Well, it has been a while since we have posted on Zach. No news is good news, right? Things have been going wonderful for Zach. We have been doing EUAs (eye exam under anesthesia) every six weeks. We have been doing tests upon tests to find out more about what type of retinoblastoma Zach has. It is more information than our non-medical minds can understand, yet we are learning more and more with each visit to St. Jude.
I thought I would take some time to let everyone know in detail as much as I can understand where we are at with Zach right now. If this does not make sense, it is probably because we do not understand it enough to explain it to everyone else, but we will try.
In January, we found out that “round one” of Zach’s genetic tests came back negative. This is great news. When we say genetic tests, most people get confused thinking that the genetics show if Zach inherited retinoblastoma from us. However, when we say genetic testing for Zach, we mean we are trying to figure out whether Zach has hereditary or nonhereditary retinoblastoma. If Zach has nonhereditary RB, then he is not at risk for getting RB in his good eye, and the risk of him passing it on to his children one day is slim. On the other hand, if Zach has the hereditary form of RB, he has a RB1 mutation in every cell of his body. This makes him more likely to get retinoblastoma in his good eye before the age of 5 (the time in which his eye is growing/developing). He also would be more susceptible to certain cancers, particularly in his teenage years. Finally, he would have a 50% chance of passing on retinoblastoma to his children.
As you can see, finding out what type of retinoblastoma Zach has is important. Hearing that his first round (there are 3 rounds) came back negative is GREAT news. We found this information out the week before we went back to St. Jude for another EUA. During his EUA, though, a small spot was found in his right eye. Zach’s doctor, Dr. Wilson, was certain that this spot was not there before, but he also was not certain that the spot was retinoblastoma. Acting on the side of caution, he went ahead and lasered the spot as the benefits outweighed the risk of leaving the spot alone. This new development threw the negative test for round one of genetic testing up in the air. Most hereditary forms of RB is found in round one. Dr. Wilson ordered some more different types of genetic testing.
Fast forward to our next visit in February, we received the results of his second round of genetic testing which were also negative. Again, this is great news. However, all of Zach’s doctors seem to believe he should be hereditary. In addition to proceeding with round 3 of genetic testing, they also started another type of genetic testing to look for the RB1 mutation a different way. When we met with Zach’s doctor after his EUA this time, no spots were found, and Zach’s spot from last time was still considered suspicious. Dr. Wilson also told us that he suspects these new genetic tests to come back negative. Our next step at our next visit (April) will most likely include yet more genetic testing in which they will send out new blood work to a specialist in Toronto.
So where does that leave us right now? Well, we are praising God that even though everything is pointing to Zach being hereditary retinoblastoma, they have not been able to find where that is the case. At the same time, we also feel unsettled, anxious, nervous, and any other words you could fit there. We are relieved (and not surprised) that these tests keep coming back negative, but we still seem to be waiting with our breath held for a new spot to show up. Maybe it is because every medical person we speak to at St. Jude firmly believes that Zach is and should have the hereditary form of retinoblastoma. After all, everything points to it from him being diagnosed under the age of 1 year old and the tumor being so large at such a young age. We also trust Zach’s doctor, but even he has said at this point that Zach seems to be falling into a gray category they are not sure about yet. He says that everything points to him being genetic (hereditary), but they have not found it yet. It is at this point where he shrugs and throws his hands in the air. (Have I mentioned how much we LOVE Zach’s doctors?!) We truly believe that Dr. Wilson and Dr. Brennan (Zach’s oncologist) believe as we do. We know that science can point one direction, but ultimately, it is God who has the say in these things. Science is wonderful, and we are thankful for it. Our trust is not in science, though. It is in our God.
Now, we are waiting until our visit in April where Zach will have another EUA, a MRI, genetic meetings, speech therapy, and occupational therapy. It is going to be a busy visit, but we love seeing our St. Jude family!
We ask that you keep praying for Zach. We are thankful for how God is using Zach to impact people. We are thankful, most importantly, that God has the final say in what goes on with Zach and not anything or anyone else.