Our Journey with Rhabdomyosarcoma
Updated: Jan 27, 2020
Hi, I am Aimee, Cam's mom. This is the story of how we arrived at where we are today, Sept 2019. The beginning of this blog is written in retrospect, I will eventually get to current real time! I wished I would have followed the suggestions of those around me who said to journal everyday.......
If you are a busy mom like me, summers are never long enough. I look forward to those glorious 2 months of less structure and more family time. My crazy clan consists of a family of six humans, two dogs, one cat, four rabbits and a hamster! Our four kids Maddie 18, Camryn 15, Kate 13, and Treyton 9 are all 3 sport athletes and my husband Brett teaches and coaches at our local HS. Our schedule can be hectic to say the least! Even though sports continue to sprinkle on throughout summer, the break from early to school mornings, homework and the drop off pick up madness is on hold for a few months and I enjoy that time of the year like no other.
August 2018 was a little different from the last 28 years of my life, for the first time ever, my husband had taken on the responsibility of head varsity football coach. It was definitely not something we had expected him to do at this point in his career. Actually, he had been coaching at a neighboring school district (Huron HS) for about 6 years when one of his friends came calling. To give you a little history....Brett started his coaching career in fall of 1990 at Piqua HS in the Dayton area where he mentored under Steve Magato and current long time coach Bill Nees. Three children later and living 2.5 hours from family brought us back to northern Ohio to Vermilion. Brett had graduated from Monroeville HS and I had graduated from New London HS, so Vermilion was a great place to allow our kids to grow up close to our families who are still here in the area. Maddie was in Kindergarten when we moved to Vermilion. Brett coached football as an assistant in Vermilion for about 5 or 6 years before going to coach with the staff at Huron. Brett was completely happy at Huron and our kids had many friends in both our home district and there, so it was a win/win.
Since we had come to Vermilion, football coaching changes were frequent and the program struggled to grow and compete. Then something changed, in the winter of 2017 our friend Matt Kobal was hired as the new head coach at Vermilion. Matt and Brett were friends from the early years at Vermilion. Matt convinced Brett to come back to help him turn football around at VHS. It was a fantastic year! Our two oldest girls were both playing varsity volleyball so Brett could watch them play more since he was coaching at the same school. The community was so excited to have Matt as the new coach, he was born and raised here, played here and in college at Mt. Union. The local kid come home to turn the ship around so to speak. The 2017 season was the most fun our VHS kids had known. They were more successful than ever and were excited for the next season to begin, it was fun to be a part of that.
Everything changed on Friday November 17th, 2017.
It was just three weeks after the last game of the season. Brett had been at basketball practice getting ready for the boys season to start. I was home with the kids. Brett got a call telling him Matt had been taken to one of our local hospitals. Brett and our head
basketball coach jumped in the car and headed to the hospital ER. Matt had been on his way to a HS football playoff game with some fellow coaches, they stopped for dinner before the game. Matt appeared to make a choking sound while eating, slumped forward towards the table. Patrons in the restaurant jumped to assist, he had gone into cardiac arrest....when my husband got to the ER, they were escorted to the room where the medical staff continued to try and revive him. He never regained consciousness. Our community mourned, our school morned, our family and friends morned. It was not just the loss of a great friend, but for those in our sports community, it was an immense loss for our football program. Our football family did not want to see all the hard work of 2017 get turned upside down by hiring an all new staff for 2018. So, my husband ended up taking over where Matt left off to keep everything as normal as possible for the kids who had come so far during the 2017 season. All the building blocks that were put into place were set to continue into 2018. That was exactly the plan and our town had more excitement than ever for 2018, to honor Matt, to continue where they left off, to turn the corner and keep building this program.
We had the hardest working senior class coming in and they had goals! We couldn't wait to get the party started so to speak!!
On August 24th the 2018 Sailors took the field for the first time and didn't disappoint. They traveled to Oberlin and won by a score of 55-13! Then we had our first home game and won again 55-13 vs. Brookside. Now one of the biggest weeks in the season, our grudge match against backyard rival Firelands! This was the year we really felt we could walk away with the bragging rights!!
September 7th 2018
We couldn't wait for game time!! We were hosting on our own field, it was a great game last year even though we lost. But, this year we just knew it could be different. We typically could complete in all other sports, but football was the one for all the marbles. We were set to receive on the opening kick off. This is where the fun was supposed to start. The kids are crazy in the stands, I am doing my duty as lead senior parent selling our fundraiser items for Prom to Dawn in the far end zone area by the concession stand. So many people are standing around the fence, I can't even see the field to tell what is going on. So, like 5 minutes into the game someone tells me our quarterback was hurt on the second play of the first possession. What? The commander of the team, our perfect meant to be our year, play maker is hurt? Um, what exactly happened....it was bad. Our #5, Seth Hurd, ran out of bounds on a quarterback keeper and was tackled as he hit the sideline. It appeared that his cleat caught in a drain grate in the sideline area and it twisted his leg underneath him and the defender. Broke, Snapped, Season ending, it hurt BAD! We felt like someone else died in our program. Damn, this was supposed to be our dream team! Why did one player change the tide of the season in one play you say? Well, our next fill in's for QB were both good receivers, so we not only lost our QB brains, we lose another threat when we move a new guy into the QB position. The whole thing was a punch in the gut. I remember thinking at halftime, we have to win this to keep our heads together, these guys have to prove that they can do it even without Seth. We lost 21-19, so close, but not enough. It is sometime in this week that Cam tells Maddie she has this sore spot on the inside of her left leg, right at the crease where your swimsuit bottom rubs. Maddie look at it but there wasn't a mark or anything.
Why am I telling you these football stories? Because, I want you to feel where are hearts are as these days progress.....
Week of Sept 9th
Football is scrambling to figure out a new plan. It is sometime in this week that Cam tells me about this sore spot on the inside of her leg. I say like most mom's "oh it is probably an infected hair or something. Keep an eye on it, if it gets worse or is still bothering you in a few days let me know." This is one of the big weeks for volleyball, we have Firelands, Willard, Huron, and Elyria Catholic. Cam and Maddie are having great games, it was an exciting week of volleyball. Beating Firelands in three sets felt great to the girls! Cam has been working with the athletic trainer at thee HS, she has several muscle strains from so many volleyball matches with little rest in between. They have had 10 games in 20 days. Football had a tough loss against Perkins this week, not enough horses. Saturday was crazy busy, for our prom to dawn group we were up at 5am holding a coffee and donut sale at the VHS cross country invite that has hundreds that attend every year, so that kept me on my toes getting everything organized this past week too.
Sept 7th game vs. Margaretta, Cam had 12 kills and 19 digs!
Week of Sept 16th
Cam and Maddie have been grinding hard at volleyball, the games start to level out to two per week. On Tuesday the 18th Cam asks me to make her doctor appointment today, I told her I thought we should try a massage first, we were afraid the doctor would just give her a muscle relaxer and tell her she couldn't play volleyball for a week or two. They play Perkins tonight, they have an amazing game. Camryn has 31 digs, I think this would have tied the school record, then her teammate Angie ends the night with 33 to best her performance! Cam and Maddie also double up for 10 kills a piece for the night. Cam is really starting to have issues sitting, we think this sore spot feels like it has turned into a tight tense muscle. She has been working with the school trainer daily. Unfortunately, I can't get her into the Massage therapist until Saturday, but that works there isn't a game that day. On Wednesday she tells me she is starting to feel stretching around her but from her hips when she walks. We decide with her trainer that maybe she should sit out on Thursdays game since that would give her a weeks rest from Tuesday's Perkins game until Edison next Tuesday. Maybe some rest and the massage will do her some good. She is really having a hard time sitting at school on the hard chairs, she tells me she has been sitting with her leg under her, sitting on her hands, or kneeling at her desk because it hurts so bad. Something has to give, I am running out of ideas to help her. By the end of the week she is not feeling that great, struggling with the pain. We head to Tiffin Friday night for the football game. It is a heartbreaker, the loss is devastating 43-0. Our boys are just mentally beat down, it is hard to put into words the hurt these kids are going through, it just wasn't what we thought the year was going to be. On the way to her massage appointment Saturday, Cam tells me she hasn't gone to the the bathroom in a few days (a BM), she's not sure if she is uncomfortable about going because sitting has been so hard or if she can't go because of constipation. The bump has increased in size, it is hard to describe. You can feel it through her skin it feels like a twisted rope. It goes up her backside predominatly on the left towards her tailbone. We get to the appointment and I go into the room with her. We discuss some of the issues and pain Cam has. The therapist is an older lady, like 70ish, but she really knows her stuff. My friend Jami gave me her contact info, Jami knows all the crazy alternative medicine people ha ha! She is totally into all the medicinal purpose of massage. She looks at Cam's posture and balance and points out several things that are not even she notes that Cam tends to turn her toe to then inside when she walks which is something I haven't thought of in years, since she was a toddler. She explains everything she is doing and when she applies pressure to different points what other areas of the body should feel tension release and relaxation. It was pretty cool, in fact there were several times when Cam totally fell asleep. It was all interesting and I guess kinda weird at the same time. Cam kept looking at me in the beginning like what the hell is going on, like she thought the whole thing was a little goofy and rediculous, not gonna work. However, shortly as she kept telling Cam to relax and just let her body melt over and over, it was like you could just see the tension going away. She worked on Cam for a good hour. Funny thing was, when we got in the car to go home, Cam said to me "get me home as fast as you can, I have got to use the bathroom!!!" So, maybe this was going to help? They say you feel continued results from massage several days after, so we just kept hoping for better days. Next weekend is the homecoming dance, so we have got to get this kid feeling better so she can finally get some relief and have some fun. Saturday
nights Cam, her boyfriend who is a senior football player(of just a couple of weeks) go to one of the other football player's houses for the regularly scheduled OSU game night. There is usually quite a few in their friend group that go and Cam just loves it. Sunday is the Wooleybear Festival in our town. Prom to dawn has a major fundraiser managing parking for the event. I have been wrapping up loose ends and making sure our worker shifts will be covered for the day. I have been at school every morning this week collecting pop and water from our seniors that will be sold during the parade and Saturday I am sitting outside the HS for additional drop offs from parents. The festival has great weather.
Sunday Cam goes to Mill Hollow, a Metro Park a few miles from our house with one of her best friends Reese and her dog Stella and our dog Bailey.
Week of Sept 24th
It's homecoming week, always crazy busy. With both Maddie and Camryn going to the dance this weekend, there is always running around to do for last minute things! Saturday morning we have the Vermilion cross country invite where prom to dawn has a big fundraiser planned. That will keep me extra busy too. Tuesday night the girls play Edison, another big game for the Colahan girls, Maddie breaks the school record for single game solo blocks with 8 and Maddie also contributed 13 service points, 4 aces, and 10 kills along with her solo block points Camryn has 11 kills to close the game! Wednesday night is the homecoming parade. The kids have so much fun. Typically the pre homecoming festivities have been on the Thursday before the game and almost all the teams are playing a game on Thursdays. Wednesday so many kids showed up and they took to the streets of Valleyview with the band and had their little parade and came back to the school for the bon fire and pep rally. Cam tells me that she is starting to be in a lot of pain again. She isn't confident that doing more massage is going to help. Thursday night the girls had one of the long road trips to Oak Harbor for a tough conference battle. Even though the girls kept it close in the 2nd and 3rd sets, OH swept them in 3 sets, not the best game of the season for sure. Friday is our 4th home game all ready for the football season, it is the boys turn to take on OH, they battle it out, but to no avail, it is another difficult end to the week for the boys, a 38-0 loss. Saturday is a super early day. I am up at 4 am to get things set for the cross country meet. Time to sell the donuts. I get home mid afternoon and the girls are in full swing getting ready for the big homecoming dance. We go to one of the area metro parks to take pictures of both Cam and Maddie with their friends, then they both head off to different dinners. The girls are beautiful, we are super proud parents to have such good kids. I mean at the end of the day that is all that matters.
Week of Oct 1st, 2018
This is another big volleyball week, three games including senior night for our Maddie. Monday starts off with a win over Clyde. Cam and I talk and she says she absolutely needs to go to the doctor, she can't take it anymore, especially at school, she is miserable. I call Tuesday morning Oct 2nd. She can get in to see one of the pediatricians in the practice at 10:15, she is so relieved. I have been talking to my sister, Adrianne, frequently the last few weeks. She and her husband Derek are pathologist assistants in the Boston area. She says what I am describing could be a pilonidal cyst or something similar. Cam says she is actually "excited" to go to the doctor. I think we can probably just get something for pain management and go from there.
I pick her up and we head to the clinic about 15 minutes from school. We go and the doctor says she really isn't sure exactly what we are dealing with, that it could be a type of cyst. She wants us to go to the downtown Cleveland Clinic for an ultrasound. They can get us in today, so we leave and head straight there. That should help give a better idea of what's causing all the pain. She will call us tomorrow and let us know what is going on. We hurry up and get back, tonight is senior night and I have to hurry up get home, change my clothes and get up to the school for the pregame senior walk. I make it with only about 15 minutes to spare!! The girls win again it was a grudge match against Margaretta who beat them the beginning of the season, Maddie has 13 kills!! The doctor calls in the morning and says she is calling in an antibiotic for infection and is going to have us follow up with a pediatric surgeon specialist at the Avon office next Monday they will see if the medicine is helping and go from there. The Ultra Sound comes back with this result: "There is asymmetric enlargement, edema, and hyperemia of the right perianal soft tissues. There is no fluid collection, abscess, or underlying mass." Okay, even though this doesn't tell us what exactly is going on, it say "no underlying mass" so that makes me feel much better!! Cam is finally taking a piece of foam to school to sit on, it helps a little, but not much. Thursday night we travel to Willard for volleyball. It was another great game, Cam with 17 kills, Maddie with 4 solo and 4 assist blocks, 4 aces, and 12 kills, it took 5 long sets to win it. Our college friends came up from the Columbus area to see the girls play, I was so glad they had a great night! Friday the boys took on Port Clinton in an away game. I took the girls after their practice was over. It was a long chilly game and another difficult end to the week, a 47-10 loss. there was hardly anybody at the game for the Sailors, hard to deal with for this coaches wife. Things are pretty tense at home between Brett keeping things together for the boys and us trying to keep ourselves on track with our own kids. Football is becoming a very long 10 weeks this year.....
Sunday is Trey's 9th birthday. He is so excited, we are having a football party of course!! We added a little surprise for him, most all of the senior football boys came to his party. He was in his glory. They came for the presents,cake and ice cream then hung out and watched the Brown's game. Then they took Trey outside and they had a fun time playing a little touch football with him and a few of Trey's buddies. It was a great day.
Week of October 8th 2018
Monday Cam and I go to her appointment at 1:00 in Avon. We meet Dr Deross a pediatric surgeon. He tells us he doesn't believe the mysterious painful bump is a cyst most commonly found in the outer layers of skin because it is not responding to the antibiotic. They can also tell it doesn't seem to be fluid filled from the ultrasound. He is not ruling out some internal type infection so he changes Cam's prescription and puts her on something stronger and wants to have her scheduled for an MRI back at Main Campus. We have to stop at the lab and have some blood work done before we head home. We wait to find out the schedule for the MRI. It's now Tuesday and we have a home game against Huron, some of Cam's best friends and club teammates play for Huron so we always look forward to these games. The girls and their families are forever friends to us. Not to mention both Maddie and Cam played on JO teams with Huron coaches, it's kinda like home away from home and if our girls could go to two high schools, this would be their other home. When we play them it is for "the belt" which is a customized boxing type heavyweight belt looking thing decorated to represent both teams. Needless to say, Huron has been very solid for many years and we have yet to win the coveted belt! The game was also our benefit game that we raise money for a cause. This year it was for the Crones and Colitis Foundation.
Leading scorers included a record breaking Maddie with 3 assist blocks which brings her total blocks for the season to 84 which is a record last set in 2009. She also had 6 kills on the night. Mary Carosella led in kills with 9 followed by Cam Colahan with 6. The team lost, but the Colahan girls finished the night with fantastic individual performances. Thursday night we traveled to Lake Ridge Academy, the girls won in three sets. Camryn still isn't feeling any difference in the bump, in fact the antibiotic does not seem to be making any difference. Now she even thinks it is starting to happen on the right side too. I feel like I can see a difference in how she walks and she is definitely starting to lose a little quickness on the volleyball court. People keep asking her how she has been able to play this season, she said she doesn't hurt when she is playing because when she is standing up it there is no weight on the bump. Her labs came back normal, they have her scheduled for the MRI next Wednesday on October 17th. She says she doesn't care anymore, she just wants what ever it is removed and get it out soon, it is driving her crazy. The boys play Huron in Football Friday night. It rains the ENTIRE game, the weather was as bad as the game. We lost 31-7. Saturday the girls have their last regular season volleyball game at home against Norwalk. We lose in 4 sets, Cam doesn't have her usual quickness and power for sure, I am starting to worry. They got a bye in the first tournament game, but will end up playing Norwalk again next Thursday for the sectional.
I haven't really mentioned this throughout the blog this far, but for every time Maddie and Cam were playing a game, their little sister, Kate, was typically playing the same day at the opposite venue. So, I have been going to Kate's games then running to the varsity game some place else. Well, Kate and her team had their SBC tournament today too and Cam went with me to watch her team win it ALL! It was so much fun and so glad Cam could be there too!
Week of Oct 15th 2018
It's Monday, nervously starting the week. So much going on. Maddie is nominated for the Powerhouse athlete of the week today, that is pretty exciting! Cam is just trying to make it through the school day. The hard knots on her seat are making it nearly impossible to sit on the hard chairs at school. She takes her cushion, I am heart broken when she says she sits on her hands, folds her leg under her, anything to relieve the pressure and pain. Kate has a couple weeks off from sports now that volleyball is over for the middle school so that lightens our evening schedule for this week.
Wednesday October 17th
Brett and I are up early with Cam to get her to downtown Cleveland for the MRI appointment. The bad thing about the early appointments is there is no avoiding the rush hour traffic of the city. The hospital is about 80 city blocks once you get off of the highway, so it can be a slow go. Once we get to the hospital we meet up with Courtney, the childlife specialist who explains a little bit about what will happen for the day. In my mind I am still trying to grasp what is going on. All her labs have come back normal, that is good right? If somehow this bump is cancerous it would surely effect her blood tests. I have combed through them and can't find anything that would indicate anything serious, but I just know Cam needs some relief. They take Cam back for the MRI, Brett and I just try to pass the time. Once Cam is done, we can leave as there is nothing we will know immediately. We go home and wait for the next call. Cam goes to volleyball practice with Maddie.
Thursday October 18th
I am home working on Prom to Dawn things. We are going to sell "Football Mums" for Senior night next week. I am getting all the ordering set and trying to get some marketing put together for social media. We have to be at Willard earlier tonight for the the girls game, they play the first game. Brett is going to go over straight from football. I am going to go with Kate and Trey with our neighbor Mark. Mark and his wife Vivian are like another set of grandparents to our kids. Mark had a serious stroke a few years ago that forced him into retirement from his engineering job at Ford Motor Co that he truly loved. When he is feeling good they love to come watch the girls play.
My phone rings after lunch time. It is Dr. Deross. He tells me he is very concerned by what he sees in the MRI. He asks if we can bring Cam to the Clinic main Campus after school to be admitted. He wants her to have a CT Scan and a biopsy. My heart and mind are racing, it is a big game tonight, if Cam is not there she will be beside herself. Brett and I can't miss it either, it could be Maddie's last high school volleyball game if they loose. Cam and Maddie will want to play together, this is just not working even considering the circumstances. I explain my dilemma to Dr. Deross and ask if she can please just come down in the morning as the game is an hour away in the opposite direction from the hospital. I also tell him that as crazy as it sounds she is still playing volleyball! He is persistent that she needs to be admitted today because if she comes in the morning she will basically be on "stand by" for the scan and biopsy but if she is admitted she can be slotted in the schedule and he doesn't want to wait until next week. So after some debate, it is decided that we will proceed with going to the game as normal, but we will drive Cam home and gather her things, then take her to be admitted. He said he didn't care how late it was when we got there, she just needed to show up. I call Brett and explain the situation. We decide not to tell the girls what is going on. No need to stress them out or give them information that they would share with their team before their tournament game. What a mess, the girls come home after school and get their game gear and get ready to head back to catch the bus.
I wait for Trey to get off the bus at 3:45 so I can get him ready to go. My tension is high! On Thursdays Mark's college friend comes over and they work on his model train set up in Mark and Vivian's basement. I tell Mark we should leave by 430ish, but should have thought about the train day! By the time he is ready and Trey,Kate and I are ready it is close to 5. Mark is wanting to drive us since he recently was able to pass his drivers exam and be out on the road again. With everything going on I probably should have driven, I feel much more anxious when someone else is controlling the moment! It is also a tad bit stressful to witness a stroke survivor drive car while you sit in the passenger seat Ha Ha! We love ya Mark!! We get to Willard High School and of course it is one minute until the game is supposed to start and there are no close parking spots, remember I am with Mark who has to use very concentrated efforts to walk at a very steady pace with his cane. I suggest that he pull up to the curb by the entrance, he could get out and I would go park the car.....
nope, Mark assures me he can walk from the parking lot. I am now in a full out panic sweat! I have to get Mark in there, the game is probably starting, I don't want to not see my girls play this game, not one minute. Deep breaths, this will be fine, we are almost there. You are probably thinking I am crazy, but we have all been there in our fast paced lives, always barely making it to the next stop ha! The kids and I jump out of the car we can't race in because we have to get Mark in there. Kate and I are like to paces in front of Trey and Mark. I hear a commotion, turn around and there is Mark toppled over in the parking lot! All we could do is laugh and get Mark back up on his feet an move forward, he did admit it was one of his more graceful falls! You see, Mark lost muscle function down his whole left side of his body, so we have learned a lot of little things about his rehab. For him to walk he has to completely focus his brain on the act of lifting and planting his foot with every step, he litteraly has to tell his leg to lift, move, step, plant etc. If he tries to talk and walk at the same time or gets distracted....game over. He is an amazing functioning stroke survivor. He told me he felt he had two choices, to lay in a bed and waste away or make rehab his job and live life. Luckily he chose the latter, he does his exercises and dexterity tasks every day.
After all this, we get into the gym and they actually are just getting ready to do the National Anthem! Yay! We haven't missed anything. We get across the gym to our seats and everyone starts asking what the MRI results were and we had to explain what was going to happen in the next 24 hours. The game was bittersweet, Out there playing were our two beautiful oldest daughters giving it their all. Things weren't going well, Cam was probably having the most difficult game, I could see it, especially that night. She couldn't get to the ball with her normal quickness and her jumping ability at the net was diminished. It was turning out to be the last game for our girls season. Maddie would never play high school volleyball again for her team and never again with her sister Cam. Even though I took my camera, I feel like I didn't document it enough. With the loss it was the end of a nine years of team volleyball for Maddie, pretty emotional for first time senior parents like us. Below is some video from the game. Maddie is #33 and Cam is #34. It is amazing to me that Cam is still diving and digging out balls at this point. But those that know her can tell her quickness at the net and the power of her swing is not the same.
After the game we wait for the girls to come out of the locker room, then Brett and I need to explain to the girls what is going on. Brett brings Cam home with him and I come back with the kids and Mark. It is after 8pm by the time we get home, at this point who cares what time we get to Cleveland, we take our time, eat something, and pack an overnight bag. Brett and I decide I will take her to Cleveland and he will stay home with the other kids, get his things set for his substitute at school, then he will meet me in the morning at the hospital. Cam and I make it to the hospital at 11:15pm.
We go to the admitting waiting room, use the desk phone to call for assistance. They tell us that someone will come to get us soon...an hour later after midnight we finally get to the patient room. Cam fell asleep curled up in the waiting room chair. I was thinking all I wanted to do is get to the room and exhale a bit, but that is not how it works in a hospital! We got up to the 3rd floor and nurses were in and out until 2am... EXHAUSTED!!
After we finally get in the room --- room 33 by the way (Cam's favorite jersey #) she finds out you can write all over the walls with dry erase markers and gets busy doodling. She is pretty much her laid back self. I have to admit, that at this point I have some pretty strong emotions going on. I found myself watching my sweet girl being her silly self and I start to wonder would this be the last hours of my girl's life where she had no concept of getting sick, what if they actually tell us she has cancer? Is this pain she has been suffering with cancer? Will this be the last days of "normal life" for all of us? It can't be cancer, she is an amazingly healthy teenager, super active, she hasn't even drank a pop in like 4 years, there is no way this is that serious. I am trying to convince my self every reason it will be something else, but my motherly instincts are starting to get the best of me. I love my children with every part of my being, she is going to be fine, she has to be fine. She is in the best physical shape of her life, she played volleyball tonight for God's sake, these are the thoughts that looped through my head all night as I watched her goof off and make her little video's and do all the normal things 15 year olds do. We both finally took a few hours nap.
Friday October 19th
Around 6am people started coming in the room again. They were going to take her for the CT scan at 7am then do the biopsy at 10. This is her in recovery...
After the biopsy was done. Dr. Deross came and talked to Brett and I in the waiting room. He told us everything went well and how much tissue they took etc. He was talking about the next steps and at one point mentioned an oncology consult. I was listening to him go on talking then I stopped him and said you mentioned an "oncology consult" is that just normal protocol after a biopsy? He then hesitated and looked at Brett and I and said, "I don't normally like to bring things up until I am certain about the diagnosis, but I have to tell you I am very concerned that we are dealing with some sort of cancer." My world is crashing. Brett and I have a few minutes before we can go back and be with Cam. We decide we are not going to tell her until we are 100% sure of what we are dealing with. She gets released and we head home. Brett has a football game at Edison to get too and I have 1000lb. weight pressing on my chest.
The weather is getting crappy, it is cold and damp but Camryn insists on going to the football game that night. At this point I just want to protect her, should she go to the game, what if it makes her get sick, should she stay home and rest? At the same time, we just want to do our normal stuff. I am not sure what the pregame talk was that night in the locker room, but it worked. It was like something came over our kids that was just magical that night. We won in the most exciting game of the season. It was exactly what we all needed.
The Sailor's won 36-35 over the Edison Chargers in the final minutes of the game. Our school community was so worried about Cam and we are a pretty tight group. It just kinda felt like if the boys could put this together against the odds, Cam could too. The rest of the night was a celebration to take all of our minds off of what the next few days would bring. We knew we would not get the pathology results back until the first of the week sometime....thats way to long to think about all the what ifs!
Her body was getting tired over the weekend. I took this picture of her volleyball bag. I wondered if our girl would ever make it back to the court again, wanted to take a picture just how she kept things, just in case, you never know, this can't be happening. Please God what ever this is let us all have the strength to overcome and get Cam healthy again.
I kept busy getting team shirts ready for the annual powder puff football game coming up this week. Sunday and Monday go by with no news....is that good or bad?
Week of October 22nd 2018
Tuesday October 23rd
My phone rings, heart drops, the call is Dr. Deross. In that moment I want to know, don't want to know. I have to answer.....
Dr. Deross apologizes for calling me to discuss the biopsy over the phone, he says he prefers to do these conversations in person, but being that we are not that convieniently close to drive to Cleveland he wanted to keep our trips back and forth manageable. He tells me that the biopsy confirmed his suspicions, he talks about some sort of soft tissue tumor thing, something I can't say or spell, sort of sounds like the lung follicles we learned about in science once some sort of Rhabdo sarcoma something. My head is spinning what does all this mean? He says it is rare and he wants us to see the oncology team ASAP because treatment needs to start right away. I call Brett, we sit in silence on the phone. Cam wants to go watch her besties play volleyball in the tournament tonight. We decide to talk to her when she and I get home from the game and Brett is back from practice.