Childhood Cancer Awareness Month

I hope you all have been following us on our Caringbridge. It's so much easier to update.

Tomorrow is the beginning of Childhood Cancer Awareness Month. Check this site to see what you can do to help...

http://www.teamunite.net/

and a direct link to sign the Childhood Cancer petition...

http://www.thepetitionsite.com/1/CureChildhoodCancer

PLEASE pass that along to everyone you know. If not for me, for this face...

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!

You can follow us more at our Carinbridge site (I update it more often) here...

http://www.caringbridge.org/visit/xavianbecketthall

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
*A CURE FOR CHILDHOOD CANCER

and specifically for this little girls family...
http://www.caringbridge.org/visit/alexabrown

Surgery

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

I am Back

Back here at CH. Xavian looks better. Matt told me he got him to take 8mL of formula today (30mL = 1 ounce). That's such an improvement.

He is still getting nutrition from the TPN. It is still important to try and keep him eating on his own though. There was no CT today and there won't be one tomorrow. Neurosurgery had decided the shunt needs to be put in regardless. So, there really is no need to do another CT. We are still monitoring his heart rate, eyes and fontanelle. We are all hoping and praying that his counts are up so that can be done the end of this week. I haven't seen a print out of his counts just yet but I think the ANC is 500. Two days ago it was zero.

Right now I want to thank Mel and Rita (two co-workers of Matt). They have volunteered to bring Matt and I dinners when we stay here with Xavian. Also, thanks to all the church groups that made us dinner when we are at home. They all have been a wonderful blessing. It is such a stress reliever when you don't have to worry about what you are going to eat. "Living" at the hospital can also get expensive if you are having to eat every meal in the cafe. So, thanks Mel and Rita and all the others we have not had the chance to meet for meeting one of our needs during this time.

Please pray for...
1. complete healing for Xavian
2. numbers to continue to increase rapidly
3. comfort for Xavian
4. less and less fluid build up
5. a CURE for childhood cancer
6. other families fighting this disease

CT and Surgery?

What a journey this has been. Yesterday Xavian had a CT done because he continued to be fussy and the vomiting was not easing up. The CT showed his left ventricle was larger than the MRI that was done 3 weeks ago. It is larger because something is obstructing the CSF from draining properly. The way to solve this problem is by putting a shunt in Xavian's head to drain the CSF (to his belly). The problem is they can't do the surgery because his white count is pretty much zero (0.08). There is a risk of infection when his counts are this low if they were to introduce something foreign into his body. To send us home his counts can be 200. To do the surgery they have to be to a normal level (between 4,300 and 10,800). Because Xavian has had 3.5 rounds of chemo his bone marrow is pretty much shot. They tell me it could take longer for counts to get where they need to be. Time is not on our side here...

We will continue to monitor Xavian by measuring his head circumference every day. The beginning of next week another head CT will be done to see if there is any more change. If he worsens they will have to stick a needle in through the sutures (joints between the plates in the skull) to pull some of the fluid out. Instead of sticking the needle through the ventricle to drain the fluid they will stick it in the cavity that was created by the tumor to drain fluid from the cyst. This will prevent any damage to the healthy brain tissue.

Right now, Xavian will be on scheduled morphine to keep him comfortable. He will continue to get the maximum dose of Leukine to help boost his white count. Other than those we will play the waiting game, again.

Please pray that Xavian will find comfort with the meds and rest peacefully. Pray that his counts increase quickly. Pray for peace and comfort for Matt, Dante and myself. Pray that I or Matt will know what to ask our surgeons/doctors so we can fully understand what needs to be done.

No more feeding tube

Yesterday afternoon the nurses pulled Xavian's feeding tube, per doctors orders. The doctors had the pleasure to see him throw up all the mucus junk he'd been doing for several days. They think the tube was making him gag and extremely uncomfortable. Because he is still not eating anything PO (by mouth) they will start him on TPN (iv nutrition) this afternoon. So far, this morning Xavian has gotten platelets. This is expected. He is also not feeling very well. Very fussy! He'll doze off then wake up and can't get back to sleep. This makes him very agitated. I think he has some teeth trying to come in. That, combined with low counts make for a very unhappy 7 month old. Oh, that reminds me...Xavian is 7 months today. It's hard to believe we have spent 5 months, now, in and out of the hospital. Seems like it's been mostly IN.

We still don't know when another MRI will be ordered. This will determine when and if another round of chemo will be done.

Thanks to all that have kept our family in prayers these past 5 months. Thanks to those that have helped either with finances, food, or watching Dante when we can't be there. You all have made this difficult time that much easier. If that makes sense.

Xavian has finally settled down. So, I think I am going to take a nap too.