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!