Tobias D.

Tobias is the youngest of seven children and has been such a beautiful gift in the lives of everyone he touches. He is a beautifully happy boy, he is extremely intelligent, boldly independent as he is defiant, and has a smile that will melt your heart.

At the beginning of September 2022, Tobias caught what we thought was a cold virus that was not common for him as he had always had a strong immune system and had been the healthiest of our children from birth to two years old.

By the end of the month we started noticing he was a lot more tired than normal and he had a lot more bruising on his legs than what we typically saw with an active toddler, and he began to look pale. He started refusing to eat and only wanted to nurse and be held all the time. When we brushed his teeth his gums would bleed.

On October 5, we took him to the doctor because he had worsened, he had become constipated and had not passed stools for a few days, he had a small abscess on his backside that seemed to appear overnight and he also had a small cut on a pinky toe that didn’t seem to be healing well. The doctor told us he had hand-foot-and-mouth which is why we thought he was not feeling well.

Tobias developed a 103-degree fever that would not break for days, he was restless and sleeping a lot. He had now begun complaining in his sleep and waking up constantly through the night as if he was in pain but couldn’t tell us where he had pain. He was also sweating while sleeping quite a lot. On Wednesday, October 12, after not being able to break the fever our pediatrician sent us to the hospital. 

When the first labs came back in the ER they were alarmed, they asked to redraw and when the second lab results only confirmed the initial ones they informed me that he was anemic, his hemoglobin, platelets, hematocrit, and white blood cells were devastatingly low, along with low sodium, low potassium, and elevated liver enzymes.

We were told he was critical and had to be admitted, one of the doctors came in and informed us that he had many strong markers and they believed he had leukemia. I was there alone (mom) with my baby and never in a million years would I ever think that I would hear those words, I could not breathe and it was as if the room was spinning around me. It all happened so fast, they ordered an insane amount of labs and cultures. He was given both blood and platelet transfusions and started on antibiotics and they worked to break his fever. Everything happened so fast, we received the first of the flow and bone marrow results that showed a flow of 12% leukemia cells, in order to receive a leukemia diagnosis there must be a 25% or more flow test or an increased flow test with a bone marrow confirmation. Under the microscope, the cells in the blood were not acting like typical leukemia cells so we waited for the bone marrow results, inconclusive. After 19 days in the hospital on October 31, Tobias was discharged with no conclusive answers because his follow up bone marrow biopsy contained no cells. 

Tobias was branded a medical mystery, although the doctors maintained their belief that it was the early stages of leukemia. His health improved significantly and he would be followed weekly by hematology/oncology for blood level checks. For almost three weeks he was doing amazing, but then he began to slowly decline and he fell and fractured an elbow. His appetite started to wane, he was sweating at night again and crying that he was in pain and he started to bruise again.

On Monday December 5, 2022 Tobias woke up and it was obvious something was not right. Later that evening he was vomiting, and also the next morning but we had an early appointment for his follow up so when I told the doctor he had been vomiting he checked him and after rushed to get the blood work. He came back to us with haste, and showed that his hemoglobin and neutrophils significantly dropped to dangerous levels and we need to get him in to have another bone marrow biopsy and have the hospital do more extensive blood work as soon as possible, he stressed that we could not wait. 

The following morning Wednesday, December 7, we went in to have the bone marrow biopsy procedure as an outpatient but shortly after they drew labs I received a phone call from the doctor that Tobias’ liver enzymes were alarming and he would have to be admitted after the procedure for more testing. The following day one of the doctors explained that he was 99% sure it was leukemia and that this time the hospital pathologist immediately found the cells under the microscope. On Friday, December 9, Tobias received the official diagnosis of B-ALL, “Acute Lymphoblastic Leukemia”. His bone marrow test revealed an 88% flow test of leukemia cells. That same morning he had his port inserted and began day one of a three year treatment plan. 

After completing the first phase of treatment Tobias still had cancer cells so he was moved up to *High Risk*, it has been a journey. There are good days and really bad days but we take one day at a time and try our best to keep his life as normal as possible. Tobias is so loving and courageous, he is our HERO and we are fighting with him until he beats this disease so that he can live an amazingly happy and healthy life!

Update September, 2024

Hi There! We are still around, life has been very hectic for me so I have not had much free time. Tobias is doing good, we have mostly good days and some not so good days here and there. We are currently mid Cycle 4 of Maintenance and are eagerly looking forward to the end of treatment, we are hopeful this will be the end of this chapter in our lives.

In June Tobias became really sick with non-stop vomiting and completely drained of energy, the doctors moved swiftly to get him into the hospital and run tests as we were actually scheduled that morning to go in for infusions. They checked all his levels and gave him antibiotics just in case, thankfully after hydration and meds he improved significantly and we were able to go home the next day. No results were found in any of the tests so the doctor believes it was a stomach virus. Tobias becomes so dehydrated so quickly it’s crazy.

Since then he’s been doing good thankfully. His neutrophils have remained around 1,000 so they have not been able to adjust his meds, typically they slowly increase but his body hasn’t been able to handle more than what he is on now. On Fridays he gets two doses of chemo and this does affect his appetite for 3-4 days and then it gets better for a day or two but then we start all over again. He still gets the extra fluids when receiving spinals and now more than ever tries to fight the sedation, they said this can happen when exposed to it as frequently as he has been.

His skin is still extremely sensitive and additional to the peeling on his feel and eczema on his face his skin gets really red, especially when in the heat so we have to be very careful. He does have sunken eyes which seems to be getting darker but the doctor said it’s all due to chemo. Overall though considering everything he has endured we cannot complain and are truly grateful for his progress.

His behaviors are improving, we started homeschooling and he is really interested in learning and absolutely loves anything that is hands on especially arts and crafts. He is such a smart little guy. We are really looking forward to the weather cooling to spend more time outside as he loves being out in nature and it is very grounding and healing for him too.

Update March 2025,

Hello everyone! It’s been so long since I’ve updated, life has been hectic but it’s important to share where we are today. It’s been six months since our last post, and we are days away from Tobias’s last dose of Chemotherapy.

The months have passed, and life has gone on, Tobias had his last lumbar puncture almost 90 days ago and it was very surreal. We’ve gone into the doctor’s office every month the receive his monthly infusions of pentamidine and immunoglobulin and he has maintained his level check appointments at every two weeks.

Tobias has grown so much, he is the size of a six-year-old and is weighing in at almost 60 lbs, his hair is long and beautiful, and I cannot bring myself to cut it after everything he’s been through. It’s not only a glimpse of his triumph but a window into how his body is healing. He is talking and learning more each day. We still have some emotional dis-regulation and occasional aggressive outbursts, but he is improving every day. We are working on getting him in to be evaluated with neuro psych. 

As we approach the end of treatment, I have realized that having almost lost him truly broke me, I have never been the same since that day. When I try to unlock the feelings that are cemented inside me, I literally feel like I cannot breathe, and my body cannot sustain the physical pain that floods me. I know it’s not healthy to hold that in, so I am trying to come to terms with it, truth is I just kept moving forward without allowing myself the grace to feel it. I’ve had to be strong, I had to lead my family in strength and unfortunately that can take a toll on someone’s emotional well-being, but I acknowledge I have a long way to go.

A few months after everything happened Tobias had a very spiritual experience that he recounted to me, it was not something I was prepared for as we are not religious although I do my my own personal beliefs and faith. When I am ready, I will share his story one day, I will tell you that I know in my heart without a shadow of a doubt that he was saved by something greater than what science can explain and his miraculous recovery is a testament to that. 

We took Tobias on a trip recently to the Orlando theme parks, it was his first real vacation, and he had the most AMAZING time! He even rode small rollercoasters; the little guy even interacted with Darth Vader and thought it was the coolest thing ever. Unfortunately, we did pick up some viruses while there, so we had to return home a day early and we were unable to participate in the Chasin a Dream Gala where he was going to share his story and be a runway model, but he has healed up great and is doing wonderful! 

We now begin to prepare for end of treatment, tomorrow we will attempt to receive the pentamidine via respiratory treatment in the hospital and if he can tolerate that he will be able to have his port removed sooner. In the event he does not tolerate it we will head straight over to the office to receive it there in addition to the immunoglobulin. Although he will end treatment, he will be receiving some immune protection for a few months until the doctors are good with where he is at. It can take anywhere from six months to two years for a persons body to heal after ending chemotherapy.

We are so happy for the end of treatment, but it is also very scary because there will no longer be any protection against bad cells. I am trying my best stay positive and have faith, the next two years are the highest risk of relapse so he will still be monitored monthly. We are just going to focus on getting his body as happy and strong as possible and remain in gratitude and faith for each day of health and happiness. We will be sharing his last day of meds in videos, so I’ll be sure to share that with you all!