A Long Day

I don't even know where to begin...

I probably should be sleeping right now but, as soon as I fall asleep something else will happen. I got to the hospital at nine to relieve Matt so he could go to work. In the process of switching out Xavian pooped all over the place, then peed on the shirt we changed him into, all the while transport was waiting to take us down to Xray.

It was a quick trip down there an back. Thank goodness. The doctors put an order in for the xray because Xavian's methotrexate levels still had not gone down - after increasing the Leucovorine (rescue drug) and iv fluids. They were checking to make sure he didn't have any fluid build up in his chest - causing the methotrexate to sit there. Results - no fluid.

Once we returned to the room they came and gave him another dose of the Leucovorine. After 30 minutes they came back for labs to check the MTX levels again. I was saying some prayers so that we could move on to the next drugs. Results - levels went back up. It's so frustrating! He had been so happy and more active the past few days. How could he not clear the MTX with all the peeing he'd been doing?!

At the end of the day (five for most people) our wonderful nurse practitioner came in to let me know she had spent three hours reading and researching MTX and how it's excreted from the body and what our next step would be. She was perplexed as to why his levels would go back up. She asked if I was taking any suplements that could be passed along through the breastmilk. Nothing. Not even the prenatal vitamins I should take while breastfeeding. His levels aren't dangerously high but it's at the tail end where they should be back to normal by now. She wasn't too concerened with that. What she was concerned about (and I quickly became concerned too) was the delay this would put on Xavian's treatment. I was also concerened with the mouth sores. Would their onset be quicker than the first round? Would they be more severe? She could almost be certain he would be getting them again; if not sooner. They were pretty severe last time. She couldn't emagine anything worse than that. If the levels aren't back down by the time he gets sores we would have to wait to start the other drugs. This could take a week (as it did last time). Because of that, we would have to start round two all over again. You see, for this treatment to work he has to get the drugs within a certain time frame. They can't give the cells a chance to start dividing again. Again, it's all very frustrating because Xavian will have to go through all that pain one too many times.

The nurse practitioner went over all the options with me. One, she had read an article on, is to give Cholestyramine. It's used to lower cholesterol but she found this article and talked to some other nurse practioners that had used it to bind with the MTX and pass through the body. Sounds good to me. Better than the option of using charcoal.

So, Xavian has gotten a dose of Cholestyramine and an increased dose of Leucovorine. He will get more blood drawn at midnight to check the MTX level and then again in the morning (eight). Please pray the level will be where it needs to be (.1) and we can move to the other drugs before he gets mouth sores. Sorry for the long post, it was a long day...

Question...Why do the nurses wait until 11pm to get boisterous?

Sunday 3/29 update

I went to sleep the other night before I could update with the results of Xavian's xray. The surgeon came in and let us know that his line had not moved even though the stitches had come out. Under his skin is a cuff that helps the catheter stay in place in the event that the stitches come out. This is pretty normal. There is a kink in the line but since the nurses have been able to push meds and get good blood return we will continue to move forward.

Today Xavian got a blood transfusion. A CBC wasn't ordered so I'm not sure what his counts are right now. The nurse said there should be one tomorrow though. As of this morning he still has not cleared the Methotrexate. It is at .3 and needs to be .1 before he can continue with the other chemo meds. Praying for progress tomorrow.

He has not thrown up in two days. He isn't acting like he feels bad either. I think having the feeding tube in the back of his throat has made his gag reflex a little stronger.

Matt and Dante went to church this morning while my mom, cousin Sarah and I hung out with Xavian. He is napping now so I think I will too.

Round 2...

...has begun. We spent most of Wednesday morning and afternoon in clinic waiting to be admitted to start Xavian's second round of chemo. Once we got to our room (446 in Children's Hospital of Birmingham) he was hooked up to the normal fluids he continues to get in preparation for the chemo drugs. We also found out, a month from now, when we come back for his third round they will do another MRI to see how the tumor is responding to the chemo drugs. I am personally praying for a complete healing, no trace of cancer!

Thursday morning he was given Methotrexate (the one that causes mouth sores). This, like last time, was given over a four hour period. He was then given a rescue drug to clear it out. It will take a couple days to get out of his system. The doctors are hoping Sunday his levels will be down and can start the final drugs. This will also be when they expect to do a blood transfusion. He could use one now but they don't want to mess up clearing the Methotrexate out of his kidneys. He was also given Vincristine - another drug used to stop the cancer cells from reproducing. They also decided to go ahead and put a feeding tube in before he gets mouth sores. He didn't like that so much, but has gotten use to it now. They fed him through it at night and he did great. It also gave me a chance to go home and sleep. My mom stayed at the hospital with Xavian. Matt, Dante and I were all under one roof for the night.

Today (Friday) Xavian had his hearing test. He passed, while sleeping the entire time. He has been the happy baby he was before all this started and that makes me smile. Although he is eating well he has been throwing up after each feeding. We'll have to wait and see what the doctors say tomorrow morning. More than likely if he continues to get sick they will feed him through his tube. Also, while I was changing the dressing around his central line I noticed the stitches had come out. The stitches are there to keep the catheter from pulling out. I called the nurse in to show her. She then paged the doctor to let him know. We had to stop all the fluids until they could do an xray and make sure his line hadn't been pulled out. We are still waiting to hear back on the xray so that know if we can continue his fluids or will need to do something to put the line back. I will be sure post an update as soon as I hear something.

Both Xavian and Matt are sound asleep. I think I should join them both. I will try to be better about updating now that we are back in the hospital.

At Home

Just a quick note on Xavian. He's at home doing very well. He seems happy and is sleeping well. We're still tired. I don't imagine that will go away any time soon.

We will go the clinic Monday to see if Xavian's white blood cell counts are high enough so that we can stop giving him Leukine shots. Once he is off Leukine for 24 to 48 hours, he can be admitted to the hospital to start his next round of chemotherapy. So, what this means is that we'll more than likely be admitted Wednesday, March 25th, for Round 2.

Thanks for all of your thoughts and prayers. Please keep them coming.

Headache Anyone?

The weekend was brutal. We had a very fussy boy. Daddy was here most of the time while Mommy spent quality time with Dante. Late Sunday afternoon, Cassie relieved me until this afternoon. It went down hill from there, for Cassie at least. She had already started getting a headache earlier in the day, so she was already worried. For those of you who don't know, Cassie suffers from frequent migraine headaches. Well, later Sunday evening she got a bad one. She began vomiting and became very weak. I was at home with Dante feeling very helpless. I started calling friends to help. Ultimately, I was able to get Kym on the phone and she basically dropped what she was doing and came to Xavian's room. When she arrived, Cassie was in the bathroom vomiting and Xavian was being attended to by two nurses. He was also vomiting. I felt guilty for not being here and as I've had to do many times over the past two months, I was forced to put my pride aside and let someone help us. Kym was up most of the night with Xavian and according to Cassie slept in a rocking chair for a little while.

Today has been an easier day. Xavian did very well for Cassie today. He nursed regularly. His nutrition IV, for lack of a technical term, has been reduced considerably. His white blood cell counts are steadily on the rise, namely his Neutrophils, which are the ones that fight infection. Cassie said that he was playful today and smiling. What a blessing!!!!! The doctor said that we might get to go home this week, which would be an absolute blessing at this point, because three weeks straight in a hospital room (not counting the one day at home) is starting to wear on our family. My mom will be here this week to help out, so that will be provide a few much needed breaks. Hopefully, it will allow us to get a little bit of rest. I've had a headache for four straight days now, but I'm hoping that will go away soon.

Please pray that if it's in God's Will, that we go home this week. I don't want anything to happen that's not in God's Will, but I promise not to complain a bit if His Will involves us going home ;-)

White Counts on the Rise

Xavian has been sleeping a lot the past few days and has vomited a few times as well. He's very congested and has had several throat suctions performed. The mucus has been extremely thick, so I can understand his discomfort. He's also had some massive blowouts in his diaper, which I'm sure hurt at various phases of the blowout process. They've reduced his IV nutrition to see if he will eat more from the bottle, but so far he hasn't. He will probably eat more from the bottle once this mucus clears up and he can breathe more easily. Benadryl seems to be the drug that helps him relax the most. Usually it knocks him out. Morphine takes away the pain, but seems to make him itch really bad, which makes him seem uncomfortable

This morning his white blood cell counts were up a little bit, so that encouraged the doctors and us. We are hoping to see a steep climb here shortly. We really want to go home. It's stressful trying to juggle this stuff. There is truly no rest for the weary.

Dante got home last night and played with me for a few minutes before going to bed. He woke up a few times in the middle of the night. I don't think he knew where he was. He's been very cranky since returning from Atlanta. I think all the bouncing around might be catching up to him. He's spending most of the weekend with Cassie while I stay at the hospital with Xavian.

At this point, we continue to wait and see what tomorrow holds. We're truly in a "one day at a time" pattern.

General prayer needs:

• continuing faith, strength, patience, and courage
• leaning on others for support
• rest for the weary

Specific prayer needs:

• that we can be patient in the midst of stressful moments during each day
  
• that Xavian's white blood cell counts get back to a safe level soon
  
• that we can go home and have some semblance of a normal life for a few weeks
• that mom and dad can take care of ourselves while trying to take care of a sick infant and a toddler
• that we can learn from this experience
• God's Will
  

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.