Carlie Grace Gray

UPDATE

2006-06-09T20:47:00.000-04:00

We've been home now for nearly 6 months and this little girl has only had one tiny little fever that lasted a few hours. She is absolutely doing AWESOME! She has more energy in her pinky toe than I've got all week long, she goes and goes and goes. She loves to dig, swing, play in the pool and do all the things a normal 16 month loves to do. We've been teaching her sign (she hears fine when she wants to) and we are amazed at how quickly she'll pick things up. She sings bird, butterfly, banana, dance, apple, cracker, daddy, mommy, thank you, please, I love you, spider, bear, water and probably more that she's trying to teach us. So there's a snapshot of where's she's at and how she's caught right back up.

We still go to Shands once a month for check ups and medicines. A month and a half ago she had her central line changed to a port that's below the skin which has made her life a lot easier. She's down to three meds twice a day and she takes them like they're candy.

Carlie is a testament to the power of prayer. She was healed and so many people prayed for her and we are forever in your debt. Thank you

Carlie's home for good

2005-12-26T22:32:00.000-05:00

Carlie is doing awesome! She's eating good, sleeping is . . . getting better and most of all her counts are near perfect. She truly has been healed. Not much more I can add to that but here are some Thanksgiving and Christmas pictures.

I'm 10 months old today!

2005-11-20T09:48:00.000-05:00

89 days at Shands and only one more to go! Nov 21, 2005 we pack up and move home. We are only 62 days outside of Carlie's transplant and the doctors can't believe she's already well enough to leave. Her eating and sleeping still are not the best but we know that will come and it's definitely improved. She still has quite a bit of medications to take each day but those will be tapering off over the next few months. We have clinic once a week now just to check her labs and medication levels and hopefully that will tapering soon as well. All in all I think we have our little girl back - Praise God!

This bottom picture is Tyler Youtz and his mom Angela and Sarah. Tyler is quite the fighter and has been fighting neuroblastoma since January 2005. He's getting his bone marrow transplant right now and is going to have some rough days coming up. Please pray for him and his family.

We met Tyler and his family at Arnold Palmer back several months ago. They were in the room next to us and could hear Carlie at night when she would wake up and cry or fuss and in all his pain and all he was going through he would tell his mom he wanted to pray for Carlie and so they would. He's a special guy. He also has a blog - http://tyoutz.blogspot.com

Day 68 - Shands ( Day + 41 )

2005-10-30T08:31:00.000-05:00

We are officially out of the hospital! We moved into the transplant housing a few days ago and it seems like since then Carlie has improved by leaps and bounds. She is eating great and no longer requiring daily platelet transfusions. She's even started saying Da Da again (sorry Mommy but I know Ma Ma will be soon). We are told that we may be able to come home by Christmas.

Saturday Oct 29th we held the Carlie Gray Benefit Golf tournament and what an incredible day. Everyone was so kind and giving. We just want to thank everyone who played, helped out, showed up and contributed. WE ARE ETERNALLY GRATEFUL.

Here are some recent pictures of Carlie and the golf tournament.

Day 53 - Shands ( Day + 26 )

2005-10-15T09:12:00.000-04:00

Our counts are looking very good. Growing white blood cells and all the immune system stuff. We found out this week that Carlie has 100% donor cells -which means HLH is gone! Now she's just got to recover from those nasty treatments.

We should be moving out of the hospital this week and in to transplant housing beside Shands. The only thing holding us is she forgot how to eat so she had to get a feeding tube through her nose and try to learn to eat again. We're halfway home though and can see a light at the end of the tunnel.

Day 42 - Shands ( Day + 15)

2005-10-04T22:12:00.000-04:00

Good News Good News Good News

Sorry for the long time between posts but this little girl has been on a "rollercoaster". Shortly after our last post Carlie was acting like her old self. Laughing, playing just being that happy child she always was. Then around day + 5 she started going down hill. Mouth and throat sores got really bad, fevers began spiking, her breathing became very labored and her heart rate shot up around 200. Because of all this we were moved back up to the tenth floor (PICU) so until they could stabilize her respitory distress. So day + 5 through day + 13 could be summed up as miserable. Lots of pain meds, sometimes to no avail. Day+ 13 we took her off the pain meds and she's able to eat small amounts, only problem is because of the mucositosis she's producing tons of mucus which she cant cough up and spit out. So instead she chokes on and it then vomits, this happens often right now and will last for another week or so. That's the bad news.

On day + 9 Carlie showed very small signs of WBC (white blood cells) and neutrophils (?). We were told don't get excited. Day + 10 her counts doubled so twelve hours later we drew another set of labs and her counts had tripled. We were originally told to expect on WBC growth for 30 days. All the docs associated with her case are convinced she is showing all the signs how a successful transplant.

We know God's hand is on her and we believe that's because of the faith and prayers of everyone. She still has tough times ahead. We're battling vomiting right now and trying to recover from some nasty chemo but they say with each new day she'll improve. And if her trend continues we may be moved to the hospital housing in a week. That's what we're praying for.

As a side note there is a volleyball tournament benefiting Carlie this weekend Sat. 8th at hickory point. All levels of play welcome or just come to see some friends. For more info contact Jon -352 636 2342. If v-ball is not your thing there will be a golf tournament Sat. the 29th at Harbor Hills CC for more info contact Gary - 352 408 7899

Day 31 - Shands ( T + 4 )

2005-09-24T14:33:00.000-04:00

OK finally able to get to a computer so got some catching up to do. Four days prior to transplant Carlie had to be moved back up to the ped ICU to monitor her liver and other vitals more closely. Because of the busulfin (chemo) her liver really took a beating. Her oxygen intake dwindled and she was retching quite often. Also while in the PICU she started GI bleeding so she wasn't allowed to eat for almost a week. With all that she was understandably miserable. Because of her pain level she was sedated constantly for nearly a week. That's a recap of the bad stuff.

Transplant day went really good. She got her cells around ten in the morning and slept the rest of the day. Since the transplant her liver has steadily gotten better. On day + 2 she was taken off the O2 and on day + 3 she got to go back to the BMTU (transplant floor).

Yesterday (day + 3) she had a tiny reaction to one of her medications. Not going to attempt to spell it but its a steroid and it caused her to have some tremors. Also the dreaded mouth and throat sores are now showing up.

On a positive note Sarah and I saw Carlie smile and even got a little chuckle out of her today. It's been weeks since she's cracked a smile and even longer since she's felt like playing. I've never seen a prettier smile. She reminded me that God's in control and that she'll be whole again one day soon.

Day 22 Shands ( T - 5 Days )

2005-09-15T22:36:00.000-04:00

Well looks like the tough days have begun for Carlie. Fevers started up two nights ago and haven't let up yet. With that she's having trouble keeping anything down, pretty much all day today everthing she ate came right back up. Most likely this is a side effect of the Busulfan (strong chemo) which she has recieved 16 doses in the past four days. She was given a dose every six hours for four straight days. To help her calm down and to tolerate all this she has orders written for morphine every four hours and this has really really helped to calm and give her some comfort. The doctor reassured us they would never over do the amount she would recieve so we feel good that the morphine will help her. Despite the high fevers, nueasea and fussiness we're told she is doing really well, actually bresponding much better to the Busulfan than most patients.

This takes us through day four or T - 5 (count down to transplant).
On T - 4 (tomorrow) she'll be getting Etoposide or vp16 the easier on her chemo, this is the chemo she's been getting all along and has responded very well to. Hopefully it will give her a break and some rest.

T - 3, 2 and 1 she get what's called ATG (rabbit antithymocyte globulin). ATG is an antibody produced in rabbits when human T cells are injected into their blood stream they make antibodies that fight and kill the cells. That is then harvested and used to kill off Carlie's cells. We're told she feel much like she has a bad flu.

T - 0 Transplant, Tuesday September 20 which happens to be when she turns 8 months old.

We both know she is in the Almighty's hand and to that there's no greater hope. We love you all and thank you dearly for your prayers and support.

May God Bless You All

Day 19 - Shands ( T - 8 days )

2005-09-12T19:54:00.000-04:00

The first day of transplant prep is under our belt and Carlie is doing pretty good. She received 4 doses of chemo today, one every six hours. She seems to be handling that pretty well, but for some reason her appetite is quite furious. She's eating every single hour to hour and a half. Yes even at night. So the pour child is not sleeping very much. We've requested adavan which is supposed to help her calm down and sleep so we're praying she can have a restful nights sleep tonight.

I have a friend who has a weekly comic that is updated on Fridays. If you enjoy a good poke at car salesman and their industry (and I know we all do!) please check out his great sense of humor at http://onthelot.blogspot.com. I promise you'll like it!

Day 16 - Shands

2005-09-09T22:37:00.000-04:00

Carlie has been moved to the fourth floor which is the transplant floor. She under went surgery today for two reasons - one they added another central line but this new one is a double and second they harvested bone marrow in case the transplant is rejected. For such a rough day on a 7 mo old she's doing pretty good.

Monday starts her bad chemo and that starts an 8 day count down to transplant. This will be extremely hard on her. This is when she loses her hair, has nausea, and gets sores in her mouth and throat.

After transplant it will take at least two weeks for her to start growing new cells, if successful. They will keep her for around six weeks in the hospital then once she's released she must stay near shands for three months. But they do provide the housing.

She is such a blessing from God and I know God hears everyone's prays and will answer. Thank you so very very much for the love and support!

2005-09-03T10:17:00.000-04:00

Just dreaming of home

2005-09-03T10:10:00.000-04:00

I Love Mommy!

2005-09-03T10:08:00.000-04:00

Lots of cords

2005-09-03T10:07:00.000-04:00

MMMM squash

2005-09-03T10:00:00.000-04:00

Life at Shands

Day 7 - Shands

2005-09-01T21:27:00.000-04:00

GREAT NEWS: a cord blood donor has been found! We were informed multiple matches were found and now its just a matter of selecting the best of the matches. Originally we were told the whole transplant process could take anywhere from, at the very very best 2-3 weeks to 6 months. Well God is good! Right now the plan is, in 10 days we start her aggressive chemo (the bad stuff) that will start a 6 day count down to transplant. So in two weeks we maybe getting a new immune system. The chemo is will be so very ####### her and she's going to be very sick until her her cells begin to grow. If successful the cells usually take three or four weeks after transplant to grow. So a specific prayer would be comfort for her while killing her immune system and that the donor T-cells (bone marrow) will grow and start a new healthy immune system for her.

Nothing new to report on her vitals. She's up and down emotionally but is eating better. We need to just pray she stays stable until transplant. Thank You!

Day 5 - Shands

2005-08-30T18:45:00.000-04:00

Sorry for the non updates, but here's what's been going on. Day three was not too eventful, her vitals were bad (pulse over 200, respirations over 100) and she was very uncomfortable and fussy. She spiked a high fever so they started her on some new antibiotics. Now she's taking three different antibiotics, tylenol, benadryl, cyclospooron, dexamethezone and zantac. Some twice a day .. . .That's a lot. They took some ekg tests and they came back completely normal.

She stayed pretty fussy through day four so the docs decided to give her chemotherapy treatments into her spinal fluid. That's because she had a high amount of white blood cells in her fluid which cause neurological problems. Ever since the treatment her vitals have been much closer to normal. She also going to be getting her old chemo twice a week starting tomorrow.

Still moving toward transplant and we should know about a donor by the end of the week. So please pray for a miracle healing. Thank you all for the love and care you've shown our angel and family

Day 2 - Shands

2005-08-27T18:48:00.000-04:00

Carlie's Grammama ( Loretta) stayed with Carlie last night so that Sarah and I could sleep at a nearby hotel. She did great waking three times only to be fed and have a diaper change. Her day today was also good. She started out with a low grade fever, around 101 or so and after some tylenol she's been really cool today. She received red blood cells (blood) today because her hemoglobin was so low and her color is great and I think it helps her not to be so tried and irritable. Her platelet count is border line on needing more so they're looking at that in her labs for tomorrow.

We met the doctor who is heading the team and we really like him, don't remember his name but I'll get and post it next time. He told us she needs her transplant soon. They found a lot of white blood cells in her spinal fluid which indicates the current treatments really aren't keeping her stable. The longer we wait for transplant the more the chance for permanent neurological problems. But he's very confident we can beat this thing.

So please pray that we can find a cord blood donor. Thank You!

ps Sarah is making me share that we were HLA typed to see if we may be suitable donors for Carlie. Very simple - they just draw a TINY amount of blood, nothing to it . . right. Yeah, I passed out :( (didn't even look either)

Day one - Shands

2005-08-26T17:51:00.000-04:00

We arrived last night around 9:00pm to Shands and are in the ICU unit, room 423 tenth floor. The doctor and nursing team are outstanding. We're so impressed with how caring and thoughtful everyone is, both here and Palmer. They got us settled in, got her base line vitals, and finally got her to sleep a little after midnight. She then sleep until 6:00am, woke up to take 1/2 an oz of formula then right back to sleep till 8:30am. We weren't allowed to feed her after her morning bottle (6am) because she received a MRI, CT scan, spinal tap and bone marrow biopsy all while under the same anesthetics. So boy was she HAPPY when she finally got to eat around 5:00pm. Everything went great she's resting in Mom's arms now and nothing else is scheduled for the time being.

Sarah and I would like to THANK and say just how blown away we are from the incredible response from friends, family, church family, and strangers. Absolutely overwhelmed and humbling. So from the bottom of our hearts - Thank You

Moving to Shands Hospital in Gainesville

2005-08-25T13:49:00.000-04:00

The doctors have now determined the HLH is most likely linked to a gene, which means she was born with HLH. The only way known to rid the body of HLH is through a bone marrow transplant. So we are moving from Arnold Palmer hospital to Shands in Gainesville and will be there through the tranplant and recovery.

When we arrive I'm told she will be put in ICU because of the new medication she will be starting. Not sure exactly what the med is.

Her current status is: -she's tired a lot

-constant fever

-not really interested in do anything.

The next update will be from Shands. Please pray for rest and healing for her. Thank you

2005-08-24T17:17:00.000-04:00

2005-08-24T16:35:00.000-04:00

Sarah (Mom) and Carlie