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!
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