Wednesday, July 22, 2009

More chemo

Just got back from clinic...

Xavian has gained some weight back. This is good considering he won't take any liquids by mouth. This past week I did get him to start eating baby food though. Dr Reddy said we may need to have occupational therapy work with him on the liquids. She said that after some babies don't eat a while they need to relearn. Not sure how I feel about that though because he is eating baby food and will suck on his paci all day long. I think he has gotten lazy and use to the feeding tube. We will have OT/PT come work with him on some other skills (sitting up and grasping things).

Dr Reddy wants to make sure Xavian gets a total of "at least" six rounds of chemo. We've had three so far. Plus half of one that didn't get completed :( She wants to start the fourth as soon as possible. She said she'd give us another week home though. THANK YOU! So, we get admitted to Children's here in Birmingham, AL on August 3rd. The treatment will last a week. We will then have the MRI sometime after that when his numbers come back up from taking a beating from all the chemo.

Of course if we think Xavian has had enough, we could always stop the treatment. I'm not sure I could stop them. As rough as the chemo is on his little body it is working. Please pray that these last three rounds will kill ALL cancer cells and we can be done with chemo by his first birthday! It's hard to believe that in two days Xavian will be eight months old and he was only eight weeks when all this started. So unfair for such a small child! I really could go on but, I will spare you. Please pray for a cure! Please pray that Matt and I will continue to hold on to our faith and sanity during these next three months. It can only get easier right?

Well, I need to finish eating my lunch and go get Dante. I will continue to keep you faithful readers and prayer warriors up to date. Feel free to sing our guestbook and leave words of wisdom, encouragement, and prayers...the sure do help!

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Monday, July 6, 2009

Going home?

Wow, three days behind. Sorry about that. Matt was here with Xavian all weekend while I spent the holiday with Dante. It was nice to have a little break and get some much needed rest.

Friday night wasn't so great for Matt though. They actually increased the amount of morphine Xavian was getting. He was obviously in some pain. The neurosurgeon even came by and said he was concerned because he should be in that much pain. So, they did a CT to make sure the shunt was where it should be and working the way it should be. Results, it was right were it needed to be and was working just fine.

Saturday I think Xavian pretty much rested and slept all day. Matt had a good view (from the room window) of the fireworks over Red Mountain. Sunday morning Xavian had his feeding tube put back in. They started his feeds off slow and bumped them up every six hours until they got them to where it needed to be. He is no longer on his TPN (yay!).

As I type Xavian is getting red blood. I am hoping this will give him some pep. He is still a little irritable but hasn't had morphine since early this morning. He even smiled a little! Once he finishes the blood he won't be hooked up to anything except his feeds. I am hoping this means we can go home tomorrow or Wednesday. In fact, our nurse just came in and said the neurosurgery nurse is coming by to teach me about the shunt care. Maybe when this is all said and done I can be a nurse too. Just kidding. I know the nurses go through some tough schooling, but gosh I feel like I take over once we get home.

Thanks for all your continued prayers. Some specific prayer requests...

*continued comfort for Xavian
*NO infection from the shunt
*NO new tumor cells (causing us to have the shunt)
*an uneventful stay at home

and specifically for this little girls family...

Thursday, July 2, 2009


Surgery is a go...first thing Friday morning (tomorrow). Xavian's ANC was 2082 this morning! Yesterday it was 736. Thanks for all those prayers...they worked! His platelet count is 45. So, he is getting platelets right now and will get some more tonight at 10. They will check his counts in the middle of the night to see if he has held on to the platelets and then will decide if he needs more before surgery. We are really ready to get this surgery done so that the pressure can be relieved and Xavian will be more comfortable.

Dr. Rozelle explained to me this morning that the catheter will be placed on the right side of Xavian's head (where he had previous surgery to remove the tumor). It will then go down behind his ear and down to his stomach. There, the fluid will be absorbed. He is at greater risk of infection. I don't like to use statistics because my son is not a number...but, he said his chances are 1 in 10 in getting infection because of the chemo he has gotten. If Xavian gets an infection they will have to go back in, remove the shunt, place an external drain, give him antibiotics and then replace the shunt after the infection is cleared. This would be anywhere from 7 to 10 days (all in the hospital of course). He said with babies (especially those on chemo) are more likely to have more surgeries months or years after the first procedure. This can continue up to two years.

Most kids can go home 24 hours after this kind of procedure but we aren't sure what will happen with Xavian. Talking to our hem/onc doctors we will be here through the weekend. They will also place the TP tube back so that we can get him off TPN and get his nutrition back to where it needs to be.

We still are not sure what caused the obstruction in the fluid draining. The surgeon will take some of the fluid and send it to be tested to make sure no tumor cells have developed. The other reason is that the cyst could have caused everything to shift over and obstruct the pathway. Praying for the later.

Tomorrow will be a month since we've been here. The first week Xavian had his third round of chemo. We went home for 1.5 days. Since then we've been here dealing with low counts and hydrocephalus. Praying we can go home next week.

Immediate prayer request
1. Smooth surgery tomorrow
2. Knowledge and skill for those taking care of Xavian
3. Smooth recovery, no complications (ie: infection)
4. No new tumor cells
5. Cure for childhood cancer