The chest x-ray....the most common place for orbital rhabdo to spread is the lungs. JR will have a chest x-ray with every MRI, just to be sure that all is clear. The x-ray is a welcome change from the CT's he has had with scans in the past, because it is far less radiation to JR's chest. Labs...standard...blood counts indicate how the body is functioning and can provide red flags if anything is amiss (and can particularly indicate blood cancers, for which JR is at a slight increased risk from his chemo). The echo...while JR was in treatment he needed heart echos before every administration of the chemo doxorubicin, since one of it's side effects includes weakening of the heart. Now that JR is off-treatment, he only needs echos annually, yay. The effects of "doxy" can be "late", meaning they could show up in the years to come after treatment. :( Heart failure is a common late effect of doxy. I try not to dwell on the "what-if"s" regarding JR's future, and, quite honestly, our life is so rich and blessed right now that I've been doing a pretty good job of staying in the present!
That being said, with the "present" now including preparing for scan day, I must say that my "scanxiety" has been mounting as the big day approaches. It's very difficult waiting for results to confirm that our baby boy remains cancer free. But with 3 clean scans under our belts, my confidence is higher than in the earlier months. Please send up prayers for JR this week, and for all of us on scan day. Beyond the emotions and anxieties associated with waiting for results, scan day is Really. Freaking. Hard. At 2.5 years old, JR may be at the worst possible age to undergo a day like the one he has ahead of him. The hardest part is anesthesia, and all things related. JR can't eat for 12 hours in advance of anesthesia, or drink for 4. JR is VERY routined. He wakes at 6:30am, and expects to be eating by 7. Of course explaining to him that he cannot eat is pointless, so it's a game of distraction until it's time to leave for the hospital. Right now JR's anesthesia is scheduled for 11am (UGH), but I am pushing hard to get him going earlier. The most dreaded part of the day is the process of getting JR under anesthesia. It only takes a couple of minutes, but it's excruciatingly painful to hold my child while he screams and writhes in fear and panic, trying to overpower the drug that's pulling him under. It is a strength greater than myself that gets me through these minutes of intense emotional suffering each time. I imagine it will be further difficult this time around, as I hold JR -who is mighty strong, on top of this 9-month belly. Prayers.
In other JR news, JR now spends 6 hours per day as "J.RRRRRR". At his opthalmology appointment last week, JR completely failed his vision test in his left eye. The remedy? Six weeks of daily "patching", 6 hours per day (3 in AM, 3 in PM). JR's vision is likely being affected by his "droopy lid", caused by his radiation treatments. Quite honestly, we are extremely fortunate that 28 days of radiation to the orbit of his eye did not destroy his vision in the first place. Amazing science! The doc said it's not uncommon for people to favor the strong eye in the event of a drooping eyelid, and vision loss can happen rapidly over a short period of time. The good news is that it can also be restored quickly, and patching should do the trick. JR's strong eye is patched so that he is forced to use only his weak eye when patching. Again, 2.5 years is not a great age for this process. When it's time to patch, JR runs in the opposite direction yelling "No patch please!", and sometimes cries. We now bribe, er, REWARD him with a frozen M&M each time he puts the patch on, and that's helping prevent complete meltdowns that were commonplace the first couple of patching sessions. Once the patch is on he does pretty well with it. If he's distracted enough he's fine, but when he remembers it's on, and when his eye starts to get tired, he complains and asks to take it off. Poor buddy. An "eyelid lift" is a current consideration among JR's team.
In great JR news, after 9 months of weekly speech and physical therapy sessions, JR is meeting all developmental milestones! His progress is evaluated every three months, and at his evaluation meeting last week, it was determined that JR no longer qualifies for services! AMAZING. Our little superhero is doing incredibly well. We are so proud of him, and just amazed by him every day.
On a typical day, JR is just busy loving life. He is an adventurer who loves to be outside, spot animals in the wild, and play at the playground (he particularly loves crossing bridges and going down slides). He loves music, dancing and singing (and has brought Brandon and me to tears with his sweet innocent voice). JR also likes quiet independent play time, and loves his books. He is completely obsessed with Curious George, and we read "George" books multiple times daily! He continues to love playing with his trains and matchbox cars, and has an incredible imagination -I think he entertains himself incredibly well for his age, lucky mommy!