The first 5 years after Jenna's diagnosis would be some of the hardest years in my life. When you first get a diagnosis from the Doctors it is like learning a secord language and after hearing that she had Dermatomyositis it might have been a little easier to learn a second language! The first week she spent in the hopital they pumped her full of steriods! In the months to come I would see the physical & emotional changes that these drugs would do to her. She had to have physical therapy and occupational therapy for the first year after her diagnosis to help her strengthen her weak muscles. Thank God we knew a good PT because I knew that Jenna would be in good hands with Michele. Michele had been Jordan's PT for years prior to Jenna getting sick. The first few months I found it hard to even get out of bed. I would say to myself..."WHY" all the time. Why did it have to be my daughter? Why did I have to be dealing with this? Kids are only kids for such a short time and spending that time in a hospital or a Doctors office is no day at the beach. By the spring of 2005 she was still taking her oral steriods, prilosec, tums, taking plaquenil for the rash on her skin and getting IV solumedrol treatments and now we were taking on a new drug...Methotrexate.
It is so sad to see your child so sick. There were days when she could not even get out of bed. We were told by her nurse that she qualified for a wish from the Make-A-Wish Foundation in May of 2005. My reaction to that was..."she qualifies for a wish?...does this mean that she is going to die?" It was at that point that this illness had hit me. None of us know what our future holds, but I know that I was not wanting my future to be without my daughter. She was so blown up from all the steriods that she was having some pulmonary issues. We had to see a pulmonologist and have a PFT test, a sleep study and a CT scan of her lungs done...Results...more meds! Advair, albuterol and singulair on top of what she was already taking! She did have some improvement with breathing and her coughing was now under control.
The summer of 2005 would be full of so many emotions, some up and some down. She got her wish to be a princess like Cinderella. The Make-A-Wish foundation gave her the greatest wish any little girl could ask for. They sent the whole family to Walt Disney World for a week. We got to stay at a place called Give Kids the World. There are no words to explain what that week ment to not only Jenna, but to our family. It was the first week that we were able to just be...be some place and not think about doctors & everything that goes along with it. She got to have dinner with Cinderella and she had a dress just like her. We did as much as we could that week, but she was still so sick and not able to go the whole day without a nap. We did all of the parks and had so much fun as a family. Jenna also got to go to summer camp that summer. This was no ordinary camp...this was a camp where there were other kids that were dealing with similar health issues like Jenna's.
Between 2006 and 2007 the Doctors were slowly lowering her oral steriods, taking other meds away one at time and she was down to once a month on her IV solumedrol...WOW! She was getting stronger each day and was back in school with all her friends. By December 2008 she was off all steriods and methotrexate!!! My little girl was on her way back to being the drama queen that I once knew. LOL. We were seeing the Doctors less and less and that was such a great feeling. When I think back to 2004 before we had a diagnosis everything was there right in front of me...we just couldn't put the pieces together. I hung onto so much guilt for so many years and it wasn't until she got better physically that I was able to get better emotionally. I had a wonderful support system that was there for me but I always felt alone. I always felt that no one really knew how I was feeling and no one could take all of the pain away. I got through some of the darkest days and that is a place that I never want to journey to again.
2009...Jenna was in the 5th grade! It was her last year in elementary school. We were not seeing her Rheumatologist as much as we had been. Physically and emotionally we were in the best place we had been in 5 years. We had our appointment set for March 8, 2010 with her Rheumatologist that was going to be the day that we were discharged. The day that we had been working towards for all these years. In January of 2010 Jenna started getting this spot on her belly, it was pink and about the size of a dime. What in the world was this? For about 2 weeks we watch the spot and it kept getting bigger and bigger. I went ahead and made an appointment to see her pediatrican. I didn't over think this, I didn't even panic, I just wanted to know what it was. We are now at the beginning of Feb 2010. We go and see her Doctor and do you think he could tell me what it was? No...LOL leave it to my family to have something that no one knows what it is. She had an x-ray of her abdomen due to the fact that this spot was now larger than it was 2 weeks prior and it was firm to the touch. They couldn't find anything. So we wait. This spot was growing before my eyes. We went and had an ultrasound done. That showed inflammation or resolving hematoma in the subcutaneous tissue...ok so now what? From there we went and had a CT scan done. That showed inflammation in the subcutaneous tissue as well. So back to our pediatrican we went! I know that he must get so tired of seeing me. LOL. At this point the only thing that he could suggest was to see a surgeon.
We made our appointment and got in to see this wonderful surgeon. While I was waiting to be called back to see him I decided to take things into my own hands...sometimes that is not always a good thing. Jenna's rheumatologist was right next to the surgeon that we were going to see...cowincedence??? LOL I figured let me see if the nurse was there and have her come and take a look at this "spot" on Jenna's belly. She came over to join our little party that we were having and she had said that she had never seen this in any other patient with dermatomyositis. The surgeon had suggested that we get a biopsy and go from there. On Feb 26, 2010 we spent the day at All Childrens hospital having a biopsy party. I would ask myself..."why?, she has been doing so good and things have been so well, why give her something else to deal with". We didn't have to wait long to get her diagnosis...Lymphoplasmacytic dermatitis and Lobular Panniculitis! Ok...something else we have no idea of what it is! Panniculitis? What in the world is that? Her having the Dermatomyositis was a 1 in a million shot, so what are these odds? We have come to learn that this is a VERY RARE condition. There are not even 30 cases reported. Great, that is great...time to learn another language. What we would soon learn was that this issue would only get worse. I am going to leave off with that for today and pick this up another day. At least I have most of you caught up to speed now. I should of started this a long time ago. It is so hard playing catch up LOL. I will get into more detail on the next blog.
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