Ups and Downs

It has been a few days since I updated the blog, but as always it has been a busy few days. As many of you know, after Tzadok's first treatment he spiked a fever of 103.2 degrees. Anything over 101 we are supposed to go to the ER because of the port in his chest. So we spent that whole first night in unease and tension because if this was how the whole treatment was going to be we didn't know if we could make it through. Thankfully there was no infection in the blood and the fever was linked to the cold that had been running through our house. The second treatment went more smoothly, and we were even beginning to become more encouraged that we were going to make it through this process; however, Sunday rolled around. Treatment this week was supposed to be from Sun. to Wed., but the proton machine went down, on Sun. We were a little happy with this news initially because Tzadok was given an extra day to recover from the bad cold in the house. Monday then came around and the proton machine was still malfunctioning, so the radiologists were concerned about the large breaks between treatments for Tzadok. He was now going on a three day break with a four day break coming for the Thanksgiving holiday. In short, the doctors wanted us to consent to a one day use of radiotherapy instead of proton because it would be up the next day. Everyone kept saying one time isn't going to make a difference, and with all respect they are probably correct, however I had a feeling that this would not be a one day consent so I declined. Monday night came around and we were in another set of deep conversations with doctors because the proton machine was still not functioning and we found ourselves being counseled to agree to radiotherapy again for another day. For anyone reading this blog in the future there are two different proton schedules, some institutes use a 28 day treatment cycle yet most use a 30 day treatment cycle. Research between the two methods have shown that there is little or no difference between the two cycles. St. Jude and the University of Florida follow the 30 day treatment cycle, so we figured that we were being counseled this way because this is how it is done at these institutions. Essentially, radiation must build up in your body to achieve the desired effect and with the long breaks there is a concern that the radiation is not going to be as effective for Tzadok; however Tzadok still has 28 treatments to go which is a full regiment for some institutes that treat this same type tumor. Taking all of this information in to account we refused the radiotherapy because we are in Florida for proton therapy not x-rays. On a side note, Dr. Danny is an amazing radiologist. He has been very supportive and respectful of our decisions. He has went out of his way to make sure our voices and concerns are heard, and he has made us an important component of Tzadok's treatment, which warms our heart. Even though we didn't agree on this particular situation, he never made us feel wrong or bad about our decisions. That is the sign of a true professional. I know this has been a long post, so in summary Tzadok has had two treatments; he will start proton again tomorrow and he will also have a treatment on Fri; we've been in and out of the ER; and our proton plan has changed a bit, but the Father is still in control. Among all the ups and downs, we have met some precious people here. All of them are fighting for their lives like we are, and in the next post I will hopefully get to introduce them to you. Well, may you all be blessed and sleep is on the horizon for me.