The stillness of the night

With five boys in the house it is very rare to have stillness. These precious boys are constantly moving and even at night someone always seems awake. Tonight has been different. Mama has been awake not just that I'm awake lets go back to sleep but the I can't even close my eyes.I have been wide awake praying and seeking. We heard back from St. Jude today and brain surgery is scheduled for Sept. 9th.

Brain surgery. My two year old is having brain surgery.

I still can't wrap my mind around it. I'm sitting here watching the sun come up and writing a blog. I don't blog. I'm the one to read about other people and pray for them. I pray for all the hurting Mothers who are going through unbearable times, but here I am. Here I am with this storm brewing.  The storm has been brewing for a while  and today it started to rain. The good thing about storms is they end and the sun shines again. We know that the sun will shine on the streets of Jerusalem.

I can't help, but be thankful. Tzadok is having brain surgery and yes he will need to endure six weeks of radiation, but his survival rate is high. Right. They say 80-90% . I know women that hear their children have little to no chance. So yes I'm thankful. As I have been laying here awake all night praying and pondering I realized that none of us never have a 100%. I have always known it but now it just seems more action than words now. It's one thing to say it and another to live it.  Our hope is not in this world and never will be. Our hope and faith lay in something much greater than our minds can comprehend.

I'm sure there will be very little sleep over the next few months. I'm sure I will see many sunrises and I'm going to be thankful for every one of them. I'm choosing to praise the Father everyday for the movements of the day and the stillness of the nights.

Please continue to pray for our little warrior who has a very physical battle he must fight. We know the LORD goes before him.

Rachel

The Waiting Game

We know that everyone is very concerned for Tzadok and that everyone is needing an update, so here is where we stand today. Rachel and I have tried to seek out every different treatment option because we feel that Tzadok deserves the best care for the tumor and he needs to have the best possible quality of life after the treatments are completed. All this has led to a period of time we've come to call the "waiting game." We know that it was the Father's will to reveal this cyst to us, but we haven't been very clear on when to act on this information or to which path of treatment is the right path; however, we now feel in our spirit that seeking treatment with St. Jude is the best overall option for Tzadok. With that being said, we have been trying to contact the neurosurgeon's nurse to schedule the brain surgery for several days, but we have not been able to reach her thus far, which is mainly because we cannot contact her directly so we are relying on messages from other nurses to reach her. One thing, however, is for sure. The surgery will be scheduled for sometime in beginning to mid-September. I'm sure everyone is curious what the days, weeks, and months ahead of Tzadok will look like, so here's a brief list of what we know about the immediate future. First, Tzadok will go to St. Jude for brain surgery. Then he will stay in the hospital for seven to ten days, in recovery. After that time, we can come home for ten days and then we will have to return to St. Jude for two weeks of solid testing and research. Immediately following this two week period Rachel, Tzadok, and the baby will fly down to Jacksonville for a few days of preparation, and then they will come home for another ten day period, while the doctors prepare the machines. Finally, we will go as a family to Jacksonville and begin Tzadok's treatment, which will last for six to eight weeks. This is our immediate future and all prayer's for successful surgery and treatment are our top priority. However, our living arrangements have not changed and we are still very concerned and stressed about how we are to care for a recovering son in the midst of all this turmoil. For now it seems that we will have to be content with waiting for the Father's provision in this area, and as always please keep Tzadok in your prayers he is a precious boy facing a giant mountain.

-Jeremy

Nashville vs. Memphis or Aggressive vs. Conservative

When we arrived at the pediatric neurosurgeons office the following week at Vanderbilt Children's Hospital in Nashville, we were still holding to the belief that there was a flaw in the CT scan or that there was nothing seriously wrong because we left Kansas with a list of possibilities ranging from a closed cleft pallet to malignant cancer. If it was a closed cleft pallet, then there would be no need for surgery, radiation, or chemotherapy. So, we walked into the doctor's office with a cautious confidence that this mass was nothing serious and that we would be going home to miraculous great news; however, that was not to be the Father's design. Immediately upon entering the room, the doctor told us that our son had a type of benign tumor called a Craniopharyngioma. In English, that means that there is a tumor most likely connected to the pituitary stalk of our son's brain, which can cause a variety of nasty side-effects if left untreated such as: blindness, vomiting, nausea, dehydration, uncontrollable appetite, stunted growth, behavior issues, hormone deficiencies, and ultimately death. If that was not scary enough, the doctor strongly suggested a complete resection of the tumor within the next two weeks. At that time our minds were blown, we went from hoping for a closed cleft pallet to a benign tumor within the brain and surgery on the horizon. During this visit we were also informed that our son would be on complete hormone regulation for the rest of his life and that he would have a disorder called Diabetic Insipidus, which is another nightmarish term meaning our son would have extreme difficulty regulating the water and salt intake and outtake of his body. To clarify, a complete resection means taking out the entire pituitary gland of the brain along with the tumor, which is why there would be a diagnosis of Diabetic Insipidus and a need for complete hormone regulation. Another problem is if the doctor was to leave in one cell from the tumor our son would have to undergo radiation therapy along with the radical surgery. We were frightened to say the least when we left the surgeon's office that afternoon. In all fairness, the doctor relayed to us that he was a believer in an aggressive approach when dealing with this type of brain tumor. That sparked a thought that there may be a conservative option opposed to the aggressive option. After seeking wise counsel, from several families that are strong in the faith we decided to pursue a second opinion from St. Jude Children's Research Hospital in Memphis, Tennessee. We read many of their studies and had discovered that they believed in a more conservative approach when dealing with Craniopharyngiomas. Unknown to us at the time, St. Jude deals with more Craniopharyngioma cases then any other hospital in the U.S., approximately 1 in 5 children diagnosed with Craniopharyngioma find their way to St. Jude. So, just what is the difference between St. Jude and Vanderbilt? The conservative approach would still have us do a craniotomy, but instead of the full resection a catheter would be placed inside of the tumor and it would be drained, which would relieve the pressure from the surrounding areas of the brain. After that, there would be a slew of tests that we are not fans of, a permanent catheter implanted in the brain, and finally a six week trip to Jacksonville, Florida to undergo proton therapy. Proton therapy is essentially a more effective form of radiation, but is still in the experimental phase. Tzadok's life after the conservative approach would be very similar to that of the aggressive approach in that he would be on hormone supplements for the remainder of his life, but he would most likely avoid the terrible diagnosis of Diabetic Insipidus. In either scenario, he has an 80% chance of survival, but heavy risks from surgery and/or radiation could have serious effects on his life following treatment. Again, the quality of life after the Craniopharyngioma is the concern. The location of this tumor is a problem because treating this tumor can ultimately cause many of the symptoms they hope to prevent through treatment. Needless to say, we have struggled with which option of treatment we will pursue because it's like choosing between terrible and bad. Neither one sounds good. We have went so far as to seek out a third treatment option called gamma radiation, which was even less appealing than the two previous choices. So, here is our dilemma two months after finding out that our son has a brain tumor. Aggressive or conservative? All we know for today, is that we are thankful for the prayers, counsel, financial blessings, words of encouragement, and mighty hand of our King and his faithful servants because without them the last several months would have been bleak indeed.

Tzadok's unexpected journey is a truth that we, as a family, are having to face. We had plans, a vision, but now we have a mountain in front of us. Tzadok Obadiah, meaning righteous servant or worshiper, was born on March 28, 2012 at 3:20 A.M. Our precious fourth born son was beautiful and healthy. He came out hungry, and I nursed him right away. The labor and birth were wonderful just like he is. We couldn't be happier. He reached all his milestones early just like his 4 brothers. The joy and laughter Tzadok brings to our family is immeasurable, and he loves to sing and worship our father. He will repeat and say any word; therefore, he loves to tell stories. He will tell you a story over and over again until he makes sure you got it. His brothers think he's the greatest, and he loves his brothers. Those big brothers of his are always laughing because Tzadok is so cute. Our oldest son has always said, "He's so cute it hurts." The brothers are all very close and Tzadok, himself, has now stepped into big brother role. Not only is he a little brother, but he now gets to feel what it's like to be the BIG brother. Now that we've introduced Tzadok, let me give you a run down on our family. Jeremy and I have been happily married for 10 years and in that span we have had five incredible sons. Azariah who is 8, Hezekiah 6, Ebenezer 4, Tzadok 2, and baby Zephaniah 3 months. All the boys have been born in March and April, so they grow-up together! Obviously, we have been and are very busy. Jeremy decided to go back to school when I became pregnant with Ebenezer, so we moved to Tullahoma and started a journey with a full-time working, full-time student, dad. Some semesters were easier than others, and this last year we were inching across the finish line. We made it! With the strength of God, and the support of our family and friends we finished the race. Even through that stressful time, our marriage stayed strong and our boys thrived. We were finally finished, so we started a much easier, less stress filled journey or so we thought. After graduation, we decided to take a trip to visit some very good friends in Kansas. This trip was designed for us to take our time and enjoy each other because our lives had been so go, go, go that we wanted to take it easy. During this same time, we also had to move from our home that we had been living in for the past 5 years. So, we moved everything into storage and went to Kansas. When we got back from our visit to Kansas it was going to be job hunting and place hunting; however, our trip to Kansas changed everything. To recap, I just had a baby, moved out of my home of 5 years, and my husband just finished 5 years of college. I was exhausted. He was exhausted, and our children were exhausted. It took us 4 days to get to Kansas, but once we arrived our friends were there to give us respite. Needless to say, our friends were wonderful and their hospitality was warm and filled with kindness. The plan was to stay 9 days, but our trip was cut short when the accident occurred. How it all happened was that we decided to take the kids over to the park in Independence, Kansas. Tzadok then fell off a very steep slide. I mean a really steep slide. The slide was 20 ft high and was one of those old metal slides from the 50's. He didn't fall from the top, but we still called an ambulance to make sure he was alright. Miraculously, Tzadok was not injured from the fall, and we were praising the Father with all our might. The ER doctor had come in a couple of times to talk with us about results and that she thought everything was okay, but one of those times she came in and sat down. Tzadok was napping in the bed and I knew something was wrong even before she began to speak. The doctor confirmed that he was fine from the fall, but the CT scan reveled a mass in his brain. I started getting dizzy and didn't hear a whole lot after that. Mass in the brain, what? My thoughts were that this was not possible my son is fine. I heard the doctor say something about an accidental find, that's what they call this in the medical world, in our world, we call it the hand of the Almighty. The hand of God showed us this even when we didn't want to see it. I cried in the ER on my husband's shoulder, and I even remember going to the bathroom to look in the mirror, but all I could see was a fog surrounding me. Nothing was right. Nothing seemed real. We agreed to take Tzadok to a pediatric neurosurgeon the next week in Nashville partly out of fear for the news we just received and partly because we wanted to run from that room to hold Tzadok in the safety of our arms. For the days following the ER visit, our friends in Kansas filled us with strength, prayers, and love, but the shadow had fallen and we were soon on our way back to Nashville.