Acute Lymphoblastic Leukemia (ALL)

This post is the story of how this all began. I hope it helps others recognize symptoms of a leukemia. I hope it helps others navigate the same possible diagnosis. Never did we imagine Robbie’s symptoms would end up being a form

of cancer.

2023 - 2024 was rough for us to say the least. Looking back now it’s hard not to believe that stress didn’t play a part in Robbie’s sudden decline in health.

I could give an endless list of reasons why life was hard during the last few years but I think most could agree that life in general can just be difficult. Being in a relationship for over 15 years is hard to maintain, being married is hard, staying healthy is hard, being a parent is hard, being a home owner is hard, maintaining a job is hard, maintaining good mental health is hard. Being a human and just living can be difficult to navigate.

Balancing mental and physical health can be difficult, work life had become stressful for both of us, & having 2 children takes time to adjust to.

Robbie had been expressing he wasn’t feeling well for months. Fatigue, aches, & pains mostly, which we assumed was just us getting older and being parents to 2 beautiful wild little kids who don’t allow us to sleep much. He also began to excessively sweat at night only. He often would wake up and need to change his shirt or take the one he was wearing off because they would be soaked. Robbie began to tell me he would become short of breath walking one flight of stairs at work which is very abnormal for him. One day while visiting with family Robbie felt like he was possibly having an asthma attack after playing soccer with his niece. He later confessed that he actually felt like he was going to faint that day, we realized after his diagnosis this was due to the lack of oxygen in his blood. Robbie would come home daily the few weeks leading up to his hospitalization and tell me another coworker told him he looked pale. He didn’t think much of that observation as he’s been called pale most of his life.

The Saturday before he ended up at the ER we had been up late watching TV and Robbie‘s right eye abruptly developed a dark black spot that obstructed his vision. We called the ophthalmology department for our medical group Monday morning and after speaking with a nurse about his symptoms they worked him in Wednesday. Robbie’s vision became worse over the next few days but he pushed through, going to work & we went bowling. Robbie’s fatigue and aches became severely worse after we bowled. He also experienced random bleeding which we now know was also a symptom. His gums had been randomly bleeding, small cuts would bleed excessively, and one of his toenails randomly began to bleed abruptly without injuring it. Wednesday came and the first thing the optometrist told Robbie was that he looked pale. After testing his eyes the provider informed Robbie he had retinal hemorrhaging in both eyes and that the dark spot was a collection of blood directly in front of his pupil. Basically, Robbie’s eyes were bleeding internally so the optometrist ordered labs that day. Robbie completed the labs Thursday morning. Throughout this week Robbie was constantly sleeping. His fatigue was extreme he could barely stay awake. Friday morning my mother came to pick up our daughter for a movie date and called me frantically telling me something was wrong with Robbie and I needed to take him to the ER as soon as possible. She told me Robbie did not look well and had no color, she said his lips were white and she was concerned for him. I called Robbie & he insisted he was fine, I came home from work that evening and suggested we go to the ER, but Robbie again insisted he was fine. At 3am Robbie woke up to back to back phone calls which turned out to be a provider calling to inform him about his lab results. The provider told Robbie his hemoglobin level was at a 4 and he needed to go to the ER immediately in order to have a blood transfusion. He further explained normal

Hemoglobin levels for a man his age are between 13-17 and blood transfusions are recommended at level 7. Robbie, still being stubborn, asked what would happen if he didn’t go… the provider told him he would not be alive much longer if he didn’t go immediately.

So he woke me up and finally agreed to go to the ER.

We went to our local ER arriving around 4am. We waited several hours to be taken back and every person we encountered told Robbie he was “white as a ghost”. The provider working, suggested Robbie could be anemic or possibly have a stomach ulcer based on his personal history. They drew blood, and after several more hours, the provider finally returned and informed us based on the results they had an oncologist review his labs who determined Robbie most likely had leukemia. They could not diagnose without a bone marrow biopsy, which they wouldn’t be able to perform until Monday. They also could not treat Robbie because they did not have the proper specialist or facilities at this hospital.

We sat in disbelief and began to call family members and friends as we thought unfortunately, Robbie would not be around much longer based on his current condition.

The hospital we were at tried to do an ER to ER transfer starting with another local hospital that had the facilities and specialist needed, but everywhere they called would not accept the ER transfer. It was a Saturday, it was 104° outside, and all of them were overflowing and unwilling to accept another patient. The provider left us again after telling us that they were looking at a hospital in San Diego and could move on as far as San Francisco or further until they found somewhere that would accept him. After many frantic calls to family and friends and many frantic Google searches Robbie made the decision to leave this hospital and start over at the next closest one we knew had the facilities to treat him. He had not received blood since we arrived at 4 AM and we left the hospital at 5 PM. As we were pulling around the corner, the nurse who was caring for Robbie at the time called me to let me know Robbie had left his phone, the blood they had ordered had finally arrived, and asked me to please come back and return to the room we previously had so he could perform the transfusion before we leave again to start over at the new hospital. We screeched back into the parking lot and ran through the ER straight back to the room we had been in previously where the nurse was waiting with blood in hand. Once we sat down and Robbie was being hooked up for his blood transfusion my head began to pound, and I became sick to my stomach just from the extreme stress I had endured that entire day. Robbie received the blood transfusion he needed. He immediately gained color back in his face and began acting like his normal self, we even joked and laughed about how chaotic the day had been. Once the two packets of blood and platelets were done we finally walked out of the hospital ER at midnight. We had been in the ER almost 24 hours straight at this point.

Because Robbie had received the blood transfusion that bought us a little bit of time. We decided to go home and pack our bags before we ventured out to start the process at the new ER all over again. I collapsed on the bed from exhaustion while Robbie stayed up most of the night packing and discussing everything that had happened with his sister. The next day we finished packing our bags, had breakfast with our family, and said goodbye to the kids. This was the most difficult part as we did not know if this could possibly be the last time Robbie would be seeing them or how long he would be in the hospital.

We arrived at the second ER at noon on Sunday and it was surprisingly pretty empty. Robbie still in shock asked me to speak for him at the ER so I explained everything that had happened the previous day to the triage nurse, and I feel as though the process of getting him admitted happened very quickly. He was admitted that same day and spent 25 days in the oncology unit on the sixth floor of the hospital.

Now here we are two weeks post discharge from his hospital stay. Post 9 rounds of chemo and Robbie is doing really well. Other than some partial hair loss on his head and beard He responded very well to his chemo treatment. Our daughter likes to refer to him as Mr. potato dad with his new shaved head, Robbie prefers to reference to himself as Dr. Evil from Austin Powers, and I enjoy calling him Robert Edward Cullen because the nurses would refer to him as a vampire while he received his many blood transfusions.

As of today, Robbie has no cancer cells in his blood, but he will complete his first bone marrow biopsy since receiving chemo tomorrow. We are hoping and praying it will show no cancer cells, but regardless he will require a bone marrow transplant. He will also start a round of treatment shown to be very effective treating leukemia called “Blincyto”. Blincyto is an immunotherapy that helps fight acute lymphoblastic leukemia (ALL). It is different from chemotherapy as it works with your immune system to find and destroy cancer cells. Robbie’s provider is about his age and would like to go with treatment via Blyncito due to less long-term side effects compared to chemotherapy.

Robbie‘s siblings will be tested to confirm if they are a match for his bone marrow transplant first. I will provide a link to a company that you can submit a mouth swab to in case you would like to test and confirm if you are a match as well. If his siblings are confirmed not to be a match, we will be reaching out to see if anyone else would consider donating marrow for his transplant.

https://bethematch.org/become-a-donor/

If you would like to visit with Robbie while he’s home, please feel free to reach out to us via phone or direct message on Facebook. He is doing really well right now. His labs are all normal and his immune system is not currently compromised. When I have the energy I’ve been trying to cook. I feel a lot of pressure and anxiety about making sure Robbie is eating the proper types of food to keep him healthy. I find myself sometimes forgetting to eat the entire day until it’s time for bed and I realize I haven’t had anything but water if that for the day. So much is going on It’s hard to focus on yourself when things like this happen to those that you love. If anyone would like to share your favorite recipes with me I would very much appreciate it as I am running out of ideas.

Thank you everyone who has reached out, said a prayer, sent us positive vibes, donated, showed up for the blood drive, and literally everything. I wish I could list all of the things that everyone has done for us even just letting us know that you care and you’re thinking about us.

Thank you to everyone who has reached out and told me positive things about the blog. My

Cousin Danielle created this for me in hopes to help as an outlet to document what we’ve been through. I hope to keep this up as much as I’m mentally and physically able to. Documenting this process harder as time goes on. I’ve been encouraged to write down what we’ve been experiencing… even though it is difficult I at least get a few moments of feeling like I can breathe until the pressure comes back on again. Hopefully one day we will get to look back on these blogs with our kids when they’re older and tell them the story of their dad’s battle with Leukemia.