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6 Month Post-Surgical Update

Thank you for your patience in receiving my 6-month post-surgical update. It has now been about 8 months since my craniotomy, but so much has happened, that I am now just getting around to updating everyone. The end of my pregnancy went well. I was going into the office once or twice a month to help Dr. Lockwood and although I was still not driving, I was getting around ok. My fatigue was increasing, but that was likely due to pregnancy.

Our son Theodore decided to make his appearance about a month early in September, just days before my firstborn's first birthday! I woke up that morning with cramps and he was born that afternoon. We were thrilled to meet our baby and so happy to discover he was healthy and thriving. He was diagnosed with clubfoot, and so we began the protocol to correct his feet at 5 days old. Theo has been in full-leg casts for 6+ weeks, getting a new cast every week.

At two months of age, he had a small procedure to cut the Achilles tendons in his feet and complete the correction. In a few weeks, he will get a special set of shoes connected by a bar that he will wear at certain intervals until he's about 4 years old. This method has a high likelihood of correcting the feet, as long as we follow the protocol. Considering everything that Theo has been through, he is continuing to do well, gain weight, move & coo and otherwise is a healthy baby. He does get uncomfortable, and he probably is in more discomfort than the average infant, but we understand this and are doing our best to provide as much comfort to him as possible.

As far as my health went with the birth, everything was smooth and I began recovering normally from labor. This labor went much faster than my first child and was essentially much easier for me. I felt a lot of relief after having Theo and I felt that my body was able to devote more energy toward healing. Now began the time to follow up with my doctors and see how to proceed forward. My doctors had originally stated they wanted to do a post-operative MRI with contrast to be able to see how much tumor was left after the craniotomy. The MRI determined that there is some residual tumor left in my brain. My surgeon estimates 20% is remaining. Furthermore, there appears to be active cancer cells and although they are not growing right now, because of the type of tumor, they are very likely to grow in the future. This is the scenario, that I and my doctors want to avoid.

This brings me to the stage I'm currently at. I have talked with all of my doctors including a few new oncologists who have been added to my team. They have discussed from their standpoint what their recommendations are. I am feeling better physically, mentally, and emotionally. However, taking care of two babies, even with help, is very hard work. I can do many tasks, but carrying the babies is hard on my arm and hand. Food preparation and cooking is difficult. Carrying car seats is taxing on my body and not recommended. And life in general is more tiring and tasks take me much longer to complete. I am still off work, because I have not been able to perform my job in most capacities. I do have plans on returning to work in the future, but I cannot say when at this time.

I have discovered that with all I have going on in my life, that I have to be very careful with how much I am taking on, because when I am overworked, it can and has caused seizure activity. Because I know that I am not healed fully, I am taking all the safety precautions to make sure that I am not in danger and my children are not in danger. This means for the majority of the time that Theo has been born, I have been living at my parents home about an hour away. They have been wonderfully amazing parents in my extreme time of need, especially when my husband has to work to keep our household going. If you know my mom and dad, my husband Robby or my sister Leslie, they want you to know that they are appreciating all the support they are receiving from you. They want to thank everyone who has offered advice and a shoulder to cry on. Please know that reaching out to these people means a lot to me, because they have been going through so much and need support as much as I do. I also include my close friends in this statement and my other family members. For those of you who have been supporting my family, I truly appreciate that because I could not be getting through this without my family and friends staying strong with me.

Now that we know there is still cancer that needs to be addressed, I have been faced with some decision-making and I am evaluating my options. My oncologist says that I have time to decide how I would like to move forward, because there is no tumor growth at this moment. That was a relief for me to hear, especially because of what our newborn baby is going through and we want to devote energy to him as much as possible right now. Our oldest, Marina, is doing very well and doesn't seem to be affected by anything that's going on. She loves spending time with her grandparents and all of her family and she keeps the light shining when things seem dim.

My medical doctors are recommending aggressive radiation with traditional chemotherapy. Some of my medical doctors feel that the pill form of chemotherapy will also be a good secondary option. Traditional chemotherapy for an astrocytoma of my type includes two medications with an additional shot which means I would need to be in the office to receive that. Some of the newer chemotherapy drugs including the one that was offered to me is just a pill, but you still need to have your blood monitored to make sure you're not getting too much of it.

At this time, I am considering all options and have ruled nothing out. When I'm ready to decide my treatment, I will start it at a time that makes sense for my family due to the intensity of the schedule. Until then, I am meeting with a few holistic doctors, doing research, and using herbs and alternative therapies along with diet to manage my condition.

I am not sure where this will all end up when it is completed, but I do have faith that I am on a path to better health. I trust that my faith, my doctors, my family, and my knowledge will guide me to make the right decision moving forward. This has been the hardest experience of my life, but I'm getting through it. I have two wonderful children, an absolutely amazing family and friends support system and I would not be in the state I'm in without them. Thank you for your continued support, it has been a long road, but I feel that better days are ahead. I look forward to the future when life is going smoother.


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Oct 12, 2021

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