I have nowhere else where I can say this.
Maggie first got sick on September 4th, 2009. It was the start of her first year of high school. She was strong and healthy and ready to start playing field hockey. In 8th grade she had finally had the chance to be a goalkeeper, and she only had 2 goals scored on her all season. She was going to start with an elite training program and had several upcoming national tournaments to look forward to.
The softball coach was chomping at the bit for her to start softball as the varsity catcher.
Then cancer hit.
She's been OT since last April, but she is still suffering the effects - bad neuropathy, loss of muscle from the steroids and inactivity that has left her weak and prone to injury. She's dealing with really bad sciatic pain now that is limiting her.
Maggie is one of those kids who needs sports like she needs air. She isn't "herself" unless she is on the field.
Yesterday she played in her first field hockey game - she was goalkeeper for the second half. She did great - considering where she has been and all that she is struggling with. But she isn't a great player anymore. She let in 2 goals. At the end of the game I heard the mom of the other goalie (the other girl is a senior who has been the goalie since freshman year.) She was talking to another parent and they mentioned the 2 goals scored on our team. She said, "hey, it wasn't MY daughter."
I wanted to yell across the bleachers at her - "NO, it was MY daughter, and I AM DAMN PROUD OF HER FOR EVEN BEING HERE!"
But I didn't. Instead, my heart hurt. And I felt bad and for a second, embarassed, that my child hadn't peformed the way she used to and that her team would feel that. And then I felt ashamed that I even felt that for a second. Another mom came up and put her arm around me, and I told her that 6 months ago Maggie couldn't even walk across that field, and it's amazing that she is out there playing at all. When she got in the car, Maggie told me that she is worried that she'll get knocked down to JV after that game.
I hate cancer.
I struggle so much with being grateful that I have her with me at all, and counting my blessings with all she has, and as a mom, with all that I want for her, and all that I know was taken from her because of this disease. Most of the time, I focus on the postive and I try and celebrate each day. But yesterday I was struggling. Last night I was upset that I couldn't give her back all that she lost. I was sad because as a junior in highschool, she'd be looking back at 2 years of playing , thinking about playing in college, and looking forward to the upcoming national tournaments over the next few months. I was worried that she was sad and missing it all. I didn't say anything about it, but Maggie reads me like a book, and she knew I was feeling bad. She told me to look at the glass half full. She told me that instead of being out there playing at all, she could be six feet under. This from my 16 year old. She is awesome.
Just wanted to write to say, "I get it." Totally get it. You have every right to feel exactly that way. And yesterday I was struggling with the exact same feelings, just with different issues facing my 5 year old child, 7 months OT.
I am SO full of joy, almost all the time, that I still have Elke here with me, to have and to hold (she's going to get sick of me hugging and kissing her soon!). I truly do my best to find the joy in every single moment, no matter how mundane, and mostly succeed. But there are days, like yesterday, when I feel resentful that I am "supposed" to be just overjoyed to have my child with me, and not allowed to feel bad about the fact that she couldn't walk yesterday because she was wailing in pain from neuropathy in her feet, that a recent DEXA scan shows her to be still osteoporotic, and that her necrosis has not regenerated in the least, almost two years after discontinuing steroids. We had to do an ER run last night for copious amounts of blood in her urine. I just want all this to go away.
So I get it. And I've decided that we need to allow ourselves some moments, here and there, to mourn what our children have suffered and what they have lost. We wouldn't be human if we didn't feel this way. And I think the point is, people like you and me really should be allowed to mourn here and there, because we're clearly not the kind of people who will allow ourselves to wallow in it. We have our priorities straight -- we know how incredibly lucky we are to have our children with us at all. We do. And we do our best to just appreciate that simple, but overpowering, fact. As another parent so aptly stated to me recently, I'd rather be going through this than mourning.
BUT, it's hard to describe, but I feel like we live in two different worlds -- with one foot firmly planted in the "normal" world, and one foot that will forever remain in the pediatric cancer world. In that latter world -- the cancer world -- it's so easy to be joyful, and appreciative, of what we have. Nothing is easier. The problems come in that first world, the "normal" one, where Maggie plays GK for the first time in eons, lets a couple of goals in (btw, I have a soccer GK in my family), and someone makes an asinine remark like that. What Maggie has accomplished in the cancer world is incredible -- mind-boggling, honestly. But when we're confronted with comparisons of our kids with "normal" kids, well, they just can't quite measure up. The chemo, and cancer, took care of that. And when that's thrown in your face, like it was yesterday, it hurts. Plain and simple. Let yourself feel the pain, and acknowledge you have every right to. Because I know you'll move on. It's only if you can't that there's a problem. And I don't see that with you.
I am so right there with you. I got a lump in my throat just reading your post. We are almost 8 months OT and I feel exactly the way you do... My heart hurts for Aidan SO HARD some days watching him limp. Watching him struggle to remember simple things. so hard. so hard. so hard. My heart shares your pain and Maggie's. It also shares the joy and pride you feel when they shake us out of that somber mood with something that makes us realize and appreciate that great and wonderful people are created from tragedy too. We have great and wonderful, wonderful kids!
I think what Angela said is key -- great and wonderful people are created from tragedy too. Our kids may never be able to truly "compete" in the areas they shone in pre-cancer, but they've developed such strength, will power and fortitude of character, I have to believe that they will shine, truly shine, in areas that may surprise us (and them). The trick is to have the patience and vision to help them develop in "new" arenas.
I was so saddened to read your post. It is so unfair that Maggie is not doing what she once was. And that life is just so much more difficult than it should be
I can so commiserate. Pete was doing so great last year, even when he was on chemo. But after his relapse I can see that he has lost a lot. Last year at school he could write, and this year he just can't anymore. He can still read, but doesn't have the strength or cognitive ability any more to write. It makes me so sad. But at the same time, I am so desperately relieved that he is here at all.
So yes, I totally agree, I totally hate what cancer takes from our kids. And I think it is a lot harder when they do go off treatment and you aren't so much on the life/death struggle anymore, but on just trying to get them to reach their potential.
It is only so natural to struggle with it all, and I am so glad that we do have places like this where other parents do get it.
By the way, I think that Maggie is just amazing. You have one incredible daughter
I'm so impressed by Maggie's wisdom and her clarity about what's really important. I'm also amazed that she's able to play again--that other team's two goals are nothing compared to Maggie's triumph at being out there again. If you tell her about your post, please let her know how absolutely wonderful we all think she is and how much we love it that she's playing field hockey. I want all of our children to reclaim their lives like that.
I'm also acutely aware of what cancer has taken from them, and sometimes I'm filled with rage over it. And there's just so little to do with that anger. Emma has 3 months (87 days) left of LTM. She was 6 when she was diagnosed, and she'll be 9 when she's OT. I find myself struggling to remember what she was like before dx, and wondering what she'd be like if she hadn't had to go through all this. I've had moments in the past two years of feeling such anger toward healthy, happy children--completely innocent, lovely children who love my daughter--not because of anything they've done or that their parents have said. I've just been furious at their blissfully ignorant enjoyment of something Emma doesn't have any more, a lovely, thoughtless innocence that our children lose pretty quickly during induction.
That's me. Oddly, I don't think Emma experiences it like that. She's pretty clear about how strong she is and that she's gone through things that her friends couldn't have handled with the same bravery and grace under pressure that she's learned over the past 2+ years. She recently made a list of the things that we wouldn't have or wouldn't have gotten to do if it weren't for leukemia. Her list included 3 fashion shows (Fashion Funds the Cure by the Pediatric Cancer Foundation), throwing out the first pitch at a major league baseball game, our new TV (bought in an odd shopping spree brought on by stress over methotrexate toxicity), and her Children's Dream Fund trip to NYC and the American Girl Store. That's a list I would not make, left to my own devices. But her great delight in making her list made me think about what would be on mine. I think my list would be include what Angela says--strong, remarkable people grow out of this sort of struggle. Our children are brave and strong. They've learned to handle set backs, pain, loss. I absolutely hate and resent that they've had to learn it this way, or at all, and at such young ages, but I do think those are character traits that will serve them well in the futures they are struggling so hard to have.
So here's virtual toast (with very high end virtual champagne--the only kind I can afford, having bought that stupid TV) to all of our children--those who are still fighting through treatment, those who are struggling with the aftermath, and those whose battles ended bravely but too soon. And here's to us as well, survivors of a different sort.
You said exactly what I feel. The guilt over not being able to give your child back what they lost and then watching them get up every day and go on. It was five years this June that Emily was dx and this disease is still taking. She had her hip replaced the end of June so it was another summer being home and having to say "no" when her friends asked her to do things. It just seems that things keep smacking her in the face and having to make such life changing decisions. Having been dx with cancer right after Emily- going thru chemo and having to think for the first time in my life about dying (I was 49) - I get so mad that this has been put on her. I want so much to be able to change the course of the last 5 years and people outside of this community have no idea what this journey has done to our family. I am 53 - October will be 5 years since my dx and losing my breast. But I also know how lucky we both are. My husband, older daughter, Emily and I are together and strong.
Thanks for listening - Cindy
This post couldn't have come at a more appropriate time for me! Last night was a hard one. My son was diagnosed with ALL as a freshman. He had just finished his HS soccer season playing JV and Varsity. He was captain of his premiere team that went to Tampa for Nationals. His sophomore year he could barely walk to the soccer field and he just suppported the team, he earned a Varsity letter though because the coach said he would've been on the Varsity team. His junior year he was on JV and Varsity but mainly JV. He never complained being one of only 3 juniors on JV and played his heart out. This year his senior year he is a starting Varsity player but you can see he is not the same player he used to be. It kills him, it's like my husband said, You can see his brain working but his body doesn't do what it wants. He was pulled last night and replaced by a freshman. I don't know what this means for future games but Aj was crushed when he came home. Last night was the first night I saw my husband cry, he knew how upset Aj was. These kids did not ask for this to happen to them and it sucks that they are dealing with the side effects that treatment has left. Yes, we are glad he is here, everyone keeps saying that to us, but a teen doesn't look at it like that and when your child hurts for whatever reason, you hurt. They remember what they used to be able to do and what their abilities used to be. It is heartbreaking to see him go through this and there is only so much I can say to make him feel better. Good luck to your daughter! I know exactly what you are going through as a parent watching your child try so hard to make a comeback.
Boy, I can REALLY relate to this.
Sam was dx in Jan. of his freshman year. Soccer was the only sport he ever played, and he loved it. He played every minute of every game on the freshman team as sweeper, and they won the conference championship among the freshman teams. Our school has a very very competitive soccer program with multiple state soccer championships.
By sophomore year, he was just finished DI, weak, bald, nauseous, and fatigued. He jumped onto the high school JV team , but could barely run. He got into a few games at the end of the season when the JV team was up by a few goals, for a few minutes, but had no stamina or strength on the field. But even still, I was crying just to see him out there. I was so glad to see him even out there. Hell, I was just glad he was ALIVE.
Summer after sophomore year he had the infamous trampoline accident, shattering his knees. In cast and on crutches throughout the summer, and physical therapy rehab throughout the fall. The varsity team won the state championship. He was on the sideline cheering them on, but could not participate. He tried late in the season, but one of his knees blew up with water on the knee from the missing cartilage.
Summer in between the junior and senior years, he was playing on a club team in the spring and summer. We were playing another team, and Sam was defending against their top scorer. He was having a great day, feeling good, in good shape, and was all over this guy, preventing him from scoring on numerous chances. Standing on the sidelines, I heard the father of the opposing team's player, right next to me, say "wow, that number 11 is a great defender." I could not help but tell him -- "yeah, not bad for a kid with cancer, huh?" His jaw dropped. (and we then talked for a while, because he wanted to know the whole story.)
Senior year, he was on the Varsity team, but mostly sat the bench. Did not have a lot of stamina, still in LTM. Sick off and on. Nonetheless, he loved being around the guys, and was constantly cheering them on. He got into a few games for some minutes, one or two blowouts he got in for an entire half (when they were already up by a few goals). I don't recall him getting any minutes in the playoff games. The school once again went to the state championship, losing in the state final this year. I could tell he was disappointed that he could not be out there making a difference. (He heads the ball away from the goal and clears the ball out of the defensive zone with the best of them).
OT at high school graduation.
Sophomore year of college (after transferring colleges up to Tufts in Boston), he made the JV soccer squad. He proved to himself that he could do it, and he got some good minutes in games. Loved playing the game at a highly competitive level.
Ultimately, he decided it took too much time away from studying and other pursuits, and only played club soccer in later years (along with Ultimate Frisbee and on the cycling club). But it has been great to see him get back into enjoying sports, since he loved them so much prior to dx.
So, annie, I can really relate to what you are talking about. I hope Maggie has an attitude that allows her to be mostly pleased about being out there --although I know it will be impossible for her not to be disappointed about not being able to perform up to her previous norm, and her expectations.
It's a hard thing for our kids. They strive so much to be normal, that they don't want to realize that we are just happy they are ALIVE.
But the sports make them feel ALIVE. So I hope she enjoys it.
This really hit me hard during the high school football awards night late last fall. Fall of 2008, Graham was on JV football and really showing some promise to be a solid Varsity player the next year. However, instead of getting stronger as the season progressed, he was getting weaker (we didn't even realize it at that point; one of his buddies pointed it out after diagnosis when he recalled how Graham couldn't bench as much by the end of the season!) Diagnosed Feb '09. He would be inpatient with the HD Mtx treatments during that summer, and talking about how all the guys were starting conditioning for the upcoming season. He'd have every intention to join them when he got out of hospital, but in reality he was just too weak and sick. But, come fall of 2009 he had just started DI, and was at every practice and every game that he wasn't at clinic. He knew there was no way he could play, but it gave him focus and he thrived on the camaraderie. But he worked on keeping himself in shape through the rest of the year, and by last fall we hoped we would get to see him get some playing time.
Now, I can understand that the name of the game is winning, and our son was not the strongest player, but what I will NEVER comprehend is how, even when it is a blowout of a game (I mean ahead by 5, 6, 7 touchdowns- they were a good team!), a coach can be so cruel as to put a freshman in the game ahead of a kid who has been dedicated and supported his team, despite enormous physical hurdles, and as a Senior has only limited opportunities to play anyway! The whole season, from Aug to the Thanksgiving finals, our son got about 5 minutes playing time.
I will tell you, I was so concerned that all his efforts would go unrecognized that I called one of our local news stations just to give Graham a shout out during one of their High School Football coverage shows. They took it up a huge notch and did an entire segment on him! I really felt bad that it was his mommy that got that going (and I was afraid Graham might be embarrassed, but he was happy )
Back to awards night: you have to sit there, applauding the accomplishments of all these young men. Healthy, vibrant, young men. Hard enough, when you know your son should have--and certainly could have, if it were not for the battle of his life- been among them. But then at the very end, they ran a video that somebody put together. They showed our son briefly. Standing on the sidelines. Yes, I was glad he was even there. But I HATED cancer. Again. I couldn't contain myself and left quickly in tears. And I felt very alone because, of course, nobody understands what cancer takes from our kids....
Today Maggie played terribly. Michele, that's exactly it - her head knows what to do, but her body won't do it. She was taken out of the game after several goals and I could see she was really upset. She turned her back to the field and I could see that she was crying. Several of her teammates went over to her and were trying to console her. After the game she came up to me and her eyes were all red. She told me that she needed a hug and when I hugged her she held on so tight!
Then she started telling me how hard it is getting in school because she is having cognitive processing delays. She ran out of time on a quiz in math class - she says she knows it, but it's like her brain is working in slow motion. I've already contacted the school about arranging for more time on assignments but they are taking forever to set up a meeting. I HATE CANCER.
I'm so sad, and PISSED that our kids have to go through. Just need to vent it out so that I can come to terms with it all and moved forward.
Cindy, I'd wondered if Emily had had the surgery. How is she doing now with the hip replacement? I hope that it's helping her and finally giving her some relief! Wow, 5 years for both of you!
This is so very timely for me as well. Jakob is OT but during tx I think we all focused on keeping him alive that I could brush aside the other stuff. During tx he had mobility issues and got AVN--he did see other kids (on tx too) that could keep playing hockey,soccer,basketball during that time but he seemed to be able to shrug it off. Now that he is OT, he still has restrictions due to AVN and brittle bones, he really wanted to re-start Teakwondo (sp?) but combat is off the table which means he can't move up in belt or participate in half the classes. He tried last spring doing part-time but hated the looks of pity from the other kids during testing/combat. I just want him to be DONE with this cancer business. It is so frustrating to watch him struggle to find his new place. Others don't understand that "yes, he's done tx. But he's still fighting the beast " All he wants is to be 14. It breaks my heart to see him standing on the sidelines. He was never an elite athlete and I don't expect that now--I just want him to get his life back. That sounds silly because of course our kids are alive and that's wonderful. I am waiting, somewhat naively, to put cancer behind us once and for all.
After writing that post Aj played and started in another game and he was pushed from behind and fell. He ended up breaking his wrist. So, he is now playing with a huge cast on his arm. Trying to find the positives because he is so upset being that the cast is so uncomfortable. It could've been a leg, and he would be sidelined for the rest of the season, or need a hip replacement like a friend of his from clinic who is only a freshman in college. Last night he started again and I was so happy but you can clearly see he gets tired so quickly. I am looking for positves and am really trying to boost Aj up. It's hard, cause he doesn't want to hear it. He makes no excuses for himself, he is his worst critic. I can't wait till he is OT. By then HS soccer will be over. sigh.... Annie, I feel for you and Maggie. I know exactly how you feel and Aj and Maggie are going through the same thing. It really sucks!! Good luck to Maggie and the rest of her season, I am glad to read that her teammates were supporting her. That is so important. Aj's remember the player he used to be and they respect him and support him so much.
I'm going to offer a another perspective.
Sweetpea has always been an active kid. She was diagnosed the summer before she was to enter high school. She isn't a great runner but was planning on going out for cross country to maintain fitness for winter sports (she's a nordic skier) but mostly because her friends were running. Cancer certainly threw a wrench into that.
Once we got to LTM I was surprised when she expressed an interest in running again. It wasn't easy, as you guys all know. The first season she ran short courses, she would start at the back and head up the course trailing everyone. A coach would be out recording splits and that's where she would stop.
I really can't say enough about how this worked out for her. It got her out with her friends where she could work on regaining her strength in a supportive atmosphere. I think we underestimate the damage that isolation does to teenagers, it was difficult for her to not be doing the same things as her friends. She's a social kid and she needed to be a part of high school life.
And she is getting stronger. Yeah, it happens slowly. But it is happening. She's running again this fall and is doing complete courses, usually finishing DFL, which doesn't seem to matter. She's doing well enough that she can hang for a while with the tail-enders and there is a boost from that.
I know it sounds trite but everyone on the team is learning about how there is more to it than finishing times. I hate what cancer takes from our kids, when I think about how the past years might have gone otherwise it seems like those years were stolen. But I'm not going to shortchange the growth and bonds she's made as a result.