of him. Please pass the tissues...

Finding a match

Back at the clinic/hospital today. BJ has a spinal tap with intrathecal chemo, a chemo infusion, and 3 more chemo shots. His red and white blood cell counts have dropped, and are very low. The level of measuring his immune system, the absolute neutrophil count (ANC) is extremely low at 70. He says he feels ok, but I can tell that he doesn't feel very good. He just doesn't complain until something is very bad.

We found out that his sister is not a 100% match. This wasn't the news we were hoping for, but they did find a few preliminarily matched donors in the marrow registry. They'll be working that end while BJ continues to go through the three induction cycles to prepare him for the transplant.

I just want to encourage you to consider being a part of the BeTheMatch registry. There are blood and marrow drives being coordinated in honor of BJ, and more information on those will be posted as soon as it's available.

Thank you so much for your continued prayers, and words of encouragement...

Kure Beach

BJ needed platelets on Friday, before his 3 shots could be given. His count needed to be 30,000, but it was 17,000, so they gave him a unit of platelets. 

We headed to the beach after BJ's clinic appointment. We all needed some time away, and the beach is the place we all love to be. 

BJ spent his time fishing on the pier and in the surf. Carly spent all day in the waves, and I enjoyed watching them laugh and smile. 

BJ's hair started falling out in handfuls on Saturday, so as soon as we got home yesterday, he wanted it buzzed off. He is constantly hungry and craves buffalo wings this time. 

His attitude is still amazingly positive, even with losing his hair. He said, it's just hair, and it will grow back.

Saturday, June 6, 2015

Not by Sight

When I'm brokenhearted, stumble in my faith, hang my head and ask God why....I'm reminded to always walk by faith and not by sight.

Friday, June 5, 2015

Handfuls of hair

Zofran, platelets and 3 Erwinia shots. 

His hair is falling out by the handful, and still, his spirits are good.

Wednesday, June 3, 2015

Intramuscular chemo shots really do hurt

BJ doesn't complain about much, but he told me tonight that his legs are sore. 

So far, he's had 15 intramuscular chemo shots in the past 9 days. 

Looking at his legs, I honestly don't know how he even stands up.

Numbing help

Platelet count was borderline, but enough to get the shots without a transfusion today! 

Good news as far as the time we have to spend here today. He will get a platelet transfusion Friday before shots #16, 17, & 18.

There's a new lidocaine patch on the market (since March), called Synera, that has made a big difference in the pain level with getting the Erwinia shots. They numb deeper into his muscle, and allows him to tolerate the shots better than using just Emla cream. 

We're so glad that these are available now! BJ has happily given his positive feedback, and hopefully the patches will be suggested and prescribed to other kids going through painful injections.

Tuesday, June 2, 2015

"People have it worse off than me"

Update from the past few days... 

BJ had a good weekend, and felt pretty good. He was able to watch Carly's gymnastics competition, and go to church Sunday. 

Yesterday, we were back at the clinic for 3 more Erwinia shots. He did well with those too. His appetite is raging, due to the 75mg of prednisone he is taking each day. 

We're back at the clinic tomorrow, and anticipate him needing a platelet transfusion. His platelet count was very low on Monday, and if it's under 30,000 tomorrow, he will have to get a transfusion before he can get his chemo shots. 

He's still being incredibly strong about what he is facing. When we were leaving the clinic yesterday, he said,

"See mom...some people have it worse off than me."