With the sand quickly running out from the hourglass of her life, every remaining moment with her family is precious. So when Alesha’s birthday appeared on the horizon, all of us at Rachel House knew we had to seize the moment and celebrate the gift of these precious lucid hours she had left.
The appointed day
Today is that specially appointed day of celebration for Alesha. After an initial brief moment of hesitation, Alesha had quickly embraced the idea of celebrating her birthday one month early. Because, why not?
When Rachel House’s nurse, Dadan, arrived at her house that morning, he was relieved to see a bright beaming smile on her face. It was like the entire sun is shining brightly in Alesha’s room that morning.
This 13-year-old girl, who had been through the most trying 2 years in her journey with Osteosarcoma, is at last given a few days of reprieve from the severe pain and other complexities that had plagued her.
But first, Dadan had to perform the usual task of physical assessment; examining the cancer mass that has left a gaping wound on her shoulder, checking the catheter to make sure all is clean and functioning well.
Today, Alesha showed no discomfort or pain throughout the examination. Her eyes kept darting outside, in anticipation of the promised excitement of a birthday celebration.
“Are we done yet?” Alesha asked for the second time. Dadan smiled, delighted and relieved at seeing Alesha so full of cheer and life, even while the cancer is eating her body away.
“Just checking one more thing and we will be done,” Dadan assured her. The girl nodded, while her eyes darted back to the hallway outside her room.
Alesha’s actual birthday is slightly more than one month away. When Dadan first suggested that we celebrate her birthday early, she was hesitant.
“Are we allowed to do that?” She asked her mother quietly.
Amidst the many uncertainties and as Alesha continued to have more difficult days than good days free from pain, we wanted to make sure that she and her family could enjoy the celebration of what could be her last birthday.
As soon as Alesha and her mother said “yes” to Dadan’s suggestion, Rachel House team and volunteers went into full gears to fill the day with everything that Alesha love.
Our wonderfully generous pastry chef, Tiar Vafilin, who has for years put glorious smiles on the faces of Rachel House’s patients with magical cakes of their dreams, worked her magic again this time, at a short notice!
“Ok, we are done!” Dadan’s words immediately brought a smile to Alesha’s face.
As if on cue, Alesha’s family came into her room singing a birthday song. Her mother walked in holding the birthday cake all lit-up with bright burning candles.
Even though she could not get up, the joy was clearly shown on Alesha’s face. She looked with glee at the cake and the various gifts on Dadan’s arms.
“It is Nakano Miku, my favorite anime character!” Alesha squealed when she saw her birthday cake. Very happy to know that her request for the special birthday cake was fulfilled.
Dadan could see the look of sadness in the eyes of Alesha’s parents, even as they sat on the floor to cheer Alesha on as she blew out the candles. Both knew in their hearts that this may very well be the last time they get to see their little girl blow out the candles. This is the harsh and heart-breaking reality.
But on this very day, Dadan hope that he could at least carry a little bit of their burden and help bring cheer to Alesha and her family.
What we do to help
Alesha was diagnosed with osteosarcoma (bone cancer) at the age of 12. By the time she was admitted to Rachel
House’s service, the cancer had metastasized to her lungs and the cancer was no longer responding to the treatment.
The cancer mass had broken through her skin leaving gaping wounds on her leg. While the cancer wreak havoc in her system, it has also caused bowel obstruction causing pain and severe discomfort. With limited movement, anime is the only thing that can cheer her up.
Refusing to return to the hospital in the middle of the ongoing pandemic, Dadan’s visits is the only medical assistance Alesha can rely on to help manage her increasingly complex and challenging symptoms. Dadan had to jump through many hurdles in order to get Alesha access to the large doses of morphine she needed to keep her comfortable and free from pain. Luckily for Alesha, her oncologist and the team at the hospital remained available to work closely with Dadan to keep Alesha comfortable.
We cannot even begin to imagine what Alesha’s final days would have been like without Dadan’s presence by her side. For every child Rachel House cared for, we know that there are many more that are left to endure untold pain and suffering at home, without access to care.
This is what keeps our nurses going, braving the streets against all odds to reach the children who needs us. The smile on Alesha’s face is what fills our hearts with gratefulness knowing that in that moment, she is well.
*named changed for privacy