Oct 28, 2020 Latest post:
Nov 24, 2020
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting. This is Hajlie’s story.
* Hajlie woke up early one morning in April 2020 and started complaining of left arm pain, at the time I did not think to much about it as she said the pain was not bad, but described it as achy and slightly uncomfortable. I told her we will keep an eye on it and that she probably just slept wrong or could have injured it during Volleyball, she was on the school team and played Volleyball every free minute she had. *Three weeks later (beginning of May) I noticed she was again complaining of arm pain, she said it never really went away, but instead the pain would come and go. * May 18th she saw her Pediatrician who ordered X-rays of her left arm, the result showed to be normal. Her Pediatrician advised us the left arm seemed to be weaker than her right and since she was also having pain she referred Hajlie to an orthopedic specialist for further evaluation. * May 27th she saw the orthopedic doctor, he determined her pain was most likely related to a possible sports injury so he referred her to physical therapy. * Hajlie received physical therapy from June 23rd-July 29th (once weekly) which also included one round for needling. She felt the pain was improving but it still never resolved completely. Mid August we noticed she developed swelling over her left shoulder blade and the arm pain started to become more frequent and more painful. * August 26th she was seen for her annual wellness exam and we mentioned how the arm pain never resolved and was getting worse and that her shoulder blade looked swollen, her pediatrician thought it might be slight scoliosis and ordered a spine X-ray, the results showed a slight curvature, so Hajlie was referred to an orthopedic spine specialist. * August 31st she saw the spine specialist who said the curvature in her spine is very slight and it could have been the way she was standing when the X-ray was preformed, therefore she did not think it was “true” scoliosis. The doctor noticed the swelling in her shoulder blade and diagnosed her with Sprengel Deformity (a rare congenital disorder where one shoulder blade is higher on one side of the body). Hajlie was then referred to another orthopedic specialist who specializes in upper extremities. * September 14th she saw the orthopedic upper extremity specialist who ordered X-rays of the left shoulder, the results determined Hajlie did not have Sprengel Deformity, but instead had a large mass that was highly suspicious for aggressive bone lesion such as Ewing Sarcoma (a rare type of cancer that occurs in bones or in the soft tissue surrounding the bones) the mass covered her entire scapula. We were then told the next step was to see the orthopedic oncology surgeon. This was an extremely hard day for our family, finding out the pain Hajlie had been enduring was caused by a tumor that was most likely a rare form of cancer. * September 15th she had an MRI, the result also showed there was a large mass likely Ewing’s Sarcoma. *September 16th she has numerous blood tests ran, all which came back normal. * September 17th she saw the oncology surgeon who advised us Hajlie would need a biopsy to determine if this tumor is Ewing’s Sarcoma and if not, to find out what exactly it was. He said he would be able to freeze the specimen immediately after removal and look at it under a microscope to determine if it is Ewing’s. This needed to be done as soon as possible. He also told us that it can be very hard to diagnose this type of cancer as it is usually misdiagnosed as a sports injury, or growing pains and there is no specific blood test for this. * September 18th she had a CT scan and more bloodwork. CT scan showed a small pulmonary nodule that the doctor was not to concerned about and the bloodwork was normal. * September 21st Hajlie had the tumor biopsy, and two bone biopsies taken from each side of her pelvis. When the surgeon looked at the tumor specimen under the microscope he determined there was a 99.8% change this was Ewing’s, the specimen still needed to be sent to the lab for final result before he could say 100% its Ewing’s. She then had a port placed under her right shoulder while still under anesthesia. * September 24th she had a PET scan, results showed two abnormal lymph nodes, both located on her clavicle but nothing the doctor was concerned about. * September 25th is the day our lives changed forever... it was confirmed she had Ewing’s Sarcoma. Even though we had known for the past two weeks this was most likely the diagnosis, we always held out hope that she was going to be that 2%. Now that we had the final result Hajlie was admitted at Children’s hospital to start her first round of chemotherapy. She had chemotherapy for two days then discharged. * Her treatment plan will last 8-11 months. She will have chemotherapy every other week, week one is 2 days of treatment, with the following week off, then 5 days of treatment with the following week off and so on. She will have bloodwork twice a week on her off weeks as well as the Neulasta injection once a week on her “off” weeks, this helps her bone marrow produce white blood cells. * October 3rd one week post first chemotherapy she was admitted into the hospital for fever and lower back pain. She was given IV antibiotics for 48 hours while we waited for blood culture results. Everything came back normal and she was discharged on 10/05. The doctors think this could have been related to the Neulasta injection she received earlier in the week. * October 12th first day of her 5 day treatment. She has 3-4 hours daily but is able to do it as outpatient. She is sent home with her port still accessed so she can receive continuous fluids through the day and night. * October 12th was also a really hard day emotionally for her. As most know there are many, many side effects to chemotherapy, one main side effect is hair loss. Hajlie started losing her hair about five days after her first chemo treatment, she came to me with tears in her eyes and said it was time for her to shave her head because having to watch it fall out and seeing bald spots was just to hard for her. My heart was completely broken for her. At 14 years old your hair means everything, especially to Hajlie who has always been a “girly girl” and always made sure her hair was styled and looked perfect! Before and during shaving her head she cried, her dad and I both cried with her. Once it was all done I could see the relief in her eyes, she no longer had to deal with the emotional burden of watching her hair fall out. She again looked at me, but this time with a bit of a smile and said she feels better now that it’s done and over with. She has days where she talks about wishing she still had hair, but she has accepted that this was apart of her journey and that it is not forever, and her hair will grow back. No one, not even myself can begin to comprehend what it’s like being a teenage girl and going through something so traumatic like this, unless you have experienced it first hand, and Hajlie has done so with so much strength and grace that I know she can and will get through anything she is faced with. * Chemo week October 12th-16th. Hajlie was very tired, she slept about 18-20 hours a day. Her appetite was pretty much no existent, she lost a total of 8 pounds (since first starting in Sept.). She had horrible nausea and she was sad most the week because she was tired and didn’t even have the energy to talk to her friends on the phone. She would often ask me why this had to happen to her, and that she just can’t do this because she was tired of feeling so sick..It is by far the most devastating thing in the world to watch my child, my baby suffering from the reality of cancer and the side effects of chemotherapy. Nothing in this world is worse than knowing there is absolutely nothing I can do to take the physical mental and emotional pain away, nothing! The only thing our family can do is stay positive, support Hajlie every step of the way, remind her how strong she is, and on the days she is not feeling strong ensure she knows that’s what we are here for, that we will always and forever be here for her no matter what, let her know she has every right to be sad, angry, emotional and to be able to express all her emotions whatever they may be, continue to remind her that she has so many friends and family rooting for her and standing behind her through all this. * October 26th third week of chemotherapy (two day week). Hajlie did well during her treatment but she woke up around 9:30pm and said she was having chest pain and a hard time breathing. We went to Children’s ER where she was admitted for low oxygen level. Her oxygen was dropping as low as 65% and her chest X-ray showed she had a lot of fluid in her lungs. She was placed on oxygen immediately and was given the medication Lasix to help rid her body of the extra fluid. * October 27th her providers said fluid retention is not uncommon with one of the chemo drugs Hajlie had received the previous day, but that her chest pain and difficulty breathing came on very suddenly and that she retained more fluid than normally seen and they were not sure exactly why.. She had an echo (ultrasound of the heart) which came back normal and her chest sounded clear since starting the Lasix. Since everything was looking good she was able to have her chemotherapy treatment and she has not had any side effects, she is in good spirits and had a great appetite all day. She will stay another night inpatient so they can monitor her as they ween her off the oxygen and hopefully we will get to go home tomorrow.