We left Chase's last nephrology appointment in March a little relieved yet a little anxious. It has been difficult in the past to explain to the doctors exactly what is going on with Chase, especially when he cannot communicate with us. We were just telling the doctors what we were observing. Its kind of like when you take your child to the doctor because you know they are really sick and feverish, but by the time you get there the children's Advil has kicked in, they seem perfectly fine and you feel a bit crazy :). However, this time he had a sick "spell" while we were at the appointment and thankfully two doctors were there to witness it. After hanging out for about two hours while they observed him and done a vascular study, they told us that something was wrong, but they didn't know what it was. They assured us it was not life threatening, but said they were going to do some consulting and have us come back in a few weeks with a plan. On Tuesday of this week, we took him back to the children's hospital for the follow-up appointment.
The "spells" Chase has when his blood pressure increases and then falls rapidly vary in length and severity. He seems to have visual disturbances and headaches but is unable to let us know exactly how he feels. We have taught him the sign for "hurt" (using the pain he feels from his colitis) and he signs to us that his head and/or right eye hurts during the spells. He also wants to be held and acts a little dizzy. Sometimes he feels really bad for about an hour and other times we notice him having a spell and he is quickly over it and back to what he was doing.
The diagnosis we got on Tuesday was pheochromocytoma. It is a rare tumor that can be located anywhere in the body although it is most commonly found in the adrenal glands. It causes the release of hormones that conrol heart rate, metabolism and blood pressure. These tumors are almost always benign, meaning they are not cancerous. It is rare for a child his age to have this type of tumor and in children it is even less likely it would be cancerous. They did do a very in depth ultrasound of his kidneys to look for it and did not find it. They told us they are usually very small and hard to find.
The treatment for pheochromocytoma is removal of the tumor, but in order to remove it, you have to find it. They explained to us that finding it is not easy and simple x-ray scans do not locate them easily because of their size. They mentioned the next steps they would take in finding it, none of which are easy. We would be exposing Chase to either nuclear medicine, radiation from scans and/or contrast dyes that are damaging to the kidneys.
Our plan is to watch him closely and journal his episodes and blood pressures. If anything changes about his health, they said they would be very aggressive in treating him. If he continues to do well, they will just watch and monitor him closely.
We are thankful to finally have a piece of the puzzle put together for him. It still seems to me that all of this is connected somehow...his colitis, this tumor and his illness as a newborn. It is just hard for me to imagine why he would have so many rare things going on. It is complex to us, but simple to God. He knows all and created Chase in his image, just as he wanted him to be.
My pastor recently shared a story with me that can put difficult days into perspective. Chase and I recently took part in an Easter play at our church. Chase played the part of Baby Jesus in a scene where Mary was remembering Jesus as a baby. You know---Jesus was a baby, a toddler, a young man...it's sweet to think about how he must have been a silly little toddler and Mary had to run after him during his "terrible twos". Anyway, the story my Pastor shared with me was that a young girl was saved after watching the play. When her family asked her what it was about the play that pricked her heart, she told them it was seeing Baby Jesus. This one little girl's soul may have been the very reason God created Chase and allowed us to take part in the play. You just never know, but isn't the love of God magnificent! We are ALL here for ONE purpose...to tell others about Jesus. <3
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