Lucy did fine today. Rather well, to be exact. She had a long, long day with appointments starting at 10:00 and not letting up until 3:30. I actually cancelled the last two of the day because she was worn out. And so was mommy. Mine was more of an emotionally challenging day. I'm still really struggling to accept Lucy's cancer and the upheaval it has caused in our family. Today was an I-just-want-to-punch-the-wall kinda day. I held it together pretty well until I got home and then I cried most of the night. I'm mad, angry, frustrated,
Today we found out that we have at least one more week on all of these antibiotics. That means getting up 3-4 times a night for medicine changes. DON'T GET ME WRONG!!!! I would gladly do this for months if it would keep her out of the hospital, but we had our hopes up that we would be stopping them tomorrow. Oh well, just a small price to pay to get my baby well. And speaking of that....did I mention cancer sucks? Well it does. It does for Lucy and it does for the hundreds of other children being treated right now at St. Jude. It sucks for the millions who have been treated for it, are struggling with or have died from it. I just don't get it. Children?! It's all just too much for anyone to have to go through. Really, it is.
Everyone keeps telling me that St. Jude is a happy place. That the kids love being there. I'm still waiting on that to start making sense. Right now I walk down the hall and see sick children, sad parents and breathe the heavy aroma of burdens to heavy to bear lurking in the air. Babies too young to imagine with cancer. Teenagers missing their high school years because of cancer. Kids like Lucy who look at their parents and say "Mommy, I miss my friends." Yeah, try dealing with that one.
There are so many mothers who make the St. Jude trip alone and desperately need friends. I'm just struggling to hold it together on a moment to moment basis. Much less helping someone else cope. And this is not my usual personality either. Even at Le Bonheur I found solace in ministering to other peoples needs. Right now, I'm needing some major ministering myself. I have met three sweet ladies, Hope, Tessie and Christina, and then another one today named Mary. They are all very kind and seem to respect my need for some distance. I met Hope, Tessie and Christina at Le Bonheur and we were able to form a friendship. Not a friendship based on desirable terms, but a friendship none the less. I am able to text Hope and Christina when I need to vent or have questions. Unfortunately, this is neither of their children's first time at St. Jude. Both have recurring tumors and are currently undergoing RT and then Chemo. I'm telling you. Cancer sucks!
It is really hard not to get bogged down in the stories you hear. Women like to talk. We talk to vent our frustrations and find comfort in conversation. I'm really having to distance myself from too many people who want to talk. The friends I've met seem to get that. Others don't. Today I met a mother who's 2 year old has been through the ringer and quite honestly has basically no chance of living. I can't help but be burdened for this mother, but the reality is that I have too much of my own burden to carry. I am praying that God would open my heart to others and take away some of the anxiety I feel on a daily basis. I know I am not being the Christian He calls me to be, but right now I just don't have it in me. My prayers are selfishly going up for my child right now. Sorry. That just the way it is. I do say sweet breath prayers everytime I can for these mothers I have met, but I would be lying if I said I have gone to His throne on a daily basis for them. I'm working on it. I'm just not there yet.
I wake up daily and pray that my eyes would remain focused on God and that my mind and heart would be focused on Lucy. She deserves and demands everything I have right now. She is going to beat this thing, I just hope we have something left in our tanks when she is done.
3rd RT completed today. They started on her spine. We have about 2-3 weeks until her hair starts to fall out. I've begun talking with Ella about this, but honestly have no clue what to tell Lucy. I'd love suggestions for anyone who's been in this position. My gut feeling is that she is not going to give a flip about it. She probably won't want to wear a hat or anything. I have a few that people have sent just in case! I am also going to try to get her to wear those stretchy headbands with bows. She is so used to wearing hairbows everyday anyway I am hoping this might seem normal for her. Either way, she is going to be the most beautiful bald-headed 5 year old anyone has ever seen. Cancer might get her hair but it won't get the sparkle from her gorgeous blue eyes!
Dear Lord, thank you for the sunshine today. Thank you for allowing Lucy to do well with the doctors and nurses. Thank you for Ella and Jack. Thank you for my dearest friends and 2 sets of grandparents who love us dearly. Thank you for loving me despite my bad attitude and thank you, in advance, for healing my daughter.
2 prayer requests:
1. My dear friend Sarah's father passed away this morning. I know this has to be so hard on them and I just wish I knew the words to say. I love you, Sarah and family.
2. My sweet grandfather underwent some major bladder surgery associated with cancer the day before Lucy was diagnosed. He acquired MRSA while in the hospital and is having some set backs. He is scheduled to go to his Oncologist tomorrow to determine how his cancer will be treated. But just like Lucy, they have got to get him well and keep him well before they will treat it. I have not seen my grandparents since Lucy was admitted into the hospital on Feb. 23. The night before I went to visit them right afer surgery and saw them for only 10 minutes in the ICU. I miss them terribly, but they have both been too sick to be arond Lucy (my grandmother caught MRSA from my grandfather.) Please pray that his cancer will be easily treated and that God will continue to bless his life.