Monday, August 27, 2012
I Back Jack
Please take 5 minutes to watch this video.
From Jack Bartosz's CaringBridge today:
"People know me for my happiness. I don't want people to think of me for sadness."
~Jack Bartosz (August 24, 2012)
At 4:15 this afternoon our perfect boy found his ultimate cure.
Jack Thomas Bartosz: October 4, 2001 - August 27, 2012
"And we wept that one so lovely should have a life so brief." ~ William Cullen Bryant
Neuroblastoma claimed this sweet boy today. An average of 7 children are taken by cancer, every single day. September is coming. September is Childhood Cancer Awareness Month. Please don't let this be how Jack, or any of these children's story ends. I will try my hardest to be a hero for these kids. A hero like Super Nate. Will you be a hero too?
Saturday, August 4, 2012
Here Comes The Sun
This is hard to write about, it's hard to relive, but it's part of Nate's story...so, here goes. He sailed through days 1 and 2 of round 3 of antibody. Other than a little coughing here and there and a little fatigue, he had very little side effects the first 2 days. He was up, playing in the play room, wandering the halls and eating well. We didn't even have to push his morphine pump button. By Tuesday afternoon, when I left him with Lou Lou to go home and have dinner with Wes and Ellie and get ready for work the next day...he was starting to get more worn out. When I got back to him Wednesday night, after working all day, he was clearly struggling to breathe. Papa and Grandma said he had a decent day, but his breathing started to go downhill that night after Linde got there. I argued with the nurse and RT until they gave him a breathing treatment, which had helped his coughing on Monday and Tuesday. It helped a little, but the blow by oxygen they were using, wasn't quite cutting it to keep his oxygen saturation up. We got him to wear a nasal cannula oxygen which helped him breathe a little easier and get a little rest. Thursday, he wasn't breathing well at all. He was on 4 liters of nasal cannula oxygen and barely holding steady with his oxygen saturation. If you took the nasal cannula away, his sats would drop quickly. He only had Thursday's antibody to finish. They just wanted to get him through it and once it stopped, everything would start getting better. The infusion ended Thursday night at about 8pm...his breathing wasn't getting better. I spent all day Thursday and Friday sitting in bed next to him, watching him breathe...waiting for it to get better. I didn't eat, shower, sleep or change...I just watched him breathe. I knew in my Mommy gut that something was very wrong...they just kept thinking it would get better now that the antibody was turned off.
It became apparent on Friday that we were not going home as planned. They did a chest x-ray about 4pm on Friday and it showed some congestion, but again, they expected for it to quickly clear up now that the antibody was stopped. We were expected to spend the night Friday night and head home in the morning after the oxygen was weaned down. They tried a different breathing treatment that forces oxygen into the lungs and can help get the junk out, and it seemed to help. We were able to turn the oxygen down to 3 liters after the first treatment. As the afternoon wore on, the oxygen had to be turned back up. It was time for another treatment and the RT got there to do it at about 7pm. While doing the treatment, Nate was very, very uncomfortable. Writhing and kicking around. I couldn't see the oxygen saturation monitor from where I was sitting and trying to comfort him...he started to look blue. His sats should have shot up to 100% during the treatment, instead they dipped down into the 70's. They stopped the treatment and put his nasal cannula back in...his sats took FOREVER to climb back up. The nurse paged the doctor on call. The doctor wasn't answering the page, so they called the assessment team...a step below calling a code. Doctors and nurses swarmed the room, right as Daddy got there to switch me. The doctors quickly made the call to get him down to the PICU.
As I sat on his bed and held the oxygen mask to his face while trying to comfort him, tears streamed down my face as they rolled us through the PICU. I couldn't believe that Nate had RUN into the hospital on Monday, taller, stronger, and weighing more than he has all year...and here we were, right back where we started this journey almost exactly one year earlier. The PICU team quickly went to work trying to figure out what was going on and what they could do to support him. They put him on a stronger nasal cannula machine and tried to make some plans, warning us that intubation was a possibility. Papa and Lou Lou arrived, Nate was fairly stable and we made the decision for me to head home. I was completely beat from the previous two days and someone had to go home to relieve Grandma and Linde, who had been with Wes and Ellie all day. I asked Chris to keep me constantly updated via text and phone. I wasn't there for what happened next, but I am so thankful that Chris's parents were there to support him and Nate. His sats started to drop and they made the decision to intubate. He was intubated, but they were having a hard time stabilizing him. Lou Lou said his sats dropped, then his heart rate, then his blood pressure...he went into shock...we could have lost him. I was at home, getting texts from Chris saying, "My parents are coming to get you. I want you here. He's not stabilizing". I have never once in my life been as scared as I was that night. I ran around my room, threw on clothes and screamed at the top of my lungs. I fell to my knees and prayed. " Lord, please save my baby". I can't imagine what Chris, Lou Lou and Papa were feeling watching it happen. Chris says he is very glad that I wasn't there. The Lord and the doctors did their work and Nate was soon stabilized. I stayed home with Wes and Ellie and Papa and Lou Lou took care of Chris and Nate.
So, what happened? Antibody therapy can cause this. It's called capillary leak and/or cytokine release syndrome. Simply put, the antibody stimulates your immune system to react and in this case, the immune system goes into overdrive causing an allergic reaction and leaking of fluids from where they should be, to where they shouldn't be. The chest x-ray from 4pm showed slight lung congestion. A chest x-ray in the PICU at 9pm showed lungs filled with fluid. At about 11pm, after intubation, another x-ray showed lungs completely filled with fluid. In 5 hours, fluid rushed into his lungs, making breathing on his own impossible...a reaction to the antibody treatment. All we could do now is let the ventilator support his breathing while we waited for his lungs to heal.
He was on the ventilator, hooked up to 14 machines pumping medication into his little body. Every day medications were weaned and changed. We watched the chest x-ray improve every so slightly every day. We attended doctors rounds, watched monitors, and helped the nurses care for Nate's body while we talked to him, read to him, touched him and kissed him. As the paralytics and sedatives were weaned, we did our best to keep Nate comfortable. We had some spectacular RTs that were able to get some major junk out of his lungs with breathing treatments and he really started to improve. By Friday morning, the ventilator setting had been weaned all the way down and Nate was breathing all on his own with the tube still in. His sedative medications were weaned down in preparation for extubation and Nate was awake. He was awake and scared. He couldn't move (restrained to the bed, so he wouldn't pull the ventilator tube out) or talk. I watched his lips try to say "Mommy", and he cried and cried when no sound came out. I tried to comfort him the best I could until they were ready to extubate. We "watched music" on his iPad...all his favorite songs. He even tried "dancing", waving his head back and forth and moving his legs. At about 2pm, they were ready to pull the tube. It was pretty anticlimactic. They pulled the tube out, he gagged, and continued to breathe fine on his own. I told him he could talk now. He was scared. I told him, "say Mommy". He squeaked out a quiet, raspy "Mommy", and I hugged him and cried and cried. The nurse said, "It's ok to cry, Mommy, this has been hard". It was just so nice to hear her say that, to have some permission to let my pent up emotions out.
He rebounded so quickly. I was so afraid that all the good work he has done in the last few months to get so strong would be out the window. Not my super boy. All the doctors were amazed at how quickly he recovered. Honestly, I wasn't that surprised. I know my boy, and I know my God.
He was back on the oncology floor on Sunday and we were home Monday. He had been on VERY heavy duty pain and sedation medications while on the ventilator that had to be weaned very slowly so that he wouldn't have withdrawls. It's been a little rough the last couple weeks, only because we have to give him a sedating medication every 4 hours which hasn't let him get back into a normal sleep cycle. We didn't do much sleeping the first week home. As the doses have been weaned, he has gotten back to sleeping all night the last few nights. He is still a little more sleepy during the day than normal, but we just gave him his last dose of sedation medication tonight, so we hope his energy will be 100% again in the next couple days. His eating never skipped a beat. In fact, I think he's eating more than ever, which I am so, so thankful for. When we checked in for antibody, he weighed 17.1kg, the most he's ever weighed. At clinic on Monday, he weighed in at 17.3kg! His mobility is pretty good too. Almost back where it was.
So, what does this mean for his treatment? I had a good talk with his oncologist on Monday and he will not be doing any more antibody treatments. His oncologist does not recommend it and said the only way they would do any more would be to put Nate in the PICU again, intubate him, give the antibody, then keep him intubated for a week or more afterwards to recover. He also said that next time he would likely not only have lung involvement, but also heart, kidney, liver and who knows what else. No thank you! Nate is the 1st patient at PCH to not complete all 5 rounds. Nate is also the 1st patient in the country to have to stop after round 3 (most kids that have had to stop do so after round 4...the "hardest round"). Leave it to Nate to be the 1st. He's always breaking the mold. I know a lot of people don't quite understand the importance of this antibody therapy. Nate's in remission, right? Why does he need these treatments anyways? The latest studies show that completing all 5 rounds gives kids a 20% greater chance at not relapsing. The more rounds completed, the better the chance of not relapsing. Again, relapsed neuroblastoma has "no known cure". This antibody treatment, while difficult, is a HUGE breakthrough in neuroblastoma treatment. We really wanted Nate to complete the treatment. It's just not in the cards for him. I'm honestly not scared though. I firmly BELIEVE that for whatever reason, 3 rounds of antibody was all that Nate needed.
Nate will continue his Accutane therapy through the beginning of November. At the end of Accutane we will probably be enrolling him in a 2 year, Phase II clinical study for children in remission, It will involve an oral medication with a good side effect profile and travel every 12 weeks for scans. I will give more information as we find out more.
So, where does that leave us? Are we done? We are in a very confusing place. This is not how we expected this to go. Assuming no admissions for infection or fever, God willing, Nate is completely done with hospital stays. Is he done with cancer? Well no, and unfortunately, we are realizing that he never will be. There will always be medicine, maybe more studies (as more breakthroughs are made), scans, blood work, oncologists, hearing aides...there will always be something. We are BEYOND grateful to be where we are. No more hospital stays? Are you kidding me!?!?! It's beyond awesome! It's just that we've been racing towards a finish line all year long and now we're here, looking around and realizing there is no finish line. It's a weird feeling. Chris and I also feel like we've been in prison all year and are now being released back into society. We've spent the whole year living in crisis mode. Only able to look hours and days ahead. Small every day things like, grocery shopping, meal planning, and exercise seem foreign. We've only been able to live "normal" lives involving these "normal" things for a couple weeks at a time before crisis mode kicked back in. Can I actually plant my garden again this fall? Can I sign up for another triathlon? Can I commit to volunteering regularly at Wes's school? I'm almost scared to do these things. Like I don't deserve to be able to do these things or that I will jinx Nate's health status. We've let go of almost everything that seemed so important in the past. Can we add a few of these things back in to our lives? I know we will figure it out. We are taking our time and taking things slowly. How do you go back to living your "old life" now that you are a completely changed person? How do you go about living in this world with your eyes wide open? We will figure it out...and I know it will be even more spectacular than it was before. As Nate and I got into the car on Monday after clinic, and discussing Nate's treatments with his oncologist, "Here Comes The Sun" was the first song that played. Tears welled up in my eyes...here comes the sun, indeed.
He was on the ventilator, hooked up to 14 machines pumping medication into his little body. Every day medications were weaned and changed. We watched the chest x-ray improve every so slightly every day. We attended doctors rounds, watched monitors, and helped the nurses care for Nate's body while we talked to him, read to him, touched him and kissed him. As the paralytics and sedatives were weaned, we did our best to keep Nate comfortable. We had some spectacular RTs that were able to get some major junk out of his lungs with breathing treatments and he really started to improve. By Friday morning, the ventilator setting had been weaned all the way down and Nate was breathing all on his own with the tube still in. His sedative medications were weaned down in preparation for extubation and Nate was awake. He was awake and scared. He couldn't move (restrained to the bed, so he wouldn't pull the ventilator tube out) or talk. I watched his lips try to say "Mommy", and he cried and cried when no sound came out. I tried to comfort him the best I could until they were ready to extubate. We "watched music" on his iPad...all his favorite songs. He even tried "dancing", waving his head back and forth and moving his legs. At about 2pm, they were ready to pull the tube. It was pretty anticlimactic. They pulled the tube out, he gagged, and continued to breathe fine on his own. I told him he could talk now. He was scared. I told him, "say Mommy". He squeaked out a quiet, raspy "Mommy", and I hugged him and cried and cried. The nurse said, "It's ok to cry, Mommy, this has been hard". It was just so nice to hear her say that, to have some permission to let my pent up emotions out.
He rebounded so quickly. I was so afraid that all the good work he has done in the last few months to get so strong would be out the window. Not my super boy. All the doctors were amazed at how quickly he recovered. Honestly, I wasn't that surprised. I know my boy, and I know my God.
He was back on the oncology floor on Sunday and we were home Monday. He had been on VERY heavy duty pain and sedation medications while on the ventilator that had to be weaned very slowly so that he wouldn't have withdrawls. It's been a little rough the last couple weeks, only because we have to give him a sedating medication every 4 hours which hasn't let him get back into a normal sleep cycle. We didn't do much sleeping the first week home. As the doses have been weaned, he has gotten back to sleeping all night the last few nights. He is still a little more sleepy during the day than normal, but we just gave him his last dose of sedation medication tonight, so we hope his energy will be 100% again in the next couple days. His eating never skipped a beat. In fact, I think he's eating more than ever, which I am so, so thankful for. When we checked in for antibody, he weighed 17.1kg, the most he's ever weighed. At clinic on Monday, he weighed in at 17.3kg! His mobility is pretty good too. Almost back where it was.
So, what does this mean for his treatment? I had a good talk with his oncologist on Monday and he will not be doing any more antibody treatments. His oncologist does not recommend it and said the only way they would do any more would be to put Nate in the PICU again, intubate him, give the antibody, then keep him intubated for a week or more afterwards to recover. He also said that next time he would likely not only have lung involvement, but also heart, kidney, liver and who knows what else. No thank you! Nate is the 1st patient at PCH to not complete all 5 rounds. Nate is also the 1st patient in the country to have to stop after round 3 (most kids that have had to stop do so after round 4...the "hardest round"). Leave it to Nate to be the 1st. He's always breaking the mold. I know a lot of people don't quite understand the importance of this antibody therapy. Nate's in remission, right? Why does he need these treatments anyways? The latest studies show that completing all 5 rounds gives kids a 20% greater chance at not relapsing. The more rounds completed, the better the chance of not relapsing. Again, relapsed neuroblastoma has "no known cure". This antibody treatment, while difficult, is a HUGE breakthrough in neuroblastoma treatment. We really wanted Nate to complete the treatment. It's just not in the cards for him. I'm honestly not scared though. I firmly BELIEVE that for whatever reason, 3 rounds of antibody was all that Nate needed.
Nate will continue his Accutane therapy through the beginning of November. At the end of Accutane we will probably be enrolling him in a 2 year, Phase II clinical study for children in remission, It will involve an oral medication with a good side effect profile and travel every 12 weeks for scans. I will give more information as we find out more.
So, where does that leave us? Are we done? We are in a very confusing place. This is not how we expected this to go. Assuming no admissions for infection or fever, God willing, Nate is completely done with hospital stays. Is he done with cancer? Well no, and unfortunately, we are realizing that he never will be. There will always be medicine, maybe more studies (as more breakthroughs are made), scans, blood work, oncologists, hearing aides...there will always be something. We are BEYOND grateful to be where we are. No more hospital stays? Are you kidding me!?!?! It's beyond awesome! It's just that we've been racing towards a finish line all year long and now we're here, looking around and realizing there is no finish line. It's a weird feeling. Chris and I also feel like we've been in prison all year and are now being released back into society. We've spent the whole year living in crisis mode. Only able to look hours and days ahead. Small every day things like, grocery shopping, meal planning, and exercise seem foreign. We've only been able to live "normal" lives involving these "normal" things for a couple weeks at a time before crisis mode kicked back in. Can I actually plant my garden again this fall? Can I sign up for another triathlon? Can I commit to volunteering regularly at Wes's school? I'm almost scared to do these things. Like I don't deserve to be able to do these things or that I will jinx Nate's health status. We've let go of almost everything that seemed so important in the past. Can we add a few of these things back in to our lives? I know we will figure it out. We are taking our time and taking things slowly. How do you go back to living your "old life" now that you are a completely changed person? How do you go about living in this world with your eyes wide open? We will figure it out...and I know it will be even more spectacular than it was before. As Nate and I got into the car on Monday after clinic, and discussing Nate's treatments with his oncologist, "Here Comes The Sun" was the first song that played. Tears welled up in my eyes...here comes the sun, indeed.
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