Harrison is such a light. He loves to laugh and smile, always wants to dance and sing along to his favorite songs. He is persistent and independent, and also loves to be a helper in whatever way he can. He loves hard, gives the best hugs, and is overall the best thing in our lives.
Harrison was diagnosed with ALL in January 2021. He had a fever, that only spiked at night time, for several days leading up to his diagnosis. We noticed a weird rash, what we now know was petechiae, on his ears, and he had some unexplained bruising on his legs. After a covid test, and being seen by a family doctor with no answers, we took him to the hospital where he was diagnosed.
Harrison undergoes very regular chemotherapy treatments, up to 5 days a week. We attend two different hospitals, one of which is an hour drive away. He gets lumbar punctures, bone marrow aspirations, IV chemotherapy, and oral chemotherapy, all as part of his continued treatment. This is obviously very difficult on our family in many ways, including emotionally, financially, and mentally.
Harrison’s diagnosis has changed our lives in so many ways. His father and I were both full-time university students at the time of diagnosis, as well as both working part-time. We have both stopped working for the time being, and have both reduced our course loads at school – myself dropping all of my classes, and his father dropping down to one course. We are focusing our attention completely on Harrison, ensuring that he is always surrounded by his loved ones during this period which must be so scary and confusing to his two-year-old mind.
Ben is a kind, mature, quiet eight-year-old boy. He loves to dance, build lego, read and play soccer. He is super smart. Being silly with friends makes him laugh.
He was diagnosed on April 9th, 2021 with Acute Lymphatic Leukemia after unexplained bruises and looking pale.
He is currently receiving chemotherapy and his treating hospital is an hour away. His diagnosis has changed the way we live.
Jane was diagnosed with ALL on December 9, 2018. She had been looking very pale, was asking to be carried a lot, and had a fall where her legs gave out from under her. We rushed to urgent care, then a local hospital emergency department, and were ultimately sent into Boston after review of Jane’s blood work.
It has been a long, hard couple of years of treatment. It’s hard to try to communicate what Jane and our family have been through. In terms of medical treatments and procedures, Jane has had surgery to insert her port, IV chemotherapy, oral chemotherapy, sedation, lumbar punctures with intrathecal chemotherapy (chemo injected into the spinal fluid), allergic reactions to chemo, fungal pneumonia, RSV, intubation, a week on a ventilator, re-learning to walk (twice), high-dose chemo inpatient hospital stays, influenza, and lots of emergency department visits.
We struggle with all she has been through, lots of feelings of helplessness and sadness, but also so much gratitude for strength and resilience and everyone that helped us step forward into each day until we arrived at the end of treatment.
Cancer changes a lot of things for families. At the time of diagnosis, I had just returned to work after maternity leave with our new baby boy Charlie. We were living with my parents, in the middle of building a house. It was such an incredibly challenging and heart-wrenching time, but dealing with watching your child fight cancer changes your perspective in many ways.
There is a quote I love: “My barn having burned down, I can now see the moon.” – Mizuta Masahide. Our family sees the moon more often these days.
At the beginning of February 2021, Harold seemed to have a lot of different discomforts. It was really hard to know what was up. He would say one day his stomach hurt, and his legs another day. Until he started to get a low-grade fever, so I decided to take him to the pediatrician, I thought it might be an ear infection (this was on Friday 5th) the doctor checked him and said he doesn’t have an infection, it was a bit red. So, he gave me a prescription for antibiotics so we were covered over the weekend if he complained more.
On Sunday, the low-grade fever was still there, so I told my husband that before getting the antibiotics, that we should take him to the Nicklaus urgent care, so they can check him (I didn’t want to give him antibiotics if it was necessary). They check him and said that his ears are fine, and his physical was fine as well. So they told us, he could be fighting a virus. We got sent home.
His fever disappeared for a couple of days, but he was less active and I could see something was up. On February 12th, the low-grade fever came back, and he was super low energy and complaining of different aches. We were at the beach, his favorite place, and was he sitting down and not really enjoying it. So we kept monitoring him,
On February 13th I told my husband something is not right and you have to take him to urgent care, and demand some bloodwork or for them to perform a virus test, something. So he took them, we spoke with the doctor on call that day and explained everything. I asked her to run some tests because we had not acted as himself. She did an X-ray of his neck because she had felt an enlarged lymph node, she knew that it wouldn’t show anything, but in urgent care, they have limited things they can do. Then she did bloodwork, and the came abnormal. She came back and told us an ambulance is coming to take us to the hospital and that and hematologist-oncologist on call is waiting for us.
We got to the hospital they did a lot of tests and on February 14th they confirmed that he had Acute Lymphoblastic Leukemia. He was admitted to the hospital and started treatment.
Harold has been a real champ, he has shown how strong he is. He has handled with maturity everything. He just turned 4 on July 20th. He has an army behind us supporting us, and we have to give him the support and love he needs to get thru this. We have good days and bad days, but we focus on the good. The side effects have been very gentle with him so far, we continue to pray that this continues. We focus on nourishing his body and mind, so he can have the strength he needs to get through this. His siblings have been part of the process, we try to have all family members help and teach them the things that their brother will go thru (in very simple words).
It’s been quite the change for all, but we are living day by day and counting our blessings. Everyone has good days and bad days, but we regroup and focus on our goal, keep everyone healthy. We try to dedicate time to Pia and Lucas, do things that make them feel special and love, we try to give them the attention they need (they are only 5 y/o). We have a team of doctors and practitioners that we trust and feel comfortable with. We decided to tackle this diagnosis in phases. We try to take it step by step. Living the present without thinking of what’s to come.
This diagnosis is truly a roller coaster ride, and even though there are some very rough patches, I feel a lot of good that has come with this experience. We appreciate the help from non-profits like yours that give us happy moments, those moments that boost our energy to keep fighting.
Mason was diagnosed with Leukemia in January of 2018. His symptoms started with him being lethargic but I chalked it up to him being a daddy’s boy and just wanting to lay around with dad. Then, I noticed his color was off and I mentioned it to my friend – he agreed. The next day, I was at work and my husband called to say Mason had a 106-degree fever. I told my husband to get him to the hospital immediately!
After a few hours, they transferred us to Miller Children’s Hospital where it was confirmed he had Leukemia. I think the hardest part was telling his sister. He was almost 3 when he was diagnosed in 2018. He had a few inpatient stays but for the most part, it was smooth sailing until the summer of 2020.
Mason had one of his kidneys removed at one so they’d been trying to make sure no damage was done to the remaining kidney. Well, he ended up getting a virus in that kidney that made it hard for them to continue chemo. They decided to try and save the kidney and stop chemotherapy. They felt confident in stopping it because most countries were now doing two years of treatment for boys as opposed to the usual three years. He had over two years completed.
He finished treatment early and we just hope he doesn’t relapse. So far so good. He’s a normal crazy 6-year-old boy running around non-stop. He’s pretty amazing!
Liam was in the ER with what was thought to be a viral illness. A month after being discharged he was back in the ER again with similar symptoms. This was suspicious enough that he was transferred to the children’s hospital to see the oncologist and then was correctly diagnosed with Leukemia on March 16th, 2020.
He has had lots of oral and IV chemotherapy, regular lumbar punctures, and occasional marrow biopsies. We of course have the financial struggles that come along with the treatment of cancer. Outside of that, the biggest struggles have just been trying to maintain stability and normalcy as we go through treatment and a pandemic. It’s hard on the kids!
Liam is so strong and so brave. Through this whole journey, he hasn’t slowed down. He has some bad days but they are nothing compared to all the great days he has.
