What a month we have had! In fact it hasn’t even been a month since we realized something was seriously wrong with Haley. One month ago we were waiting for test results from the EEG, the beginning of this journey. At one moment it seems like these last weeks have flown by because we have been so wrapped up in it, but a moment later it seems to have gone by so slowly because of all the waiting and wondering and sitting through days and nights of listening to Haley cry.
The moment I realized my child had a brain tumor and I couldn’t do anything about it will be one of those memories I will never forget. I knew the news was big and heavy but I had to be strong and move forward because I could not do a thing about it. The fact was she had a brain tumor and it was not going to magically disappear.
Meeting with the Neurosurgeon that memorable day we didn’t discuss our options, we discussed removal options. We were never asked if we wanted to do the surgery we only talked about when the surgery would be performed. We never talked about risks or specifics of the surgery because no matter the risks removal was necessary. The specifics of the surgery were not known then because the tumor was so large, she was so young and the tumor was so rare. We understood many many doctors would be consulted.
We still have questions about the surgery that we should have asked about before, but we didn’t know what questions to ask. We didn’t have time to think things through. We didn’t know to ask if her head was going to be bolted to a halo so it wouldn’t move during surgery. Only later did we discover extra stitches and ask why they had to stitch that spot. Did they measure the volume of the tissue they removed? That would be interesting to know. He used a vacuum to remove the tumor. Really? What a strange tool, but it seems safer then cutting her brain which was something we were very worried about. Luckily we can ask these and more questions now it just comes across as irresponsible asking after the fact. But then again so much was unknown.
The Neurosurgeon was careful not to give us specific information about the surgery because it seemed he didn’t know what he was dealing with until he got in there and saw it. The trust we put in his hands was huge! Trust that he would do what was best for her at that moment in surgery. Trust that his hands would have a good day and be steady and precise. This is the brain we are talking about. It shouldn’t be exposed and worked on. Though I am very happy that we have technology today and modern medicine that doctors are able to work on the brain.
We have experiences in life that test our faith. This has been one of those experiences for us. I don’t know why a 2 year old had to get a brain tumor. No matter the why, how we were going to deal with it and get through it was and is the test. I could sit around and cry feeling sorry for her or I could use my faith and ask through prayer that the surgery will go smoothly, that the Neurosurgeon will know what to do, that Haley’s body will recover well back to full ability…. but most importantly that we would be able to accept and understand whatever outcome was meant to be.
I’m one of those people who needs to know the outcome before so I can prepare myself so I can make it through. I was at peace with the surgery. I was not anxious or worried. I was calm and collected. I knew everything was going to be fine. I knew I was going to understand and accept how she was after surgery. This is something I am most grateful for.
I sat in the waiting room at the Huntsman Cancer Institute watching others. We were the youngest. Our daughter was by far the youngest patient we saw. Families were receiving hard news and crying together. It is a sad place. I wondered if they were looking at us feeling sorry for us being there. Somehow they knew we had a child in surgery and not a parent or grandparent. When the phone call asked for the parents of Haley everyone knew it was us without asking. I wanted to tell them we are fine. Don’t feel sorry for us we will be just fine.
We will forever be grateful for all those who offered prayers in our behalf. We know those prayers and that demonstration of faith is what has made this surgery the best possible outcome. That doesn’t mean everything is perfect with Haley and this journey is done. We are on this ride for a while but for now we have much to be thankful for.
She came out of surgery as strong willed as she went in. We didn’t know we had a funny Haley, but now we do and are loving those moments. We are thankful she is able to finally tell us when her head hurts and be happy when it doesn’t hurt (or doesn’t hurt as much). We are thankful we do not need to reteach her everything. We are thankful that each day gets a little better.
We have decided to only post occasional updates now when major events happen. We do not have big events or major breakthroughs to share each day anymore. (We actually are happy about that.) If you are following us through Facebook we will link there when we have an update.
Again, even though Haley is still recovering and we are still unsure of the path ahead we would like to thank you all so much for your kind words, acts, and faith through prayers. We are very thankful!