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.