7 More to Go!

My apologies for the late post, but the last several weeks have been extremely busy. I know that everyone has so many questions and concerns, so I will try to answer as many of the most important ones that I can through this post. We have also been battling the flu this entire week, so that hasn't helped me catch up the blog either.

How is Tzadok doing? As far as short term side-effects are concerned, Tzadok is doing miraculous. He has had no skin redness or irritation. He has had no vomiting or uncontrollable fever. Tzadok has also had 4 MRI's since being here and the tumor has shown no growth whatsoever from treatment. He has had nausea issues off and on and he is becoming more fatigued which is inevitable. So we still need prayer for these last treatments that there is no new short term side-effects, and that we can continue to keep him hydrated and fed. He actually likes going to the hospital now and he has a fan club up there including Dr. Ho, the MRI doctor. Tzadok is the youngest patient to actually complete the MRI's fully awake.

How is the rest of the Fam. doing?  Rachel and I are exhausted, but we are overcoming. It has been difficult, but it was the right choice to keep the family together. Aside from the flu, the boys have all been coping well. It also helps when they have an endless supply of attention and gifts from doctors, nurses, social workers, well wishers, and foundations. I can tell that they are tired and are ready for things to get back to normal,a new normal. We know our lives will be different but that's okay.

What are our Next Steps?  We are starting the process of preparing for the future. Tzadok will start his follow-up appointments in mid-February with St. Jude, which for the first year will be every 3 months. He will have in depth MRI's, CT scans, and endocrine tests. He will also be placed on growth hormone, but we are not sure hen that will begin.It will be at least  year. With all that being said, Tzadok finishes on Jan. 7 and we will leave Jacksonville no later than the 16th. We need to find a new place to lay our heads after that. We are trying to figure out where to go next, but we aren't sure if we need to return to middle Tennessee, or find new lodging around the Memphis area because of Tzadok's doctor visits. We want the Father to show us the next step and right now the only thing we know for certain is that we are not going to stay in Jacksonville.

What can we be praying for and what can we do? We need continued prayer for protection over Tzadok as he finishes treatment. No short term side-effects! Along those same lines, we need prayer against long term side-effects, which are many and severe. Please, pray for this for many years to come. This will always be a need for the rest of Tzadok's life. Our Go Fund me account is still active for anyone who wants to help aid us in the next leg of our journey. Any funds we receive will help us secure housing in the area of the Father's guiding. And prayerfully things will start to get a little back to normal in the Legatzke household. We have been blessed abundantly with prayer and aid during this time, and in many ways we feel unworthy but a very special thank you belongs to L.A.M.B Fellowship, First Baptist in Opelika, AL, and Victory Baptist Church in Darlington, SC. We also want to thank all of our friends and family that continue to stand by us through cards and love. We also want to thank to all those on Rachel's grandparents email list (Don and Yvonne Sledge) who have and continue to stand with us. We have gained so many friends all across this country and the world through this experience. We will update the blog again shortly as treatment comes to a close.

Praises, New Challenges, and Almost Half Way There

It is so hard to believe that we are almost half way into Tzadok's treatment. I know I keep repeating this same statement, but Tzadok is a warrior. We have settled into a routine, which has helped him get more accustomed to this new normal. Every Friday his port buddy is deaccessed and on Monday he is reaccessed. For a visual, deaccessing and reaccessing is describing the needle connected to a small IV line that is used for drawing blood, giving medicine, and administering anesthesia to him. His port buddy, as we've come to call it, is the instrument that was surgically implanted next to a vein in his chest due to the amount of times he will have to be stuck with a needle over the next several years. Every Tuesday is picture day (MRI) and on Wednesday we have a doctor appointment along with normal treatment. It seems strange and unsettling that this is our weekly norm, but it is as close to a normal week that we have had since leaving Kansas. Most of Tzadok's anxiety has subsided, so as always thank you for your prayers and concern for Tzadok. All of Tzadok's scans since the initial scan have shown no growth of the tumor, which again is a major testimony to the Father's greatness. If the tumor grows, the radiation field will have to be widened, so no growth is the absolute best case scenario! Another praise is that Tzadok has not had any headaches since the first week, so his headache may have been unrelated to treatment. He is having some new difficulties however. Nausea is the main side effect we are facing right now. One of the major short term side effects for Tzadok is nausea because of all the anesthesia medicine he is given. He hasn't vomited but his appetite has definitely decreased. It appears that our next prayer request will be that we find ways to get him to eat and drink. Right now he will eat his favorite foods and he will drink as long as we push the fluids, but if we go a little outside of this realm he is not even slightly interested. The nausea also spikes when he rides in the car, so trips outside of the house are always taxing. If he has to eat spaghetti with chips and salsa for a month, than so be it, but we would like to vary his diet as much as possible. I will try to update again over the weekend, since our routine has become more stable, but please keep Tzadok and our family in your prayers and thoughts. Oh, I almost forgot if you would like to add a few other children to your prayer chains their names are Zen, Zoe, and Cole. Zen and Cole each have Craniopharngioma like Tzadok; however, they are 9 and 13, and Zoe, the little girl, is going through Cemo and radiation at the same time. She is so young facing so much. She is close to Tzadok's age. These are all amazing children that we have met and become close with. Even their stories are similar to ours. Please remember them, as you have remembered us. We miss everyone terribly and I pray blessings on all of your houses.

More Blessings, More Beginnings

   Hello everyone, I pray this Monday evening finds you well. In many ways, we are at another beginning with Tzadok's treatment. The Father has been very gracious to us by allowing us to settle into this new momentary schedule. Since beginning Tzadok's treatment a little over two weeks ago, we have had four treatments total, which have given us the time to settle in to our apartment and brace for the full time schedule that has just begun. For the next three weeks, Tzadok will have five treatments a week with another week of four treatments before the Christmas holiday. In addition to this weekly routine, there will be weekly MRI's scheduled to monitor the potential growth of the cyst during treatment. It is not uncommon for the cyst to grow in size during treatment because the radiation will cause it to become inflamed. Eventually, the goal is for the cyst to stop growing and the radiation to kill it.  Tzadok recently went through one of these MRI's, which he did fully awake for ten minutes with no movement! The MRI did show growth of the cyst, so we are praying that there is no more growth because if it becomes to large they will have to widen the radiation field, which we do not want at all. Also, it would have to be drained and a plethora of other concerns. On the bright side, we watched the Jaguars beat the Giants in a nail bitter. Tickets were free, but the seven dollar Pepsi's weren't. Tzadok himself is doing well. He complains of nausea and headaches, which are small side-effects in the grand scheme, but some of his anxiety seems to be calming down. The most gut wrenching thing for me is when he says "nothing I have." Many times he's rewarded with toys or food for his co-operation and good attitude, so what he is saying is that there is nothing he has or gets that will make him feel better about going through the trauma he is being asked to endure. That is truly difficult. Even at such a young age, he understands that possessions are meaningless. Again, we would like to offer our sincerest thank you's to those who have stood by us. We see many families trying to walk alone with households divided and parent's stressed about money, housing, or any number of other stressers. The stability of our family standing united is a blessing in which we are constantly reminded and eternally thankful. Without all of you none of this would be possible. We have not had to worry about financial stresses because of your generous hearts. Again, there's not enough thank you's and it is a blessing to focus on Tzadok solely at his greatest moment of need.  

Ups and Downs

It has been a few days since I updated the blog, but as always it has been a busy few days. As many of you know, after Tzadok's first treatment he spiked a fever of 103.2 degrees. Anything over 101 we are supposed to go to the ER because of the port in his chest. So we spent that whole first night in unease and tension because if this was how the whole treatment was going to be we didn't know if we could make it through. Thankfully there was no infection in the blood and the fever was linked to the cold that had been running through our house. The second treatment went more smoothly, and we were even beginning to become more encouraged that we were going to make it through this process; however, Sunday rolled around. Treatment this week was supposed to be from Sun. to Wed., but the proton machine went down, on Sun. We were a little happy with this news initially because Tzadok was given an extra day to recover from the bad cold in the house. Monday then came around and the proton machine was still malfunctioning, so the radiologists were concerned about the large breaks between treatments for Tzadok. He was now going on a three day break with a four day break coming for the Thanksgiving holiday. In short, the doctors wanted us to consent to a one day use of radiotherapy instead of proton because it would be up the next day. Everyone kept saying one time isn't going to make a difference, and with all respect they are probably correct, however I had a feeling that this would not be a one day consent so I declined. Monday night came around and we were in another set of deep conversations with doctors because the proton machine was still not functioning and we found ourselves being counseled to agree to radiotherapy again for another day. For anyone reading this blog in the future there are two different proton schedules, some institutes use a 28 day treatment cycle yet most use a 30 day treatment cycle. Research between the two methods have shown that there is little or no difference between the two cycles. St. Jude and the University of Florida follow the 30 day treatment cycle, so we figured that we were being counseled this way because this is how it is done at these institutions. Essentially, radiation must build up in your body to achieve the desired effect and with the long breaks there is a concern that the radiation is not going to be as effective for Tzadok; however Tzadok still has 28 treatments to go which is a full regiment for some institutes that treat this same type tumor. Taking all of this information in to account we refused the radiotherapy because we are in Florida for proton therapy not x-rays. On a side note, Dr. Danny is an amazing radiologist. He has been very supportive and respectful of our decisions. He has went out of his way to make sure our voices and concerns are heard, and he has made us an important component of Tzadok's treatment, which warms our heart. Even though we didn't agree on this particular situation, he never made us feel wrong or bad about our decisions. That is the sign of a true professional. I know this has been a long post, so in summary Tzadok has had two treatments; he will start proton again tomorrow and he will also have a treatment on Fri; we've been in and out of the ER; and our proton plan has changed a bit, but the Father is still in control. Among all the ups and downs, we have met some precious people here. All of them are fighting for their lives like we are, and in the next post I will hopefully get to introduce them to you. Well, may you all be blessed and sleep is on the horizon for me.        

Proton Therapy Begins

The next stage of Tzadok's treatment begins tomorrow. For everyone who has been following this blog, please start praying for Tzadok that treatment goes well and that this tumor is killed with no side effects. The process will last for 30 treatments, which will conclude near the end of Dec. We have not been excited about this step of treatment for obvious reasons, but it seems that all of our decisions have led us here to this moment. The doctors can give no guarantees about what the future holds, and all they even talk about comes from percentage charts, but we serve one that will not forsake us or abandon us. We don't feel that we have been led here to be abandoned, so we know that we will make it out whole on the other side, but there is an air of unease that makes us nervous not just for the next 30 treatments but for the years to come for Tzadok. We know that we can't protect Tzadok from everything, but we hope that we have made the best decisions for his future. It is our earnest prayer that he lives to see his children's children upon his knee. On a lighter note, it has been great having everyone under one roof again. We have cooked, cleaned, unpacked, and also started sharing again as a family. In other words, all of the boys have colds because we share everything in our house. This has caused us a little worry because we wanted Tzadok to be at 100% before treatment began, but the doctor seems to think it will be okay. So we will trust that he knows what he is talking about. We're all tired and a little worse for the wear but we feel blessed, which is a testimony to all of you and all the prayers and support you have given us. As I've stated before, we wouldn't have been able to walk this out together without all of your aid in our time of trouble. We will update routinely about Tzadok and how well everything is going, but please keep him in your thoughts and prayers for the next few months.

Stability is on the Horizon

It is amazing the ups and downs each day brings. After our last post, the apartment we were going to get on Thursday has been moved up to this coming Sunday. We are all so excited. For the first time in about a month, we will all be staying together under the same roof. On top of that, this apartment has a full size kitchen. We are so ready for some good home cooked meals because we are about sick of eating out, not to mention the ridiculous cost of eating out in Jacksonville. One good thing about Jacksonville is that there are a plethora of organic markets, which is going to be a major plus in a few days. Thankfully we will have four days to settle into a routine before treatment begins.
As far as Tzadok is concerned, he continues to be a trooper. He is starting to get a little anxiety from all of the doctor's poking and sticking him, and he doesn't like being put to sleep at all. Please, pray that the team in Jacksonville is caring and compassionate toward him and Rachel. The team here deals primarily with older patients, and it is apparent in their attitude and demeanor. It is not like St. Jude at all. We met with the oncologist here, and he went back over some of the side effects of radiation and we were given yet another sour pill to swallow. I don't like speaking negatively over Tzadok but just remember to keep Tzadok in your prayers not only for the six weeks of treatment but the years to follow as well. Our little warrior will have a long road ahead of him. One other thing to keep in your prayers is that Tzadok does not get a fever during treatment. We must keep him well throughout this process because if he gets sick there will be a regiment of tests, isolation, and a general fear of infection getting into the port on his chest. I think I speak for all my family when I say we are a little home sick. We are ready to be back home among family and friends, but most of all we want Tzadok well and prosporous for years to come.

A Housing Rant by Jeremy Legatzke

We've been in Jacksonville for only a short time, but in many ways it feels like an eternity. It is a constant struggle to remind ourselves of God's miraculous mercy because one constant concern continues to fester above all others: housing. Let me preface this statement by saying on November 20 it seems this issue will finally fade away, but there is still eight days from here to there. Yesterday we made contact with a fully furnished apartment company that will rent to us for two months, which is a major blessing. Of course, it is a little small, but it will do until we can move on with our lives. The apartment becomes available on November 20, which is a major praise because we are ready to wash dishes, cook, and wash more dishes :) Regardless, we had hoped that the Ronald McDonald House would allow Rachel and three of the children to continue to stay in the room they are currently at in the Wyndham Hotel until the 20th, but we have been mislead by this assumption (I will explain shortly). Here is a short compilation of rules and guidelines for housing provided to families facing serious illness: # Fact 1: The Ronald McDonald House will only house a family of up to four individuals. # Fact 2: The rooms are for families staying longer than two weeks, but under six months. # Fact 3: There are many arts, crafts, and meals children can participate in to feel special on a routine basis. I know I am about to get on a rant, but please indulge me as I step up on the soap box. Before we left Memphis, we had discussed with St. Jude that we would be staying at the RMHouse, and that we would also get an extended stay hotel for the other members of the family that could not reside in the house. This sounded great to them and to us. I reiterate that there was no problem with this arrangement before we left for Jacksonville. Then the day we arrived in Jacksonville we discovered that no one placed our reservation for the RMHouse. We contacted several people shortly after arriving to find out that the RMHouse was full. This is no problem because when they are full they let families stay in local hotels until room is made inside the RMHouse. The RMHouse finally found us the Wyndham Hotel where Rachel and three boys stayed from Sun. to Wed. morning; however, on Mon. we began to ask the question where the four troopers would be staying after Wed. morning in an effort to be proactive. Following our question on Mon., we have been constantly badgered about our family size; We have been denied the privilege to reside in the RMHouse; We have been told our children could not partake in the activities designed specifically for them; They cancelled our room at the Wyndham on a day when we had doctors' appointments, and we were given a list of hotels we could pay for ourselves. All this has come about due to our family size, but I remind my fellow bloggers that only four members of my family have and/or would have stayed in any hotel they would provide for us. We are hurt and feel that we are being punished for no good reason. We are together as a family because Tzadok needs his Momma and his Daddy, he needs his brothers, he needs their tears of joy, their comfort, and the sense of normalcy they bring. We have not tried to make waves here, in fact, we have smiled and laughed even when we have been done wrong.
Among all of this chaos and turmoil that was supposed to be a stress reliever for us, the Father blessed us with the short term apartment that will come to fruition shortly, and the staff at the Wyndham Hotel have continued to work with us extending our stay when they didn't have to. However, this will be an additional cost that we were not expecting to have to cover. Tzadok's health and well being are our chief concern, and if my family size offends some they can choose to live their lives however they see fit, but I have chosen to live my life raising Godly young men that are wonderfully and perfectly made. I wouldn't change a thing, and all of these struggles only knit us tighter together as a family. Praise Yah!!!

  

Jacksonville Day 1 of Many

Our arrival to Jacksonville was so badly needed because we have been living on the road for several weeks now, and we were looking forward to creating some stability for a few months but that appears to not be the case. The extended stay hotel we are staying at is little more than a room and a bathroom, it isn't what we were expecting at all. The Ronald McDonald House is booked full so they will be moving Rachel and Tzadok around local hotels for the foreseeable future, which is just ridiculous. It is challenging to remain positive when the living arrangements are awful. I don't have the time or energy to spend on the countless stressers that stem from this issue, but please pray that we are able to find suitable housing quickly. We will not be staying at this supposed extended stay beyond this week. So, we are looking at vacation houses, some are affordable and some aren't but quite frankly our family won't be split up. At the very least, we will move to a larger hotel where we can all be together. The trip to the beach, however, was just what the doctor ordered. It was a contrast to the storm brewing in the background, and it was a memorable time for the boys. We are nervous about the appointments next week, what with, new doctors, new nurses, new rules, and a new massive city to try and function in. It is a time like no other and we feel very assaulted right now on almost all fronts. It has only been because of everyone's prayers and support that we are even able to persevere right now. For an update, a very special thank you to everyone who continues to aid us financially through Go Fund Me and beyond. We have exceeded our goal, which leaves Rachel and I breathless and immensely blessed. You will never know how you are affecting our lives for the better.

On the Road Again

So, we are on the road again heading toward Jacksonville; however, we've made a pit stop in Alabama to visit some of Rachel's family and friends. This trip was a little unexpected because of a death in her family, but looking beyond that sorrow there has been a great sense of joy here. We are still in a sense of awe with how the Father has arranged everything in our lives up to this point. He truly knows how we think and he has guided us beyond our abilities. For example, we don't run to the doctor so He orchestrated a trip and a fall that forced us to reveal Tzadok's condition. Next, He used Vanderbilt to speed up the process when we were hesitant to seek treatment. Again, He displaced our family so we would be more likely to seek proton therapy when it would have not normally been an option. He has moved mightily and we can barely keep up, but we see His hand touching every aspect of this journey. During the last blog post, we were unsure whether to head to Jacksonville or to try and delay treatment even up to this point we have wanted to wait for the radiation.  However, it is obvious that this needs to be treated now because of a myriad of problems that can arise from continuing to wait. Dr. Merchant has been a great counselor and though we don't always see eye to eye he truly wants what is best for Tzadok. We did ask for an extra week to get down to Jacksonville, so starting this coming up Monday Tzadok will begin his eight weeks of treatment. This is surely not our plan because we want to go a natural route with monitoring and waiting, but it has become apparent that the Father wants this dealt with and he has used every factor in our lives to bring it to pass. May it be for his glory, Tzadok is his anyway. We are just the servants blessed enough to hold his hand as the Father guides his way.

A Mama's heart

We are wrapping up a two week testing period for Tzadok. It has been long and hard. The whole family are exhausted and dragging. Jeremy and I have not felt exhaustion to this point. There is always something that has to be done and the nights are late and mornings early. There is no naps or really sitting of any measure. We constantly have multiple things going on at once. My Gran Gran asked me how tired I was on a scale of 1-10. I replied with 7. I'm so exhausted responding to questions are almost impossible.  I thought about it later and my whole body was crying 12! I do hope it is easier in Jacksonville. The doctors said it would be. I told them I didn't know if I believe them. I do hope they are telling the truth. I'm thankful for my sweet husband and couldn't make it an hour without him. He is holding the baby, homeschooling boys, attending important appointments, feeding children, and running here and there all day long. We are glad to be here together. The boys have been so wonderful and get complimated all day long. They are now keeping count and do enjoy all the attention. Most people know us now and and know Tzadok by name.(We do stick out a bit)  We are thankful to be here at St. Jude and are getting excellent care for our son. There are a few things we don't agree with but St. Jude really has been understanding overall. Much better than I originally thought. We are scheduled to leave St. Jude this weekend to be in Jacksonville on Monday. Please pray for us as that seems impossible.  We are so exhausted and the task of packing up and traveling seems to daunting of a task.

Tomorrow Tzadok will be put to sleep for a hearing test and while he's asleep they will drain some more of his tumor. Please pray for him and for the draining to go perfectly. It's not scheduled to start until 1:00. He won't be able to eat anything until after the procedures. That's something that I have found so challenging is cutting off food and fluids at certain times. Anytime he is under anesthesia there are guidelines I must follow. This is very difficult and challenging in a 2 year old. I had not considered this before arriving. It will be like this everyday for the next 6 week's. I still can't help but think that waiting before proton radiation is a good idea. We want to do what is absolutely best for Tzadok. We still need guidance on this part. Dr. Merchant our radiologist will be speaking to us tomorrow after the draining. He knows our concerns and understands why we are hesitant. We also realize that treating now may be the right thing for Tzadok. Either way we are not talking about waiting too long. Merchant said possibly 3-6 months. I asked him if 6 months would make a difference and he responded with 6 months in the life of your 2.5 your old is a lot of their life. This is very true indeed.

This is the hardest thing I have ever had to do. I cry at some point most days. One minute I'm completely overwhelmed and scared then the next unbelievably thankful.  We do have so much to be thankful for. I used to think I had a "Hard" day. Those days are what I long for now. So Mommas hug all those precious little ones . Put down the phone and spend time with them.Just love every moment because you never know what you may half to face. We surely didn't see this one coming. Being at St. Judes never even crossed my mind.

I do want to take some time to thank all of you who have lifted us up during this time. You guys have prayed and financially supported us during this journey.We couldn't and I mean COULDN'T make it without all of you. It has made this time bearable and we get excited to hear from you. We are getting close to our goal for Jacksonville and we can't believe the support we have seen. Thank you all so much for caring and sharing! Whenever we go to Jacksonville we will be ready and know we will be able to make it. So tonight as I lay down this Mama's heart is full. Full of Love and thankfulness.  Full of Happiness because life is too short to be any other way. Goodnight my dear family and friends. We miss you all so much.  We will see you soon as a whole , well, and thankful bunch of Legatzkes!

Memphis Day 7

It's hard to believe that it has already been a week since we have arrived in Memphis. Tomorrow will be another early day for Tzadok and his brothers. There will be more tests for Tzadok's endocrine levels, and we will have to make our final decision about the nuclear PET scans scheduled for Tzadok. As an update, Rachel and I have been opposed to these scans because they won't directly benefit Tzadok. They are strictly research, and we don't feel that Tzadok needs any extra radiation on top of the multitude of scans he has already underwent coupled with the long road of proton radiation coming down the pike. So we will probably opt out of these scans, which we have discovered is perfectly okay to do. Last Friday we had a great visit with Dr. Merchant and we voiced our opinions and concerns over a great many topics, and he gave his best advice some of which we agreed with and some not so much, but we feel that a trust has been established between us. We will be draining some more fluid from the cyst this week, so we can make sure the catheter is working properly and, to be sure, there is still plenty of fluid to drain. We had thought that the entire cyst had been drained during the surgery, but it wasn't because of some nasty side effects that could take place from the sudden draining of the tumor. This was one of the interesting facts we learned about on Friday. Aside from that, everyone remains in good health and Tzadok continues to be given strength from the Father, but it has been an interesting weekend to say the least. First, the extended stay hotel that we stay at decided to place dirty linens back on the beds instead of clean linens, which was actually disgusting. Then our bank decided to freeze our account for some unknown reason, so we spent the weekend in downtown Memphis with no way to pay for any necessities, which was a hassle that will hopefully be remedied tomorrow. Please pray that we are not side tracked by these little annoyances, and that we remain ever focused on our handsome son.  

Memphis Day 3

Its hard to believe that we have been here for almost four days. Days fly by like a whirlwind here at St. Jude. Each day brings more tests and more surgeries, and we often comment on how bleak many people's situations are here, but then we are reminded that Tzadok is in a battle as well. The priest in scripture that carries Tzadok's namesake was a warrior priest in fact the whole priest line of Tzadok is a warrior line. They led Israel through tumultuous times, and Tzadok leads us through a tumultuous time as well. The anesthesiologist that put Tzadok to sleep for his port surgery commented that Tzadok is a fighter because he wouldn't go to sleep, which might have been a surprise to him but wasn't a surprise to us. Tzadok is a fighter, young of course, but a fighter non-the-less. As for new news, we met with the endocrinologist and Tzadok's endocrine functions were not as great as we hoped for. They weren't terrible, but they were low. Lower than what is considered acceptable by medical standards. Good news came from this visit, however, because Tzadok's glucose levels were so good that they canceled a glucose stimulus test, which is a praise because it is a long test with a lot of blood drawings. If you could join us in prayer for the MRI tomorrow, that will be a major test because it will inform us if the tumor has begun to refill again. Obviously, regrowth is bad. Stable or no activity is preferable in this instance. Overall our path is becoming more clear, but it is still not easy to face or consider. After hearing the endocrinologists report, we are even more thankful that the Father reveled this to us when he did. Things could have been so much worse in a few years for Tzadok and now we have time to repair and help some of the damage that appears to have already taken place. We spend some time at St. Jude loving on families that are hurting so bad with grave news. It seems that even here my precious wife is an encourager (which is her spiritual gift). A gift for which I am most thankful to witness. Our boys took part in a karaoke night today were they sang some praise songs talking about the Father's love and forgiveness, which was a positive contrast to the filth of some other songs offered up at that time. It seems they have inherited some of their momma's gift. Your gifts continue to encourage us as we get even closer to our goal for Jacksonville. Please continue to support us through the go fund me site, your aid will be our sustenance in a few short days, which is a comfort and joy for our family. Well, I think that's about all for tonight, so all have a great night and hold your families a little closer because life is fragile and time is often fleeting.

Memphis Day 1

Its late so please excuse the brevity of this post, but it has been a long week and this day is no exception. Today we are reminded how blessed Tzadok is, but we can not forget how difficult proton radiation may be for little Tzadok. Tzadok went through three x-rays today and another CT scan all of which he endured without any sedation. This absolutely shocked the nursing staff at St. Jude. We were told that they have never seen a two-year old perform so well through these tests, which made our spirits soar for our little warrior, but we wish that he did not have to undergo so many tests with radiation looming in the distance. Please continue to pray for the Father's protection over Tzadok because he has only begun the two weeks worth of tests he must endure. We are filled with hope and the blessings from so many of you continues to amaze us. The goal we set to financially weather this storm has already been half met within three days, which tells us that the Father is moving among his people and that Tzadok is a truly loved young man. There have been so many small blessings today that I must recap a few of them. First, every appointment we had today was quick moving and we could never sit down for more than five minutes before we were moved to another appointment. This was astonishing because there were so many others that were waiting far longer than we were. Next, our lunch was paid for because there was a glitch in the computer system (glitches equal Yahweh reminding us that we are well cared for) even after the glitch was discovered the workers would not let me pay for the meal. Another small miracle was that we were given a small room at the grizzly house, but they upgraded us to a suite because there are so many small ones that need to eat at a family sized table for the next two weeks. Finally, dinner was provided by dear friends of ours that the Father sent to Memphis several months back. We will never be able to look back and say that we have not been guided on this journey; however, we are still uneasy about the proton therapy. I don't know if it is something you can ever truly be comfortable with, but we are still waiting for the Father's peace to wash over us concerning this matter as well. I will try to post every evening on Tzadok's progress and list the blessings we have received because we are a blessed people, and it is to the glory of our God that we speak of his provision and goodness during this time and beyond.

The Next Step and Beyond

As always, we thank everyone for your prayers over Tzadok's condition. We have explored the possibility of seeking a second opinion, but insurance and financial strain are making this path difficult to pursue. So, for the foreseeable future we will continue with the study at St. Jude, but my precious wife remains uncomfortable with the prospect of radiating our son's brain, which is to be expected. The pressure of this situation continues to take it's toll on the family, and we are desperately seeking peace from the Father because we know through his peace we can endure any trials or tribulations. Our calender for the next few months begins on Oct. 19 where we will leave to go to St. Jude to begin pre-radiation testing. The testing will finish around Oct. 31 and we will then leave immediately for Jacksonville, FL where we will begin proton therapy on Nov. 3. Radiation will finish some time in mid January if all goes well and we will be returning to Tennessee shortly there after. This, of course, is a tentative schedule because in the medical world things can always change, but as things stand now we will not be in town for Thanksgiving or Chanukah this year, and maybe even Purim as well. All this is overwhelming for us to think about and consider, which leads to our specific physical needs and prayer requests we have for the next step of Tzadok's journey.

First, please pray for the Father's shalom to cover us, so we can walk boldly through the next stage of treatment. Another prayer request is for no side-effects from research or proton radiation to affect Tzadok both short and long term. Next are our physical needs. The cost for this stay in Memphis and Jacksonville will be considerable, so we need help and support to be able to function as a family throughout this trip. Hotel costs alone for this event will exceed $3000 dollars! So a secure place to donate to our family has been set up through the website Go Fund Me. To keep things simple, the title of the donation site is Tzadoks unexpected journey, but here is the link directly to the donation page: http://www.gofundme.com/fw49xs Your prayers and support mean so much to us, and quite frankly without all of your support we would not be able to continue to walk this challenging path.

Concerns, turns, and returns

I apologize to everyone for not updating the blog sooner, but it's been a whirlwind of emotion from the time we left Memphis to now. Tzadok continues to thrive after the surgery and his recovery has been nothing less than miraculous. We have been overwhelmed by the support and prayers that the body has shown us, but the storm is not over for Tzadok. The next step in treatment for the cranio is to undergo a barrage of tests that St. Jude wants to run on Tzadok so they can have a baseline of information before the trip to Jacksonville where the proton therapy will take place. As if that was not enough to contend with, we are still struggling financially and the search for a home base, or a rental home, has not gone very well. In fact, it has been down right frustrating. We have viewed homes we would have never considered six months ago, and even then we have been refused. We've called other properties that are already rented or won't come available to rent for another month, so in short it appears the father does not want us to find a place here for whatever reason. This may be a blessing in disguise, but it is non-the-less aggravating considering that we have immaculate renters history over the last decade. As debilitating as these issues have been, they are secondary in our mind because we have done extensive research over proton therapy and have learned that children often have morbid long term side effects from the radiation to the brain, which is a list that I don't want to utter here. So, we have begun to research the possibility of seeking another opinion, and interestingly we were contacted by another family that is dealing with cranio in their five year old daughter, and they are being monitored by Duke University for as long as possible before radiation because of the risks associated with the side-effects. This family has outstretched their hands to us in such a way that it is within our means to not only seek another opinion with Duke, but also thrive while we pursue that option if we so choose, which is a blessing for which there is no words to express and is overwhelming for us to consider. There is our conundrum: seek another opinion with Duke and try to monitor Tzadok for as long as possible, or continue with St. Jude and start radiation as soon as it is convenient. In either case, both options carry risks and concerns. On any given moment we waiver between the two decisions, both sound right for Tzadok and we turn from one decision and return the next. As for the upcoming weeks, we have asked St. Jude for two more weeks so we can pray, celebrate the Father's appointed times, and seek another opinion if that is where the Lord leads us. Please pray for guidance and clarity that we choose the option that is going to give Tzadok the most rewarding and fulfilling life, and please pray that the Father guides us gently in the other issues that make this journey even more challenging. Those of you that are praying and following Tzadok's journey are our fuel to continue despite the challenges before us, which is a comforting thought that fills us with hope and joy.

Shabbat has Come!

Shabbat is a time of rest and introspection. It is a day that the father has set aside to meet with his children, and this Shabbat he is meeting with us. Yesterday, we were discharged from Lebohneur Hospital in Memphis after just only three days of recovery for Tzadok. His recovery has been amazing and I'm sorry that I haven't had time to update the blog in the last several days, but it has been a whirlwind of emotion for us. Tzadok went into surgery Tues. morning at 8 A.M. That was the most difficult thing Rachel and I have ever had to do in our entire lives. The surgery took about five hours. Wow, five hours. I remember pacing the waiting room and with each hour that passed the knots in my stomach grew worse almost to the point of being sick. Rachel also experienced this same feeling, and I still get those feeling when I think back at those moments. Who couldn't? We were updated every hour of the process. Call #1 Dr. Klimo has made the incision and the surgery has begun. Call #2 His vitals are stable and he is doing well. Call #3 Dr. Klimo has made visual contact with the tumor and is beginning to drain the cyst. Call #4 Dr. Klimo is very pleased with what he saw, and is closing the incision now. The fifth call never came and instead Dr. Klimo met us in the waiting room to let us know that Tzadok was doing great and he was on the sixth floor, which was the Neuro ICU area. Neuro ICU, words I thought I would never say.

Everyone we talked to that day and since has said if their child was facing a similar diagnosis that there was no one better than Dr. Klimo. I would agree. I am happy that the father led us to St. Jude and ultimately to Dr. Klimo. He was meticulous with the surgery and he even has specific instructions for the gauze covering the incision, which is better than some Neurosurgeons we've heard of. Its the little things that sometimes make the difference.

Back to the actual recovery, the first night after surgery was a sleepless night filled with IV's, morphine, and swelling; however, Tzadok did well drinking some liquids and sleeping for the most part. Day two was a little different. Tzadok was taken off of the IV's because he was drinking even better and even attempting a bite or two of food, which meant that we had to manage his pain differently than the morphine because it ran through the IV. So we tried a Tylenol lortab mix, which equaled mistake. He became irritable and couldn't stand the taste of the medicine so we had to regain his trust. He was also in a drug induced fog where he wouldn't eat or drink. That night he was put back on the IV's and the morphine, which was another trying time for him and for us. After that night, we regained his trust by letting him stick his finger in the medicine before tasting it and we also stopped all pain medicine except for the Tylenol, which was a good move as long as we kept the medicine in him every four hours. The next day was simply watching my boy recover. He started eating again, continued to drink, and we were in awe as the Father shrunk the swelling. He has done so well that we have been discharged from the hospital after only three days. Three days! That is also supposed to be the worst day of recovery, but we were released on the third day. How amazing is our Father!?  It is Shabbat now and I'm about to head to Nashville and pick up our boys for a long awaited reunion another Sabbath blessing. The first leg of our journey is almost over and  your prayers and support have aided us so much, but the second journey is about to begin. However, today we will focus on rest, recovery, and family for tomorrow has cares and worries of it's own.

Tomorrow has come

St. Jude is a massive hospital with a multitude of patients from every walk of life. As we went from appointment to appointment, there were mamas, daddies, grandparents, and sick babies everywhere. There was not one place you could go around here that doesn't have a bald head or a scarred head somewhere. Everyone is facing a trial and I can't tell you how comforting it is to be a part of this whole experience. Imagine you are confronting the most difficult trial you have ever faced and everywhere you turn there is someone else facing the most difficult trial they have ever faced. You draw upon everyone's strength and you never feel alone. When you cry no one looks questioningly at you, because they understand. Perhaps, just yesterday or the moment before they were also crying. Love abounds here and at times you could be sharing stories with another patient looking at the pictures of children who underwent the same struggle your own is about to face, and in another moment you may be grabbed by a nurse and given a hug. At other times there are smiles and within the same moment prayers rise because you meet someone who has received more bad news.

On to our day in particular, we started out speaking to the neurosurgeon, Dr. Klimo, about the upcoming surgery; then we had a check-up, and ended our day speaking with Tzadok's radiologist Dr. Merchant. We've defiantly learned the ropes around here and day two has been much better than day one. Let's just say yesterday I was in tears and tonight I'm not. There are two important things we have learned over the last couple days. First, you will walk and wait a lot and secondly we have been reminded that disease is not a discriminator between people. We have seen Amish, Jewish, Muslim, Christian and Hindus. If that is not enough diversity, we have seen poor and rich patients, Hispanic and African-American patients, along with Asian and Caucasian patients. Many patients are from out-of-town, while others are from the local area, however some come from other countries seeking hope. That is the thing that binds us all together in this hospital. Hope. We all hope. We all struggle. Tomorrow has come for us and we hope. However, we don't hope in doctors. Our hope is in YHWH Elohim. Please keep Tzadok in your prayers and please pray that Dr. Klimo's hands are unnaturally blessed. Pray for Rachel, the boys, and myself. Pray for our situation when we return back home, but most importantly pray that Tzadok is a warrior in just a few short hours.

Arrival

  Well, we've finally arrived in Memphis to begin treatment on Tzadok's tumor. The day was first marked by dropping three of our other boys off with some friends of the family. This was especially challenging because our boys have never been away from us longer than a day at a time and they will have to stay with our friends for over a week. It's going to be very difficult, but we keep reminding ourselves this is necessary for Tzadok. When we arrived at St. Jude our first visit was not as smooth as expected, there was plenty of miscommunication between our situation and the nurses. We got to our room late and had some issues over the use of our food voucher card, but overall there was a very sweet nurse that went above and beyond to make sure we learned our way around. It still feels very surreal that our son is about to undergo brain surgery; however, when it comes to the precious life of one of your little ones our personal preference must be left at the door and the Father must lead us in what is best for him. We have taken comfort with the fact that the Father is in control of this situation, and overall, our first day has been one of peace in the knowledge that we are in the best hospital in the world for Tzadok. Please continue to keep us in your prayers, it has been a comfort for Tzadok and ourselves. Zephaniah is sleeping and Tzadok just fell asleep because Rachel was scratching his back. It has been a blessed evening. We have a very busy day tomorrow but we will update everyone after the appointments are finished for the day.

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.