Linsey and I were married on September 3rd, 2011. We couldn’t have asked for a more perfect day, or perfect wedding. We rode our high all the way to London and Ireland for our honeymoon. Everything was falling into place. We had no idea the type of roller-coaster we were in line to ride.
The first day back from our trip, Linsey surprised me with a positive pregnancy test. We never thought it would happen so quickly, but we were excited to start a new phase in our lives. We had fun spreading the news, but started to become concerned with Linsey’s health. Four days after the wedding she was diagnosed with pleurisy and her symptoms worsened throughout the fall. She had pressure and pain in her chest, couldn't lie flat to sleep and her cough was relentless. Any exploratory chest x-ray would expose the baby to radiation and we all tried to avoid that. She was initially treated with antibiotics and heartburn medications. However, as the the days passed and her symptoms worsened, we realized that something was really wrong. After Thanksgiving Linsey went to the doctor and the tests began.
Linsey's mass (9cm in diameter).
Just under 3 months after saying “I do”, we were shown a CT image of a mass in Linsey’s chest. She had Primary Mediastinal B-Cell Lymphoma, and it was aggressive. The mass was doubling in size every six weeks, and was already the size of a softball.
Our world turned upside down, as family rallied together and tried to find out what to do. Knowing that time was against us, and Linsey’s condition was worsening daily, we got on the phones and got second and third opinions, and tried our best to find out what we could. Dealing with cancer was one thing, but we found that there wasn’t much information about dealing with cancer during pregnancy. Our initial fear was that we would have to terminate the pregnancy. We met with a high risk OB doctor in Spokane, a perinatologist. Luckily, the timing was good. Literature and case studies showed that R-CHOP chemotherapy could be given with little to no side effects to our baby, as long as it was administered after the first trimester. Linsey was 12 weeks at diagnosis, and 14 weeks when we finally started her treatment.
Linsey's 3rd chemo treatment in January 2012
He was quick to tell us that we weren't the first to come up against this. He assured us that we had just as much chance to have a healthy baby as anyone else under normal circumstances. We were told we had a 1-3% chance of abnormalities or complications. After comparing that to normal pregnancies, amazingly it was the same. Be that as it may, it didn’t completely calm our worries, and the next 5 months were very tumultuous. I could tell that Linsey was constantly worrying about baby, and she struggled with her emotions. Linsey went through 6 rounds of chemo, and we just kept our nose to the grind, thinking positively. Linsey showed us all how brave she was, and we watched as the mass shrunk after each and every treatment.
Linsey had numerous doctors that worked hand in hand to make sure that every aspect of Linsey's treatment was safe for our baby. It was always a huge concern, and every decision regarding medications, imaging, or anything related was reviewed carefully.
On May 11, 2012 our baby Lena Kate was born. We all knew that on paper the pregnancy had gone as well as could be expected, but until meeting her, and seeing for ourselves that she was a happy baby, we wouldn’t sigh with relief. Those first weeks of parenthood were indescribable, and we were certain that our luck was turning around. Linsey got her first PET scan five days after Lena was born and it showed she was ready to proceed from chemo to radiation. It was expected that radiation was to be a security measure, to zap the last bit of active cancer that might still be present.
Lena, after surgery to install a PICC line.
To our dismay, at 2 weeks old Lena started having fevers and extremely painful stools. We spent quite a bit of time at doctors offices and were admitted into the hospital to run tests. Meanwhile, Linsey was still undergoing radiation treatment and dealing with significant fatigue. No one could figure out why Lena was having persistent issues. After spending weeks at Sacred Heart Children's Hospital in Spokane, we were finally able to put a diagnosis with the problem. Lena had Neutropenic Proctitis. More important though, was finding out why. Linsey’s chemotherapy targeted the B-cells that were cancerous. The drug eradicated all of Lena’s cells as well, and she was born immuno-deficient, or neutropenic. B-cells are white blood cells that our bodies use to fight off infections. We were assured this was not permanent, and it would correct itself in 4-6 months to a year. Nearly a month after we were admitted into the hospital, we were finally set free. We took Lena for frequent blood draws, administered shots and medications at home and were directed to keep her out of public to protect her from germs.
Lena's health gradually improved and we ventured into the exciting world of parenthood. On September 27th, we received a call from Lena’s doctor letting us know that her blood work showed her B-cell levels were in normal range. It was the happiest news we could have received, and it was a huge relief to know that our baby was healthy and we could be a normal family, far from hospitals. We're excited that Lena can now spend time with her cousins, family and friends. We spent too long keeping her safe at home, and we're loving the freedom to take her with us places. In this respect, we have a great appreciation for things we once took for granted.
The day after our 1st anniversary, Linsey got her first PET scan post-radiation. The results concerned her oncologist and she was referred to the Fred Hutchinson Research Center in Seattle regarding the potential for a bone marrow transplant. The Seattle doctor advised Linsey to get another PET scan immediately to confirm this course of treatment. As luck would have it, the October 5th scan shows that Linsey's mass has shrunk and dimmed in intensity. This was fantastic news, as a transplant may not be needed. Although Linsey's health will continue to be in question for the next year or so and she'll continue to be monitored closely, we're cautiously optimistic that she has won her battle with Lymphoma.
If we take anything from our experiences to date, it is that our daughter is our miracle. Lena has brought us so much joy and we feel truly blessed to have her in our lives. She was Linsey's strength throughout her treatment and has become the most important thing in both our lives.
