What was suppose to be a relaxing nice family weekend has turned into a very stressful weekend of my thoughts taking over my brain. First off I am giving a very short brief summery of how we discovered Ellie had a brain tumor when she was 6 then the stress will become clear.
When Ellie was in 1st Grade she used to wakeup and cry she didn’t want to go to school every day. She would then proceed to the bathroom and throw up maybe once a week. (I did this when growing up also so I thought nothing of it).
Over Christmas break she had a few headaches during the night and that caused us to call the doctor and make an appointment. She had a catscan and she was sent immediately to the Children’s Hospital downtown. They then immediately started monitoring her till the next morning when emergency surgery was scheduled. During this less then 24-hour period we where told that Ellie’s brain was filling up with cerebrospinal fluid due to her tumor obstructing the fluid from draining. They informed me if I waited even another day before brain surgery Ellie would have died. Fast forward 7 years to the past few weeks. Ellie has developed symptoms of being fatigue and headaches that have been progressively getting worse. Saturday morning, she threw up what I believe is cerebrospinal fluid. I immediately paged the surgeon on call and started hospital packing. Needless to say there where lots of tears in our house while we waiting for the phone call. And then the On Call Surgeon called me back to discuss what was going on.
I explained what Ellie’s Symptoms and background and his response was we will not be changing Ellie’s surgery it is scheduled for Tuesday unless there is an emergency. He then said I don’t believe this is an emergency because she has not had the symptoms long enough. Then once again the choice was ours to make (BTW I’m tired of making choices) He said we could bring Ellie down to the ER they will exam her do a quick MRI but then they would monitor her in the hospital until Tuesday morning. (In short he said she would just be laying around in the hospital and that would add onto her stay) or If I felt comfortable enough I can just monitor her at home and if things got worse I would bring her downtown. He recommended in a non lawsuit kind of way that he would choose to stay home. I can guarantee that 90% of parents would say we are heading down to the hospital and would say your crazy if you don’t go. Well I am the 10% and I am crazy parent, or just a parent that has been through an incredible amount with her child and understands way too much about my daughter and brain tumors. I decided to keep Ellie home and commence family weekend. If Ellie went down to hospital she would have to go through ER and who knows what she would be exposed to and then if she got sick surgery would have to be put off even longer. But not only that we are being selfish as a family. It’s a hard thing to swallow but you never know if this could be our last weekend as a family and we are going to make it count. Another factor was Ellie begging me and crying that all she wants to do is snow board before surgery and spend time with family. Well guess what this crazy Mom has taken her daughter with a brain tumor Snow Boarding.
I am sure I am the topic of many conversations and being critiqued right now but please do not judge unless you have lived a day in our shoes. I obviously would cancel everything and head to the hospital immediately if things where getting worse or if we could not manage Ellie’s headaches. Ellie and I had this conversation and I informed her how serious it is to tell me of any changes.
Ellie had a burst of energy and excitement Friday Night and again Saturday morning that has been missing for about a month. It was so nice to see. She has gone through so much and one day of care free fun, no Medical talk, just being a normal kid is exactly what the doctor ordered. When Ellie was 6 my decisions would have been completely different. She did live in a bubble for sometime but as we have done this for 7 years I have realized over time that Ellie needs to live her life because there are no guarantees. Although it seems that I am taking this very lightly I promise you the lack of sleep and my brain have NOT taken this lightly at all. Every scenario has run through my brain, my job to worry, but it is also my job to keep it to myself and let Ellie open her wings and fly. And just have fun.
We had a fantastic time at Wilmot for the day, then we got back to my parent’s house and later that night Ellie was laying around again in pain, Ellie decided to spend last night at my parents with her cousins. I received a phone call from my mom this morning that Ellie was lethargic, had a bad headache, & threw up again. So the call began again to the hospital as I prepared to meet my mom at Children’s for an over night stay. Once again a different Doctor on call called and he was not too concerned because we are scheduled to be in so early tomorrow. He said since we would be in the hospital within 24 hours he would not recommend coming down, let Ellie enjoy her last night in her bed for a while.
Some of you might not be aware that I have MS and a trigger is stress. Tell me how I am supposing to keep my stress levels down. I am hoping that my adrenaline kicks in like the first time Ellie went through this and I just get through this without a MS flare up. We leave at 5am for the hospital, I’m fortunate enough to have family close by to be at my house to take care of Jake and the Dogs.
The only thing with Ellie feeling so lethargic and having headaches it reaffirms that we made the right decision to have surgery.
Thank you for letting me vent, this blog helps me so much through everything. I will try and put quick updates as tomorrow goes on. It’s going to be a long day and I appreciate all the prayers. Keep the prayers coming we need all of them. I added the photos from Snowboarding this weekend and time with Ellie’s cousins. It was so nice to see her smile and having a good time.
A mother with a battle ahead of her.