Thursday, March 5, 2015

What really happened to Morgan's leg:

Last Sunday at church Maylee told her primary teachers that Morgan had fallen on her bike and that was why she was on crutches. Technically Morgan did wreck her bike and got pretty bruised and scratched up days earlier but here is the true story. Last fall during soccer season Morgan started to complain about pain in her right thigh. We looked at it and could see nothing. It seemed to come and go, getting worse when she was running or physically active. Because it wasn't the knee, hip, joints or bones, we figured it was growing pains or a pulled muscle. So we treated it with icy hot, pain relievers and hot/cold packs. She complained periodically and so Steve started working with her on stretching exercises for that thigh. In January Steve noticed the difference in her right and left thigh muscles. In the right one (where the pain was) the muscle was doughy and the left one was nice solid firm muscle. He showed me and I decided right then to get her to the doctor. The first doctor we met with was Dr. Tovey, he is our family doctor. I scheduled her and Maylee for an annual physical and then talked to him about Morgan's thigh. He said, "Yes, that does sound like growing pains." (which made me feel better for not taking her in immediately) I had him feel the difference in her legs and as soon as he touched her thighs, he said that he wanted us to see a specialist as soon as we could. The office was great, they gave us referral information and made sure our insurance covered the new doctor. Ten days later (January 26)we met with Dr. Machen at Utah Valley hospital. He is a pediatric orthopedic surgeon. We met with him and his student doctor. They were really stumped because of the location of her pain. She got to try on some really funny looking pants! They were a little too big but Morgan had fun modeling them for us.
After twisting, turning and manipulating her legs they asked us to go and take x-rays. We walked down a few hallways to get some nice pictures of Morgan's whole lower body. After that field trip we went back to the doctor's office where the results were already on their laptops. The x-rays didn't show anything. Dr. Machen stated that he could hearing a clicking in her right knee when she moved it so he would like to have us do a MRI. I was starting to get a little nervous now thinking about all of these costs and still no answers but we wanted to figure out the problem and end Morgan's pain. We were able to schedule the MRI for the following day (January 27). They told us that it wouldn't take long and that she would just have to hold still for 20 minutes. So we decided she would not need to be sedated. Morgan was still keeping me laughing during all of this. While we were silently waiting in Dr. Machen's office she said, "Awwwwkward silence. You know whenever there is an awkward silence that a chipmunk dies right?" The next morning while fasting we got Morgan to the imaging building and got registered. The radiology tech came out and explained things to us. At this time he did mention that they were doing 2 separate MRI's-one would take about 45 minutes and the other would take 1 hour and 10 minutes. Quite a difference from what they told us the day prior. They took Morgan back and left me in the waiting room. For just over two hours I sat and tried not to worry. In the meantime Morgan got to watch a movie through some special goggles and headphones. She only had to go "into the tube" up to her waist. They told me that she did amazing, holding very still and only requesting to stop once so she could cough. As soon as we were done I hurried and fed her and got her back to school and then headed to work. We had to wait two more days (January 29) to hear the results at Dr. Machen's office. I was extremely unhappy about the way he gave us the results. He started talking about a hitch in her knee which was why he heard the clicking noise but that it would never cause her pain. Then in an off-handed manner he said, "But you knew about the mass right?" What?! Of course not, everyone knows that is the reason you go back to the doctor-to get the result. I swear in that moment my entire body turned cold. No one ever wants to hear that their 9 year old daughter has a mass growing in their body. The doc pulled up the MRI and showed it to us, then started talking about tumors and that he wanted us to see a different doctor at Primary Children's hospital. They gave us info on the specialist and I hated the way they were all looking at me. I could see pity in their eyes and just knew they were thinking, "Thank heavens this is not my child!" I wanted to scream, "stop being so nice! There is nothing wrong with my daughter! She is going to be fine!" Irrational? Maybe. Since this was the third half day that Morgan had missed school we hustled to get her back. On the way to her school she said, "Mom, what is wrong with my leg?" I told her that they found something in there but we didn't know what and Dr. Machen wants us to see another doctor who will do tests to find out what it is. I held it together and didn't cry, I was the brave mom that I needed to be. However, as soon as she was inside the school, I broke down. Bawling I drove straight to Steve's work. When I got there I texted him and asked him to come outside. One of the hardest things I have ever had to tell my husband is that our daughter has a tumor and that she may have cancer. We cried and made some plans, then I pulled it all back together again and went to work. I figured if I stayed home I would just worry and besides I might need my sick and vacation leave for future doctor visits. That day we notified our family what was going on and asked them to pray and fast for Morgan. We decided not to tell friends, neighbor and ward members until we had some answers. That Sunday, February 1st was the first time Morgan really ever fasted. One thing that my mom told me was that we could pray that we could get answers fast, so I prayed for that too. I felt an overwhelming peace that Morgan would be fine, I didn't know what all she would have to go though but in the end she would be ok. Steve gave father's blessings to Morgan, Koby and I. We were able to get in to see Dr. Randall at Primary Children's hospital on the following week just 5 days later. Dr. Randall is a pediatric musculoskeletal oncology surgeon. When we got to the office in SLC the room was packed. The white board behind the desk said that they were seeing 111 patients that day and to please be patient. We met first with Dr. Randall's "fellows" and they asked to do two more x-rays directly on the thigh. She got another cool pair of shorts for that. We waited for a very long time and finally got to meet Dr. Randall. He walked into the room introduced himself and said, "That is not a tumor. It is called vascular malformation." He said that they see this all the time and then he described it as a clump of blood vessels in her thigh muscle. He said that there are several treatments and that he wanted to have his partner look at the MRI and then they would decide on a treatment plan. Morgan and I were grinning from ear to ear and high fiving each other. It was so amazing to get an answer so quickly and for it to not be such a bad answer as we expected too. Dr. Randall said we would hear back within a week. Morgan and I were so excited when we left the hospital-she said that Heavenly Father answered our prayers and everyone's fasting for her worked. I agreed! Minutes later on the drive home, we got the call back. Dr. Randall said that because of the location they had decided that the easy procedures would not work on Morgan and they suggested completely removing the mass. He said there was no rush and we could do it whenever we wanted. In fact, he said if we wanted to wait and just treat the symptoms we could but they suggest surgery to have the mass removed. I said lets just take it out, then she wont be in pain and it will be behind us. He said that they had a cancellation for Thursday (two days later!) so we scheduled it. Unfortunately Morgan got the flu that evening so we had to reschedule and the soonest we could do the surgery was 23 long days away. Those three weeks were pretty painful but we tried to keep busy and not think too much about things. We did get paperwork from the insurance authorizing the surgery which sort of freaked me out because it said the surgery was removal of tumor. We didn't tell Morgan that part, Steve and I just worried a little about it on our own. We prayed and prayed. On February 23rd Morgan turned 10. We had a quite party at home with her favorite foods and a new bike. She got to ride that bike for three days before she had her surgery. The day prior to surgery she did wreck her bike and got pretty banged up. On the 26th Steve, Morgan and I headed up to Primary children's hospital during a snow storm (only the 2nd time it snowed the entire winter!). We had to be there by 12:30 to check in and the surgery was scheduled to start at 3. Poor Morgan was fasting. She told us that every second was one moment closer to food. This is a picture we took while waiting.
We moved from room to room all day long. We started in same day surgery registration room, got registered, met with nursing staff, changed Morgan into a hospital gown, then moved into the waiting room. Before the surgery both doctors came out and talked to us. We found out that Morgan was actually having two procedures. Dr. Arnold was going to do an ultrasound on her thigh and mark the exact location and depth of the mass. He told us that until they knew exactly what it is the insurance company would call it a tumor but he felt positive that it was vascular malformation. Dr. Arnold was going to place two wires into her thigh to mark how deep they would need to cut. Because they would be cutting out part of the muscle they didn't want to cut out any more than they needed to and yet they needed to remove it all. He said that in the muscle all of the tissue looks the same. The second procedure would be done by Dr. Randall who would actually cut it out. All of this would occur after Morgan was sedated. We walked down a hallway until we came to a nice fat line, at that point Morgan turned one way and Steve and I had to walk the other way. Pretty much torture. Steve and I found the parents waiting room. We were told that the surgery would take about 2 hours so we settled in to wait. Just after an hour, Dr. Randall's fellow came in and told us that the surgery was done and that it went well. He said that the docs would come and talk to us soon. We waited another 20 minutes and then they took us back to the recovery room. Morgan was pretty groggy but she woke up pretty quickly. We were moved to post-op and Morgan was given sprite and crackers. She got to watch tv and relax while they monitored her.
She whispered in my ear that she wasn't wearing any underwear. Apparently they removed them when the swabbed her from ankle to hip with iodine. She was doing really well and was in very minimal pain so we got her dressed and ready to head home. As we started to go they decided that they did want Morgan to have crutches so we sat back down to wait for the arrival of the crutches and the physical therapist to give her "crutch training". She picked it up really fast and we left the hospital shortly after 6. On the way home Morgan started getting a little bit car sick but she just fell asleep and when she woke up she was fine. In fact, she insisted on going to the church house to watch Koby's basketball game. While we were at the hospital Maylee had her dance recital so Koby picked her up from the babysitter, took her to dance and then out to dinner. When it was time for him to go to his game he dropped Maylee off at Uncle Matt's house. So we collected Maylee and went to watch basketball.
We did stay home on Friday to recover but Morgan was hard to keep down. I kept trying to get her to stay down and not move so much but she didn't really listen. She was given a narcotic but hasn't needed to use it. We have kept her pain minimal with Tylenol. She HAD to jazz up her crutches so we got her some duct tape and she made them look awesome.
When we last met with Dr. Randall right after surgery he told us that it would take about a week to get the biopsy results. Yesterday on March 4th we finally heard back and the mass was benign! It was a vascular malformation and not a tumor! We were so happy and feel so very blessed. On Sunday (1st) Morgan stood up at church and bore her testimony and it was so moving! So many people were in tears and complimented her through out the day. Morgan said that she believes in the power of prayer and that sometimes our prayers are not answered in the way we want them to be, but they are always answered in the way they need to be. Honestly it was so beautiful! One last thing that we experience through this trial was enough to strengthen our whole family's testimony. About a week before surgery a man that we know stopped by our house and told us a story about when he was struggling financially and someone showed up and gave him a check. He said it was hard to accept it but he realized that it was an answer to his prayers. He also said that he and his wife vowed that they would one day pay it forward and they felt prompted so strongly that we needed help at this time. He gave us a check with tears in his eyes. It was a lot of money and it really helps us with our medical bills. However, that was not what made this gift so special. It was knowing that our Heavenly Father loves our family so much that he was willing to prompt someone to help us. After he left we sat at the kitchen table with tears in all of our eyes (except Maylee who just thought we were being weird). What a blessing this was to have tangible proof that we were loved and that our Father in Heaven was very aware of our needs and hadn't left us on our own. We have vowed to one day pay it forward. Morgan and I have decided to start doing this by making and collecting blankets to donate to Primary Children's hospital. Every child that has surgery gets to pick out a blanket to take home with them and the one Morgan got gave her such comfort and made her feel special so if we can do that for someone else, we will. So that's the true story of what our 2015 has been like. A lot of ups and downs but we have pulled together and made it through with the prayers, faith and love of our family, friends and loved ones.