Monday, November 30, 2015

Monday, Nov 30, 2015 (Day 25 post CART cell infusion)

Monday (Day 25 post CART cell infusion) .... 

Sorry for the delay in giving you a BJ update. Between total exhaustion, watching BJ constantly, and being away from my laptop, this is the first opportunity I've had to focus on writing.
BJ was moved to the Pediatric ICU early Saturday morning for respiratory distress. His oxygen sats (amount of oxygen in his blood) kept dropping even with 6 liters of oxygen flowing through his nasal cannula. His heart rate reached over 200 bpm, and his respiratory rate was in the mid 50s. He was working very hard to breathe. (Normal heart rate for BJ is 60-70 when he's awake; and a normal respiratory rate is 12-18.) As soon as the decision was made, a team from the ICU came over to move him. As they were moving his bed out of the room, he looked at me and said "Mom! I love you more than anything! It's going to be alright! I promise!"
In the PICU, he was put on 40 liters of oxygen through a high flow nasal cannula. This helped bring his oxygen sats back above 90. He was given IV Dexmedetomidine to mildly sedate him. His blood pressure started dropping after the move, so 1000ml of saline was pushed through his port line and a dose of Epinephrine was given to raise his pressure. After the fluids and Epi, he was maintaining a normal blood pressure again. Several IV sites were also placed so they could give him medication without interrupting the TPN (IV nutrition) that was going in through his port line. He had an IV placed in the back of both hands, and on the side of his right big toe. The doctor also put an arterial line in his left wrist, so they could monitor his blood pressure and easily draw blood for labs. The doctor said that if he didn't maintain his oxygen levels, they would have to intubate him and put him on a ventilator. Thankfully, that never needed to happen. After an hour or so, he was calm and his vitals were stable.
When a patient on this clinical trial meets a certain criteria after cell infusion (including low blood pressure and requiring high flow oxygen), a 'rescue' drug called Tocilizumab is given. Giving Tocilizumab calms down the side effects of the release of massive amounts of toxic chemicals that happens during the breakdown of leukemia cells. Tocilizumab will not destroy the modified T-cells. Within an hour of receiving Tocilizumab through one of his IVs, BJ's temperature decreased. At the onset of this treatment, his bone marrow was packed with leukemia, and his peripheral blood also had a very high concentration of leukemia, so when his CART cells started working, they had plenty of targets to kill. BJ's body was the battlefield, and he still has a lot of damage and inflammation from leukemia's last-ditch effort to take him down.
With the addition of Risperdal, and high fevers being gone since Saturday afternoon, the delirium is not as acute and periods of confusion are less frequent. The doctors believe this will completely resolve with time and sleep. His breathing status has also improved over the past 2 days. His heart rate and respiratory rates are almost normal, and he is slowly being weaned from the high flow oxygen. The goal is to be able to move him back to his room in the bone marrow transplant unit, where things are more familiar to him. Hopefully this will be in the next day or two.
BJ continues to require platelet transfusions three times each day and a blood transfusion once per day to keep him at acceptable levels. He will have a bone marrow biopsy tomorrow, which will allow us to see how much leukemia is still in his marrow. Doctors say most likely his marrow will not be completely free of cancer at this point. But BJ is a fighter, his warrior cells are fighters and he only needed the storm of 200k of them (10% of what other kids on this study received) to kick some major leukemia ass. I really wouldn't be surprised all the cancer was gone already. My kid likes to be the exception.

Friday, November 27, 2015

Friday, Nov 27, 2015 (Day 22 from CART cell infusion)

Friday (Day 22 from CART cell infusion) ... Two weeks inpatient at Duke. BJ was started on a small dose Risperdal to bring him out of the delirium, calm his breathing down from a respiratory rate of upper 50s, and slow his heart rate down from reaching 200 bpm. His oxygen saturation started dropping. He had been doing fine for over 24 hours without any additional oxygen. He was put back on a nasal cannula, and to get him back into the 90s, the oxygen was incrementally increased to 6 liters. A chest x-ray and ECG was ordered. The ECG was normal, and the chest x-ray showed some fluid in his lungs again. He continued to need 6 liters of oxygen until the dose of Lasix started working. During the day today, he was weaned down to 4 liters currently. They will continue to wean him down as long as his sats stay above 92. He was put on a cooling blanket this morning, to help lower his temperature, since the IV Tylenol takes a while to make a difference. That has helped him throughout the day, and he did not get up to 106.

This evening, he has been uttering words, and more of it was making sense. He's still not speaking clearly, but I can discern a few of the things he says. His room here is a very light blue, and at one point today, he was trying to raise up off the bed. He thought that he was in Carly's room, and his intention was to go to his room. (He isn't allowed to get up by himself, for risk of falling.) A few minutes later, he knew he was in the hospital. Later on, he said 'cracker' so we got him a cracker. He tried to eat it, but then didn't want it. His taste buds are damaged right now, as his mouth got in really bad shape with dryness over the past week. He has had dried blood for several days in the crevasses in his teeth, and clots all inside his mouth from either it cracking open or him biting his tongue or cheek. His platelet count has stayed very low, even with transfusions, so he is at risk for bleeding. I asked him if he wanted some ice cream. He shook his head yes, so I went to the cafeteria and got some. He ate three small spoonfuls. This is progress. He hasn't eaten anything in 2 weeks.

He had another port issue today. Somehow, the cap came off of his IV line, disconnecting the platelet infusion. There is a high risk of infection with central lines so there are lots of precautions taken. Once again, he had to be de-accessed, site cleaned, and accessed with a new .75" port access needle. The picture below is a section of the September CT scan of his lungs done while his port was accessed. He thought it was cool the way you can see the port and the needle in his chest wall.

The research lab results from Days 12-14 came back today. BJ's doctor finally got his tangible proof that the CART cells were working. He did acknowledge several days ago, with BJ's extreme drop of white blood cell counts, that the treatment was working. His WBC count today is 0.1. We have so much to be thankful for!

Praying for continued mental clarity, lower temperatures, vitals in normal range. Thank you all for your prayers!!

Thursday, November 26, 2015

Thursday, Nov 26, 2015 (Day 21 from CART cell infusion)

Thursday (Day 21 from CART cell infusion) ....

Thanksgiving came and went, and I hope it's another day that BJ won't remember after all this is over. He still isn't aware of very much, just like every day of the past week. He was still suffering from withdrawal symptoms (fast breathing, fast heart rate, widening pupils, irritability, anxiety, stomach cramps, diarrhea, nausea, vomiting, yawning, sweating), and toward the evening, it worsened. He became very agitated. They had just started a blood transfusion around 3pm, when he pulled hard on the IV line that was accessing his port. When he pulled, the .75" needle came out of his port, so the blood transfusion had to be stopped, and his port area had to be cleaned and immediately reaccessed so it wouldn't clot. If his port were to clot, he would have to have surgery to replace the port again. 

Thanksgiving night, he became delirious, and panicked. His doctor said the delirium was caused by a combination of very high (106) fevers for the past 2 weeks, not sleeping, and all the medications to control pain and nausea. He keeps getting platelet transfusions multiple times each day. Today, his white blood cell count is 0.2. It's still amazing to see it this low.

I turned on the Panthers/Cowboys game, but he was not in a mental state to really watch and participate like he usually does. Even opening a package sent by Damione and Silvana Lewis, and showing him the signed Thomas Davis jersey didn't get through to him. He has received other mail and packages that he hasn't opened yet, because he's just not able.

It's hard to go so many days without having conversations with BJ, laughing with him, and seeing that sparkle in his eyes. He still doesn't know that his CART cells have kicked major leukemia ass....and I can't wait to tell him, and watch his face as the realization sets in.

Thankfulness...I'm thankful for BJ and Carly, my husband Darrell, my inner core of friends that are my family, my incredible Medic family, medical staff that care for my son, and countless friends, family and strangers who are lifting BJ up, and who also lift me up as we take these steps through very scary and uncertain places. Most of all, I'm thankful to God, who sent his own son, who innocently suffered and died, so that we could be with him one day.

And I thank him...every day...for another day with BJ.

Wednesday, November 25, 2015

Wednesday, Nov 25, 2015 (Day 20 from CART cell infusion)

Wednesday (Day 20 from CART cell infusion) ...

BJ had a short period of time where he was speaking more clearly today. It happened after he had been off of the Dilaudid drip to get a platelet transfusion and a dose of the anti-fungal medication for his lung infection. His doctor agreed to cut the dose in half, and see how things went. After being hooked back up to the pain medication, BJ started vomiting. I called the doctor back in and he agreed to stop the drip and leave the PCA (button press for a dose of pain medication) for times when he needed it. Even though he wasn't on Dilaudid very long, he started experiencing withdrawal symptoms. He also struggled with 2 separate periods where his temperature went up to 106 degrees. With the high fevers, he is needing platelets more often. He received a second platelet transfusion in the afternoon. He is still sleeping most of the day and night, but when his temperature climbs, he is very restless. The sleep is not quality sleep by any means.

His white blood cell count continues to drop. It is very apparent at this point, that it will continue to drop. The midnight value was 0.9k, and at noon, it was down to 0.4k. There is definitely a growing, super-charged Demolition Team of angry CART cells moving everywhere inside his body looking for leukemia cells to destroy. The high temps are a sign that they are still finding plenty of the enemy. The main concern, now that the WBC is headed in the right direction, is to get BJ through these fevers, and support him with blood products, IV nutrition, and other IV medication while this breakthrough treatment is annihilating leukemia's ass. Each little cell that even thought about mutating into leukemia is a target.

Tuesday, November 24, 2015

Tuesday, Nov 24, 2015 (Day 19 from CART cell infusion)

Tuesday (Day 19 from CART cell infusion) ....

Last night was a little better than the night before. It's nice to see some improvement, no matter how small. BJ's body is still working hard. His fever went up to and a little over 106 degrees again. He got a unit of platelets last night, and again today. He also received a unit of blood. BJ still sleeps most of the day and night. He is still mostly in a confused state when he is awake. He did say a sentence today that made sense. He sat up this morning, and I asked him how he was feeling. He said, "I'm tired. I'm really tired....I'm tired." and he laid right back down. He still gets agitated sometimes, but it seems like those intervals are less often as well. This morning at rounds, he would not let the doctor listen to his lungs, or feel for his spleen. His spleen is still enlarged, and he still has visible knots in the lymph nodes in his neck and behind his ears. He's getting a lot of fluid, and the bottom of his lungs had collected some. He received a dose of Lasix, and that took care of it pretty quickly.

His white blood cell count from midnight was 3.4k, and at noon, it had dropped again, to 2k. His doctor said he was very impressed at how quickly BJ's WBC counts are decreasing. It's almost been a week that this same doctor had a dismal outlook for BJ on this treatment. I think BJ has shown him just how strong he is. The doctor thinks that BJ will be in the hospital for another 2 weeks. I know my son. It won't be nearly that long. BJ has already proved him wrong once. I believe he'll do it again.

That's the kind of young man BJ is. Even though he had cancer, he pushed himself harder and harder and played football and basketball, even when he didn't feel very well, even when he was still getting chemo infusions, and spinal taps with chemo, and taking handfuls of chemo pills every night. Right up until his early relapse, he was taking 22 1/2 chemo pills every night. EVERY night. He is a born fighter; and he has proven every day, that he is an overcomer. He stands up to every challenge he faces, head-on, and declares victory. He will not quit. He will not cave. He will not give up. He has stood up to cancer for the past 1,168 days so far. He beat it by not letting it take his faith, his perseverance, his determination, his smile. In fact, it made him even more determined to win the fight. Cancer, you didn't place a good bet with this lovable, laid-back kid. He has never been the weak one you may have thought he was. BJ says that having cancer has made him stronger. Take that, cancer...not what you intended, now was it?!

Cancer whispered to the warrior "You cannot withstand this storm" And the warrior whispered back........ "I AM the storm"

Monday, November 23, 2015

Monday, Nov 23, 2015 (Day 18 from CART cell infusion)

Monday (Day 18 from CART cell infusion) ...

BJ had a rough night last night. His confusion and agitation with everything increases at night. He's very unsteady and weak, so he needs help getting up, and help walking to the bathroom (for balance), but he wants to do everything by himself. He's got super strength, even when he's weak. At midnight, his white blood cell count was 11.9k (awesome!!!), and at noon, it was 11.1k (even more awesome!!!). So, it's pretty clear that the CART cells are in there, battling leukemia cells, and the CART cells are winning!!! He has never stopped pounding, and it really is going to be a Round 2 Knockout!!

His doctor came in today, and was very happy to see the drop in WBC count over the weekend. He was safe to say at that point, that the cells are working. God told me so, and I'm so glad I listened to him! (See November 19th post if you missed it.) Now, his WBC will continue to decline until it reaches near zero. Then, BJ's cells will begin to make neutrophils again, and build back up to a normal level. He still has a long way to go to be able to be discharged.

Today, his mental clarity has slightly improved. His temperature dropped down to 99 this afternoon, but by 4pm, it was back up to 106.2. He received IV Tylenol to help drop that fever down some. He is still on oxygen, dilaudid, and IV nutrients. He received 2 separate platelet transfusions today. He had an IV placed in his forearm this morning, because with everything he is getting intravenously, there's no time to slide in a 3 hour blood transfusion. He was supposed to receive 2 units of blood today, because his hemoglobin was low. After the first unit finished transfusing, BJ sat up, got very agitated, and yanked the IV out of his forearm. He didn't even flinch. I'm pretty sure that he didn't know what he was doing. Instead of putting in another IV, they decided to wait and give him another unit of blood after his midnight labs if his hemoglobin is below 9.

Thank you so much for your prayers! They continue to lift us up!

The pictures are of his crowded IV pole from this morning, and a graph of the changes in his white blood cell counts since Day 3 of CART cell Infusion.

Sunday, November 22, 2015

Sunday, Nov 22, 2015 (Day 17 from CART cell infusion)

Sunday (Day 17 from CART cell infusion)...

It was an exciting 2am lab report this morning when I saw that BJ's white blood cell count was down to 22.6k!! BJ is still in the middle of a violent struggle between two strong forces, and he isn't aware of his numbers yet. I told him, but the words didn't get through the fog. He was taken off the continuous morphine dose, which seemed to not control his pain as well as it had. He is on a continuous dose of Dilaudid now, and we just need to watch him for a while to see how it will work. His afternoon labs came in, and his WBC was 24.5k. Small variances in counts like this are not a concern, so it's still heading in the right direction. His temperature this evening rose to 106.2 degrees, and it was very apparent that he was struggling. It's becoming more difficult to rouse him to swallow pills, so sometimes they aren't taken at the most appropriate time. The doc that saw him again today was still pleased in what he saw. Hopefully BJ will have a more restful night. He needs a big block of uninterrupted sleep, and that just isn't happening for a variety of reasons.

Thank you for sharing in the joy of these decreasing white blood cell counts. Please keep praying. This fight is not over yet.


22.6k white blood cells!!!!! 22.6k!!!!!

This is AWESOME!!!! Thank you all so much for your prayers!!! It's working!! We waited and it's working!!!!! Thank you Jesus!!!

Keep the prayers coming please!! He still has a long way to go but we will get there!!

Saturday, November 21, 2015

Saturday, November 21, 2015 (Day 16) update

Saturday (Day 16) update: 

With the awesomeness of yesterday's noon labs, I was anxiously waiting for the results from the midnight blood draw. My heart started pounding when the nurse came in around 2am with the print-out. His white blood cell count (WBC) was 45.8k. I took a deep breath, and thought..Well, OK. Just breathe. Don't panic. That's still lower than it was a few days ago. BJ was having a rough night with confusion, a rising temperature, and bone pain throughout his body. He has periods of greater confusion, and there are times when he struggles to get the words out that he's trying to say. This is very frustrating and upsetting to him. He hurts everywhere. Just touching him causes pain, so with every blood pressure check, getting up and laying down, repositioning in the bed, he winces. When he is sleeping, he groans. The doctor decided to increase his morphine again, which caused him to itch. They added a very small Narcan dose that should block the itching. The high fever is also causing him a lot of discomfort. He goes from having chills to being hot, and just can't get comfortable. Even with 925mg of Tylenol every 6 hours, it didn't stop his temp from going up to 105 degrees at 3:00 this morning. As the night went on, the more agitated he became. He just didn't want to be messed with, but with every yank of an electrode, or removal of the pulse ox from his finger, the monitor was alarming. It happened off and on all night, because he was so restless and uncomfortable. His noon labs came back, and with it, a sigh of relief, because his WBC was down to 39.8k. A different doctor saw BJ at rounds today, and reassured me that the fluctuation between lab draws was normal, and the values are heading down. He explained that the massive amounts of chemicals being released by the cells in this raging battle inside BJ's body are causing his fever, chills, pain, confusion, swelling, and very fast heart rate. This is what is expected, and this is what they want to see. He also said that the knots in BJ's lymph nodes, which range from gum ball to pea size, are also an expected response. They will continue to manage his symptoms until the fight is over. Before he left, he talked to BJ, laying there with his eyes closed, and reassured him that they had his back in this. He asked BJ if he knew that. BJ responded with a very quiet "mm-hmm". The doctor was pleased that BJ was listening and responding appropriately. He said, "OK then BJ, give me a fist bump, and I'll see you tomorrow." BJ raised his fist, without opening his eyes, and they bumped fists. I'm watching this exchange with happy, relieved tears.

We're still waiting on you God.

Thank you for continuing to pray!

Friday, November 20, 2015

November 20, 2015 The roller coaster ride continues

What a roller coaster we've been on lately. This is going to be a bit long, but totally worth the read. I promise.

On Wednesday (Day 13 from cell infusion), BJ's white blood cell (WBC) count went up to 72k. His doctor came to talk to us about it, and was very pessimistic about the outlook of BJ's success on this clinical trial. Thankfully, BJ didn't fully hear that news, even though it happened right in front of him, as he was still heavily medicated. His doctor also said that he thought we should go ahead and put in the paperwork to transfer BJ back to Charlotte (Levine Children's Hospital) in case it came to that. We needed to have the approval from insurance ready, so that he could get back to Charlotte, and start chemotherapy again if it was determined that this therapy wasn't working. I immediately felt defeated, crushed, completely weighed down. This clinical trial is really BJ's last option. After calming down and thinking more logically, I asked to talk to his doctor again. I asked him to contact Dr. Grupp again, at CHOP (Children's Hospital of Philadelphia), and ask him if BJ's low CART cell count at infusion would make the process take longer. I told him that in my opinion, BJ's white blood cell counts were still in a plateau, even given the rise in the last few values. He still has high fevers, and high CRP and LDH values, which are all signs of the brewing battle. I told him I didn't want to give up on this just yet, that to me, it still looked like it was working, and maybe he just needed more time. If we pull the plug, what's the other option going to be? He agreed to call Dr. Grupp.

On (Day 14) Thursday, actually 30 minutes into Thursday, I was awake, pouring out my heart to God and asking, no, pleading for guidance. I pulled out my Jesus Calling devotional, and read that day's entry. This is what it said:

(November 19)
LEAVE OUTCOMES UP TO ME. Follow Me wherever I lead, without worrying about how it will all turn out. Think of your life as an adventure, with Me as your Guide and Companion. Live in the
now, concentrating on staying in step with Me. When our path leads to a cliff, be willing to climb it with My help. When we come to a resting place, take time to be refreshed in My Presence. Enjoy the rhythm of life You already know the ultimate destination of your journey: your entrance into heaven. So keep your focus on the path just before you, leaving outcomes up to Me.
Wait for the Lord; be strong, and let your heart take courage; wait for the Lord! Psalm 27:14 ESV

More tears came, as I realized I was just given the answer as directly as it could possibly come. And the peace that followed was just amazing. When BJ's labs were back from the midnight draw, his WBC count was 64.8k. So it had dropped, but not to his doctor's satisfaction. He still had a glum look, and said he would need more tangible proof that the treatment was working. He said, in lieu of the test results from the research lab showing the presence of CART cells in his blood, he would need to see a significant drop in BJ's WBC count. I told him I still believed it was working and that I felt we needed to give this more time. The noon lab draw showed BJ's WBC down a little more, at 57.1k. The doctor came back in later that afternoon to let me know that Dr. Grupp had called. His advice was to wait until we get the Day 10 and Day 14 labs back, and do not pull BJ off the study. He also said that the low cell infusion would make this process take longer. Carly's 11th birthday was also that day, and we talked openly about BJ. She also believes that he is going to make it through this. She said her only birthday wish was that BJ would get better.

Friday (Day 15)...Today's midnight lab draw showed another small drop in BJ's WBC count, at 50.8. He is still having high (up to 104.5) fevers, still somewhat confused, and is sleeping (or trying to sleep) most of the time. He is still on TPN and lipids (IV nutrition and fats), and is still needing about 3.5 liters of oxygen. The morphine drip was decreased, and that has helped some with his mental alertness. BJ's noon labs came back this afternoon and his WBC is now 32.5k. ((Let me say that again...32.5k!!!!)) The nurse and I hugged each other, and tears of complete and utter joy started flowing. I have NEVER been as happy to see a set of numbers in my life! The nurse told BJ the news. He looked at me and I told him again. He understood, and started to cry. I think what he mumbled was "finally". He reached out his arms, and I hugged him, and we cried together.

So, while his doctor is still cautious to say that this huge drop in the WBC is an objective indicator that the CART cells are working, I fully believe. How can you not believe it, with everything else matching the symptoms, and seeing a 39.5k drop in WBC count over the past 48 hours? He did say that with the super high Ferritin levels, BJ will still continue to have high fevers for several more days. Things are headed in the right direction. I believe that BJ really is going to beat this.

In BJ's words....."Finally".

Much love and gratitude to all of you who follow his fight, think about him and continue to pray for BJ to kick this cancer once and for all. There is power in prayer!

Thursday, November 19, 2015

Remembering: "Cancer Made Me Stronger"

I pull up this video every now and then, just to remind myself that we have survived the past 3 years, and we will continue to press forward until all of BJ's cancer is gone. A memory is attached to every picture, and picture after picture, all these memories pile on top of each other at once. The range of emotions is overwhelming, and I cry and cry. It's therapeutic really. Today, watching this again, I see every picture and remember every moment, but now, instead of ending at him standing in the infusion room, I can see the ending of his story doesn't end with cancer!

The song is "I Lived" by OneRepublic. It's a perfect "fight" song for BJ, because with everything he's gone through (and continues to go through) with his fight against leukemia, he can say "...with every broken bone, I swear I lived."

Tuesday, November 17, 2015

High Temps - November 17, 2015

BJ is still cooking. His temp goes up and down all day and night, still reaching 104, and down to 100. His white blood cell count fluctuates between blood draws at midnight and noon. His WBC count at midnight last night was 60k, and at noon today it was 42k. We want to see that number continue to come down. His blast percentage is at 96%, which gives us a further degree of anxiety, but is not something his doctor is concerned about right now. His platelet count took a dive from midnight to noon, going from 41k to 28k. He just realized his gums were beginning to bleed again, so he'll be getting a unit of platelets shortly. With the presence of bleeding, they won't check the level, but will just order a unit, and he'll get the transfusion.

Since Sunday night, BJ has had blurred and double vision, and seeing flashes of light. He had an MRI last night and there was nothing abnormal. Dr. Martin ordered a voriconazole trough level today, and it was high. It should be between 2-6. It was 10. A 'trough' is the level of the medication in the blood before the next dose is taken. Voriconazole is the anti-fungal medication BJ has taken since August when he contracted pneumonia from breathing in aspergillus fungus spores while immunocompromised. Dr. Martin discontinued his IV voriconazole until it's back in the normal range. The high reading could be contributing to the vision problems, nausea and vomiting he has been experiencing the past couple days. He was also very lethargic, had some decreased mental status and slept most of the day yesterday. That seemed to be a little better today, but he is not yet entirely mentally alert.

Today, Dr. Martin decided to start BJ on TPN (total parenteral nutrition) and lipids, which is IV nutrition and fat. BJ hasn't eaten anything in 2 days. It's important for his new T-cells and for his body to have protein, calories and fat to be able to keep fighting. When he is able to eat, the TPN/lipids will be discontinued. His door was decorated today by Child Life. We opened the door up into the room so he could see it....he approved. :)

Still waging war, and BJ will win.

Please keep sharing his story and keep praying.

Monday, November 16, 2015

CART-19 Clinical Trial Explanation from

This article is a very good, short and non-technical explanation of the clinical trial that BJ is on.


CART-19: A Leukemia Breakthrough

A Main Line Doctor leads the Penn Medicine research team.


Dr. Carl June’s children call him the “Mouse Doctor.” “People would ask them what kind of doctor I am,” says June, who lives in Merion. “They’d answer that I work with mice, and that that’s what the MD stands for.” 
His kids now know the full story—and so will the rest of the world. June’s research has led to the first effective treatment for several forms of adult and pediatric leukemia. With teams at Penn Medicine and the Children’s Hospital of Philadelphia, June has created genetically reengineered immune cells that target the CD19 antigen. Treatment with chimeric antigen receptor-modified T cells—or CART-19 for short—has led to sustained remissions for many patients with the nastiest forms of the disease: acute lymphoblastic leukemia and chronic lymphocytic leukemia. The results of June’s Phase II clinical trials were announced in late 2013 and confirmed by other medical centers. “It’s not a cure,” June cautions. “But this is the most hope we’ve had for finding one.”
CART-19 doesn’t require surgery or hospitalization. The several-step process begins with leukapheresis, which extracts immune cells (T cells) from the body. “The patient sits in a chair with IVs in each arm,” says Dr. David Porter, part of the CHOP team and Abramson Cancer Center’s director of blood and marrow transplantation. “Through one, blood is pumped out of the body and sent into a machine to separate T cells from other cells. The blood returns to the body through an IV in the other arm.”
Uncomfortable but not painful, it takes about four hours. Only 1 percent of the body’s T cells are removed, so the immune system is not compromised. 
After leukapheresis, the patient heads home, and the T cells go to June’s lab. There, they are purposefully infected with a virus that triggers a response in them. They grow stronger and multiply, bulking up into an army of T cells. The process takes two weeks, during which the patient undergoes several rounds of chemotherapy to rid the body of its exhausted T cells. The mega-strong T cells are then infused into the patient, and they go “hunting” for leukemia cells. “Think of a leukemia cell as having Velcro on it,” Porter says. “The new T cells have another piece of Velcro. Once they stick, they become highly activated killers, eliminating the leukemia cells.” 
And the T-cells get stronger with each battle. Unlike other reengineered cells, these keep growing after they’re inside the body, often multiplying as many as 10,000 times. “They’re like a living drug,” says Porter.
There is, however, a potentially dangerous side effect: Cytokine release syndrome is the body’s inflammatory response to those juiced-up T cells. It results in high fevers, muscle and joint pain, dangerously low blood pressure, and breathing problems. Immunomodulators are effective in blocking interleukin-6’s damage, but the Penn Medicine team is looking for other solutions. 
June’s CART-19 discovery fuses two halves of his career: leukemia and HIV research. “At a 40,000-foot view, the issue with both diseases is that they disable or kill T cells,” says June. “I thought, ‘What if we use part of one disease to kill the other?’ It’s how we started using an inactive form of the HIV virus in the leukemia research. Now we can grow T cells to replenish the body’s immune system.”
FDA approval for CART-19 will come upon completion of Phase III clinical trials. In the meantime, June and his team will focus on two goals: duplicating the treatment to make it available at medical centers around the world, and researching how to make CART-19 work for other kinds of cancers. 
And that’s where Novartis comes in. The pharmaceutical giant has licensed CART-19 from Penn Medicine. In exchange, the company is building a state-of-the-art lab at Penn called the Center for Advanced Cell Therapies. “I’m looking out my window at the cranes,” June says. “That’s where the next phase of my career will begin.” 

Sunday, November 15, 2015

The Warrior Battles The Cytokine Storm, Day 3

Update on BJ...Over the past 36 hours, BJ has kept a fever between 102 and 105. Friday night into Saturday morning was rough, as his temp kept climbing, and we were anxious about how bad this was going to be, and how his body would respond. Tylenol was given every 6 hours, but did not lower his temperature. His temp stayed between 103 and 105 until about 0430 Saturday morning, when several readings were around 103. It was then that he finally slept for a few hours. He is nauseated and is still having very bad bone pain. His dose of oxycodone was increased from 5mg to 10mg for the pain. He was offered a continuous dose of morphine, with additional PCA, but he declined. He chooses to tough it out, even when his doctor tells him he doesn't have to. He has been on oxygen since Friday night because his O2 sats were dropping into the mid 80s. He had a chest x-ray which showed some fluid in his lungs. This didn't surprise the doctor, because at that point, BJ had received 1.5 liters of fluids. His blood pressure was being monitored every 2 hours overnight last night, and he also received a blood transfusion. His blood pressure has fluctuated between a little high and a little low...nothing that would cause alarm, but is being very closely monitored. His temperature is still between 102 and 104. He received Lasix this morning, to help remove some of the fluid. He looks very 'puffy'...eyelids and face are noticeably swollen, and he can feel it in his hands and feet as well. He will get another unit of blood if his blood pressure drops with the removal of the extra fluid. His spirits are up, although he is VERY tired. He told me that while he feels really bad, and his bones hurt with every move, the pain he experienced in August with the fungal infection in his lungs was 100 times worse.

We've had some good news on his white blood cell counts. The past few values have not continued the previous doubling per day! Instead, the values seem to have plateaued. We're cautious to celebrate just yet, because we still need a few more readings. (I've put a graph of the WBC readings as of yesterday afternoon for other 'numbers' people like me.) However, with the high temperatures, ineffectiveness of Tylenol on the fever, extreme flu-like symptoms, the rise in his c-reactive protein and lactate dehydrogenase (LDH) values, coupled with what seems like a plateau in white blood cell counts, Dr. Martin is also saying that this could be a sign of the ongoing warfare between the T-cells and leukemia cells.

First thing this morning, BJ double-checked what time the Carolina Panthers play the Titans today. He doesn't want to miss this game. He is back asleep right now, and I really don't want to wake him, but he doesn't want to miss watching his Panthers win again!

Thank you all so very much for your fervent prayers! We are standing firm in belief that BJ will be healed.