"If there was never any darkness, we would never see the fireflies."
These beautiful words grace the cover of a card sent to Cutler and Gabe by Cutler's aunt Shelly. They hold special meaning for the two of them and they so perfectly capture the lesson that we have learned and continue to learn anew. Some people call them lighting bugs, some prefer fireflies. Our little girl used to call them "starbugs" and I always thought that this was a particularly delightful moniker because it reminds us of the innocent awe that we had as children, when it seemed to us as though the magical insects brought to earth a tiny peice of celestial light. So many of our friends and family have lit up the darkness for us in these past days with the bright twinkling of their love and support. It has been a dazzling and humbling thing to be a part of, much like the awe of watching fireflies dance gracefully through the night. The light of our loved ones has been nothing short of celestial. They have been our starbugs, for sure.
If I thought I was busy before May 1, I have since learned that I had a lot more down time than I used to believe; down time that has now been taken up with filing paperwork, chasing down medications, talking to billing departments and hospital social workers and and filing more paperwork. Not to mention helping Cai with her jewelry orders (www.moonribbons.com). Life is a whirlwind of activity and I barely have time to worry about anything but completing the next step. I try to focus on the things that I CAN do. I can't control what happens inside Cutler's brain and I can't control what happens in Gabe's. I can't control what their diseases do to either of them. What I can control is having the paperwork needed for Cutler's discounted Zofran prescription completed and sent in, I can make sure that they get to their doctors appointments, I can sell tickets to the Carolina Mudcats Game our friend, Christy, has organized, I can make sure Cai's orders get shipped....
These things keep me very busy, but they also keep me sane. The give me steps to focus on. They break the war down into small battles that, with preserverance and strategy, can be won. And what else is there to do besides pray and do whatever has to be done? One day last week I felt very overwhelmed by it all, there was just so much to do and I still have to be a normal mom, still have to work full time... I'm trying to relinquish responsibility where appropriate to others who offer to help, but that's not easy. I feel like if I'm not doing most of the work, I'm being lazy or unhelpful or taking advantage of others' kindness. I have to remind myself that people WANT to help! The night is full of starbugs, but I have to let them shine!
Speaking of being busy, Cutler isn't able to tolerate a lot of activity; he has frequent seizures and the chemotherapy makes him feel like he has the flu. He likes warm sunny days because he can get outside and toss the ball with Gabe or relax in the community pool with the children. He's often too sick to eat more than one meal a day. But he's in good spirits! That counts for a lot!
The mystery of Gabe's unresponsive ACTH levels may have been solved! It turns out that the pills he has to take hurt his throat to swallow, so Gabe has been spitting them out when we're not looking! We talked to the endocrinologist today and she thought that explained an aweful lot! They'd been practically drowning him in steroids and saw no results! We're going to be switching to a liquid form of hydrocortisone, which is not only much easier to swallow, but a lot harder to surreptitiously spit out. We have to get the medication directly from the hospital pharmacy because, his doctor explained, some versions of liquid hydrocortisone are untrustworthy. We're going down to his original dose of 5mg three times a day in the hopes that, if it's actually getting into him, he won't need such high steroid doses. He's still on the itty bitty arc on the growth chart, but he's gaining a little weight, finally!
Cai's final round of bloodwork has been sent off to John Hopkins and we should know in a month for sure whether she is a carrier and whether she is Gabe's bone marrow match. The first round of lower-level testing looked good, but now she will have DNA testing and high-resolution HLA typing.
One thing that has been remarkably helpful was joining an ALD support group. When I started this blog, I must admit, I felt pretty alone. This diagnosis is very frightening and no one, not even many doctors, seems to know what it is. When my sister told her pediatrician that she needed to have her son tested, the pediatrician had to google it (blessedly, my nephew does not have ALD). When I spoke to my doctor, she had never heard of it, either. I've mentioned elsewhere on this blog that internet searches can yeild bleak results. So, imagine how heartening it was to be invited to a group where not only are there other parents who understand exactly what we are going through, but some of whom have boys who are asymptomatic or have mild symptoms! If that's not hope, I don't know what is!
Between old friends and new, family and even strangers, we feel so uplifted, hopeful, and loved. Whether they're coming over to dance with me, hosting a fundraiser, donating to our cause, offering advice on mixing crushed pills with applesauce, selling tickets, working on Cai's site, saying a prayer, or just reaching out to say "you're not alone," they have all been our starbugs: our lights in the darkness, the beauty and delight in all of this. Thank you. I could never, ever say it enough. A million times, thank you.
Friday, May 24, 2013
Friday, May 3, 2013
Cancer
Some days, it's just so hard to keep faith. On Wednesday, May 1, our family found out that my husband Cutler - Gabe and Cai's father - is facing his third battle with brain cancer. After three years of being "A Survivor," of clear scans and celebrations and handshakes with exhultant doctors, and just on the heels of such devistating news about Gabriel....THIS.
The men in my family really have something against birthdays. Gabe's hospitalization that lead to his ALD diagnosis happened on his 10th birthday this past February 3rd. Cutler's first brain surgery occurred on his 23rd birthday: September 30, 2005. Back then, we had no idea that he had a tumor and when he became sick, it was like the whole world stopped turning and collapsed. A grand mal seizure at work led to his diagnosis of a large anaplastic astrocytoma in his right temporal lobe. His first surgery was at Wake Med, performed By Dr. Robert Allen. Dr. Allen did a good job and took out 7 cm, but he left behind 2cm that were too close to an artery for his comfort in operating. The hope was that the little piece of tumor was low-grade and would be stable for at least the next 10 years. The tumor appeared stable to his doctors at Raleigh Neurology, but they couldn't get Cutler's seizures under control despite ever-increasing doses of seizure medications. In January of 2009, we got a second opinion from the experts at Duke. They saw that the tumor was growing and that it may have been encroaching upon an inoperable area. The famous Dr. Allen Friedman, the very same who operated on Ted Kennedy, did Cutler's second brain surgery on February 2, 2009- the day before Gabriel's sixth birthday. The tumor they removed was a grade 3 (on a scale of 1-4). For the next year, Cutler underwent chemotherapy and radiation at Duke and, in 2010 was cancer-free. The seizures disappeared and Cutler was eventually able to return to a normal life and work at the end of 2011.
And now this. Another tumor. There are moments when I feel so broken.
Cutler and I will have been married for 13 years this fall and he has been my best friend for at least the past 15. We've been together almost half of our lives. He's everything I could ever ask for and I just can't imagine having the strength to get up in the morning without knowing that he is there. People keep telling me that I'm the "rock" of the family, but if that's true it's only because Cutler is the foundation I rest on. I can't say enough good about him. He's funny, kind, and he has a blunt sarcastic style that fits me just fine. He likes good music (most of the time) and we can laugh at the worst D rated movies Hollywood has to offer or cry together over the most touching. He loves theater and good musicals. He doesn't dance, but he likes the art. He doesn't sing, but he tries anyway. He's ridiculously strong and he feels closest to God when he's outside. He can cook eggs like nobody's business. He's the kind of guy who stops when he sees someone broken down on the side of the road and who will go out of his way to help a stranger. There isn't anyone I would rather spend my time with, no one I'd rather hang out with at the end of a long day. He's a good and loyal friend and I think he's our children's favorite parent. And he loves me with all of his might for all my faults, quirks, and craziness.
Sometimes I'm so afraid that we have it so good because God didn't intend to let me keep them; that maybe he's giving us decades and decades of love all crammed into a smaller time frame. I desperately hope this isn't true, but it's the fear that haunts me.
Cutler had begun to have seizures again this spring. We both knew something was wrong. He said it was just stress because of everything going on with Gabe, but we both knew better. He'd been weaned down to MRIs every 6 months because of how stable he has been. Last time, he went alone because the news has always been good, but this time I insisted that I go with him to the check up. He kept telling me I didn't need to go, but we both knew he was going to need moral support; if for nothing else but to be told he had to go back on seizure meds.
I don't remember all that happened very well when his neuro-oncologist came in with the news because I took a moment to have a small mental break down and processing what was happening ground to a slow crawl. She said that there had been a change on his MRI, a "new swelling" that was causing the seizures, and that he was going to have to start treatments again. There were hugs all around and she told him that he is family and they will take care of him. I just cried. If we're fortunate, a year of daily chemotherapy will be enough. A social worker came in and spoke to Cutler about affording his treatments and the unlikelihood of him being able to continue to work. The financial aspects may well be one of our biggest challenges. Even if Cutler can somehow continue to work, his treatments will be outrageously expensive. If he can't continue to work, we face the problem of not being able to pay the rent and other bills. It's not looking up for him continuing to work.
We had to break the news to the children and debated on how much to tell them. We always tell them the truth and this time was no different. They already knew something was wrong. They knew dad was having seizures again and they knew we'd been at the hospital for much, much longer than usual. When I told them to sit down so we could talk, our daughter said "he has brain cancer again, doesn't he?" Gabe ran to his room to cry. We decided to have a nice dinner out - our last like this for a long time. Cutler thinks he will go back to being a semi-vegetarian since it served him so well last time and we don't know how long it will be before we can afford to eat out again. We talked about what lies ahead: another year of chemotherapy and another year of being broke. Our daughter spoke with wisdom beyond her age when she relplied "we've been poor before, we can do it again." Gabe sobbed and hugged his daddy all night. He made him a special charm out of baked clay and a card that said he's scared for him. They just have so much on their plates, my strong little children, and I hurt for them that they have so much on their shoulders and so much to be afraid of: loosing Gabe, loosing dad, sickness and doctors and treatments that make you even sicker for a while.
I'm really not that strong, I just don't have the option to break. Friends ask "don't you just cry yourself to sleep at night?" The truth is that I do sometimes. I'm so afraid. I'm so selfish - I want to keep Cutler and Gabe forever and I don't know how I'd manage without them. I ask "why" sometimes and I've been known to say over the past two days "why can't I just have NORMAL problems?"... but I don't dwell on it too much. Asking "why" and demanding answers and saying how unfair it is doesn't do anything except prolong your suffering. All we can do is Keep Going. Just keep putting one foot in front of the other. Do the paperwork, file the insurance, file for grants, ask for help, go to work, take the medicine, get the bloodwork. Just keep going. I feel guilty asking for help, but we've been here before when it was just Cutler sick. With both Cutler and Gabe going through treatments, the mountain we have to climb is so high. All we can do is gather our gear and climb and accept help along the way.
We will be doing some fundraising to try to help meet medical and living expenses this year. We are so grateful for the support network that we have, the love that friends give us, and the help people send our way. If you can and are so moved, would you please consider making a donation to help our family get through the hurdles this year? Please pray for us. Thank you
www.youcaring.com/medical-fundraiser/beating-cancer-and-adrenoleukodystrophy/57162
The men in my family really have something against birthdays. Gabe's hospitalization that lead to his ALD diagnosis happened on his 10th birthday this past February 3rd. Cutler's first brain surgery occurred on his 23rd birthday: September 30, 2005. Back then, we had no idea that he had a tumor and when he became sick, it was like the whole world stopped turning and collapsed. A grand mal seizure at work led to his diagnosis of a large anaplastic astrocytoma in his right temporal lobe. His first surgery was at Wake Med, performed By Dr. Robert Allen. Dr. Allen did a good job and took out 7 cm, but he left behind 2cm that were too close to an artery for his comfort in operating. The hope was that the little piece of tumor was low-grade and would be stable for at least the next 10 years. The tumor appeared stable to his doctors at Raleigh Neurology, but they couldn't get Cutler's seizures under control despite ever-increasing doses of seizure medications. In January of 2009, we got a second opinion from the experts at Duke. They saw that the tumor was growing and that it may have been encroaching upon an inoperable area. The famous Dr. Allen Friedman, the very same who operated on Ted Kennedy, did Cutler's second brain surgery on February 2, 2009- the day before Gabriel's sixth birthday. The tumor they removed was a grade 3 (on a scale of 1-4). For the next year, Cutler underwent chemotherapy and radiation at Duke and, in 2010 was cancer-free. The seizures disappeared and Cutler was eventually able to return to a normal life and work at the end of 2011.
And now this. Another tumor. There are moments when I feel so broken.
Cutler and I will have been married for 13 years this fall and he has been my best friend for at least the past 15. We've been together almost half of our lives. He's everything I could ever ask for and I just can't imagine having the strength to get up in the morning without knowing that he is there. People keep telling me that I'm the "rock" of the family, but if that's true it's only because Cutler is the foundation I rest on. I can't say enough good about him. He's funny, kind, and he has a blunt sarcastic style that fits me just fine. He likes good music (most of the time) and we can laugh at the worst D rated movies Hollywood has to offer or cry together over the most touching. He loves theater and good musicals. He doesn't dance, but he likes the art. He doesn't sing, but he tries anyway. He's ridiculously strong and he feels closest to God when he's outside. He can cook eggs like nobody's business. He's the kind of guy who stops when he sees someone broken down on the side of the road and who will go out of his way to help a stranger. There isn't anyone I would rather spend my time with, no one I'd rather hang out with at the end of a long day. He's a good and loyal friend and I think he's our children's favorite parent. And he loves me with all of his might for all my faults, quirks, and craziness.
Sometimes I'm so afraid that we have it so good because God didn't intend to let me keep them; that maybe he's giving us decades and decades of love all crammed into a smaller time frame. I desperately hope this isn't true, but it's the fear that haunts me.
Cutler had begun to have seizures again this spring. We both knew something was wrong. He said it was just stress because of everything going on with Gabe, but we both knew better. He'd been weaned down to MRIs every 6 months because of how stable he has been. Last time, he went alone because the news has always been good, but this time I insisted that I go with him to the check up. He kept telling me I didn't need to go, but we both knew he was going to need moral support; if for nothing else but to be told he had to go back on seizure meds.
I don't remember all that happened very well when his neuro-oncologist came in with the news because I took a moment to have a small mental break down and processing what was happening ground to a slow crawl. She said that there had been a change on his MRI, a "new swelling" that was causing the seizures, and that he was going to have to start treatments again. There were hugs all around and she told him that he is family and they will take care of him. I just cried. If we're fortunate, a year of daily chemotherapy will be enough. A social worker came in and spoke to Cutler about affording his treatments and the unlikelihood of him being able to continue to work. The financial aspects may well be one of our biggest challenges. Even if Cutler can somehow continue to work, his treatments will be outrageously expensive. If he can't continue to work, we face the problem of not being able to pay the rent and other bills. It's not looking up for him continuing to work.
We had to break the news to the children and debated on how much to tell them. We always tell them the truth and this time was no different. They already knew something was wrong. They knew dad was having seizures again and they knew we'd been at the hospital for much, much longer than usual. When I told them to sit down so we could talk, our daughter said "he has brain cancer again, doesn't he?" Gabe ran to his room to cry. We decided to have a nice dinner out - our last like this for a long time. Cutler thinks he will go back to being a semi-vegetarian since it served him so well last time and we don't know how long it will be before we can afford to eat out again. We talked about what lies ahead: another year of chemotherapy and another year of being broke. Our daughter spoke with wisdom beyond her age when she relplied "we've been poor before, we can do it again." Gabe sobbed and hugged his daddy all night. He made him a special charm out of baked clay and a card that said he's scared for him. They just have so much on their plates, my strong little children, and I hurt for them that they have so much on their shoulders and so much to be afraid of: loosing Gabe, loosing dad, sickness and doctors and treatments that make you even sicker for a while.
I'm really not that strong, I just don't have the option to break. Friends ask "don't you just cry yourself to sleep at night?" The truth is that I do sometimes. I'm so afraid. I'm so selfish - I want to keep Cutler and Gabe forever and I don't know how I'd manage without them. I ask "why" sometimes and I've been known to say over the past two days "why can't I just have NORMAL problems?"... but I don't dwell on it too much. Asking "why" and demanding answers and saying how unfair it is doesn't do anything except prolong your suffering. All we can do is Keep Going. Just keep putting one foot in front of the other. Do the paperwork, file the insurance, file for grants, ask for help, go to work, take the medicine, get the bloodwork. Just keep going. I feel guilty asking for help, but we've been here before when it was just Cutler sick. With both Cutler and Gabe going through treatments, the mountain we have to climb is so high. All we can do is gather our gear and climb and accept help along the way.
We will be doing some fundraising to try to help meet medical and living expenses this year. We are so grateful for the support network that we have, the love that friends give us, and the help people send our way. If you can and are so moved, would you please consider making a donation to help our family get through the hurdles this year? Please pray for us. Thank you
www.youcaring.com/medical-fundraiser/beating-cancer-and-adrenoleukodystrophy/57162
Subscribe to:
Posts (Atom)