Last week was absolutely amazing. We were given word that our Samar could go home if there were no complications with her last day of chemo. Anna and I were a bit surprised to hear the news, because we were told that she would most likely be in the hospital for the next six months. What changed? Samar’s resiliency has been extremely positive. Most days, she bounces back from the rough moments in a matter of hours. Honestly, I think she might have a little Wolverine in her.
Our primary pediatric oncologist gave us the green light to actually go home. Typically you have to live within a 30 minute radius of the hospital. If there is a fever or some type of medical emergency time is of the essence. Given how Samar has been doing, her doctor allowed us to be together at home.
This time at home does not mean she’s out of the woods. It’s a sign that she is doing well, but there is still a long road ahead. This simply means for the next two weeks, while she is recovering from the recent chemotherapy block, we have the opportunity to be together. We feel lucky and blessed that she is back with her brothers, living a new normal life at home. If things go as planned, and she doesn’t get a fever, we have a ten day reprieve from hospital life. After this time, we’ll head back to the hospital and go through the same preparations and procedures for the next block of chemotherapy.
There are two sides to every coin. My wife talked about hearing her footsteps and feeling joyful about Samar’s presence in our home. It’s been an absolute joy to see her assimilate to what life was like before cancer. She plays with her toys. She watches movies with her brothers. She claims her territory and her toys with adamant declaration. She holds her ground when she wants to. She is a constant reminder of the love and strength she carries, and the moments we should not take for granted. These are blessings I recognize and appreciate. These are the moments I draw strength from. These are the moments I appreciate.
But as much as having her home means all those things, it also brings a set of new challenges. There was definitely the sense of joy we felt once we heard the news of her homecoming, but then the sense of fear reared it’s ugly head. Trained professionals were caring for our daughter day to day, keeping to a set schedule of monitoring and medical supervision in a very sterile environment.
How the hell are we supposed to provide that same type of care at home? Try your best to keep your home as sterile as her hospital room. This is a big challenge considering we have two other little ones at home and one of them goes to daycare. We hired a maid service to do a deep cleaning, paying special attention to the bathrooms and her room specifically, so we could get them as clean as possible. We purchased a couple HEPA air filtering systems specifically for her room to make sure no mold, germs or allergens would get her sick. We’ve always instituted a no shoes in the house policy but we have to be even more diligent about washing hands once we get home, or do anything related to Samar’s care. We’ve also relegated to keeping our home a no visit zone. We are saying not to visitors, or keeping her out of activities or places that could potentially get her sick.
Living at home also means learning to take on medical practices at home, and becoming the best parental nurse you can become in such a short period of time. It means organizing her schedule of medicine and medical supplies. Creating a schedule and routine for the things you didn’t have to worry about at home, like changing her dressing for her port, giving her IV based medications, and hep locking lumens. These are tasks that we were taught a day before we left, taking lessons from the nurse practitioner on a dressing dummy.
We can’t exactly provide her all the care the hospital did, which means bi-weekly visits to the hospital, for blood draws and check-ups. We are on constant vigil taking in the signs and signals of low hemoglobin or platelets. Is she excessively tired? Does she look pale? Are there bruises that appear for no reason? The bi-weekly blood draws tend to tell us if she needs a blood or platelet transfusions, but most of all tell us if she is neutropenic ( or below the white blood cell count) that makes her susceptible to sicknesses or infections that normal healthy people never have to fear. In the process of taking her anywhere, she wears a filtered mask to protect her from molds, toxins and viruses that our normal bodies are able to fight.
Samar is on a regiment of preventive antibiotics and medicines that take help treat some of symptoms of the chemotherapy. The time it takes to care for Samar and her illness is taxing, the precautions can be painful and excruciating, especially when a two year old doesn’t comply. Simply taking a shower, means an extra 15 minutes, covering and preparing her port so it doesn’t get wet during the process. Preparing her meds every morning and every evening, means another hour of coaxing and incentivizing her to do what’s needed of her to stick to the plan.
Balancing all these things with two brothers who also have their specific needs can run you down. Sometimes I find myself yearning for the normal days before all this. I daydream and think about all the time we used to have when we just took care of three healthy kids. What I realize is that finding the patience and perseverance to handle these changes takes a solid partner and plenty of communication to make it through these new routines. Luckily, I have an amazing team mate who balances me and reads the things we need to do for each other to make it through a day.
Life will continually present you with a set of challenges. More often than not, when I see or talk to people who tell me, “I can’t imagine, what I’d do in your shoes…”
Well, you know what? You would know exactly what you would do in the situation. You would do everything in your power to make it work. You would do everything in your power, to guide, protect, and love your child through everything that comes. You will be the parent you never thought you could be and do the things you never thought you could ever do. All of it, for your child.