Archive for March, 2013

A Story of Motherhood and Survival – A mother talks about her fight and how her baby helped her..

March 31st, 2013 by Heather

Talking to my seven-year-old daughter about my cancer often gets people to laugh. She claims that she is the hero saying, “I saved my mommy’s life.” It couldn’t be more true. However, people just don’t believe it, but how could they? It’s not every day that a child saves an adult’s life. There’s a lot of truth to what she says because she was my bright spot when I had cancer. She was the thing that got me through, and that’s why people should believe that it’s possible for kids to help you through the roughest challenges.

My husband and I waited seven years to have a baby. We didn’t think about having kids until later because we wanted to be ready. I was finally ready to go for it. It was really strange to be pregnant but also a wonderful kind of strange. I got to eat some really silly things, and I had all kinds of questions about what I needed to do as a new mommy. I kept wondering what I was going to be like. I wanted to be a cool mom, but I eventually decided that I needed to just be a good mom to my little baby. The excitement in me was so unbelievable for this baby that when she finally arrived. I wasn’t expecting a difficult delivery.

Lily was a breech baby, so I had to have a C-section. It was so emotional but I got through it and held her in my arms for the first time. I knew then that I was going to be the best mom that I could possibly be for any baby. Just looking at her made me realize what I had been waiting to do all my life. At first, I couldn’t let go of her. She was so perfect. I felt immediately at peace with everything and just grateful. Pretty soon, things were going to take a new turn.

About three and a half months after her birth, I wasn’t feeling so hot. Every day I was exhausted, and I was losing tons of weight. We did some tests to see what was going on and three days before Thanksgiving, I was sitting in the doctor’s office with my husband Cameron to finally hear the results. It turned out that I had malignant pleural mesothelioma. It was shocking, and then the next thing shocked me again. I only had 15 months to live without aggressive treatment. I couldn’t speak. I couldn’t even begin to understand how this was happening to me after I had just went through the best experience of my life and had planned to spend an eternity making Lily’s life absolutely wonderful. It was just a horrible feeling. Thankfully my husband was there and helped to figure out the treatment options. I needed to have major surgery. I was going to lose one of my lungs.

I went in for an extrapleural pneumonectomy surgery on February 2, 2006. It was a long procedure that removed one of my lungs, part of my heart lining, chest lining and parts of diaphragm. I was in the hospital for 18 days and after another 2 months of recovery I began chemotherapy and radiation treatment. I had to make sacrifices during this time. I couldn’t always be around my husband or Lily. She was the bright spot for me. She was what kept me going through the dark times where I didn’t want to think about what was going on inside of my body. I’ll never forget how hard it was and how badly I wanted to be there for her as a mother.

When I think back to that time, the moments of overwhelming anxiety and pain, I realize how lucky I am. Mesothelioma is a deadly cancer that usually takes 95 percent of those diagnosed. Being a mother was the reason that I was able to keep going despite all the odds. My baby girl needed me for so many more years, and I wasn’t going to give up fighting. My husband Cameron was also there for me when the road was rough. He was the ultimate caregiver and a passionate husband who just never stopped being the rock that we needed to push through. My family and friends really helped throughout this time. People we didn’t even know offered a kind word and some sense of direction when it almost became too much to bear. I will never forget that kindness and thank all those who reached out to us. Still, my little girl was the thing that kept me pushing through the challenges. That was what helped me to be strong through all of the treatment. So when she tells people that she saved my life, I know exactly what shes talking about.

 

Baby Kyrans’ Story

March 31st, 2013 by Baby Kyran

On 11/24/2012 my son Kyran was born at 30 weeks. He was so precious to me and I was so relieved to see that he was doing so well and breathing on his own. He was born weighing 1lb 13oz and measuring almost 13 inches. The doctors told me that he was small for his gestational age, but when he was admitted to the NICU he was doing so well. Each day in the NICU was always positive news. He had no major problems, but on 12/19/2012 that all changed. We went up to the hospital to see him and the first thing I noticed was that he looked so bloated. The nurse informed me that they had held his feeding and he was awaiting an xray. We waited and after the doctor reviewed the xray, she notified us that he had a disease known as NEC. I had never even heard of this before. The doctor discussed with me the plan of action,and everything was put into place, but by that night she told me that he would not make it through the night.In just 8 hours his condition had progressed so fast that stopping it was almost impossible. My little angel had so many machines hooked up to him at this point, and he didnt even look like the baby I had given birth to. He made it through the first and second night and even had the surgery to relieve the pressure in the abdomen and drain out the excess infection, but on 12/21/2012 he passed away from complications from NEC. I was devestated, heartbroken, angry, everything you can pretty much imagine. Everything had looked so positive, all he had to do was gain weight. I wish that the doctors had informed me of the possibility of him getting this disease beforehand. After learning of the symptoms of the disease, I noticed that at some point or another he demonstrated atleast 3 of the symptoms, but I never would have thought it was more than a little vomiting and diarhea associated with being a normal newborn. I wish I had known more because it would have made me alot more cautious about his care. All along they knew it was a possibility and they never even mentioned it. Like other mothers sharing their stories I have some reservations about the level of care given to my son. The mother in me tells me that there is something else that could have been done. It breaks my heart everyday to think that this horrible disease took the life of my son, my precious little baby. I am torn as to whether or not I should ask for his medical records, because I also declined the autopsy. Everyday I think about my baby and what it would be like if he were still here. He is greatly missed and he is loved very very much.

Twins – Baby Lanes’ Survival Story and Baby Bennett’s Story.

March 31st, 2013 by Lindsay

On January 18th 2013 I went into labor with my twins…at 25 weeks. My twins suffered from twin to twin transfusion syndrome and I underwent laser surgery at 17 weeks to correct the problem. The procedure worked and my twins thrived afterward. The procedure did put me at risk pre term labor, but I never expected this. They started magnesium, but it didn’t even touch me and within a few hours my babies were delivered by emergency c-section. Lane Joshua weighed 1lb 5oz and Bennett James weighed 1lb 4oz.

Lane struggled with breathing and other issues the first few weeks. I was just looking at the notes I would write when talking with the NICU nurses. Next to Lane’s name I would have a paragraph of issues. Then there was Bennett, in every entry, doing great, no problems. He was our strong twin and smooth sailed through the first few weeks. On Saturday, Feb 10th I arrived at the hospital to find my usually very active Bennett very lethargic. Though he had a breathing tube , and I couldn’t hear his cries, I could see on his face he was crying. The nurse told me he had vomited some green stuff and they were stopping his breast milk feelings. They got an abdominal X-ray and started him on antibiotics. Bennett was sick, but he didn’t show the major signs of NEC. Our doctor did talk about the possibility that is what he had, but he did not believe it to be a serious case. There was no air in the abdomen, his vitals were good, could have been extubated if he wasn’t fighting an infection. No need for surgery at this point, they were going to watch him and see if the antibiotics took care of it.

On Friday, Feb 15th, Bennett had not shown signs of improvement and his belly was looking much more distended. Our Doctor recommended airlifting him to Minneapolis to be evaluated by a pediatric surgeon. Absolutely let’s do it. Let’s get this problem taken care of so I can have my baby back. My husband and I arrived to the hospital on Saturday morning. The surgeon spoke with us and explained that his team was split half and half on whether to take Bennett to the OR. He just wasn’t showing major signs of enough distress. There was still no air in the abdomen so they though he may have a small bowel obstruction or stricture. He did mention that worse case scenario would Bethany its NEC and there could be a large portion of dead bowel, “but I’m not expecting that”. On Saturday night they finally decided to do surgery.

When the surgeon and the neonatologist came in the room I knew it wasn’t good. The surgeon explained to us that Bennett’s entire small intestine was necrotic and needed to be removed. My husband and I are both in the medical field and knew what that meant. The mom in me though was waiting for them to tell me some miracle procedure they could perform to help my son. What’s next I asked? We recommend you withdraw support. It was the most awful words I have heard in my life. How does a parent do that? Early Sunday morning Bennett passed while he was laying on my chest. He was 4 weeks old. I’m angry I had to go through this. I’m angry I had to make the decision to remove support. I’m angry my son had a horrible case of NEC and did not present more symptoms. I’m angry that I no longer have my son and his identical twin no longer has his brother. It’s an awful thing and I wish I had more answers. What caused it, how long did he have it, what if they would have gone in earlier? I am glad I found this website though, and sympathize with other parents who have had similar experiences.