(the view from my new bedroom)
This means that today is our first day after Chemo/Stem Cell Transplant. The countdown to day 28 begins now. We wait, we watch, we PRAY our little hearts out for many things. Most importantly we pray that the Chemo is doing its job. All those little rogue cells that have infiltrated Lucy's body must die!! If only one cell survives, Lucy's cancer could come back/begin to spread. As I have mentioned before, Lu is receiving the highest dose of Chemo allowable for her age/size. Her body is being literally torn apart by this horrible medicine. But thankfully she was able to receive an Autologus transplant, so her body is not likely to reject the stem cells she received yesterday.
Next, we pray for no fevers. Any fever she gets while her counts are low and/or dropping will land her a 7-10 day hospital stay. She hates being in the hospital room and bed. And when you are a patient on the BMT floor you can't leave the floor. No cafeteria runs, no excursions to the gift shop. It's rather like semi-solitary confinement.
Lucy is experiencing a lot of discomfort after her first round of treatment. Nothing severe, but enough to make sleeping and resting difficult. Some weird leg pains (probably joint pain) and a super dry mouth. It's even hard for her to swallow her saliva. Did I mention that she still smells like creamed corn? Seriously, though, please pray that her leg pains will subside. Erik was "on call" last night and I don't think he got a wink of sleep. We left the hospital with an arsenal of meds, but I hate giving them to her because they all make her very drowsy.
(I expect this will be par for the course over the next few weeks)
Today is going to be a big day. Ella and Jack are coming down to the apartment and we are going to spend some much-needed family time together. Only 4 people can stay in the Target House at a time, so Ella is hopefully going to my sister's tonight and then come back over in the morning. As long as Lucy is doing well, I am going to try to have Jack with me as much as possible. He is just at such a formative age. He needs me and I need him. Ella's schedule is packed tight with swim team, horse camp, gymnastics camp and swimming and playing with her friends. She will be down here as much as possible, but I know she needs to maintain her life at home, too.
It's a balancing act. A very hard balancing act. Erik and I have discussed more than once how being close to home is a blessing and a curse all in one. First, let me say this. Any St. Jude (or other) mother (or father) that is reading this and has had to relocate from his/her family is probably screaming with disagreement right now. I understand that and I would never, ever want to seem unsympathetic to what they are going through. But for us, living close to the hospital has posed several different (not necessarily harder) challenges.
For our friends the Foleys, the Watkins, the Goods (and many more) they made a decision that leaving their homes and coming to Memphis was the best option for saving their child's life. They packed up their cars with all the comforts of home that would fit and moved to a "foreign" place for 6-12 months. Some leave home for even longer. (I met a family from Lebanon that has been here for so long that their children have learned fluent English and they have bought a house Downtown. They have no idea when they will get to go home.) Those families only see their loved ones a few times a month or less. My heart hurts for them in such a mighty way. But they know that when they leave and they accept it (to some degree I guess). Their focus becomes totally fixed on the sick child. Just the way it should be.
For us it is different. With my children at home and us being home during the first 12 weeks of treatment, it is hard not to fall into the role of mommy/daddy. If I can make sure that Lucy is in the most capable hands of her grandparents and make it to a swim meet then I am going to try. If I can provide Lucy with the best care while still trying to nurture and love Jack during his formative months, then I am going to try my best. Some days I have actually thought to myself how much "easier" it would be with Lucy as my only concern. But then my heart aches at the very thought of being away from my children. My arms literally hurt as I think about holding my precious children if even for 2 hours a day. I know moms that right at this very moment would hop on an airplane and fly for 12 hours if only to hold their babies for a minute.
My Jesus Calling devotional this morning reminded me that God desires our Thanksgiving. He yearns to hear our songs of praises. My favorite line from today reads "By the time you rise from your bed, I have already prepared the way before you. I eagerly await your first conscious thought."
So today I will sing praises of Thanksgiving, no matter what may come our way.
Dear Lord I am so eternally grateful for:
Erik, Lucy, Ella, Jack, St. Jude, Target House, a warm bed away from home, proximity to home, the promise of eternal life, Heaven, our extended families, the opportunity to have my children with me today, friends from home, friends we've met along the way, doctors, chemo, radiation, the promise of a future for Lucy, freedom, the Bible, our armed servicemen/women, medicine, this beautiful earth and so much more.