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!

Memphis Day 7

It's hard to believe that it has already been a week since we have arrived in Memphis. Tomorrow will be another early day for Tzadok and his brothers. There will be more tests for Tzadok's endocrine levels, and we will have to make our final decision about the nuclear PET scans scheduled for Tzadok. As an update, Rachel and I have been opposed to these scans because they won't directly benefit Tzadok. They are strictly research, and we don't feel that Tzadok needs any extra radiation on top of the multitude of scans he has already underwent coupled with the long road of proton radiation coming down the pike. So we will probably opt out of these scans, which we have discovered is perfectly okay to do. Last Friday we had a great visit with Dr. Merchant and we voiced our opinions and concerns over a great many topics, and he gave his best advice some of which we agreed with and some not so much, but we feel that a trust has been established between us. We will be draining some more fluid from the cyst this week, so we can make sure the catheter is working properly and, to be sure, there is still plenty of fluid to drain. We had thought that the entire cyst had been drained during the surgery, but it wasn't because of some nasty side effects that could take place from the sudden draining of the tumor. This was one of the interesting facts we learned about on Friday. Aside from that, everyone remains in good health and Tzadok continues to be given strength from the Father, but it has been an interesting weekend to say the least. First, the extended stay hotel that we stay at decided to place dirty linens back on the beds instead of clean linens, which was actually disgusting. Then our bank decided to freeze our account for some unknown reason, so we spent the weekend in downtown Memphis with no way to pay for any necessities, which was a hassle that will hopefully be remedied tomorrow. Please pray that we are not side tracked by these little annoyances, and that we remain ever focused on our handsome son.  

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.