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!!!