Monday, August 31, 2009
Tomorrow is the beginning of Childhood Cancer Awareness Month. Check this site to see what you can do to help...
and a direct link to sign the Childhood Cancer petition...
PLEASE pass that along to everyone you know. If not for me, for this face...
Wednesday, July 22, 2009
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, encourageme
You can follow us more at our Carinbridge site (I update it more often) here...
Monday, July 6, 2009
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 neurosurger
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
Thursday, July 2, 2009
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
Monday, June 29, 2009
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
Thursday, June 25, 2009
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.
Wednesday, June 24, 2009
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.
Tuesday, June 23, 2009
I spoke to one of the doctors this morning and they are probably going to just turn his feed on really low and leave it there all day, instead of turning it up by 5mL every four hours. Hopefully this will keep the vomiting at bay. I had a lot of breast milk stored up from the times I had to pump in the past. I'm using that for the feeds in hopes that will get his counts up quicker. Who knows...breast is best, right?
Please pray that Xavian will begin either eating from a bottle or at least tolerating his feeds. He really needs the nutrition. Pray his body will start making bone marrow again, his numbers need to come up so we can go home. Pray for Matt as he is going back and forth from work, the hospital and home with Dante. Pray for Dante. I think all this is starting to wear on him too. He is always asking for "baby brother". Oh yea, Xavian is getting blood today and probably platelets tomorrow. So, thanks to all those that donate. Those that don't and could, you should. Take a look at this link below and do what you can to help us and all our "c" friends.
I found this site on another CB and find it very interesting...
"When I despair, I remember that all through this the ways of truth and love have always won. There have been tyrants, and murderers, and for a time they can seem invincible, but in the end they always fall. Think of it--always." –Author Unknown
- Swine Flu 2009: 15 confirmed U.S. deaths as of June 1, 2009 at 2:41 PM
- Childhood Cancer 2008: OVER 3,000 children dead in the U.S.
- Swine Flu Government Funding: OVER $1.5 BILLION
- Childhood Cancer Act Government Funding: $150 MILLION in funding spread over 5 years
Stand Up 2 Cancer Awards $73.6 million to 5 Dream Teams
Thank you to Brenda Everson-Wiesman (TEAM DREW W) for the article below!
The five Dream Teams are: Epigenetic Therapy, Women's Cancers, Breast Cancer,Tumor Cells Chip, and Pancreatic Cancer. No mention of childhood cancer as of yet except possible pediatric innovative research grants to be awarded later. Things we can do:
1. Go to http://www.standup2cancer.org and read the announcement about the Dream Teams being awarded the money recently. Log in a comment.
2. On the same site, go to the "Magazine" and then the SU2C blog and leave a comment for Lisa Paulsen who wrote "Outpouring of Support Gives Hope Against Cancer." Lisa is the President and CEO of the Entertainment Industry Foundation (EIF). Ask for children's cancers to get their own show like I did if SU2C is not going to give pediatric cancers much funding.
3.Go to the American Association of Cancer Research site at www.aacr.org and use the "contact us" button to email this group who is the scientific arm of SU2C. Ask why pediatric cancer was not included in one of the Dream Teams.
4. Go to http://www.cbsnews.com and email Katie Couric under Couric and Co. about the need for special reporting about how childhood cancer is only receiving 3% of the research funding. Katie is also on the executive board of SU2C.
5. On the Katie Couric site you can add a comment to her story "Disparity in Cancer Research Funding." Pediatric cancer was not listed but breast cancer was listed as one of the ones getting the most research money. Of course we all want to see an end to breast cancers and all cancers but... we want more money for the childhood cancers which are under funded.
6. If anyone has any contacts to the SU2C show, you could ask them why pediatric cancer was not included when the stories and photos of the kids were used. Also the team Crushing Kids Cancer raised $47,000 for the show and was the top team.
7. Any other suggestions welcome. I know some of this is a re posting of earlier items this week but I feel that it deserves it's own discussion as the earlier info was not clear, my fault.
8. SU2C just announced a new bunch of celebrities to help the cause. Sounds like a new show might be in the works. Maybe in Sept. again? How can we get them more involved with our cause? Can we get them to join PAC2 (ED: or Team Unite)? Can they say that Sept. is childhood cancer awareness month on the show? Will they be contacting parents of kids fighting cancer and if so, what should be our response? Ideas?
September is Childhood Cancer Awareness Month and September 13th is Childhood Cancer Awareness DAY!!! HELP US IN OUR UNIFIED EFFORT TO CONQUER CHILDHOOD CANCER. in the words of our own, TEAM ALEXA - “CANCER, YOU'RE FIRED!!!”
Anyone can help promote childhood cancer awareness and research. Do you have success stories of how you’ve made a difference? Please share your ideas on how to get the word out that September is Childhood Cancer Awareness Month and that the 13th is Childhood Cancer Awareness Day. Join us in our unified effort. Together we can raise awareness for September and of course; AWARENESS = FUNDING for RESEARCH = A CURE!!!!
Easy GOLD RIBBON CAMPAIGN!!!
Start by wearing a gold ribbon or awareness gear yourself! Anyone with ribbon, scissors and glue can make them or you can order them on line. Better yet, organize a group of volunteers to make gold ribbons that can then be handed out at events with a flier attached stating the reason to wear the gold ribbon (symbol for childhood cancer).
If you need a source for September gear, please visit www.cafepress.com/teamunite today to order your childhood cancer awareness items! Please note that Team Unite is not a fund raising group. We give 100% of the proceeds from the sale of the September gear to support childhood cancer awareness campaigns.
Please share information and news. Did you hear a story on the news or read something on line or in print? Please share that information at http://teamunite.net/forum/. We need to know who out there is helping promote childhood cancer research by airing or writing stories having to do with our fight! As a unified group we must each reach out and thank these people and encourage more coverage!
Saturday, June 20, 2009
I spent Friday night and this afternoon at home with Matt and Dante. So, when I got back the nurses let me know the doctors wanted to go ahead and put the TP tube back down since he hadn't eaten enough. But, I told them I was worried that his platelets were low. They checked to see what they actually were. I was surprised they hadn't already given him platelets when they came back and said they went from being 20 on Friday to 8. The hospital was waiting to get a shipment of platelets and blood from Red Cross. Once that gets here hopefully he can get some and then they will put his TP tube back down so they can start feeds again.
It's pretty much just a waiting game at this point. His bone marrow has taken quite a beating after the 3.5 rounds of chemo so it will take a little longer for his counts to come back up.
Thanks for the continued prayers.
Monday, June 15, 2009
We are back. At the Chilton (Children's Hospital) that is. Room 439 this time. We were discharged Friday morning and had a good time at home until Xavian started vomiting and not eating. Saturday night Matt and I were giving Xavian his meds and starting his nightly feeds when he threw all his meds up. His feeding tube started coming up too. We decided we couldn't wait until our clinic visit on Monday to get him checked out. Matt said he would take Xavian to the ER while I stayed with Dante because he was already asleep. We called the on call nurse to let her know (we had already talked to her earlier that day). She said she would call the ER to let them know we were on our way. Well, when Matt got there she had not called yet. In fact, as far as we know, she never called. She had a good 30 minutes to call. ARRRGGG! That really made me mad. I still have to talk to our nurse about that. Matt said that the doctors in the ER said that his glucose was low and we did the right thing bringing him in because at the rate he was vomiting he would have been dehydrated by Monday. They also said that he looked good for having gone through 3.5 rounds of chemo. Once they started the bolus (fluid) he had a surge of energy. They also decreased his feeds to 5mL/hour throughout the whole day.
I got to the hospital Sunday afternoon to trade out with Matt and could tell Xavian was feeling much better. He was moving all around and talking. He even spent a lot of time with the nurses at the nurses station. They wore him out because he took a good nap.
This morning the doctors decided to increase his feeds to 10mL/hr. They will continue to increase the feeds and decrease his iv fluids as long as he tolerates the feed. He is also getting blood as I type because his hematocrit was low. They also had to add potassium to his iv fluids because that was low as well. His platelets are low but he is not getting some today. Maybe tomorrow. He has not had fever so that's good. But, the doctors seem to think that he will because his white count is sooooo low. So, looks like we will be here for awhile. I am praying that it won't take as long for his white count to come back up so we can go back home.
All this back and forth from home to hospital is so taxing on my sanity, sleep, health and every other aspect of life in general. I really need a whole week to catch up on sleep but will take a day (if I could get it). We still don't know what the future holds for Xavian when it comes to more treatments or not. As soon as we know something we will update. I tend to update the CaringBridge site more because it's easier to get on and just post a little update. You can follow it here...
Please pray for...
1. Rest and Peace for us all
2. Xavian's white counts to rise
3. No fever
4. Xavian's complete healing
5. Other families fighting this stupid illness (cancer) together
Wednesday, June 10, 2009
Even before all that Xavian had a crying fest for about an hour. Tylenol, Benadryl, Orajel, Zofran...nothing seemed to help. So, I just cried right along with him. I am sorry for our neighbors if he kept you up. On top of that I had a migraine. My aunt came to the rescue and stayed here with me. She got here just in time for me to run to the bathroom and get sick. Thanks Aunt Nawnie...
We have started today's chemo drugs. The Dr. wanted to start earlier today in case of any reactions he may have. Tomorrow he will be getting Cisplatin (the one that caused some of his hearing loss). They've decided to cut the does by half. The Dr explained that it is still a pretty heavy dose and his numbers will still come down. Once we finish on Thursday he will get fluids the rest of the day and through out the night. Friday morning I am hoping we will be able to go home (for the weekend at least). I expect we will be back here next week for low counts or fever or some other side effect.
I continue to pray that this is the last round Xavian will ever have to do. Also, that once we start his feeds back up that he won't throw up as much. I pray that he will start to eat more on his own during the day as well as no mouth sores. I ask that you pray with us in these things as well. Thanks so much!
An update on Dante...He had his two year check up yesterday and is doing great beside the little stomach virus he has. He isn't running fever or acts as if he feels bad either. He will just throw up and then go about his business. He weighed 24 pounds (10th percentile) and was 36 1/4 inches (90th percentile). The Dr seems to think he will be around 6 foot 2. How they figure that, I don't know. He is still our loving, hugging, kissing little man though. I will try and post some pictures later tonight from our trip to ATL.
Please continue to pray for all the families that have lost their children to cancer. Pray for those that are going through treatment as well. Go donate blood/plasma.
Thursday, June 4, 2009
Tomorrow is big brother Dante's second birthday. Grammy (Matt's mom) will be here tomorrow afternoon to stay with Xavian while Matt and I take Dante to Atlanta for the weekend. We are going to stay with Matt's sister, husband and their two boys. Saturday we will take Dante to the aquarium. I think we are all looking forward to that. I'm also looking forward to seeing Dante tonight. He's been in Montevallo with my aunt and cousin since Monday. He has been going to their church's VBS all week. I hear he loves the music, showing off his dance moves I'm sure.
I met a mother here whose 5 month old little boy was just diagnosed with AML. I remember the day we found out Xavian had cancer and know exactly what she is going through right now. Please pray for Colby and his family.
Still waiting to hear from the neurosurgeon...
I have also set up a CaringBridge site for Xavian (it's been up for a month I guess)
Wednesday, June 3, 2009
Specific prayer request:
1. Xavian will be able to clear the MTX so we can finish this round
2. The surgeon clears him to finish this round
3. NO mouth sores
4. NO allergic reaction to any of the chemo drugs
5. Safe travels and Matt and I take Dante to Atlanta for his birthday
6. Xavian won't have a break down while his Grammy stays with him this weekend
7. Tucker Beam and Megan Brittian's families
8. All the other families that are in this fight and on this floor
Monday, June 1, 2009
We had planned on taking Dante to the Atlanta aquarium this weekend for his 2nd birthday. I should know by now that God has other plans. Matt's mom has volunteered to come stay at the hospital for a day or two so that we can still take him.
I'm not really looking forward to the nights on a pull out bed/chair at the hospital but I will do what needs to be done so that Xavian can be well again. There are families at Children's that have been there longer than I even want to think about. Please continue to keep us all in your prayers as we are all in this fight together.
X Man and Daddy
Loves the grass between his toes (look at those thunder thighs)
Friday, May 29, 2009
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.
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!
Tuesday, May 26, 2009
Thursday, May 21, 2009
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!!
Wednesday, May 20, 2009
I will update as soon as we get home and settled back down. Please continue to pray...
Monday, May 18, 2009
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?
Saturday, May 16, 2009
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.
Xavian and his full belly
Getting so big!
Dante helping daddy water the grass (before all the rain started).
Friday, May 15, 2009
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.
Wednesday, May 13, 2009
Xavian is sleeping so I am going to pack our things. You'd think we actually live here with all the "stuff" that accumulated.
Tuesday, May 12, 2009
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.
Thursday, May 7, 2009
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.
Wednesday, April 29, 2009
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.
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).
Monday, April 27, 2009
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...
Sunday, April 26, 2009
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.
Tuesday, April 21, 2009
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.
Monday, April 20, 2009
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.
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.
Saturday, April 18, 2009
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).
Thursday, April 16, 2009
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...
Sunday, April 5, 2009
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...
- 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.)
Wednesday, April 1, 2009
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).
Tuesday, March 31, 2009
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, March 29, 2009
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.
Friday, March 27, 2009
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.
Saturday, March 21, 2009
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.
Monday, March 16, 2009
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 ;-)
Saturday, March 14, 2009
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
- 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