The Battle Wages On

Xavian is now taking an assortment of chemo and rescue/flush medications. He's on day two of Etoposide, day two of Cytoxin, and day two of Mesna. He's also taking Zantac for reflux and to calm his stomach, Mylicon to help with gas, and Keppra, his anti-seizure medication that he started three weeks ago in PICU. He's also taken Tylenol and Benadryl frequently. He's also had a fair amount of anti-nausea medication. Seems like a lot for such a little one doesn't it. I think so too.

The past few days have been challenging. Xavian has been quite fussy at times. He's gotten a rash on his stomach that they knocked out with Benadryl. He's had some pretty strong gas, which makes him quite angry. He's been congested for a few days and has spit up some clear, mucus type stuff, which makes him angry. He seems to have been quite nauseated at times and gets very frustrated when they try to take his blood pressure by placing a cuff on his leg, which makes him angry. He's been very fidgety at night, which makes mom and dad's nights very long. At times he doesn't even want to be held, he just wants to lie in his bed with his Crib Aquarium music going. When it stops playing, he immediately wakes and lets us know that it needs to be reset!

The hardest part right now is that we have to play the guessing game to figure out why he's grouchy and/or not sleeping. He can't tell us what's wrong, he's only three months old. It's challenging to transfer him to Cassie's lap to nurse because he's got a tube coming out of his chest with another tube from the IV pump attached to it. It's basically a two adult job at this point, which makes it extremely hard for us to post to Facebook and our blog, so our apologies for that. Cassie or I try to get away for a few hours at least once a day to stay sane. Right now it's very challenging for us. Hopefully we will be discharged Monday and can see if being home makes things a little easier. We're praying it will.

So, we are fighting this with all we have. Our family, friends, and strangers have helped in so many ways: Prayer, Planning, Moving our Home, Thoughts, Gifts, Cards, Support, Encouragement, and Personal Sacrifice. As the understatement of the year, we've been quite blessed.

Please continue to pray for us, that we can stay sane, get some rest, stay positive, and not feel guilty about being away from Dante.

Please continue to pray for Xavian, that he can endure all the discomfort or pain he's in, have courage, have strength, and be healed by the toxic chemotherapy medication that seeks ultimately to do more good than harm.

2 days behind

Yesterday (Feb. 24th) Xavian starting his chemo treatment. He received methotrexate over a 4 hour period. This drug stops the cells from making DNA. He then received an IV push of vincristine. This one prevents cell division.

Side effects of methotrexate are mouth sores. So far we haven't seen any. Side effects of vincristine (within two to three weeks) is hair loss. This won't be as bad as some other effects we may see; such as loss of appetite. He had been eating well up until late this afternoon. This may be because he's too sleepy.

Today (Feb. 25th) he was given what is called a "rescue drug" (Leucovorin), which is a normal part of this protocol. Leucovorin stops the effect of methotrexate on the bone marrow blood cells and the lining of the mouth, stomach and intestines. Once the methotrexate level is <0.1 micromolar he will start the other chemo drugs. When the level was checked yesterday after receiving methotrexate it was at 1085.34. Today, after receiving the "rescue drug" it was down to 19.96. Much improved. They will check his level tomorrow morning and will go from there.

Because of the toxic drugs, Xavian is susceptible to hearing loss. This morning he was given a hearing test. He passed in both ears. Even though there is fluid behind one of them. He will continue to be given hearing test each time we are admitted for chemo treatments.

Tomorrow is Matt's birthday. Don't tell him I told you. He's not too big on birthdays. So, make sure you wish him a happy one. Then, Friday my mom will come sit with Xavian while we close on our new home. Dante will be keeping my aunt on her toes. We will try to keep updating each day so that those praying will know how to pray more specifically.

Back at the hospital

Four o'clock came a little too early this morning. Xavian was Dr. Harmon's first case, so we were at Children's Hospital in Birmingham by 5:30am. Surgery came and went without a hitch. They placed a central line (CVC) on the right side of Xavian's chest. This is an external catheter that will be used to administer his chemo drugs and draw blood. It will require more care and attention on our part, but Xavian won't have to be stuck with a needle each time drugs are given (he's had enough of that over the past two weeks). We are currently in a room waiting for him to wake fully from the anesthesia, then he'll need to eat. He hasn't eaten since 2:45am when all he had was three ounces of clear Pedialyte.

The incision on Xavian's head continues to heal well. The doctors all seem to be impressed with his progress. We met with Dr. Reddy earlier and found out that the chemo treatments will begin tomorrow. We expect to be here for approximately a week before going home. While we are here, we will have to limit visitors since Xavian's immune system will be crippled and we're not sure what his response to the chemotherapy will be while it is being administered.

Thanks for all the prayers this morning. We'll post updates as the week progresses.

The Flu

Daddy(me, Matt) has the flu. I don't think it is very bad because I've had the flu before and have felt a millions time worse than I currentlydo. Doesn't matter though because I have to steer clear of my family as much as I can for today and the weekend and get better for Monday. I'm taking Tamiflu, so hopefully we can knock this thing out and I can help Cassie and Nana(Denise) take care of our little ones. Neither myself or anyone else can be around Xavian over the next few weeks while they are sick, especially if Xavian's blood cell counts (white in particular) and his immune system are down.

So, we'll have to get creative this weekend and come up with things for Daddy to do on his own. Shouldn't be hard to find independent tasks for a very independent person. I was going to miss the Supercross race in ATL, Georgia, but I may be banished to ATL this afternoon, so I may be going anyway. Our family(on Cassie's side) will be here packing boxes all weekend and the clutter would probably send my blood pressure through the roof, so getting away for a day may be a good move.

Round 2 Begins

Xavian remains strong. We had a checkup with our neuro-surgeon today. He said Xavian looks great. Xavian has been laughing and smiling and being a cute, fun baby all week. Dante and daddy have been sick, so we've kept our distance. I think Mommy is unbreakable (other than those migraines).

Anyway, Xavian will be admitted to Children's Hospital on Monday to have a central line put in and to start chemotherapy. Like I said before, due to the aggressive behavior of this cancer, we have to start chemotherapy immediately. We'll be in the hospital for at least a week, then we'll be in our new home and Xavian will be taking medications to fight the side effects of the chemotherapy medications. After that he'll rest. Soon after that we'll start another cycle of chemotherapy.

So, Monday we'll take a deep breathe, we'll say a special prayer and the next battle will begin. We're confident that our Prayer Warriors will be ready and we'll overcome this cancer.

In God we Trust!

Moving February 28th - Wanna Help?

To anyone interested. We'll be moving on February 28th from our apartment in Hoover to our new home in Trussville. At that time, Cassie, Xavian, and I will be in the hospital while Xavian does his chemo treatments, so we cannot even move our own home. We need help moving some boxes and then cleaning the apartment after the boxes are out.

Kym Mitchell will be coordinating the move for us. Two Men and a Truck will be moving the large, heavy items the following Monday.

If you are interested, please contact me at matt@matthalldesign.com and I will give you Kym's number.

Thanks so much!

Hair and Domain Names

I cut my hair today for the first time since Spring of 2007. Cassie and I both grew our hair for Locks of Love and guess what, her hair grew much faster. She cut her hair months ago. It's ironic that we are now fighting cancer, but when we started growing our hair for Locks of Love, we had no idea we would be in this battle. For me, it makes the whole Locks of Love experience that much more special and meaningful.

On a completely separate note... domain name renewal is coming up for us. Currently, we are using matthalldesign(.com), however I think it's time for a change, so we are tossing around different ideas for a domain name that we can use as a family. A few that come to mind are:
- thehalls (.com .net .me .us etc, just depends on what is available)
- imahall
- imahallbaby
- halllife

If you have a suggestion on a good name, let us know.