Saturday, October 31, 2015

Chemo for Halloween

Back at Duke Children's Health Center for another long day of fludarabine and cytoxan infusions and the required 4 hours of post-hydration. Before we left here yesterday, BJ got a 2nd unit of platelets. The first unit had only bumped his count to 13k, so it was still too low. He was very tired last night, but he did eat a little pizza and we watched another episode of 'Gotham'. It's a great show. When he was first diagnosed, we would watch back to back episodes of '24' (his choice) on Netflix, until we had watched them all. After that, it was 'Walking Dead'. This summer, he talked me into watching 'Breaking Bad' and 'Prison Break'. Recently, he found 'Gotham' for us to watch together, so we're still in the first season.

This morning, it was hard to get him going, but he struggled through and we got here about 9:30. Teenagers in general are hard to wake up early in the morning...but waking a teenager who has trouble sleeping, has low blood counts which in itself causes fatigue, has leukemia trying to destroy his body, and has just spent 11 hours of the prior day in clinic getting chemo that is destroying his is a real challenge for him. I really wanted to just throw him over my shoulder and carry him to the car.

His first chemo has been started and he is sleeping now. His platelet count is 23, so it's just over the transfusion threshold. His hemoglobin is 8.4, so he will be getting 2 units of blood after the hydration. It's going to be another very long day.


Friday, October 30, 2015

October 30, 2015, Back in Durham

We're back in Durham, arriving late last night to the Ronald McDonald House. BJ's port has been leaking blood since being de-accessed yesterday for his platelet infusion. He's had a port in his upper right chest since Sept 2012 when he was first diagnosed with Leukemia. ((Just a little description of what a port's a central IV line, and allows quick and repeated access to a major vein for drawing blood, giving medications and for chemotherapy infusions. The line from the port is threaded under the skin and into a major vein over his heart.)) In December 2013, BJ's original port became clogged, and he had surgery to replace the old port with a new one. That surgery was 2 days after Christmas. He has continued to have this port under the skin in his chest. To protect his port while playing football and basketball over the past 3 years, he has worn a heart-guard (usually marketed for baseball) in a sewed-in pocket inside an Under Armor compression shirt.

This morning, BJ woke up to a lot of blood in his mouth. His gums were bleeding pretty bad. The 4 x 4 gauze over his port that we put on last night was soaked through with blood. We got over to the clinic about 8:30 this morning. After a quick exam, he was given an ointment to put on his gums to help stop the bleeding. His platelet count today was 5k. ((A normal platelet count is 150k-450k.)) No wonder he was bleeding!! In the 3 years of this hell called cancer, his platelet count has never been that low.

His white blood cell count was 1.3 today. He started a 4-day chemo cycle today that will drop his white blood cell count. He also has received a unit of platelets. Hopefully this will give him the boost he needs, and last a little longer than yesterday's platelet transfusion. He has a very long day here, as he won't be finished with post-hydration until 6:30 tonight. Then we're back here in the morning to spend the day, and all day on Sunday and Monday too.

If you would, please share and invite your friends to like his page. We'd love to gather up a Navy full of prayer warriors! BJ needs those prayers. Thank you!!

Cure For BJ Round 2

Thursday, October 29, 2015

October 29, 2015

BJ had a clinic appointment this morning to check his blood counts. His platelet count had dropped again, this time to 8k, so he is getting a platelet transfusion today. His white blood cell count is up to 1k today, and 22% of those are leukemia blast cells in his blood stream. He is also neutropenic, with an ANC of 100. He ate some breakfast this morning and is feeling ok, just tired.

He's smiling because he just loaded the update on his phone, and there's some new emojis. In particular, there's a "middle-finger up" emoji, and he's laughing at his best friend, Matthew, who he's trying to flip off, but Matthew hasn't updated his phone. Love to hear his laugh.

Tuesday, October 27, 2015

October 27, 2015

Glad to be able to have good news! BJ has been much better today. His platelet count held steady, and he didn't need a transfusion today. The CT scan he had late this afternoon showed marked improvement in his lungs from the last scan on Sept 5. This was wonderful news, because we've been wondering how that was healing. He'll continue to take the anti-fungal medication. He never eats hospital food. Ever. So when he said he thought he would be able to eat pizza, I was all over that. We had heard that Enzo's pizza was good. It's true. Very good pizza, and BJ ate some, and then ate a little more during the night. Because he actually ate, they decided against giving him the IV nutrition. His lips are looking quite a bit better today too, as he's been putting jojoba oil on them several times a day. Today's white blood cell count was 0.5, which is where they would like it to be right now.

He was discharged this evening and is glad to be out of the hospital. He didn't get much sleep last night. Counting on a good night's sleep tonight!

Thank you all for your steady prayers!

Monday, October 26, 2015

October 26, 2015 Clinic appointment at Duke

BJ had a clinic appointment at Duke today for labs and baseline tests before the treatment portion of the trial. He still isn't feeling well today. His platelet count had dropped again so he just finished getting a unit. He has lost 8 pounds since we were here last on 9/15. His lips are cracked open and bleed anytime he opens his mouth wider than just normal talking. In looking at his tongue and inside his mouth, the doctor said it's no wonder he's not really interested in eating. His taste buds are gone, and the beginning of mouth sores are present as well. He compared it to everything tasting like wet cardboard. Thanks chemotherapy for the side effects, but it has also lowered his white blood cell count to 0.4. With that WBC count, he is neutropenic (non-functional immune system).

They decided to admit him today so they can monitor platelets and while he's inpatient, he will receive some IV nutrition to help him gain weight. He will also have a CT scan of his chest to see how his lungs are healing from the fungal infection.

Sunday, October 25, 2015

Fuzzy hugs are some of the best hugs

BJ wasn't feeling well last night or this morning. He didn't have a fever, but was extremely tired and weak. He looked very pale. Even Charlie Brown knew BJ needed a hug.

With the way he looked, I didn't think he should wait until tomorrow's appointment to get checked out. After calling after hours, Dr. Kaplan made arrangements for BJ to direct admit to Levine for blood work.

He got a unit of platelets on Friday but his platelet count had already dropped to 13k, so he will be getting a unit today. We should be headed home afterwards.

We just love the nurses and staff here.

Saturday, October 24, 2015

October 24, 2015

BJ was happy to get home yesterday. He actually ate half of a cheeseburger that Darrell grilled for dinner last night. That was more than he has eaten in the past 4 days combined. He is still very tired and the headache comes and goes, but is feeling better than earlier this week.

He had 2 very sweet cards from students at North Lincoln Middle and North Lincoln High Schools in yesterday's mail, and opened a package that was mailed to him that contained a "Dammit doll" and a very sweet card as well. He thought the doll was pretty funny.

I also wanted to make mention of a very touching, very sweet and thoughtful gesture from a local girl at BJ's school. She wanted to do something for BJ, so she baked cookies and cakes and sold them at a recent football game. She and her mother tracked us down and hand delivered her gift last weekend. Thank you so much Lauren. What a beautiful girl and a beautiful heart.

Today has been a lazy day. BJ is happy though, because he finally found the broadcast of the Carolina Tarheels v. Virginia game. Go Heels!!! 

Thank you so much for your prayers!!!

Friday, October 23, 2015

Re-fuel Platelets

BJ is getting tanked up on platelets again and then he will be discharged! His temp is has been consistently slightly elevated but staying below the 100.4 mark, so it's technically not a fever that would keep him here. He hasn't eaten, didn't get much sleep again last night, and he's still very tired, but glad to be going home soon!

Thursday, October 22, 2015

October 22, 2015 Smiles

Feeling better that smile! ...and LOOK! His hair is coming back!

No One Fights Alone

BJ developed a fever of 101.5 last night, and was directly admitted to the hospital. We got here about 12:30 this morning. He didn't sleep much after that, but he is sleeping now. His doctor thinks that this fever is due to how his body is processing the killing of leukemia cells, instead of being a sign of infection. He was put on IV antibiotic last night, and blood was drawn for cultures, which is standard protocol when you come in with a fever.

His immune system isn't wiped out right now, which is good, and labs from early this morning show more improvement in the decrease in his white blood cell count. Today, the WBC count is 11.7k, down from 18.5k yesterday. The percentage of leukemia blast cells in his blood stream are 53% today, down from 77% yesterday.

Around 4am, he received a unit of platelets because his platelet count had dropped to 11k. He is also on a steady stream of IV fluids to help flush out his kidneys.

He was concerned that this fever would push back the treatment at Duke, but was assured that it would not.

Thank you for your continued prayers. Please also especially remember Tiffany's family Tiffany's Journey as they deal with losing her to cancer, and Elijah Prayers for Elijah as he has had a rough few days. Both Tiffany and Elijah have younger siblings, as does BJ, and it is equally difficult for them to watch this suffering.

If you are able to donate blood/platelets, now is the time. We were told Monday that there is a critical shortage of platelets. Thank you to all those who donate - you are saving lives.

Wednesday, October 21, 2015

October 21, 2015

BJ hasn't felt well today, and continues battling a very bad headache that Tylenol wasn't helping. He would rather not take it, but oxycodone took the edge off. When I checked on him early this morning, he was awake, and said he hadn't slept at all last night. I'm sure that things were whirling around in his mind, just like they were for me.

He had another appointment to get his blood checked this afternoon, and thankfully, the results were better. The rest of the results weren't back yet, but most importantly, his white blood cell count was 18.5k today, down from 43K yesterday. This is good news! We'll go back again tomorrow to check again. Hopefully his WBC count will continue to decrease, and the percentage of leukemia blast cells will also decrease.

Thank you all so much for your prayers!

Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me.
Psalm 23:4

For this child I prayed, and the Lord answered my prayer.
1 Samuel 1:27

My heart

I originally wrote this Dec 13, 2012 during some rough times...Cancer still sucks. BJ is still stronger than cancer.

You are not alone my child
Your body is broken but you will pull through
This pain will only last for a while
And you will be yourself again real soon
Your smile warms my soul
And the depth of your strength is vast!
Your laughter sheds light into this hole
And your determination to fight remains steadfast
With unyielding faith and courage
We'll travel this road we're on
One day at a time we will manage
Fighting together through this night until the dawn
The light will begin to unfold
And the sun will rise once more
Your incredible story will be told
And you'll see what He has in store
So keep your chin up BJ,
And know that we've got your back
The joy comes in the morning
And the sun will shine brightly again, that's a fact!

Isaiah 58:8... "Then your light will break forth like the dawn, and your healing will quickly appear; then your righteousness will go before you, and the glory of the Lord will be your rear guard." (He's got your back BJ!)

Tuesday, October 20, 2015

October 20, 2015

BJ had a clinic appointment yesterday for blood work. His platelet and hemoglobin counts were fine, so he didn't need any transfusions. The good news in those labs ends there.

His white blood cell (WBC) count went from 4k on Friday to 20K yesterday. On Friday, there were 12% leukemia blast cells in his bloodstream. Yesterday, there were 74% leukemia blast cells in his bloodstream. His doctor wanted him back here to check labs again today. In less than 24 hours, his WBC count went from 20K to 43K, and leukemia blast cells from 74% to 82%. That is a huge jump in that short time frame. Physically, BJ has been very tired, having frequent headaches, everything aches, and his appetite has decreased. Emotionally, he is doing ok, but he just doesn't feel very good, which dampens his spirits.

He wasn't supposed to get any further systemic chemotherapy after Oct. 10th due to the restrictions in the protocol of the clinical trial. However, he can't even go another day without doing something to stop the leukemia from taking over. So today BJ is getting a chemo infusion of vincristine and methotrexate at a slightly higher dose than he received the last time. We're all hoping that this will kill enough leukemia until the treatment portion of the clinical trial begins, and hope that it doesn't drop his immune system too far, because he is still under treatment for the fungal infection in his lungs. Doctors are trying to prevent admitting him at this point, but there is strong concern with protecting his kidneys over the next few days. To remain out of the hospital, he'll take allopurinol twice a day and will need to drink 6 20oz. bottles of water each day to keep his kidneys flushed. I'll be monitoring that very closely.

Thank you for continuing to pray for BJ and his fellow warriors. If you'd like to send him a card to cheer him up, the address is PO Box 96 Denver, NC 28037. He's sporting Panther gear for the 2nd day in a row...Very proud of those guys for their win over the Seahawks in Seattle!!

Saturday, October 17, 2015

Last bit of normal for a while

BJ had such a great time Wednesday night at the football game but it wore him out. He had a headache and went straight to bed when we got home. To him, being there, hanging out with his friends, and seeing friends he hasn't seen in a long time was totally worth it.

It was great to see him smiling and laughing!

He had clinic yesterday for labs, and the levels were above the threshold so he didn't need blood or platelets this time! They will check again on Monday.

Hope you all enjoy this beautiful weekend!

Wednesday, October 14, 2015

Orange Out Game

What an INCREDIBLE show of love and support for BJ tonight. We just want to thank everyone for coming out wearing orange and BJ's fight shirts, the cheerleaders with their orange "BJ strong" bows, the people who bought shirts and stickers, and made donations, and everyone who worked hard to pull it all off. We are just overwhelmed, and so very thankful to see it all first hand. BJ hasn't been able to spend time seeing and catching up with friends in a very long time and he was just all smiles. It's amazing what a football game with friends, perfect weather and awesome people will do for your soul. Not only BJ's, but ours as well.

Half time was very special as the entire team, coaches and cheerleaders gathered together in middle field and prayed for BJ. Then orange balloons were released. (I was barely able to hold back tears.) Then BJ was presented with his former NLMS Panthers jersey #74. (Glad I brought tissues in!)

What an incredible, perfect night. We are blessed by so many people. BJ is going to keep fighting this fight and he is going to win this time!!

Messy finger pricks

Finger prick that bleeds out of the band-aid.... 

That's one clue that the platelet count is low. 

Clinic again today and BJ received an infusion of platelets.

Tuesday, October 13, 2015

NLMS Rocks!

We were sent this picture of the rock at North Lincoln Middle School. We love it!! What an awesome show of support for BJ!! A very special thank you to all of the students and staff at North Lincoln Middle. BJ's journey started here 3 years ago, and even though he is a high school kid now, we will always be thankful for the way you have supported him and continue to support him! 

Come out to the "Orange Out" football game between rivals North Lincoln Middle and East Lincoln Middle Schools tomorrow at 5:30pm at NORTH Lincoln High School!!

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.