Avery, my daughter was diagnosed with cancer on August 8, 2013. She was three years of age. Avery enjoyed going to the library, Gymboree, crafts, playing with friends etc.
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 the only inserted a double lumen Broviac into her chest.
Over the next five months Avery endured many hospital stays, fever, sour belly, shots, severe allergic reactions, full body hives,
Mucoitis (That is open bleeding sores and lesions throughout the entire Digestive track from the mouth internally down to the butt. She would vomit buckets of blood and mucus at least 15 times a day) she was swollen everywhere almost not being able to see her eyes open, blood draws, blood and platelets transfusions, brovic dressing changes, daily shot of gcsf and she would scream it burned in her body not just at the shot site. She had to have her 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:
Hey double lumen Broviac inserted into her chest. 3 separate pic lines in her arm. Five rounds of chemotherapy. Losing her hair two 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 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. She still felt the comfort of being home but not the love of contact for two more weeks.
We hope them 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. It was explained to me that they will be giving her enough chemotherapy to kill her then saving her life with her own cleaned cells. 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 immunity will be fresh and brand-new like a baby. She needed 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 for over 13 days. It was touch and go for about a week. She had to get a drain inserted into her stomach to help alleviate some of the fluid. It did not work out as they planned. 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 the words of most of the movies verbatim.
Following the stem cell rescue, Avery had to take 3 months of Accutane. This medication was so harsh on her body and all her skin. At the same time, 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 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 peeled 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. One of the medications was called Accutane.
This super brave child has been subjected to multiple CAT scans, several 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 continued to have to go for routine scans every 4 months then 6 months then yearly. Now they have her in the survivor clinic. She goes to Children’s Hospital Philadelphia once a year for 7 to 9 hours of back to back doctors. It’s a very draining and emotional day.
The long-term side effects thus far from her cancer treatments are: organ damage, stage 3 kidney disease, infertility, stunted growth, spinal wedging, cataracts in both eyes, breakdown of her teeth (chemotherapy eats right through the enamel leaving your teeth gray and black), permanent high pitch hearing loss, and difficulty saying certain sounds. 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. She still also suffer from low energy at times. Most intense side effect is PTSD.
Avery must now wear hearing aids in both ears that she gripes wearing every day. She has permanent kidney damage. One shrunk to 20% and the other one is 85% resulting in stage 3 Kidney disease. They believe that to smaller one will continue to shrink and will result in possible removal in the future.
We also donated her main tumor to science. Thankfully, we did this, because in their research they found out that she had the colon cancer gene. This is called APC Gene mutation. Her body mutated itself before she was born. Neither my husband or I have this gene thank God. So at age 12 to 13 we will be going for preventative treatment of care for colon cancer. There is 10 types of colon cancer 10 is the worst ,she has number 9. Avery will have several thousand polyps that will have to be removed over a lifetime. We will yet again overcome!!!
4 years Avery asked me to take her to the Dr. She told me her ear hurt bad. Avery had a 3 1/2 hour failed surgery to remove what was missed diagnosed as a polyp. It grew back with a vengeance. The doctor then cut it out again at a follow up appointment. On his regular table, with no pain medicine, I did not realize what he was doing to her when he was doing it. She was screaming. He told me to keep her still. I thought she was just afraid. Then she started bleeding out of her ear. Needless to say I was pissed and was. It quiet. I asked for all of her records from them and they got a little upset because I want to second opinion by Chop. When I was told I needed to make an appointment with the person that does more difficult cases. The response I got, was since you want all her records now you have enough time to go get your second opinion by Chop. We don’t have any appointments till the end of April. I felt like that was very unprofessional of this practice at the hospital. We got into see a Specialist who specializes in ENT for over 30 years he said he’s never seen anything like it. The so called polyp that was taken out was sent to Chop . Chop said the specimen was left out for over four days before processing so it compromised the specimen to begin with. They were not happy with that information. We went to chop and got a 3 1/2 hour MRI without sedation she was a rockstar they did not want to do sedation because she had a cold prior to coming in. Then she had a four hour surgery at Chop to remove a little bit more than 1 inch tumor. The ENT in plastic surgeon were able to remove it fully and repair the ear without a body skin graft. They cut open her ear pealing it back reconstructing the canal. They took part of her fashia in her scalp and use that for the skin graft. It was and is very painful. Now we just have to wait and pray doesn’t come back. We will have to wait and see. She still is experiencing pain and high squealing in that ear. Every time she grows a bit the scar site reopens and has to heal all over again. The canal has been closing over time and they pray it stays open enough to not have to do more surgery.
In the end of May avery was complaining of pain upon touch in her spine and joints. We took her to Chop once again praying that she did not relapse with cancer. She went through a gamut of CAT scans MRIs and and Mibg scans. Thank God everything was clear. Still not understanding why she has so much pain.
So fast forward age 10 headed CHOP once again. The signs and symptoms of Avery has been experiencing they told us would start around 13 years old. Unfortunately they are starting earlier. She had been having pain, bleeding and is concerned herself. I have to become Mama bear once again and be an activist for my daughter!!!
They did and endoscopy and colonoscopy found one huge polyp that was bleeding (non cancerous) and 4 tiny ones with markers for mutation to change cancerous if it was not taken out at stage 0. They also found dried blood at the bottom of her esophagus which the test biopsy was ok as well. We are now traveling once again for her ent, dermatology and in need of an x ray before she went for massive work up in July.
Avery’s next full work up Echocardiogram, x-ray, blood draw, EKG, Sedated Mri and cat scan, urine scan, kidney ultrasound, Ent, Dermotologist appointment was mid July. They said everything looked great except her thyroid was off they upped her medication we have to repeat labs in August and go back to them at Children’s Hospital Philadelphia in October. They also saw on her scans that she had demineralization in all her bones so that is a big concern as well they are going to do a bone scan the next time we go as well. Then go from there right now we just take more bloodwork and see what the next steps are. She will be going to go get all of her teeth Sealed to prevent more damage and bone loss.
As of today our new things to tackle or double vision and her one eye that’s on an off, body pain, hearing loss/ear pain. We need to go back for her teeth, Due to active treatment it destroyed her baby’s and adult teeth as well. She also has no secondary teeth in most areas her mouth and is constant source of discomfort.
They said that they will need to do a pallet expander once some teeth thr in to even anchor it. Then later in life she will need implants. The ent gave her new medications that they are Experimenting with to see if I can help her and her pain and prevent new growth of scar tissue. We currently go every 2 months to chop to clean out the wax and cut out scar tissue growth. We go to the audiologist monthly as her ear molds cause her pain.
Thankfully Avery will now only have to go two times a year for Scans colonoscopy/endoscopy to monitor the APC Gene mutation/colon cancer and keep ahead of it, and her overall large cell tumor scan.
Our next visit to CHOP will be Next month to the dermatologist. I sent in 2 pictures of a painful spots on her mid section. It looked concerning enough that they said to bring her in for a possible biopsy and or to schedule a removal. (Avery already had 6 years ago a spot growing on her back needing 14 stitches- all boarders around it were clear and they said they were not sure on the biopsy so they removed it) Then in June we have the bigger stuff. A Colonoscopy, sonograms of kidneys, thyroid, heart , echocardiogram, Ent, Dermotoligist, kidney dr, survivor ship, endocrinologist, urologist, Mri’s ,labs drawn, hereditary, cardiologist and I am sure I am forgetting a few.
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. The Dr.s said she should not have children later in life.
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. She was known on the floors as the sticker and toy girl because she always give out stickers to everybody every day and toys. She has also done tons of various fundraising for children’s cancer foundations.
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.
Avery is a ray of sunshine 🌞 and we are one of the lucky ones for today. Wow this was insane. I left out of this brief recap all the sleeplessness nights, fear, numbness, night we all endured. I am so Happy to get in down.
With everything, she still smiles and is my hero.
Thanking you in advance for any and all help.
Averys page Www.Facebook.com/averyandherbravery