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.

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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.

Diagnosis

Jennifer first found a spot of Melanoma on her lower back in 2007. Tom noticed a mole that looked like it was getting large and odd shaped. She made an appoint with her doctor and they determined it was melanoma and needed to be removed. We were all nervous then but it was a simple procedure and removed quickly. The second time, she found a spot on her shoulder. Again, it was quickly found and removed. At the time, we did not think this would become a long term issue. We felt blessed and so thankful that we found these two spots and quickly had them removed.

This time has been different. This time there wasn’t a skin melanoma spot that we could quickly find and remove. This time, Jennifer felt a bump in her breast. We were not sure how long it had been there before it became large enough to notice. She had just had a baby, a short 6 months earlier. She focus was completely on the baby. She made an appointment with her doctor. It took almost a month to see the doctor. The doctor quickly determined a mammogram, ultrasound, and biopsy was needed. We all had to wait two painstaking weeks for the test to be done and results to come back. On Friday, July 29th, Jennifer received a call saying the bump was benign. We were all so happy, we decided it was the best birthday gift our mother, Sharon, could have ever received. That following Tuesday, at a follow up appointment with the doctor. Jennifer was told that no it was not benign, it was malignant and he was not sure why she was told otherwise. Our world was changed from that moment on.

As fate would have it, that day, about an hour after receiving the news, Jennifer began to feel numbness in her left arm and leg. She became very lightheaded and dizzy. We brought her to the ER thinking maybe she was going into some kind of shock, because of the news. The ER doctor quickly determined she was not having a stroke and admitted her because the location of the previous biopsy looked infected and sore. When he was admitted tests showed she had cellulitis in the skin around the biopsy spot. The following day she had a MRI, CAT Scan and CT scan. The doctor was worried the cancer may have spread, because the cancer in her breast was large.

After all the results came back, we received the news that would change our family forever. There are very few moments in life when you know your entire existence has forever been altered. Before receiving the test results we were very confused on how melanoma could only show under the skin. There wasn’t a skin cancer spot, like every other time. We couldn’t understand how melanoma could happen in the breast. Dr. Jones came in the room and told Jennifer the cancer has spread to her brain. Mom was on speaker phone so she could talk to Jennifer and the doctor, each time the doctor came in. I thank God every day I was sitting with Jennifer the moment she realized how serious this is. All she could do is cry, ask me what she did to deserve this and repeat over and over how she did not want to die. There was nothing I could do, besides hold her, cry with her, tell her she did nothing to deserve this and we WILL fight this together.

Since that time, all over lives are different. Jennifer is in the fight of her life. I have declined my offer to go to Jerusalem for a year. My dads house now has 7 people live there. My mom has become the spiritual adviser for the entire family, or as I like to call it “tribe.”

A few days after the diagnosis of metastasized melanoma that has spread to the brain, Jennifer began radiation treatment. After 10 treatment the doctors will determine if targeted radiation or chemo is the appropriate next step. 13924875_1216070821746083_1918320945108808144_n