In the fall of 2023, Eve suffered random bouts of sickness, but without any fever and always recovered almost immediately. She saw her pcp a few times because of all this but there were no immediate concerns. It was when her gait changed and her balance became a bit unstable that her doctor then felt she should have some imaging done.
Eve had a full tumor resection, followed by 6 weeks of radiation and she is now unseeing chemo, with a few more cycles left. Eve’s energy can be impacted hugely after a chemo session, at these times school hasn’t been possible, or outings if her immune system is very low.
For the most part, we try to just get on with life and keep it as ‘normal’ as possible for everyone. However, our calendar is now a series of weekly medical/therapy appointments. As Eve is special needs, this can be very taxing on her as she doesn’t fully understand what is going on and she is not always able to express how she is feeling or what she needs. This can be very frustrating for her. Her older brothers have been brilliant in helping her through this time with their patience and the time they give her by playing with her, taking her out for walks or just hanging with her!
Eve is a little live wire who always manages to get her point across despite her language limitations! She is feisty and strong-willed, hugely affectionate, and always happy to be the joker and enjoy a laugh!
Margot is mischievous, silly, and affectionate. She loves playing and wrestling with her older brother, reading books, watching animals (especially birds), going to playgrounds, and especially slides. She loves her family.
She was diagnosed with medulloblastoma in August of 2023. She was vomiting, having headaches, and reverted to cruising instead of walking independently.
She underwent surgery to remove the main tumor from the back of her brain, then significant rehab to regain the functions lost as a result of this surgery. She then had chemotherapy which was ultimately ineffective.
Every part of her treatment has been a struggle – severe side effects that kept her in the hospital for five-plus months, one parent had to give up their job, questionable ethics, and accountability from surgeons & hospital.
In the summer of 2022, Charlotte was throwing up daily for about 2 months, we were being evaluated by GI with no answers. She then started having really bad headaches and was not eating very much of anything. She had a seizure and we went into the ED for evaluation. There we had a CT that showed a 4x4x6 cm tumor on her cerebellum. She had not been able to walk very well by herself, which we had attributed to weakness from not eating. Now we realize that was part of the tumor effect as the cerebellum is the center for your balance and coordination.
The day she was diagnosed, she was emergently intubated and had a drain placed to relieve the pressure in her head. The next day, she had a tumor resection and then had 3 weeks of rehab afterward where she essentially learned how to walk again. She has been through 4 cycles of chemo. Each cycle is at least 28 days. Half of them take place almost entirely in the hospital, so Charlotte and I live in the hospital for a month at a time. She has had countless platelet and blood transfusions, CT scans, medications, and lab draws. She has a central line as well as a G-tube and she gets her nutrition and medications through the G-tube.
Our biggest struggle as a family is not being able to be together while we have our long cycles in the hospital. Our first hospitalization was from Aug 29-October 25 and our last one was exactly a month long. We can’t be together for weeks at a time, and during those times, my son can’t see his sister as he is not allowed in the hospital due to visitor restrictions. When we are home, there is more of a sense of normalcy, and we find that we are appreciating each other and being together so much more.
God has been at the center of our entire story. He has been so good to us throughout her fight. The tumor was so large, that the neurosurgeon remarked multiple times on its size of it. He had prepped us for a several-hour surgery but was done in less than an hour because it was able to come out in almost one entire piece. Then, our oncologist believed that her cancer subtype was one of the more aggressive (and less responsive to chemo) types based on the initial pathology, but after the final results came back, it unexpectedly ended up being a very responsive subtype. Finally, she had to have a stem cell collection for an auto-transplant during her last extremely high-dose chemo cycle (she will get back her own stem cells to allow her to tolerate the high-dose chemo). Our transplant doctor thought we might get less than half of what we needed (thought we would get 1 million, but needed 2 million). We ended up getting twice the amount we needed (4 million), thanks to the kindness and skill of a wonderful nurse and the prayers of so many people around Charlotte. We are hopeful that God is able to use the struggles that she and our family are going through, as well as his many mercies and miracles, to bring others to Christ.
Azileah is quite the jokester, she loves to play around and scare people and has got the most contagious laugh. She loves coloring and being on her tablet.
Azileah was diagnosed with Medulloblastoma on April 30th 2022. Before her diagnosis, she was going cross-eyed and had bad headaches.
So far, she has had radiation and 8 cycles of chemo. She doesn’t have much control of her right side and walking is limited; otherwise, she is doing good.
We are constantly worried about her because she tends to get high fevers. We have to be transported to the UNM hospital in Albuquerque where she is admitted due to a compromised immune system.
Eric loves the San Diego Padres. He also loves playing baseball too. Eric likes to listen to music and watch YouTube. He loves being outside! He enjoys wresting with his 3 year old brother, Vinny. And they both love playing with our dog, Bruno.
Eric was diagnosed with Medulloblastoma at the ER on 5/19/22 – a brain tumor was discovered and it was fully removed the next day. The cancer had also spread to the spine and other parts of the brain.
Eric had three cycles of induction chemotherapy and three cycles of high dose chemo with stem cell rescue. Eric’s longest run in the hosptial was 99 days straight. His treatment was at Rady Children’s Hospital and was on and off of being impatient for 7 months. Moving forward, we will monitor his MRI’s and we hope to avoid radiation. Treatment has resulted in some weakness for Eric. He can walk but is still working on his strength so he uses a wheelchair for long distances.
Our lives are now completely different than before; with many doctors appointments, hearing aids, physical therapy, medications and injections. Eric’s immune system is weak. I lost my job to take care of Eric full time. We can’t wait for the days that we can be care free and not worried about Eric’s health.
