Friday........

        You always hear that families in crisis need to return to a normal lifestyle as quickly as possible. The reasons for this are endless, so we have tried to piece together some manner of normalcy. We quickly found a house in Tennessee that has come to feel like home again; I have found a job, not a particularly well paying one, but a job none-the-less; and we were on the cusp of starting to receive better job opportunities to stabilize our income crisis. We've plugged back in with our fellowship and even hosted a weekend get-together at our home. St. Jude's three month check-up came and went as a roller coaster starts and finishes, and aside from the occasional headache Tzadok seemed to be doing as well as is to be expected. However, over the last couple weeks Tzadok has been complaining of his head hurting again. So we have watched him closely, but to be proactive we decided to contact St. Jude yesterday to set up another scan and draining of the cyst if need be. This situation is so delicate because Tzadok is young and his head hurting may not be as bad as those looking at him interpret. St. Jude was thrown into a frenzy by the information that Tzadok was complaining of headaches and they tried to make us go immediately to an emergency room, which we refused because he is not vomiting, suffering from vision loss, or extreme nausea, which are the signs of Hydrocephalus. Through multiple phone calls we finally agreed on getting to St. Jude on Monday, scan on Tuesday, and drain the cyst that evening or the next morning. This course of action was okay with our Oncologist and we felt much better about having our team see Tzadok instead of some random emergency room crew.

Fast forward three hours:
        Rachel received a phone call from our old neurosurgeon that Tzadok has brain surgery scheduled for Tuesday if the scans are not favorable on Monday. Additionally, we were to be admitted into La Bonheure hospital on Sunday for the scan on Monday. This was an absolute shock for us considering that we had already finalized everything with our St. Jude visit several hours earlier. Obviously, we declined this because of numerous concerns and we immediately contacted our clinic at St. Jude with questions and a little shock that they may be overreacting. After several phone calls, we quieted the hysteria and our visit to St. Jude is going to be the same as it was before this troubling phone call except that the possibility of a brain surgery is a very real possibility if the scans are not "FAVORABLE." To balance the conversation, we respect our neurosurgeon and he did a fantastic job with Tzadok's first surgery and there are legitimate concerns such as the possibility Tzadok may have multiple cysts in the same location and they are all not being drained or that the walls of the cyst itself are growing, but we want to make absolutely sure that surgery is the only option before we move forward, which is wise. The shock of Friday is reverberating in our minds. It was supposed to be Ebenezer's birthday party and it ended as a medical fiasco. We are in a great need for prayer on all levels, but Tzadok is our foremost concern. Please pray for great scans on Tues., please pray that if surgery can be avoided let it be so, and please pray for wisdom on us and Tzadok's care team that we don't act on fear but on fact that is based in truth and not supposition. I have often pondered over the moment Adam and Eve decided to enter into a contract with death, destruction, and despair. I wonder if they ever gave a thought to the generations that would come after them and would have to face a myriad of terrors that are all to real for all.

Outside the Shadow

Hello everyone, I would like to give a brief update on Tzadok. Earlier this month we had to return to St. Jude for his three month check-up. We ended up going a few weeks early because he was complaining of frequent headaches, and the MRI showed why. There was growth with the tumor, so we had to drain some fluid from the tumor to relieve pressure for our little man. He immediately felt better for which we were relieved; however, there was growth with the tumor and we learned that this could go on for several months or possibly years. We were definitely upset by this news, and bad news sometimes breeds more bad news. From there, his Cortisol (stress hormone) levels were low, so the doctors were counseling us to go ahead and start Tzadok on the synthetic hormone replacement. This news didn't sit well with us, and we were even angry because we were supposed to be finished with treatment, and the major issues were supposed to be behind us. The Father then reminded us that Tzadok is not abandoned or forsaken because we had the Cortisol levels tested again and his levels were functioning normally. This does not happen. The test results do not bounce around because when your body stops creating this hormone it never gets better. Graciously, we witnessed a miracle when Tzadok was spared from having to take this thrice daily hormone. This news rejuvenated us,  and we've been enjoying our new home since receiving it. All these events happened in the beginning of the month, but now we are seeking prayer for Tzadok again. His headaches have been steadily increasing over the last week or so, which could signal more growth with the tumor. We want to rebuke this shadow and have Tzadok's perfect health be a testament of the father's strength and will. Please stand with us, but most of all please keep Tzadok in your thoughts and prayers. He needs a well deserved break from doctors, needles, and nursers, but most of all he needs to have this tumor stop growing, so he can walk in his bright and full future that is free from shadows of doubt and fear, and are instead filled with life and praise.  

The Glass Ceiling

It seems like I have to apologize for the distance between posts each time I write, but days and weeks often blur together. To sum up the past month since leaving Jacksonville, we have been trying to settle into our new house in Tullahoma, which was not exactly what we were expecting to come home to. Cleaning and cleaning and well more cleaning. However, we are mostly settled and feel like this is going to be our new home even if it is temporary. In many ways, it feels like there is a glass ceiling above our family. We can see the bright future ahead but we can't seem to break through and we are surrounded by so much care and concern that it is absolutely nauseating at times. One new concern deals with Tzadok. He has been having more headaches than normal, so we heading to St. Jude this Sunday to run more tests to make sure the cyst is not growing. Immediate prayer and thoughts would be much appreciated. This trip was planned for the middle of Feb., but it has been moved up due to this new side effect. Obviously, this unexpected trip carries it's own amount of stress, and our kids are a little disappointed, but we take comfort that if there is no new growth then we may be getting a glimpse of the new norm of our lives, which in some ways is a blessing. Tzadok has also been having a difficult time sleeping at night, which has always been challenging but is becoming more frequent. This was yet another possible side effect of the radiation that is starting to surface. We are trying to remain positive, and we are very eager to know the MRI and CT results. We will pass on the results when we have them. In the meantime, please pray for Tzadok he needs all the prayer he can receive.

Out of the Frying Pan and on to Tomorrow

This chapter of Tzadok's journey is about to come to a close forever. There are only two treatments left for Tzadok to endure, and he has overcome this process like a champion. He has made us proud in so many ways that our zeal for life has been rekindled. It is amazing how the Father has used this trial to strengthen not just our family but a multitude of families around us both far and near.

For everyone that knew we were sick with the flu, we are finally rounding the bend and making a full recovery. Rachel was so sick and we greatly appreciate all of the prayers and comfort provided by many especially LeGwen Hamilton, or Gran Lee as she's known around these parts, for her willingness to fly to Jacksonville and give us that final boost we needed to set us on the road to recovery. When we first left for Jacksonville I remember saying that at least we wouldn't have to deal with the flu. Little did I know, Florida was going to be the hot bed for the bugger this year. Oh well, we made it through and Tzadok was miraculously the least sick of all the family. The results for Tzadok's last MRI were great. Again, there has been no growth and the tumor appears to be fully stable. In the words of Tolkien, we are jumping out of the frying pan and leaping into the next leg of this journey. This, perhaps, will be the most nerve racking of the entire journey because Tzadok will be heavily monitored for the next 5 years. His endocrine function and the absence of new tumors along with no growth of the current tumor will be his greatest concern moving forward. There are tables and percentages representing all of these woes, but we are well aware that we serve a mighty God that is able to heal, protect, and comfort those who call upon his name.

One final obstacle remains for the Legatzke family before we can completely say this stage of the journey is complete, which is housing and a stable job to provide for my family. So I am reaching out to those of you who have blessed us so abundantly the past several months to aid us financially one last time. All signs are guiding us back toward Tennessee, because of Tzadok's doctor visits, our family, and our support base there, but until I am able to secure semi-permanent employment housing is going to prove extremely difficult to procure. I am going to update the GoFundMe account to reflect this new request, but our goal will be for six months of rent that we can give to a renter so we can bypass the income requirement for housing. This will give me the time I need to enter into a new career and help Rachel and the boys settle into our new normal. The boys keep asking me when we are going back to Tullahoma because they miss their home so much. I can't blame them for wanting to return there because it was there where we really grew together as a family, and it was a shelter of security among the blowing storms before the bottom fell out. So, Tullahoma sounds as good as any place to me. To access the go fund me account, copy gofund.me/HelpTzadok into your browser and it will take you directly to our donation page. Thank you all for your prayers and support, without you Tzadok's journey would have been a short unsuccessful one. Be blessed and 7 days till we head for home!!

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.