Monday, January 28, 2013

Staying Strong

Last week when I visited Jaxson and his family, we took a few photos.  I asked his mom and she said it was ok for me to post some here.  I had originally  had the idea of having Amber's "stay strong" tattoo in the picture with Jaxson and I think it turned out pretty neat.  She got the tattoo years ago, but I thought it had a special meaning for this journey that they are going down now (couldn't decide if I liked the black and white or color better on first picture!).










Jaxson seems to be doing good!  Please continue to pray for him!

Love,
The Scott Family

Sunday, January 27, 2013

Mother of the Year Award

This weekend Claire has been running a fever.  Not sure what is going on with her but she acts perfectly normal.  It started Friday night after her bath, I noticed she was breathing fast or "hassling" like a dog.  I didn't think too much but as the night went on and she was playing before bedtime, I realized she felt hot.  So I turned on her fan and cool mist humidifier hoping it would help.  See, I had bumped the heat up that night at supper from 70 to 73.  So my first thought was she was just hot since the heat was higher.

But then I thought she felt really hot.  I checked her temperature and it was 102! I checked it again and it was 103!  I freaked out, ran and got her some milk and tylenol and she drank it down.  I took her fleece PJs off and put on some thin cotton ones.  She still acted fine.  She went to bed and I checked her temp throughout the night and it ranged from 100-102.  She continued to hassle all night even though I turned the heat back down.

I woke her up at 7 am to give her some juice as I didn't want her to get dehydrated.  I checked her temp in her room and it was like 101.  Fifteen minutes later it was 99.5 after we went into the den.  So then I started wondering if I had basically burned my child up in her room all night with the heat!  I felt so bad.

But then as the day went on, I realized she still had a temperature ranging from 100-102.  So then I knew I did not need to feel bad that I won the Mother of the Year Award for burning up my child with the heat in her room.

But we still are not sure what is going on.  Claire is still running a low grade fever today.  Ranging from 99-100.  So we will just watch her and see.  She still acts normal and happy.

Please pray that whatever is going on that it goes away as quickly as it came!  So much for trying to be protector of Claire and not take her to her eye appointment to avoid getting sick.  I guess it happened anyway!

Love,
The Scott Family

Saturday, January 26, 2013

Jesus Loves Me

video

In case you cannot tell what she is singing:

"Jesus loves me, this I know.  For the Bible tells me so."

So sweet.

Love,
The Scott Family

Thursday, January 24, 2013

Catching up

Catching up on few things I have had on my mind lately....

Claire was supposed to go to Duke today for eye check up.  But after my germ-a-phobe self thought about how bad it was going to be in the tiny, packed waiting room with other people who may or may not be sick, I called and rescheduled it.  Yes, I know it was at the eye doctor and not a medical doctor's office.  But still, that waiting room was really packed last time we went..... 

So I had asked for the day off anyway, so I decided to go up and visit Jax and his family.  We had talked about me taking some family pictures of them a few months ago, but it just never worked out.  So I thought it would be a fun diversion today to go up and take some pictures.  Jax is back in a regular room and the only wire he had attached (besides his port) when I got there today was his pulse ox!  YAY!  His mom dressed him up in super cute clothes and we proceeded to do the best we could in a small hospital room to take a family photo and then some of Jax and Amber.  I hope she will like them even though I am not the best photographer.  You would think I would be good at taking hospital photos as many as I took of Claire!  haha  Maybe I will get to share some here on the blog.  Need to ask permission first.  There is one super good one that I love....  Anyways, Jax is doing awesome!!  He even started a new dancing thing today while I was there.  :)  It's just a sit and wait deal now. 

I have also learned a little about a very special organization that has been helping Jax and his family while in Greenville.  Check out their website at:  http://www.rileysarmy.com/.  They are awesome volunteers and so very comforting and encouraging to families dealing with pediatric cancers.  From coming by to visit, to helping to set up birthday parties when you are out of town, to bringing pizza by for supper, they seem to really be so supportive to Jax and and his family. 

As for Claire, she is growing so fast.  Her preschool teacher today said she was like a parrot.  Meaning she repeats EVER.Y.THING you say.  Her teacher said she will be talking then hear an echo behind her and realize it's Claire!  Also, one of my new favorite things is that she is singing "Jesus Loves Me."  I wake up some mornings hearing her sing it on the monitor.  Tonight, she was singing it in the bathtub.  I will try to catch her and video it the best I can.  Melts my heart.  She can also say and recognize all of her ABC's, can spell her name, can count to 14, and is starting to recognize numbers.  She is in love with Disney Princess Ariel.  And sometimes Snow White.  It's really sweet too at night when she gives Trent a good night hug, she leans over and as she is hugging him, she says "aweeeeee".  Guess she's heard that a time or two.

And on one last note, we worked on some random acts of kindness in memory of Claire's heart friend Charlotte over Christmas.  Her mom posted about it on her blog today.  Check it out here:  http://charleysheart.com/2013/01/charleys-rak-music-to-my-ears.html  May it inspire you to do some random acts of kindness for others. 

And....we are excited about a few things coming up for heart awareness month in February and also Congenital Heart Defects Awareness Week in February.  Stay tuned for what Ryland's aunt is working on for Ryland and Claire! 

Love,
The Scott Family

Sunday, January 20, 2013

Jax update 1-20-13


I went up to visit Jax and his family yesterday.  Well, I don't really get to see Jax since he's still in the PICU but you know what I mean.  The doctors had removed the ventilator late Friday night and so that meant he was getting stronger!  Yay!  Amber seemed to feel much better this weekend than last weekend of course.  So we went out and got a really good cheeseburger for lunch since I had been promising to take her out to lunch since this all started.  It was nice to get out and visit.

As you can see from the picture, all he has now is the feeding tube.  I am sure he still has an IV or 2, but they were starting to remove some of those yesterday also.  And he also still has his port.  His WBCs were 600 as of yesterday when I asked Amber.  Jax is still congested so he is staying in PICU so they can do some testing tomorrow to see if they can figure out where and why he is congested.  They are hoping he can move back down to a regular peds room sometime this week if he stays on this track.

I am hoping to get up there again once he gets in a room that I can see him in, and we are planning to take some pictures with my big camera.

As you can see, your prayers are working.  And God is continuing to work His miracles of healing.

On another note, Claire goes to Duke Eye Center this week for her eye check up.  I hope it goes well and that everything looks good!!!  We may have to find that weird video again they had with the 4 stuffed animals over and over again.

Love,
The Scott Family

Thursday, January 17, 2013

Ham Dinner Benefit for Jaxson - Feb 22

Today's update on Jaxson - They tried weaning him off the vent today but Amber said he was still working too hard to breathe on his own.  So they are keeping him on it for a little while longer.  The doctors are still trying to decide whether or not to remove his port as it may be the source of the fevers he is continuing to spike.  Please continue to pray for Jax and his family.  This is just the beginning of his journey.

I also received an email tonight about a benefit ham dinner fundraiser planned for Jaxson.  This is exactly like the one they did for Claire 2 years ago.  I am so happy to be able to actually help and give back this time and to work with the same groups of people and communities that worked so hard for Claire.  So here are the details I have so far:

RHEMS & POLLOCKSVILLE VOLUNTEER FIRE DEPARTMENTS HAM DINNER BENEFIT FOR JAXSON MCLAWHORN

WHEN:  FRIDAY, FEBRUARY 22, 2013
11 AM TO 7 PM
WHERE:  RHEMS VFD MAIN STATION, HIGHWAY 17 SOUTH, NEW BERN
WHAT:  HAM, POTATOES, GREEN BEANS, ROLL, AND DESSERT 
COST:  $7.00 A PLATE

PROCEEDS TO BENEFIT BABY JAXSON MCLAWHORN


JAX IS THE 6 MONTH OLD SON OF JUSTIN AND AMBER MCLAWHORN AND WAS RECENTLY DIAGNOSED WITH LEUKEMIA

TICKETS WILL BE AVAILABLE FROM ALL FIRE/RESCUE MEMBERS OR CALL KAY AT 252-671-6684 OR KEITH AT 252-514-3584

WE WILL DELIVER LUNCH ORDERS OF 10+ PLATES

WALK-INS WELCOME AS LONG AS THE FOOD HOLDS OUT

VOLUNTEERS NEEDED TO DRIVE AND DONATE POUND CAKES


If you have any questions, you can always ask me. If I don't know, I can find out.  If you need tickets, let me know too.  If you want to donate pound cakes and can't make it out that day, let me know and I can arrange to get them from you.  If you are interested in getting a plate, I suggest buying a ticket ahead of time.  From experience with Claire's benefit dinner, the food ran out right before supper time and people who had tickets came first before walk ins.  And even then, some people with tickets who came later in the evening didn't get plates.  So buy tickets ahead of time and be sure to get your plate early!  They try really hard to estimate how much food to prepare based on ticket sales and estimating walk ins.  It's a hard job to figure on walk ins. 

Anyways, as I find out more details, I will post them here!  

Love,
The Scott Family

Tuesday, January 15, 2013

Jaxson update 1-15-13

Jaxson seems to be doing better although he is still having fevers.  The labs still have not come back with any information on the 2nd infection.  The doctors said today they will start weaning him off the vent and the paralytics (may have done this today).  

Amber sent me this picture today and as soon as I saw it I started having flash backs of when Claire looked just like this after both of her surgeries.  Although the situations are different, my heart feels every emotion.  I really have a hard time explaining just how much my heart is aching for them.  

Please continue to pray for Jaxson as they wait for his white blood cells to increase back to 5,000 so they can start chemo treatment #2.  Prayers can work miracles.  



Love,
The Scott Family

Saturday, January 12, 2013

Catching up on Jaxson and Claire


Please continue to pray for Jaxson as today was a rough day for him and his family.  I was supposed to take his mom out to eat for lunch today but got a message early this morning that Jaxson had been moved to the PICU late last night due to his breathing and high blood pressure.  He also has another "bug" in his blood (a strep bug was found last week and now they are suspecting a "gram negative rod"?? bug this time in addition).  So they've added antibiotics, intubated him, done x-rays, added the dreaded replogle (that I despise with a passion), and have ordered an MRI.  

I did go visit his family today and just wanted to sit there and hug all of them, especially Amber.  They're all exhausted and worried.  My heart breaks for Amber as a mother.  And then those pieces break again into smaller pieces for my friend.  This just shouldn't be happening.  

Claire and I drew an orange ribbon (leukemia ribbon) this morning on her easel with some other drawings by Claire.  Then before I knew it, she was down the hall with the red crayon and created her first "wall art" on the wall by the back door.  :)







Lots of people have ordered different orange bracelets as a fundraiser for Jax.  Amber had ordered these herself below and gave me the one off her wrist today.  I think it's pretty indicative of what Jax is doing.  The inside says www.choosehope.com.  I have to think that we are all choosing hope for him.  




Before I went to the hospital, Claire and I had fun outside in the 60 degree weather in January.  She got to wear her extra special shirt from Charlotte's mom.  It's perfect!  She saw it and said she had to buy it since it had a heart on it and also butterflies.  They use the butterfly as a symbol for Charlotte (remember Books for Charley?  That's the Charlotte I'm talking about).  Claire and Charlotte are "heart sisters" even though they never met and even though Charlotte is a heart angel now.  I truly believe she watches over Claire.






Then Claire tried on Daddy's boots.  She was not into it but I thought it was super cute!!  






Please continue the prayers!!!

Love,
The Scott Family

How you can help

If you are asking how you can help the McLawhorn family during this crazy time, they have set up a secure fund through BB&T that you can donate to through a secure website:

Go to www.webpay.com
Click WePay Pages
Click the Donations button (purple with a ribbon in it)
Click the button with the looking glass in it that says See More
Type in Jaxson McLawhorn in the "What are you looking for?" search bar
Then 2 buttons for Jaxson come up.  Click on the 2nd one to the right.

This will bring you to his page and you can donate through it.  Just think that every dollar adds up.  If I donate $10 and you donate $10, that's $20.  That's 1/2 tank of gas.  That's a meal for the whole family.  That's 2 nights at Ronald McDonald House.   That's lots of loads of laundry washed at the laundromat.  That's a lot.

Love,
The Scott Family

Wednesday, January 9, 2013

Jaxson pictures and update




I was finally able to post pictures tonight!  The top one is the one from Saturday that I couldn't post.  The second one I stole from Amber's Facebook page today.  Jax seems to have had a pretty good day.  I think the morning started off slow, but this afternoon Amber says he slept good all day.  I have even seen some pictures of Jax smiling on his Nana's Facebook page today!

Please continue to pray for God's healing on him.  Doctors are great and everything but we all know who is the Great Physician.

If anyone is interested in sending a card to Jaxson or his family, let me know and I can get the address to you!

Love,
The Scott Family

Tuesday, January 8, 2013

Jaxson update

The doctors were planning to move Jaxson to ICU but decided they would let him stay in his own room for now.  His breathing is not good and they think he may have pneumonia.  They've started breathing treatments.  They've also given him more blood, platelets, lasix, and antibiotics today.  Please keep him in your prayers.

Love,
The Scott Family

Saturday, January 5, 2013

Update on Jaxson 1-5-13

Well, I was going to post a really cute picture of Jaxson and his momma but for some reason, blogger is not letting me upload any pictures at the moment.  I will try again later.

We went up to visit Jaxson this morning and his family.  He was adorable as ever, although it broke my heart to see him there knowing what he is facing.  I know he's a tough boy - he comes from good stock.  He will beat this I am sure. 

Jax was allowed to put a sleeper on today and he looked like it made him feel more comfortable.  While I was there, the attending came in and basically told Amber to get comfortable.  They were going to be there a while, a long while.  He had to get blood and TPN last night I believe because all of his levels were way off.  He also still has a fever so they drew blood to test for infection.  I believe the doctor said he did not have infection so the fever must be from the chemo.  So that's a "good" thing. 

Basically they will continue this round of chemo and hope to bring his white blood cells down to nothing.  This will make his immune system very, very weak.  Then they will sit and wait for the white blood cells to start rising again and they will start the next round of chemo.  At least this was my understanding as I was listening.  I also understood the possiblity of a bone marrow transplant could be possible, but I think it is a wait and see type thing.

They were able to give him some lasiks since he had gained 4 pounds of fluid in the past few days.  That helped get half of that off.  His face didn't look as swollen, but his body and legs did.  Hopefully that fluid will fall off soon.  I know it's miserable.

Jax fell asleep while we visited and looked peaceful.  He had one chemo push while we were there also and will have another round of chemo this afternoon. 

It breaks my heart so much for Jaxson and his family.  So many questions of "why?"  His momma even mentioned that it would have been better if the world had ended on the 21st of December like the Mayans thought would happen.  That shows me how much she hurts.  How none of this makes sense. 

Please continue to pray for him.

Love,
The Scott Family

Friday, January 4, 2013

Jax update

Jax had surgery yesterday afternoon to have his port put in and did well.  He had his first chemo treatment last night and his mom said he did well! 

Thanks for the continued prayers!

Love,
The Scott Family

Thursday, January 3, 2013

Begging for prayers for Jaxson







You may remember this little guy from the post about Claire’s birthday party.  He was only about 3 months old here, and is now about 6 months old.  He has been sick for several weeks with a fever ranging from 101.4-102.4 that wouldn’t go away and had been really fussy.  He had a rash on his abdomen and had loss of appetite.  His parents had carried him to the pediatrician several times to no avail.  Finally, last Friday, they drew blood and diagnosed him with mono, double ear infection, and congestion and sent him home with meds.  The meds didn’t seem to help over the weekend and Sunday Jax began to swell.  His parents brought him to the local ER and he was admitted for more testing. 

Monday, a spinal tap was done to do more testing.  He was put on IV fluids and antibiotics and his fever was still not going down.  When I went up to visit him Monday afternoon, his fever was still 100.4 and the nurse gave him more Tylenol.  He looked so pitiful and miserable.  Still, they had no answers.  I racked my brain with his mother looking up symptoms online, trying to think of common sense answers, etc, but nothing made sense.  Tuesday, since Jax’s fever still had not come down, they decided to transfer him to another hospital in the next town over.  It is a university hospital and has a children’s hospital in it.  They ordered ultrasounds, more spinal taps, x-rays, and CT scans that evening. 

Tuesday morning, Amber and I texted back and forth a bit but not as much as usual.  There were no updates on Facebook from her mother in law which seemed a bit strange.  Amber said they really weren’t telling them or giving them any indication of what they were thinking.  But as the morning went on, I felt like it was something bad since there were no updates.  By lunch I was getting really nervous.  Finally, around 2 pm I couldn’t stand it anymore and I texted Amber again to find out any updates.  What she texted me back shocked the life out of me – “He has leukemia.” 

WHAT!?!?!  A 6 month old healthy baby boy goes from sick with mono and double ear infection to LEUKEMIA??!?!  My heart broke for them.  This family has already been through so much.  Their 1st son (who will be 3 next month) was born at Duke with gastroschesis and stayed in the NICU for almost 4 weeks.  Now, this with their newest son?  As Amber had texted me when all of this started, Jax was supposed to be “her healthy baby”.  As parents of children with major health problems, once you have one child with all of those issues, you kind of feel like you’ve had your share.  The next child should be a breeze.  I know they must feel like they are fighting a never ending battle.  That life is just not fair. 

He has been diagnosed with monoblastic leukemia - an acute leukemia.  Jaxson will have surgery today to get his port and will start chemo shortly after that.  According to an email update from his soon-to-be aunt, he will have chemo twice a day for the first 10 days, then once a day for 5 more days, then once a day again for 5 more days.  Then go from there.  They haven’t been told what stage the cancer is in or what the prognosis is the doctor pretty much told them to just take it day by day.  She said in her email they will do another lumbar puncture today (his 4th).  And that hopefully he won’t have bad side effects from the chemo – maybe just hair loss which would be awesome. 

So we are begging for your prayers for little Jaxson and his family.  I will try to keep the blog updated when I know things.  I can only imagine how crazy their lives are right now.  The only thing I can compare it to is the day we went for the fetal echo with Claire thinking nothing was wrong and that we were just going to get an extra glimpse of her through ultrasound.  And then being told an hour later that she had a complex heart defect and would need open heart surgery shortly after being born.  I know that feeling all too well and imagine that’s just about how they feel.  Your world can change in seconds. 

Please pray for Jaxson and the entire McLawhorn family.  We know that many prayer warriors read Claire’s blog and we also know the power of prayer. 

Thanks in advance!

Love,
The Scott Family

Tuesday, January 1, 2013

Happy New Year 2013


Happy New Year!!!  Claire was no into wearing the hat so this is the best we could do.  I pray this year is full of God's blessings, hope, love, happiness, health, and so many other things. 

Love,
The Scott Family

PS - Please say a prayer (or 2 or 3) for little Jaxson.  He is the 6 month old son of friends of ours who has been very sick for 2 weeks, has been in the hospital since Sunday, and is now moving to another hospital today because doctors cannot figure out what is going on with him.