Madi update: Seize the day
Last week, after an exhausting evening of trick-or-treating, Madi returned home to sort her candy. As she sat down, flushed and tired, she faded out for a few minutes. Kurt and I asked her if she was ok, to which she responded yes, she was just tired. However, over the next few minutes, she started speaking more slowly, then had a hard time stringing words together, then couldn't say how old she was and struggled to walk. By the time she was in the car on the way to the hospital, she couldn't say her name, was fading in and out, and started vomiting all over herself. Kurt rushed her to Mt. Auburn (the closest hospital to us). We knew seizures were a possibility, but since this episode seemed so... un-seizure-esque (no shaking / seizing), we were very concerned it was something more sinister. One of the few published case reports on using immunotherapy for pediatric glioblastoma described how the drug caused brain hemorrhaging in a 10 year old girl, who then died from the bleeding.
As I was flitting about gathering clothes and comforts to take to Madi at the hospital, I heard Nicole (our most wonderful short-term live-in babysitter) trying to calm William upstairs who was screaming, "I want my mommy!" I suddenly realized the other kids were probably terrified since they don't often see Kurt and I so visibly shaken without any explanation. I called them all together, gave them hugs, and told them something was going on with Madi's brain. We weren't sure how serious it was or what it was, but we needed to get her to the hospital right away. I admitted that Dad and I were a little scared, but that I felt like things were going to be ok. We knelt and prayed. I was so terrified, I could hardly keep from crying, but as I started to pray, I felt the most empowering peace come over me. It was not like peace I'd felt in the past, it was like... Super-peace :); like a peace that could do stuff. I suddenly could not cry and felt filled with warmth. I spoke with an authority that belied how afraid I felt. I prayed that the windows of heaven would be opened for us, that Madi would be healed completely from what was troubling her, and that angels would be present for each of my children that night to comfort them and help them sleep. It was by far the most quiet prayer we have ever had in this house! :) I could feel the children settle and Nicole texted me about 10 minutes later saying all the kids were asleep. Bedtime NEVER happens so quickly and effortlessly, so I felt that alone was miraculous. I keep asking myself why I don't ask for angels to put my kids to bed every night???
The super-peace stayed with me as I drove to the hospital in time to see Madi loaded into an ambulance on their way to MGH. Kurt followed behind in the car. I hopped in next to her and once again found myself in an ambulance, wondering if this was the last day I would spend with my sweet Madison. She was beginning to get some of her speech facility back, so I kept her chatting and tried to encourage her to say her siblings' names and ages. We laughed and joked and talked about Harry Potter. I felt again like I wanted to cry, but couldn't. The amazing peace was stopping me.
When we arrived at MGH, they knew they needed to get a clear sense of what was happening. They couldn't get her into an MRI fast enough, so they did a CT scan just to see if there was bleeding in the brain. She needed an IV first, so that meant the dreaded NEEDLE. This is the first time since her surgeries that she has had to do it without any kind of numbing or prep. We knew it was going to be a struggle. She was also still vomiting intermittently (also a first since before her first surgery), so I did not know how everything was going to play out. They couldn't find anyone certified to put a needle in a child's port. They also could not seem to locate any veins in her arm. So they used an ultrasound machine to "go fishing" for a vein, trying to find the vein while watching the needle on the ultrasound machine. While they were setting up the machine, she leaned in and in a small voice said to me, "I'm scared, Mommy."
Every Tuesday, Madi has been taking voice lessons from a dear friend who volunteers her time and her decades of experience teaching children to sing to help Madi develop her talents. What an incredible blessing this has been! It is the one thing in Madi's life right now that is unadulterated joy. Earlier that day, Madi's teacher had taught Madi the song "Hallelujah" (the child- appropriate version from Sing). Madi had been singing it all day. That night, as the nurse fished for veins, she locked eyes with me and sang the chorus with all her might, "Hallelujah, Hallelujah!"(even though it was feeble at times and broken up by intermittent cries of pain). I suddenly felt very moved by the profundity of this 12 year old belting "hallelujah" in the midst of her darkest fear and deepest suffering. So much of what we celebrate of Christ and his mission on earth is joyful; but sacred are moments that allow us to capture a glimpse of Gethsemane and what that joy cost our Savior. It felt holy in that room as she sang. And for the first time that night, I cried. Not out of fear, but out of gratitude. The original song says that love is "a cold and... broken Hallelujah," and after feeling this moment, I think that is just the most beautiful and poetic way of describing a love for Christ.
Over the next hours, we received layers of relief: CT showed no bleeding in the brain. MRI showed no signs of stroke. Around 4am they admitted Madi to the hospital and hooked her up to an EEG machine to try and detect seizure activity in her brain. It was so uncomfortable, she did not get a bit of sleep. The next morning, she had what they call a sub-clinical seizure. There were six neurologists in the room, one parent (Kurt), and - of course- Madi, and nobody knew she was having one! They discovered it later as they reviewed the EEG print-out. So they suspect these sub-clinical seizures were likely happening for a few weeks, and they culminated in a series of really large seizures on Halloween Night. This is in spite of the anti-seizure medication she's been on since the tumor was discovered in April. Apparently the dose just wasn't quite enough.
Once we determined that it was seizures and not complications from the immunotherapy, the doctors felt ok about continuing treatment. All things considered, seizures were the best-case scenario for Madi, particularly since the MRI she had the week before showed that the new tumors we had been worried about (in August) appear to be shrinking. Our oncologist kept saying that the results were "fascinating," and they were "hesitantly optimistic" about the immunotherapy. While we are somewhat encouraged by this finding, we are wary of celebrating just yet. In the same MRI, they also detected two more suspicious spots, which they think are also likely malignant. All four of these tumors are on the margin of the original tumor they removed.
What we don't know:
- whether the August tumors are really shrinking or if it is a pseudo-response to one of the drugs she is taking to control inflammation caused by the immunotherapy drug
- whether the seizures are being caused by new tumors irritating part of the brain or if they are being caused by inflammation, which happens in response to the immunotherapy effectively stimulating the immune system
- whether the two "new" tumors (found in last week's MRI) were there all along and they are showing up because the immunotherapy is working OR if they are genuinely new tumors that have developed in spite of the immunotherapy
What we do know:
- the original August tumors genuinely look like they are shrinking, both from the size and shape of the tumors in the most recent MRI, and also from the MRI spectroscopy (which measures chemical ratios often found in cancer)
- this cancer is very aggressive!
- Madi's mid-December MRI will give us additional information to guide her ongoing treatment
For now, Madi is on massive doses of seizure medication, which is obviously problematic since we can't tell when she is having seizures. We have no idea whether it is working or not. (Is anyone seeing a pattern in our lives right now?) She seems to be stable and still happy, though emotional. There is not a day that goes by that I realize what an immense miracle it is that she is still with us.
p.s. As long as we are counting miracles, I am still pregnant. I'm 39 weeks and the baby is still kicking!
As I was flitting about gathering clothes and comforts to take to Madi at the hospital, I heard Nicole (our most wonderful short-term live-in babysitter) trying to calm William upstairs who was screaming, "I want my mommy!" I suddenly realized the other kids were probably terrified since they don't often see Kurt and I so visibly shaken without any explanation. I called them all together, gave them hugs, and told them something was going on with Madi's brain. We weren't sure how serious it was or what it was, but we needed to get her to the hospital right away. I admitted that Dad and I were a little scared, but that I felt like things were going to be ok. We knelt and prayed. I was so terrified, I could hardly keep from crying, but as I started to pray, I felt the most empowering peace come over me. It was not like peace I'd felt in the past, it was like... Super-peace :); like a peace that could do stuff. I suddenly could not cry and felt filled with warmth. I spoke with an authority that belied how afraid I felt. I prayed that the windows of heaven would be opened for us, that Madi would be healed completely from what was troubling her, and that angels would be present for each of my children that night to comfort them and help them sleep. It was by far the most quiet prayer we have ever had in this house! :) I could feel the children settle and Nicole texted me about 10 minutes later saying all the kids were asleep. Bedtime NEVER happens so quickly and effortlessly, so I felt that alone was miraculous. I keep asking myself why I don't ask for angels to put my kids to bed every night???
The super-peace stayed with me as I drove to the hospital in time to see Madi loaded into an ambulance on their way to MGH. Kurt followed behind in the car. I hopped in next to her and once again found myself in an ambulance, wondering if this was the last day I would spend with my sweet Madison. She was beginning to get some of her speech facility back, so I kept her chatting and tried to encourage her to say her siblings' names and ages. We laughed and joked and talked about Harry Potter. I felt again like I wanted to cry, but couldn't. The amazing peace was stopping me.
When we arrived at MGH, they knew they needed to get a clear sense of what was happening. They couldn't get her into an MRI fast enough, so they did a CT scan just to see if there was bleeding in the brain. She needed an IV first, so that meant the dreaded NEEDLE. This is the first time since her surgeries that she has had to do it without any kind of numbing or prep. We knew it was going to be a struggle. She was also still vomiting intermittently (also a first since before her first surgery), so I did not know how everything was going to play out. They couldn't find anyone certified to put a needle in a child's port. They also could not seem to locate any veins in her arm. So they used an ultrasound machine to "go fishing" for a vein, trying to find the vein while watching the needle on the ultrasound machine. While they were setting up the machine, she leaned in and in a small voice said to me, "I'm scared, Mommy."
Every Tuesday, Madi has been taking voice lessons from a dear friend who volunteers her time and her decades of experience teaching children to sing to help Madi develop her talents. What an incredible blessing this has been! It is the one thing in Madi's life right now that is unadulterated joy. Earlier that day, Madi's teacher had taught Madi the song "Hallelujah" (the child- appropriate version from Sing). Madi had been singing it all day. That night, as the nurse fished for veins, she locked eyes with me and sang the chorus with all her might, "Hallelujah, Hallelujah!"(even though it was feeble at times and broken up by intermittent cries of pain). I suddenly felt very moved by the profundity of this 12 year old belting "hallelujah" in the midst of her darkest fear and deepest suffering. So much of what we celebrate of Christ and his mission on earth is joyful; but sacred are moments that allow us to capture a glimpse of Gethsemane and what that joy cost our Savior. It felt holy in that room as she sang. And for the first time that night, I cried. Not out of fear, but out of gratitude. The original song says that love is "a cold and... broken Hallelujah," and after feeling this moment, I think that is just the most beautiful and poetic way of describing a love for Christ.
Over the next hours, we received layers of relief: CT showed no bleeding in the brain. MRI showed no signs of stroke. Around 4am they admitted Madi to the hospital and hooked her up to an EEG machine to try and detect seizure activity in her brain. It was so uncomfortable, she did not get a bit of sleep. The next morning, she had what they call a sub-clinical seizure. There were six neurologists in the room, one parent (Kurt), and - of course- Madi, and nobody knew she was having one! They discovered it later as they reviewed the EEG print-out. So they suspect these sub-clinical seizures were likely happening for a few weeks, and they culminated in a series of really large seizures on Halloween Night. This is in spite of the anti-seizure medication she's been on since the tumor was discovered in April. Apparently the dose just wasn't quite enough.
Once we determined that it was seizures and not complications from the immunotherapy, the doctors felt ok about continuing treatment. All things considered, seizures were the best-case scenario for Madi, particularly since the MRI she had the week before showed that the new tumors we had been worried about (in August) appear to be shrinking. Our oncologist kept saying that the results were "fascinating," and they were "hesitantly optimistic" about the immunotherapy. While we are somewhat encouraged by this finding, we are wary of celebrating just yet. In the same MRI, they also detected two more suspicious spots, which they think are also likely malignant. All four of these tumors are on the margin of the original tumor they removed.
What we don't know:
- whether the August tumors are really shrinking or if it is a pseudo-response to one of the drugs she is taking to control inflammation caused by the immunotherapy drug
- whether the seizures are being caused by new tumors irritating part of the brain or if they are being caused by inflammation, which happens in response to the immunotherapy effectively stimulating the immune system
- whether the two "new" tumors (found in last week's MRI) were there all along and they are showing up because the immunotherapy is working OR if they are genuinely new tumors that have developed in spite of the immunotherapy
- the original August tumors genuinely look like they are shrinking, both from the size and shape of the tumors in the most recent MRI, and also from the MRI spectroscopy (which measures chemical ratios often found in cancer)
- this cancer is very aggressive!
- Madi's mid-December MRI will give us additional information to guide her ongoing treatment
For now, Madi is on massive doses of seizure medication, which is obviously problematic since we can't tell when she is having seizures. We have no idea whether it is working or not. (Is anyone seeing a pattern in our lives right now?) She seems to be stable and still happy, though emotional. There is not a day that goes by that I realize what an immense miracle it is that she is still with us.
p.s. As long as we are counting miracles, I am still pregnant. I'm 39 weeks and the baby is still kicking!
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