Syd Running at 5K

 

A letter from the Silbaughs from 2014:

Calliope (or Calli for short) was born on Easter April 8th, 2012, a happy (and big) baby girl. She lived up to her middle name - Joy - and was always pleasant and rarely fussy. She grew and developed as babies do, and there was zero warning of any problems.

On the evening of August 28th, 2012, she became extremely fussy and cried constantly until Karla managed to get her asleep around bedtime. Something was definitely bothering her. She threw up all that night and was very lethargic the next morning, by noon we knew there was a serious problem and had an emergency visit with the pediatrician. While there her left pupil dilated and she was rushed with Karla to Hershey at the advice of our pediatrician (this was from camp hill, they passed two other hospitals on the way). There she was diagnosed with a large mass in her skull that had shifted her brain a good ways off center and she went into surgery that evening to remove as much of the tumor as possible. The neurosurgeon was not able to get all of it the first surgery and from what we understand we were close to losing her that first night. She had a second surgery a week later and praise God he managed to get it all. 

During that first week we met Margaret Rosa who became our social worker. We learned a good bit about Four Diamonds and eventually THON during the next month that Calli was in intensive care. We also learned that the tumor was malignant, and after a long wait from testing we learned that she had an extremely rare form of cancer, one of only 50 documented cases. Yes, you heard that right. Home life was obviously impacted in a major way, but Karla and I are blessed with mothers that were each willing to drive out, every other week from the Indiana/ Johnstown area to help at home and with our oldest daughter Sydney. This was all very hard for her to comprehend, and she spent a fair amount of time back in Western PA. She had just started early pre-school and while she did not always want to go, it did serve as a distraction for her. But as Karla did not want to leave, Syd saw precious little of Karla (and Calli) and it took its toll. 

Calli was home for about two weeks and they were tough. She was not herself and we needed to be careful of her scar and keep up with her many meds. She started her first round of chemo in October. It was scary to say the least. It did not start very well as first she needed to get a broviac put in that never seemed to draw blood right from the moment it was first put in. Calli was not allowed to leave the hospital during those stays until her white cell count came back up from zero as being an infant her immune system was not yet fully developed. Our stay was on average 24 days, in November it was probably around 30 due to a complication. That month we spent Thanksgiving in the hospital (Syd spent the week back west), but we did make it home for Christmas and New Years. Karla stayed nights in the hospital and I spent the day there while Karla worked. We had some help from my Aunts who live in the area to watch Calli during her stay. The chemo did not make Calli as sick as we expected, and the nurses were all amazed at how well she handled it all and never seemed to miss a beat. She rarely even lost her appetite. As crazy as it sounds, we got a routine down and hospital life started to seem a little normal, a little. There are many stories and details during those six months, but in mid-March we were able to come home for good. There have been many clinic visits and other appointments since, but Calli is doing well and seems to be developing normally. 

We have gotten through this with our faith, our family, and the support given by the Four Diamonds. Initially the Four Diamonds gave us the peace of mind, that through this we will not have to worry about the financials when it comes to Calli's care. That was amazing in that we were able to focus solely on caring for her and seeing that she got the treatment and care she needed. Even the small things like meal cards for when we were at the hospital were a huge help, as we practically lived there, and eating at the cafeteria 3 times a day would have been a huge burden. 

Life has been getting back to normal-ish. There is now only an appointment or two every other month, Calli is down to two meds (from I think 6 or 7 at one time). We do tend to have mini panic attacks at anything abnormal from her behavior wise and tend to be a little more guarded about her general health, but we have also started to try to do more with the girls "fun" wise and step out of our comfort zone. We are taking trips and doing more that we would normally write off as being too difficult with a 2 and 5 yr old. 

Calli’s chemo was finished in mid-March, 2013 and she also got a stem-cell rescue/ transplant. She has been doing very well and her quarterly MRIs have been clear thus far. She is growing and developing well and we are very grateful. The outpouring of support and prayer has been amazing, and we are very grateful for every last bit.

Silbaugh Girls