That is all selfish, I know. Mal has her own dreams, and one day I hope she will get to see them come true. For tonight, my dreams, those of her mother, brother, friends, relatives and so many other kind strangers - they don't matter. Jesus has a plan for Mal. I am at peace with that. I pray that His plan is in line with mine, but again, I am being selfish. More than anything, I pray for the strength to accept the Lord's plan for Mal, whatever that may mean 24 hours from now.
Mal had as adventurous of a day as a kid tethered to a bed by four IVs and one brain drain tube can have. She was allowed by her daytime nurse to sleep on her belly for comfort, and in return she had a bowel movement that shot up her back. For those of you that do know Malorie, when I tell you this you will cringe - it got on Godi and Elmo. There was a two hour period where she had to be without her blankets and stuffed monsters. Thankfully, Jenna again came to our rescue and got the secret replacement Godi (the exact same blanket that she carries around, only sent from her cousin Kaileb who outgrew his) from home while the real ones were being washed.
We have had to give Mal several doses of morphine today, as her head has really been bothering her. She finally, for the first time, told us that her head hurt today. We have been trying for over 7 weeks now to find out what was hurting her. Also, her night nurse, who we have been extremely blessed by for three straight nights (the same ones that let us hold Mal last night) got Malorie a "Big Girl Bed" to sleep in tonight. Mal was excited to get out of the crib, and the bed will allow for Rachel and I to take turns nuzzling up next to her all night. We obviously have to be weary of the lines going into her, but I think we will be mindful.
I got to meet with the Neurosurgeon leading the team performing Mal's surgery today. Dr. Smyth is a great man with a very accomplished record, and I have the utmost faith in his abilities. He told me that he is fairly confident that Mal's tumor is an Ependymoma. These types of tumors are like plastic, and they can shape shift into any loose space in the brain and spinal column. He believes this because of the location and the way it is growing in her. They are sometimes benign and sometimes malignant. He also told me that the top half of the tumor is floating in fluid, so it should be relatively easy to get out. However, the bottom half is up against the base of her brain, precariously positioned against a bed of nerves. This half of the tumor may come out really easily, or it may be attached tightly to the nerves. Mal's long term neurological status largely depends on how tightly nested the tumor is in there. However, because of the rate of ependymomas that are malignant, he will likely err on the side of aggression in removing the tumor, meaning he will forsake long term impairment in order to remove the entire tumor. At the end of the surgery, Mal's skull will be put back together using titanium screws and plates that will remain with her for life. If the tumor is malignant, she likely will not go to radiation therapy for nine more months, as the brain does a significant amount of development between the ages of two and three, and we wouldn't want to stunt that growth. If this is the case she will get frequent MRIs between now and then to ensure the tumor is not returning.
I want to say that I am at peace. I can't. I already wrote it, but it is a lie. I am scared and sad and feel beaten down. But then at times my spirits raise and I know it will be all right. However, there are countless other parents going through tough situations like this. There are numerous families here in the PICU that are fighting for their babies. We can't all win the sick kid lotto and have our dreams come true. I will pray for them to be strong tonight too. If they can be strong, so can Rachel and I.
Mal will be OK.