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Saying Goodbye

Shelly passed away October sixth. I haven't been able to think of exactly what to say in this post because it's still so raw. She was coughing a lot the last time I saw her which was a few days before she passed. Then she began turning away visitors, wanting to spend time just laying in bed with her kids. Then she couldn't keep any food down. She had leukemic meningitis and in her last twenty-four hours she starting getting stiff all over, then came the fever. She was out of it for the most part. By Tuesday, the sixth, it was obvious that it wouldn't be long.

I called that day around 11:30 and the machine didn't even pick up. I really wanted to get over to see her and I knew she wasn't feeling well so I wanted to make sure it was ok to come. When I called back about a half hour later I got the machine and began leaving a message, "Hi! It's Nicole, I was just calling to see how Shelly's doing -" My mother-in-law picked up hysterically crying, "She's not! Shelly just passed!"

Wow. Now I had the job of telling my husband. I called my mom crying and then my brother who worked with my husband, Bill, at the time. The best plan to tell Bill the bad news would be to just show up at his work, my brother would bring him outside to me and I could tell him, then drive to Shelly's house to be with everyone. My mom came right over to be with my kids so I could leave. When I got to Bill's work I texted my brother and he brought Bill out to me. He took one look at me and said, "Is this what I think it is?" I just shook my head yes and he broke down sobbing and yelling.

At the house, there were so many cars that finding a spot to park was next to impossible. Family and close friends all came to grieve together and also offer support to Shelly's husband Cliff, the kids and my in-laws. Someone had taken her two kids out of the house that morning, knowing she was dying. Cliff had the rough job of explaining to the kids what happened to their mommy. When they came home, he took them into Shelly's room and as soon as he opened that door, her son (who's three years old) said, "Where's Mommy?!" After the three of them came back out, everyone got quiet wondering if the kids would cry or even understand what just happened. Her little boy announced to everyone that his Mommy died, very matter-of-fact. Then he wanted to put on his Halloween costume and I couldn't help but feel so horribly sad at the fact that she won't be here for Halloween. It was really a big deal for her to be with the kids while they Trick or Treated. Her son talked about his costume, Captain Hook, and then asked, "But what's Mommy going to be for Halloween?" My mother-in-law quickly said, "An angel." He was fine with that answer and went on showing off his costume. Her one-year-old daughter was just too young to grasp what was happening.

Cliff looked like a zombie, everyone took turns just sitting with him, hugging him, comforting him. My mother-in-law would jump back and forth from getting her thoughts together about the viewing and funeral to zoning out to crying uncontrollably. It was so incredibly sad.

Friday night, the ninth was the first viewing. A bunch of us made picture boards to put around the funeral home and family turned in photos to cycle through a slideshow on a flat screen TV in the one room. Hoards of people showed up to see her, family, friends, old co-workers, old classmates.......everyone was still in shock. Saturday was the second viewing and then the funeral.

Any kind of recovery from this has been extremely slow. My mother-in-law has not left Shelly's house. She is there everyday and every night taking care of the kids since Cliff has gone back to work. She is so depressed and just can't move past Shelly passing away. My husband is in the same boat. He misses her so very much and can't seem to heal at all. This past Saturday we did the Light the Night walk over in Philly for the Leukemia/Lymphoma Society. Shelly had asked all of us to join her team and fund raise for this walk a couple of months ago. Her friend Jenn really ran with it, becoming team captain and together we raised close to $6,000!

It was bittersweet to be there without Shelly. We all carried red balloons which signifies that we are supporters. We wore shirts and pins and put orange (for leukemia) and yellow (Shelly's favorite color) ribbons on our cars. Cliff tied a gold balloon on the kids' stroller, gold signifies someone you lost to cancer. Our team walked 1.7 miles in the monsoon that was the down pouring rain. There were massive puddles that were literally knee deep. I took my double stroller for Dare Devil and the Princess and Big Brother walked with my in-laws. There was lightning and strong wind on top of the never ending pelting rain. I don't think I've ever been outside in such bad weather. But you know what, we all laughed and screamed and joked the whole way through. It was the happiest I've seen everyone since Shelly's diagnosis. Bill yelled up to the sky several time, "Haha! Very funny Shelly!" There were other teams retreating back to the starting line but we pushed on until we reached the end when we screamed and hollered and clapped. Besides, after what Shelly went through for ten months, this was nothing! Back at the car we realized that everything in stroller was drenched, jackets, snacks, the entire diaper bag and its contents. We were completely, and I do mean completely drenched and so were the kids. But they were all laughing! Dare Devil thought it was great taking a stroll in the pouring rain, at one point he and Bill's Aunt Joyce were yelling "yee-haw" and we ran through huge puddles and pushed up muddy hills. I know Shelly was up there watching us and laughing.

We plan on doing the walk in her honor every year, after all, she'd do the same for any one of us.

SHELLY

During Cancer

Light The Night

Our lighted ballons against the night sky...............Team Love 4 Shell

Shelly, you will always be in our hearts! Love you!

Holding On Tight

I've been at Shelly's as much as possible since she's been home. I feel like I should help in anyway I can since I know she would do the same for me or Bill in a heartbeat. Plus I selfishly want to suck in as much time as possible with her before there's no time left.......

Her husband, Cliff has been amazing. He really seems to be holding it together but I could see him at different times holding onto her, afraid to let go. The other day Shelly fell asleep on the couch so I was trying to keep everyone out of the house and going in for things needed myself, like napkins, drinks, etc, so she wouldn't be disturbed. I had to prepare myself every time I walked in the door though because there was Cliff, laying on her with his head on her stomach and his arms wrapped around her, asleep, but holding on tight. It was such a beautiful and sad thing all at the same time. Because Shelly is now blind, Cliff walks with her around the house. She is also very weak so he walks behind her with his arms around her waist and they walk slowly step by step together. Last night at dinner there was an older slow song, I can't remember now which one but it doesn't matter, Cliff was walking her to the table and he began swaying her lightly side to side and singing the song in her ear. Again, a beautiful thing but so sad at the same time.

When I brought my kids in to see her the other day for the first time in months Dare Devil ran over to her and hugged her so tight, laying his head in her lap and not wanting to get up. Anyone else usually gets a short hug but not Aunt Shelly, he didn't want to let go of her either.

My mother-in-law said she's been getting weaker, sleeping more and that they have to keep waking her up. She knows that this is probably the beginning of the end but she said that they selfishly want more time with her which is why they only let her sleep for so long. I don't think that's selfish at all.

Who knows what today could bring or tomorrow or next week? For now everyone is just holding onto Shelly sooooo tight.

Change of Plans

I visited Shelly today and yesterday. Everything still feels like one bad horrible nightmare. It still just doesn't feel like it's really happening. It's so hard to look at her, she was always this bubbly beautiful woman with glasses, curly hair and a huge smile that could light up the sky. Now she looks so old, no hair, since she's blind she doesn't need her glasses anymore, she's so thin and frail, her smile is small and weak but it's still there.

I sat last night and let myself cry over all the things that we had planned to do or not do that won't or can't happen now. I laughed over the fact that we had said years ago that we'd never be minivan moms, we'd only drive SUV's and then we both wound up getting minivans anyway. I cried over the fact that she will never get to see our daughters both dressed as Tinkerbell this Halloween which we had talked about over the phone when she was in isolation. Her one hundred days of isolation after her bone marrow transplant was to be up right before Halloween so she was really looking forward to Trick or Treating with the kids and see our kids together which we tried to do every Halloween. I cried over the fact that we had been so happy that our my youngest two and her two were so close in age and would grow up together, and now she won't see that happen. I cried over how much she was looking forward to taking her kids to Disney next year and now that won't happen. There is so much more.

Today is my birthday and on some level I cringed every time someone said, "Happy Birthday!" because I felt so guilty that I get to celebrate one more birthday when she won't. How can I be happy at a time like this? This is just not how things were supposed to work out at all. I keep feeling like tomorrow I will wake up and things will be back to normal, Shelly will be fine, no cancer, and this will have all been one big, bad, horrible, nightmare.

Not Fair

There are a lot of things in this life I don't understand but lately I've been struggling with the biggest one. Why would God make someone so kind, loving, giving, understanding, young with kids suffer with an aggressive form of cancer? My husband's cousin, Shelly has been battling Acute Myeloid Leukemia since four days before last Christmas. As soon as the doctors discovered it, they admitted her the next day to begin treatment so her and her husband had an early Christmas for their kids, Riley who had just turned one and Aidan who was going to turn three in February. She's been in the hospital for months on and off ever since with chemo and radiation and in July she received a bone marrow transplant. We all thought that would be it, that would be the answer, after all she is only twenty-seven years old, how could this be the end of her life?

The past month has been a blur for the family. Shelly had a bone marrow biopsy and found out that the cancer came back with a vengeance. Then she wound up in the hospital a couple of weeks ago with a fever that would not leave and a head to toe rash that they said may have come from Graph Vs. Host disease. Because she was in there for over a week she missed Aidan's first soccer game. Finally after numerous tests including spinal taps galore, the fever left and she came home last Friday night. By Sunday she was having seizures and going into convulsions. She had to be taken by ambulance to a local hospital where they found out that her leukemic cells went through the roof and she was transported back to her regular hospital for treatment. Just in the hour it took to get her over there her numbers had jumped up 10,000 to 175,000 leukemic cells. They got her set up on a pheresis machine to filter out the white blood cells and bring down the leukemic count, it did work but it's not a cure.

Sadly over night the other night, Shelly had a hemorrhage behind her eyes which detached the retinas from both eyes and she is now blind. The doctors said they have never seen anything like this and don't know why this happened. She's terrified and so am I.

I saw her yesterday. I've stayed away at the caution of family because I have school age kids and the risk of germs was too high, but things have changed, I need to see her. She couldn't see me when I talked so she reached for me and held my hands. She could barely talk, she still has no hair and her head, face and neck are swollen from fluid. She can't stop shaking and can barely control a small bottle of water to drink out of. There was blood all around the back of her neck and head. The light was gone from her and I felt like I wasn't talking to a twenty-seven year old anymore but someone in their seventies. She kept saying, "I'm so scared" and then she'd get angry and curse.

I couldn't help but sit there and think about how she'll never physically see her kids again, or pictures that they draw for her. She was so worried about going trick-or-treating with them a few weeks ago and now she won't be able to see them in their costumes. My mother-in-law and Shelly's husband are telling her that the doctor's are talking about maybe doing surgery down the line to fix the blindness but that's more to keep her spirits up, that may not be a possibility.

If it's God's will to take her than why hasn't he done it already? Why torture her like this? Is there a tug of war going on over Shelly here, between us and God? Is that why she's still here but suffering so bad? I can't stop thinking about how I was at a BBQ this summer at Shelly's and even though she was thin from the chemo and her hair was just starting to grow back in, she looked healthy and normal and happy and fine. Now it's something out of a tear-jerker movie.

I can't cry in front of my husband, or the rest of the family. They're all a mess, and rightfully so. I don't want to add to that, I wish I could fix this somehow, I wish there was some great idea that would solve a lot of the problems going on right now. But there's nothing, no words, no actions that could fix any break or hole in any of their hearts. Everyone is dying a bit right along with Shelly, including my son, Big Brother. He's not crying, he's trying not to anyway. He's been fighting back tears all week. Instead he's getting mad, really angry and nasty. He loves Shelly very much and he's scared and confused and he's seen death up close before but this is just too real, too close, too much for him. The school offered their guidance counselor and I might have to take them up on it.

For now, I'm waiting for a phone call, with any update. Bill's going up today but first he has to pull himself together and I have to convince myself that this is really happening.......

Take a Breath

This is my first post in a very long time. I feel like I haven't had time to breathe let alone post anything. We spent the summer working with a child study team for Dare Devil to see if he qualified for a special needs preschool. At first glance they recommended a regular preschool, he seems smart, he can walk, talk, see, and hear (we think) on his own unlike some other kids in the program. But they said that if he were to get "kicked out" of the regular preschool then they would of course accept him no questions asked. They agreed to continue with the evaluations also. We met with a psychologist, case worker, teachers, speech therapist and by the end of the summer they all agreed that he qualified for the special needs preschool without question. His ADHD is severe enough and his behavioural issues are also enough of an issue even though they all pointed out that he's a very sweet loving little kid. He enrolled in a class of eight kids with one teacher and two aides. This was a big weight off our shoulders. Then we had to take him for an EEG to check for seizures. They basically put him in a straight jacket for an hour while they did the test. I had to keep him up until midnight the night before and get him up at four in the morning that morning so he would be sleep deprived. He was a real trooper though! And thankfully, they didn't find any seizures.

Over the summer my dermatologist continued doing biopsies on me and found some more pre-melanoma areas. Some were more severe than others and I had another surgery done last month. When I went back to get those stitches removed a few weeks ago they did four more biopsies, I am still waiting on those results.

We took Dare Devil and The Princess for ultrasounds of their kidneys to keep an eye on them. I also had to make a trip back to the hospital with The Princess for another VCUG (she was NOT a happy camper) to recheck her reflux. At the checkup with the urologist he said that we're going to hold off on redoing DD's VCUG until late Spring because we're potty training and that experience could hinder the process but that his kidneys looked good in the ultrasound. With the Princess, her reflux miraculously came down a little but not significantly enough that she'd be ok if she were to get another infection. It was decision time. We had to decide if it was best to wait it out and see if the reflux continued to downgrade or to go ahead with the surgery we had to wait all this time to perform. If we wait and she gets another infection, she could die. Or if she doesn't die, because she already has kidney damage she could wind up on dialysis if her kidneys get further damaged. There is a 90% success rate with this surgery. So we're going for it. I had to wait for a phone call letting me know when the surgery would happen because the doctor's schedule was booked solid until December. I got that call Wednesday outside of the kids' school letting me know it will be this upcoming Wednesday. I had to take her for blood work yesterday and Monday she sees the urologist for an overall health check to make sure she's ok to go in for this. She should be in the hospital for about three days if everything goes smoothly. Of course there are risks galore and I'm scared out of my mind right now but I've been scared every day since we almost lost her (which will be almost a year to the day of her surgery). I want this fixed.

We had to see the cardiologist for DD yesterday to check on a murmur that he was born with and evidently never went away. They did an EKG and ultrasound. The murmur is fine but they found a jet shooting blood in his pulmonary artery. Just another thing to keep an eye on.

My husband finally got a job, it's not glamorous but hopefully it will help pay the bills. He started last month. He works close to twelve hours a day so the kids go everywhere with me, doctors appointments, food shopping, Big Brother's football practices (oh yeah, he's playing again) and games, everywhere.

My head is spinning..........

Laid Off, Pre-Cancerous Cells, and ADHD

So we've had a hell of a couple of weeks. First my husband lost his job. That was a huge blow, especially with this economy and three kids. All I did was cry for about a week. The day after he found out he was getting laid off, I found out that biopsies I had done on two moles on my back turned out a little scary. They said they showed pre-cancerous cells, so now I need to go in for two different surgeries to have skin removed around where the moles are-there goes my stress level. And a couple of days ago we finally took Dare Devil for his appointment with the neurologist to be tested for ADHD. The result? ADHD and a behavior disorder. He's evidently severe enough that they want to put him on medication now. Bill and I agreed before we even scheduled this appointment months ago that we weren't going to do medication so we need to seek alternative treatments.

The thing about DD having ADHD though is that everyone is reacting differently. It's upsetting news, you know. He'll be three in July and we're being told that he's severe. We've known for a while that something was "off" and that he needed to be tested and when I was finally pulling my hair out that was when I called the pediatrician and talked about it. Every where I read says you need a good support system, you need people who will understand what you are going through as parents of a child with ADHD and will give you a break every now and then. The reactions I got when I told everyone went from total silence as in they could care less to telling me that it's not ADHD, it's all in the way I parent and that if I spend more one on one time with him everything will change. I'd really like to hear from other parents out there who have an ADHD child because this is another one of those situations where you can't totally understand unless you're in the same boat.

As far as my husband being laid off, he's looking for work. He's highly qualified, has a degree in business management and so much experience under his belt it would make your head spin. So far all the interviews he's been on want to pay only a fraction of what he was making which unfortunately we can't get by on, of course we can't continue to get by on unemployment either. In the meantime, he's started his on consulting business. It's something he's always wanted to do. It's called Rev Up, llc. So if you know anyone needing a consulting service, please contact me, Lifeofawife@gmail.com. Otherwise, keep your fingers crossed for us that all works out with, well, work.

As far as the surgery goes. I'm scared, really scared. I'm scared they're going to take a lot of skin but not enough to get it all. It's on my back and I'm in a wedding two days later where I have to where a strapless dress. Say some prayers for me please.