Once again sorry I have not kept this blog up to date. Maybe no news is good news but the more I think about it, I think we have really become settled in our new rolls as a Daughter with a brain tumor. We are trying to live a normal life. You notice I say trying. Every so often I am reminded of the sacrifices Ellie makes as a kid through this process.
If you know me, you know I rarely sit around and cry about our families’ situation. Dave and I try to do the opposite by enjoying life and laughing as much as possible. We try to make the best of the time we do have. Yesterday was an exception to this. When we woke up Ellie had a fever of 100.8 degrees (Children with Brain Tumors require a hospital visit as soon as they hit 101). Needless to say I crossed my fingers and hoped we would not hit the 101 markers. Unfortunately the crossing of the fingers did not work so well maybe I should cross my toes next time, by 10am Ellie hit 101. I called the Doctor and we ended up having to go downtown to children’s ER. Before we left Ellie said “why do I need to go down to the hospital, why can’t I go to a regular doctor like everyone else” I tried to explain it to her but she doesn’t understand and how could I expect her too. When we arrived at the ER Ellie’s pulse oxygen was low. They did the normal thing (or normal for a Brain Tumor Child) she got immediately hooked up to IV and antibiotics were infused. After a few hours, X-Rays, CBC blood Culture; Ellie had enough and wanted to go home. That wasn’t going to happen they had more tests to run before we could be released. They did a virus swap and Urine culture. Through all Ellie’s crying, poking, and prodding I would call myself a tough mom. It’s becoming like the norm like I said.
I finally had a moment of peace to open my computer to hopefully check email and catch up on the day online. I received an email from Ellie’s teacher that they were having an electronic field trip at school the following day. Yep the poking and prodding of my little girl, the emergency trip downtown doesn’t effect me but an email that my daughter will miss electronics day started the water works.
I have a hard time explaining it. It just I feel like Ellie deserves the world and should not miss out on anything in life. Don’t get me wrong Dave and I do our best to treat Ellie like a normal kid with responsibilities We expect her to do her homework even when she is tired, she has choirs, and responsibilities. Because of the reality of life is that if Ellie survives this brain tumor she needs to be able to understand what responsibility and reality is. But this email just set me off. It brought back memories of Ellie missing her Class Christmas Party the previous year because her counts were too low to go to school. I felt like a fool tearing up in the hospital after the doctors told me everything came back normal. I could not explain why I was so sad for Ellie. I think it was because this Electronics day was extremely important to Ellie. She has been asked me about every other day when the next Electronics day was. It is something she had been looking forward too and now she would have to miss it.
I guess we are unsure of how long Ellie has, obviously I pray daily that she will live a complete full normal long life. Sadly the reality is that Ellie’s life will never be normal. I am reminded of this every ten weeks when we have an MRI and am reminded that the tumor is going nowhere and as she grows older she will come across several more challenges in life due to the location of the tumor. But I am so sick of dissapointing Ellie. The disappointments she faces every time she misses out on a normal kid activity or something special at school because she isn’t feeling well. I guess days like yesterday I am reminded that it’s pretty impossible not to keep all disappointments from Ellie. What I find interesting is how Dave and I have two children and we raise both so differently. As a mom to a non-terminally ill child, I would typically say, “life is full of disappointments and you will be fine.” I am really trying to find a happy medium raising my children but not sure if I am doing anything right. There is no parent manual out there (well there are several books but they all contradict one another). But there is for sure no manual on how to raise a child with a brain tumor.
The one thing I do have to say is that Dave and I were very blessed with Ellie. She is one amazing kid. Every week she wakes up early so that the nurse can come and draw labs, and then she goes off to school. Then the following day she wakes up early so the in home nurse can give her chemo, and once again she goes off to school no complaints. I wish I could take credit for how awesome she is but I think its all her. We are very blessed.
P.S. We were sent home yesterday with all tests came back normal, so we thought. I received a phone call from the doctor that they found some bacteria growing in Ellie. They are hoping the antibiotics they gave her yesterday will take care of it. But we need follow-up tomorrow. We need to follow her closely to make sure that it knocked the bacteria out. But for now we are feeling blessed that we are able to sleep in our own beds.
A mother with a battle ahead of her.