A child's view

In our four year old daughter's bedroom there is a beautiful queen sized bed fit for a princess, butterfly pictures, wooden letters spelling out her name that were hand painted by a dear friend, sparkly pink curtains and Strawberry Shortcake decals carefully placed by two little hands. There is a plush rocking horse that whinnies and flicks his tail when you push his ear. There is a book case with fairytales and baby's first books, Dr. Seuss and books about deployment. It is a beautiful safe haven for a little lady. 

I sit writing this in the big comfy round Papasan chair that is in the corner of her playroom. It has a sheer tulle canopy hanging from the ceiling that goes the whole way around it. The room is decorated to look like a Parisian princess's playroom. I love it in here. She makes me things to eat at her kitchen, builds castles with legos, and mixes figures from Toy Story and Tangled when we're playing. 

These two rooms remind me of what she should be focusing on. She should have no weight to carry, no stress on her little heart or mind. She is wonderful at play. She has such a wild imagination and I hope that never goes away. I love the silly things she comes up with, even if other people don't understand what she's talking about, we do. :)

These two rooms are all I can offer though. She now sees extra oxygen cylinders and portable cylinders in Daddy's office. She watches as new medications are introduced and put out of her reach. She listens to phone calls with doctors and nurses and case workers. She sees the hospital bed and hears the whoosh of Daddy's oxygen concentrator at night. She is familiar with the Hospice workers, as well as knowing Daddy's doctors by name. 

She knows her Daddy is sick. We don't lie to our child. She is only four, so we're not in her face about it, but we answer her questions. Tonight was the second night she has said "I don't want Daddy to go to Heaven. If he does, I won't have a Daddy anymore". I thought I had known a broken heart before, but honestly no boy or man has ever really truly broken my heart. A four year old worrying about losing her Daddy did that. She knows quite a bit about Heaven and Jesus. We share our faith with her. We try to guide her little heart as best as we can. She truly does have a childlike faith. She has no doubt of where her Daddy will go if he leaves us, but no little girl wants to lose their hero. Their first love. The strong arms that have always held them tight no matter what. There is nothing I can do to make that better. There are lots of social workers and therapists who offer help. No one can make her feel better about what may happen. It just plain sucks. 

A little girl should be playing My Little Pony and drawing flowers and sunshine. They shouldn't be waking up in the middle of the night crying that they don't want to lose their Daddy. So we pray. We pray that Daddy gets better, that Daddy is no longer sick. She understands his illness in her own way. She knows that Daddy's cancer started in his toe, and for a while he had a constant cough. So she tells people that Daddy has a cough from his toe. She prays that Daddy's cough goes away. I can hold her, and reassure her that we both love her. That every day we have together is special and we should love each other and have fun. I promise her that no matter what, Daddy will always be her Daddy, and she is a lucky little girl because she has the best Daddy in the world. 

My husband feels the pain of her fears. I can only promise him that if something happens, we will do the same things we did for deployments. I know that may sound silly or insensitive, but hear me out. I refuse to let my child forget. During a year long deployment some children become unattached or forgetful of the parent that is gone. There are tons of ways to fight that. A picture in every room. A Daddy doll to talk to when she feels like talking to him. Videos and pictures to watch whenever she wants. Talking about Daddy every day. Letting her voice what she is feeling and giving her an outlet when she is overwhelmed. I'm not a perfect mom. I struggle every day and feel like I'm failing more than not. I can tell you that I love her with all of my heart and it aches knowing what losing her father could do to her. 

We don't dwell on Daddy's sickness. She has questions that pop up and we answer them. Most times she is right back to talking about Disney characters or making up sweet little songs. I try to remember when I was four. I can't say there are a ton of memories. I wonder what she thinks when she is analyzing things I tell her or teach her about what is going on. She is so thoughtful and analytical like her father. I love that. I love that when she is curious, she asks. Tonight she wanted to know about the thing that was making all the noise and the tube in Daddy's nose. A four year old, learning about oxygen and nasal cannulas. Feeling the rush of it coming out of the two prongs and taking everything in that I told her. After the lesson, she was satisfied and snuggled up to him to have her story read. Our new normal. Medical equipment mixed into our daily routine. Her taking it in stride knowing her Daddy is still her Daddy. He's not scary or different, he's just Daddy. I hope for a lot more nights of her crawling into our bed, cuddling between us, feeling safe. I want that for her for as long as possible. To tell the truth, I want that for me as long as possible. 

Tomorrow night, I believe I should tell you a real life fairytale...

Goodnight. 

Boundaries

We have so many sweet friends and family, and we appreciate every single one. I do realize, however that we need to start voicing our wishes and speaking up. This is not meant to be an attack or to say we aren't thankful, just letting people know what we need. 

As an EMT I understand wanting to give advice and offer solutions. I am a proactive person and don't like to just sit around and wait for things to happen. I like options, I like being positive, and I like hoping for the best. This being said, there is also a rational, medical side to my brain. I believe God gives man the knowledge and capability to advance in medicine. I believe we work with God to save lives, and if we don't get the victory, then there is a reason for it. 

Since the Major was diagnosed we have had an outpouring of love, support and prayers. We cannot express how thankful we are for those. We have also been getting emails and letters and messages about tons of different treatments for generic cancer, different diets, herbal cures and holistic healers and hospitals. I am not discounting these. I am not saying they don't work. I do believe people have been helped and I believe we should ALL do better at living a healthier lifestyle. I believe there are worse things in our foods than there used to be. I believe environments have changed and affect our bodies. I believe some people are exposed to things that cause illness. And with that I must continue with the negative. 

We appreciate opinions and others doing research on our behalf. There is a point though that we run into overload. There are so many things being thrown at us, and maybe people don't realize that. And when we don't seem to be taking it as gospel or trying every single thing that is offered, we are viewed as people who give up. People who don't really want to beat this cancer. I must stand firm and say THIS IS NOT THE CASE. Another thing people may not understand is that every type of cancer is different. Every body is different and people react to things differently. The hubby has a toe based melanoma. This was not caused by the sun, but is more to do with environment and genetics. He has been exposed to so much we aren't aware of in the odd countries he has been deployed to. There is no way to know what caused it. What we also know about melanoma is that technically it is not a "curable" disease. That doesn't mean people don't go into remission. Once you get to the point the Major is at - Stage IV Metastatic Melanoma - there is a very low rate of remission and survival. I am NOT saying it isn't possible. I believe in my husband more than anyone. I know what a fighter he is. I know he will never give up. But we are both realistic about what MAY happen. 

A military family walks a fine line of planning for the worst and hoping for the best. So to say we were equipped to deal with this situation is pretty accurate. Just because you may see us using Hospice or stoping chemo treatments doesn't mean we don't believe there may be a better outcome. My husband does not sit on the couch all day and say "Oh poor me". We live. Every day we wake up and breathe, we keep moving. 

Now to the point of what we need. Besides prayers, support and love, we need FRIENDS. We need people to talk about normal things. Reminisce with us, tell us about your life and what is going on. When you are with us, forget about the cancer. The Major is still a person and he still enjoys day to day things. He is still the biggest Yankee fan and is interested in Spring training right now. He still loves talking about current affairs and the military. He is a history buff and is so knowledgable about the Civil War. We aren't cancer experts. We aren't researchers. We don't sit around and talk cancer. Who wants to do that? It hurts me to think this is all people think of my husband now. A man with a horrible disease that may ultimately kill him. How awful must he feel to think that's all people will remember? 

Last night he asked me "What have I really done with my life?" Which tells me he is forgetting all of the ways he has touched peoples' lives. He is focusing on the cancer. This is not what anyone would want for themselves or their loved ones. So I beg of you, call, write, visit - PLEASE! We love you all and welcome you into our home. But PLEASE know there is a living, breathing soul here. He loves and lives and jokes and is still "W". Don't write him off. Don't focus on pity or despair. Remind him of the person he is. Remind me that you are as happy to have wonderful memories of him as I am. 

With all the respect and love I end this blog post. If I have offended, then so be it. I will stand until my last day and fight for my family. And I feel this needs to be said. 

Updates

After the last blog I wrote, telling everyone of the Major's terminal prognosis, I admit I have stayed away from this blog. The funny thing about someone who loves to write is that you always seem to be doing it in your head anyway. I just didn't feel like letting the words come out. Some of you may know that things have taken a turn for the worse. Facebook posts only let you know so much, though. And unfortunately some people seem to be misinformed and I can only blame myself for that. So we'll start from hubby's last appointment with his oncologist....


The Major had been doing well, the weight was coming off from the steroids that he had been on to take the swelling off his brain that was caused by the brain lesions. The brain lesions had responded in a good way to the cyber knife. The lesions in his body seemed to be stable and we were under the impression the Temadur was doing something. The oncologist was pleased and we were given permission to go to Hawaii. A PET scan was scheduled for the day after we arrived home.

Our Christmas present to hubby's parents was taking them along to Oahu. We had lots of things planned, taking the Tink back to Disney Aulani, spending some time in Waikiki, and ending our stay at Turtle Bay. I was so happy to have the Major healthy enough for such a big trip. Things were looking good and we were even planning more trips for when we got home. Disney World, Alabama, Texas, and the Carolinas. We were confident that the trials we found would begin soon after we returned from Hawaii.

Things started out well once we landed in Honolulu. It was as it had been the year before when we were there. People are so sweet and wonderful. The atmosphere is laid back and comfortable. We all took a proverbial sigh of relief being away from doctors and other stressors. In the mornings came fresh fruit, fish and juice. The afternoons were play time and the evenings were exploring and unwinding. The weather was a bit more chilly than it had been the previous year, but it was still better than what we had left on the East coast.

We enjoyed kayaking, playing on the beach, in the ocean, in the pools, going down water slides, whale watching and driving around the island. We were meeting wonderful people and having great experiences. Life was finally good.

We spent 6 days at Disney Aulani. After that we went to Turtle Bay. We chose to stay in the ocean side villas as we did last year. It's something pretty amazing to have world famous waves crashing right outside your door. Having the sound of the surf lull you to sleep at night. Wake up in the morning to go looking for the turtles that come ashore. Heaven. To me, anyway.

I had wrestled with the idea of getting another tattoo in Hawaii. I knew what I wanted, but I wanted some polynesian flare to it, so we made the decision to go for it. Most of you have seen the photo. It is a butterfly above my ankle and the body is a melanoma awareness ribbon. The rest is a polynesian tribal wrapping around my ankle down to the foot and ending with plumeria flowers. The Major sat with me and held my leg because I could not control the nerves in my foot from twitching. It was the most painful tattoo I can imagine, much more so than my first one.

We had plans for sunset horseback riding the next night. This is what I had been waiting for. I love riding. I love horses. I love the beach. I love Pacific sunsets....so again, perfect. The night we got home from getting my tattoo, the Major let me know he was in pain. He had been lifting our daughter that day, playing in the ocean with her and pushing himself. I thought maybe he had pulled a muscle or aggravated a hernia that has still not been repaired after 2 years.

When we went to bed and I could see the pain on his face, I examined his abdomen and found distention and a hard mass. It was in the area of his gall bladder. I wanted to take him to the ER, but he insisted he just wanted to go to sleep and wait until the morning.

The next morning when the Major woke, he couldn't move without the most intense pain. The distention had gotten worse, and I couldn't even palpate his belly without him wanting to scream. I knew I was not going to get him in a car. I called 911. Thankfully the hubby's mom was able to watch little tink and his dad drove the rental car to the hospital.

We were taken to a small, community hospital ER. The people were so kind. The Major's nurse was the sweetest nurse I had ever met. She had a part time job at a local Starbucks and made me coffee and tea the whole time we were there. She gave the Major a hard time (we like that) and treated him like a king. His every need was taken care of and so were ours. Hubby had a CT scan done, and the results showed a mass in his abdomen. This was no surprise since that mass had been there for a while. The doctors wanted him admitted. At that point I chose to have him transferred to Tripler Army Hospital in Honolulu. It is a large facility equipped with up to date machines and lots of staff. Not to mention a built in support system for our whole family.

The Major was transferred from ER to ER, highly medicated and slightly snowed. He was still in pain, but was able to rest and sort of be oblivious to everything. We waited for consults in Tripler's ER. I can't tell you how long, I just know that our total ER time for the day was 12 hours. I was filling in the nurses, doctors and surgeons since we had no records along and they were only getting what was in the Army system, which wasn't much. They had no scans to compare to. I put them in touch with the hubby's oncologist back at Hopkins.

In the meantime, vascular surgery came to visit. He stated that the tumor was pressing against the hubby's inferior vena cava and was squishing the greenfield filter that had been put in place in December when he had DVT and a pulmonary embolism. He said that wasn't a problem because the tumor was acting the same way the filter had been working and that it seemed the hubby's body had adjusted and found other ways to get blood flow around his body, bypassing the IVC.

Next was general surgery. They reviewed the scan and stated that the tumor was now at 16cm. Talking with the oncologist back east, it had doubled in size. Now the tumor was either in or right around his liver and the surgery to remove or resect it would kill the Major. If not on the table, the 6 month recovery time would do him in.

I was feeling frustrated. At that point all I was getting were "can'ts" Stop telling me what you can't do and tell me what can be done, is what I said to the ER doctor. She told me they were working on getting him admitted. I asked what they planned on doing since surgery wasn't an option. Then came the face. Only certain people know this face. Either you work in the medical field or you have gotten this face as a family member of a patient. I have had the unpleasant experience of having it both ways. I could feel the tears started to build up, the lump in my throat rose. I asked "How long?" She responded "Could be weeks". I tried to hold back the sobs. I thanked her for being honest.

The Major was admitted to the oncology floor and settled in by 9PM. His father and I had to return to Turtle Bay to pack and check out the next morning and get everyone moving. Our flight was to leave that evening around 9. I was anticipating a long, horrible day of canceling my flight and the Major's flight, getting the in-laws and little Tink to their flight, returning the rental car, and being stranded at a hospital until the Major was fit to fly.

Upon arrival to the oncology floor, I was met by hubby's nurse for the day. A very kind and sweet LT. She had already talked to the social worker and nurse case manager and everyone was working on getting the Major back to the mainland as soon and as comfortably as possible so he could be at Hopkins. His pain was being managed with high doses of IV meds as well as oral meds. He was in and out and barely able to stand. He was unable to sit upright, but instead had to be in a reclined position. His pulse ox kept falling into the low 90's, high 80's and so he was on constant oxygen. Since the rooms in the hospital were 2 bed rooms, the nurses came together and got the Major in a very large, pink reclining sleeper chair and wheeled him to the private family room so we could all relax and visit and watch tv together. Things were turning out better than I had hoped.

The admitting doctor came to chat with us, and told me to go ahead and cancel the flights for the two of us that night, that they were working on a medevac out for us. I did as I was told. Happy that we had purchased the travel insurance, and that they were already working on a letter to give to the airline company so we would get a refund. The airline reimbursed our card and the flight was on time for the in-laws to go back with Little Tink. They would return the rental car and I would stay that night with the Major in his room on the sleeper chair and spend the next night in the Fisher House so I could shower and get some sleep in a regular bed before our trip home.

The social worker came and stated they thought a commercial flight home in first class would be better than an air evac flight as there would be less stops and more comfort. They were arranging that for Saturday. All seemed to be well and I was relaxing. We were enjoying the hours with our family, as much as you can in a hospital, and making friends with the soldiers.

By the time the hubby's parents were leaving, we were all worn out. I hated that my little girl was leaving without me. She has flown so many times I have lost count, but this would be the first time she ever flew without me. I promised her we would be home soon and that I would take care of Daddy. And then they were off.

The Major and I were moved into a private, ocean view room and were again referred to as the place to be when it came to the nurses and aides. Who needs grumpiness in a hospital?? We don't believe anyone does and try to have a good time. The night went well. The next morning I woke up and found some decent coffee. People were coming by to offer different kinds of support and checking on the hubby. By mid morning we were both napping.

I remember waking to the door slowly opening. I saw the nurse case manager's face. Behind her was someone in the Navy (he was higher ranking, but I don't know Navy rank). I told them to come in, hoping it was about our flight itinerary. This is roughly how the conversation went:

"Mrs. W. I have talked to TriCare and the are saying they will not pay for your flights home as you are on vacation"

I blinked. Thinking I was still asleep... "What did you say?"

"TriCare will not be paying for your flights or arranging a medevac, so you will have to find your own way home"

Now shooting straight up to a sitting position in the chair... "What do you mean? You told me to cancel my flights for last night and he can't fly in a regular flight. Plus he is supposed to be a direct admit to Hopkins. You were going to have an ambulance pick him up and take him from the airport."

"I know, ma'am but you will have to find your own way home now"

"WAIT! ARE YOU SERIOUS?" ----Navy guy trys to interrupt "NOT ONE WORD FROM YOU!"

Turn to the nurse "YOU TOLD ME THIS WAS TAKEN CARE OF!! HOW DARE YOU COME IN HERE AND TELL ME THIS IS MY PROBLEM AND LEAVE ME TO DEAL WITH IT ALL ALONE! WE WOULD HAVE BEEN ON THAT FLIGHT LAST NIGHT IF IT HADN'T BEEN FOR YOU AND NOW YOU'RE TELLING ME, TOO BAD??? NO! NOT ACCEPTABLE!!! YOU GO GET THE COMMANDER RIGHT NOW"

"But ma'am"

"NO, NO BUTS. YOU GO GET THE COMMANDER, OR I WILL MARCH RIGHT INTO THE ONE STAR'S OFFICE AND GET YOU FIRED MYSELF. THIS IS NOT HOW IT'S GOING TO BE. YOU HAD ME CANCEL OUR TICKETS AND NOW YOU WANT ME TO BUY SAME DAY TICKETS??? DO YOU KNOW HOW MUCH THAT IS GOING TO COST????? THIS IS YOUR PROBLEM AND YOU ARE GOING TO FIX IT"

They turned and left and I was fuming. I have never felt so irate. I walked out of the room because the Major had fallen back asleep. I went up to the nurse's station and made sure his nurse knew what was going on. I again demanded the commander. They were getting him.

I called hubby's nurse case manager for his unit and being the wonderful human being that he is, assured me he would get help, and I had every confidence he would.

I then called hubby's oncologist at Hopkins because I wondered how in the world a hospital to hospital transfer could be put on me? This is how that conversation went:

"Hi Dr. S. The Army is now telling me since we are on vacation that they will not fly us home, and the Major is in such pain I have no idea what I am going to do to get him there. My impression was it was a hospital to hospital transfer and you would be admitting him when we landed."

"I didn't say he needed to be admitted, I said I would. Do you think it's best to fly him home?"

"Well, he's in a lot of pain, but if I can get him first class, he can lie back and it would be better. I want to get him back there so you can see him."

"I have spoken to the doctors there and reviewed the records and reports and I don't know if it's best for your husband to fly. Could you stay in Hawaii?"

"What do you mean stay in Hawaii? Until he's feeling up to it?"

"..........."

"No, you mean until he dies. YOU MEAN I AM SUPPOSED TO STAY HERE BECAUSE IT ISN'T GOING TO BE LONG ENOUGH FOR ME TO EVEN GET HIM HOME????"

"I don't believe it will be long, and am afraid of what may happen in the air"

"I HAVE NO ONE HERE. WE HAVE NO ONE. HIS PARENTS LEFT, OUR DAUGHTER LEFT"

"It won't be long. Can you get your daughter back there?"

"Yes. I will do what I have to do. Thank you for being honest"

I hung up as the nurse case manager as well as some higher ups were walking toward me. I fell to the floor in uncontrollable sobs. They looked at me and turned and walked away. I believe that is the most desperate and lonely time of my life. They walked away as I had just received news that my husband would be dying in a hospital 5,000 miles away from anyone we knew. I was alone. Totally alone. And then, God put the person I needed where I needed him to be. A psychiatrist that had met with us the day before came rushing up to me. He said "I was finishing with a patient and I felt this urge to come see you guys".

I filled him in on the situation in between sobs. He and the hubby's nurse calmed me down. We started to rationalize options so we could present them to the Major. We then went into the room to tell him everything. The cool, calm, collected Officer that he is, he looked me right in the eye and said "I want to go home". You see, I had made him a promise a long time ago, I promised that he would NOT die in a hospital. No matter what, that wasn't going to happen. And he knew that I would fight to get him what he needed. I said "Ok" and wiped the tears from my eyes and started on a mission.

We met with a full colonel, a lt. colonel and a major as well as a few doctors. A few minutes later we were handed a fully paid flight itinerary for the night. We would have to pay for the upgrade to first class, but I didn't care.

That night, the Army provided a van and a driver, helped us with our bags, wheeled the Major outside and as we loaded things into the van, he looked at me and said "I don't think I'm going to make it home". Swallowing every ounce of fear and sadness I said "YES YOU ARE". We got to the airport, upgraded and were the first ones on the plane. I must say as horrible as the situation was, we quite enjoyed first class.

The Major dozed most of the way. I cried a lot because his skin was gray and his lips were blue. He was cold and his breathing was shallow. I felt sure I would lose him before we landed in Baltimore. I kept praying to just get him home. Just get him there and let him be surrounded by family.

We made it home. My dad picked us up at the airport and the Major had enough energy to request a steak at Texas Roadhouse. I was so happy to see him eat for the first time in 4 days. The Major's mom brought Little Tink that night, and his sister brought our little puppy man home the next day. We received a visitor that Saturday. A wonderful friend from Alaska. She and her husband had PCSed to Germany and she was visiting the East coast for a while. I had warned her that the Major wasn't good. I was afraid that morning that things were going down hill fast. The signs were there, and having seen it multiple times I just wanted as many people with us as possible.

Then something amazing happened. Our friend arrived and the Major perked up a little. He forces himself to ignore pain and put on a good face for people. As the day went on, he was able to get up and move around. He rode with his sister to pick up some pizza. Then that evening his best friend came the whole way from PA to visit. The Major kept looking better. He was eating and drinking, going up and down stairs. Still in pain, but the fight had come back.

The next day Hospice came to admit him into their care. All of our fears and misconceptions about Hospice were squashed. The organization is wonderful. We have a loving, caring nurse who has a sense of humor that matches ours. They switched the hubby onto non narcotic pain meds so he can be awake and active. They got us oxygen for when he needs it. They provided us with a kit so I don't have  to freak out and make trips to the ER for minor things. They have equipped us with knowledge and 24/7 help. They have people for round the clock support. We are able to relax. And they are not here to condemn him to death. They don't even talk about it. They don't pity him. They encourage him to get better and stay active. The cheer him on. It isn't a depressing thing. They aren't taking his dignity or choices away. He is in control. He is able to travel and do what he pleases. I can't tell you what a weight off it is.

As far as his oncologist giving up on him, I've said my piece to him. I've made him feel absolutely awful and was so happy to see the surprised look on his face when he saw the hubby doing so well. I told him he made a mistake giving up on my husband. He is a fighter. We both are. We won't give up. Hospice doesn't mean we are giving up. It means we are leaning on people. For the first time in our lives we are accepting help in hopes that whatever happens is a peaceful, stress free experience.

Thank you all for your love and support. I will try to do better updating on the Major's condition and our day to day experiences.

As of now, the abdominal mass is 16 cm. The masses in his lungs have grown considerably and have multiplied. There is a mass above his bladder that has grown. Those are the things they are most concerned about now. Pain is being managed but he is fighting. He is up and moving. He isn't depressed or angry. We are enjoying time. We covet your prayers and have thankful hearts for every second of every day, and for our friends and family.