A typical family
If you had to measure the statistics of our family against that of others in America we are solidly average. We had 2 healthy children, a dog (Rocky the pug), a medium sized house on a medium sized plot in your average middle America town. We have typical jobs and make average money. We aren’t rich and we aren’t poor. We have great families who came from working class backgrounds and a smallish but core group of great friends. We basically are the definition of middle class. In hindsight we realize how easy it is to get safe and complacent and not believe that things can happen to you.
Then they do. And when they do it is often tough to be prepared. It is easy to complain about little things in life that when you look back were so trivial.
A shock to our family's core
Naaman was born on February 28th, 2017. He was a healthy baby boy with a full head of hair, a big head, big hands and feet. For the first year of his life there was nothing very eventful other than having several colds of varying severity in the Winter of 2017. But that is Winter and Winter in Connecticut can be brutally long.
Towards the end of 2017 he had several ear infections and eventually needed to have tubes put in in April of 2017. At this point everything was normal. The tube surgery was successful and while he did have several colds, even into the late Spring nothing was glaring.
Some odd signs
In early July we had a trip planned to visit Philadelphia for the first time. For a couple weeks leading up to the trip we noticed Naaman had several bruises which when we mentioned to anyone were just equated to him being a “little boy”. We did notice however that the bruises were accumulating.
Our trip to Philadelphia was great and we arrived back in Connecticut. We noticed that not only did the bruises not disappear or fade as they normally would but Naaman was getting them by almost touching objects. Then we noticed that the bruises started to feel like hard lumps. Time to go to the doctor once again.
Our pediatrician took blood tests because the symptoms were definitely not normal. The doctor got the blood test results back the next day who informed Nicole that the signs were pointing to Leukemia after seeing high white blood cell counts. That’s when I got the worst phone call at work to meet them at the emergency room at Yale. Thus began a very long night with a baby who could not eat or drink for tests and endless amounts of doctors and other staff with grim looks on their faces. We found out later that his white blood cell count was 750,000, one of the highest they’d seen.
After this night we were in the hospital for nearly 2 weeks with the first days in the PICU. Here Naaman received the cleaning of his blood to get his white cell counts down lower and his first treatments all within the first couple days. This was a critical period to getting him into the first rounds of chemotherapy. He needed to be stabilized first and it was quite scary.
The next steps
After being in the PICU for a week we were transferred to the pediatric oncology wing where he would undergo chemotherapy and we would learn of the long journey ahead. This journey lasted nearly 3 years in total with the most intense treatments being the first 6-7 months. Little did we know that a lack of intense treatments does not mean less risk as we would find out in the Spring of 2019.
After completing the first phase (induction) in August 2018 we completed the second phase (consolidation) at home, which lasted around 56 days. After Naaman’s final bone marrow evaluation the two tests came back with 0 and .34% of the Leukemia cells in the marrow. Yeah! He did so well. We did learn however that Naaman tested positive for a rare mutation called Ph-like ALL which required him being a part of a clinical trial as the group is very small and treatments are still unknown.
Only 10 months away from his treatment being over, on February 11, 2021 Naaman went in for his LP (lumbar puncture) to test his spinal fluid for Leukemia. To our horror on February 12 we learned that Naaman’s cancer had returned, he had relapsed. This is something I had personally feared after his treatment was going to be complete in November, 2021 when testing would be more sporadic but we did not expect it this early.
We decided to immediately begin treatment that Friday to give Naaman the best chance to fight this Leukemia once again. Saturday Naaman was given Mixtoxantrone, a strong chemotherapy drug, known as the smurf drug, due to it’s blue color which you are given and in which color it turns your urine. We would know the side effects of this powerful drug until days later.
After this drug, and many others ravaged Naaman’s body, it sapped his strength, took away his hair and appetite, and gave him leg pain, sores, body pain, constant diarrhea, fevers and caused quite a few scares. We rotated in the hospital amongst Covid restrictions over 6+ weeks to try to nurse him back to health and let his body once again take over the healing process on its own.
Where we go from here
Naaman will continue on a new cycle of plans for the near future, albeit shortened from his original plan. The good news is that he is outside an 18-month window, which offers the best shot at recovery with less complications. We know now that this will be a very bumpy road ahead but we will be strong together.
We continue to be positive and do our best to maintain a healthy happy environment for our little Cheeky.
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About Naaman's Leukemia
This hopefully will clarify both the type of Leukemia that Naaman has as well as shed some light into the treatment that he will undergo.
Naaman was diagnosed with Pre-B ALL. The ALL stands for Acute lymphocytic (lymphoblastic) leukemia. The B is the type of cell that it affects. There are B and T cells. Pre-B refers to the maturity of the Leukemia cells.
In August he was diagnosed with a much rarer mutation called Ph-like ALL which is a high risk subtype of the standard B-ALL. It occurs in roughly 10% of those that already have B-ALL.
With Pre-B ALL survival rates have risen to 90%+. The affects of the Ph-Like ALL in regards to the overall prognosis are unknown but they generally without treatment have higher cancer recurrence rates.
Naaman will be undergoing various levels of treatment over the phases. His state and reactions will differ based on the time. In some cases he will be very tired, irritable, unable to walk, weak, hungry or sick. In other cases he will appear to be his normal jovial self.
During the entire process however we expect his white blood cell counts to be low. This leaves him at great risk for illness as he will be susceptible to viruses and bacteria.
That said, we will not be bringing him to obvious places where there is a risk of illness. He can however go to open areas, areas outdoors and can be in contact with healthy people.
It’s around 6-7 months of intense therapy followed by 2 years of lesser intense maintenance so around 3 years total. Naaman was scheduled prior to his relapse to be completed in November of 2021.
The treatment is broken into phases with each phase designed to irradiate the Leukemia differently to eliminate any microscopic traces of it.
Well there are many changes but most important are that we are really trying to eliminate as many bad germs as possible. This comes through taking shoes off and washing hands frequently, especially when being away from the house.
We are also cognizant of if we feel ill. We to be quite honest are a bit afraid of the Winter months and the sickness it typically brings.
We have to also monitor fevers quite often and look for signs. Small fevers require trips to the ER instead of the family physician.
This is going to be a long journey and we do realize that we will need much help along the way.
Our family and friends rallied from the beginning surpassing our wildest expectations by giving needed supplies, food and donating time.
Over the long haul support will still be needed as we shift to a one income house and have to meet the expenses of not just healthcare but day to day needs. In addition to the support we already have received a GoFundMe was created in Naaman’s honor to help fund the expenses. We continue to appreciate all the support.
- ALL (Acute Lymphoblastic Leukemia) – A type of leukemia, or cancer of the blood and blood-forming tissue, where many abnormal lymphocytes (a type of white blood cell) are produced by the body.
- Anemia – A condition in which the body has a low number of red blood cells
- Bone Marrow – A thick, spongy liquid inside the bones. Bone marrow makes all kinds of blood cells: red blood cells that carry oxygen, white blood cells that fight infections, and platelets that help blood clot.
- CBC (Complete Blood Count) – A common blood test that evaluates the three major types of cells in the blood: red blood cells, white blood cells, and platelets.
- Leukemia – cancer of the white blood cells, which are also referred to as leukocytes or WBCs.
- Platelets – Tiny cells in the blood that help blood clot.
- Port – A medical device inserted under the skin and attached to a vein that allows medications, blood products, and nutrients to be given intravenously. A port eliminates the need for repeated needle sticks to start an IV line or draw blood.
- Spinal tap/lumbar puncture – A procedure in which a small amount of fluid surrounding the brain and spinal cord (the cerebrospinal fluid) is removed and examined.
- Stem cells – primitive (early) cells found primarily in the bone marrow that are capable of developing into the three types of mature blood cells present in blood: red blood cells, white blood cells, and platelets.
- White blood cells – These cells, part of the germ-fighting immune system, attack invaders such as viruses and bacteria. Each type of WBC — including neutrophils, eosinophils, basophils, monocytes, and lymphocytes — has its own role in fighting different kinds of germs.
Something to share?
We appreciate all the love and support, hearing from those who have been in similar circumstances or those who just want to reach out and say hi.
We have learned...
In the short time with Naaman’s battle with Leukemia we have learned several important points that hopefully will help others going through the same situation. Have advice you’d like to share? Contact Us
Ask for help
Let me start by saying we as a family normally hate asking for help. It may be a mix like we are bothering people . With Leukemia you need help and we learned this very quickly and we were shocked at just how much everyone truly wanted to help. Lean on family, friends and if both aren’t available groups nearby.
Use online research sparingly
The internet is a wonderful thing. We found it more helpful to research the names of treatment types, drugs and procedures. While it can be good to gain a general understanding of Leukemia types, many sources can lead to misinformation and to unsettled nerves during a critical time. Research with caution.
Make a journal
When we dispersed the news we were slammed with lots of emails and texts asking what was happening. We first started with CaringBridge, a free online journal per recommendation from the hospital. It is an easy way to tie in family and friends and give updates to everyone at once. A website like this one is also an option.
Pack ready bags
When Naaman had a temperature shortly after coming home we ended up with a 2 week long stay back at the hospital. While eventually we gathered what we needed, in hindsight it is good to have a well stocked prepared bag ready for an overnight stay readily accessible.
Look for resources
At Yale New Haven Hospital there were great staff including social workers, pediatric support team and nutritionists. Lean on them all to help give you a break, to ask for advice and to find way to get free money, coupons, room and board and other things that may be vital.
Get some you time
Yes, the goal is to cure your loved one but you can’t if you are incapacitated. We learned to ask for help to watch Naaman (and Nadine) while we took short breaks or grabbed lunch. Being in a hospital setting or even home without a break can be mentally draining. Do all in your power to stay well.
Feel the urge to help?
We are overwhelmed and appreciative of all the help everyone has given, not just monetarily but also of their time. The GoFundMe account listed below was set up by family to assist with our needs during this time.