It is with a very heavy, broken heart that I share this next update. Unfortunately, we did not get any good news on our visit to Mayo. We actually received nothing but bad news. That remaining spot that our surgeon questioned 6 weeks ago, was in fact a small piece of tumor. The heart breaking part is that it is growing back more aggressively than anyone hoped. :( It is currently the size of a marble (2 cm). Our doctors are concerned with how much change that small spot made in a 6 week period... For the kind of tumor that Hayden has, its acting more aggressively than it should. Which dmeans we are going to have to do another surgery! :( The thought of another surgery, re-living that horrible week again, physically makes me sick!! All of Haydens hard work with therapy... making steady improvements with his walking, arm and now speech... Is going to be halted. We will be starting back at square one! In addition to surgery, we are also looking at 12 months of chemo to follow. Again, Im sickened to type this out! To top things off, another challenge we are facing is that Haydens MRI detected two different areas of fluid in his brain. One pocket on the inside that isnt draining properly and some on the outside of his brain. Apparently, this is not an easy fix. If they put in a shunt to drain the inside fluid, it will relieve the pressure, but instead create room for the outside fluid to increase. The only semi good news is that Hayden is not showing any symptoms of this (as of right now) so its a secondary concern. After his surgery, the fluid is expected to shift and move around... So dealing with that is currently on the back-burner. Like I said, nothing but crappy news!! Life just seems so unfair at times. Im mad! Im upset! Im emotional! We feel like we are just starting to get back into a normal routine. Hayden is happy and gaining mobility. It pains me to have to put him through another surgery! The chemo regiment will be new to us but of course I dont really expect good things. As of right now, Haydens surgery is scheduled for next Wednesday, but we are going to possibly move it back to the following week. This will depend on the availability of a specific OR that we need. We need so many prayers right now! We are very overwhelmed with all of this new information. Some days it feels like Im running out of tough mommy faces for Hayden. As we sat in the waiting room for hours of our many appointments, I spent some extra time looking around this morning. The pediatric area is such an overwhelming place. There are so many kids with wheelchairs, feeding tubes, oxygen masks, scars, shaved heads, etc. It was a reminder that we are not the only parents struggling with a trying situation... even though at times it feels like it. Please pray for Haydens tumor to stop growing, for the fluid in his head to drain properly, and for his overall strength to get through another difficult surgery!
Posted on: Thu, 18 Sep 2014 02:38:59 +0000