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.

The Next Challenge

We met with our neuro-oncologist today. She was very encouraged by Xavian's recovery from the surgery. Xavian's tumor is malignant and has been diagnosed as a PNET or primitive neuroectodermal tumor. I won't go into exactly what that is, I just know that it has something to do with primitive nerve cells in the brain and is somewhat rare.

Our neuro-oncologist has a chemotherapy protocol that they've used previously to treat this type of cancer. Due to the rate at which this tumor replicates, we'll have to start chemotherapy almost immediately, so Xavian will be starting chemotherapy early next week.

Right now, we're looking at 2 to 3 cycles of chemotherapy. Each cycle will last about a month and we'll spend 6 to 10 days in the hospital for each cycle. Our neuro-oncologist gave us a 40 to 50% chance of this treatment killing the cancer. There is about 20% of the tumor remaining that will continue to grow if not killed.

God will get us through this. Although faith is a struggle and wouldn't be faith without the struggle, and this is the scariest thing we've ever dealt with, I think I can speak for Cassie when I say we have peace and know that God is good and we are loved and protected. Something great WILL come out of this. I believe that with every ounce of my being and I look forward to seeing what that great thing is.

Keep the prayers coming!!

Lots of Emotions

It's been a long, slow weekend. Xavian is eating well and sleeping well, but he gets really irritable in the early evening until around 8:30ish each night. We're not sure why. He does seem to have a lot of gas, but it could just be Xavian being Xavian. His head is healing nicely from the surgery. He's got a big horseshoe of sutures on the right side. It doesn't really seem to bother him at all, just as the neuro-surgeon said it wouldn't. He's got one more dose of Decadron(used to decrease swelling) and he'll be finished with it.

On Monday at 1pm, we should find out the results of Xavian's brain tumor tests. We hope and pray for the best for our sweet baby. We've been blessed with two wonderful gifts from God and we hope that they both will have the wonderful lives that we have been blessed to have. Cassie and I both have many emotions and feelings at this point. A few that I'm struggling with include fear (on many counts), worry, doubt, anxiety, sadness, mental fatigue, emotional fatigue, and physical fatigue. Although I want to focus on the positive emotions and feelings, the negative ones are trying to break into my heart. I feel like things in the big picture will be okay, but the day to day grind is what worries me the most. So many questions creep into my mind. Questions like:

• How much pain will my son have to go through?
• What if this affects him negatively long-term?
  
• What if they tell us he won't make it?
• What if something happens to my oldest son as well?
• Is it safe for us to have more children?
  
• How will my wife and I cope emotionally?
• Why us?
  
• Was there something I could have done to prevent this?
• We just bought a home, how can I continue to support my family if this hits us hard financially?

I'm sure these types of questions are natural for this type of thing, but it doesn't keep them out of my mind. You may wonder why I'm mentally, emotionally, and physically tired. The reason is that these types of questions and emotions I've listed stay with me all day long. Getting out of the house with Dante a couple times this weekend helped a lot. We went to Target twice and stopped by Russ's house for a few minutes, which Dante thoroughly enjoyed by the way.

Say a prayer for us, that we will have strength and courage on Monday. Neither my wife or I are on any medications for help with this, rather we're relying fully and soley on the power of God to not only heal our son, but carry us through this as a united family.

Friday the 13th

"Xavian is still making progress. The nurse practitioner who works for our neuro-oncologist called today and we have an appointment Monday to see what type of cancer we're dealing with and what's next. I pray that it's not bad and it's easily treatable. That is my hope and my prayer. They will also take a good look at Xavian and see where he is with his recovery. Please say a special prayer this weekend for our sweet little man." As said by Matt on facebook

I am very anxious about our meeting with the neuro-oncologist Monday. I pray that we have nothing but good news from her. Xavian has gone all day without any Tylenol and did great. I am looking forward to Monday being his last dose of decadron (steroid). It seems to make him fussy and he doesn't like to take it. He only got up at 4am to eat then slept again until 8am. Overall he is doing better than I expected. I'm not really sure what I expected. Thanks for the contiuned prayers. We couldn't ask for better friends or family.

On a side note; I have the best husband! Matt wrote the poem "I Kneel" on the right hand side of our blog. I am so proud to call him my husband and best friend. I wouldn't want to stand next to anyone, besides him, during this trial.

Back in Time

I know many of you are wondering how this all started. Well, let me share. A week ago today (Thursday, Feb. 5) Xavian was his normal 2 months self. Until, late afternoon he woke up screaming. Most people were saying well, he's just fussy. Any mother knows what I am talking about when I say you know when your child is in pain. He was screaming like that. I tried to feed him and calm him down. Nothing really seemed to work. Xavian would scream for 5 or 10 minutes and fall asleep. Then about 15 minutes later he would wake screaming again. He wouldn't eat after his 3 o'clock feeding. Finally, at 8pm we decided something was seriously wrong and needed to take him to the ER. My aunt came and sat with Dante as he slept while we headed to Children's Hospital in Birmingham, AL. We got there and barely had the paper work filled out when they got Xavian back to a room. I was thinking maybe he had an ear infection. The resident looked him over and told us that he could tell something was wrong but didn't know what that was. He went and got his attending and she came in to look as well. It didn't take her long to know something was wrong too.

By this time he was already dehydrated and they were getting fluids in him. At the same time they put in a catheter, drew blood and more blood, and a spinal tap was done. He had wires hooked up and tubes everywhere. All the preliminary test came back negative but said they needed to keep him for at least 2 days to make sure the labs they send off came back negative. We were finally up to Special Care Unit around 3 am. Visiting hours were over at 6 am so Matt and I decided to come home and sleep for a few hours and head back up there. At 7:30am my phone rang and it was the resident Dr. in the ER calling to let me know we needed to head back up-they had moved Xavian to PICU because he had stopped breathing. Praise God that a Dr. just happened to be standing at Xavian's bedside when he stopped breathing!

Matt and I rushed around the house to get it together and headed back to Children's. It was rush hour at that time so it took us nearly 45 minutes to get there. While we were on our way Xavian was having a CT done. Once we got there he had just gotten back up to PICU. Before we could even go back to see him the Dr.s wanted to talk with Matt and I. The surgeon said the CT had shown a VERY LARGE mass on the right side of Xavian's brain. He was going to order another CT (with contrast) and an MRI to see if it was a tumor. I am so thankful for the social worker that was in the room with us (Peggy). I don't wish this kind of news on any parent.

Right after the CT the surgeon came back out and let us know that Xavian was being preped for surgery. They only had time for the CT because it showed there was a LARGE tumor creating great pressure on his brain. The tumor was causing the bleeding (which is why he stopped breathing). They needed to remove it ASAP. He then began to tell us that Xavian could bleed out during surgery if the tumor was bloody. After that, I'm not sure what else he said. Upon receiving all that information and having a migraine I couldn't take any more. He did say the surgery could take 4 hours. Only 2 1/2 hours later the surgeon came back and said that they removed most of the tumor and it wasn't as bloody as they thought. Thank God! And, thank you to all that prayed for Xavian during that time. Thanks to Kym Mitchell that made all those phone calls for us.

We are now just waiting for the pathology results to see what lies ahead for our family.

Home Life

So, Xavian is at home. He is continuing to make good progress. We cut back on his steroid medication as directed by the surgeon. We'll steadily decrease the dosage until he's not taking it anymore. He's also taking anti-seizure medication, but I'm not sure how long he'll need that.

We're still waiting to get the results back from the test on the tumor. We really don't know what to expect at this point. Everything has been a surprise and we're just anxious to know what the next challenge is.

Xavian is eating well, although he's not interested in the bottle, just mom. He slept very well last night, only getting up once to eat. He is still very irritable and still seems sensitive to bright light and certain sounds. He's been very clingy to his mommy. On a positive note, he smiled at me a lot today and that made my heart feel good. I spent most of the day with Dante. We went to Target to get a toy while Cassie, Denise (Cassie's mom), and Charity (Cassie's sister) stayed home and comforted Xavian. My parents went back to Jackson this morning and Cassie's brother and father went back to Kentucky this afternoon.

Like I said though, we really just don't know what to expect and that's tough. I'm mentally, emotionally, and physically drained at this point and I'm pretty sure Cassie is too. This is already by far the toughest thing we've ever dealt with in our lives, but we're hanging in there. When you're in the position we're in, you realize that life doesn't stop because you are dealing with something difficult, instead you have no choice but to bear down, accept what you are facing, be thankful for all the wonderful things you have, and continue to live a happy life... and if you truly believe in what we believe in, you understand that this life isn't just about you anyway.

A Smile at Bedtime

It's late Tuesday evening. Today was a good day, all things considered. I held Xavian for three or four hours on my chest. He and I both fell asleep. Both of our mouths opened, catching flies. Cassie was laughing at us I'm sure, but she was laughing and that brings a smile to my face.

We had a few visitors today. It's so refreshing to constantly see those concerned faces walk through that door. They aren't here because it's fun for them. They aren't here because it's going to make them money. They are here with concern for another's well-being and Cassie and I will never forget that. Isn't that what God is all about? Lifting others. Loving others. Caring for others. The unselfishness that I've witnessed over the past week has given me a new perspective on life and I don't ever want to forget this humbling feeling.

Xavian continues to recover from his surgery. He's a bit irritable due to the brusing from the needle pokes and the nature of the surgery. It's interesting how the brain reacts to such a surgery. Seizures, irritability, etc. Xavian had a couple small seizures in PICU, but nothing that the staff was concerned about or didn't expect. He's eating more than he did before he got sick Thursday, or at least it seems. We know that this recovery is just one challenge and the chemotherapy that likely awaits us will be yet another challenge, but prayer has brought my son through surgery and prayer will bring him through chemotherapy if that is the route we have to take and if that is God's Will.

Xavian is resting comfortably in his bed at the moment. His mom is resting comfortably next to me. Dante is resting comfortably in his crib at our home. This brings me peace because my family is safe and resting. This brings a smile to my face.

Thank You

Cassie and I are going to use this new Hallway blog site as a place to share our feelings with all of our friends and loved ones. We'll continue to use Facebook for updates as well.

The past 5 days are a blur. Our world has been hit with a meteor and without the love of our friends and the power of God, we would have been consumed. Pain is part of human life, but that fact somehow never seems to help when we are in pain. I often foolishly try to live my life by avoiding pain, but that's not what God expects us to do. Instead, He wants us to embrace the pain that comes our way by leaning on Him and allowing Him to be glorified through the strength that He gives us. Still, the pain is not easy and our human nature drives us to push it away. It's part of life. It's the constant work that God is doing in us that molds us more into his form.

We've had friends visit us, care for us, encourage us, prepare us, be honest with us, take care of our children, pray for us, and most of all love us. It's hard right now to reach back out to each one of you who are in that list, but we will eventually when we are past the challenges that we're squaring off against at this very moment.

So, all that to say, "Thank You!" As I said in one of my Facebook posts, I can never express in writing how much it means to see just a few words of encouragement!