Support Ashley's Battle Against Cancer

Ashley’s journey started when she developed a bump on her tongue. The doctor said he needed a biopsy. Then the news came that it was cancer. Can you imagine all the racing thoughts that goes through your mind? I’m only 34 years old. I have not had a chance to get married. I have not had a baby. I have not bought a house. I have not started my professional career yet. I’m still going to college! Angry one minute, in denial the next and my emotions were all over the place. I could have been a character in the Inside Out movie! The doctor seemed so optimistic and said we can do surgery to remove as much of the cancer as possible and follow up with radiation treatment and then a PET scan in 3 months. The first thing we will do is the surgical piece. We will make an incision behind the ear on the left side of the neck and cut along the midline of the throat around to the other side of the throat. We will remove the lymph nodes on the left side to try to deter the spread of the cancer. We will remove 40 to 60 percent of your tongue until we feel we have good margins. The procedure is called glosslymphectomy with radical neck dissection

The next week while I get all the pre-ops done my mind continues to wonder and race. I still have to tell my mom, my dad, my family. I know they’re going to be just as scared as I am! I finally just came out and said I have cancer. I could see their eyes widen and their faces drop. Silence took over for a good 3-5 minutes before my mom said it’s still going to be alright. Then my dad, mom and sister said we are going to fight! We got this! I finally felt like they heard what I said and they weren’t going to settle and let the cancer consume me. We were going to band together & follow the doctors recommendations and fight this disease head on.

Surgery day is here! Uncertain of my fate. I arrived at the hospital at 4am for a scheduled surgery at 6am. My mom, dad and fiancé all went to the hospital for my surgery. They would only let 1 person in the back while I lied there watching the clock and waiting for my turn. I signed so many consent forms you would think I was buying a car! Then my name is called. I said my goodbyes to my mom and was rolled down the hall and into the operating room. I woke up, very groggy, jp drains hanging from my neck, a nasogastric tube in my nose I could not swallow and I was in so much pain. I looked liked a stitched up baby doll. The cut was all along my neck like someone slit my throat open. I had to suction my mouth frequently just not to choke on my own drainage. It was difficult to imagine my recovery. I guess each day got a little better in the hospital and 21 days later of my mom and fiancé taking turns staying with me the entire stay. While in the hospital my fiancé was trying to get things set up at home for my recovery process. My mom and dad would soon have to leave to go back home to Maryland. Since I lived in WV at that time I wanted to ensure everything was ready at home. I thought I had all my bases covered boy was I wrong! I could not get in and out of bed easily. Especially since I was unable to move my head around. Just to turn my neck proved to be way more difficult than I expected. Progress started to slow so the doctor reminded me it’s time to move to the next step.

The next step would be radiation therapy for the next 12 weeks. The mask they mold to you is atrocious. Hold still while the radiation therapy burns your neck. The burns became wounds. Silvadine cream was my new best friend. The next few weeks are tough but I make it through them. Then it’s a waiting game. Not sure if all the interventions are working. My mind continues to wander about all the what ifs! It’s finally time to go back for my scans to see if the cancer is in remission or if it is spreading. Scans happen and about a week later the doctor calls for the follow up appointment. At the follow up appointment the scan lit up again and that ended up being my worst nightmare. The scans highlighted an area of concern near the original cancer site near the back of the tongue and throat area. The doctors said it’s best to schedule a biopsy of the area within the next week or so. The mind begins to race again.

Biopsy day is here! I went under the knife again only to hear the doctor say we will let you know once the results are in. I am preparing myself for bad news once again! Finally the news arrive and bad news it is! What are my options now? How am I going to cope with all these feelings. My family has been so emotionally supportive during my journey. I feel like a burden at times. I am constantly reassured I am no such burden. My family can see I’m not eating and I can barely drink anything and suggest to my cancer doctor a feeding tube. The doctor agrees and suggests a direct admit on the next visit. This will also allow for the medical head & neck cancer team to have input on the best course of therapy moving forward.

The trip to WVU begins with a 6 hour drive. Check in at the hotel and then head to the hospital for the direct admission and to get my feeding tube. I was looking forward to getting the feeding tube placed. God knows I have not been able to eat anything or have my belly feel full. The resident ENT doctor comes in and mentions we are going to do your MRI scans while you are in the hospital. The MRI scan takes place and within 30 minutes after I was returned to my room the resident ENT doctor enters the room and wants to scope me at bedside. He feeds the scope through my nose and down my throat. He takes pictures and then asks my mom who is staying with me to step out of the room. My mind begins to race again. My moms enters my hospital room with the resident ENT doctor to explain the findings. The doctor proceeds to show me pictures of my mouth and throat. The results show my airway is the size of an inner ballpoint pen. The doctor suggested a tracheostomy to ensure I maintain an airway. Within hours I had a tracheostomy. I was so sore. This is not what I was bargaining for! I was expecting a short 2 day stay for a feeding tube not 2 weeks for a tracheostomy! I felt like I had a new set of obstacles to overcome. My mom stayed next to my side the whole time. My needs had drastically changed I needed extensive medical assistance. It became obviously clear I would not be able to live in WV with my fiancé I need way more help with just the basics. I had to rely on others to feed me to help me shower get to the bathroom help me with my basic Activites of daily living. You know, the stuff we all take for granted each day! The decision was made for me to permanently move back in with my mom and dad. They would have to be my voice now, literally!

The case manager at the hospital began putting together the DME orders and tracheostomy supply orders at the hospital. Now, what’s that song and dance… 2 steps forward and 1 step back? My Insurance in WV would not supply my mother’s home in Maryland with the DME, tracheostomy supplies, enteral supplies, etc. I could see my mom just stressing on how all this is going to work, how can we afford all these new necessities not including the nutrition drinks that were not covered no matter if I had insurance or not. Ensure Plus 1 and 1/2 bottles/cartons 4x a day. Meanwhile they come 18 bottles to each case totaling over $42 something a case. My mom assured me we will work things out. We did get the hospital to try to send us home with a portable suction machine and portable air compressor. We took about 6 inner cannulas and a full trach kit just in case of an emergency or if the current trach popped out. My mom was becoming a professional in trach care. The hospital felt comfortable sending us on our journey while trying to get supplies delivered to the WV address. We thought we were starting to at least have a plan to start our journey home for the next chapter to get set up for chemotherapy.

We began the 6 hour journey to my parents house in Maryland. My mom stopping the car to suction me if my secretions started leaking outside my mouth and trach.

I finally arrive at my new old home. Happy to be somewhere familiar and knowing I’m going to be okay. A different kind of okay, but okay! I experienced a couple of falls during the first couple of weeks home. Just me trying to do all the things I did before I was admitted to the hospital. Decondition is real!

The first hospital outpatient visit was for the second fall at home. I was trying to go get something out of my dresser and lost my balance and hit my head into the Sheetrock wall next to the stairs. My mom said because I hit my head and because this was the second fall in a week I should at least go to the ER to get checked out. We were on our way AAMC to see if the trach was still in place and make sure all my marbles were still there. I desaturated a few times so they called respiratory to be safe. The nurses either did not feel comfortable with deep suction or they weren’t allowed to do it. Not really sure! The doctor finally comes in after the chest X-ray and CT scan and said the trach is in place and we feel comfortable discharging back home.

I thought things were getting a little bit better. I was preparing to go out with my mom and sister to a friend’s baby shower when an hour before we were getting ready to go and my sister noticed she was suctioning frank red blood from my trach. So they called the ENT clinic at UWV and they said to take me back to the ER to be checked. Since, BWMC was part of the UMMC we went to their ER. We arrived at the ER, checked in got triaged and waited forever. Finally almost 6 hours later my suction machine battery is running low and my sister asks how much longer as our suction machine is starting to run my slower. Finally, 30 minutes later they call me back. They come in and ordered more CT scans with contrast. Call respiratory to change the inner cannula and lavage the airway. After lots of blood tests, scans and respiratory treatment/visits they mention we are going to admit me. We go through the registration process and think I’m getting admitted and then the nurse talks to a doctor in transition care that can get all the services in Maryland moving a little faster even without having Maryland insurance yet. On our way home again.

Two days later we are at our appointment for transition care. Other than the receptionist being a little rude everything else was good. The doctors were able to get prescriptions ordered from the pharmacy in Maryland instead of having to drive back and forth to WV to pick them up The doctors also put me in touch with an oncologist in Maryland right at the Tate Center which was close to home. They were able to get me into see the oncologist two days later in the same week. We requested all her medical records from UWV so that we all had a clear view of what was happening with my cancer.

Thursday comes and we get to meet the oncologist and talk about getting chemotherapy started. He wants one of his fellows at the downtown location to see me to ensure the best course of chemotherapy treatment for my type of cancer. I have small squamous cell carcinoma of the mouth & back of throat areas. The one thing in our favor is that Maryland Medicaid has emailed my approval.

Next week we meet with the medical oncologist downtown at UMMC. She said she spoke with the other oncologist at BWMC and agree chemotherapy is my only option at this time especially since it has not been a full year since my original surgery. Not to mention I just finished up 12 weeks of radiation in early September.

The first day on the next journey has arrived. My Dad takes me to get labs the day before my first chemotherapy treatment is said to start. He finds out all the ins & outs of what to expect for our first treatment day tomorrow. My mom takes me to my first chemo treatment the next day so what I thought was going to be a two hour infusion turned out to be 7.5 hours long. The had to give me potassium. This medicine requires a slow infusion before they can start the chemo meds. I’m tired by the time I’m ready to go back home. We did not pack my ensure because I wasn’t expecting to be there that long. Food for thought for the next chemotherapy appointment. After we were finished she took me home and finished her work which she did the whole day at chemotherapy. Lucky for me she can still work remotely a couple days each week!

Over the next three weeks my mom, my dad and my sister all take turns taking care of me and trying to get me up a little each day to keep me strong. Sometimes I feel frustrated because my voice and thoughts now have to communicated by written format or picture chart. Everyone tries to read my lips so I don’t have to write everything down but I can see the frustration in their eyes as well. We manage!

My second round of chemo comes up and my dad takes me and my mom meets me there. Tag team effort so both can still work at their buildings at least the majority of the week. I know both of their bosses are giving them crap about not being in their respective buildings taking on the issues head on. Both my mom and dad are managers and they tell me all the time… when the cat’s away the mice will play!

My mom makes the appointment for my first set of scans a little over a week after my 2nd course of chemotherapy to see if there is any change in my cancer. We arrive at the radiology place for our scan early because my mom has to put barium in my Gtube before I can get my scans. She is getting to be a pro at this since the last time we had the scans done at the beginning for a baseline. The scans are complete and we are awaiting the results. My mind goes racing again with all the thoughts and emotions. Has chemotherapy made a difference?

The day arrives before my third chemotherapy treatment. We meet with the doctor at the Tate Center again. He asks to see all of us for a family meeting. He discusses that the chemotherapy has not been working and that the cancer is spreading in the jaw area as well as in front of throat nearing the left side of the trach area. He wants to know what I want to do. He can make me comfortable or he can try another but different 3 chemical chemotherapy treatment explaining this would be a more rigorous treatment and more traditional in the sense that it could harm the good cells along with the bad cells. I told him I want to fight I’m not giving up! My family said they would support me either way. The doctor agreed to the new chemotherapy regimen and since he was going to need another pre authorization from the insurance company we extended the first chemo treatment regimen by another week to get everything in line.

A week goes by and my sister takes me for my labs on Tuesday and the next day my mom takes me for my new chemotherapy regimen. When I get there there seems like there is always something else they have to give me whether it’s sodium, phosphorus. This time it was zymeta because my calcium is too high. The doctor asks how I’m feeling and if I’ve been having any signs of the high calcium. So far, none that I’m aware of.

My mom and dad put all their savings on one of my bucket list items. We were going to the beach on Saturday, 6/15. My dad ordered me one of those beach buggies that can act as a motorized all terrain wheelchair in the sand. My mom made sure we were staying in a condominium that was handicapped accessible and an elevator to ensure I could enjoy one of the last items on my wish list just in case. I also had parasailing and skydiving but who’s kidding these items could not happen because you can’t land in water with a trach and you can’t land on the ground with that kind of force not to mention air getting forced against the trach when you jump out of a plane. I also wanted to go to Dollywood but could not stand the drive for 8 hours or more in the car at one time. My headaches would get the best of me.

Well fate stepped in again and the day after the new chemotherapy regimen I started bleeding. It was not only out of my mouth or trach it was coming out everywhere including my nose. My dad screamed for my sister and my sister climbed up on the side of my bed to keep me upright while we called 911 on speaker and my dad was trying to put towels around me to hold and put pressure on the areas of the bleed. My sisters fiancé called my mom at work to tell her to come home now! All I could hear was my sister telling me to stay with us and my dad yelling into the phone 911 is still too far away she is bleeding out all over the place.

My dad and sister said they got me in the ambulance and believe they were able to get some of the blood to start to clot. They got emergency clearance to take me to Shock Trauma in Baltimore. My dad said my mom made it home within 15 minutes of the ambulance leaving to take me to the hospital. I can remember briefly trying to tell the ambulance people something before we left for the hospital. I was talking with my finger and ambulance person asked my dad what I was saying. He did not know either but made him feel a little better about everything since I was still somewhat with it in the ambulance.

My mom, dad and sister all make it up to shock trauma just to find out I’m in surgery. They said they had no idea what they were doing surgery on but believed since we called for the ambulance to save my life it was implied consent for surgery. What ever needed to be done to save my life! They finally said 2 people could go up and see me so my dad and mom came up first. I was in the trauma resuscitation unit at Shock Trauma. My dad said they just replaced my trach because the doctors thought that may have been the source of the bleed. They had me on propofol to sedate me to avoid any issues after the surgical procedure and trauma from

losing all that blood. They were also transfusing 4 units of blood. My dad and mom said they watched me and were grateful that I survived the incident so far. My dad and mom came back down so my dad and sister could go back up to see me before they left the hospital for the night.

Most of this part of the story is what they tell me happened as well as what I remember. The next day I was transferred inside of shock trauma to another area known as the surgical intensive care unit or SICU. That day went well my family came to see me. I was alert and speaking. I could see a sigh of relief in their eyes. They asked me again what do I want to do just in case. Do you still want to fight? I responded yes, I still want to fight! Okay, so fight it is! At this point with the trach replaced we still wanted to know where all that blood came from. The doctors did not share what CT scans showed. They wanted to meet with the family the next day to go over the results. Never answering the question of where all that blood was coming from. The next day was going to tell the tale of the horrific origin of where all this blood was coming from over a day and a half ago. I started bleeding the next morning all over again.

I ended up being rushed into surgery again to control the bleed.

My dad, mom and sister said they received a call from the floor where I was staying that I was bleeding out again. My dad said save her life she still wants to fight! My dad and sister were upstairs when they were speaking to the hospital and were telling the hospital to save my life. They brought the phone down to my mom who was resting. They said the person from the hospital kept saying you really want to try to save her life knowing that she has terminal cancer and that if we try the procedure to embolism of the carotid artery she will have a massive stroke. They said they repeated to the hospital do what you have to do to save her life. The lady was snotty on the phone and said someone will call you for verbal authorization for the surgery. They hung up and got dressed in a hurry to start their journey back up to the hospital. They also spoke to the IR doctor performing the surgery and gave approval even if it was going to leave me disabled.

My folks said they arrived at the hospital room to see they were still cleaning up the room from all the blood. They asked if was in surgery and they replied yes she just left about 15 minutes ago and we could wait outside in the family waiting area.

My family said, time was going by so slowly. They notified the immediate family and asked for everyone to reach out to the other family members. Finally dad took a call from the IR doctor that performed the procedure. Everything went as well as could have! We have cooled off the carotid artery and it appears the brain still has good profusion from the other arteries and vessels going to and from the brain. We will have to wait and see once Ashley wakes up to see if she has any deficits from the procedure today.

I arrived back in the same room with my mouth packed with gauze and heavily sedated for the next 48 hours to try to stabilize the area of surgical intervention. My mom slept at the hospital while everyone else just came and went.

48 hours have past and now they slowly allow for me to wake up a little at a time. They remove the packing and everything seems to be holding. They start completing the nuero checks on me to see if i have any deficits on the right side of my body. So far minimal weakness on the right side limbs. Everything seems to be going well. On the fourth day the start a little bit of food in my Gtube to see I can tolerate it. I continue to get better each day I stayed. Finally a week and a day later they were beginning to plan my discharge to home. P.T. came and worked with me for 2 days and on last morning they tried a couple of stairs. Although a little wobbly I was discharged home.

Once home, my parents starting calling the cancer center to get my chemotherapy restarted so I did not miss any of my treatments. I went for my next treatment although weak everything went well.

Trouble strikes again! The day after the recent chemotherapy treatment my dad and sister were helping to the bathroom in the evening and said I just blanked out and collapsed toward the floor. They said they called my name several times without a response. So, they felt the need to call 911 again. I started to regain conciseness and was coming back around. The dad and my sister was able to get me safely back in my bed. My sister said she called 911 back and said they didn’t need to come but the dispatcher said they are already on the way let them go ahead and assess her. Dad called mom to let her know 911 was coming again. I have barely been home a whole week and here we are with 911 stating we are going to take her back to UMMC. They believe I still should be seen by a hospital that could attend to my advanced needs. Just in case anything major like another major bleeding event.

I arrive at the ED at UMMC a little different from Shock Trauma. My parents and sister arrive within the hour but are kept in the waiting area until they stabilize me. The nurses are very attentive. I’m having some bleeding from my trach. Respiratory is called and the doctor inflates the cuff in my trach to avoid me bleeding into my lungs. They put me on O2 to make it easier for me to breathe. They deep suction to get the mucus and clots out of my airway. The change the inner cannula at least 3 times during the next 12 hours. They already know they’re admitting me to the hospital. My dad and sister load up my mom on snacks and sodas from the vending machines before the leave us while we wait and see what other issues happen under observation. During the next 22 1/2 hours we had periods of bleeding, desatting often into the 70’s even on O2. They tried to start a blood transfusion but I started to have a rare reaction and had to stop the transfusion. They suggested moving me to the Medical Intermediate Care Unit for further observation and medical management.

Since being admitted back on June 28th I have spiked fevers, fought a UTI, fought through low h&h, blood transfusions, high calcium levels and pulling my trach out or partially out from time to time and more recent lately. The chest X-ray shows some infiltrates. The hospital wants another family meeting to discuss what further options if any are available to me. All I know so far, the hospital does not believe my family can provide the necessary care that I need at home. TXA to control the bleed comes from a speciality pharmacy and the pharmacy said they could not get for us on an outpatient basis. I also need 24 hour care and assistance to be at home and realize my dad, sister and mother can’t be sitting next to me every hour of the day. I know cancer is beginning to win the battle but I’m still strong! I still want to fight! I can walk a few feet with assistance on my good days! I can help assist anyone who provides ADL care to me.

My hope is that this go fund me page will help my parents to afford someone to come in my home to be with me to assist in my care so I can be part of the family and not just a shift for each of the family to take care of me. Believe me I love my family and my family does everything they can do to ensure I’m taking care of but if each one of the 3 caregivers (mom, dad and my sister) take an 8 hour shift then sleep eat an alternate days at work then we are not spending time as a family

My wish is for me to be part of family while I still have the time on earth to do so. Also, my wish is to further raise enough funds to provide the family with the means to be able to bury me next to my grandparents.