6 months

Wow, I can't believe that Xavian is already 6 months (and five days). The past three months have just flown by. It's been a tough three months but I am so grateful that we have gotten to see Xavian turn 6 months.

Things I never thought I would have to do for, hear about or see my child go through before turning 6 months...

1. "You need to come to the hospital ASAP, your son has stopped breathing (but has been intubated)" Not the best way to tell a parent to come to the hospital (during rush hour).

2. Your son has a mass on his brain...this mass is cancer (less than 40% chance of curing)

3. giving daily shots (although Matt takes care of this one)

4. toxic chemicals being pushed into his blood stream

5. having a blood/platelet transfusion

6. having ulcers cover the inside of his mouth all the way down his GI

7. having a feeding tube put down his nose, bypassing his stomach into the intestine (I had to hold him down while this was done), and having to learn how to use the feeding pump to give him proper nutrition

8. losing his hair, eyebrows, and eyelashes

9. sleeping through the night for the first time in a hospital crib

10. having to remember what medicines to give and when (at one point we were giving him 7 different meds at one time)

11. having to clean, flush and properly take care of his central line

All these are things Matt and I are willing to go through to have Xavian with us today. Matt, Dante and I are so blessed to have him here with us.

Philppians 1:3-6

This path we are traveling along is all a part of God's plan for Xavian's life and the life of Matt and I as his parents. I am grateful that I get to call Xavian my son.



Xavian and Dante




Cousin Darnell comes for a visit



Darnell wants some of that food you are getting Xavian

I just heard from our nurse that the surgeon doesn't think Xavian needs surgery right now to remove the fluid. He does want to keep an eye on it though and wants to check him out before starting the third round of chemo. As of now that appointment is for June 11th. I will take him back to the clinic to have his counts checked though. Xavian is rolling from belly to back and back to belly now. He can just about sit up on his own. The only thing I am concerned about is that he isn't reaching for things yet. He will bring his hands to his mouth and eyes to check them out. And, of course he will push up on his arms when laying on his belly. Who knows, maybe I'm paranoid (I have reason to be). That's about all he will do with them right now. I'll have this conversation with the surgeon too. You can't understand how relieved I am that he isn't going to need a 2nd brain surgery right now. Although, I'd like to get the 3rd round over with I am super pumped about being home for such a long time.

Everyone have a wonderful weekend and tell those babies you love them!

Prayers for Tucker

I am asking all of our prayer warriors to please pray for a little boy here in AL that needs some prayers lifted up RIGHT now...

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

MRI Results

Today started very early for us, we left our house at 5:30am for Xavian's MRI at Children's Hospital. This early departure would have been challenging normally, but it was extra challenging this morning because Dante had been up throughout the night. He's got pink eye and a double ear infection. Cassie got a migraine late last night, but the medication she took last night and this morning didn't work, so she's been vomiting most of the day and is now pretty much immobilized. I went to the urgent care clinic in Trussville last night because I felt horrible and found out that I have strep throat. Xavian, surprisingly is the healthiest of us all right now.

Xavian's anesthesia went well this morning and the team was able to get all the detailed pictures they needed with the MRI. We waited for approximately an hour before our doc came in with the results. We all slept the whole time. The results of the MRI showed a significant decrease in the residual tumor. Doc told us that it looked like most of the tumor was gone and that she was pleased with how it looked and how he looked and it was all good news. She also talked to us about a possible procedure for removing fluid from a small pocket where the tumor had shrunk into protein type matter (or something like that). It's something they expect, but sometimes they feel it necessary to remove some of the fluid, but not all of the fluid. That part was a little confusing, so we'll have to do some research to get further clarification. Doc seemed upbeat about everything and said that she didn't know if we would start the next round of chemo next week or if we would do the procedure to remove fluid next week. Our nurse practitioner will call us and let us know in a few days.

I've had a ton of text messages and calls, but I haven't really been able to respond to anyone, but just know that we really appreciate everyone's thoughts, prayers, and caring. It means a great deal to us and it makes a difference, there's no doubt about it.

Dante is feeling much better today than he was yesterday, so he went with his Nana to Montevallo for the rest of the day and tonight, so that Cassie and I could get some rest since we're both feeling pretty rough. Xavian has been a wild man since we got home and is now resting, so hopefully Cassie and I both can take a much needed nap and start feeling better.

Thanks again for all the prayers. There is still more work to do, so please continue to pray for healing and strength.

The good news is very refreshing!!

MRI

Xavian is have the MRI done as I type. It should take about 30 minutes. They did have to sedate him so he would be still. Kind of hard getting a 6 month old to be still without sedation. Once he is out and awake I can feed him (he was getting pretty hungry since he hadn't eaten since 11). We will then go back down to clinic to go over the results with Dr. Reddy. I wasn't anxious about the results because I thought it would take a few days before they would tell us. Now that I know we will find out in an hour or so I am all of a sudden anxious.

I will update as soon as we get home and settled back down. Please continue to pray...

Clinic

We are back home. Didn't have to stay long this time. Xavian didn't need any sort of transfusion today. Numbers are starting to come up. His ANC is still low (406). This needs to be at least 1000 before we can start the last round of chemo. More than likely it will get pushed back a week. Although I enjoy being home I'd rather start this last round and get it over with and behind us. We go back to clinic on Wednesday at 1pm. Xavian will have more labs done and we will meet with Dr. Reddy to determine what our next step will be. The MRI is scheduled for 3 that afternoon. We will try to post something shortly after all that.

Dante update - Matt got him to go to bed last night without his paci. He has also gone down for his afternoon nap today without it. I thought it was going to be a lot harder than it was. Both he and Xavian are growing up too fast for me! Xavian will be six months on the 24th of this month and Dante will turn 2 June 5th. Where as the time gone?

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Dante meets Xavian for the first time

Dante Pierce Hall 6.5.2007

Xavian Beckett Hall 11.24.2008

Pictures

Doing a happy dance because we are going home after "living" two weeks at CH.



A few of our favorite nurses and and my friend George Noah



Dante was excited to see baby brother at home. Xavian doesn't look so excited, but he was.



A daddy and his proteges.



Mommy's boy.



Xavian and his full belly



Getting so big!



Dante helping daddy water the grass (before all the rain started).



All smiles.

A long day

This morning I had to have Xavian at clinic for lab draws at 8:30am. We got there and had the blood drawn in no time. He has gained one pound! We waited a bit and got called back to a room. The nurse told me that Xavian was very neutropenic. His hematocrit levels were down from 29 (when we left the hospital on Wed) to 22. One of the doctors came in and told me he would have to get some red blood before we left. Ok, no big deal. The thing is they didn't have blood ready for him so we waited nearly 1.5 hours to have the blood delivered. Xavian's blood type is O+ and he is CMV- so, it takes a little longer to match him. If you know you are CMV- please donate. Most infants/children are negative and those on chemo NEED blood and/or platelets. You can also donate for a specific person (Xavian or Ryan). Anyways, Xavian was finally hooked up and started the transfusion at 12:45pm. The transfusion wasn't complete until 4:15. Other patients came and went...we were the last ones to leave. Only a few nurses were still there when we left. We will have to be back at clinic on Monday to check his levels again. If his numbers aren't up to a certain level they will post pone the last round for a week until they come up. We have an MRI scheduled for Wednesday at 3pm. This will take place even if they post pone the third round. I am a little anxious for the MRI. Our nurse practitioner also said they may lower the dose of chemo that Xavian has been getting. I'm not quite sure why that is though.

Xavian and I finally got home at 5pm. Just in time to run next door and pick up Dante. Our neighbors have been so generous and helpful while we are going through this. Our friend had to go substitute at her daughters school so she just took Dante with her. Matt said she was a little anxious about having him there, she wasn't sure if he would get upset not knowing her that well. When I picked him up she said he is so laid back that he just went with the flow (they were on the go all day). He didn't have a nap at all so I am hoping he sleeps well tonight.

We don't have anything planned this weekend. We need to keep Xavian in since his immune system is pretty much shot. We will just be at our new house enjoying our new furniture as a family together again.

Busting out...

The Dr. just came by and said we can go home! YAY! I did a happy dance and the nurses laughed at me. Xavian's numbers aren't were they should be but they said we've been here long enough and he hasn't developed a fever so, we can go. We will have to come back to the clinic for labs on Friday. Then we have the MRI scheduled for next Wednesday at 1pm. We will also be admitted Wednesday and start the last round of chemo on Thursday (May 21).

Xavian is sleeping so I am going to pack our things. You'd think we actually live here with all the "stuff" that accumulated.

Hospital fold-outs are for criminals

Xavian is doing well. He slept fairly sound last night, but it seemed like nurses or CAs were coming in every 10 minutes. It just seemed that way. Some of his counts are up, but not all of them, so we're still in the hospital. It's been almost two weeks since we were admitted, but some families are here for months at a time and live several hours away instead of 15 minutes away, so it could be much worse. It could always be much worse! It's like they told me when I was a kid. You may think you're tough, but there is always someone else out there that can kick your butt. Not sure what that has to do with anything, but I thought it was funny, still do.

Anyway, Xavian's white counts are higher today, so that's great news. Usually once those counts start rising, they seem to rise to a safe level on a steep grade.

Peace.

The Zoo, Mother's Day, Furniture, Low counts...

I got a zoo pass so Dante could have some fun this summer while we are back and forth to the hospital. My aunt (Lawana) and cousin (Sarah) went with Dante and me this past time. It took him a little bit to get use to the water area. Once he did, he LOVED it!




I hope everyone had a great Mother's Day and celebrated with their mothers. Thanks to Matt's mom (Vonda) I got to spend this day at home with Matt and Dante. It was very uneventful. That was fine with me. I need some uneventful days. Vonda came in town Friday around 1:30 and relieved me from hospital duties. She stayed here until Sunday afternoon. It gave Matt and I much needed break.

Saturday we got some of our living room furniture and wall prints delivered. Wahoo! Now when you come to visit you will have a place to sit. ;) We are still waiting on some of our other furniture but, it's looking more like a home to us. We are also looking at getting a fence put up. That will be nice so Matt won't lose Dante anymore (that's another story).

Xavian is doing well. He received some platelets today. It wasn't totally necessary but there were some at the bank that would expire tomorrow so they went ahead and gave them to him. I encourage anyone that can donate blood/platelets to do so. His WBC is still zero but the ANC has gone from zero to 150. We are praying this will be the turn around and his WBC will start to come up so we can go home. We have now been at the hospital for 11 days waiting for counts to come up. We've been through 4 tornado warnings, moving out to the hall every time. We did get to spend nurse appreciation week up here though...Dante made cookies for all the nurses. He's a big flirt when he comes to visit. I guess Xavian learned that from Dante. The nurses and C.A.s love to come get Xavian and take him to their station. Matt and I love it too because it gives us a break.

Please continue to pray for Xavian...his complete healing but more urgent, his WBC to come up. Also, we have met so many other "c" friends either here on the floor or down in the clinic. Please pray for those that are also going through treatments, procedures, relapse, and remission. Thank you to all our blog followers for praying faithfully. One day Xavian will be able to understand the power of your prayers.