Today Andrew begins a new medication, a MEK inhibitor called trametinib, to hopefully reduce the tumor.  It is not a chemotherapy, so on a good note, he will not have the typical chemotherapy side effects.  It does, however, have its own long list of possible side effects, some major, but more commonly manageable ones such as skin rashes and, weirdly, ingrown nails.  He will be on the medication as long as it seems to be working and he is tolerating it.  Our prayer is that it would reduce the tumor load so that he will not be experiencing headaches and seizures and can regain some of his physical stamina again, which has been significantly lower since his long hospitalization over the holidays.

I’m sure many of you are wondering why traditional chemotherapy or radiation is not used.  It took many months for me to really understand why the doctors did not jump to a treatment.  My understanding is that because of the diffuse/widespread nature of DLGNT, radiation is not recommended, especially for kids, and chemotherapy treatment can become ineffective after a few treatments, sometimes even causing the tumor to mutate into a more aggressive form. Trametinib shows promise for many cancers with the BRAF mutation such as Andrew’s, and even though his disease is rare, it has shown positive effects in shrinking or delaying progression with many of those who have taken it. 

We have no answers as to why Andrew experiences these “episodes” of sudden and frequent vomiting with headache every few weeks, which keep sending us back into the ER.  We have considered shunt malfunction, seizure activity, and of course tumor irritation, but the doctors really don’t know. The neurologist is still gradually increasing the dose of the second seizure medication, and we have another new medication to try that may possibly help the brain to prevent these episodes, but it’s all a game of trial and error. It also means one more daily pill and one more thing for Andrew’s body to tolerate. Please pray that these episodes will cease.  They are so disruptive and stressful for us all and have interrupted many family plans.  Please especially pray that Andrew will be blessed with feeling GREAT on his birthday (March 20) and for his upcoming spring break (week after Easter).  He still feels upset about the fact that he spent his entire spring break last year and part of his Christmas holiday in the hospital.  Please, God, no more health issues during vacations, holidays, or birthdays for this poor kid!

It's hard to “do” normal life with so many appointments and medical concerns disrupting our daily routine.  Please pray we can feel the peace of God and find our new “normal” with the joy of the Lord as our strength!  Thank you for praying for us and bearing our burdens with us.  

2 Corinthians 1:10-11 
10 He has delivered us from such a deadly peril, and he will deliver us again. On him we have set our hope that he will continue to deliver us, 11 as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many.