Tag: #OneDayAtATime

What a Difference a Year Makes

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It’s incredible what a difference a year can make—actually, 384 days to be exact. For the first time since I was released from continuous care, Terry and I returned to the Bone Marrow Transplant office for my one-year check-up. This appointment was something I had eagerly anticipated a year ago, during a time when simply getting out of bed felt like an impossible feat. Back then, I struggled just to make it from the bed to the bathroom, let alone to the car to drive to the clinic. But, as the saying goes, time passes—and it certainly did.

This past year has been a rollercoaster, filled with health highs and lows. As I sit in the waiting room now, social-distanced six feet away from Terry, who’s wearing his mask, I am overwhelmed with gratitude. Gratitude that this year looks so much different than the last. Gratitude that after this appointment, I’ll be heading home to cuddle my babies and spend our first Christmas as a family of five, with Kanan now 17 months old.

However, along with all this thankfulness, there’s also a sense of sadness. My heart aches for those who are still in the midst of their journey, those who can’t spend the holidays with their families, or those feeling overwhelmed by their darkest days. I wish I could tell them, “This too shall pass,” and that hopelessness won’t always be the only feeling they experience. As hard as the road is, my message would be to keep fighting. But I also know how heavy that battle is, and how real and valid those feelings of despair are.

Looking back is difficult, but I’m so thankful for the future ahead. Terry and I are excited to experience Christmas through the eyes of our children. We’ll stay up late as a family, sipping hot cocoa and watching Christmas movies, putting gifts under the tree, and waking up to three excited little ones. These are the moments we once took for granted, thinking they’d always be there.

As for my health, I’m officially one year into remission—an incredible milestone we celebrated on December 5th, my “rebirthday.” It’s the best news I’ve received, not once but twice—from both my oncologist and BMT team. While this is an overwhelming highlight, we also discussed the ongoing exhaustion, nausea, and GI issues that may linger as long-term side effects of chemotherapy. Our conversation highlighted the importance of managing my health moving forward and how it will require ongoing care, much like someone who’s been a lifetime smoker or has diabetes after a transplant. Although I wish I could erase these lingering effects and permanent changes, I am deeply grateful for how much I’ve improved. I’ve transitioned back into full-time mom mode, and I even returned to work, clocking in 30 hours a week—something I’m proud of! So even with the setbacks, I’m counting all the wins.

I want to take a moment to thank everyone who has supported Terry and me this past year. To those who never received the thank-you cards I wrote, I’m truly sorry. The intentions were there, but have recently discovered a stack of unmailed cards in our kitchen drawer. But in all seriousness, we are so blessed to have a family and community that have rallied behind us, lifting us up when we had no strength left.

We couldn’t have made it through this year without our incredible family—our children, parents, siblings, and grandparents. When a loved one is diagnosed with cancer, it doesn’t just affect them; it touches everyone who loves them, often in ways they may never fully express. Our family showed up for us in ways we never expected, and our children, in particular, were the driving force that carried us through the toughest days.

Lastly, and most importantly, I want to thank my husband. The unsung hero in this journey. Terry never stopped supporting, loving, or pushing me—even on the days I didn’t want to get out of bed. He knew I was stronger than I believed and never let me doubt the future. It was never an “if” we would make it through, but a “when” and for that I will forever be thankful. 

As you’ve probably noticed, my blogging has slowed down a lot. It’s not that I don’t love sharing my story, but balancing work, motherhood, and exhaustion has made it harder to keep up. I do plan to continue sharing major medical updates, though probably less frequently—which, honestly, is a good sign!

Until next time, I’ll be here, living life #OneDayAtATime.

a little bit of normalcy

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Life is great. Let me repeat that sentence, our life is great. I recently had to rethink the way I thought about this current time in our lives. We were (still are) caught up in the day to day race that many families experience every day- getting the kids to school, after school activities, and therapy  while also trying to have a meal on the table and bedtime before midnight (joke, our kids go to bed WAY before midnight). We are exhausted and drained, but our life is great. We are healthy and our kids are thriving having both Mom and Dad home with them. One year ago, I would have done everything possible to be in my shoes today, to have the energy to take my kids to school and today I am able to. Do I still get exhausted after completing the morning routine and dropping off the kids at school? Yes. Do I have to sit down and rest more throughout the day? Yes. But I am present and back to my full time Mom job- which feels so right. 

This past summer was both one of the hardest and best summers of my life. I was able to spend time with Emery, Rowan, Kanan and Roxy that I wouldn’t have been able to if it wasn’t for my diagnosis. I was able to rebuild my relationship with Emery and Rowan and create a new one with Kanan. It’s crazy to think that before this summer, I truly wasn’t ever alone with all 3 kids by myself except for a small period of time. I was tested. My strength and stamina were tested. But my drive to have a great, unforgettable summer with my family, was stronger. And we had the best summer. 

In August, everyone started school for the first time in 3 years. This was a hard adjustment for everyone, but after a little over a month later, everyone has adapted. I have also recently returned to work, starting part time with the goal to return full time in the future. 

In regard to health, I’m doing “great.” I still have to be cautious of sickness around me (which is ironic with little kids), but I’m trying my best to distance myself when needed. My fatigue level is still higher than I would prefer, but I am reminded that it will take time. I still find myself getting sick some days, but according to the BMT team it may be due to long term effects on my GI track from the conditioning chemo, so I will continueto take the good days as they come. And there are SO many good days to be thankful for. 

So now what? We continue to live our lives as much as possible. I have an oncologist  appointment this week where I will have labs drawn and immunizations. Hopefully, it will be a smooth and easy appointment. Last time, I brought all 3 kids to the appointment so this time shall be “relaxing” compared to the last. We hope that things remain quiet the next few months. We will have more scans and workups when we approach 1 year in December. Until then, we will live life #onedayatatime and enjoy all the fall activities possible. 

“Fishing for a little bit of happiness”

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Ya’ll… I been waiting for some good news to share and TODAY seems like the perfect day… 

After 180 days post transplant, I FINALLY had good PET Scan Results. Some may even use the term, fantastic when describing them… and I plan to use that word all day, every day. 

In all seriousness, these are the results that we have been waiting for. Previously, there was a reason why I hadn’t posted for a while as I didn’t want to dwell on the bad. My first scans, that we did around Day 100 came back “improved” but still have spots that were lighting up. The spots were less than my liver, but the team was still concerned that they didn’t fully disappear after transplant. We never gave up hope, but the waiting period the last three months have been debilitating. I found myself having trouble sleeping and the constant thoughts of concern keeping me up at night. (Also, a 4 year old who has decided that he rather sleep on the floor than his own bed could also be a contributing factor). BUT we now can breathe some relief as the 6 months scan looked great, fantastic! 

In regards to my current life and health besides scan results … 

I have been trying my best to adapt to be a full time Mom again while balancing daily life and trying to stay healthy. The past few months have been everything I hoped for and more. I have been able to bond with Kanan and spend quality time with Emery and Rowan. (PS- Emery gave me a mother day writing prompt from school, and she loves me so much because I help her get dressed every morning. Who knew getting a 6 year old dressed would mean so much more than buying her ice cream lol 😂) 

With all the fun activities comes exhaustion. Exhaustion that I have never felt before. There will be times that I am playing with the kids or picking up a drive up grocery order and I will have to pause due to exhaustion. We are starting to see long term side effects of bone marrow transplant as I try to be more active every day. I have undergone additional lab testing in attempt to find the culprit. We have determine that I am currently in post menopause (lucky me) and that my thyroid is still not where they would like it to be. We have appointments with various  specialists in the next few months to help address ongoing issues, so hopefully their expertise will help us get a plan developed. 

I have started venturing out in public- sometimes even without a mask- which seems just weird to say out loud. I have been instructed to “be smart, stay safe” but also live my life. I have never been a better patient before today. 

AND…. The best, most unexpected news today that we haven’t even been able to tell family yet…. 

NIH called and my most recent NIPT results are NORMAL. Normal. Yes, normal. No abnormal results that would point to possible cancer.  Let me repeat, normal. Yes, they told me this could change at any time but today we celebrate and maybe break open a bottle of wine. (Remember, the instructions to live my life?) 

Some may ask what does this mean for us? It means that we continue to live our lives as much as possible. We know how short life can be and how nothing is guaranteed… even now, especially now. It means that we live more and love harder. We will celebrate every little small thing possible- even if it didn’t turn out how we planned. It means things that we plan to do in the far future, are better fit for today. Because shoot, after all these years I, no we, have finally learned what is a plan, if you aren’t ever able to live it out? A broken dream? A broken promise to yourself?

I plan to continue to take things easy right now. I am only 6 months out from my BMT and my body and soul are still recovering- physically, mentally and emotionally. But it does mean, I might even find some stillness in the chaos – and even find myself “fishing” for a little happiness. 

My Unborn Child Saved My Life.

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My unborn child saved my life. I never thought I would make such a strong statement, but it’s part of my story. It started back in April, Terry and I were so excited to have our anatomy scan for our little one. It was a different kind of excitement as we weren’t finding out the gender this time, but the excitement was still there. Within an hour that excitement turned into fear, pure fear. At the conclusion of the ultrasound, we learned of possible issues seen on the ultrasound including possible heart issues, enlarged kidneys, small size and a small nasal bone- all signs of Down Syndrome. The specialist OB, gave us our options and recommended either a NIPT test or amniocentesis to allow us to get more answers. 

24 hours later I was in the OB office having labs drawn for a NIPT test. For those who may not know, an NIPT test uses the mother’s blood to look for chromosome abnormalities with the baby. It also can determine the gender early, which is usually why many moms will proceed with the NiPT test. The wait period for the results was insane. After two weeks, I couldn’t stand the wait. I called almost every day to see if the results were completed but was told they are extremely behind and could take months..  Finally almost 4 weeks after I received the results, which came back inconclusive. Honestly, it was during that time that I was now worried that it was a more severe genetic issue and questioned whether our baby would make it to birth. Our emotions, especially mine, were all over the place. I was given the option to complete an amniocentesis for diagnosis, and after much thought we decided to move forward with the amniocentesis. 

Waiting was the worst part- we had already waited over a month for inconclusive results and my anxiety was at an all time high. It was a Friday night at 8pm, when I received a notification that some results were in. Terry and I had just put Emery and Rowan to bed and sat in our bed trying to decide if we wait for the genetic counselor to call on Monday or if we open it ourselves to look. We couldn’t wait, we had waited long enough.  To our surprise, the results said “normal” chromosomal makeup. We were overjoyed with happiness but waited for the official call from genetics on Monday for confirmation. 

After everything was confirmed, that we had a genetically healthy baby, the genetic counselor wanted to talk to us. She explained that there is a current study at National Institutes of Health (NIH) that was looking at possible correlation between abnormal ultrasounds, regular amniocentesis and possible maternal cancer.  Again, our feelings of happiness and relief went right back to fear in an instant. 

I decided to reach out to NIH not expecting to hear back, but in less than 3 hours I received a phone call. Within a few days, we had determined that I would come to their first available appointment in Washington DC as I was accepted into their study. 

Once we arrived at NIH, I had labs drawn including an NIPT that they could run out further than the normal. I met with an oncologist who told us that it was very unlikely that my Hodgkins Lymphoma would have returned 7 years after my first diagnosis.  After all labs were drawn, and imaging was completed we were to return for the results the same afternoon. I spent 2 hours in a full body MRI with a cage over me 7 months pregnant. It was so loud and the baby was going crazy during the whole thing. The girl before me was unable to complete and came out of the room crying and I remember giving my last glance at Terry like what the heck are we doing. The whole time I remember telling myself that it’s mind over matter- and somehow we made it thru the 2 hours of scans.

Afterwards I grabbed some much needed water after sweating those 2 hours and we headed back up to met with the oncologist. Within minutes he returned and you instantly felt a shift in his demeanor from earlier in the day. Terry knew immediately but I waited until I heard the words, “We think your lymphoma is back. We have found multiple spots”. We were heartbroken but not surprising we both held our composure .. at least until the bus ride back to the hotel. 

At the hotel we decided that we would not tell my parents the results until we made it home. We decided that best thing to do was act like nothing was wrong and enjoy our last 12 hours in DC.  Although it’s hard to enjoy yourself when literally every scenario is running thru your head. 

—- 

Once we arrived home from our short visit to NIH, we immediately began trying to find a new oncologist.  Due to insurance, I had been paying out of pocket for my yearly check in with my oncologist  but couldn’t use him if I indeed needed treatment. With help of those around us, we were able to get into KU shortly after returning home. We found it difficult to explain why we were seeking a biopsy due to the instruction of  NIH. Since I was pregnant, we were unable to do an excision biopsy but only a punch biopsy. To our surprise, the punch biopsy came back negative. We were instructed that we would move forward with the pregnancy and not induce early. We were so excited for about 36 hours until I received a call from NIH.  I took the call in the parking lot of work. They told me that they thought the results were a false negative and that it was indeed lymphoma.  We had two choices, push for another opinion or wait until after I gave birth and have more testing completed.  We decided that we were only a few weeks away from the arrival of our little one and I really wanted to enjoy a little bit of what was left of the pregnancy so we chose to wait. 

Terry and I only told a few people what NIH thought of the punch biopsy results. We decided that we would put it behind us and enjoy the last few weeks as a family of 4 without worry. It wasn’t until I was 4 weeks postpartum that Terry finally persuaded, pushed, “nicely threatened” me to reach out to KU for additional scans. Ok, threatened is a strong word, but I pushed back as I was enjoying the newborn stage and wasn’t ready for the possibilities ahead. After 5 days of him asking religiously, I finally reached out. When I first called, the doctor office told me that since I had just given birth I could wait another few weeks for follow up. They didn’t believe it was indeed cancer due to the length of time between my first diagnosis, so they really weren’t too worried for my scans. They told me that I could call back in another 4-6 weeks to schedule the scan. In that moment, I knew what I needed to do. I decided to push back and state that I wanted to start the process, knowing that was a damn good lie, but for myself and my family I knew we needed solid answers. To be honest, I wanted clean scans and put the last 5 months behind us.

So, we started the scans. We went thru weeks of scans- CT scans, MRI scans, PET scans. Some scans I was unable to hold the Emery, Rowan, or Kanan due to the amount of radiation in my body.  I would walk around Home Goods by myself until the kids went to bed so I wouldn’t be tempted to hold them. Each scan showed possible lymphoma and in more spots than the MRI in May. The writing was on the wall and  an excision biopsy was finally scheduled. On Friday afternoon the results were in, it was positive for Hodgkins Lymphoma. We were heartbroken, again. 

Since May, it has been a whirlwind. My emotions have never been so high and I probably cried more than ever before. I may blame it on my hormones of experiencing this all while pregnant and postpartum but I most likely would have had the same feelings either way. 

One thing I am thankful is my pregnancy. I’m not sure how long it would have taken to find the lymphoma without him. Without Kanan, I wouldn’t have ever done an NIPT test or be in contact with our genetic counselor. I am thankful for her as well. She was able to tell us about a study that many doctors were not aware of and provided us answers we didn’t know we needed.  I am also thankful that NIH continued to reach out to make sure I was following thru. They gave me confidence to fight for additional scans and ask questions even when it was uncomfortable. They made me feel that we weren’t fishing for a diagnosis- and that indeed everything pointed to lymphoma even though it wasn’t the expected. 

As my 100 day appointment post transplant comes later this week, I am reminded of all the feelings and emotions of this past year. It was the pregnancy and postpartum period that I imagined, but I am thankful for today. I am thankful for the support of everyone around us, who supported us every step of the way (even if it felt like we took multiple backwards steps, you were always there). We don’t know what this week will hold, but we are so thankful for the continuous love and support of our family and friends. #BattleForBecca #OneDayAtATime 

Necessary Change in Scenery

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Two weeks ago on Tuesday evening, we made an impromptu decision that Terry would move back home the next day. It was a difficult decision, as we weren’t planning on him moving home for another two weeks, but our kiddos needed their Daddy. Terry spent the evening packing up the majority of our stuff to go back home- including our bed- and started to move in the morning. During the move, we learned that there was a Covid exposure thus we had to quickly make a new plan. Terry would continue to move home with the kids, and my parents would move back to their house where I was going to continue to stay, but they would quarantine in their bedroom. For one week we all all stayed quarantined in our rooms, only to leave to go to the kitchen masked. My parents continued to test for Covid daily, with the expectation that they would leave if they tested positive. It was a hard week, but luckily we all made it thru without anyone testing positive for Covid. 

Unfortunately, Terry and the kids were not so lucky. The second night that Terry was at home, Kanan would not sleep without being held.  By Friday, he spiked a fever thus requiring Terry to take him into the pediatrician’s office. Due to Kanan’s kidney issues, each time Kanan spikes a low grade fever he has to be taken to either the pediatrician office or the Emergency Room to rule out UTIs and other kidney issues. After an hour and a half of workup, we learned that Kanan had Covid. What followed was a week of no sleep and survival while adjusting to solo parenting and returning to work for Terry. To be honest, I am SO appreciative and thankful for him. If it was myself in that position, I most likely would have cried after the first night. He has handled the last two weeks with such grace and patience- and I know how lucky are family is. 

So the great news is…. I FINALY WAS ABLE TO SEE EMERY AND ROWAN. Okay, I stood on the front step with a mask on and they stayed in the car but it meant so much. It had been 10 weeks, since I saw their smiles and heard their voices in person. The best part, was the majority of the time was spent with them holding up any item they could find in the car in attempt to impress me— and I was impressed with just how much those two could fit in the third row (and scared at the same time) ! 

Since Terry has gone back home, it has been an adjustment for everyone. I felt that I lost my best friend that would take 2+ hour drives with me every day, but the kids gained their Daddy back- which is most important. Terry is adjusting well, but I know that he wishes at time he had an extra set of hands. Picking up Rowan from preschool, making it home in time before Emery gets off the bus, and getting to therapy three times a week while trying to keep a 6 month old happy is a lot for two parents to handle in the evening, not just one.

Both Rowan and Emery know that I am at Nana’s and Papa’s house- which they have done very well at accepting they are not allowed to visit inside. One afternoon Terry had to pick up paperwork from the porch, which lead to Rowan being very confused why the doctor’s car wasn’t at Nana and Papa’s house with Mommy.  I guess he automatically assumed that a doctor would be staying with us too. The best part was, that Terry just rolled with it and said the doctor must be visiting other patients right now. 

We have been discussing with the team about the possibility of me seeing the kids prior to Day 100. We have discussed the importance of both physical and mental health of seeing the family and how we can achieve it. If everyone is healthy and remains healthy, I may be able to see them periodically when my counts are well. Even if it is just a drive-by, I won’t take any of the time with them for granted and maybe I will even find some things to “impress” them with.