In-Home Support
Since I decided to stop working I was able to be home with my son during the day. Because his immune system was compromised and we wanted to take every precaution when interacting with others, it was helpful to have services come to our home. This was a major stress relief as his diagnosis was still so raw and every day seemed like an emotional rollercoaster. I felt like I could “hold it together” for a little bit but if anyone asked me how I was doing, I would melt into a puddle of tears. So being in the privacy of my own home was comforting. We were fortunate to have a wide range of professionals work with my son (and at times be a very caring and compassionate ear for me).
Every child’s needs will be different and your needs as a family and in-home care will vary greatly. Speaking with your social worker is a great place to begin when inquiring about in-home care support services. The services for your family may be dependent on your health insurance and the availability of services in your area. Again, this is my family’s story and what worked well for us. I hope this gives you some insight into how we created a “new normal” and expanded our care team.
When we were released from the hospital after our 13-day inpatient stay during diagnosis it felt a bit like leaving the hospital with a newborn. Everything was surreal and we were nervous and anxious at the thought of this new normal. Here are some things that helped us when we got home.
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Prior to or leaving the hospital we were set up with the Visiting Nurses Association. This made me feel more confident as someone was going to be checking in on us from a medical standpoint. She also administered intramuscular chemotherapy as we were not allowed to give it to him.
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We also were sent home from the hospital with a treatment calendar, his meds, and our planned clinic visits. During the first month of his treatment, we were going to the clinic weekly for treatment and that was in a strange way comforting because I had become more comfortable in the medical community than “the real world.”
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I also joined two online private Facebook Groups which were immensely helpful (for my right side/analytical brain)
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My son was already enrolled in the Early Intervention (for speech) prior to diagnosis so we stayed on the roster for that, however, we decided to hold off on services for the first couple months or so of his treatment. He didn’t feel good and his body was working overtime to kill the cancer cells. When we started services back up we also were able to acquire a visiting nurse as well as art therapy (more on that later).
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We were lucky to quickly become involved in Pedi Pals. There may be some service in your area that is similar to this and if you're able to participate I HIGHLY recommend it! As a result of being apart of Pedi Pals my family and son gained the benefit of the following:
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Social Worker
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Massage therapist (My son LOVED when she would visit!)
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Visiting Nurse
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Music therapy
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Access to Child Life Specialist
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Extended family support network
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