Kait: When we first met Jake's oncologist, Dr. Katzenstein, he warned us that searching google can be a bad idea. So what do I do? I search on google. At first I was looking to find a kid Jake's age with Ewings sarcoma, dark blonde hair, brown eyes, wears size 9 shoe...(you get the picture) and I wanted to read that he tolerated treatment, had a successful surgery, and was declared cancer free. Obviously there is not a kid in the world that meets this exact criteria. I was never going to find the storybook tale because there are no two situations alike. I can find a boy with a solid tumor in his tibia but he's 17. Or a 3 year old with a tumor in her heel. Or an adult who beat it as a child with flying colors. It finally dawned on me that all of us who are parents of cancer fighting heroes are doing this without a manual, and while another child's fight may be similar, no two are the same. That realization is not a comforting one to me. So, now my google searches consist of finding blogs like ours, of people strapped to a roller coaster with no way to get off. I guess in a way it makes me feel better to know that we're not the only ones who think we are not handling things too well. Sometimes I find some great advice too. One thing I read was from an oncology nurse and she said that in her 20+ years as a nurse, in most cases the parents and family got hammered...the kids did fine. Every day is hell for a while but to a kid it's just a short time and they go on about their business. So maybe Jake won't be emotionally scarred from this. It's entirely possible that I will be the one who is scarred, and I'm hoping to use my scars to raise awareness, raise money, and volunteer. There is no way that my life will ever be the same or that I will ever be able to forget everything that we're going through.
What a small world we live in. I was given a gift certificate to get my hair done (a donation coordinated by Jake's teacher) and I used it this past Friday. After I told Alicia at Utopia Hair Salon all about Jake, she told me that her cousin's young son is fighting a brain tumor. It is unbelievable that there are so many children fighting cancer and I never knew it! These kids live in our cities, towns, and neighborhoods. Did you ever think you would know a kid with cancer? Now that my own son has it I see it all the time. My eyes have been opened to a world that I didn't want to be a part of. A world full of unimaginable heartache, love, stress, tenderness, pain, togetherness, confusion, and support. See the roller coaster? With every negative there seems to be a positive right behind it. I love reading all of the comments posted on here and on Facebook. It makes me feel so good that we have all of this support, and I am proud to be the Mom of a boy who has touched so many hearts. The other day Jake said "You know what, Mommy? I am very brave." Yes, yes you are sweet pea.
Jake had been doing very well since his last treatment until two days ago. He started showing signs of mucositis again and has been in mild to severe pain because of it. He has not had a fever which means as long as we can manage his pain we don't have to take him to the hospital. Lortab and fluids are about the only things we can do to help him which makes it really hard. Mucositis is described as having a sunburn inside your mouth and throat and, in Jake's case, can affect the entire gastrointestinal tract. If he's just sitting watching cartoons he is fine. If he touches a sore with his tongue, swallows, or passes gas he is in agonizing pain. Think of your worst sunburn and imagine someone slapping you on it a few times and you can get the idea of how it feels for him. He is still drinking a little so I'm hoping he is on the uphill slope.
We have an update about Jake's surgery. It was supposed to be on 2/12/13 but Dr. Katzenstein was worried that his body won't have enough time to recover from his next chemo treatment. So we have postponed the surgery to 2/26/13 instead. This will give him a well deserved break from chemo and pokes and give his body enough time to be healthy for surgery. That way he will have the best chance at recovering from surgery quickly so that chemo can resume. As of right now his 6th round of chemo is scheduled for 1/31 (this Thursday) and he will be admitted for 5 days. Thanks for praying for us and for loving our brave boy!
Monday, January 28, 2013
Monday, January 21, 2013
Taking a day off
We knew that Jake would be having a follow-up MRI while we were in the hospital but we didn't know when. So at 6:30am on Friday morning we were awoken and told to head down to radiology because they were ready for Jake. Talk about waking up on the wrong side of the bed! Jake was so cranky all the way until he was sedated. It took about an hour and then he came back to me where he said "I did a great job." After sedation he is very tipsy so the nurse brought a Jake sized wheelchair so that I wouldn't have to carry him. I'm not sure why, but he hates riding in a wheelchair. He screamed the whole way back to our room and was back to being cranky for the better part of the day.
The oncologist making rounds came by to see how Jake was doing, and to play with him for a bit. I asked about the MRI from that morning and he brought in his computer and did an in depth comparison between the first MRI and this one. The first MRI showed a soft tissue tumor surrounding the tibia, lots of splotchy shading up and down the bone, and hair-like cracks extending from the inside of the bone out (which were pushing the "skin" of the bone out). The MRI from that morning showed that the soft tissue tumor was gone, the cracks were gone, the tumor was a little shorter (up and down), and the tumor itself is essentially liquefied. This is what the doctors want to see happening and it means that the tumor is responding well to treatment. This also means that Jake is an ideal candidate for segmental resection and allograft reconstruction without sacrifice of the growth plates or knee joint. This means take out the ruined bone and replace it with a cadaver bone. His leg will grow normally. So, we got wonderful news and we are really happy. All the terrible and hard things about this feel better now that we know it's working. We are so thankful for all of you who have been tirelessly and faithfully thinking of and praying for us!
Two other cool things: we got the pictures back from his photo shoot at the hospital and they are awesome. Here are a few:
With treatment 5 under our belts and a very calm past few days, we are breathing a little easier. Jake has been eating (a ton) and has been feeling good. His teacher, Lisa, said that he was more like his old self: shouting out answers, tattling on other kids...etc. (LOL) The norm for a 3-year-old. At home he has been playing and laughing with Ethan, taking his medicine with minimal complaints, and just being more like Jake. I have hope and faith that we will get through this and get our little Jakers back!
Monday, January 14, 2013
"How's Jake?"
In most of our blog posts we have shared updates about our lives, and some insight into how we feel. It has been a little therapeutic for us to share our world, and more importantly we can open up our world to our friends and family. It helps to see comments and "likes" on Facebook because we know that people care. We see that people now take time out of their day to check on our little man and our family's progress. We've decided that on Facebook we will stick to brief updates and positivity, but on the blog we want to be free to explore our emotions. We need this as an outlet for our grief, and it is a LOT easier to type these things than to say them out loud. If you have advice, a prayer, a thought, anything...please share it with us.
Randy: In all of this we have still remained a little bit guarded, even with some of our more emotional blog posts. When I'm at the shop and people ask, "How's Jake?", I usually say quickly "He's good", and then a few lines where I talk about his upcoming treatment or surgery. I don't make it seem like puppy dog tails and sunshine, but I definitely don't dig down very far to find my answer. This situation is so unique, so rare, and so terrible that I often hide reality. If I did open up and explain how I REALLY felt, I would sound like a pretty unhappy person. I could almost guarantee that you wouldn't want to ask "How's Jake?" again for fear of having to be trapped in that conversation. I don't want to be "that" guy.
The reality is....this is utter hell. I hardly know my son anymore. He's a different boy than the one that was running in the street on October 16th when he collided with Desmond and got hurt. He is nowhere CLOSE to the same, and only once in a while do we catch a glimpse of how he used to be. Kait and I have to administer medicine to him every day in the form of a shot that never goes without one of us holding him down screaming his little head off. He has to drink awful tasting medicine twice a day on the weekend. He screams and we have to hold him down to get him to drink it and sometimes he just throws it back up. This medicine will prevent him from catching a nasty form of pneumonia, so he has to drink it. The rest of the days he take anti-nausea medicine every six hours and pain medicine because the shots make his bones ache. He's 3 and can't be reasoned with. He doesn't understand that without all of this medicine his story doesn't have a chance at a happy ending.
Quite a few friends have said "call me if you need to talk"....but what do I tell them? What do you say when you know that there is no advice. There is nothing anyone can say that will change these realities. We are living out our worst nightmares, every parent's worst fear. We have been thrown into a world that we're trapped in, and there is no exit door. I even hesitate opening up to Kait for fear that it will drag her down even more.
Kait: I have a lot of anxiety. I look into Jake's eyes and see fear, pain, uncertainty, and confusion. I spend the days trying to make him happy while trying not to create a spoiled monster. I spend lots of time, money, and gas driving to restaurants and buying food for him that he thinks he wants. Most of the time it doesn't taste right to him and is a waste. But, I have to try to get him to eat. He is frail and thin. Sometimes he stares off into space and I think the emotion on his face is depression, but he doesn't know what that word means. I think it has to be what he is feeling when he wants to eat something he loved and discovers it isn't good anymore, or he goes outside to ride his scooter only to feel too tired after a couple minutes. I wonder if the changes in his personality will be permanent...and if they are, how will we know if he is the person he was supposed to be before he went through hell, or the person he became because of it? Does it matter? Is it one and the same?
I worry about his upcoming surgery. What and how much do we tell him? Should he just go to sleep and wake up not being able to walk and not knowing why? Will this fact cause emotional problems or trust issues for him in the future? I hope that since he is only 3 that he won't remember most of this. I worry that what he does remember is that Mommy held him down when people were hurting him and forced terrible things down his throat. I googled "how to handle stress when your 3-year-old has cancer, you have a kindergartener, and a baby, and your husband goes to school and works." Even if I break those thoughts up to try for a better result, I still can't find what I'm looking for. How are you people doing this? Randy and I both no longer meet strangers eye to eye because we know why they are looking at us. Why do we care if they look? I used to be the person that smiled to let strangers know it's okay, to make them feel more comfortable. I hate to say that I would rather just look down or at my kids instead. What if I don't have the strength to hold it together? There is no telling what would set the tears flowing. And once they start it takes a good while to stop.
I know there are many people who are in much worse situations than ours. I can't imagine how hard it must be for them if it's this hard for us. We said to each other from the start that we were going to share our story, good and bad, to help raise awareness. When times were rough we were going to be open, even if it meant people thinking less of us. We are doing the best we can with what we have, and hopefully that will be enough. Even though this post has not been the most positive, please don't give up on our story. Please don't read into this blog as us saying our friends aren't helping, because that's not at all what we're saying. We love all of our friends and family, and you guys are helping us in more ways than we can express here. Sometimes there just isn't anything you can say or do.....
Randy: In all of this we have still remained a little bit guarded, even with some of our more emotional blog posts. When I'm at the shop and people ask, "How's Jake?", I usually say quickly "He's good", and then a few lines where I talk about his upcoming treatment or surgery. I don't make it seem like puppy dog tails and sunshine, but I definitely don't dig down very far to find my answer. This situation is so unique, so rare, and so terrible that I often hide reality. If I did open up and explain how I REALLY felt, I would sound like a pretty unhappy person. I could almost guarantee that you wouldn't want to ask "How's Jake?" again for fear of having to be trapped in that conversation. I don't want to be "that" guy.
The reality is....this is utter hell. I hardly know my son anymore. He's a different boy than the one that was running in the street on October 16th when he collided with Desmond and got hurt. He is nowhere CLOSE to the same, and only once in a while do we catch a glimpse of how he used to be. Kait and I have to administer medicine to him every day in the form of a shot that never goes without one of us holding him down screaming his little head off. He has to drink awful tasting medicine twice a day on the weekend. He screams and we have to hold him down to get him to drink it and sometimes he just throws it back up. This medicine will prevent him from catching a nasty form of pneumonia, so he has to drink it. The rest of the days he take anti-nausea medicine every six hours and pain medicine because the shots make his bones ache. He's 3 and can't be reasoned with. He doesn't understand that without all of this medicine his story doesn't have a chance at a happy ending.
Quite a few friends have said "call me if you need to talk"....but what do I tell them? What do you say when you know that there is no advice. There is nothing anyone can say that will change these realities. We are living out our worst nightmares, every parent's worst fear. We have been thrown into a world that we're trapped in, and there is no exit door. I even hesitate opening up to Kait for fear that it will drag her down even more.
Kait: I have a lot of anxiety. I look into Jake's eyes and see fear, pain, uncertainty, and confusion. I spend the days trying to make him happy while trying not to create a spoiled monster. I spend lots of time, money, and gas driving to restaurants and buying food for him that he thinks he wants. Most of the time it doesn't taste right to him and is a waste. But, I have to try to get him to eat. He is frail and thin. Sometimes he stares off into space and I think the emotion on his face is depression, but he doesn't know what that word means. I think it has to be what he is feeling when he wants to eat something he loved and discovers it isn't good anymore, or he goes outside to ride his scooter only to feel too tired after a couple minutes. I wonder if the changes in his personality will be permanent...and if they are, how will we know if he is the person he was supposed to be before he went through hell, or the person he became because of it? Does it matter? Is it one and the same?
I worry about his upcoming surgery. What and how much do we tell him? Should he just go to sleep and wake up not being able to walk and not knowing why? Will this fact cause emotional problems or trust issues for him in the future? I hope that since he is only 3 that he won't remember most of this. I worry that what he does remember is that Mommy held him down when people were hurting him and forced terrible things down his throat. I googled "how to handle stress when your 3-year-old has cancer, you have a kindergartener, and a baby, and your husband goes to school and works." Even if I break those thoughts up to try for a better result, I still can't find what I'm looking for. How are you people doing this? Randy and I both no longer meet strangers eye to eye because we know why they are looking at us. Why do we care if they look? I used to be the person that smiled to let strangers know it's okay, to make them feel more comfortable. I hate to say that I would rather just look down or at my kids instead. What if I don't have the strength to hold it together? There is no telling what would set the tears flowing. And once they start it takes a good while to stop.
I know there are many people who are in much worse situations than ours. I can't imagine how hard it must be for them if it's this hard for us. We said to each other from the start that we were going to share our story, good and bad, to help raise awareness. When times were rough we were going to be open, even if it meant people thinking less of us. We are doing the best we can with what we have, and hopefully that will be enough. Even though this post has not been the most positive, please don't give up on our story. Please don't read into this blog as us saying our friends aren't helping, because that's not at all what we're saying. We love all of our friends and family, and you guys are helping us in more ways than we can express here. Sometimes there just isn't anything you can say or do.....
Wednesday, January 9, 2013
Plans
We met with Jake's surgeon today to discuss plans for surgery. We thought it would be a quick visit but it ended up taking all afternoon. Jake had new x-rays and then we talked with Dr. Oskouei for a while. He said that from the x-ray it looks like the tumor is responding well to chemotherapy and he is confident that he can remove the entire tumor. He will do an allograft, which is replacing the affected area with a cadaver bone and he will use screws and a plate to attach it to the remaining bone. The doctor left the room to check the schedule for surgery and we spent the next several minutes freaking out a bit. For one thing, the tumor is not the size we thought it was. Not that we ever asked, but we assumed from the first x-rays that it was about 2 inches of his tibia just up from the middle. The tumor is actually most of his tibia and in the bone marrow of the tibia! So now instead of picturing that he would remove a couple inches of bone he will be removing all of the bone from one dotted line to the other. (see picture) The dark circle is where a piece of bone was removed in the biopsy. All of the white shaded area is the tumor.
He will have a scar from below the knee to his ankle. Then Randy said "he won't be able to play contact sports," and I just about lost it. He is (was) such an active kid and loves sports so I was really sad thinking about having to keep him away from those activities. The doctor came back in so we could ask more questions and he said "Of course he can play sports. He can sky dive for all I care! He can completely resume normal activity after it heals (in about 9 months)." We assumed that the cadaver bone would act as a rod or a placeholder but it will actually become his bone with blood flow and will act just like it was always his. It will also not effect his growth since the growth plates will not be harmed in the surgery. As in everything having to do with this journey, we were on a bit of a roller coaster worrying about what would happen and how Jake's life would be. But, from today's consultation we are feeling a bit better and we think that the outcome will be a good one. After that, we just continue to kick this cancer's butt! Jake has to get through two more rounds of chemo and provided that there are no setbacks, surgery will be on 2/12/13. Thank you to everyone who has been praying for Jake and for us. We know it's helping and God is listening.
Friday, January 4, 2013
Here's to 2013
So, as you know we didn't celebrate Christmas the way that we had planned. Jake was still in the hospital feeling completely miserable and quite possibly didn't even know Christmas had come. Randy and I had planned to trade off on the evening of Christmas so the rest of us drove to Egelston to have dinner together. Jake would hardly swallow his own saliva, let alone eat, drink, or talk. But, he did want to open presents. We weren't expecting him to be interested in that so we only brought a couple of his presents with us and once they were open he wanted more! He only stayed in the hospital for two more days and was able to finish opening his presents when he got home that Thursday. We would like to take this opportunity to thank each and every one of you who helped make this Christmas a great one for us. You know who you are, and we thank you from the bottom of our hearts.
The next day, Aubrey started throwing up and it proved to be a stomach virus when I started on the same path that Saturday. Unfortunately, Jake, Ethan, Randy, my Mom, and Randy's Mom all followed. Poor Jake had hardly eaten a thing for 10 days straight and it showed. He lost a lot of weight in that short amount of time. He started to feel like eating again on Tuesday and has been doing a good job since. He was admitted for his 5 day chemotherapy treatment (#4) on Thursday (1/3/13) and his weight loss triggered a nutritionist to come check on him. Even though he had been doing better, she changed his diet plan to a high calorie diet, 5 meals a day with snacks in between. I am basically giving him food every 30 minutes all day long...my new full-time job, at least for the next couple days. So far this chemo treatment has been a breeze, and I'm happy to report that accessing his port was actually a tiny bit easier this time.
Randy and I have both been struggling a bit with Jake's appearance. We are so saddened to see him looking so weak and frail. I watched a video of him from his birthday this past June and he looks completely different now. He was such a little boy with a round face and chubby cheeks. He used to be so independent, adventurous, and confident and now he relies on us for everything. What a difference a few months can make. I am trying really hard to find the balance between comforting and babying and I've found that it's a difficult thing to do. In the hospital it is comforting to me to snuggle with him, play with him, watch movies, and give treats to him. At home, I want/have to try to get things back to normal. I can't give him all of my attention without neglecting Ethan and Aubrey and sometimes it's loud in our house with all of the kids crying at once. They are all so young and most of the time only Mommy or Daddy will do.
The new normal is there is no normal. I keep telling myself that. The boy who only wanted to eat Hershey Kisses every day no longer likes Hershey Kisses. The boy who used to climb and then jump off of everything doesn't even want to walk down the hallway without holding our hands. The boy who is smarter than most 3 year olds now whines or talks in "baby talk" a lot of the time. What can I do to get my Jakers back?
I apologize for writing such a disjointed post, but my mind has been jumping all over the place tonight. Another year come and gone and I have a feeling that this will be the longest and shortest year of our lives. We are looking forward to meeting with Jake's surgeon next week to discuss plans for surgery. He'll be getting new scans done soon to check on his progress and to help determine what type of surgery he'll be facing. For now, here's to a happy, yet tumultuous, new year!
The next day, Aubrey started throwing up and it proved to be a stomach virus when I started on the same path that Saturday. Unfortunately, Jake, Ethan, Randy, my Mom, and Randy's Mom all followed. Poor Jake had hardly eaten a thing for 10 days straight and it showed. He lost a lot of weight in that short amount of time. He started to feel like eating again on Tuesday and has been doing a good job since. He was admitted for his 5 day chemotherapy treatment (#4) on Thursday (1/3/13) and his weight loss triggered a nutritionist to come check on him. Even though he had been doing better, she changed his diet plan to a high calorie diet, 5 meals a day with snacks in between. I am basically giving him food every 30 minutes all day long...my new full-time job, at least for the next couple days. So far this chemo treatment has been a breeze, and I'm happy to report that accessing his port was actually a tiny bit easier this time.
Randy and I have both been struggling a bit with Jake's appearance. We are so saddened to see him looking so weak and frail. I watched a video of him from his birthday this past June and he looks completely different now. He was such a little boy with a round face and chubby cheeks. He used to be so independent, adventurous, and confident and now he relies on us for everything. What a difference a few months can make. I am trying really hard to find the balance between comforting and babying and I've found that it's a difficult thing to do. In the hospital it is comforting to me to snuggle with him, play with him, watch movies, and give treats to him. At home, I want/have to try to get things back to normal. I can't give him all of my attention without neglecting Ethan and Aubrey and sometimes it's loud in our house with all of the kids crying at once. They are all so young and most of the time only Mommy or Daddy will do.
The new normal is there is no normal. I keep telling myself that. The boy who only wanted to eat Hershey Kisses every day no longer likes Hershey Kisses. The boy who used to climb and then jump off of everything doesn't even want to walk down the hallway without holding our hands. The boy who is smarter than most 3 year olds now whines or talks in "baby talk" a lot of the time. What can I do to get my Jakers back?
I apologize for writing such a disjointed post, but my mind has been jumping all over the place tonight. Another year come and gone and I have a feeling that this will be the longest and shortest year of our lives. We are looking forward to meeting with Jake's surgeon next week to discuss plans for surgery. He'll be getting new scans done soon to check on his progress and to help determine what type of surgery he'll be facing. For now, here's to a happy, yet tumultuous, new year!
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