Dear Emmersyn,
The past two days have been hectic. In the midst of the first winter snow storm with temperatures of -19 degrees and falling snow, we drove the 4.5 hours to Denver for your MRI. We left 5.5 hours early, but we should have left about 6 hours early. We ended up being a little late for check in for your MRI. It all worked out in the end, and you actually went back for your scan at your scheduled time due in part to the amazing nurses at Children's Hospital Colorado. You did so great on the drive despite not being able to eat or drink anything. You were cooperative with the check in process, and didn't even cry when the nurse took your vitals (which is a great accomplishment for you). You went out easily, and I got to hold you until you were asleep. Then Daddy and I were ushered to the waiting room to wait until your 3 hour scan was over. Its never easy to leave you with complete strangers, and I always joke they should give me your dose of anti-anxiety meds and give me a bed to sleep in next to you until you wake up. You are so much stronger than me! About 2 hours and 45 minutes after kissing your face, the anesthesiologist came out to talk to us. They had planned on avoiding intubation this time and letting you breath on your own while under gentle sedation. Apparently you had different plans. You Coughed while being put under, and you coughed up a huge yellowish green glob of nastiness. Your Oxygen saturations dropped into the 60s and you had to be intubated after they aggressively sucked out your airway. The anesthesiologist was quite worried you may develop an aspiration pneumonia because of the episode, and she warned us to take you to the doctor with any sign of illness no matter how small. We were then taken back to see you in recovery. You were amazing and woke up very well this time (again another big accomplishment for you). We went to the Hotel for the night, and the waiting began. The following morning was the appointment with the Neuro-oncologist to get the results.
The good news is you have no brain tumors or new tumors in your spine. You do have UBOs or unexplained bright objects in you brain. These do not cause any problems, but rather are just supportive of the NF1 diagnosis. You optic nerves are tortuous and the right optic nerve enhanced slightly with contrast. Dr. Foreman assured us that he did not agree with the radiologist's interpretation and that this did not represent an optic glioma. In fact he explained that all individuals with NF1 have tortuous optic nerves, and this finding on your MRI was only further support of your diagnosis and nothing more. He did however recommend that you have a dilated eye exam every 6 months until you are 16 instead of once a year until 8 as we were originally told.
The bad news is that your current plexiform tumor continues to grow, although it is not growing fast enough to warrant treatment as all treatment options are strictly experimental right now. He further explained that while your tumor is operable, it would be a very complicated and lengthy surgery and all of the tumor may not be able to be resected. Plexiform tumors are aggressive and when disturbed, they tend to grow faster. By removing your tumor, we would likely cause significant nerve irritation which would lead to worsened pain, not improvement like we'd hoped. So my hopes of having the tumor removed so we could be done with it, were smashed. I knew that sounded too good to be true. The only redeeming part of the plexiform discussion was when he stated that the increased pain from your plexiform tumor is not from malignant transformation of the tumor. Also, your tumor should slow down in growth after you turn three, which is promising.
Now for the ugly news. There is nothing right now we can do to fix your pain. Essentially, it is something you are going to live with. We discussed several nerve medications, but they all seemed to have side effects that are worse than your pain in the first place. Given you right leg pain, Dr. Foreman thought it was very likely you have a plexiform in your right hip or thigh that may be causing your right leg pain and weakness. You may also have a slight length discrepancy with your right leg being a little longer than your left. Your right leg is also slightly bigger which can be a sign of a tumor stimulating the nerves. He offered a scan to check it out, but stated that he did not recommend it since there was nothing really to do about it right now anyway. So the only thing I was hoping we could solve with this trip was your pain, and it seems like we are back at square one.
There was so much to be thankful for with these scans, yet I remain disappointed that we could not alleviate your pain. It just proves that we have such a lack of knowledge into NF and plexiform tumors. Someday, through research there will be better treatment options for NF, and maybe even a cure. Until then, I will continue to fight for you and push for more to be done. This week, men landed on a moving comet in space, but we still have no real treatment options for the thousands of Americans suffering with NF. Despite your pain, you will continue to shine. There is nothing you cant do my love, and I will be here for you through it all.
Love you always
Mommy
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