Prayerfully Quick!!

Good morning everyone who is following the journey of our awesome little boy. As a brief update, the waters of life have been relatively calm for Tzadok. We've moved across the country to New Mexico, which has been Tzadok's biggest journey over the last several months. During our last visit to St. Jude, we didn't receive bad news, but we didn't get the best of news. Tzadok is now on Hydrocortisone, which we suppose was unavoidable, but we were hopping that it would be a little longer before we needed to face that stage of his treatment. Also, his tumor grew slightly. It didn't grow enough to be a very great concern, but it has caused us to make a quick visit to St. Jude today and tomorrow.  By this time of Tzadok's healing, we were supposed to be visiting St. Jude every six months, but the new growth has kept us on the every three month check-ups for the time being. With that in mind we have a few prayer requests as we're traveling today. First and foremost, please join us in prayer that this tumor has shrunk or at the very least has stayed stable. Secondly, Daddy and little man are doing the traveling this time because Mamma is so close to having a sweet baby girl in a few weeks. That means Daddy is in charge of keeping Tzadok happy and comforted, which can sometimes be a daunting task even for the Mamma. Once again we thank everyone who is following Tzadok and his journey, your support and prayers keep us going forward through this difficult time. We will update more thoroughly when we return home in a few days.

A Dream Come True

       So much has happened since our last post that I don't know where to begin, but as they say there's nowhere like the beginning. After leaving St. Jude with no brain surgery, we went home for a month, which was the longest period of time we have spent at one place since leaving for Jacksonville last year. The little things in life constantly become interrupted by the need to leave for the hospital. Anyone who has had a sick child can relate that it's three days here, four days there, one night at a hotel, and so forth and so on. Needless to say, things were becoming routine again. I went to work; Rachel cleaned and home schooled, the boy's bickered. Ahhhh, the simple life. We could tell how many people were standing with us because Tzadok has done really great since leaving St. Jude last March. He has had very few headaches, and aside from the struggle to make sure he eats somewhat healthy all has been quite that is...until our Make-a-Wish trip.

       How do you describe a dream come true for a child? Insert Disney World, two limo rides, two plane rides, Give Kids the World Village, Sea World, Medieval Times, Islands of Adventure, and Universal Studios, and I think you'd be right on track. This vacation for our family was filled with so much awe and splendor that we still have a hard time comprehending everything we saw and experienced. For once, we were away from home and we wanted to stay gone. I can't possible detail everything we did on our trip, but I'll at least try to hit the highlights. I know over the next few days we will be posting some pictures on the Facebook page that will tell the story far better than the words on this computer screen can.

      So, we started out at Demos' in Lebanon, TN on Tuesday evening, which for those not familiar with Demos' is an Italian restaurant (Tzadok's favorite food). This going away party was held by the local branch of the Make-a-Wish foundation, and it was such a sweet time. Each boy was given a goody bag to help pass the time on the flight, and Tzadok received some extra special love from some volunteers namely a Buzz Lightyear cake, two awesome Buzz Lightyear shirts, and a handmade Buzz Lightyear crown. Everything from the meal to Tzadok's cake was completed and done by volunteers. The next afternoon our surprise limo picked us up and took us to the airport where we all got to fly for the first time.

Aside from the pat down I received for taking some apple juice on the airplane, the process was pretty smooth. Flying on the airplane was really as big of a deal as the rest of trip since none of us had flown before. Tzadok especially liked the experience.

     It was around 7 Wednesday evening when we finally arrived at
Give Kids the World, which was as awesome as a DisneyWorld resort
only without the crowds. The villa was fully furnished and the best
part was free ice cream, pizza, and Boston Market sandwiches. Oh, did I mention the ice cream! There were small rides for the boy's to enjoy, and we learned a little bit about the founder of Give Kids the World who was a survivor from the Nazi concentration camps.

He said that children should never lose their childhood as he had, and his vision was realized with our five boys for sure. We thought we were tired that night, but in a few days we would know what tired was. Thursday morning we found our way to Hollywood Studios in Disney World because a very special Buzz Lightyear was waiting for a private meeting with Tzadok. We got some special time with Buzz and it's something Tzadok will always remember. As awesome as Buzz was my personal favorite was Tigger and Pooh; however, Tzadok trumps me.

 Disney does so much for Make-a-Wish families that we were constantly running from attraction to attraction trying in vain to see all the four massive parks had to offer. Friday, we traveled to Magic Kingdom under the impression we would leave early and get some free dinner at the Villa, but we spent the entire day traversing the kingdom from corner to corner.

It was truly great and Tzadok liked the race cars best. Overall, Magic Kingdom was our absolute favorite, and Tzadok could have ridden the cars and the Buzz Light Year ride all day. Don't worry, we got back to the village in time to order pizza at the villa. Just imagine free pizza being delivered to your villa every night.

Yeah it was awesome!









On Saturday we slept in and rested most of the day. We ate breakfast and lunch at GKTW  and followed it with  ice cream of course. Then we did something Tzadok had been wanting to do since we got there. SWIM! We got the swimming trunks on and had a blast in the really awesome pool! The pool was 6 in to 3.5 feet. We played, jumped, and laughed for hours. Baby Zephaniah loved being able to wade and splash. They also had a cool splash pad that the boys played at before we left for the day. This was also the day when the boys got to make their pillows and Tzadok got to put his star on the ceiling at the castle.

He joined 130,000 other children who have been there and their isn't a picture I could get to describe how sparkly the ceiling and walls were. It's sad to think how many stars were there and how many children have suffered. We certainly are not alone. Tzadok's star has a bar code and every time we go and visit we can locate his star with the bar code.

After all the fun at the village, we then went on to Sea World. It was much later in the day and we just hit a few highlights there. One of the greatest things we did was let Tzadok pet the dolphin. He loved it!!! He smiled and loved being splashed by the friendly porpoises.  After feeding the rays and sharks and catching a few of the thrill rides, we headed back to the village. We got back to the village and of course ordered pizza and got tucked in by Mayor Clayton. Mayor Clayton is the mascot of the village and he's a sweet big rabbit. The boys loved it. We were all kinda iffy about it, especially Ebenezer. He didn't want that bunny (man in costume) to come in his house. I got in the bed and threw the covers over his head. Mayor Clayton was so funny and the boys laughed so hard. He spent extra time with Ebenezer, and he loved it! When it was all over, Ebenezer was so glad that Mayor Clayton came, and of course all the boys really enjoyed it! Sunday morning we got up early and went back to Magic Kingdom to relive all of Tzadok's favorites before heading to Epcot. We were so exhausted by the time we got to Epcot we just meandered around taking pictures and riding a couple rides. We didn't even get to half of the park. Oh, well we'll have to plan a return trip someday.

Monday dawned and we couldn't believe our trip was almost over. We had ice cream for breakfast and lounged around GKTW for most of the day before heading to Islands of Adventure. We wanted to go there for the Jurassic Park ride, which was an absolute blast. After spending some time at the Dr. Seuss splash area, we left Islands of Adventure for the highlight of our trip.

Medieval Times dinner theater was a two hour action packed adventure for the boys. Knights jousting, sword fighting, and eating a complete meal with nothing but your hands.

Interestingly enough, the knight we were to cheer for was the warrior priest, which scripturaly is where the name Tzadok came from. A warrior priest!!

Needless to say this vacation was a blessed time of renewal for everyone, and we can't thank the teams at Make-a-Wish and Give Kids the World enough for the hard work and sacrifice they make each and every day to make families like ours feel special and loved.

Happy Days!

Sorry about the delay, but the days fly by as we continue this long journey. As many of you know, we received some good news at St. Jude. Namely, that we don't have to undergo another surgery at this time, which is a major praise to our Most High and to each of you prayer warriors. Furthermore, we don't have to return to St. Jude until May, which would have been our next trip anyway. Tzadok's headaches seem to have gotten better, yet another praise, and since we're in the praise mode in two days Tzadok will be three!! It has been a long tough year for this sweet boy, and we are going to have a very big birthday blowout bash, at the only place to have birthday bashes, Chuck E Cheese. We thought about taking him to the park, but he still has bad memories of parks and he quickly shut that idea down. He, however, is looking forward to a very special Make a Wish trip to Disney World in a little under a month, so this year is shaping up to be one filled with healing, grasping for new norms, and some good ol' fashion theme park fun. Overall, these are happy days. We will keep everyone posted as we draw nearer to returning to St. Jude, but keep praying that these headaches stay away and that this tumor shrinks.  

Yet will we Serve Him

     This journey has been long and arduous for our entire family. When we think that we can begin to move forward we seem to take two steps back. Tzadok had the tumor drained on Wed. but the doctors were only able to get out about 1CC of fluid, which was not the news we were needing. So, we have to monitor Tzadok for two weeks and if he starts complaining of headaches again we will have to return to St. Jude for another MRI, and if the tumor has shown any growth Tzadok will have to go through another surgery. The doctors are afraid that there is some problem with the catheter or that there may be multiple cysts in the same location, which is hindering them from draining the cyst. Or, or, or...there are just so many or's. After this, he could still have to undergo another surgery to remove a partial amount of the tumor because there is no guarantee another catheter will have any effect what-so-ever. Please pray that Tzadok is spared from all this unneeded stress on his body; please pray for protection; and please pray that this tumor does not grow anymore because our Father is more than capable. These prayers are for miraculous intervention. The Father is the only one who can intervene now, and we need your voices in a chorus with ours. During each stage of this journey, we have clung to the hope that we were one step closer to picking up the pieces and moving on with our lives. However, it seems our life will reside in flux for the next year at least. Regardless of the next two weeks, Tzadok will have to go back to St. Jude for another MRI in a month with the same prospect list that I described above, so more anxiety and stress loom over our household. About the only thing we know for sure is that we will serve Adonai for now and forever. As we grow more weary with each passing day, that thought is the only hope we have left to cling to. Rachel and I echoed the words of King David at our dinner table tonight "though He slay me, yet do I serve Him." No matter where this all leads and ends, He is our only hope, and that is very comforting, indeed.

News and Waiting

       Well, we have been informed that there was about a millimeter worth of new growth, which is within the safety levels. Rachel and I are definitely relieved and we've begun to suspect over the last several days that we might have had a virus in the house, which could explain a lot. Additionally, we are trying to understand what is cause to worry and what isn't. Tzadok is ready to go home and we are not about to agree to a brain surgery with this new revelation of information. We do have an appointment with the doctor tomorrow, however, and we may decide to drain the cyst again since we are in town, but we're ready to get on the road and beat the terrible weather coming in tomorrow.

    Okay, so we have received some new information. It appears that Tzadok will have his cyst drained tomorrow around one in the afternoon. We are not for sure what is going to happen afterward, but please pray that enough of the cyst is drained to appease the doctors and everyone is relieved.

We're Here...Yet Again

   We just wanted to let everyone know that we made the trip safely with few incidents. The day has been relatively uneventful and for the most part it has been more of the same routine: register, access, draw blood, get anesthesia clearance, etc... Tomorrow will be the most important. The MRI is scheduled for six in the morning, so please remember Tzadok as you lay down and as you rise. Our little man sure does need a break. As a reminder, we need these scans to be stable to avoid any unwanted intervention. We are trying to figure out Tzadok's new normal and we feel that these scans will go a long way toward us learning more about how to care for Tzadok in the future. Most of all, please join us in rebuking any thought of a further brain surgery.

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.