Natalie Elizabeth Evans

 

Natalie is Jennifer’s 16 year old daughter. Jennifer and Natalie have had a special relationship all of Natalie’s life. The bond between Jennifer and Natalie is rare and so strong. Throughout Natalie’s childhood they were partners in a world that was very difficult and stressful for them both, at times. When Natalie was a young child they would wear matching outfits, and you could tell they both genuinely enjoying being with each other. Their mother daughter bond has always been beautiful. Even through the rocky early teenage years, no matter what the situation was Natalie and Jennifer were always together, protecting each other, and if they would fight, they would quickly resolve it and move on.

When Jennifer was first the diagnosis, back in Aug of 2016, I was so concerned about how Natalie would be able to handle a situation with this level of stress, uncertainty, and fear. I spent a lot of time talking to Natalie about the situation, making sure she understood what was happening. I did not want Natalie to think she was being left out or we did not want her to know what was happening. Natalie did very well processing her emotions, being honest about her feelings, talking about the situation, and keeping a positive attitude. As things improved with Jennifer, things improved with Natalie.

In April, when we got the news the immunotherapy was not working, we were all obviously upset. I was mindful to pay close attention to any changes in Natalie’s mood, attitude, sleep, and eating habits. I knew disappointing news like this could really take a toll on her. Overall, she seemed to be holding up ok.

When Jennifer was admitted into St. Anthony’s after the seizure i knew it would be difficult for Natalie to understand the situation we were facing. Jennifer slept, constant, for the first 3 full days after the seizure. It was hard for Natalie to understand that she was not in a coma, it seemed very “coma-like.” Natalie did her best to stay strong and focus on the positives. There were many late night conversations when I slowly explained more and more the gravity of the situation. Natalie is one of the strongest people I have ever met. Her ability to take in such hard information and pick herself up and continue to look forward is truly inspiring.

Natalie was 100% against a nursing facility, just like I am. Natalie, and the entire family, desperately wanted Jennifer to come home, and we were willing to do whatever we had to to make that happen!

On Thursday the 23rd, I was at the conference in Tampa. This was Jennifer’s first full day home. Before I left, I gave Jen all of her morning medications, and told her the game plan for the day. I woke Natalie up and gave her specific instructions on what to do, what not to do, why she should and should not do certain things. Jessica was home with Jennifer and she had a few visiting family members throughout the day, but Natalie was home with Jennifer the entire day. I was a little worried about how Natalie would be able to handle the shock, sadness, and reality of the situation with her mom. Jennifer is doing better each day but she came home to weak to walk or stand. She was in bed, unable to get out of bed, for 2 weeks, atrophy and the effects from the tumors in her brain have made her entire body weak, but especially the left side of her body.

The way Natalie was able to handle the situation, with such maturity, love, compassion, strength, and determination was greater than I could ever explain. Natalie helped her mom in every possible way. She spent the day making sure Jennifer had everything she needed, down to making sure her pillow was angled properly. Natalie asked all the right questions, doubt checked to make sure she was moving her legs and arms safely, and was ready with her phone next to her to give an update to any family member that called. Natalie even did physical therapy exercises, in the bed with Jennifer. She motivated and directed Jennifer in stretching her arms, bending her legs, lifting her legs, etc. When Jennifer didn’t want to continue because the muscles were sore, Natalie motivated her to push for a few seconds longer. Natalie made sure she understood what was a safe exercise before she started and was always mindful to make sure she did not push her to hard.

The entire day was a wonderful success and I have never been so proud of anyone in my entire life. Natalie took on a challenge that, I would argue, many adults would not be able to do. Not only did she take on this challenge, she was happy to do it. She told me more than once, “my mom has always taken care of me, it’s my turn to take care of her.” Of course, I wanted to blubber like a little baby when she said that, but I held it together pretty good lol

Natalie truly does have a natural ability to take care of people. I think she could become an amazing nurse, nurse practitioner, or doctor one day! When Jennifer first got her diagnosis in August, Natalie started coming up with great ideas making things for cancer patients and donating them to the Florida Cancer Center, where Jennifer gets her treatment. One idea was to make fancy bath bombs, because we have learned with Jennifer, those little moments of pampering, like a relaxing hot bath, make a world of difference. Once Jennifer started to get better, around Sept and Oct, the excitement of Jennifer getting better became the focus. When Jennifer was in the hospital, this most recent time, Natalie told me she felt bad for not following through on the donation idea because Jennifer started getting better, it didn’t seem important anymore. I explained to her that kind of thing happens, you think of ideas when things are bad and when they get better those idea start to seem no longer important. Natalie does have a renewed determination now, and a lesson learned on follow up on what you start.

Natalie’s donation idea has grown a bit since her first idea. She is currently outlining her ideas, and creating a mission statement to start a non-profit. She would like to set up a beauty and pampering events at various Florida Cancer Centers. She wants to help women feel beautiful  during their cancer battle. She wants to do makeup, hair/wig styling, nails/manicures and of course making homemade bath bombs, lotions etc. I think it is a wonderful idea and cancer patients would love it.  Right now, its just an idea, we don’t know if this is something she will actually be able to do on the scale she is dreaming of BUT she is an amazing person with a huge heart, I am sure we will be able to set up something. I think spending time with and building a bond with other cancer patients will be just as therapeutic for Natalie, as it is for the women she meets.

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Discharge

I could not go to the hospital on Wednesday because I had an extremely important conference to go to. At the end of the school year, I was offered a chance to go to the AVID summer institute conference in Tampa. I was ecstatic and jumped at the opportunity. Well, that conference ended up falling on the day Jennifer was discharged. Originally, we thought Jennifer would be discharged on Thursday, which would have been much easier for everyone BUT there was no chance I would complain because EVERYONE has been waiting and praying for Jennifer to come home.

About an hour after the conference started Jennifer text to tell me she was being discharged that day. While trying to focus and not make to much of a scene, I began texting like a wild would, Jessica was off and running to buy the last few supplies we needed from Wal-Mart, hand sanitizer, monster bottle of anti bacterial soap, 2 sets of white bed sheet (so there is always a clean, bleached, and germ free set available for Jennifer’s hospital bed), flushable wipes, etc. Basically all the little supplies no one thinks about until the last moment. Natalie was off and running cleaning and recleaning the house.

Our mission has been to make sure Jennifer was able to come home and not go to a nursing facility. It has become an obsession to keep everything super clean at all times. With three children in the house, its like throwing a bucket of water on a wild fire lol BUT we have done pretty darn good at it. My mom, dad, and Tom were all texting me throughout the day trying to come up with a game plan. Usually discharge is not an issue for a person getting out of the hospital. WELL…… In this case, it was extremely difficult.

Up to the point of discharge Jennifer was complete and totally bedridden. Physical therapy was able to help her sit on the edge of the bed, and work her muscles while laying in bed, but she wasn’t strong enough to walk. Jennifer believed she would be able to get into the wheelchair, with assistance. I was not sure if she could or not.

I left the conference at 5pm and raced home to get a change of clothes and some shoes for Jennifer. After the million text messages sent throughout the family all day, no one thought of clothes lol. I got home, ran around (literally) getting her stuff together. I stopped for a moment in the living room and out loud asked myself, “why the heck am I running.” I knew at that point I was really nervous to get her from the hospital. So, I stood there, took a deep breath, and said I prayer, again out loud. I prayer for the strength, determination, confidence, and clear logical mind I needed for this discharge and going home process. I drove to the hospital hoping Jennifer would be able to stand or walk some, just to make things a little easier and for my own selfish reasons too.

The nurses at St. Anthony’s have been so wonderful. After sitting in Jennifer’s hospital room for 10-14 hours a day, for 2 weeks, I got to know the nurses well! The discharge nurse, Jess, asked if Jennifer was going to a facility. When I explained to her no, and why I did not want her to go. She, in a very kind tone, asked me if I had any experience as a CNA. I told her no, I don’t, but I believe I can do this and I am going to learn, try, and work hard to get her better. I could tell she was genuinely surprised and happy to hear my answer. She told me half the battle is having the right attitude and I already have that. She then started right in telling me all the important tips, advice, tricks, and information I could possibly need.

When it came time to get in the wheelchair the nurse and tech asked Jennifer if she could stand and get into the wheelchair with help. Jennifer said yes. The slowly moved her to the side of the bed, I was standing directly behind the wheelchair, which was directly in front of Jennifer, so we were almost face to face. Jennifer sat up, with assistance, and tried to pick herself up off the bed, with one person assisting on each side. Jennifer, very slowly, tried multiple times, but she did not have the strength to stand, or put any weight on her legs. I felt so bad for Jen because I could see, by the look in her eyes, she was a little surprised by the extremely weakness and a little disappointed. The nurse called for two more people to assist her.

Two large male nurses came into the room to help Jennifer into the wheelchair. They called it a “total move.” With one nurse on each side, and a nurse in front, they were able to pick up all of Jennifer weight and place her in the wheelchair. At that moment, I started doubting myself and questioning if this was something I could really handle. I looked at Tom and I could tell he was thinking the same thing.

She was brought down stairs to the car and all I could do was pray more. I just waited praying and hoping that I was not overestimating my ability to take care of Jennifer myself. When Tom brought the car around, the same two male nurses picked Jennifer up to put her in the car, Tom had to get in the back seat on the other side, to help pull her in. My mind started racing because the only people I had available to take Jennifer out of the car at home were untrained, not very fit, and scared …… Tom and I.

We drove home at about 30 mph, worried Jennifer did not have enough muscle control or strength to hold herself up properly for the ride home. She was able to stay in an upright sitting position the entire way, thank God! While we drove home I called my BFF Brittany. Luckily, she was just leaving her class and was able to meet me at the house. My dad was at the house with Christian and Olivia but I was worried he would hurt himself trying to help Jennifer out of the car.

When we got to the house, I ran inside and grabbed the wheelchair. Brittany was a wonderful lifesaver because she was the only person at the house with any kind of experience lifting and moving someone in condition Jennifer is in. Brittany, Tom, and I stood at the car talking to each other, and Jennifer, trying to come up with a detailed game plan. I always make sure we are talking directly to Jennifer when we are trying to do something, that way she knows she is an active participant and we are not talk about her like she isn’t there. We all got into position and I was the cheerleader telling Jennifer she was ok, doing a great job, safe, and almost done. We slowly worked her into the wheelchair and Tom wheeled her into the house.

I do not think I have never witnessed a more perfect moment in my life. Tom wheeled Jennifer up the driveway. I opened the door and stood to the side as Jennifer was rolled in. The first thing she saw when she came in the door was Christian and Olivia with the biggest, most excited smiles on their face. Olivia jumped up and down saying MOMMY’S HOME! Christian looked like a little excited angel and yelled DADDY! ….. because he has now decided to call everyone daddy! I could see the pure happiness and joy on Jennifer’s face when she got into the house. I could not have staged a more perfect moment. I kept trying to remind myself to take a picture of Jennifer when she came into the house so I could put it on her Facebook page, website, Twitter, IG, and GoFundMe page, for everyone to see. I was loving the moment so much I forgot, but that’s ok, its an image burned into my brain forever!

Only half the battle was over at this point. We all knew we had to get her into bed. No one was in a rush to move her because this was the first time she was sitting up, in a chair, in over  two weeks. I could see the fatigue and exhaustion on Jennifer’s face when we first got home. I asked her if she wanted to go to bed, she said, “not yet.” The motivation, willpower, and happiness was keeping her going. I was worried while she was in the hospital, that she would lose motivation or give up on trying to fight this horrible battle. The battle she is currently fight is harder than any of us can understand. I would never pretend to understand what she is going through or how physically, mentally, or emotionally hard this is for her. Assuming someone can keep fight or expecting someone to never have a moment thought about giving up is unrealistic. I feel like it is my job to always try to do little things, nothing overbearing and nothing over the top, but just little things to make sure Jen has a reminder to keep fighting, keep going, celebrate the small victories, no matter how small they are. All the little things build up to great things.

Once Jen got to tired to keep going we, as an NFL team during the Super Bowl, all huddled up around Jen to decide how to move her comfortably and without injury. One of my greatest fears is doing the wrong thing, or overestimating our ability and Jennifer falling because of it. Falling and breaking her leg, hip, foot, ankle, etc, would crush my heart because I desperately do not want to hurt her, I only want to make things better. Her Dr.’s were hesitant to send her home instead of a nursing facility. I know if I bring her back to the ER with an fall injury she will not be coming home to her kids, her Dr’s would insist she discharges to a facility. So, in are NFL huddle, we all decided on how to pick her up, who had what job, and of course, I was going to be the cheerleader again! I like the cheerleader job. Just giving constant reassurance, mixed with a peep talk for the group is nice. Tom picked her up by the front I picked her up by the back and we slowly worked her into her medical bed.

When Jennifer was first admitted into the hospital, after the seizure, I told everyone I wanted to find a medical bed for her. Having the ability to raise and lower the top half and her feet, I knew, would make a world of difference in her comfort. Jesus came through for us again, as he always does 😉  Tom found a perfect medical bed online being sold by a woman in Brooksville, who only used it for one night for her father. Sadly, he had to be moved into a Hospice facility. When Tom saw the ad online her jumped in the car and drove to Brooksville to pick it up. This took place on the first day Jennifer started to wake up. At first, Jennifer did not seem interested in the idea of a medical bed. In traditional Jennifer fashion, she was worried about the cost of the bed, because this kind of bed is roughly 600-800 new in the store. Jennifer has never ever, not for one second, been the kind of person who would want Tom, or anyone in the family, to spend that large amount of money on something for her.  Jennifer, any day of the week, would spend 600-800 on her kids, husband, or family, if she could, but she would never want someone to spend money on her like that. Of course, with all of the expense related to her being sick, we don’t have that kind of money for a bed anyway. Tom got her perfect bed for less than 200.00. A mini miracle!

When Jennifer layed in the bed I was hoping she would like it and she would not feel bad about it, get upset by it, or think it was uncomfortable. Luckily, she liked it as soon as we laid her in it. We gave her the remote so she could adjust and raise herself as much or as little as she liked. She was happy with it, and I was overjoyed. Getting her home, out of the car, into the house, and then into the bed took a total of 3 hours. AND our job was not done yet!

Thursday, the 22nd, she was scheduled for her immunotherapy injection. She has been on this immunotherapy treatment since April, when the last immunotherapy stopped working. Normally, Jennifer would pack a lunch, Jessica would drive her down to St. Anthony’s, she would get hooked up to her IV, she would sit and play on FB for 2 hours, Tom would take her home, and then she would tell me about how bored she was. It was a biweekly routine. This time, we had no idea how we would get her into the car, out of the car at St. Anthony’s, and then back into the car and out at home. To do that, we would need at least two full size healthy adults, who know how to move someone in her condition OR could follow direction REALLY well, AND those two people would have to go the appointment with her stay the 2 hours and come back. Basically asking for the moon, all with less than 24 hours notice. When her discharge date was Thursday, we didn’t even worry about this appointment, because all we had to do was put her in a wheelchair and wheel her over there. The Florida Cancer Center is attached to the hospital. BUT nothing in life is easy so we had to come up with an idea asap.

All I could think was, I was the only person able to do the job. I still had two days left of the conference and even though day one was crazy I LOVED EVERY SECOND! I learned so much and genuinely enjoyed every moment. I did not want to miss day two or three. Of course I would do anything on this Earth to try and make Jennifer better. Of course I would skip the conference if I had to and I know my Assistant Principal would understand, she has been a wonderful role model and my go to for all things “new teacher.” BUT I really didn’t want to miss the conference. I felt horrible for feeling that way. I felt like I was a selfish person, only looking out for what I wanted. I explained to Tom, my mom, dad, Brittany, and Jennifer why the conference was important, my intentions and plans for the future, at the high school I am currently working at, etc. Everyone was trying to think of some way we could find the help we needed in the tiny amount of time we had to brainstorm. It was 11pm and the appointment was set for the next day at 1045am.

While we were brainstorming I could tell, the one thing we all could agree on, was we did not want to move the appointment off to Monday. Dr. Diaz specifically said, we CAN move the appointment, if we need to change the date or time that delay WILL NOT cause a problem for Jennifer. Her immunotherapy is a slow process and it is not something that is time sensitive to that extreme. So, we were all full aware that we could move it back and Jennifer would be ok. I would never, even for a second, consider doing anything that might harm her recovery. Even knowing this, none of us wanted to move the therapy back. The determination, teamwork, ideas, help, and care shown by everyone in the family really was wonderful to see. Moments like that, when we all throw 100% into something really gives me a lot of faith and hope, not just for Jennifer’s recovery, but faith and hope in everything.

After about an hour of solid discussion, we could not come up with an answer. The longer we talked the more and more I was trying to deal with the idea of missing the conference. I wasn’t mad or childish, I was just disappointed in the idea of missing the conference and how important it was to me. BUT my willingness to help Jennifer was more important, and I knew that. Out of nowhere Tom comes up with the most obvious answer. The fact that I had not thought of it sooner made me laugh because it was so basic. WHEELCHAIR TRANSPORT LOL DUH!!!!!!!!!!!!! I felt so relieved know there was a possibility I could still go!!!!! We ended the night happy, thankful, and ready to take on the next day.

Starting at 6am the next morning, my mom, dad, and I were either texting or on the phone to each other for 2 solid hours. I only slept one hour the first night Jennifer was home. My mind was racing, worry, fear, hope, prayer, and extreme planning kept me up all night. I got up at a 5am, got myself ready for the conference, woke Jennifer, gave her all her morning meds, told her about the wheelchair transport idea, and raced off to Tampa, all while texting and calling in a never ending circle of questions. The transport for one round trip from Largo to St Petersburg was 145.00 and no Medicaid will not cover this first trip because we did not call ahead and get prior authorization. So once again, as an NFL team we all huddled up to figure out how to pay for this. In the end, she got to her appointment, she got her immunotherapy, and she got home safely.

We are now, trying to take things slowly, constantly working on muscle movement, keeping her comfortable, safe, and happy. Jennifer’s mood, attitude, expression, conversation, and overall physical health has improved since her was released from the hospital. I know it is because she is now in her home, and her kids are with her now.

Last Radiation Tomorrow

Tomorrow will be the last radiation treatment! I feel like this has been a long 10 treatment journey and we should celebrate making it to the end! I wish I could be at the hospital with Jennifer tomorrow, this will be the only treatment I will miss. BUT as long as everything goes ok tomorrow, she will be discharged on Thursday. She will also have her immunotherapy on Thursday.

She is unable to walk, as of now. We are working with physical therapy to help try and build some of her muscle control and strength. Her left side is so weak her left leg looks like there is no muscle left. Her left arm is better than the leg, but it is still weak. I am going to talk with her physical therapist today to see what kind of exercises we can do at home.

When I look at the current situation we are in, I can see how this is the point when patience can either give up or push through. I would never pretend to understand the position Jennifer is in or how she feels about all of this, what I can say is I have a natural ability and desire to always push and push and push. I am always a “can do” person, no matter the odds. My goal is to try and influence Jennifer to take this same attitude.

If it take 45 minutes for her to slowly move in or out of bed, so be it. If it take an hour to get outside, that is fine. As long as we constant look to moving one foot in front of the other and we focus on today, not the total road ahead of us. I think we will make it!

We Need Cheerleaders!

While Jennifer is going through this awful time, I think it would be pretty awesome if we could build an online support system/cheerleaders for her! She needs a lot of motivation, prayers, love, and support during this hard time. She has a really hard road ahead and I know she would love to see the support! Follow, like, share, comment etc!

Instagram JennifersCancerFight

Facebook Jennifers Cancer Fight

Twitter @JensCancerFight

 

Small Steps Forward

Jennifer is more and more alert each day. Her radiation treatments will be finished on Wednesday. Dr. Bloom wants her to stay inpatient until then, to make sure she is ok and there is not too much swelling. Each radiation treatment can cause swelling, she already is battling extreme swelling. The seizure in the ER was because of the current swelling she has, so there is a danger in adding new radiation treatments. We will have to wait, pray, and hope for the best.

Jennifer is getting really antsy about leaving the hospital, so knowing that she will have to wait till Wednesday makes things difficult for her. I am trying to build a lot of support for her on Facebook, Twitter, and Instagram, by sharing her story. I am hoping building this support for her will help her with the motivation, courage, and strength she needs to push through these few days and make it home to her kids!

 

Back to the ER

We are back in the ER. Over the weekend jen was fighting extreme fatigue, exhaustion, and “chemobrain” like symptoms. Thing have progressively gotten worse. We were trying to get her an MRI at St. Anthony’s but she was throwing up constantly, unable to carry her own weight, and lethargic. We stole the wheelchair and trash can from the MRI center at the professional building connected to St Anthony’s, we rolled right over to the ER. Not sure what this random mix of symptoms means at the moment.

Yesterday we went to see Dr. Diaz. After going through the symptoms he believed her thyroid may not be working properly and that may be what all of these random symptoms are caused from. This is really disappointing for everyone. We had many months of positive updates and recovery.

Halloween and The Holiday Season

Jennifer has been doing remarkably well. I have been so busy, I have completely forgotten to update the page about Halloween. 😦 Well, when Jennifer was first diagnosed and we learned the cancer was in her brain, one of my first thoughts, which I don’t admit to very often, was God please let her at leave live long enough to have one more holiday season with her kids.

Well, we had a wonderful Halloween, Jennifer was able to participate as much as anyone could hope for and the kids had a wonderful time. We actually had three different Halloween events we were able to take the kids too. I really enjoyed the fact that I was about to organize and get the kids together and Jennifer was able to enjoy the fun parts.

On Saturday we went to the Largo central park, Spooketacular event. The baby was too young to do anything more than looking cute. Natalie was too old for the bounce houses and the vast majority of the stuff to do, BUT her costume was so cute (and make up on point) people kept commenting and taking her picture. I know she was loving every minute of it!

The baby was dressed up as an elephant because once he started crawling about two months ago, he crawls with his butt in the air, I swear he looks like a baby elephant. I had to cut out the armpits and make some minor adjustments because it was a thick costume, he could have gone trick or treating in any New England city and he would have been comfy, here, I was afraid of heat stroke.

Almost all of the family went trick or treating together. My sister, her husband, the three kids, Mom, Ray, Jessica, and myself. In previous years we have not been able to find a neighborhood that has many trick or treater’s or active houses. This year, we found the perfect place! All night there were families all over the sidewalks, laughing, joking, walking with their little goblins and gools. It was such a fun experience, it was very much a traditional Hallmark style moment.

I have made it my goal for this holiday season, Halloween, Thanksgiving, Christmas, and New Years AKA Natalie’s 16th birthday, that I would do everything I can to organize a memorable and fun holiday event for the family. It has been such a hard year for all of us, so I want to create a better ending to 2016. When all of this started on August, I did not believe Jennifer would make it to Halloween, not to mention 2017. We are all so thankful for the blessings we have received during these extreme times. One successful holiday down, 3 more to do. The theme for the rest of the year is, love, appreciation, care, relaxation, reflection, and family.

Next Big Project !!!

Since Jennifer’s diagnosis, she has become very passionate about raising awareness for cancer’s that don’t get as much attention as breast cancer. All women know about breast cancer self exams and the importance of mammograms but not everyone knows the warning signs of melanoma or brain cancer.

As the days and weeks have gone on, Jennifer and I have had time to think about what we could do, how her story, her struggle, and the lessons our family is learning could be used in a way to help others. We are currently working on starting an awareness group that focuses on all forms of cancer, and the metastatic dangers.

A diagnosis of cancer is a life changing experience for anyone. When a cancer patient is told their cancer has metastasized, the news is devastating. The flood of emotions and fear become overwhelming for the patient and their loved ones. We have learned this first hand. Jennifer and I are dedicated to building an awareness groups that 1. focuses on giving hope to cancer patients who are fighting the battle of metastasized cancer 2. education the general public about the warning signs of all cancers, and 3. offering the tools, information, and resource our family has collected during our journey in battling cancer. We are hoping to be able to specific reach out to cancer patients with limited financial means. The struggle to beat cancer is hard enough, when money is also a problem the fear and hopelessness only grows.

This project is in its early stages and there is more information to come!