The ink had not hardly dried on Dana's entry here, when we got a sharp reminder of the "fear blanket" that you live under when you have a child with cancer. As Dana alluded to, Stuart has been atypically exhausted recently. We have discussed it on several occasions and we both agreed that it was likely due to starting back school and Stuart's super pressing therapy schedule. Yet, it is tough not to be a little paranoid, especially when Stuart has seemed very irritable at times. Thus, when early Wednesday afternoon Stuart started complaining of "headaches" in the back of his head, Dana decided to call the hospital. Stuart has never really complained of pain and in this case he was literally jumping up and down, hitting the back of his head where his tumor site was, saying "make it go away! make it go away!" Stuart's nurses called back and said they would examine him first thing in the morning and if they saw fit, they would get him in on the "unplanned" MRI schedule. Talk about a sleepless night.
I will skip to the punch-line: Stuart did have a MRI of his brain on Thursday and it was ALL-CLEAR. Thank God. Because this MRI will now suffice for the one we had planned for next week, Stuart's next MRI will be the first week of 2012! It turns out the headaches and irritability were in-fact symptoms of a major sinus infection in both sinus cavities that showed up on the MRI, so Stuart is now on antibiotics for the next 2 weeks. Obviously we were super relieved to hear this news! We can only hope that Stuart continues to progress the next 3 months as much as he has progressed in the last 3 months. Just because 'all is well that ends well' doesn't mean that Thursday at the hospital wasn't a little crazy. Bo was off from school for the Jewish Holidays and that turned out to be a huge blessing as he came to the hospital with us- I am not sure if we could have gotten Stuart to the car otherwise. Since there was a chance of a MRI with anesthesia later in the day, the boys did not drink or eat anything- halfway to the hospital Bo started saying he was starving! When you haven't been to the hospital in a long time, all of the emotions seem to come back like a flood. When we got there, there was a table set up for September-Pediatric Cancer awareness month. I was super proud of Bo, who went over and after reading some of the material asked for help in putting on a Yellow Ribbon, which he said was "for Stuarty." Stuart also put on a ribbon and the two of them went into the playroom to play. When Stuart was less than cooperative a little while later while being examined, I got a bad feeling in my stomach but one of Stuart's main doctors, Dr. Khakoo, said she was not overly concerned. Nevertheless, she scheduled the MRI and off we went to the IV room to get prepared. Even though Stuart was furious that he was going to have to get an IV and then go to the "bad room" for pictures, he was still able to pep up to sprinkle some humor on one of his other doctors, Dr. Gilheeney. As Dr. Gilheeney came by to see if he could see Stuart, Stuart hid behind my back. Dr. Gilheeney gave both Dana and I a hug and then remarked about how awesome Stuart looked. He called out, "hey Spider-Man, come out so I can get a look at you." To which, Stuart did in fact come out to say, "Hey, I know you, you are Cheese Teeth Bear!" Although I am pretty sure that is the first time Dr. Gilheeney has heard that one, he seemed pretty amused. We have met some pretty amazing people at the hospital during Stuart's cancer battle and Thursday was no exception. Post- MRI, Stuart is always a little lifeless while he comes off the anesthesia drugs. We were in the waiting room waiting for the results when one of the new Fellows came out to give us the great news. Stuart was still mostly sleeping and his head was facing toward a middle aged lady that was there with her son. When the Fellow had left, the lady made her way over to talk to us, as she must have overheard that we had good news. She had seen Stuart's scar on his neck and had guessed correctly that Stuart had Medulloblastoma. She wanted to share that her son had been diagnosed at age 5.5 and that was now 7 and a half years ago. Her son is now thriving in school, has tons of great friends and excels in lots of extracurricular activities. She could not have been more uplifting. I was about to ask her what she was doing at the hospital with her son since he was doing so well, when she exclaimed that in her life "lightning had struck twice." She was now at the hospital with her other son who was an older teenager and he had been recently diagnosed with some rare form of cancer. Although we don't know this woman at all, her strength and character were inspiring. I hope and pray that her oldest son will be ok.
MRI's are difficult days for me. Although, I am super optimistic in Stuart's long term prognosis, I am keenly aware that on MRI days, our family's day to day life can be turned upside down on a dime. This time, in the waiting room, my mind wandered back to Salt Lake City, specifically the meda-vac flight we took from Jackson to Salt Lake. I remember the 2 para-medics being unbelievably caring and capable. Yet, two comments that were made a little while after take off will always be burned in my mind. The plane was equipped with head-sets and the para-medics were using them to keep in contact with the head of the Pediatric ER in Salt Lake. Although, they had told us to feel free to listen in, I think after a while they must have forgot and likely thought that we weren't listening- but I was. First, the female para-medic started explaining to the Salt Lake ER that it seemed like to her that Stuart was going in and out of constant seizures. Second, the two paramedics were talking with each other about brain tumors in toddlers. They were saying how precious Stuart seemed and how unfortunate it was this had happened. It seemed as the man had never been involved in a meda-vac for a pediatric brain tumor patient but the female had. She told him that while she thought Stuart would clearly get stabilized for surgery and treatment that the long term prognosis wasn't great. I had a hard time that night digesting either of these comments. I think after you have heard things like that, the elation you feel when you hear the words "No Evidence of Disease" is even that more powerful. While Stuart seems pretty oblivious to what the MRI pictures are all about, he is definitely a pretty smart little guy. When we got on the elevator, I told him that the doctors said "he was doing Great!" He got a look in his eye like he knew Exactly what I meant by that and he showered me with kisses. He then said he wanted to go home to find Bo (Sha-Sha had taken him home) and Junice, play some legos, and have some dinner. Work has been a nightmare recently for me, and in a town basketball league game a few weeks ago I broke my hand so I am in a stupid cast for another 3 weeks. But, it is times like Thursday that I am reminded just how fortunate we really are. Life is Good!
One word about Bo. When Stuart was first diagnosed, we read lots of literature about how terribly hard this ordeal could be for siblings and how we would likely need some professional help for Bo. To say that we are proud of Bo's reactions and emotions relating to his brother and our family's ordeal would be a massive understatement. He is a very special little boy and Stuart is super lucky to have him by his side.
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