Jack Bauer

Xavian is doing ok. His white cell counts are still down and he had to get red blood and platelet transfusions today, but he has seemed much more energetic over the past few days and continues to look better. He only ate once today, but we think the reason for that is two fold: First, his white cell counts are still down, so he's missing his homeland defense, which weakens his entire system; Second, he is still being fed through IV, so his body may not be asking for too much "real food". It's all just parental speculation though.

We'd really like for his white cell counts to get back to normal so that we can go home and rest for a few weeks before coming back for alrededor de dos, that's "Round 2" for those who don't speak Spanish. Troy and Victoria know what we're talking about for sure! We just need a break, especially Cassie who is up here most of the day everyday while I'm at work (i.e. my therapy).

Thanks for all the cards, emails, facebook posts, gifts and encouragement, but most of all for your thoughts and prayers. Old friends, new friends, family, complete strangers and work family, thanks for showing concern and caring. Kym, thanks for letting Cassie and I have some time to ourselves. Without you, they would have already locked us both up once, and then again after we escaped! If we were all as strong as Jack Bauer maybe we wouldn't need help, but only Chuck Norris is that strong, speaking in terms of humans of course ;-)

Acts 20:34-36 - In our weakened state, it's great to know that so many brothers and sisters are willing to help us. I pray for blessings to be poured out onto all those who have put in the hard work.

Milking cow

I don't want to speak too soon but, I may not have to be a milking cow for too much longer. Xavian actually ate this morning when I got to the hospital. This means, for me, I won't have to pump anymore. Yay! This means, for our family, we may get to go home sooner than later. Yay! Thanks for the continued prayers.

Baby Smile

Xavian has seemed to be in a better move the past few days. He actually smiled a few times yesterday and today. His white blood cell counts are still very low and he continues to receive a few platelet infusions as well as the white blood cell booster injection (I can't think of drug names right now, sorry). He also continues to have lots of gas, which makes him a bit fussy. Last night he had a few BMs for the first time in a while. It had to have made him feel better. He hasn't had fever much, which is a very good thing. Since he can't swallow and he's had congestion, mucus builds up in his throat, making him very uncomfortable at times, so they've started doing throat suctions on him every day or two. It seems to have helped a lot. We're also keeping him propped up on a boppy pillow. He drools a lot, so we have to suction his mouth many times a day, sometimes we just stand there with the suction device, generally when he is thinking about a 10 ounce sirloin steak. The part about the steak was a joke. He still hasn't eaten lately.

So when can we go home? We can go home when his white blood cell counts go up, when he isn't running fever, and when he's eating.

Mom and Dad are tired. We are taking turns staying at the hospital. It's difficult to try to figure out who is going to stay where. It's nice to sleep in your own bed, but you feel guilty not being with your spouse and child. Dante is in Atlanta until Friday staying with my sister and her family. We can't wait to see him. It took me about 10 minutes before I was missing him.

General prayer needs:
- Strength, courage, patience, faith for all of us
- Positive thinking

Specific prayer needs:
- Xavian's white blood cell counts go back up and he starts eating again
- We can all be at home enjoying our new home (that we worked so hard for) as a family

The waiting game

I thought maybe Xavian's counts had gone back up because yesterday afternoon he seemed to be doing better. His sores didn't look to bad and he didn't seem to need morphine as often. This morning when the doctors came by they informed me his counts were still the same (extremely low). So, he got more platelets. That procedure took all of 20 minutes and he slept the entire time. He hasn't had fever in 2 days so that's good. He will continue to get two different antibiotics though.

He still is getting nutrition through his central line because he isn't eating. I have tried to feed him on several occasions but he just spits it back out. I am guessing the sores are still in his throat because he won't swallow anything. All medicines are now given through his central line. Not swallowing is also causing a lot of congestion. We have had respiratory come up and deep suction to remove all the mucus. This seems to help him rest more peacefully.

Ideally, they like to start the next treatment four weeks from the start of our last treatment. This would be March 30th. We can not continue until his counts come back up, he starts eating and no longer has fever. All the preceding has to occur before we can go home too.

We spent two nights in our new house as a family before coming back to the hospital. I pray that we can spend a few more before we start the chemo again. Until then, we will be waiting...

Quick update before sleep

Xavian is trying to get some sleep now but seems to be very restless. The doctors just came in and let me know that he will be getting another blood transfusion today. His red counts were down but his white counts have gone up from the platelets he received yesterday.

He still has sores in his mouth that go all the way down to his bottom. Because of this he is still not eating and will start on iv nutrition today. That should start around six. The nurse explained to me that the sores feel like a really bad sunburn. Ouch! The doctors must have realized how much pain he was in when they saw him this morning so they put in orders to give him morphine. The nurse is putting it in iv now. I hope this helps him sleep. For those of you that may be worried about us giving him morphine it was explained to us that it's a very small dose and it's based on his weight. There is no chance that he can get addicted to it.

That's all the news we have for now. Thanks to my BFF Terri for helping us this week with Dante. She has had two crazzies (Dante and Ellory) to look after. Matt and I really do appreciate it! I'm sure Dante does too. He loves to antagonize Ellory. Just like a big brother.

Go Home, No Wait, Come Back

I haven't updated in a few days because we've been super busy. Soon you will know how busy...

Monday morning the nurses told us we would be discharged, so we were thinking we would be home by 1pm. We were sadly mistaken. The discharge process, a long, tiresome ordeal, landed us at home around 8pm. One reason the discharge process took so long was that Xavian received a four hour blood transfusion to boost his red blood cells at 2pm. Once we arrived home, we were extremely tired and went to bed not too long afterwards.

Xavian was awake whimpering most of the night Monday. We think he was nauseated. We know he was congested. We also know that he was very uncomfortable, but we gave him all the medications we knew to give.

Tuesday, Xavian seemed happy and comfortable during the day, but fussy again at night. Before bedtime we noticed a couple ulcer-like sores in his mouth. We expected this since Methotrexate is known to cause these types of sores in the mouth and throat. Xavian whimpered most of the night, but again, we had given him all the medications we could. The chemo medications were just breaking him down as we expected them to. Unfortunately, we hadn't seen the effects of chemotherapy on our son, so we didn't fully know what to expect.

This morning, Xavian's mouth sores had gotten much worse and he wouldn't eat. He hadn't eaten since 8:30pm the night before. He was extremely uncomfortable and fussy. We grew very concerned. We called the oncology nurse and made an appointment at Clinic 8 at Children's Hospital. At the clinic, the nurse drew blood from Xavian. He was dehydrated and immediately received fluids. He had a low grade fever, which is borderline dangerous for a chemo patient. He also immediately received several antibiotics since his white blood cell count was so low, as we expected it to be. The doctor came in and told us that he was admitting Xavian to the hospital again.

Xavian has been on fluids and antibiotics for most of the day. He ate once today, but doesn't want to swallow, more than likely due to his mouth and throat sores. We keep suctioning his drool since he's not swallowing much if at all. At the moment, he's stable, but since he's so young, he is being observed very closely. He seems to be quite uncomfortable and we're just hoping he's not in very much pain. The doctors said that he can go back home when his blood cell counts go back to a safe level, when he is not running fever any more, and when he is eating well, so we may be here for another week.

As a parent, it's very hard to watch your three month old suffer, but we know he won't remember this and we know that the reason he is suffering is because the chemotherapy is saving his life. A good approach to what we're dealing with is to turn negatives into positives and stay in the moment. We're not promised tomorrow and even though we should prepare for tomorrow, we can't live in tomorrow. We have to live in today. An approach I try to take to life is...

Learn from the Past,
Live in the Present,
Be mindful of the Future

New Web Domain

After much searching and consideration for a domain name with which our kids' friends can't make fun of our kids, we've arrived at a new domain name for our family. We decided to use the new .me extension as a representation of a personal domain. We thought about using .us, which would sound great for a "family" domain, yadayada.us, but .us stands for United States not "us", so we chose the more semantic .me for our family. Did any of that make sense? If you're not very "techy", probably not, but don't fret, in the next paragraph I will reveal our new domain.

Our new domain name is thehallway.me. It represents the Way of the Hall, which includes peace, love, and lots of things technical, but also has a nice PUN about a hallway, with which we could go in a few different directions. The .me extension gives our domain name a personal touch. Once we setup our email accounts, we'll have cassie, matt, dante, and xavian @thehallway.me in case anybody was wondering. This will allow us to monitor our childrens' email usage within the bounds of parenting, which includes keeping them out of trouble! Of course, once they figure out yahoo mail and google mail, our plan will have to be adjusted.

So, what happens to the matthalldesign.com domain name. I'll keep it and use it for business related work if I ever get around to doing more of that. For now, I'll make a useless, highly graphical splash page and park it. This will replace my current useless, highly graphical website for matthalldesign. I'll also make a useless, highly graphical website for thehallway.me.

In a few months, visit http://www.thehallway.me and see what is cooking in... The Hallway!

This hospital room is apparently starting to wear on me.