Ganglioneuroma

Published on 28 May 2021 at 09:45

Four years ago a tumor was found in Nienke's abdomen. A ganglioneuroma. Nienke was so ill at the time because of her ROHHAD that we didn't pay much attention to it. The oncologist told us that it is most likely benign and therefore did not have to be removed.

Our experience has taught us that it is better not to bring up Nienke's tumor during conversations. When Nienke just got diagnosed and we talked about her condition and automatically named the tumor, the word tumor made a big impression on people. Her condition is so complex that people often remembered the only thing they knew, namely the tumor. For many people the word tumor is synonymous with cancer. After that, it soon started circulating that Nienke has cancer and this was and is not the case. We often simply call it a "growth" during conversations.

Because we as parents know Nienke's condition, Nienke's benign tumor has not been a source of concern for us at all in recent years. The doctors agreed with us, but every time Nienke ended up in a crisis, the tumor and the possible removal of it came up again. This was also the case last January. This time it felt different. After researching the possibilities, the team decided that it is better to remove the tumor. The fact is that it is something that does not belong in her body and that we do not know whether it is a disturbing factor.

It was decided by the team that we, as parents, could give the "green light" when we and Nienke were ready to plan another hospitalization and surgery. Because of our son's surgery and Nienke's birthday, we decided to postpone this until now. At the beginning of this week I emailed Nienke's doctor and told her that the operation can be scheduled as far as we are concerned. Yesterday, the oncologist called that the scans can take place next week and probably the operation the week after. This means another few weeks full of tension for us, but especially for Nienke. She is doing fine and just enjoying life as a 7 year old at home and then you have to go to the hospital while you just feel fine. This is very disappointing to her.

Could you keep us and her in your prayers and thoughts? Pray that Nienke gains physical and mental strength. Pray for the doctors to be given wisdom and helped  during surgery. Pray for a speedy recovery. Pray for her brothers and us as parents. It's not easy to make these choices. It's so nice to be at home as a family and have a somewhat normal family life. We pray that this hospital stay will be short-lived and that we can enjoy a wonderful summer as a family afterwards.


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