Category Archives: algemeen

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Roller coaster

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We have received such sweet and overwhelming reactions to Vera’s website. Thank you! Several donations have come in already for which we are so thankful and happy. Thank you again! Unfortunately, we have had to switch quickly from all the positive attention to big concerns for Vera these past few weeks.

Two weeks ago we received a phone call from the pediatrician about some results that had come back for the many tests that had been done to figure out why Vera has been having ongoing issues with her bowels. It was bad news: raised values in 2 components of Vera’s urine that point to neuroblastoma. Vera has a greater chance of developing neuroblastomas, a form of cancer, due to her syndrome and the ongoing diarrhea could be caused by a neuroblastoma in her body.
Two days later an x-ray was ordered for her chest and we were called that evening with bad news. The x-ray showed several anomalies that could be tumors. Everything started to point in the direction of neuroblastomas and we were starting to get really, really worried.
Two days after that new tests and exams followed at the Academic Medical Center in Amsterdam where the pediatric oncology specialists are.

Our talk with the pediatric oncologist at the end of the day took a completely different turn however. The anomalies that were seen on the x-ray turned out not to be tumors, but two broken ribs and all of Vera’s bones looked very brittle. Apparently, Vera has quite porous bones and with that another medical issue. Vera will be examined for this in Utrecht this week to find out why her bones are so porous and what would be the best treatment option.
Now that the spots turned out not to be tumors, the neuroblastoma suspicions are a lot less and we will find out if further examination is necessary or whether a new check will be done in 3 months to monitor her for raised values.

And then there are still the long term ongoing issues with her bowels that have not been diagnosed yet. We will continue the search for answers after her bone examinations.

The past couple of weeks have been an emotional rollercoaster, we were very concerned about cancer and the doctors seemed to be preparing us for this. As it turns out, cancer appears not to be the case, but our girl does have another added issue: porous bones. And the bowel problems continue to exist.wkzbrieven
In the coming week things will still be tense with 5 appointments in the hospital. We hope and pray for a good outcome and effective treatment.  In the mean time we buckle down tightly again for the next rollercoaster ride.

Niels

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Giving, receiving and asking for help

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We have both had a lot of experience in giving help. Whether at work, at church or elsewhere, helping is usually a rewarding experience (no wonder I became a therapist myself). You make a difference in someone’s life, people are thankful and it feels good. I believe there is even such a thing as ‘helper’s high’, a euphoric feeling you get from helping someone and a pleasant calm afterwards. Once you are aware of this, you would never do anything else!

Receiving help was a lot more rare in our lives. Usually centered around a specific event such as moving or having the flu for a week.

And asking for help… we almost never needed it and certainly rarely did so. Perhaps with the exception of borrowing a cup of sugar from the neighbors. gemeenschap

Right now we receive a lot of help in many ways and we are learning to accept it. We are even learning to ask for it sometimes. But it takes some getting used to. Perhaps because we know it’s not just for a short period such as a week of the flu or the early weeks after giving birth or moving.

We will need this for a while.

It is admitting that we cannot do it on our own. That we need other people to help us do the normal things in life. That it is essential for us to be able to keep going, individually, the two of us and us as a family.

The African saying: ‘It takes a village to raise a child’ is the message here. And with a handicapped child it is not just teaching the child life lessons, our village consists of doctors, nurses, family, friends, neighbors and members of our church. And our village helps with medical care, mental support, pans of soup and pasta (and sometimes even chocolate cake), time and giving attention to our other healthy daughter, places to spend the night, cards and prayer, painting our garden storage unit, vacuuming our house and spending time with family and friends, a night of good sleep. And the village can even help us with much needed financial support.

Raising and caring for a child with disabilities requires parents who can accept help, who are learning to say yes and have the courage to ask. We have started doing this.
Leonie

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Enjoy reading!

Niels