It started with a kick off of her 15th birthday. Her father took her to a trampoline park. She had done a flip wrong and injured herself on June 4th. She then had an orthopedic appointment on June 14th. An xray was taken and cleared it. It was normal. The orthopedic had recommended her to go to PT,but she wanted to go to all the summer camps, so I said ok. Each time she came home she tells me she didn’t feel well so I asked her,”do you want me to take you to CHOP?” She said,”no it’s just my back, just give me IBUPROFEN or Tylenol.” Days went by and she said it’s feeling worse so we thought, oh maybe it’s just muscle spasms or the side effects of 18 spinal taps and the rest of her past chemo treatments. No one wants jump to the conclusion that it’s cancer, specially, when she’s been off treatments for 4 years.
Her father took her to the nearest ER the week before Ronald McDonald Camp. She was given muscle relaxers. She went to camp August 13-18. She had a great time though limited on physical activities, she said she had the most fun time with her friends. When she returned from camp, I scheduled her to be seen by the orthopedic but because the orthopedic cleared her based on her xray results taken June 14th, the results were normal. The orthopedic was not going to order an MRI and recommended her to go to PT.
Since you have to find cause for the health insurance to pick up the MRI bill, without the orthopedic’s order, the insurance will not pay for it. I called her pediatrician to see if they will be able to order an MRI, they said it would be very hard for them to order an MRI without the orthopedic’s consult. I scheduled a PT for Sept 4. Before Sept 4th came, on August 23rd I came home, she told me that she needs to go to CHOP, I took her. She said that she was feeling an extreme pain on her back and had trouble pulling herself up. She also said she had fuzzy vision.
At CHOP, the drs took another xray and found a narrowing on her L3-4. That gave them a cause to order an MRI. What was detected on that MRI, alerted the oncologist team. I was told that there was a fracture on her spine. The fracture was caused by leukemia. We were in complete shock, Aiyanna was in tears hearing these words.
In order to confirm it, the drs ordered a bone marrow which was done on August 25th. The results confirmed a relapse. It was hard to take the first time she was diagnosed with cancer but but the second time of learning that she has cancer again was more than I can bare. It made me so angry that it hurts my soul. I hate cancer so much! The news was a hard blow to me, my husband, my son, and Aiyanna. I told Aiyanna that I want her to fight. I want her to stay with me until I’m old. Her father told her that he wish he could take it away from her and take her place.
Since we have been admitted, her friends visited her, her uncles, cousins, and other oncology survivor families. Her paternal grandma flew in from Florida on Sunday August 26th, and left today. Her maternal grandparents have brought her food but she didn’t have an appetite. Pennington AG Pastors Brian and Frank had stopped by and prayed for her. Her godmother had stopped by.
On August 27th, she had her port in and LP and started her aggressive chemo treatments. She had a small complication with accessing her port. They had to make sure her heart was in good shape. She had an echocardiogram that showed, it is. We were also told that if Aiyanna needed a bone marrow transplant determined on the 29th day (Sept 24th) when they do another bone marrow biopsy to evaluate how effective the induction phase is when they will determine whether she’s high, standard, or low risk. Depending on that results will determine if she will need a bone marrow transplant. If she does, they will test her brother as he would be the best match. Her brother is more than willing to do it. And also depending on the risk is what determines which treatments she will take but there’s not much difference to the treatments. The time frames like her visits to the clinic and procedures will remain the same.
She had 2 days of chemo push. Her blood counts dropped and had blood transfusions. She’s had 2 transfusions so far. She had a rough night the other night per her dad. She had fevers and chills. Last night was ok. She has started PT and will have 3x a week. She’s walking better. She didn’t want her big brother to leave her. She said that her brother is a better nurse than her mother.
Her maternal grandparents are going to be there during the days while her father and mother goes to work. It’s a lot of travel, gas and bridge tolls and parking fees but we’re doing our best to make sure someone is there with her consistently. Support systems are a great help. I’m not sure how much the out of pocket cost will be, but I’m predicting it will be costly due to the length of her stay.
She’s supposed to start sophomore year at Lawrence High School but that will be collaborating for homebounds and virtual classes. She will not be allowed to go to school and we will be screening visitors when she goes home. Her immune system will be very compromised. Her immune system will be very weak that she wouldn’t have anything to fight off even a common cold.
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