3 years and counting

princess4 and her oncologist at her last chemo treatment

This time three years ago my baby girl was recovering from surgury where a tumor was removed, a port was put in to start chemotherapy treatments and a bone marrow test was done. Last year at this time I wrote a letter to princess4 that I am keeping in a scrapbook along with other pictures and details because I want her to know how blessed she is and because I don't want her or I to forget all of the little extra special blessings that God did for us during that trial. Below is the letter. It is a long one sorry with lots of details!

March 1, 2007
Dear Princess,
Two years ago today was a big day for you, and for all of us. Two years ago we were told that you had a tumor behind your heart attached to your chest wall. In some ways this was the scariest thing I had ever had to deal with in my life in other ways it was a relief, to finally know what was wrong with you, you see you had been sick since January first and we didn’t know what was wrong. You had what the doctors were calling nistagmas (which means your eyes were dancing back and forth) and ataxia (which means you had a slight tremor and when you tried to take a step you fell). We first thought this was all brought on by an ear infection but the Lord kept putting it on our hearts to keep pushing it with the doctors; that there was something else there to find. I knew that the Lord would lead us in the right direction to find the right doctors and that his timing is perfect, but it seemed like it was taking forever to find out what was wrong with my baby girl. I praise God for Dr. D who spent the extra time and effort to examine you and for his genuine care and concern for you. Anytime we had any question he always stopped what he was doing to talk to us. This is a very busy man, the only doctor in town, who is usually nearly impossible to get into without an appointment a week in advance, and he gave us his and his wives cell phone numbers so that we could get a hold of him anytime we needed him. It was a scary time but God gave us all a peace during this time. I think everyone in your family felt it. We knew that God loved you more than we did and that He had you in His loving care, and that everything was going to be all right! During the time before we knew what was causing all of this, your little body was going through some horrible things that none of us could understand and probably never will. We now know your body was creating antibodies to attack the tumor but they were also attacking your brain and this was causing the symptoms. It was so sad to look at you, knowing that you were such a bright, happy, loving little girl and now you were unable to walk and talk. You were having trouble eating and you were having what I guess we can describe as night terrors (though we don’t really know what was happening at night because you couldn’t tell us). You would wake up screaming and crying inconsolably, we just felt so helpless. We knew the only thing we could do was to pray, so Daddy and I went to your bed and laid our hands on you and just prayed for God to ease your pain or to just take this…whatever is was, from you; if it be His will. We knew that He had a plan for your life and that He knew better than us, but it was hard to see you suffering. Also during this time Mommy and Daddy found out that you were going to have a new baby brother or sister. Again this made me want to question Gods timing, how could I handle a new baby and a sick toddler, but He just kept putting on my heart scriptures that would reassure me, especially Romans 8:28 “And we know that God causes all things to work together for good to those who are called according to His purpose”. Now I don’t know what we would do without J2, do you? He is our live entertainment!! By no means did I have to handle this all on my own though. Your Daddy was wonderful, you and he have such a special bond, that I can’t comprehend, it amazes me how much you love each other and understand each other and how well your two have always communicated, even when you couldn’t talk. No matter what was going on, your Daddy always made you feel better. He could just hold you and rock you and soothe you like no one else could!! Even now that you are all well, he can deal with you being a strong willed three year old, tons better than I could ever dream of. It is because of this special bond that God gave you two, I pray that you can hold onto this bond and that he can always be there for you in the ways that a mom can’t. Also Grandma and Papa and Gram were always there for us during this time. They spent many a sleepless night with me trying to console your when there was nothing we could do. Grandma and Gram took turns staying with us during the nights that Daddy had to work. Papa took care of J6 a lot while we were making countless trips back and forth to Childrens Mercy. J6 was so good during this time too. I am so thankful to God for the sweet loving boy that he is. I know it was scary for him but he handled it like a pro. He even enjoyed visiting you at the hospital, he liked going to the play room more than you did at first, but by the end of your treatments you were ready to play too. Everyone in the family was so kind, and so good to do anything they could, all of your aunts and uncles and cousins and grandparents love you so much and were praying for you daily. The community and especially our church family were also amazing during this time. Mommy and Daddy’s sunday school class brought us meals for a long time and were also praying for you daily. The love that we felt during this time is indescribable. There have been so many people who have shared with us what a change in their prayer life they had because they were praying for you morning, noon and night. I know that the Lord used it to bring me closer to Him. I HAD to lean on Him and draw my strength from Him or this would have been impossible to endure. God did use you and your illness to bring glory to him! Praise the Lord!! The Lord led us to your neurologist Dr. A who researched and found something that fit the symptoms you were having and decided to test you for Opsoclonus Myoclonus Syndrome. This is when the scan came in where they found your tumor. Your oncologist is Dr. L and she was wonderful with you right from the start. She was so good and gentle with you. She sat down with us while you tumor was being removed and talked about treatments. There was a study of children with OMS that you could participate in if we chose to, there were two different treatment options that you could be given. The one that you were chosen for was the one with the least amount of medication, which if it worked would be an answer to prayer. If you could get better with fewer instead of more drugs that would be great. You had six months of chemotherapy and a steroid therapy, also some precautionary antibiotics to protect your weakened immune system. When you started going through treatments we started to see a change in you very quickly. You were sleeping through the night again, which was definitely and answer to prayer for your tired mommy! And before we knew it you were trying to take steps again. Mommy couldn’t change your diapers or clean up spit up for 48 hours after your chemo treatment so when Daddy had to go back to work Papa came and did diaper duty. You and your papa have always had a special connection too. You are really a papa’s girl! You made it through your six months of chemo better than anyone could have imagined. Your blood counts stayed good through all of it and you were such a little trooper! They told us you would probably loose your hair (not that you had a lot to loose) and after all the things you were going through and as silly as it was I was worried about it. But the Lord took care of us above and beyond again and you were (and are) one beautiful curly haired little girl! Another example of Gods perfect timing is that your last treatment was in August and Jaden was due in September, so you wouldn’t have to be making any over night stays for treatments after the baby was here. Throughout this trial it was unmistakable that Gods hand was in everything that happened. Even now you are growing and changing and learning to talk more and more and getting such a personality and I can see God working in you. You are learning to pray and it does my heart good to hear you ask for me to pray with you. My prayer for you is that you come to know and love God in your heart and will seek his will for your life and even though you will never remember this trial in your life, that He will use it and you for His glory. I don’t want this letter to make you think “poor me”, or “poor mom and dad” but instead to remind you of Gods great power and of the healing He did on your body. I want you to know how blessed you are and how loved you are. You are our little miracle and Daddy and I praise God every day for giving you to us!
I love you,
Mommy xoxox

We go back next week to her oncologist for her yearly evaluation and, I feel sure, for another good report of a clean bill of health! We will let you know what we find out!