Change is a 'coming

I have been feeling in my spirit for a while now that there is a shift coming for me and my family. Not quite sure what it is, but I know it's going to be good. Perhaps something that has been withheld from us is finally on it's way. Maybe a shift in ministry, maybe financial or material, maybe a new enlightment or spiritual gift. I'm personally fine with any of that. I know there are callings on my life that have not yet been realized. So whichever way it goes, I'm ready for a change ..

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Saturday March 13

Lailah gets discharged today! We get to go out on the town and see the sights of Memphis. It should be a nice diversion from everything we've been experiencing. She slept through the night last night, MeMaw had to wake her up to feed her. All her vitals are great, you wouldn't think there was anything wrong with her by how she looks. She is making lots of new friends along the hall, especially one little feller who came by last night riding on his IV pole. That's a fairly common sport, and rather adorable. MeMaw and PawPaw stayed with her last night so Mommy and Daddy could get caught up on their rest, which was really nice. We should have the Bug with us when we lay down tonight. We brought her Moses bed so she will be all comfy and cozy. Tomorrow we will learn how to care for the port that was installed yesterday. It has to be cleaned and flushed daily to keep it sterile. Next thing up treatment - wise is Monday. She will have a test to determine her exact kidney and liver function, because the amount of chemo she gets is calculated by her ability to process it. Too much too soon could do a lot of damage to her immune system, so its pretty important to have exact amounts. Tuesday she will have a hearing test to get a baseline number on her hearing. That will be necessary to make sure her hearing doesn't get damaged as a result of the chemo. It's a lot to remember, but we are managing. I will be returning to Mobile Wednesday afternoon. My Mom is coming up Monday to bring our car and we will drive hers back to MobTown. I have got to get back to work, and I will also get to help plan her fundraiser concert and dinner, car wash and a few other things that some wonderful people have got the ball rolling on. If you are in the Mobile area, stayed tuned for the concert details, it should be really great. Gotta run, we are about to get her discharge papers and go find some lunch. Keep on praying that everything goes well for us. God bless you.

Friday March 12

Lailah just got out of surgery. Today she had a MRI and a port installed for the chemo and other meds. No more IV's and no more gas to knock her out! Yay! She did perfectly fine through everything today and woke up mad, hungry, and ready for lunch. Heather's sister, aunt, mom, and dad made it in yesterday. It's great to have them here to help out with the Bug. Heather and I got out of the hospital grounds last night for the first time since our arrival 4 days ago. Mommy and Daddy got to go on a hot date to Wal-Mart! Since Heather is staying in Memphis near the hospital, we had to get all her toiletries and some grub for the room. We are at the Grizzly house now, but will be moved to the Target or Ronald McDonald house Monday. Grizzly house is for short term, 7 days, and is set up more like a hotel. RMH or Target House is setup for longer stays, more like an apartment. If all goes well with her first hit of chemo Monday I hope to return to Mobile Wednesday and get back to work Thursday. I want to work through the next week and get caught up on everything that is undoubtedly lagging behind, being as I am the only one in the store that does what I do. I must say that Lowe's has been terrific in supporting us, both personally and professionally. A few key people have stepped up to the plate in a HUGE way, to whom I will be eternally grateful. Lots of fundraising ideas are coming to life as we speak, and much effort is going into the planning of those events. Anything raised will be greatly appreciated. A separate account has been established at Wachovia Bank and every dime will be spent on Lailah's care or given back to St. Jude's. I have always heard about the good work done here and provided at no charge, but the scale and scope of what all they do and offer must be experienced to be believed. Everyone we have met here has been great, and I encourage you to support them whenever the chance occurs. Thanks again for all the prayers, God is hearing you and is giving us supernatural peace in the midst of this storm.

Thursday March 11

Today has been a much better day. Bug was scheduled for an MRI and chemo port today, which would put her under anesthesia for over an hour. The head doctor of anesthesiology made the decision to give her a break today since she was under for over an hour yesterday. He postponed everything until tomorrow. So today she gets to be just a baby. No IV's no monitors, no wires. She is dressed in her own clothes, got a bath and all that good stuff. She is the talk of the floor! Last night while Momma was getting a shower over at the Grizzly house, the nurses passed her around to the whole staff. Everybody wanted a turn to hold the Bug. We found out today that she is the youngest ever patient here that has her diagnosis, and one of the youngest ever anywhere. So as early detection goes, this is about as good as it gets. Had a great chat with one of the Chaplains today. It was nice to just talk about common things like school and church, music, etc. We are working diligently to keep life as normal as is possible, and the staff and environment here are greatly assisting that. Keep on praying and believing with us.
Debo

Today...

First full day at St. Jude's is winding down. Been quite a busy day, lots of people to meet and talk to. We must have met half the staff over the last 20 hours or so. Everyone here has a wonderfully positive outlook and that is helping a lot. There's a small chapel near the cafe and I went in to explore it today. I like the quiet, reverent feeling the room has to offer, a little 'sanctuary' if you will. Me and God had a little talk today. I told Him that even though she hasn't had a chance to be dedicated yet, all the things that would be said still apply. She's not mine so much as she is God's and as such, I trust Him, even when I don't understand why all this had to happen. It's easy to discuss faith and 'putting it all in God's hands' but the simple truth is that it's not so simple. I'm feeling really overwhelmed with all this and trying to process as well as possible, but there's not a lot Daddy can do for his little girl right now. And that is killing me.

Yesterday.

What a tornado of a day yesterday was. It started just like any other, getting up just after 4 a.m. to head to work. The exception being that I would break early to take my baby to the eye doctor. After a couple of hours waiting, he confirmed what we didn't want to hear. My baby has the same cancer I had as a child. The doctor recommended a few treatment centers, one of which is St. Jude's in Memphis TN. He also recommended we get there as soon as possible, even checking on a Life Flight jet. But the jet would only seat one parent, if available. As it was, there was not a jet available, so he told us to go home and pack our bags and drive to Memphis. Quite a different end to the day than I had hoped for. I will never forget packing my clothes into a duffel bag and wondering to myself how this was going to work. I knew for a fact I had less than $50 to my name before my next paycheck deposits, and that was still 3 days away. I was packing for a 7 hour trip and couldn't pay for half the distance. Amazingly, thanks to some quick phone calls to and from family members, less than an hour later I was holding well over $300 with a few more offers ready to send at a moment's notice. So, we take off to Memphis, arriving around 11:00 p.m. By the time the registration and initial check-over were completed, and 3 trips up and down stairs to unload what seemed like half our worldly possessions, we got to sleep around 1:30 this morning. I woke up around 5 to Lailah screaming bloody murder as they were putting the IV into her foot.
First thing this morning was a EUA, evaluation under anesthesiology, which revealed the biggest cause of concern was the location, not the size, of the tumors. The problem is how close to the center of sight the tumors are located. The location precludes laser as the most effective treatment, because the laser poses as much harm to the optic nerve at this point as it does to the tumor. That being said, the next best option would have been open radiation, similar to part of my treatment 25 years ago. The problem with radiation being her age. At only 3 weeks they are hesitant to use open radiation, usually preferring over 3 months of age before beginning that treatment. Thus leaving us with a 'light' chemotherapy treatment as our best option. The hope is to shrink the tumor far enough away from the optic nerve center to make a laser treatment more feasible. There will also be a MRI tomorrow because of a minute chance of an associated tumor on the brain that is VERY rare, but still possible. That's all the negative we have at the moment, now on to what has been positive: Within 24 hours of discovery, a network of literally thousands of people are praying across the country. As I mentioned earlier, the financial support to get us up here was significant and almost immediate. St. Jude's has welcomed us with open arms into what is a most amazing and friendly, positive atmosphere. Everything we could possibly need has been provided for, as well as amenities and benefits you would associate more with an exclusive resort than a health care facility, including a Starbucks! Today we will check into the Grizzly house, which is operated by the Memphis Grizzlies basketball team. (Similar to the Ronald McDonald house my family stayed in while I was in NYC.) There I hope to find a real bed that my dainty frame can fit in without danger of my feet cramping permanently. Maybe a coffee maker too. My love for Starbucks is tempered with the fact that my addiction could easily top $15 a day left to it's own devices. So, I digress to the far less fascinating Standard Coffee Pot. What we are working with now is settling into a bit of a routine of treatment and salvaging as much 'normal' as possible. I will keep posting more details as they are revealed to us. Everything else we know at the moment are what-ifs and maybes, and I would rather share what I know as fact. So keep us in your prayers, we will keep you updated through this blog, and posts on Facebook. God Bless you all for your concern, and we greatly appreciate it.