The ‘Just in Time’ Birthday Party!

Dr. Sabitha Binu writes about holding a birthday party for a very special child in palliative care and the power of “hoping for the best even as we prepare for the worst”.

Dr Sabitha Binu, Pediatric Palliative Care Physician

I see him every morning in the paediatric ICU of the cancer hospital when the palliative care team does their rounds.

Most days he is sobbing quietly as his father holds him and the nurse attempts to draw blood, searching for a vein in the bruised blotchy skin of his arms and legs. His mother looks on anxiously. Sometimes his father gets angry with his son for pulling his arm away in anticipated pain. “This is for your own good,” he says. “We have to know if your counts are improving so that they can restart chemotherapy.”

The child, an eleven-year-old boy, has acute lymphoblastic leukaemia that has relapsed. He has febrile neutropenia and is in ICU receiving antibiotics, human granulocyte colony stimulating factor and acetaminophen for pain.

Our team had cared for him during a prior admission when he was in severe pain and required morphine for a brief period.

This time around he has only mild pain in his oral cavity secondary to a candida infection, that is being treated. His parents have been taught oral hygiene and care.

Every day blood is withdrawn from a fearful child, and every evening, the anxiously awaited result comes- no neutrophils. The oncologists say- “Let us wait and see tomorrow’s results. The counts should improve.” The cycle continues.

It is a nerve-wracking waiting game.

The family is emotionally and physically exhausted. Dad has left his job to help take care of his son. The child’s younger sister is being taken care of by relatives.

When we talk to his mother, she is hopeful that in a matter of time his counts will improve, and chemotherapy restarted. She has been advised about the possibility of a bone marrow transplant.

His father does not hope. He knows that this situation may not be redeemable. The oncology team have discussed the possible outcomes with him. If things go well, they would plan for a bone marrow transplant. He has not shared his thoughts with his wife because that would upset her and she would feel he is giving up on their son. Their expectations are vastly different.

When the palliative care team meets with the child’s oncologist, we learn that due tovarious factors-Graft vs Host disease, transplant related complications and post-transplant rejection, the bone marrow transplant has a 50% chance of success. The logistics are worse. Whole body irradiation facility does not exist in this hospital, the child will have to be transferred to another one and single donor platelet transfusions are very costly. The estimated cost is 3 lakhs.

Our counselor has a chat with the little boy. He hates the daily painful pokes. He feels sad but does not want to upset his parents by sharing his feelings. He would much rather go home and eat home cooked food. His sister is a pain in the neck but he misses her…sometimes.

Another counseling session with the parents. This time mum says she is scared. The future is so uncertain. We ask her the birth date of the little boy. She tells us December 12th. A month and a half away. She starts crying when she tells us his birth date. The unspoken thought in everyone’s mind is- ‘Will he be there to celebrate his 12th birthday?’  The mother wants reassurance. The team gently remind her that it is difficult to predict.  They discuss how fragile the child is and convey that time is limited.They talk about quality of life and what their son would want.

A useful phrase ‘let us hope for the best even as we prepare for the worst’ opens the conversation to understanding the parents’ hopes (against hope) of a cure and helps us reiterate that cure is what we too hope for. At the same time, we look at redefining hope to cover present reality. Hope for freedom from pain and from pokes. Hope for being to go home at last and enjoy mum’s cooking. Hope of celebrating his birthday. The tension between hope and preparation can be seen on mum and dad’s faces.

They would like their son to continue in the ICU and have his bloods monitored for the next week too to see if the counts improve. We put forth the idea that he could have an early birthday celebration. It would raise his spirits and would be an opportunity to celebrate him.

The parents agree. The child is happy to know that our team would like to give him an advance birthday party. His big wish for his birthday is a smart watch. He points out that the one I am wearing is basic and what he is dreaming off is one with a lot more features. We panic. The party is scheduled for the next day. A student observer offers to contribute her watch, bought just a few days ago. It is as smart as he wants it.

The counselor invites children from the leukemia wards to come to our palliative care room to celebrate a birthday. They are excited. Four of them land up two hours early and help us blow balloons and decorate the place. They find it hilarious when balloons burst in the process. One little girl approaches me and asks solemnly what I think the birthday boy would like. She is planning to ask her father to buy a present for him. We discuss options and finally decide on a chocolate bar. Her father hurries to the shop in the street in front of the hospital to get the gift.

Finally, everything is ready-cake and candles, snacks, and juice.

The little boy and his parents walk down to the palliative care room. The Happy Birthday song is playing in the background. Everyone sings their version of the song and claps as he cuts his cake. Both mum and dad feed him a small piece and then he, in turn, takes a small piece of his cake and places it in his mum and dad’s mouths. Cameras are going off everywhere as everyone tries to capture these precious moments. Even mum is quietly clicking away.

Then comes the piece de resistance-the smart watch. We cannot forget the look of absolute contentment that passed over the little boy’s face as he opened his present. He holds it gently and shows his mother all the features, one by one. She tries to feed him the snacks but he is full.

The next morning, in ICU, I see him sitting on the bed playing with his watch. He smiles at me.

A week later his parents make the decision to take their boy home. His counts have not improved. They are ready to take care of him at home. We discuss possible symptoms and complications that could develop in the next weeks. They are prepared. The counselor calls them up every day. Mum reports that he is doing alright.

Twelve days before his real birthday, the little boy passes away. He is at home and his parents are with him. They call up later to say that his death was peaceful.

The team grieves with them.

They will give them sometime and then, in a couple of weeks, make a visit to find out how they are doing.

As we process what has happened in our journey with this little boy and his parents, we are glad about many things we could do to support this family but most of all, we are happy that he was able to enjoy the ‘just in time’ birthday party, the memories of which his parents will cherish in the precious photos taken on that special day.

Dr Sabitha Binu

Pediatric Palliative Care Physician

India

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