What’s hospital life like?

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It’s been 45 days since we found out about the tumor.  We are well on our way to Samar’s road to recovery and we are experiencing the long drawn out and often unspoken days of our battle with cancer. These are the days that most people don’t talk about. People warned us this would be hard. People told us about the long road, the new normal, and the day to day battles. The good people were honest. They didn’t hold back and the truly experienced told us what we might expect.

The range of emotions compared to the first few weeks, have shifted from extreme drops of fear, sadness and anxiety to more of long drawn steep climbs. These climbs are either good or bad. They tend to happen during the tail end of chemo blocks, and sometimes during the week’s she is recovering from treatment. It’s not a quick left turn or a drop of sudden fear. It’s a slow unrelenting climb as you inch your way to the top. It’s that steady anxious build of emotion as you reach a goal, that could be a date on her treatment roadmap, a particular procedure or a specific metric you want from her blood count. All the while, watching your child change day by day.

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You begin to notice the small changes. The signs are subtle, as you still see your child bristling with positivity, energy and life. She makes friends with all the medical staff. But then you notice the bruising. She learns to help take vitals by offering her arm for blood pressure, but then you notice the strands of hair that you find on bed sheets or on the floor. Both you and her, become acquainted to the schedule and the mundane life at the hospital, heading to scheduled playtimes, pre-schooling or play dates with child life specialists, all the while she wears a mask to protect her weakened immune system. You change red diapers and become acquainted with a cocktail of medicines and drugs that are supposed to help with the overall changes happening to her body, from steroids to antibiotics, anti-fungal medicines, to blood transfusions. The small changes accumulate, and you suddenly realize she’s physically changed. Her fight and spirit are there, but her personality twists and turns based on how she’s coping with the treatment.

That’s the hardest part about all this. In order for her to live a normal life, we must kill the cancer with chemicals that also potentially kill all the good parts of her. Chemotherapy works to target and destroy highly active and regenerative cancer cells. But chemo doesn’t just target cancer cells, it attacks all regenerative cells, including and most importantly white blood cells. This weakens her immune system and makes her susceptible to sicknesses that could potentially kill her. In pediatric cancer, the illnesses accompanied by the weakened immune system are what do more damage. So any common cold has the potential to break our little girl, and put her in bed for weeks.

The red IV is known as Daunorubicin, also known as the red drug, often leaving red diapers or sometimes the patient in red sweats or tears.
The red IV is known as Daunorubicin, also known as the red drug, often leaving red diapers or sometimes the patient in red sweats or tears.

We’ve been trying our best to move forward through the difficult steps we’ve adjusted and transitioned to. Through it all Samar’s been her super strong sassy self. She’s learned her battle cry, “SamarStrongggggggg” and she’s learned to cope as best she can with the medical staff, the dressing changes, the daily medicines and the IV that shackles her to a 6 foot radius. She’s learned to wear her mask out, to protect her from any viruses or mold that may be in the air from construction next door. She knows that with every bath, there is a tedious step of covering her port with tape and plastic, so the dressing doesn’t get wet. She yearns to feel the sun on her face pointing outside the glass doors during our long walks in the hospital. She’s become accustomed to new faces as nurses and doctors rotate day to day and week to week. Slowly testing each one, till they win her trust. She may not know why she’s here, or remember any part of this experience, but she is being the strong persevering and resilient light, we all draw strength from.

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Is there light at the end of the tunnel? Definitely. Are we coping? Absolutely. Are we still fearful? A bit, but not as much. Time has given the ability to adjust our perception, focus on the day to day, and find strength in many of life’s smallest moments. The persistence and source of love and strength from family and friends keeps us afloat. It helps us bounce back from our bad days, and provides us the hope we need to be focused and strong for Samar. Thank you always. Thank you for continuing the prayers, the text messages, the meals and financial support some of you have given. We are ever grateful.

#StrengthInNumbers #SamarStrong #PrayForOurSamar

4 thoughts on “What’s hospital life like?

  1. We will continue praying for Samar, thank you for sharing your story with us. Samar is very lucky to have awesome & very loving parents !!!!!!

  2. Not only are you documenting Samar’s journey through this tough time but you are inspiring others. I can see this journey helping other families who are just beginning their journey to stay positive, to know they are not alone and to be able to have an idea of what they may possibly go through. We are always acclimating to some new situation and sometimes it feels like it will be an impossible task, but we somehow get through it. Continue staying positive as things are going in the right direction. Prayers and positive thoughts continually being sent your way.

  3. Praying that you will persevere through it all with great trust in God’s love and healing. Keep on writing and posting. You don’t know how many people you touch, inspire and give hope to.

  4. Keep the strength, your faith in our God. He Is in our midst. Tomorrow is always another day, you’ll get there one of these days when Samar will have these past her. Always in our prayers.

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