Friday, December 4, 2015

What do you do

What do you do ...

...when your son, with shaky, trembling hands, writes a question on his white board... Is everything ok?

...when he looks deep into your eyes, knowing that you're not telling the truth, so he writes... Are you sure?

...when he reaches out both arms, as steady as he can, wanting your hug, wanting your reassurance...

...when you succumb to his hug, and all you can do is cry into his shoulder, holding what feels like warm skin covering bones.

...when all you can tell him is "all I know is that everything will be ok"

...when your daughter sends you a text that says ... "Mom. I'm sad."

...when you feel everything crumbling around you and you can't stop it...You can scream, you can cry out...GOD!!! ....PLEASE!!! HEAL HIM PLEASE!!!.... PLEASE HEAL HIM!!! and every last ounce of your soul pours from your eyes.

...when all that's left to do is trust...trust that God knows the plans he has made, and that those plans are good.

...when all you can do is done


Thursday, November 12, 2015

Promises and Defeat

So disappointed when I saw what time it is...laying here awake since 0220. It was a rough day yesterday here at Duke. I just really felt defeated after hearing about Elijah's death and that Simon wasn't doing well. I had to tell BJ about Simon and Elijah. It was even harder when I saw that he had chosen to wear Elijah's orange prayer warrior t-shirt yesterday. BJ was very upset...then completely pissed off. He feels like it's the doctor's fault for giving up on Elijah. Elijah was taken off his trial when they realized his tumors had grown so much. BJ has asked me if he would be taken off this study he's on. And I'm sure all of that runs around in his mind....will that happen to him too.  It just crushes me to see this. I reassure him that I will never give up on him. Never. We have such a strong bond, that we know what the other is thinking just by looking at each other. He looked at me, stared for a few seconds and then shook his head in acceptance of my promise. I knew what he wasn't saying. These kinds of things...We don't talk about to other people. It's between us and we are like glue, holding each other up. Just yesterday at clinic after receiving more disappointing news, he said mom... I know you're going to anyway, but try not to worry. I told him I would try.... 

Tuesday, October 13, 2015

The struggle within


He doesn’t get me. At all. Not many people do. Sometimes I wish he could crawl into my brain and hear the things that I say to him. Things that I wish he knew, but that I just can’t put into words. Things I can’t hear myself say out loud. Instead, we clash. Over and over. If I could speak the words, I’d tell him I’m scared. I’d tell him I’m falling apart on the inside. I’d say the words behind my tears. I’d tell him my fears, but my fears are what keep the words from being said. I can’t say the words. I sure do feel the feelings, and think the thoughts, but the words just won’t come out. Even when there is opportunity, even when he is asking, I just can’t speak it, but the things I would say are spiraling in my mind. It frustrates him, it angers him, because I won’t talk. He doesn’t understand me, he doesn’t know how to handle me, or handle this situation. That’s what he’s told me. But this isn’t his kid, and as much as he cares about my kid, it’s not his own. That deep connection isn’t there. I know he’ll never understand, and could never even get close to understanding how this really feels. I wonder if he felt the same feelings, the same anguish as I do, would he process it the same way. Would we connect then…but that’s not even a guarantee.  People, parents, process this kind of trauma in different ways.  I wonder how he would handle this if it were his kid. At least then, he would know to give me more slack in the range of emotions I feel, not put extra pressure on me with things he says, and understand that sometimes I just want to be quiet, or just need time to myself. I don’t have many moments by myself. Maybe that’s why I feel so depressed lately. I recently heard a saying “You can’t pour from an empty cup.” That’s me right now. I’m all poured out. Every ounce of energy I have is given to put up this front to my kids and the outside world, that everything is going to be fine. Everything will be great by Christmas this year. I just have a hard time fully believing that. I can’t. I have done that once. Once was enough. Once was too much. If I had kept up my guard, maybe this all wouldn’t hurt so badly. Maybe I wouldn’t have felt such a gut-wrenching, breath-taking blow. Maybe I wouldn’t be still walking around in a fog, in a surreal world, where nothing is fair, where there is loss and tragedy surrounding you constantly. It’s a tough world to live in. It’s a world that most people can visit and leave anytime they want. Not us. Nobody knows what this world feels like unless they have lived it with their own child. Dropping by in September for childhood cancer awareness month isn’t the same as being here every day of every month of every year. It’s there when we go to bed, there in the middle of the night, in the early hours of the morning, there when we wake up, and every minute of the day. It’s constant. It’s been constant for 3 years now. Maybe I should give myself a break and be ok with allowing myself to feel…just feel. And maybe work on that refill.

Tuesday, September 15, 2015

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.

Thursday, June 25, 2015

Strong...

Strong...it'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 works...how 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. 

Sincerely,

Michelle Love

Friday, June 12, 2015

Hiding behind 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...




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.




Saturday, May 30, 2015

BJ STRONG!!


Reminding myself just how strong my kid really is! This was recorded 10 months after his initial diagnosis, during some pretty rough chemo treatments. He couldn't wait to get back out on the football field with his team, so when conditioning training began, he wanted to go work out. He is the bad ass bald boy who just wouldn't quit!!



Video was taken 7/24/2013

Tuesday, May 26, 2015

A Mother's Love


For the past 2 1/2 years, we have been forced to have strength that we didn't know was possible. BJ is still rock-solid. I haven't quite recovered from the blow of that news Friday. I've had fewer moments of resolve the past 5 days, and more crumbling underneath the weight of it all. Today has been the worse day. After last night's nausea, and him waking up feeling bad, I had one of those, 'cry til you throw up' mornings. I'm sure I'll find myself again, I just wish someone would tell me that it's all going to be ok.




Monday, May 25, 2015

This nightmare

My son has Leukemia. It's not a bad dream, it's real. I do know that, but it still doesn't cut through this fog I'm in. It's survival mode. It's autopilot. It's brutal. I have to stay strong, and most of the time I am. We're going to get through this. I know that, but what I don't know is what each day will bring. Friday was absolutely horrible.

Saturday, May 23, 2015

Well, here we go again....It's Round 2.

May 22, 2015.

Another one of those dates that I'll never forget.

"It's leukemia."

Seven months from BJ's journey end date. Seven months. The cancer is back. We're all just completely devastated. It was his monthly chemo/doctor exam day, and it started like it always did. Port accessed, blood drawn for labs, and some saline before the vincristine infusion. Dr. Kaplan came in and did his exam, and BJ looked good. When the blood work came back, Dr. Kaplan saw some irregular cells, and at first he thought that maybe he had mono. BJ had been sick that week with a pretty bad upper respiratory type of virus. He never had a fever, but he felt bad enough that it kept him in bed over the weekend, and out of school for three days.

We left the clinic that day waiting on a phone call from Dr. Kaplan to let us know if BJ had mono, or if those cells were leukemia. We picked up Carly from school early, and went to get both her and BJ's hair cut. We were on the way home when the phone call came in. Carly didn't know that we were waiting on news because BJ didn't want her to worry. I answered the phone, and it was Dr. Kaplan. He said, Michelle, it's leukemia. I just slumped in the seat. I know I responded to him, but I couldn't even think. I felt weak. I felt like someone had stolen my breath. BJ saw my reaction and he started screaming "NO!", "NO!"....wringing his head in his hands, punching the car seat between his knees, and more "NO!...."WHY!!??"... Carly started crying and wailing. My heart was just torn to pieces with the news, BJ's reaction, and Carly's cry out in pain from seeing her brother's raw emotion. It's just too much. We've done this all before, and it was a shock then, but this time was different. It was worse. The shock was more devastating, more of a knock down punch that came out of nowhere. We'd dealt with the news of leukemia once. Everything was going great. He was doing great. He was healthy. Hell, two weeks prior, he RAN a 5K in 29:01, and then played an entire basketball game a couple of hours later. He was strong. We were making plans - he was looking forward to getting his port removed, and going on his make-a-wish trip. I was beginning to plan a huge party to celebrate his 15th birthday and the end of his cancer journey. There was no inkling of a relapse...it crept up in his body, so slyly, and unbeknownst to BJ, or anyone else, it began to multiply in his bone marrow until it spilled out into his peripheral blood where it was finally noticed.

Since BJ relapsed within 36 months of his first diagnosis, 32 months to be exact, he's considered an early relapse. The protocol now is to do 3 induction phases to prepare his body for a bone marrow transplant.