Tuesday, August 24, 2010

Good News & SPLINT is OFF!!

Yesterday the pediatric oncologist called to let us know that the margins around the surgery sight came back negative. YEAH...that means Andrew is hopefully CANCER FREE. They will do a bone scan in the next couple weeks and the monitor him closely. We were very excited about the news!! Praise the Lord!!!

Today Andrew got his splint off...wow, it was one of the hardest days yet for me. We had no idea what to expect, but when they removed the splint we were very surprised. Poor Andrew caught a glimpse of the surgery sight and turned green. When I looked at it, I was very sick to my stomach and actually had to leave the room. Thankfully Andy was there to take over for me. The sight where they did the surgery is going to take a lot of healing. Without being too graphic...it looks like something took a bite out of his leg. It sounds like it will always be kind of dented in and it will take 3-4 years to really heal and make the skin look normal. Although we are so happy with our good news, we are scared and anxious for this process. Andrew was very scared and emotional this evening over his knee. Our prayer is that we can say the right words to help Andrew deal with how his leg looks. It will stay wrapped for a while, but eventually he will have to work on not having it wrapped. Our adventure continues!!

Friday, August 20, 2010

Finally Updated

Andrew's Blog is Finally Updated...I have been keeping posts written on Microsoft Word and I finally had the chance to put them on the blog. My goal is to keep it updated with new news. You can also check out our Family Blog at http://vandenakkerfamily.blogspot.com/ to stay up to date. Thanks for following along on this journey with us and our BOY!!!

Welcome Home Buddy!!!

Andrew is home from the hospital. We got home yesterday afternoon. He is enjoying his special GREEN bed that grandma put together for him in the family room. He was blessed with signs, balloons, and goodies when we got home. He is feeling like a very loved boy. His leg is giving him some pain, so we are letting him just stay in bed. It is difficult for him to walk with the crutches and it hurts quite a bit. We will go on Tuesday to have the splint and dressing on his hip removed. He is in good spirits for the most part. He gets frustrated with daddy and mommy a bit, but that is expected knowing he is in pain. He continues to be a trooper!!!

Hospital Visitors

Surgery Day..Go TEAM ANDREW!!

Wednesday July, 18th Andrew headed in for his 2nd surgery. We got to UC Davis at the lovely time of 5:30 am. They started surgery at 7:30. It took about 3hours for the to complete the surgery. The oncologist removed a large margin around the place of Andrew's tumor (which had been removed in July). The plastic surgeon had to do a skin graph on his knee, so he has a large spot on his hip where skin was removed. The oncologist is hoping that he was able to remove all the cancer cells that were in his knee. We will have the final results next week, but our pediatric oncologist is hopeful that he can get a preliminary report by Friday. After hanging out in the OR for a while we got transferred to the pediatric floor for the evening. It was great to have family and friends visit us. Andrew has a giant splint on his whole leg and his hip has a dressing on it from the skin graph. He did well the first night even though he was very uncomfortable. My sister stayed the night with me, so Andy could spend some time with Luke and Alllie.

The Journey Continues

Tuesday, July 20 2010 was a day that we will remember forever. It started out as a wonderful day. I cleaned the house while the kids played and relaxed, Andy got home early from work, sold our flat bed trailer, and then we cleaned the garage. A completely clean house is proof of an excellent day for me. In the afternoon I headed to the gym to take a swim. When I got out of the pool I saw that Andy had called a bunch of times. I called and he said to just come home. When I got home he was very upset. He told me that Dr. Muizelaar had just called and had told him that Andrew’s tumor came back as malignant and it is cancer. This was a complete shock, since they thought the tumor was 99% benign. I tried to stay calm and I got on the phone to get the details. CANCER…I think I was in denial and couldn’t believe this was happening to our family. We told our families and then we headed out with the kids to a local street fair to meet up with my family. It was a very emotional time seeing my parents and sister. Andrew was also not feeling well on this day, so that seemed to make the news even more difficult. We tried to keep it together that night. We simply told Andrew that they had found something in his knee, but daddy and mommy would be working on things with the doctors. Well, the next few days were filled with more phone calls to doctors, tears, frustration, and prayers. We immediately sent out emails, texts, and facebook messages asking people to simply pray. We were, and still are overwhelmed by the responses and prayers we would receive. They are truly what helped us get through the next couple days. I would try and stay busy with the kids, but when I was alone I would breakdown. Andy would also find himself on his knees in our room everyday praying for healing for our son. So much frustration came when I’d call to make an appointment with the oncologist and there would be some type of hold-up with insurance. We got a lot of advice and referrals from friends and family over that week. Finally we were given an appointment for Friday, July 30. Waiting was the hardest part. Through the pathology report we learned it was called synovial sarcoma. Everything I read about it was exactly what Andrew had been going through. Thankfully the Lord blessed me with a sense of peace. I could have been frustrated and upset with doctors from the past who led us astray and completely mis-diagnosed Andrew’s knee, but those thoughts didn’t really cross my mind. I felt like I needed to deal with the challenge ahead of me and not look back. It wasn’t easy, but I knew it was the better thing to do. On Sunday we went to church for the first time since learning about our new challenge. We cried just about the whole worship set and it was difficult, yet encouraging to see some many friends after the service. After many hugs and explanations we left feeling so blessed. As we got to lunch I told Andy that we are so blessed to have such an amazing network of people around us, who truly care about our situation and even cry with us and for us. Monday was a special evening. Our life group all got together to pray for Andrew and our family. All 18 members of our group were there. They shared verses with us and we prayed for over an hour. It was so touching to be in a room filled with people who were truly lifting us up in prayer. I don’t think I will forget the sobbing I heard the whole time from the dads in the room who were pleading with God to heal OUR son. This group has been a huge support along with our own families throughout our journey. Two families in our life group have had cancer in their immediate family and they can truly relate to us at this time.

Our families have been more than supportive. Between watching our kids during appointments, joining us at appointments, and blessing us with grocer store trips, and food, they have been amazing. My hope is to journal throughout this process and one day hopefully put it all together on my blog. Each day I try to look for the blessings that come our way instead of the trials. Because of the awesome network of people we are surrounded with, I don’t think a day goes by that we aren’t blessed by a phone call, prayer, an email, a card in the mail, a care package for Andrew, a meal, bags of groceries, or even a buddy stopping to see Andrew. We have been BLESSED!!

The Journey of our boy's knee...

On Friday, June 11 we got news that we had been waiting a long time for, but wasn't quite prepared for. Andrew's knee has had a bad pain in it since the spring of 2009. We have been to many doctors and we were told for a while it was just a damaged nerve. He went through physical therapy, but not much changed. We finally got his neurologist to schedule an MRI. When we got the results that Friday we were glad they had found something, but scared...Our pediatrician delivered the MRI results to us and seemed to act as if it was alright. They had found a "neo based neuroplasm" in Andrew's knee. He said they would probably want to remove it, so they called and got us in with the ortho doctor that same day. They acted like they didn't know what this was and sent us on our way. I headed to the park with the kids and Andy went home to get ready for work. He called me while we were at the park to let me know that everything he could find on neoplasms referred to cancer. My heart sank and I literally had to get off the phone with him so I could chase the kids around the park. My mind raced and raced and I just wanted to leave, but knew I couldn't explain that to the kids. I got home that afternoon and the kids went down for a nap and Andy and I had some time to process things. From this afternoon on life turned a bit crazy. We had doctors appointments almost daily and I felt like I spent hours on the phone. We battled over what type of doctor would even take care of him. I drove to Shriners and UC Davis with Andrew just so I could go in and speak to someone face to face, but the only thing I would get was "maybe you could get in sometime in July." No one seemed like this was an urgent matter, but we felt it was. The following Thursday our friend Chris got us in with a neurosurgeon who explained it all to us and was willing to do the surgery the next Friday. He also told us that the "nerve tumor" would most likely be benign. This was a huge weight off our shoulders. At the same time our neurologist was telling us how serious this surgery was going to be and he was ready to sent us across the country to get it done...insurance was just a slight problem. Two days before the scheduled surgery we got a call that insurance wouldn't cover the doctor doing the surgery and they were rerouting Andrew to orthopedic doctors (who we already knew couldn't help). We were driving home from a camping trip and I made Andy stop at the insurance office so I could talk to them face to face. Thankfully I was able to explain everything and it was apparent to them that we had tried so many things. The lady got us connected with a UC Davis doctor. We were so thankful for Dr. Circillio (who was initially going to do the surgery) because he gave us the key information we needed to fight for what we knew Andrew needed. Finally on June 30 we met with the head of neurosurgery at UC Davis. He discussed everything with Andrew and I and we agreed to do surgery. July 16th will be the big day. We are praying that there is minimal pain and that the tumor is not entangled, which means they would have to cut the nerve and could possibly cause more pain. We are thankful that this "jellybean" (as Andrew and I called it) will be removed and Andrew will not have to deal with the pain it causes him.
It has been quite the journey with this little 6 year old knee...our boy has been a trooper. He asks almost every morning if he has to go to the doctors today. We have been able to go on our little camping trips, but when we are home I feel like we are in doctor mode. I feel like Andrew has missed out a bit on summer vacation because we have spent hours in different doctor's offices. I let him pick a favorite drink to get everytime he has to go to the doctor. He chose a Vanilla Bean Frappacino, which I will gladly buy him for being such a brave and patient boy.
Andy and I have remained hopeful during it as well. We both have felt a good peace even though we did have many moments of frustration. We have felt so blessed by our families and friends. Our life group immediately started bringing us meals and took the kids and I out to lunch. So many people offered to watch the kids and most importantly we would receive email after email about people who were praying for Andrew. I have told Andy over and over again how I don't think it would be so easy if it weren't for the network of people who we are surrounded with. We felt so BLESSED each day.
Although we aren't done yet, I feel a big relief that a surgery date in on the calendar. I'm sure there will be more to this story as the weeks go by. For now I will continue carrying around the large envelope of MRI films and a manila folder with at least 20 doctor's names and numbers on it and medical terms I've never heard until now. These have become my new attachment this summer and I never leave home without them.
Our prayer for our Andrew is that he will have strength and courage through all this. He is very nervous about having surgery. We keep talking about how wonderful life will be when he won't have to worry about bumping his knee anymore!!