The Backstory
First off - If you didn't know anything about this, don't feel bad. You didn't miss anything, and we didn't intend to alienate anyone. We just didn't want to get everyone worrying over something that could turn out to be nothing at all. Also, we know how news travels, and how, though unintentionally, incorrect information can get passed on and cause issues. this way, we could control the information, and people would be informed once there was actually something to share. Only a handful of people were in the loop on this.
Just a week or two after Margaret was born, we noticed a lump. An extra bump on her left shin, just below the knee. Babies are round and chubby and lumpy - we really didn't think much of it at first. Then we noticed that it was still there a week later, and that there was no corresponding bump on her right leg. It was soft - not bone - noticeably raised, and it would move a little bit. Later we found that it was causing her great pain if it were bumped or pressed to hard, and at times warm to the touch - warmer than the rest of her leg. It was time to get it in front of a doctor.
Margaret's doctor agreed that it was concerning and should not be ignored, but had no diagnosis. She consulted with the other doctor's at the practice and also spoke with some specialists. Though they had no conclusions, they did agree that Margaret needed to see a specialist in pediatric dermatology. The doctor's first recommendation was at DeVoss Children's Hospital in Grand Rapids. The hospital is highly rated, the doctors well recommended, and we had both friends and family in GR that we could stay with. Unfortunately, they are not covered by our insurance. The second choice was considerably less attractive despite being in Kalamazoo and covered by our insurance. We were not going to take something this important somewhere we were not comfortable with. So the search began.
Our insurance provider was less than helpful in finding children's hospitals in a reasonable area that would be considered 'in-network'. "The system doesn't really work that way". Thanks for nothing. Emily went to work finding the top rated children's hospitals for dermatology. Once she had a list that were within driving distance (which included some excellent hospitals), she called the insurance company once again to find which ones were covered. Motts at UofM - No. Riley's in Indy - No. Cincinnati Children's - Yes.
Cincinnati was covered and also happened to be one of the best on the list. They also happened to be 6 hours away. Emily called to make an appointment with the blessing of our doctor. Their first opening would be "in July". - - - - it nearly broke Emily's heart. Once she pressed, they found that they could get her in on March 18 at a satellite campus. It was 3-4 weeks away, but much better than 3-4 months. Even better, the appointment was with the head of the department who was very highly regarded herself. God was with us that day.
We knew it would be hard, but we made the decision that until we knew something, it wouldn't be right to get everyone worried about it. Maybe it was just a pocket of fat or fluid that could be drained on the spot. Maybe it was nothing and would go away with time. Maybe it was much worse and needed surgery. It was bad enough that we had to fret and worry over the unknown for all this time. We appreciate everyones prayers, love and support, but we couldn't put everyone else through that.
In the meantime, we've done a lot of praying. We took Margaret to the annual "Healing Mass" one evening at St. Bernard's (our parish here in Benton Harbor). With most of the parishioners in attendance over the age of 70, we stuck out like a sore thumb. As Father was making the rounds, Margaret was getting fussy. We were about 45 minutes in and she was likely hungry and needing a diaper change. When Father came to us, I stood and held her out to him. He blessed her and prayed for healing. She immediately calmed down and relaxed, falling asleep as I sat down. We literally put her illness in God's hands that night, and His presence was felt.
Emily took Addie and Margaret to stay with Margaret's Godparents (Emily's sister Anne and her husband Ryan) in Ohio - only a couple of hours from the hospital. Emily and Anne took Margaret to the appointment in the morning, and Addie spent the day with Uncle Ryan, decorating Easter eggs. I made the very difficult decision not to go to the appointment. We knew that if it was something serious, we would likely be in for any number of trips to Cincinnati or who knows where else. I would take the time off of work for any needed procedures, but forgo the initial visit. It was not an easy decision. And I still don't know if it was the right one. Emily was comfortable either way, and we knew she would not be alone.
The Diagnosis
The Lord doesn't promise to stop suffering, but He will always walk with you through it. The initial visit, last Tuesday ,with the pediatric dermatologist yielded little info other than that it was not a dermatology issue. They determined this after an x-ray of it showed a "blurry" spot. She was, however, able to get us in with a pediatric orthopedist as well as schedule an MRI. And she was able to get us in on Thursday of that week for both.
Emily and the girls returned home on Tuesday night. Tom drove up on Wednesday afternoon to pick up Addie, and after work, Emily and I were on our way back to Ohio with Margaret. It's a good thing she sleeps well in the car right now.
On Thursday morning, we made our way to the CCH main campus for our morning MRI and afternoon appt. with the specialist. Being understanding of our situation - 6 hours from home and prepping a 9-week-old for an MRI, they got us in right away. For Margaret's age, we had to stop breast milk 4 hours prior and sugar-water 2 hours prior. Marg was not a happy camper that morning. After the MRI, she came out of sedation fairly quickly and was holding milk down. When we told them that our next appt. wasn't until 4:30, they offered to try to get us in sooner. After a call, they sent us over right away. It was right around noon. They took us back around 1:30 and we saw the doctor around 3pm. He reviewed the MRI and gave us some broad conclusions. It was well defined, and free of the joint and tendon. It was soft tissue - no bone - and would require a biopsy to know more. But we were looking at a tumor of some sort. Then when they went to schedule the biopsy with the recommended bone and muscular tumor specialist, their "soonest possible appointment" was the following Tuesday. I kindly explained, for what seemed like the hundredth time that day, that we live 6 hours away, and can't just pop in and out for these appointments. Knowing full well that it was 4pm, I asked to do it that same day (Thursday). The nurse went back armed with information and came back with a better answer. She put us in as an "add-on" for Friday. This meant that we didn't have an actual appointment, but that we would have to call first thing in the morning to find out when they would 'work us in'. "Could be 7:30 AM, could be 7:30 PM". We met with the nurses who assist the specialist doing the biopsy to go over the details of what we would need to do. This, of course,would require another fasting on Margaret's part. Then again it was Holy Week. Speaking of fasting, we made hotel arrangements through the hospital concierge and decided that despite being 4:30 PM, maybe we should eat lunch.
The next day, our 6 AM inquiry yielded a 6:15 call back saying, "Come in now". As soon as we got to Same Day Surgery, they took us in and got the process started. Weigh in, measurements, paperwork, meeting with the nurses, anesthesiologists, and ultimately the specialist, and before we knew it, we were handing her off outside the operating room. After about 45 minutes they called us back to speak with the doctor. Since we were an add-on, the specialist had to go on to the next surgery right away, but we met with the surgical chief-resident who assisted. She informed us that while performing the surgery for biopsy (removing a small amount of the mass to use for testing and diagnosis), they found that it was a very well-defined avascular malformation or AVM. Knowing that, they chose to remove the entire mass right then instead of drawing it out longer. The results of the biopsy will be available in one week. Until then, this is what we were told after surgery:
- The entire mass was removed
- They are typically benign, but not always
- They can come back
- These manifest during fetal development
- The precise cause is unknown, but there is no evidence that they are caused by any environmental exposures during pregnancy
FYI- We were not able to find a lot of relevant info on-line, so don't expect too much out of a Google search. Some of the best info came from searching specifically on a hospital's website, such as the above links to the Cincinnati Children's Hospital.
1 comment:
My goodness Emily, I was right there with you while reading the whole thing. You really do have to speak up and tell them what you want or they do put you off. Good thing you didn't have to go back home and then drive all that way again. Not to mention another waiting and not know anything.
I will be hoping for the very best for the little one.
Nancy Jo
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