Resting

Xavian is at Children's Hospital resting in his room. It was an eventful day for him. Nurses freaked out as Cassie stayed cool, haha. Hopefully, we can come home from the hospital very soon and be together at home for two or three weeks before Round 3 begins.

We're all exhausted. When one of us is at the hospital and the other is at home, it's very challenging. I have an entirely new respect for single parents!! I also think that whatever bacteria or virus that made Xavian's temperature go up, also may have attacked Dante and I. Neither of us had much of an appetite and we're both extremely lethargic and tired. Kinda freaked out with all the talks around the Swine Virus!!

More updates to come later this week. Thanks for all of your prayers.

Inevitable Return to the Hospital

Today the inevitable happened, Xavian had to go back to the hospital b/c he was running a low grade fever. By the time Cassie got him to the clinic at Children's Hospital, his vitals were out of whack and his fever had gone up. He received platelets, fluids, and antibiotics. The antibiotics were precautionary since his white blood cell counts were so low. His fever has since dropped closer to a normal range.

We thought Xavian might have to stay in the Special Care Unit, but his vitals stabilized, so he'll probably just go to the oncology floor where we usually are, which is a good thing.

Hopefully he'll feel better and his vitals will remain stable and we won't have to stay long.

Please continue to pray that the good cells in his body can fight off the chemo and the bad cancer cells will wilt and die and that mommy, daddy, and dante can remain sane (or get back to sane).

Still home

Xavian and I just got back from clinic. His numbers are still very low-this is expected. He did not have to have a blood transfusion though. We will have to continue to watch for fever (100.5+) and bleeding/bruises. We are also limiting visitors right now and making sure that if anyone does come by they haven't been sick or haven't been around anyone that has been sick. I will be walking around with a can of Lysol for a few day too (thanks Regina). We will be heading back to the clinic Wednesday for another CBC. They suspect that he will have a blood/platelet transfusion then too. While we are there he will also get Vincristine (chemo drug). That is only an iv push though so we shouldn't be there long. If Xavian doesn't get fever (please pray he doesn't) then we won't have to be back at the hospital until May 20th. At that time they will do an MRI to see how the cancer is responding to the chemo. This will be the first MRI done since we first found out there was a mass and it was malignant.

Some friends in Jackson, MS found out their son had cancer right before we found out about Xavian. Please pray for them as well. You can read their blog here...

http://www.troyandvic.com/our-blog/

Round 2 Complete

I haven't posted in a while, sorry about that. We've been swamped. Lots going on.

Xavian's second round of chemo went very well. We were only in the hospital eight days. He cleared his MTX and handled the rest of the protocol very well. We were discharged Thursday and have been home since then. Xavian is feeling great and has done very well at home. He's been watching a lot of Baby Einstein and loves it. He hasn't gotten mouth sores and hasn't had fever, so that is a blessing. He's had some congestion and has vomited mucus from it, but has eaten well and seems to be gaining his appetite again. Tomorrow, he has a clinic visit for blood counts and a checkup. Hopefully everything will look good. We expect his white blood cell counts to be very low at this point in time.

So, for now we're home and doing well. It's so nice to all be here. I get a sick feeling when I think about having to go back to the hospital again, ugh. It has really worn on us, but I guess it's not supposed to be fun right :-\

We'll post again soon, maybe a "Dante Update" or something. Dante is doing great by the way. He and I went to Northpark Church in Trussville this morning. He had fun in the nursery and the service was cool, although I was dog tired.

Peace.

4/21 Update

This morning, before starting the chemo, Xavian will get a blood transfusion. Not sure how long that will take but we are still waiting for the blood to get here. He has a little more energy than he did yesterday after the chemo. He's not quite as pale either. Hopefully the blood will give him an extra boost. We will finish up this round tomorrow morning. Looking forward to going home Thursday morning (praying nothing goes wrong to keep us here). Once we get home we'll have to keep an eye on his temperature and make sure he's eating well. The night feeds will help a lot though. I think Xavian is ready to be in his swing at home and to be able to get on the floor and roll around. I know I'm ready for us to all be home together again.

Pictures and more...

I wrote an update on Xavian below but wanted to show some pictures of our week home together.



Going for a walk


Dante's walk in Granddaddy's pasture


Xavian happy to be home for Easter


Dante and his finished eggs


Dante and his eggs


Xavian and his find of the day


Dante is glad baby brother is home for Easter.


cat nap


Thanks to those in PA and all around for the wonderful prizes for Dante


Xavian on the way to start round two

Don't forget to read the post below for an update on round 2.

Moving on

Xavian's MTX level was down to that magic number (.1). We are now an hour into the next chemo drug that runs for a total of 4 hours. He's been sleeping most of the time because he was given benadryl to keep any allergic reaction that he may get down. Last time he got a rash so they also gave him a steroid to see if that helps. They keep a bp cuff on him that goes off every 15 minutes so he sometimes stirs then. If everything goes like it did the first round we should be able to go home either Wednesday or Thursday. Praying that when we go home we will get to stay more than one day. I expect him to have a blood and/or platelet transfusion before we head home. Thanks so much for the continued prayers.

Weekend Update

Xavian had a good day yesterday. He's looking good and seems to be feeling well. He laughed, sat up, and wiggled about a lot today. His Methotrexate levels are going down at a faster pace than during the first attempt at Round 2, so that is a blessing. Allison, our nurse practitioner, feels like the Methotrexate should clear his system by Sunday, which will be good because Xavian can then receive the remaining chemo medications in the protocol.

Not much else to report at this point. There are a ton of wet diapers to change due to the fact that Xavian is being given lots of fluids so that he doesn't get dehydrated and so the Methotrexate will clear his system more quickly. I changed about six diapers each of the last two nights.

Keep the prayers coming. Pray without ceasing (1 Thessalonians 5:17).

MTX

We finished with the MTX and his level came back at 905.70. He will now be getting leucovorin until that level gets to .1. Hopefully this will be Sunday and we can continue with the rest of chemo. Right now he is resting well. When he's awake he is so happy and talkative. Let's pray it continues to stay that.

Thanks to Terri and Ellory Sue for keeping Dante company this week.

A little video from before we came back to the hospital for treatment...

Redo

I will update more later (so sleepy, long night) but, Xavian started the MTX this morning at about eight. It will run for about four hours. They have increased the fluids so that hopefully this time he can clear the MTX in time to finish this round. The increased fluids makes for a very wet diaper just about every hour. So, at night I have to get up frequently to change his diaper. He usually doesn't wake so that good. Only once did I have to change his sheets and clothes and that was at eight this morning. It's going to be a long day for sure...

Round 2 Cancelled

We were discharged Saturday morning as Xavian's Methotrexate levels reached a safe level for us to go home and let his body recover for a few days before restarting the 2nd round of chemo. These chemo protocols are designed to work in specific ways. In the protocol that is being used for Xavian, the different chemo drugs work together to achieve a goal. If one of the drugs doesn't or can't do it's part, then the entire protocol is in jeopardy. That basically describes what happened during Xavian's 2nd round of chemo. The Methotrexate didn't do it's part because something in Xavian's body wouldn't let it leave. The Methotrexate levels stayed too high for too long and the safest thing to do once it was at a safe level was to let Xavian's body rest and prepare for the next round. Some of his cell counts were lower than normal range, but the counts weren't too low to continue the 2nd round, the doctors simply didn't want to give Xavian more than they thought his body could handle. While this is an extremely aggressive set of chemo treatments, they doctors are being very careful to not give Xavian more than his body can handle. As you can imagine with a four month old, it's a difficult balancing act. That's why they make the big bucks.

So where do we go from here? Wednesday we will visit the clinic to see if Xavian is ready to start the 2nd round again. Let's hope he can start and we can knock this cancer out! As much as it sucks to live half your life in a hospital room, we'll do whatever it takes to get Xavian healthy!

We're at home trying to rest. We're still in transition mode after recently moving into our new home, so it isn't where we want it to be yet, but it is a home and we do have plenty of room now, so we're thankful for that.

Dante continues to be a wild, sweet kid and is doing well. We're thankful for that as well. It's about time for him to get another haircut. I think his hair grows faster than his mom's hair.

For all of our prayer warriors out there, please continue to pray for us. We need the following...

• Patience


• Strength


• Healing for Xavian's body


• Rest for Cassie and Matt


• Feelings of security for Dante when Cassie and I are away from him


• Ability for me to take care of my family and balance everything else in life (work, health, financial, etc.)
  

God Bless!

Levels up again

The MTX level has gone up again today. As of this morning it's at .4. Now we are trying some of the other options. As I sit here and type Xavian is getting charcoal through his feeding tube. It will be given over an hour and a half. Hopefully this will bring it down.

In the mean time they want me to stop breastfeeding for the day and only give him formula. This is going to be a challenge in it's self because he won't take a bottle. I just tried before they started the charcoal and he didn't want anything to do with it. He finally just fell asleep. He's in and out of sleep right now and I can tell that he's hungry. If he continues on like this they will feed him through the tube (that's why they put it in). They are also going to do an ultrasound on his belly to make sure there is no fluid that could possibly be holding the MTX.

He still has not gotten any mouth sores...praise God. They will draw blood for another MTX level at three. I will try and post as soon as I know something. Well, I smell a poopy that needs to be changed (they put a laxative in the charcoal).