I was introduced to sweet and young energetic teenage boy by my colleague. The first spectacle itself I felt something extraordinary lightness in him. I came to know that he writes poem. He started writing verses almost as soon as he could hold a pen, but he never thought of it as a talent – just a fun way to think about his feelings. As soon as I asked him to present me a poem by showing the pen and notepad; he responds with a smile and cited few lines with no time:
“Give me hope to know that I can be tribute to the earth
Give me hope so I don’t too soon say goodbye…
I want to know that I am worth living for
I want to know: Why?”
It was an indelicate touching moment for me to know that he understood his own condition. He was admitted to the clinic with fever and tiredness which he was suffering with short intervals for about few months. He is soft spoken and unassuming as he talks about the earliest memories of his childhood. He is of great enthusiastic nature with lots of spirit within his. I am so glad that he is my next client.
A complete blood cell count (CBC), which checks for numbers of white cells, red blood cells, and platelets was done as the first step of diagnosis. It showed values higher than normal white blood count and lower than normal red blood cell and platelet counts. Since the blood count shows abnormality, as a next step he was exposed to do bone marrow aspiration and biopsy. It had brought anxiety in his parents, therefore a local anesthesia was given and the test was performed by inserting a needle into the bone, near the rear hipbone. There was brief pressure or pain. A small amount of marrow is withdrawn. A larger needle is then inserted into the same place and pushed down to the bone and rotated the needle to obtain a specimen for the biopsy. He had felt some pressure during this time. The sample is then taken to the lab to be analyzed. All the results are completed within a couple of days.
These couple of days was like the most horrible moments for his parents. Waiting is a trap because between the wish and the thing life lays waiting. They were much depressed during these short days about the awaiting results. I had taken it as a challenge to remove the negative thought patterns in there mind. I made them understand about the grand essentials of happiness which are: something to do, something to love, and something to hope for. Eventually, “hope is the physician of each misery” I quoted this Irish proverb to them. In spite of this situation I contend to proceed about the detailed history of their family status, socio-economic background, life-style, psychological and spiritual issues. Both the parents and he had cooperated well to put out things. The mode he had talked showed that he had an inner pertinacity within him to overcome the obstacles in life. I ascertained that he had an ingenious capacity to deal with the desolations.
His father is a clerical bank employee and mother is a homemaker. He has a sibling, younger sister who is of seven years old. He utilized most of his times by writing up poems and playing the videogames with his cute sister. He habitually goes on talking about the matter that had happened around him. I comprehended that he is not only a writer but also a good narrator. I love to expend the time with him by hearing all his stories. Once in such a moment he told out he doubts about the awaited results; moreover he concerned for his parents circumstance when they came to know about something bad news.
The dusk was about to fallen; meanwhile the results unveiled disclosing the malignancy. It was so intricate to open out the bad news to them. The goal of breaking bad news is in a way that facilitates acceptance and understanding and reducing the risks of destructive responses. The parents were informed about his condition by the physician. They feel numb or as if they have been hit over the head. Parents got confused being unable to hear, remember, or think clearly when the doctor explains their child's diagnosis or treatment plan. This numbness allows them to slowly get used to the painful feelings that tear through them. It gives parents time to slowly absorb and face these painful emotions and hard decisions.
Parents find it hard to eat or sleep at first. They do not have the energy they need for routine daily tasks or for facing all they need to do. Parents often report feeling overwhelmed by their child's diagnosis. Unfortunately, parents cannot be spared these painful and unpleasant feelings and will have them at times throughout their child's illness. I consoled them by saying that they can adjust to the changes in their lives, even with these painful feelings. They should work to find ways to maintain some quality of life for themselves, the rest of their family, and their sick child during this time.
Later after absorbing things in right manner, they said me that to not tell about the diagnosis/prognosis to him, because he might not cope out with it. Since they know him better than I do. It was an awkward moment. I felt that the family needs to know that we have understood their concerns of not wanting to cause anymore hurt to the patient. I felt self conscious, but I tried to console them and made them to understand that it’s better if he himself knows about the situation. I convinced them it is unwise to be untruthful as it may results in an inevitable breakdown in trust that lies within the relation. And as boy in teen, he could make out a more determined mind to face everything in life. At last, it was decided to break the news without showing any constrains. Before that it is warned that this is not a social or routine encounter. The response towards that menacing news was a deep silence.
He was diagnosed with acute lymphoblastic leukemia(ALL). He was 13 years old and had always been in great health, so it was quite a shock to all his family and friends. Advising the patient’s family with regard to prognosis is important since they may want to try to organize their affairs and plan for the time that is left.
I realized that he considered it as something disgraceful and I explained quietly about the meaning and the path of the prognosis in simple words. The stories of numerous were put forward who had overcome this barrier. I introduced everything clearly and patiently to him. I noticed a sudden change of expression in his face, the silence had broken out into shatter words and tears were rolling out continually. I tailored him with compassion and by acquiring empathy to bring back into normal state. Countering to his verbal and non-verbal clues was the most well-built part I had to do.
Since the bonemarrow aspiration confirms the leukemia, a spinal tap (lumbar puncture) should be performed, which uses a needle inserted into the spinal canal. It is most difficult technique as it causes pressure and pain. I had to reveal that a spinal tapping is needed to do. I pointed out the little complexes in the procedure in simple way, hearing this he started to burst by weeping out and refuses to do so. It was so inflexible to convince him about the essentiality of this test .Later the next day tapping was done. The bonemarrow cells were then subjected to Cytogenetics, flow cytometry, immune cytochemistry, and immunophenotyping methods and it was confirmed that he is having acute pre B-cell lymphoblastic leukemia(ALL).
X-ray of lung was taken to see if there is any lung infection. The x-ray didn’t shown swollen lymph nodes in the chest. The other imaging test such as MRI scan was done as it was very helpful in looking brain and spinal cord. Everything found to be normal. The treatment had to be started.I sat at the side of him and concussed about the each treatment phase he had to face on by taking lot of time. The treatment needs such as chemotherapy and blood transfusions are well discussed to him. In the intervening instant, I asked what he is feeling; is there anything concerning in his mind which he cannot be verbalized and I asked did he have any questions to deal with me at this point.
Within short whilst he opened out about his disquietness and distress. He feels sad when he realized he is now different from his peers. He felt depressed when he thought about the months of treatment he had to face and how it might interfere with his life. He thought about the changes in his body that will result from cancer and its treatment, and feel depressed about how he will look and how his friends may see them. He also feels hopeless, and is afraid that the treatment will not work. The main concerns were regarding:
Ø Having leukemia made him tired.
Ø The disease and treatment affected activities.
Ø Medication and treatment effects.
Ø Relationship changes
Ø Hair loss.
The themes that were concerning his mind made me understood that he was going through the criteria’s such as physical, psychological, social and spiritual domains. I felt that to overestimate these distressful questions regarding the various domains in his mind; he needs to be constructed with a healthy physio-socio-psycho-moral supports.
I met his parents and discussed the approach he needs. They ensured me that they will provide a setting as it was earlier in his life by providing all the means and needs. The absence of friends and relatives was he missing up what I understood from his narrations. I offered a way that he can meet his closed ones so that he can also share the feelings with them. I proposed them to meet him on all Sundays. I aware them not to show the grief expressions on there face when they meet them but in mean time talk about the old joyful things while they are with him. I encouraged family to be open with the child about what is happening.
I offered comfort and empathy to him. I allowed including him in all discussions with the parents and medical care team about diagnosis and treatment planning. Then I keep on encouraging him to ask questions .I helped him to address the feelings of anger and frustration whenever he had. I also encouraged him to share the news of diagnosis with friends and classmates, and stay in touch with them. I developed a plan with team members and teachers at school for keeping up with classes, as well as a plan to return to school and any restrictions that might apply. I make sure that there is some fun and pleasure in each day. I used humor to deal with his frustration.
My sight fondled upon his sister’s gloomy face. I tried to get the attention of her mind by saying some stories and asked why she is so unhappy. She said she is so concerned when she saw parents distressed and fearful about her brother. She may not be sure what cancer is but know it is bad. While his brother is in treatment, she often feels lonely, less valued, and jealous of the attention he is getting. She worries about going to school and facing questions she cannot answer about her sick brother. She is afraid her sibling will die. I listened carefully to her feelings and made her understood about the circumstances. I strengthened her mind by bringing hope and increasing the confidence to face the social.
I presented him a game player which he was crazy off so that he could spend his free time.. I always asked his sibling to be with him, as she is most close to him. I provided the spiritual support by increasing the faith and belief in life. By gauging the depth of despair, distress or anger he is feeling I suggested remedies to suppress it. I asked him to discuss his problems without any inhibitions. I supported all decisions of him and showed due concern for his interests.
He suffered from anemia and bleeding. I managed it by providing the means of transfusions in right time. Transfusions help treat anemia and reduce the risk of serious bleeding. He always has increased skin temperature and suffers from high fever. He is exposed to infections because he has lower numbers of the white blood cells needed to fight against pathogens. I used to note down his temperature placing the thermometer in mouth or under his armpit. I helped him to take medications on proper time. Careful inspection was done.
Unrelieved pain is another factor that he passed through his stage of treatment. He was given non-opoid analgesics and he experienced no pain. Assessing and evaluating his needs was the another thing I pointed to aim on. Small exercises were made to done to prevent pain and stiffness from contractures. I also applied cognitive method for controlling his pain such as keeping a radio by distracting his mind on music. Care was the next step to show holisticness.
General care
Nutrition
Since he is suffering from loss of appetite and weakness, appropriate care was provided to ensure adequate nutrition. I managed to ensure the intake of fluids and dietary fiber. Sometime the nasogastric feeding was done when he was unable to accept oral feeding.
Personal Hygiene
I treated him with utmost care during the treatment periods since he was suffering from oral and body sores. Oral hygiene was maintained by proper brushing using soft toothbrush and making him to rinse the mouth every 12hrs.Since the medications cause drying of mouth, the ice pieces and chewing gums were given to promote salivation.
Concentration of skin care is what I put more time off .I washed his body daily using a sponge bath, wash hair as often. I ensured the cleanliness of nails and mouth. I also provided him clean clothing and bed linen. Dealing with the pressure sores in skin, I encouraged the healing by proper antiseptic dressing, antibiotics, removing the exudates and necrotic tissue.
Treatment Phases
The typical treatment stages that was done to him for ALL:
v Induction therapy in order to achieve a first remission. Remission is when his blood counts return to normal and bone marrow samples show no sign of disease. Vincristine (Oncovin) was the drug used for induction chemotherapy. Central nervous system prophylaxis (preventive treatment), usually given along with induction therapy .CNS prophylaxis uses intrathecal chemotherapy, in which methotrexate drug was injected directly into the spinal fluid.
v Consolidation, an intensive therapy to prevent relapse after remission has been achieved. It is the second phase of chemotherapy lasts for about eight months. The goal of this was to reduce the number of disease cells left in the body. An anthracycline drug, such as daunorubicin (Cerubidine), used for reinduction followed by cyclophosphamide (Cytoxan, Neosar) 3 months after remission.
v Maintenance treatment; since he stays remission after induction and consolidation therapy, the maintenance therapy begins. The goal was to destroy any disease cells that remain so that the leukemia is completely gone. It uses weekly administration of methotrexate (usually in oral form) and daily doses of mercaptopurine. This treatment should be to be followed up for 2- 3 years.
The following is a short list about the treatment hat he has been through during the last couple of months:
¨ 2 red blood cell transfusions
¨ 28 days of high-dose prednisone
¨ 3 bone marrow biopsies
¨ 7 spinal taps
¨ 20+ chemotherapy infusions
The Common Side Effects he faced include the course of treatment includes:
· Nausea and vomiting.
· Diarrhea
· Hair loss
· Weight loss
· Mouth sores
· Depression
· Nausea
· Lost muscle tone in legs
It is an immense moment of renovation from fallen dusk into a new sunrise. His results came back clear, in the exact scientific words of his oncologist, “Everything looked cool.”He will continue to be followed closely, with checkups once a month for the first year. He and his parents thanked for the support ensured throughout the period of treatment. They were through it all, his courage and positive attitude have continued to amaze me. Of course there are days when he is just sick of being sick, but most of the time he is the sweet, happy kid he's always been. The weekly trips to the clinic were real down days for him at first, but now he looks forward to them because he has come to know and care so much about all the other children there, most of whom are much younger than he because this disease strikes most often in the 2- to 9-year-old age range.
He quoted few lines again on my notepad’s last page without asking me:
“A new beginning…
We should give each other.
A new beginning…
A new chance to share life
With our eyes wide opened.
A new beginning…
It’s time to start thinking about tomorrow.”
We should give each other.
A new beginning…
A new chance to share life
With our eyes wide opened.
A new beginning…
It’s time to start thinking about tomorrow.”
“Hope is faith holding out its hand in the dark” and I felt that I had provided a hand of light to him. I could not put in the picture how I felt when he gifted me those words showing the gratefulness. The air was alive with his humility and appreciation. It was a happy occasion. I am confident that he is now proficient of facing any state of affairs in life without any hesitation.