On August 8, 2013, Avery was taken to her pediatrician because for the prior month she was not feeling well. I finally asked the doctor to do some blood work on her. He sent us for an ultrasound. Then they asked us to return to his office, and he informed us that Avery had cancer, and to take her to the hospital right away. The doctors told us they believe it was Wilms tumor. So we were told that she would be losing a kidney and that hopefully they can remove all of the cancer. Several hours after admission as a patient, examined by several other positions, subjected to numerous tests, forced to ingest medication, everyone finally agreed her cancer was indeed Wilms tumor, and surgery was scheduled.
Avery was prepped for surgery, and an hour and a half later into a five hour procedure the surgeon came out of the operating room to inform us that after opening Avery up, they realize that Avery did not have Wilms tumor. Avery had stage 4 neuroblastoma. They closed her up, and immediately started chemotherapy. At this time they only inserted a double lumen Broviac into her chest.
Over the next five months Avery endured many hospital stays, fever, sour belly, shots, allergic reactions, blood draws, blood and platelets transfusions, brovic dressing changes, daily cleanings /flushes of her port, medications and five rounds of chemotherapy.
Avery is an amazing little fighter. A rundown of her treatment thus far has been:
A double lumen Broviac inserted into her chest. Five rounds of chemotherapy. Losing her hair three times. After the second round of chemotherapy, Avery got something called aphersis this is where they harvested her own stem cells, to get back after they were cleaned later in her course of treatment. They were amazed when they retrieved 65 million stem cells from our little superstar. Their goal was 10 million. Luckily extra vials will be stored for her until she reaches 18 years of age. A 7 1/2 hour surgery, resection of the tumor. In addition they discovered and did Corrective surgery of malrotation of the bowels. Removal of her appendix. Removal of 90 to 95% of the cancer, the remainder was attached to all of her organs. At this point the risk to remove any more outweighed the benefit, as Avery started bleeding so they closed her up.
Here is when her treatment took a turn for the worse. One of the hospitals we were at, gave us a diagnosis that Avery was an NED which means no evidence of disease. This meant my daughter was in full remission. We were so happy it was the first time I was able to breathe a sigh of relief. And I thought after five rounds of chemotherapy we had a true miracle.
Unfortunately that only lasted three days. This is when my world started crumbling once again. My oncologist called me with such sorrow in her voice I knew something was not right. We got our second results from a different hospital back. A secondary hospital the Children’s Hospital of Philadelphia, known as CHOP, called us to inform us that Avery was not an NED. She had full body cancer in her skull, entire spine, shoulder blades, upper arms, full pelvis, thighs, and in her bone marrow. Thank God for second opinions. I recommend everyone get one.
At the first hospital, the radiologist reading her scans, said, “he only looked at the first one, and it was clear and he never looked at any of her other ones.” A hard lesson learned, I went to the hospital and forced them to change policy, so this would never happen again to another child. Now all oncologists must read their patients scans after a radiologist read the scans.
After this, Avery received two rounds and MIBG therapy. This is full body IV radiation for 7 days. The hardest part was being kept behind lead walls, where she could not be touched or held by me. My heart hurt, every time she asked for me to please hold me, mommy can you come to me. All I could do was say I can touch you for a brief second and from over the little wall. My little tiny couldn’t understand why mommy or pop-pop had to wear gloves and a gown to be in a room with her. She was scared. As a result of these therapies her thyroid is completely useless. She will be on medication for the rest of her life for that. When she got home as well was not allowed to eat on regular plates everything had to be disposable all her stuff had to be washed twice and not mixed with anybody else’s she couldn’t sit next to or on anyone’s laps and still felt the comfort of being home but not the love of contact for two more weeks.
We hope then prayed that she would be cancer free after this therapy, we were disappointed, yet hopeful that she would become cancer free soon. Next, she received a stem cell rescue at CHOP. Some call it a transplant, the doctors call the rescue, because it’s rescuing her life. She would receive five days of high-powered, three different types of chemotherapy at the same time,to wipe her whole entire immunity out of her body. This is where Avery received her own stem cells back that they harvested earlier on. This also means now that her unity will be fresh and brand-new like a baby she needs to receive all her immunizations shots all over again,after 100 days from transplant. A stem cell rescue usually your in the hospital for a total of three weeks to a month. As a result of this procedure my daughter develop a complication called venoocclusive disease (VOD). This is what occurs when small veins in the liver become obstructed causing blood clots. This was life-threatening. She ended up in ICU, and had to get a drain inserted into her stomach to help alleviate some of the fluid. It was touch and go for about a week. She was hooked up to oxygen and 4 different IV’s. They could not get the drain to stop the abundance of fluid leaking out. She had to get about 6 -7 painful dressing changes daily. Avery had to endure a lengthy two months stay at chop, and managed to fight her way back. During this stay she was not allowed to have hardly any visitors. We were able to at least get out for an hour or two a day in the private playroom still with no other kids. We washed everything that touched her every single day, including all her stuffed animals and blankets, clothing etc. hers and mine. Thank God, I was able to get multiples of Ariel, Lilo,and Stitch. We watched a lot of Disney movies. After these two months we were able to both say,most of the movies verbatim.
Following the stem cell rescue, Avery received 20 rounds of proton radiation treatments at chop. The hard part about this is that she needed to be sedated daily, for multiple weeks in a row.
She then completed 6 rounds of immunotherapy. Immunotherapy has been and is very painful. My daughters hospital stays are two times each month for about five days apiece.
During these treatments Avery suffered with intense pain, allergic reactions, 105 fevers, abnormal body and organ functions. As a result she needed to be put on high blood pressure medications due to the complications of her kidneys now. The medications she had to take at home are horrendous in every sense of the word. Avery experiences burning in her mouth, lips that crack and bleed. Her nails peel and her skin on hands face and feet cracked. The medication makes her photosensitive, drastic mood swings, and causes pain in other areas of her body. However, without this therapy it would decrease Avery’s chance of survival.
This super brave child has been subjected to multiple CAT scans, double bone marrow biopsy’s,and MIBG scans every three months for a long time. Thank god Now she is considered NED no evidence of disease. She continues to have to go for routine scans every four months.
The long-term side effects thus far from her cancer treatments are: organ damage, infertility, stunted growth, spinal wedging, breakdown of her teeth(chemotherapy eats right through the enamel leaving your teeth gray and black), permanent hearing loss. As I mentioned before her teeth wound up with an eminence amount of work. She had 7 root canals, 8 stainless steel caps , 4 white caps, 12 cavities and 1 removal. She has tiny tattoos all over her body, that a permanent from where they had to do the laser proton radiation therapy.
We decided to donate her tumor to Science so they may one day find a cure. Thank god we did as they discovered that she also has a gene mutation for colon cancer. Her own body made the mutation as a result of her Neuroblastoma. Now we will have to start treatment at age 10, colonoscopy and endoscopy to monitor it. They said the type of colon cancer shows the mutation for is an aggressive one.
Avery must now we are hearing aids in both ears that she gripes wearing every day.
She now wears eye glasses to. She has permanent kidney damage. One shrunk to 30% and the other one is 85% . They believe that to smaller one will continue to shrink and will result in removal in the future. One of the hardest parts of this entire therapy is when she tells me,”mommy one day when I have a baby in my belly and I have a baby, I’m going to love her and be a good mommy like you. That breaks my heart.
Despite all she has gone through, Avery is an amazing loving and giving child. If she saw, or heard another child upset or crying, she would say, “mommy can we please give them one of my toys or stickers to make them happier.” The funny thing is she gave all her brand-new toys that she just got a way to make them happier.
My daughter, Avery is a gift from God, to us, and everyone she meets. She always brings a smile to the face of anyone who meets her. She has taught me so much. How to persevere, live in the moment, and love on a deeper level. Fortunately through an unfortunate circumstance, this experience with my daughter has renewed my faith in humanity. There are so many selfless people out there in this world, that love to just give, and not ask anything in return.
