Anthony's Journey

CaringBridge / anthonycox1 / Welcome

2011-06-14T17:29:00.000-07:00

CaringBridge / anthonycox1 / Welcome

6 months

2011-03-28T18:56:00.000-07:00

CaringBridge / anthonycox1 / Welcome

2011-03-04T15:53:00.000-08:00

CaringBridge / anthonycox1 / Welcome

2011-02-27T20:11:00.000-08:00

CaringBridge / anthonycox1 / Welcome

Anthony at OneTrueMedia.com

2011-02-20T10:01:00.001-08:00

Happy 3rd Birthday Sweet Anthony!!! THere isn't a day that doesn't go by that I dont think of you and miss you so much..You have taught me how to love and the courage that you had in your 2.5 years on this Earth.
I LOVE YOU!!!
Mommy

Make video montages at www.OneTrueMedia.com

CaringBridge / anthonycox1 / Welcome

2011-02-04T17:43:00.000-08:00

CaringBridge / anthonycox1 / Welcome

I updated Anthony's caringbridge

2010-12-29T19:04:00.000-08:00

Anthony right after we took him off the venilator Me,Lindsay and Grandma Jackson

This is one of the last pictures we have of all 3 boys..Sept 2010

CaringBridge / anthonycox1 / Welcome

Anthony's Make A Wish

2010-12-14T16:07:00.001-08:00

A Big Thank you to ELMO for all that he donated to make Anthony's wish come True!!!

2010-12-14T16:04:00.000-08:00

CaringBridge / anthonycox1 / Welcome

2010-12-07T13:21:00.000-08:00

CaringBridge / anthonycox1 / Welcome

2010-10-23T18:40:00.000-07:00

I just wanted to check in and let you all know we are all doing ok. Life around our house is quiet with our our sweet baby Anthony
.Our days are filled with sweet memories of him and wishing that he was still here.John is back to work and the boys are happy to be back to school,
Lindsay is back to school also.
We have decided to still be a foster family for our agency.We will find out on Monday if we will be getting a sweet 3 week old.
I can say that I honestly really miss being at the hospital and miss our nurses and doctors.
Anthony's Make A Wish is still going to happen and we heard that there is a big meeting about how and when this might happen sometime next week.I will let you all know and of course we will be there.We want to honor Anthony and want to make sure his wish is the best that it can be.
Some of you have asked who and where you can donate to and in Anthony's honor.Well we would be honored if you would donate to www.bigdeepbreath.org .This is a brand new organization that wants to help the families of Childrens hospital with basic and living expenses while living at Childrens Hospital and is in honor of Anthony's friend Ashley Avens who lost her battle with AML in Aug 14th of this year.It is just had its first event today.You can learn more about Big Deep Breath.org on their website..
We hope to be able to help and get more involved in the near future.
So as we have done alot of lately please all Take a Big Deep Breath and have a super weekend.
Thank you all who keep praying for us.
We still need them.
Rhonda

2010-09-29T15:49:00.000-07:00

Anthony Celebration of Life
Highline Christian Church-1:00PM
14859 1st Ave S
Burien Wa 98168
206-243-4343

2010-09-29T03:31:00.001-07:00

Anthony earned his angel wings at 12:56 am this morning.Fly High sweet boy..Mommy will love you forever.

2010-09-28T12:18:00.000-07:00

Anthony is still fighting...He is just hanging on and I think it is because all these kids know what to do is fight and it is hard to tell them not to fight and now we are telling him it's ok to stop fighting.He looks very peaceful and isn't in any pain.
This is very hard on our family as we sit and wait on him.
Please pray that he will pass.I am trying to update his Caringbridge.org site- Anthonycox1 , As much as possible.
Please pray that he passes quickly and no suffering.
Thank you for praying for our sweet boy the past 2 years.
People have asked what we are needing and truely we are in need of the funeral cost and just expenses as John isn't working now until he is ready for work.
Our Address is 8405 Seward Park Ave South Seattle Wa 98118
God Bless,
Rhonda

2010-09-23T00:08:00.000-07:00

Anthony had a MRI today and it showed significant brain loss and his kidneys aren't recovering so he will be taken off the Breathing machine sometime tomorrow.Please keep praying for our family as we let our son go be in no more pain.I don't even know how we are going to manage the next few days.
Rhonda

2010-09-21T07:18:00.000-07:00

Please go to Anthony's Caringbridge for an update.
It is easier to have everyone go to one site.
AnthonyCox1

Rhonda

2010-09-20T00:11:00.001-07:00

Anthony is very critical...Please read his
Caringbridge.org
Anthonycox1-Name

2010-09-15T14:08:00.001-07:00

Anthony had clinic today and is doing so well he will be headed back to his regular Hem/Oc Doctors the beginning of October.
He is loving not having a PICC Line in and loves to splash and take baths with his big brothers.
We are even going to go to my cousins wedding this Friday
Please pray that his GVHD doesn't flair as he will be getting weaned off some of his Steroids
Please pray for sleep for Anthony.He has been on this high dose since Early July and he isn't able to sleep very well and it is a real struggle.
Rhonda

2010-09-10T17:32:00.000-07:00

Anthony is doing real good..
So good he got his PIV Line out today.it wasn't needed for anything so it was a bigger risk having it in as he seems to get Blood Infections so easily.
We ask that you pray for his GVHD that it won't flair.
Anthony and our family is doing the Light the Nights to fight Cancer on September 25th.
We have seen to many kids suffer from Cancer and would like to help anyway we can.If you would like to donate for Anthony's here is the page.http://pages.lightthenight.org/wa/SeattleL10/JamesFamily
Rhonda

2010-09-07T20:58:00.000-07:00

Anthony had clinic today and his electrolytes and everything is doing good.
We are watching his stooling as we aren't sure if its from the antibiotic that he is on or if his gut is having some GVHD and flairing.
We are going to once a week clinic and blood draws.Anthony has 2 more days of his antifungal and are waiting to hear what king of antifungal he will go on after this we are hoping that it won't be anything IV so his line can come out.
His last day for the antibiotic is on Thursday.
Please pray for no Blood infections and for this line to be removed soon.
Pray for his stooling that it is just because of the antibiotics.
Pray that Anthony will go to sleep smoothly and the last couple of nights it has been a real struggle and fight..he is tired but just doesn't want his head to hit that pillow and we are 2 tired parents.
Rhonda

2010-09-03T12:37:00.000-07:00

Anthony has been adjusting to being home and is doing good.
We had clinic today and it was pretty stressful since his line you can't get his blood draws from so they still have to poke him and he isn't liking it and plus from all his lab draws earlier in the year he isn't the easiest to get blood from..
Pray we can get this line out next week and go to clinic only once a week.
Pray his GVHD stay's stable.
Rhonda

2010-08-27T18:49:00.000-07:00

Anthony has a New PICC Line,It was placed in his lower right arm..Which is very very scary place but we will hope and Pray he won't need it for very long time.
He Got his fondiparinox and some lasix yesterday as the surgeon wasn't going into any major veins and he slept last night and he was a totally different baby today.
He was a little grumpy from surgery but other than that he was pretty happy.
We are still waiting to see if anything grows on the tip of his old line and if it doesn't than we should be able to go home early next week
.Happy +101 day Post transplant to our friend Louisa...She is doing great and is enjoying the rest of her summer before she gets to start school soon.
Hope you all have a super weekend.
God Bless
Rhonda

2010-08-26T17:04:00.001-07:00

Anthony has had a very hard week ...
He was started on the Argatroban on Tuesday and it hasn't helped his SVC or clots at all.
He hasn't slept very much in the last 2 days.
He is very very irritable and so we haven't slept when we are up with him.
His line has been removed and he should and we pray that he will get a PICC line in tomorrow sometime.
Please pray for his irritabilty and that he can sleep in his bed.Pray that the doctors can get the PICC line in tomorrow.
Pray that he will just start feeling better very soon.
Rhonda

2010-08-24T16:26:00.001-07:00

Anthony's surgery is at 8:30 AM PST on Wednesday
.Please pray for a safe removal of his line and that there isn't any problems or excessive bleeding...
Rhonda

2010-08-24T15:42:00.000-07:00

Anthony started the new anticoagulant and didn't have to be moved to ICU.
He just has 1on1 nursing.
He will have his line removed tomorrow sometime.
Please pray that the peripheral lines will last and not blow..
He doesn't have alot of veins from being poked for 2 months.
Pray he can sleep these lines hurt him and doesn't like to sleep.
Pray that he will come out of surgery ok tomorrow.
Pray for not alot of bleeding.
Rhonda

2010-08-23T22:15:00.000-07:00

Anthony's line cracked and so now it must be removed.So tomorrow .
Anthony will stop the fondiparinox and be moved up to ICU to start Argatroban another blood thinner but shorter acting one.
He will have his line removed Wednesday and a ultersound to see if it is possible to have a line placed on Friday.
He will remain on the argatroban until Friday when the line will be placed.
This is very scary for us and the doctors and he will be closely monitored.
Please pray that the line can be removed safely and they can get another line in on Friday.
Pray for peace for our family.
I will update as I am able to.
Rhonda

2010-08-23T15:25:00.000-07:00

Anthony line has cracked so he is being taken off his anticoagulants and will have it removed on Thursday.
Please pray that the collateral veins don't fill up with clots while he is off his medicine.The doctors will be keeping a very close eye on him.
Pray that they can somehow get a line in him even if its temporary so that we don't have to sit in the hospital for the next 30 days.
Rhonda

2010-08-23T12:15:00.000-07:00

Anthony still has yeast in his one lumen in his line.
If today's is still positive they want to take the line out but they would have to stop his fondiparinox and aspirin and that isn't a safe thing to do for Anthony they are the only thing that is keeping Anthony alive and keeping the new clots free of clots.
Please pray that today's cultures come up negative so that the line doesn't have to be removed.
Anthony is in high spirits and pray he stays that way.Lindsay is up with Anthony until Wednesday.
Pray that he sleeps.
Rhonda

2010-08-22T14:38:00.000-07:00

Anthony has a yeast infection in his blood.So he is being put on antifungal medicine.He will have to stay in the hospital at least 48 hours from his last fever.
We are hoping he can go home on the antifungal medicine.
Please pray that this isn't in his line because it is pretty risky for Anthony to have any surgery because of his anti coagulant drugs and he would have to off them for 2 weeks and that is risky for Anthony to be off those medicines because of the clotting issue.
Pray he starts feeling better soon.
Rhonda

2010-08-21T17:58:00.001-07:00

We have had a good week..Anthony got a new big brother Christopher Jordan yesterday and was doing good until this morning when he woke up with a 101.0 temp.
So we took him in and John is up with him.
They have done blood cultures and if this is a blood infection it will be his 20th one in his short 2.5 years.
Please pray that Anthony will start feeling better soon.If this is a blood infection that he can get on the right antibiotics soon.
Pray for us as a family we were really liking being home for the past 9 days.

Rhonda

2010-08-15T14:01:00.000-07:00

Anthony is adjusting to being home and doing good.
It is really hot in Seattle so we have all shades closed and trying to keep the house cool.He will have clinic 2x's a week for awhile.
He has 5 more days of antibiotic.
Please pray for sleep for him,the heat isn't helping
.Pray for Anthony to adjust to being home and keep him healthy after the antibiotics.
Our Friend Ashley earned her angel Wings yesterday.This is very hard for her family and so I ask that you please pray for her family.She fought and got to do alot of the things the doctors told her 8 months ago she wouldn't be able to do.
Pray for Charlie as he has alot of questions about cancer and death.
Pray we can give him the right answers for him.
Rhonda

2010-08-13T12:32:00.001-07:00

Anthony is home and it is great to all be home.
It is very busy busy around my house.
Anthony is doing good and adjusting to being home .Rhonda

Home Sweet Home

2010-08-10T11:06:00.000-07:00

We are going home tomorrow with Anthony!!!
Charlie and I had about a 12 hour flu and are feeling good.
Will you please pray for a couple of our friends from SCCA.
Joel who had his transplant almost 2 years ago is having alot of GVHD issues ,
Louisa had a Bone Marrow aspiration and something showed up that is abnormal so she is having another one next week
Lastly for our sweet Ashley she is fighting so hard and isn't giving up to Leukemia .Will you please pray for her and her family right now?
We have become family with alot of the family's and we see them hurting it hurts and we ask the same questions WHY.
Pray for the transition home..It is going to be alot of work but we will be home and that is all that matters.
Rhonda

2010-08-09T10:35:00.000-07:00

Anthony is doing great
But our son charlie and I have the flu and so Anthony is now stuck in the hospital until we don't know because they only do clinic Mon-Thurs and he has to go the day after he is discharged.
So we are praying this is some 24 hour bug and we can come home Wednesday and bleach our toys/Do all bedding tomorrow and so.
Anthony is on so many immunosuppressent that it would be not a good thing to bring him to a sick house.
Please pray that we start feeling better and that Christopher doesn't get this or Anthony will be in until next Monday.
Rhonda

The last 6 weeks..... as seen by Lindsay

2010-08-08T22:43:00.000-07:00

Wow!! what a past month and a half it has been! I started this summer off taking 12 credits at my college everything was going great! I was going to accomplish my summer goal of completing my greatest fear.... Statistics... everything started out fantastic!!! In fact I loved that class, my other class was also amazing and I loved it to be honest my schedule for summer quarter could not been any better... it is when everything is going great and you don't listen to that small still voice telling you not to take summer classes, but I did it anyways

About a week after I started summer classes I came home from school and sat on the couch, within five minutes my father called on the phone stating that my mom and I needed to arrive at the hospital because we needed to make some decisions about Anthony's... let me tell you we stormed out the door crying and driving to the hospital..it felt like 20 hours to drive 9 miles to Seattle Children's hospital. My dad sounded scared but would not tell us what was happening...

By this point Anthony had been in the Intensive care unit for a month due to the puffing up in his face from the blood clots in his chest, so much that we almost lost Anthony if had not been in-tubated when he had then within 30 minutes he would of passed, test and ultrasounds showed that Anthony's blood veins where clotted off but they had some medicines that the doctors could try but they where not without risk... the first medicine is known as TPA, which it it like roto rooter for your blood vessels cleaning and breaking down the clots. The tpa worked in his legs and some with helping to allow a small amount of blood flow to go through the blood clots. Anthony had just got off of his second round of TPA and we where under the impression that morning that if the TPA didn't work then we where faced with having to sign off on the surgery that Anthony would have a 50/50 chance of making but most likely he would pass on the table, we knew this before showing up to the hospital but the reality of how sick he was would sink in.

when we arrived at the hospital my father pulled out a picture that showed Anthony's veins and the blood clots where still completely blocked the flow of blood and the collateral veins that where forming but then closing off..what we were looking at was a picture showing us that Anthony would not be able to sustain or live life without a miracle..that night was a hard and sad night... our pastors, friend Becky, and aunt and Uncle came to visit Anthony.. we prayed over his body laying our hands on him asking God for our miracle... Then the Doctor came and my parents have known her since we first got Anthony placed into our care with a Tear in her eye she said that she did not think that Anthony would make it, that she had been wrong before but she was pretty sure he was going to pass on... we cried and cried and prayed...The Amazing thing about God is that in that room I felt a peace and presence of God that I have never felt before, he was there in that room holding my family up as we wept and cried over sweet Anthony, who was fighting and not wanting to stay sedated, in fact he woke up saying mama and Elmo. My mom wanted to leave the ICU unit and visit the Cancer care unit to see if the nurses that have taken care of Anthony where there, there are a few nurse that have taken care of him since day one of him being diagnosed with HLH, it is also rare that all of them are working on the same shift but when we walked in within minutes all those nurses that we have grown to love where surrounding us and hugging us the tears that they let fall down their face where healing and touching to us. The tears that the Doctors and hospital staff cried showed us that Anthony was more than a patient to them but rather the wanted the same as we did, For Anthony to be able to live a life! to be able to walk out of the hospital and go home... In the past two year after all the times Anthony had been sick and the amazing strength that he has shown, these blood clots where going to take him? it was unfair....

The team set up another care meeting for 3pm the following day. My mom and I came home and tried to rest but we where at the hospital early that morning with Starbucks coffee in hand. It was on that Tuesday that I realized there was no way I could continue with summer quarter and prayed and prayed about what I should do and without a doubt in my mind did I end up dropping summer quarter, I had a letter from the Anthony's Social worker and Doctor. One of the girls on the Cancer floor named Louisa whom my mom and Anthony have gotten to know on the floor and loves all the little baby's. my mom wanted Louisa to be able to say goodbye to Anthony so we snuck her in the back to say goodbye, when I saw her cry and weep over my brother I saw a bond and love between them that still makes me cry, I will never forget sweet Louisa in that moment that was so tender, as she said goodbye I stayed with Anthony and just held his hand, crying out to God "WHY"... all I could do was look at his frail body and ask "WHY?" he has overcome transplant and was doing to sooooo well with all his transplant...it is and was soo unfair.... during rounds that day my parents made it clear to the doctors that they where not wanting to give up on Anthony and did not want them to either... we wanted to give Anthony any fighting chance..the tears of my father touched everyone there.. the Tears of my dad who for so long held up my mom as she cried touched me... the Tears of my dad where a fortress and showed everyone there we where not wanting to give up.

The day went on in a fog, we asked for Anthony's Favorite nurse to be at the care givers meeting and she was given a no pay...The love that Amy has for Anthony is beyond words and the love we have for her is beyond word... In so many ways she has become more that a nurse she has become a part of our family, a rock and a strong voice in advocating for Anthony's health. Another person that we requested was Dr, Anne who has also become a strong voice and has known Anthony since day one.. the commitment that she has to Anthony shows, she came in on her day off. As the care givers meeting came about we had no idea what was going to be said. when we first arrived there was a tension and heart ache that surrounded the table we all went around and stated who we where and all the different Doctors that stated that they could not do the surgery without him most likely passing on.

Then our hope came Dr, Mathews the top Hematologist at Children's said that she had been in contact with a colleague in Denver Colorado and together they created a care plan, the plan would be to give Anthony a drug called Fondaparinux that would be given by a shot every day and every other day he would be given some aspirin to thin his blood. The hopes in this treatment is to allow his collateral blood veins to form and mature without closing off. although little is known about this treatment Dr, Mathews colleague suggested this because of her work with other children who had clotting issue and it had worked. This treatment is not without risk.

On Anthony's Caring bridge I posted a post about the day and I ended it with this:

"God is still in the business of making miracles and although his road is long from over the hope we have for Anthony is enough to keep fighting."

In six weeks Anthony has made leaps and bound in his progress! he left the ICU within days of being extubated, he was talking, laughing and blowing kisses.. the strength and courage that Anthony has is amazing! To be able to hold him and know that we are on our last chance but yet so far we believe that the medicines it working... and the best news is.....

After 138 days in the hospital Anthony is coming home tomorrow!!

It is true, God is still in the business of miracle making

He is still here to prove it.

Home Sweet Home We hope

2010-08-08T20:13:00.000-07:00

Anthony is doing really good that we are scheduled to go home tomorrow...
Tonight I was doing laundry and for the first time in over 138 days I am putting Sweet Anthony's clothes in his dresser.
It is the little things that are getting to me...
A month ago we were told our angel boy wasn't going to be able to come home and he wasn't going to live.
Tonight we are looking forward to bringing him home and sleeping at home tomorrow night.
Please pray that we will adjust to all of us being home.
Pray that Anthony will some how stop banging his head when he is frustrated.
Pray for us as we will be up about every 2 hours in the night doing his medicines.
Rhonda

2010-08-06T10:48:00.000-07:00

Anthony has had no fevers since yesterday morning and seems to be feeling better.We won't know the sensitivity's to this bug for another couple of days.His blood cultures from yesterday are still negative so that is a very good sign that he is on at least the right antibiotics for right now.
They are going to restart his feeds so hopefully he will be able to handle those.
Pray he can handle his feeds back on and not alot of stooling.
Pray that he just starts to keep feeling better and better.
Rhonda

2010-08-05T15:09:00.001-07:00

Anthony has another blood infection and is really sick.
Please pray for him as he really sick and still having fevers.
We will not be able to get out until he has 3 negative cultures and 14 days after that so please pray that is today or tomorrow.
Pray he will get to go to his big brother's adoption hearing on August 20th.
Rhonda

2010-08-03T11:20:00.000-07:00

Anthony is loving going home and being there and playing with his brothers that the doctors are going to release him on Monday if all goes well.Yes I am nervous and NOT getting excited because I will believe it when we are signing the release from Hospital paperwork....
He is being weaned off his IV dilaudid and will be on oral on Thursday.Please pray that he will be able to tolerate this and won't cause too many withdrawal symptoms.
Pray that after the antibiotic is over that he won't get another line infection.He will be on an antibiotic to try and keep this from happening but not the stronger one he was on before he came here over 4 months ago.
Pray that when he gets frustrated that he won't bang his head and we can figure out a way to help him when he is frustrated and mad.
We are excited to say that Anthony will get to introduce to you all hopefully later this month his NEW official Big Brother Christopher Jordan.This is a amazing and God thing that we get to adopt him and we are excited for Christopher to become an official Son/Brother very soon.
Rhonda

2010-08-01T15:25:00.000-07:00

Anthony is doing pretty good.We have had 4 hour passes and have brought him home this weekend.
He has C-Diff and that could of been what was causing all his runny stools and throwing up a week ago.
So he is basicly in lock down in his room and can't even go out on walks around the floor.So getting to come home is a very good thing.
The plan to get to go home is he finishes his antibiotic next saturday and then we should be released on Monday August 8th.
We hope and pray that time it works out.
Please pray that we get to bring our son home on August 8th.That he will be able to tolerate the change from iv dilaudid to oral this week.
That he will just start feeling so much better.
Rhonda

2010-07-29T12:12:00.000-07:00

Anthony is still not sleeping well but is happy during the day time .
He cut his lip yesterday and bled for about 5 hours and so the dentist came up and gave him something to clot it.
Today we are going to try and put him on feeds at 5 mls an hour...
We are hoping this rest on his gut was enough.
Please pray that he can sleep at night.
Pray he can tolerate his feeds.
Rhonda

2010-07-27T13:20:00.000-07:00

Anthony hasn't slept a whole lot since he is on the methylpred and is real puffy from it.
Since his stooling has slowed down they are going to take him off the methylpred and put him back on his oral dose of steroids.So we are hoping to have our happy and sleepy baby back soon.
He was put on Budesenide and Beclomethosone to help with the GVHD.
His levels for his fondiparinox is stable and we will get another level tomorrow.
Please pray that Anthony will sleep tonight for Lindsay and that they both will get the rest they need.
Pray that he will get LESS puffy,we are hoping this is from the steroids and nothing else.
Pray that his GVHD will settle down and we can get him back on his feeds and get to goal so that we can maybe bring him home before we adopt his Older Brother our foster son very soon.
Pray that Anthony will just start feeling better.
Rhonda

2010-07-26T12:52:00.000-07:00

Anthony is now on NO food and is still stooling, He is getting a ultersound of his Stomach to see if there is anything they can see is going on.
Anthony isn't liking being on the Methylpred and is up all day and not wanting to sleep hardly at all during the night.
His Liver function tests are up again.
He is still getting to go on walks which he is really enjoying.
He is still puffing up and down because of his Clots and the SVC syndrome he is on.
Please pray that they might be able to see if anything is going on in his stomach that could be causing the stooling.
Pray for sleep for Anthony and that whoever is up with him can get some sleep.
Pray that the Fondiparinox is still working and is at therapeutic levels.
Pray that if this is GVHD that the new medicines they are giving him will start working soon.
Rhonda

2010-07-23T10:28:00.000-07:00

Today is Antony's 1 Year Post Transplant Day!!!

Anthony is still stooling and throwing up still and now has blood in both.His feeds are basically going down to 5cc to see if they can settle what the doctor's think is a GVHD flair.They are adding another GVHD medicine called beclomethosone and starting him on IV Methylpred.
He has been very playful and still loving going outside through all this.
His tummy just needs to settle down.
Please pray that if this is GVHD that all these medicines will get it under control soon.
Pray for Anthony as he doesn't like Methylpred and he doesn't sleep and is Road rage baby on it.
Pray that he will slow his stooling and that the throwing up will stop very soon.
Pray for our family as we miss being together at home and just want all to be home soon.
Rhonda

2010-07-22T14:40:00.000-07:00

Anthony has had alot of stooling and a few episodes of throwing up so we are basically just watching him and the doctors are just going to assume this is another GVHD Flair.He may be put back on his IV Predisone.
They talked about doing a Endoscopy but they would have to stop the aspirin and the fondiparinox for about 2 weeks because of the bleeding.This wouldn't be good and very risky for this is keeping the clots open and the blood flow open.
So now we hope this isn't a flair and just some kind of bug .
Please pray for the stooling to slow down and that this isn't a GVHD Flair
Pray for his fondiparinox levels to stay where they need to be.
Pray that he will start feeling better soon.
Rhonda

2010-07-21T11:52:00.000-07:00

Anthony has taken about 10 steps back and the doctors are thinking he is having another GVHD flair in his gut.So what does this mean...We really don't know when we will get to bring our son home.
His feeds have been turned down alot,He is back on TPN for nutrition and they will probably do a Endoscopy next week to make sure it's GVHD.
Please pray that his gut will settle down
Pray for the fondiparinox to stay at a therapeutic level
Pray that he will start feeling better soon.
Pray that this isn't GVHD and just some kind of bug that will pass.
Rhonda

2010-07-20T13:44:00.000-07:00

Anthony has been a little more poopy and urpy when he gets his feeds so he will Not be going off any oral Dilaudid until he can tolerate his feeds.
So the plan is to put his feeds at 24 cal and try and get his feeds up to 55 mls an hour and see if he can tolerate them.
He also goes off his antibiotic and the plan was until this morning to have his line removed on monday but now the doctors want to see if Infectious control wants him to stay on the antibiotic until he is handling his feeds or stay off and hope he handles his feeds and gets no line infection.
Please pray he will be able to handle the 24 calorie formula soon and get that up so that he can try the oral dilaudid.
Please pray if the doctors choose no antibiotics after Saturday that he gets NO line or blood infection.
Pray for patience on my part as I just want to bring Anthony home....Its been 4 months and just want to be home with all my kids and husband at 1 time.
Rhonda

2010-07-19T19:52:00.000-07:00

Anthony has gotten to go outside in the last couple of days and is enjoying the sunshine and playing and crawling in the grass.
He has been a bit urpy with the Feeds and the higher calories.
But overall we are just waiting for the antibiotics to end and get his Line out next Monday or Tuesday and then home.
Please pray that the fondiparinox is at therapeutic levels.
Pray for his stomach to be ok with the higher calories and no vomiting.
Pray as he will be put on Oral Dilaudid this week that he will tolerate this.
Pray that it stays sunny so he can go outside for a little bit each day..He seems happier getting out of his room and a new scenery each day...
Pray that we can get the household ready for him this week and weekend to come home.
Pray for Lindsay as she is up with him until Wednesday afternoon and sleep for both.

Rhonda

pictures of our miracle boy!!!

2010-07-18T20:36:00.000-07:00

2010-07-17T18:40:00.000-07:00

Anthony is doing good.He is going to go to oral Dilaudid on Monday and we hope he will be able to handle this as if he can't he will go back on a IV wean and we wouldn't be able to go home until after August 8th then.
The plan for the week is to go to oral dilaudid,Finish his Antibiotic on next Saturday and have his line removed on Monday July 26th and then we are going home after surgery on Monday.
This is all up to Anthony and if he can handle the oral dilaudid but so we ask that you please pray that he can handle it.
Please pray:
Handle the oral dilaudid
Pray for sleep for him
Pray for no new Blood stream infections.
Pray that the fondiparinox will remain in therapeutic levels
Please pray for Anthony's friend Louisa who was admitted with some GVHD Flare.We know how hard it is to be in the hospital in the summer or anytime but especially for someone that is 12 years old.
Pray also for our family as we try and get ready in hopes that Anthony is coming home.
Rhonda

2010-07-14T17:28:00.000-07:00

Anthony didn't sleep during last night at all.So I came up to relieve her and hoping she will get some sleep.
He has had a pretty good day.He is on a awful sleeping pattern so I am hoping he will sleep tonight.
So he has 10 days of Antibiotic and hoping he will be off his IV Dilaudid so we can go home on July 25th.
He will come off his Constant IV Drip of Dilaudid tomorrow and get it every 4 hours.
Please pray for him that he doesn't have any withdrawal symptoms .
Pray for his spirit as he is a very bored 2 year old and he has been in here 4 months.
Pray that these 11 days go by fast for all of our family as we want to bring him home and be a family again in 1 house.
Rhonda

2010-07-13T13:57:00.000-07:00

Anthony has had a good night last night.He seems to like to sleep alot during the day and the doctors are wondering if it because of him being on ativan and getting it every 4 hours but because he was on a ativan drip up in ICU the pain team doesn't want to stretch that out and cause withdrawal symptoms.
His fondiparinox level is a little high so they will give him a little less of a dose tomorrow and see if that helps.
Other than that he is off his TPN by IV and still on the IV Dilaudid and on the wean for this to be off IV sometime soon.
Please pray that the fondiparinox will get to a safe level for Anthony.
Pray that Anthony sleeps at night.
Keep Praying that he can find other ways to express himself without banging his head and scratching the people that love and hold him.
Pray he can keep tolerating his feeds and that his electrolytes stay stable.
Rhonda

2010-07-12T11:11:00.000-07:00

Anthony will be in the hospital 2 more weeks to get his feeds up to where they need to be and to safely wean him down to dilaudid to oral.We hope.
He is doing so good and he enjoys seeing his big brothers.
He doesn't like to sleep at night .
He is enjoying being down on the 3rd floor for walks and he has his favorite nurse until tomorrow for his week.
Please pray for his sleep to get in a better pattern and sleep at night time.
Pray for his fondiparinox to be at a safe level.
Pray that he will do ok getting off the dilaudid and get his feeds up to where they need to be.
Pray that he can find other ways of expressing himself instead of banging his head.
Rhonda

2010-07-11T17:12:00.000-07:00

Anthony is doing good.He is 25 lbs and is playing and doing good.He will start weaning off his Dilaudid tomorrow and will be off of it by Sept 5th.
He is up to 40 mls on his feeds an hour and doing good.
He is still on the antibiotic and we aren't sure if we can go home on this antibiotic.We will see what the doctors say this week..We could go home by the end of the week or in 3 weeks when he ends these antibiotics.
The Big boys got to finally go up and see Anthony on friday and today Lindsay watched all 3 boys as John and I went to starbucks to celebrate our 23rd anniversary...We hope next year we won't be in the hospital to celebrate our 24th...

Please pray:

Fondiparinox to Stay at the safe level for Anthony
Pray for Anthony to tolerate his feeds.
Pray for his GVHD to stay under control in his Gut.
Pray for some of the clots to disappear.
Pray that he doesn't get so worked up that he starts to puff up.
Pray that he comes home when he is suppose to and not too soon.
Rhonda

2010-07-09T20:10:00.000-07:00

Today I got to spend the day with Anthony..It was fun and he is playful but he is still puffing up and then going down.It is part of his clots but it still is very scary for us.
The AC finally started working this afternoon so it is alot cooler in his room...
I talked to the doctors today and they going to go up very slowly on his feeds,take him off his dilaudid slowly.He is also on IV antibiotics so we will probably be in the hospital for 3 weeks.
Anthony got to see his big brothers today and it was good for all 3 of them to see each other..We could tell they missed each other.
Please pray for the puffiness to go down on Anthony.
Pray that he will tolerate his feeds.
Pray that he doesn't go through withdrawals as he is being taken off the dilaudid.
Pray for us to have peace for our family.

Rhonda

2010-07-08T23:16:00.000-07:00

Sorry this is late...Today I finally got to go up and see Anthony...We weren't able to bring the big boys up to ICU and I have been home all week so I finally got to hold my sweet baby today.
He is adjusting to SCCA floor ..It is very very hot here in Seattle and for some reason the AC hasn't worked in his room so its very hot in there tonight...John called the Charge nurse and they are working on it.Lindsay has said it is finally cooling off in the room.
Anthony is doing good...Everyone is so happy to see him and thankful that he is down with them.
Not much happening...The levels of fondiparinox is stable..
Some Liver function tests were up so the doctors are keeping an eye on that.
Please pray the room can stay cool or they can fix it..Lindsay would hate to take down all the decorations she put up.
Pray for his liver function test to get down to normal range.
Please keep praying for the fondiparinox to stay where it needs to be and keep working on those clots.
Rhonda

2010-07-07T20:44:00.000-07:00

Anthony got moved tonight to the 3rd floor...We are so thankful and grateful for all the doctors and nurses in the ICU Floor..
Thank you for being there when our son needed your help.
Now if you want to come visit it will be alot easier to come visit our little man.
Rhonda

2010-07-07T12:19:00.001-07:00

July 7th,2010

Anthony is doing a good job flirting with all the doctors,nurses and anyone that will come play with him.
He is still in ICU as we are hoping that a room opens up on SCCA floor, We are hoping for later this afternoon.
We are ready to see our nurses and all our friends in SCCA floor that we are used to and have become family with.
Anthony had a special visitor yesterday and Louisa and Lindsay got caught but I think its ok and I know that it was good for Louisa to see her friend playing and being happy.I know that Anthony loves seeing her.
Please pray that the fondiparinox continues to keep working in Anthony.
Pray that we can get down to SCCA floor.
Pray that he will be aloud to eat and drink so we can come home.
Keep praying for our family to stay strong through this time.
Thank you again for all your prayers.
Rhonda

2010-07-06T11:11:00.000-07:00

Anthony is moving to the SCCA floor as soon as a room is available.
I can't even say the emotions I am having...We are praising God for our little man and the miracle and the 2nd chance we have been given to love and be his family.
One week ago we were given news that our son couldn't live with these clots but a doctor in Denver said to try Fondaparinox and Aspirin...

In this past week we have seen the Dr's in ICU and BMT teams cry with us because there they didn't think our Anthony would make it.Today the ICU doctors called Anthony a magician because he can come out of anything is what they told Lindsay...I was thinking when she texted me this that No we know who the real magician is...GOD
We know we aren't out of the woods but we are going to enjoy our baby and love on him.

Please pray that the fondiparinux and aspirin will continue to keep the clots clear from his collateral veins.
That he will be able to tolerate his feeds.
Continue to pray for our family as we want to bring him home and be a family once again in one household.

When we get to the SCCA floor it will be easier for anyone to come see him.We will keep you updated.

Thanks so much for praying for our sweet baby and our family...We have felt every prayer and thanks for adding him to all the prayer chains he has been added to.

Rhonda

2010-07-05T17:28:00.000-07:00

Anthony- July 4, 2010

Anthony has been playing,blowing his nurses kisses, learning to be Hulk.

He is really doing good.
His precedex is down to 0.04 mcg and so we are hoping and praying that he will be on the SCCA Floor tomorrow.

His Fondaparnox levels are good and are staying where the doctors wanted.

John said he thought that Dr.Carpenter was amazed at how Anthony looked and is feeling.

Lindsay is up with him so that John and I can rest and actually be together for a few days with the big boys.We haven't seen each other for more than a few hours outside the hospital in the almost 4 months we have been inpatient.

The doctors are talking about putting Anthony on Oral antibiotics and pulling his line as if it gets infected can cause Anthony's clots to flair up and the risk of infection.

Please pray that Anthony will continue to improve and that the fondaparanox will do its job and keep all the collateral veins opened up.

Pray for sleep for Anthony and Lindsay.

Pray that Anthony will want to start eating food and be able to tolerate his feeds.

Rhonda

2010-07-03T11:36:00.000-07:00

please visit for a update
Caringbridge.org
Anthonycox1

Rhonda

2010-07-02T11:22:00.000-07:00

Anthony is doing good.He has been awake,playing and alot of cuddle times with his daddy and sister this morning.

The levels of the fondaparinox is still where the doctors want it.

Now we start trying to take Anthony off his pain medicines and see if we can get down to the SCCA floor.So today's plan is to take him off his Ativan drip today and take him off his dilaudid drip tomorrow and see how he does.He is on a medicine called precedex that they are hoping will help with the withdrawals and he can't go down to SCCA floor on it as it is a sedative.

Please pray that Anthony's level of fondaparinox will stay at the level it needs to be and please pray for withdrawal symptoms for Anthony as he is getting taken off these medicines the next couple of days.

Pray that he won't bang his head anymore.

We want to thank each and everyone that has prayed for Anthony and our family this week.We have felt everyone.Thanks to everyone that has come up to see Anthony I know he has enjoyed seeing more than us this week. We don't know what the future holds but on Tuesday we were given some hope that we are holding onto and aren't letting go of.

Rhonda

2010-07-01T13:16:00.000-07:00

Anthony is doing ok.He still gets cranky and is detoxing off these pain medicines.
We got some good news ...His Fondaparinux is at the level that they want it out and it only took 2 shots to get it there.We are hoping this is what will keep all the collateral clots from clotting off and give them time to become mature to help with the blood flow out of his head so he won't get these massive headaches.
He isn't liking sleeping at all unless one of us are right there with him.
He has started to bang and hit his head again.So this is very hard to watch so one of us have to within a few feet from him at all times.
He is having a MRI and MRA today at 3:30 PST time.to see if there is any pressure in his head and any damage to why he may be banging his head.
Please continue to pray that this new wonder medicine Fondaparinux will start working sooner than later.
Pray for sleep for Anthony at night in his own bed without someone so close to him.
Pray for our family at this time...Thank You again for praying for our sweet boy.
Rhonda

Hope

2010-06-30T08:29:00.000-07:00

The last 2 day have been a roller coaster ride..
We were told by 2 surgeons that they couldn't go in and try and repair any of the clots it was to risky.
Intervention radiology can go in through his vein and try and put a Stint in his tiny vein to open up his veins.That is VERY VERY risky and we were told he could die on the table.
Our hematologist Dr.Matthews came and saw Anthony yesterday and called a Dr. in Colorado and they finally talked and everything the doctors are doing in the past is what she would of done.
Anthony is on a new blood thinner called fondaparinux which he will get a shot.The doctor's in Colorado suggested we get his levels in the higher range of the medicine in his body to try and give Anthony's new collateral's veins time to grow and not clot off.So for now we are hoping and praying that this fondaparinux works because this is our last hope before we would have to make the decision to have this Heroic surgery by Intervention radiology.

Anthony was extubated yesterday and is awake.Right now he wants someone he knows by his bedside so 2 of us are having to stay so that we can one can get sleep and the other can watch Anthony and hold him and comfort him.

Pray request:
For the fonaparinux to do his job and open up more collateral's and keep them from clotting off.
Anthony's mental state as he is being weaned off some of the medicines.That he will have no withdrawal symptoms.
Anthony to rest and sleep.
Praying for our 2 boys at home as his parents and sister are trying to get Anthony through this

People have asked how they can help and the best I could say would be
Prayer for our whole family for peace
Gift cards for gas and food
Meals to hospital or to our home..
If anyone in Seattle area wants to take a very active 6 year old and love on him..I am sure Charlie would love it..He is in camp starting next week from Tues-Fri but would love it any other times.
If you can help you may call me on my cell 206-854-4181 or
mail to
Seattle Childrens
Anthony James
4800 Sandpoint way NE
Seattle Wa 98105

We know that there are alot of people praying for Anthony and as his family we just want to say Thank you for flooding the gates of heaven the last 48 hours on Anthony's behalf.We know that God heard us .

Rhonda

CaringBridge / anthonycox1 / Journal

2010-06-29T21:21:00.000-07:00

"This is Lindsay Anthony's sister writing for my Mom and Dad. Today during the care meeting we had a doctors and caregivers for Anthony all around the table discussing the care. The first person to speak was the Doctor who specializes in hematology and clotting issues, She put a call into her colleagues from Denver Childrens who specializes in clotting. Together they went over Anthony's case and came up with a treatment plan that will not produce results right away but the hope is to keep his colleteral veins open and to help the veins that are open or forming to stay open and not clot off. As a part of this plan alot of test and monitoring will take place. these test are not without risk but right now this plan seems to be the best. My mom will update late when she has the time, right now she is holding sweet Anthony and loving on him.

With this new treatment we all have alot more hope and know that God is watching over sweet Anthony. The doctors have extubated Anthony this afternoon so we have been able to hold him and love on this sweet baby. This past 24 hours I have truly been able to witness the amount of people that have been touched by Anthony, we still do not know what plan God has for Anthony but I know we have a peace knowing that God is being glorified through this sweet baby.

As Anthony's sister I just wanted to say thank you for your prayers it is making a difference not only in Anthony's life but in the lives of everyone here at the hospital. God is still in the buisness of making miracles and although his road is long from over the hope we have for Anthony is enough to keep fighting.

Be blessed,
Lindsay"

2010-06-29T12:52:00.001-07:00

We are having our care conference with all the doctors,surgeons and social workers to discuss our options at 3pm PST time.Please pray for us and our family..I will update when I can.
Rhonda

2010-06-28T22:47:00.000-07:00

The doctors came in after the ultrasound and echocardigram and the clots are still there and right now Anthony can't live with the clots there.
The only other option we have is to try a Heroic Surgery and try and put a stint in his artery.This is a 50/50 chance for Anthony to live.
Right now we want to do what is best for Anthony and don't want him to suffer.We have some big choices to make and would appreciate all your prayers .
As his mommy I don't want to even think about having to say goodbye to him but God has had a plan since we walked in that hospital room 2 years ago.
Please keep praying that there is some kind of miracle and we can bring him home to be a happy little boy.
Rhonda

2010-06-27T15:01:00.001-07:00

John called while in church...
Anthony has had positive blood infections the last 2 days ...The doctors are thinking that the TPA is working and breaking up the clots and that is where the infections are coming from.Some of the blood work also shows that his blood is doing something that it is suppose to be doing.
He will taken off the TPA tomorrow at 11:00am and hopefully taken off the ventilator sometime tomorrow.They are hoping to get a ultrasound before taking him off the ventilator and all.
Please keep praying that the clots will disappear enough so that we can get blood flow to his head and that the pressure will come off his head so he won't have these monstrous headaches.
Pray for a safe extubation tomorrow.
Rhonda

2010-06-27T00:00:00.000-07:00

Anthony 5 months old

Dear Anthony,
Today marks a special anniversary...It's the day that your Daddy and I walked into Children's Hospital and walked in a room where you were laying in your crib.We of course fought who was gonna hold you first.You were placed in your daddy's arms and we instantly all fell in lov with you.We walked in the hospital not knowing really what HLH was and were told you would need a Bone Marrow Transplant and they had 2 matches already.
We have taken care of you ever since.We have had lots of time living in a Hospital and time at home with your big brothers and sisters..I think you really love being home.
You are such a brave little boy and a big fighter.God has watched over you.
Thank you for coming into our lives.I really would hate for you not to be in it..
Keep Fighting baby boy.Your mommy and Daddy love you and will keep fighting for you..
Happy Gotcha Day sweet boy.
Love,
Mommy

2010-06-26T17:03:00.000-07:00

Anthony has needed sedation medicine every 2 hours.
The General surgeons came by and said it was too risky of a surgery for Anthony to try and get any of the clots out and put in a Stint.
We are still waiting from the thorasic surgeons to see if they maybe able to help Anthony.
If no one feels that surgery would be safe for Anthony than we need to pray that the TPA will do something and help open up these clots and that the collateral veins will open up soon and release the pressure in his head.
The plan for now is he will stay on the TPA until Monday sometime,then the plan will try and get Anthony on a pain plan that will work for him.He is not a normal kid so this might be quite challenging.
Please pray the TPA Works so Anthony isn't in any pain.
Pray that the collateral veins open up quickly.
Rhonda

2010-06-26T09:46:00.000-07:00

Anthony is doing ok..He is not liking the breathing tube and he wants it out.They are trying there best to keep him sedated and comfortable.If we had as much sedation he gets we would be sleeping for a week or so.
Please pray that the TPA is working.That enough clots will let the pressure from his head to get rid of the headaches.
Pray also that he will just calm down and not fight the breathing tube.
Rhonda

2010-06-25T11:47:00.000-07:00

Anthony is incubated and the TPA has started.
Please pray that this will continue to open up the clots and open up the new collateral veins so the pressure can start being relieved from his head.
Pray for NO internal bleeding.
Pray also for the sedation of Anthony...He is a mystery boy and for some reason just walks right through anything the doctors try to give him.
Also we are still waiting to hear from the surgeons to see if Surgery might be a option to either remove some of the clots or putting in some kind of stint.

Rhonda

2010-06-24T21:08:00.000-07:00

We had a meeting with the PICU and BMT teams today to see what the options were for Anthony's care...
We are still waiting to hear if the surgeons think it is possible to go in surgically and break up the clots.
So for now we are going to start Anthony on TPA for a 3 day course to see if it can open up some of the veins .
We did find out that 1 of the veins is starting to open up.So they are hoping that will be enough to get some of the pressure off Anthony's head
Please pray that the TPA will open up the vein that it started to last time,and that it will give the new collateral veins time to open up and start relieving the pressure off his head.
Pray for NO complications from the TPA.
Rhonda

2010-06-24T11:34:00.000-07:00

Anthony had a little better night last night but he was still very restless.He got a 1 on 1 nurse so I got a little bit of sleep but it is hard to sleep in the same room with him and I am a very lite sleeper.
Anthony has a New Blood infection so he was started on Meropenen this morning,this is # 4 infection in 13 weeks we have been here.
We are waiting to hear from the Internal Radiologist and surgeons to see if it is safe to go in and try and break one of the main blood clots and put in a stint to help with the pressure in his head.We should hear something by hopefully this afternoon.
It is a very risky surgery especially since Anthony is already Immune compromised.
Please pray for Anthony to get some sleep and for his agitation.
Pray for the pressure in his head to subside.
Pray for all the doctors and surgeons discussing our son and how to treat him.He is a very complex case and we want to do what is best for Anthony and our family.
Rhonda

2010-06-23T14:25:00.001-07:00

As I write this I don't even know what to say. ..Anthony had a ultrasound and it showed no real change to the clots they are still there but the good news is that his body is making new vessels to his head.

We are going to try and wean him off some of his pain meds but to do this safely they need to put him on Presidex which is a sedative and he seemed to respond to it when he was on the ventilator.

He will start a New shot that will replace the Argatroban.
Please pray for us and Anthony as we have alot of questions and are going to hope to have a conference with all that are involved in his care.
Pray that Anthony will get the sleep he needs.
Pray for pain and his agitation that it will be managed .
Pray for peace for our family at this time

Rhonda

2010-06-22T14:52:00.000-07:00

Anthony is back to scratching me and hitting himself or trying to headbutt again.It has been a rough 4 days for John and so he went to work and I am here until Friday evening.
Anthony will have a angiogram tomorrow to see if any of the clots are going away with the this new drug and if he can get it by shot form starting tomorrow.
Please pray for Anthony to stop hitting and hurting himself.It is Very hard seeing him like this.The only thing that does work they can't use on the SCCA floor.I am not willing to go down there if he can't get the medicines he needs to keep him comfortable.
Pray for the angiogram as it is very risky for Anthony and he may be put back on a venilator.
Pray for sleep for Anthony.
Rhonda

2010-06-21T10:54:00.000-07:00

Anthony had another bad night and the nurses finally gave him some Clorahydrate and within 5 minutes he was asleep.So we will stay in the ICU unit and see if the Pain team can come up with other medicines besides Clorahydrate to use on him
Please pray that the doctors can figure out what is causing him to be so grumpy and come up with pain management so he can go to the regular floor and be with his friends.
Keep praying the Anticoagulants keep the right levels for Anthony.
Pray for us as we have now been in the hospital 3 Months and its starting to make us very tired parents.
Rhonda

2010-06-20T17:44:00.000-07:00

Anthony has been a bit grumpy last night and today.He just wants to be held or John standing by his crib.When he gets grumpy he starts to bang his head or try to head butt us.
His argatroban is still fluctuating up and down.

Please Pray that Anthony isn't going to get puffy again and that he will sleep on his own.Pray for his pain and getting him off the pain medicines safely.

Pray that his argatroban will stabilize.

Pray that he will start feeling better so we can have our happy baby back.

We should be moved down to the floor unless something happens in the next 16 hours.

Rhonda

2010-06-19T11:03:00.000-07:00

Anthony is waking up from his deep sleep and is doing better.His level on his new Argatroban is starting to level off.
He is up and wanting to watch elmo.So his dad put him in his wedge.His muscles in his neck and body will take time to get his muscles to strengthen.
We aren't sure when he will be able to get down to the SCCA floor but it is VERY VERY Full so hopefully we will be down there with our friends soon.
Please pray for his motor skills.
Pray for him as they wean him off his pain medicines that he doesn't have alot of withdrawal symptoms.
Pray for his Argatroban to finally be at a safe level for Anthony that it will start working.
Pray that he won't get frustrated and won't try to bang his head.
Thank you for all the prayers for our sweet boy.He is far from getting out of the hospital.Pray these clots will just disappear.
Rhonda

2010-06-18T10:05:00.000-07:00

Anthony had a pretty good night with a few times of extra sedation but overall he looks a little less puffy and when he wakes he doesn't thrash as much.
The doctors are trying to get his new medicine argatroban at a good therapeutic level.
They are encouraged he has needed less sedation overnight.
We can hope and pray that this argatroban is the answer to his clotting issues.
Please pray that Anthony will get to a therapeutic level of his argatroban and will need less and less sedation.
Pray that he will just start feeling better so that we can see his happy and sweet smile.
Rhonda

2010-06-17T18:54:00.000-07:00

Anthony is still very agitated.We are trying to keep him very sedated and from hurting himself.
The hematologist Dr's finally came by this afternoon and so we are going to stop the heparin and start him on argatriban tonight.
We are and so are the doctors are hoping this will help with the swelling and be the solution to him puffing up.
Please pray that this will be the answer to our prayers to getting our sweet boy back and healing him.
Pray for sleep for him and less agitation from the swelling.
Rhonda

2010-06-17T13:27:00.000-07:00

Not much has changed except Anthony is more and more agitated and i has been very hard to keep him sedated.We have had a great nurse the last 2 days and she said if we weren't here helping that he would probably need getting 1 on 1 care with a nurse to keep him safe from bumping his head and pulling his leads,lines and NG tube out.They have put him on a Dilaudid drip and the rate has gone up in the last 3 hours and he keeps getting bolus of dilaudid and ativan and nothing is working.He is still getting chlor hydrate but he can only have that every 6 hours.
There are still no decisions on his Clots and how to treat them.His heparin level are finally therapeutic levels and the BMT doctors are hoping they will take care of themselves.The ICU doctors are not even close to thinking about this.The BMT Doctors are putting in a
referral for the Hematology doctors to come and finally take a look at Anthony and see what they can do to help our sweet baby.
Please pray for Anthony's sedation and keeping him comfortable.
Pray for the hem Doctors to come today.We need answers NOW not another day or two.
Keep Praying I keep asking how much can his little body take.He is a very strong and feisty little guy but he is tired and I know he just wants to feel better and we want our sweet baby back with us.
Rhonda

2010-06-16T10:13:00.000-07:00

Anthony had a good night last night.He slept for most of the night.When he woke up this morning he watched some elmo and is asleep right now.He seems a little less grumpy but we will see.
He is going to kept up in the ICU to keep an eye on his puffiness.
The nurses did put him on blow by oxygen late last night.
Our doctor for the BMT is going to talk to some Hematology doctors about other therapys to take care of the clots in Anthony's body.
His Liver Functions are going down.
Please pray for his Liver functions to stabilize.
Pray that he will stay calm and that the medicines he is on will calm him down so he doesn't get so worked up.Pray for his withdrawals from the medicines.
Pray that his airway will remain clear and that he will be able to breathe on his own.

Rhonda

2010-06-15T17:36:00.000-07:00

Anthony was suppose to be transferred to the Hem-Onc Floor today but about midnight last night Anthony really started to get agitated and nothing we did or tried could console him.He started to get alot puffier in his face again and the nurse called the Doctors in and it was evident that Anthony was getting sick again.Smacking his head,pulling at his hair and so it was decided to put Anthony back on I.V. Heparin and stay in the ICU.
The doctors don't really know what else to do.They are exploring other options but now they need to keep his airway clear so he doesn't have to go back on the ventilator.
He is resting now thanks to a medicine called Hydrocloriside...
Please pray for no more swelling,
Pray for his airway to stay clear and him to remain on Room Air and not have to go back on the ventilator.
Pray for a miracle because right now thats what we need.Pray that the Hematology doctors will have a answer and some special medicine that can heal our sweet boy.
Rhonda

2010-06-14T12:28:00.000-07:00

Anthony seems to be doing good..He is off his oxygen and his Liver function tests are coming down.So we are suppose to be going back to our home floor sometime today.It will be good to be around our friends on the SCCA floor.We are hoping this happens sometime soon.
Anthony is moving a little more .He will have to regain all his muscle tone again.He is able to get his Binky in his mouth and push the buttons on his play phone.
We have made a record of being in the hospital 3 months now.Wow where has the time gone.
He was put back on Ursidiol to protect his liver from GVHD.
Please pray that his Liver Functions continue to get back to normal
Pray we can get to SCCA today as of last Friday they were pretty full.
Pray for his muscle tones to come back and for his sore throat from the breathing tube.He does still enjoy watching Elmo.
Keep Praying for our sweet boy.
Rhonda

2010-06-13T14:34:00.001-07:00

Anthony is waking up a little more each and every hour.It is taking him a little more since his liver isn't working the way it is suppose to.
His AST is 1893 down from 2130 Yesterday and his ALT's is up a little to 997 from 942.
His Bun and Creantine are about the same.
He is still on oxygen as he is needing a little bit of support for that.
Please pray for his Liver and Kidney to start working the way they are suppose to.
Pray for him to not have to many withdrawals symptoms from all the narcotics and medicine he has been on.
Pray that we can get him out of the ICU sometime this week where he will be able to see other kids and go on walks.

Rhonda

2010-06-12T08:23:00.002-07:00

Anthony is down to 1 sedation medicine and they will keep weaning him off it.He is starting to wake up..I just said hi to him

I talked to his nurse and his liver function test AST is up to 2150 and also his ALTs are up.

The good news is his creatine is down to 0.5 which is almost normal 0.3.Also his BUN is also down from yesterday.

Please pray for him to continue to wake up.
Pray for his Kidneys and liver to start working the way they are suppose to.
Pray his Liver Functions start working SOON.
Rhonda

2010-06-11T18:36:00.000-07:00

Anthony was extubated and did a great job..As of a few minutes ago John said he is still not awake..They say this is normal.
No news on the liver test,We will hope and pray that his numbers are down from today, We will know tomorrow am.
I came home to be with the big kids.
Please keep praying for his liver and kidneys #'s to come down.
Pray that Anthony will wake up in his time from being incubated.
Pray for sleep for us all.
Rhonda

2010-06-11T10:47:00.000-07:00

Anthony was extubated this morning and seems to be breathing good.He has the cannula's with oxygen but he is doing good.
His Alt are 1040 and Ast's is 750 which is UP from yesterday.The liver ultrasound showed that his liver is enlarged and some slow flowing blood flowing through. The Bone Marrow team doesn't think it is GVHD but no one knows what is going on with Anthony.So they are running some test Hepatitis 6,Mono and some other tests to see if this is a virus.
His Creatinine in his Kidneys are at 1.1 which is very high and if it gets any higher they may have to put him on dialysis to see if this helps his kidneys.
Please pray for his Liver functions to come down or for some answers very soon. Pray for his kidney's and liver to some how start working.
Right now we are very scared and not knowing what is going on with him.Pray for peace for us.

Rhonda

2010-06-10T12:31:00.000-07:00

Anthony is down to 25 % oxygen on the lower settings on his ventilator.He had a very eventful day yesterday and went back up to 60% but over night he got back to 40% and since this morning now he is down to 25%.
His Liver function test AST and ALT are very elevated so he has had a ultrasound and some more blood work.

Please pray his GVHD is under control and not the cause of the Liver function being up.
Pray that he will stabilize on the Vent and that he can be extubated as soon as he is ready.
Pray for some of the swelling in his feet and hands to subside.
Rhonda

2010-06-09T11:13:00.000-07:00

Anthony is just hanging out again..They decided not to extubate him as he was at 35-40% this morning.Some of his blood work came back high.Then this morning after rounds his BP and Oxygen went down so they are glad they didn't extubate him.He is now on 60% oxygen.
Please pray that whatever is going on will stabilize.
His Heparin levels are where they need to be.
Only God knows when he will get to hold him again.
Please keep praying for our sweet baby.He is such a fighter.
Rhonda

2010-06-08T17:07:00.000-07:00

Anthony's Dr. just came in and his clots are improving and right now he has been on TPA for over 100+ hours and to keep him on the TPA is very risky so he will be taken off of it.
He will be kept on the Heparin drip for awhile
They are going to see about extuabating him again tomorrow.
Please pray that the TPA has done its work and gotten shrunk some of the bigger clots and that he has enough blood flow to all the vessels they need.
Pray that he will be extuabated when it is completely safe for Anthony.
Rhonda

2010-06-08T10:28:00.000-07:00

Anthony is still on the ventilator and he has needed more oxygen and his levels are in the low 90's so he won't be extubated today.
He is still on the TPA but there be great watching of him keeping sure there isn't any internal bleeding. They are going to talk to Dr. Matthews who is the clot specialist here in the hospital because the TPA could be very dangerous for Anthony if he starts to internal bleeding.
The ultrasound did show some thinning in one of his femoral artery's and the levels are good and showing that something is working but they aren't sure where.
Please pray for Anthony to be able to start breathing on his own and get weaned off his ventilator.
Pray for NO internal bleeding.
Pray for us as we watch our sweet baby just laying there and I we just want to hold him and hear him say DANG IT or ELMO....Right now that would be music to my ears or to have to watch ELMO from morning to night....
Keep fighting baby boy...Your family love you and can't wait to hold you again and play with you..

Rhonda

2010-06-07T14:25:00.000-07:00

We thought Anthony was going to be extubated today but his oxygen levels dropped and he got puffier.So he is still on the breathing machine.
The blood work is showing that the TPA is working so he is still on it.
Please pray that Anthony will be able to breathe on his own soon.
Pray for the puffiness to go away.
Pray that the TPA is working in all the right places.
Rhonda

2010-06-06T18:25:00.000-07:00

The doctors had a looked down his throat and the swelling in his throat has gone down and for the most part he is breathing on his own.They are talking about maybe getting him off the breathing machine soon or at least weaning him off it more this week.
They will do the ultrasound tomorrow.His blood work is showing that the TPA is working but they aren't sure where.
Please pray he can get him off the breathing machine sometime this week.
Pray that the ultrasound shows that the TPA is working.
Pray for Anthony to start feeling better.
Pray for the edema in his hands,chest and hands to go down.
Rhonda

2010-06-05T11:07:00.000-07:00

Anthony is a little less puffy and so we are happy about that...He is a very feisty boy and seems to like to get his hands lose and go straight for his breathing tube.
He had a ultrasound yesterday and it showed not alot of changes from the previous ultrasounds.So they did up his TPA last night.He will have another ultrasound tomorrow morning that we are Praying will show some good news.
Please pray for the TPA to start working and for no excessive bleeding.
Pray for his puffiness to start going down.
Pray for him to stay calm.

People have asked how they could help and we have always had our pride but now that we have NO clue how long we are going to be here a friend of mine has written something up..And to say the least I am very reluctant to posting it.We are so thankful for all your prayers and ask that you continue to pray for our sweet boy..

"If you or someone you know is at all capable of helping you can send a donation to
Rhonda James
8405 Seward Pk Ave south
seattle wa 98118
they are also in need of food and gas cards

food: McDonald's, taco bell, ect..

gas cards include Texaco, Safeway, and Exxon

if you cant donate any of these items you can still help

The Jame's have

3 children who could use some encouragement during this difficult journey.
they have 2 little boys
charlie is 6 and fortress is 4

They also have a daughter who is 21 and is currently in college and could use and encouraging letter to keep her spirits up and to keep going through with school

you can also keep up with Anthony journey by visiting his caring bridge site
www.caringbridge.org/visit/Anthonycox1
please keep praying for baby Anthony"

Rhonda

2010-06-04T11:09:00.000-07:00

Anthony is such a fighter..He woke up and got his restraints off and went right for his breathing tube..I kept telling them he was getting used to the pain medicines and thy needed to give him something else..Well he is now on another muscle relaxer and it seems to be keeping him comfortable.
He will be getting some plasma until he gets off the TPA and they want to keep his platelets over 100,000 as he is getting all the blood and clot thinners.So he may be getting more transfusions in the coming days.
His swelling has gone down in his chest and right side a little bit so that is encouraging.
Please keep praying for the TPA to start working and the swelling in his upper body go down.
Pray for the clots to dissolve quickly.
Pray they can keep him sedated as he is such a fighter.
Rhonda

2010-06-03T21:15:00.000-07:00

Anthony is doing ok..he even opened his eyes today. Our nurse and PICU doctors are surprised that he is such a fighter and still awake sometimes with all the medicines they are sedating him with.
We started the TPA and Heparin about 12:30pm today.Please pray for no complications and that the Clots will start dissolving very soon.
Anthony weighs about 10.6 KG which about 1.4 of that is water.The diuretics seem to be working but he is so positive on his fluids.
The next couple of days will be very busy with blood draws,ultersounds.
Please pray that the TPA starts working soon.
Pray for the extra fluids to come off.
Pray for our sweet baby to relax.
Pray for all the nurses and doctors in his care that they have the knowledge to care for our sweet boy.
Rhonda

2010-06-03T10:52:00.000-07:00

Anthony was pretty sedated all night they are really trying to keep him sedated and so he slept most of the night.
He is on alot of diuretics to try and get his kidney's working and get him less puffy.
We will start the TPA this afternoon.John and I will be here the next couple of days just in case something happens.We ask for lots of prayers for no complications.Pray the TPA starts working immediately.
Pray he can stay sedated and stay comfortable.
Pray for Peace for our family.
Pray for the TPA to work.
I will keep you all posted as I am able.
Rhonda

2010-06-02T20:40:00.000-07:00

June 1st 2010 in PICU

June 2,2010- Day 2 in PICU His New Line and still very puffy