Entries from journal on chemo days.

Friday, October 23, 1987 

Day 15

Chemotherapy – Vincristine

Spinal tap – intrathecal chemotherapy – Methotrexate, Hydrocortisone, Cytosine Arabinoside (Ara-C)

Labs – CBC, CSF

Jason hasn’t lost his hair yet and I am avoiding talking to the other parents. I see the little children with bald heads, pale faces and dark circles under their eyes. They usually wear yellow flannel pajamas and they all look the same to me. Sick and maybe dying. Now my son is sick and maybe dying. He isn’t bald yet.

I remember their faces, the parents reaching out to me, trying to comfort me. But I was not ready. I turned the other way every time they approached me. I was afraid to look into the face of the little kids with no hair. Please don’t come and talk to me. I am not ready yet. If you talk to me then it’s real; my son really does have cancer and soon he will be bald.

And then it happened. One morning Jason’s hair started to loosen itself from his scalp. I would hold him and a pile of hair would cling to my sweater. For me it was very messy and upsetting. Instinct told me to take him downstairs to the salon in the hospital for a head shave. The baldness was instant, it was over quick and there was no mess. That was the last day I was afraid to face the head of a child with no hair.

Friday, October 30, 1987 

Day 22

Chemotherapy – Vincristine, Cyclophosphamide and high dose Cytosine Arabinoside (Ara-C)

Labs – CBC, urinalysis, chest X-ray

Bone marrow aspiration and results are clear – Jason is in Remission.

Hurray, big celebration and small sigh of relief. One could assume that the treatment worked, we could go home and the nightmare was over. But, it wasn’t I signed consent for the protocol POG 8704 and that meant at least 2 years of treatment.

Saturday, October 31, 1987

Day 23

Chemotherapy – continuous infusion of high dose Ara-C

Trick or treat in the hospital. All the kids dressed up in costumes and we toured the units as a group collecting little treats. For me it was the creepiest Halloween ever.

Sunday, November 1, 1987

Day 24

Chemotherapy – continuous infusion of high dose Ara-C

The unit Jason was on was the toddler unit for children aged 2 to 5 years old who had various pediatric illnesses. The unit had 7 semi private rooms 4 isolation rooms for a total of 18 beds on the unit. Outside the door of each room was a little white plaque with the room no and some space to write in the child’s last name. After the name was written a little colored dot was put beside the name. This would indicate the type of pediatric specialty the patient was admitted to.

Green dots were for children with cancer. This is how the other parents knew I was about to join their group. Jason’s name had a green dot beside it, the telltale sign he had cancer and the seasoned moms wanted to come and offer their support.

Our conversations generally started with “what type of cancer does your child have?” and we shared stories of diagnosis. Our vocabulary increased to include words like, fatal, terminal illness, poor prognosis, bone marrow taps, lumbar punctures, neutrophil count, sepsis, and cancer was oncology and we were pediatric oncology parents. Through a cell mutation with no DNA our children had some form of pediatric malignancy and we all belonged to a new world for which we had not signed up or prepared ourselves for.

Monday, November 2, 1987

Day 25

Chemotherapy – continuous infusion of high dose Ara-C

Child life playroom a lifesaver.

Tuesday, November 3, 1987

Day 26

Chemotherapy – continuous infusion of high dose Ara-C

The room on the nursing unit has become our home. A crib, a cot, a rocking chair, a cupboard, a suitcase for me with clothes and toiletries and a suitcase of toddler clothes and lots of toys from home to keep Jason occupied. And a tape recorder with Christian music that filled the room with songs like “Holy Ground.”

I was devoted to prayer and worship to God. I would pray for an army of angels to protect and guard Jason as chemotherapy was being infused in to his tiny body. I prayed the chemotherapy would kill the cancer but not destroy the child.

copyright Sheila Ethier 2014