Prayers for my son

[ibeapoet]

I'm making this an official request.

Bryson's blood smear came back today. It's not the news we wanted to hear. His white blood cells are abnormally shaped and immature. That tells the hematologist that his bone marrow isn't working like it should. He's been refered to a pediatric hematologist in johnson city that works with St. Jude. I've done been warned that will more than likely they will want a bone marrow test.

It's possible that it's not cancer but some of the other things are even more rare. I keep hoping that the test was a fluke. But the hematologist that did his slide at UT asked about stem cells. When he found out that I was pregnant his recommendation was that I bank this babys stem cells. And I know nothing about core blood or stem cell banking. So i've got tomorrow set aside for researching this out and trying to figure out how much this is going to cost. I know insurance won't cover it.

It's not been a good day.

[keebra]

My thoughts and prayers are with you and your family.

[mspete]

I know this must be terrifying for you. My thoughts and prayers are with you that Bryson can get help and recover soon. God bless.

[Cpogie]

Amanda, I will surely keep your entire family in my prayers. We have to put our faith in the hands of god and the doctors, and pray that this is a fluke and whatever it is can be taken care of asap. ...I would also check with St. Judes for help with the stem cell and any other help you may need. They will not turn you away. Hugs, and if there is anything I can do for you, I am here.

[momsangel]

<3 I send many prayers<3 always just a phone call away

[bvanpeltsw]

I never check this thread, but I noticed that Amanda had a prayer request.

Thinking of you, Bryson and your family. My specialty practice in social work is family and kiddos so please feel free to ask any question and I will get you an answer.

[bugspost]

Sending prayers, hugs, love to you & your family & extra special one to your son..............:)

[AzuAngel]

Sending prayers for your son and your whole family. It is so hard not knowing what is wrong but I hope that they find what is making Bryson sick asap. Hugs.

[giraf98]

Sending prayers your way Amanda!

[2550]

Sending thoughts and prayers. Hoping that everything will turn out ok for you all.

[ibeapoet]

Thanks everyone. Just keep my family in your prayers. It's scary for me but even harder for my hubby, who lost his mom to cancer. She was in her early 40's That's his worst fear.

I never check this thread, but I noticed that Amanda had a prayer request.

Thinking of you, Bryson and your family. My specialty practice in social work is family and kiddos so please feel free to ask any question and I will get you an answer.

Thanks Brandy. As of right now I don't even know what questions to ask. My mind is spinning in way to many directions.

Amanda, I will surely keep your entire family in my prayers. We have to put our faith in the hands of god and the doctors, and pray that this is a fluke and whatever it is can be taken care of asap. ...I would also check with St. Judes for help with the stem cell and any other help you may need. They will not turn you away. Hugs, and if there is anything I can do for you, I am here.


The pediatric hematologist we see is with St. Jude. We'll be going to Niswonger's Childrens Hospital in Johnson City. It's a St. Judes Children's Research Hospital. I feel better that it's St Judes. And I'm greatful that we only live about an hour and 45 minutes from it. We are going to talk to the hematologist about the stem cell stuff, when we meet with him on friday. I'm dreading this appointment so much. It breaks my heart to think of Bryson having to have all these test.

[Texmel]

I agree, Amanda. Blessings and prayers for each of you and praying healing for little Bryson. God bless and protect each one of you.

[SSIAnkie]

My thoughts and prayers for Bryson and your family. Hope they get this figured out soon, and get him to feeling better.

[Cpogie]

Amanda, I am thinking about you and your family...sending lots of prayers and well wishes your way.

[saved1]

Amanda, I cannot imagine having a child with such serious physical needs. Prayers are definitely with you and Bryson.

[notyard]

Sorry to read this news. Praying for Bryson, you, and your family.

[SSIAnkie]

Just wanted you to know I'm thinking of you today. Prayers for Bryson and your family.

[Cpogie]

Amanda, I have been thinking about you today. I will keep you all in my prayers and I hope Bryson has a good week at school and especially at his graduation next Monday.

[we3kings]

I just read this and I can imagine how fearful you must be of the unknown. My thoughts and prayers go out to your family and your son. Hoping the best outcome in your news.

[2550]

Hope you are doing ok today. Hang in there it's going to get better. Bryson will be fine and you'll have a brand new baby. Life will be good!

[SSIAnkie]

Hoping today is a better day for you and your family. St. Jude's is a great place, they will get this figured out. Bryson will be feeling better before you know it. Hang in there Amanda!

[Texmel]

Agreed, Amanda! Y'all are in my prayers!

[ibeapoet]

Thanks everyone. Your thoughts and prayers mean alot to me. Friday we meet with Dr.Kalwinsky, he's the head of the hematology/oncology department. I'm scared to death. Then Monday we meet with a pediatric cardiologist for a echocardiogram to check for inflammation around his heart. This is a precaution where his ESR and C-reactive protein levels are so high.

His end of the school year party was supposed to be friday. He was a little upset that he couldn't go. Another class was having theirs today and invited him to come to theirs. That made him a happy little camper. Tomorrow he has a trip to Hippy Joe's farm. The hubby is going with him.... that ought to be interesting. He's looking forward to it.

Keep us in your prayers, especially friday. We don't know what kind of news we'll be walking into. I'm trying to prepare myself, so that I can stay sorta calm. I'm trying not to set my labor off with stress. The official date of the c-section is June 6th. At least I can try to plan any tests for Bryson before that date.

[Texmel]

Thanks everyone. Your thoughts and prayers mean alot to me. Friday we meet with Dr.Kalwinsky, he's the head of the hematology/oncology department. I'm scared to death. Then Monday we meet with a pediatric cardiologist for a echocardiogram to check for inflammation around his heart. This is a precaution where his ESR and C-reactive protein levels are so high.

His end of the school year party was supposed to be friday. He was a little upset that he couldn't go. Another class was having theirs today and invited him to come to theirs. That made him a happy little camper. Tomorrow he has a trip to Hippy Joe's farm. The hubby is going with him.... that ought to be interesting. He's looking forward to it.

Keep us in your prayers, especially friday. We don't know what kind of news we'll be walking into. I'm trying to prepare myself, so that I can stay sorta calm. I'm trying not to set my labor off with stress. The official date of the c-section is June 6th. At least I can try to plan any tests for Bryson before that date.

Amanda, thanks so much for giving us an update. I have been praying and wondering what is next. May God heal your boy, give you good news, keep you and baby calm and at peace with His hand upon you all! I am so glad the other class invited Bryson to their party!

[SSIAnkie]

Amanda, just wanted you to know I'm continuing with my prayers for little Bryson and your family. St. Jude will know how to help him, they are the best! God Bless...

[Cpogie]

I will be thinking about you all tomorrow. Prayers that everything goes well.

[ibeapoet]

Relief! No cancer. That was our worst fears. His blood smear came back with normal cells this time. Apparently, everthing is just messed up when he's sick. He had blood work, a tb test and a Ct done yesterday. The CT did show that he has some sinus disease, he doesn't think that that's what is causing all of his problems but some of the symptoms during a episode. So for that we're doing another course of antibotics this one is for 2 weeks and some spray for his nose. Hopefully that helps his sinuses. He's concerned too because he's off his growth curve. Bryson's always been around the 50th percentile in height and weight and now for height he's at 25% and weight 10%. They running some tests for juvinille arthritis, a bone marrow infection and some auto immune stuff.

This doctor actually called Brysons peds doc and took a piece out of his rear. That makes me feel a little better. We are to follow up with his regular doc in 2 weeks. We should have the rest of the bloodwork back by tuesday. I'm relieved because it's not our worst fears but still concerned because we're back to what the heck are we dealing with.

[notyard]

Mixed news overall, but such good news that there is no cancer! Praying that they figure the problem out completely and soon!

[Cpogie]

Amanda, that is good news all in all, meaning NO cancer! They will figure out what is causing all this illness. So relieved that that doctors visit is over! I don't know if I'd be that worried about the growth thing right now. My son had this huge growth spurt when he was in his teens...he grew up to be 6'4.

[ibeapoet]

We're all short here. Joe's 5'10, I'm 5'3, my father in law was 5'5. I'm not quite worried about the height, just the weight. Maybe I can fatten him up a little over summer break. He's 44.5 inches tall and weighs 45 lbs. I hope we can figure him out or he grows out of it. Thanks for all the prayers I'm very thankful for them. Prayer changes things.

[smpwb]

Good news. Continued healing and prayers sent

[Cpogie]

We're all short here. Joe's 5'10, I'm 5'3, my father in law was 5'5. I'm not quite worried about the height, just the weight. Maybe I can fatten him up a little over summer break. He's 44.5 inches tall and weighs 45 lbs. I hope we can figure him out or he grows out of it. Thanks for all the prayers I'm very thankful for them. Prayer changes things.

We are not tall either. Dh son from his first marriage is 6'2. Dh is only 5'10' too..and I am 5'5..use to be 5'7'...I shrunk. lol And, either of our parents were not tall either....go figure...
My son was also skinny...and he still is!

[SSIAnkie]

So glad to hear it isn't cancer. They will get this figured out. Also glad that this Dr. called his Peds Dr. Maybe now the peds will listen to your concerns! Continuing with prayers for you all. When I was a teenager, I worked at an ice cream shop here in town. The trainer at our local gym would send the body builders there. They always ordered malted milk shakes. Not sure if malt is still available, but if it is it might be something good for Bryson.

[mspete]

Amanda, I am so happy that there is no cancer. Now that the doctors are working together the reasons for the illnesses will be found and Bryson will be on his way to a speedy recovery. Hopefully you will be buying new clothes and shoes for him as his growth spurt will begin. God bless.

[ibeapoet]

I don't know if I want to buy new shoes!! LOL That's the part of him that keeps growing. He already wears a 1. He's went through 3 sizes this school year!!

[bvanpeltsw]

So happy to hear that it is not cancer. I've been thinking about you guys! Sending love and hugs to you all!

[we3kings]

I'm so happy to hear it is not cancer! I think he is underweight just because he has been ill so long. This happened with my daughter also. I think once they figure out what is wrong and he feels better he will start eating more and gaining weight and then the growing can begin. Sometimes it can take a lot of trial and error before they figure out what is wrong, so don't give up hope, it will happen. Take care.

[Texmel]

Relief! No cancer. That was our worst fears. His blood smear came back with normal cells this time. Apparently, everthing is just messed up when he's sick. He had blood work, a tb test and a Ct done yesterday. The CT did show that he has some sinus disease, he doesn't think that that's what is causing all of his problems but some of the symptoms during a episode. So for that we're doing another course of antibotics this one is for 2 weeks and some spray for his nose. Hopefully that helps his sinuses. He's concerned too because he's off his growth curve. Bryson's always been around the 50th percentile in height and weight and now for height he's at 25% and weight 10%. They running some tests for juvinille arthritis, a bone marrow infection and some auto immune stuff.

This doctor actually called Brysons peds doc and took a piece out of his rear. That makes me feel a little better. We are to follow up with his regular doc in 2 weeks. We should have the rest of the bloodwork back by tuesday. I'm relieved because it's not our worst fears but still concerned because we're back to what the heck are we dealing with.

Fantastic news, Amanda! I am so, so happy to hear this! Keep us up on the news as you get it, we will keep praying!

Hugs!

[SSIAnkie]

Thinking of you today Amanda. How is little Bryson feeling?

[ibeapoet]

Bryson got to go to his Kindergarten Graduation last night and had a blast. I'm so glad he wasn't sick for it. We took him for milkshakes afterwards. I can't believe that my little boy is growing up!!

He'd been feeling just fine, until this morning. He's running a slight fever. I'm waiting to see what other symptoms pop up with it. It's not quite time for another crazy fever episode yet.

He had his echocardiogram done yesterday. We should be getting the results sometime today or first thing tomorrow. The rest of his blood work was supposed to be in today too.

[Cpogie]

Bryson got to go to his Kindergarten Graduation last night and had a blast. I'm so glad he wasn't sick for it. We took him for milkshakes afterwards. I can't believe that my little boy is growing up!!

He'd been feeling just fine, until this morning. He's running a slight fever. I'm waiting to see what other symptoms pop up with it. It's not quite time for another crazy fever episode yet.

He had his echocardiogram done yesterday. We should be getting the results sometime today or first thing tomorrow. The rest of his blood work was supposed to be in today too.

I'm so glad Bryson got to go to his graduation! I hope the rest of his tests come out negative! Let's hope he is on the mend. Hugs.

[ibeapoet]

Still haven't got any results yet. Hopefully no news is good news.

And yep i believe we are dealing with it again. His temp is now 103.8. YUCK! He's already on antibotics to clear out his sinuses, geeze.... it's going to be another long night.

[Texmel]

Still haven't got any results yet. Hopefully no news is good news.

And yep i believe we are dealing with it again. His temp is now 103.8. YUCK! He's already on antibotics to clear out his sinuses, geeze.... it's going to be another long night.

Oh, Amanda! God bless y'all and heal him!

[Cpogie]

Amanda, I sure hope they figure this out straight away! So sorry Bryson is feeling sick again...prayers and hugs for you all.

[moonchaser]

I haven't been to this thread in awhile-so sorry to hear that your son has been sick. I'm glad to hear that he doesn't have cancer-I hope you find out what it is soon. Prayers and good wishes.

[we3kings]

How has your son been doing? Have you gotten any news on what it could be yet?

[ibeapoet]

He's doing really good right now. His last fever broke on the 22nd. He'd had it for 8 days. Over the last week I can tell he's picked up some weight. YEAH.

We got a typed up report yesterday from St. Judes and everything came back normal this time. No auto immune, no jv arthritis, no cancer, no bone marrow infection. And his inflamation markers are all back to normal, after being way up there. They are scratching their heads. We follow up with his peditrician in a couple of weeks... by then, if he continues his pattern, he'll be sick again. The one thing noted was unlike the peditrician they don't believe it's a virus or bacteria, simply because no one else is catching it and it's the same symptoms over and over again.

His echo cardiogram did show some minor valve abnormalities, but was still considered within normal limits. And this is something that will resolve itself as he gets older.

Everytime he gets better I keep hoping and praying that he's grown out of it or that what ever it is has left his system. He just didn't want to be sick when the baby got here and hopefully, it looks like he's going to get his wish.

[saved1]

PTL! The Great Physician heals the sick. Glad to hear he's doing better. :)Doctors scratching their heads will understand some day.

[we3kings]

He's doing really good right now. His last fever broke on the 22nd. He'd had it for 8 days. Over the last week I can tell he's picked up some weight. YEAH.

We got a typed up report yesterday from St. Judes and everything came back normal this time. No auto immune, no jv arthritis, no cancer, no bone marrow infection. And his inflamation markers are all back to normal, after being way up there. They are scratching their heads. We follow up with his peditrician in a couple of weeks... by then, if he continues his pattern, he'll be sick again. The one thing noted was unlike the peditrician they don't believe it's a virus or bacteria, simply because no one else is catching it and it's the same symptoms over and over again.

His echo cardiogram did show some minor valve abnormalities, but was still considered within normal limits. And this is something that will resolve itself as he gets older.

Everytime he gets better I keep hoping and praying that he's grown out of it or that what ever it is has left his system. He just didn't want to be sick when the baby got here and hopefully, it looks like he's going to get his wish.

That is wonderful news! I hope he continues to feel good and this healthy streak continues for you all.

[mspete]

Wondferful news! Hoping he will get his wish to be well when the baby arrives and will continue to be well. God bless

[Texmel]

Amen! Blessings and hugs to y'all!

[ibeapoet]

It is good news and a relief, not to have to worry about some of the stuff that could be wrong. Hopefully being out of school will reset his system and we can get his immune system boosted back up.

[Cpogie]

Hopefully over the summer Bryson gets some weight put on, feels terrific, and no more sickness!!

[ibeapoet]

Amen!! Carol!! I thought he was getting some allergy problems this morning (sore throat and runny nose), until he started complaining that his jaw hurt. He's cutting his first permant tooth! He's excited. He asked does this mean that my teeth will start falling out and the tooth fairy will come see me. Cute!

[Cpogie]

Amanda, that is so sweet. I use to have a tooth fairy pillow for the kids...it had a small pocket on it where you could put the money...they loved it!

[ibeapoet]

As soon as they can get the appointment made Bryson gets to see a pediatric infectious diseases spe******t. I hope they can figure it out. It's starting to wear on all of us. Bryson most of all. He's the same weight and height starting school this year as he was last year. So he didn't grow any in a year. I asked if that was normal and the doc told me that it can be when a kid has been sick. Poor thing he's the shortest in his class.

[Cpogie]

I wish I could just wave a wand and make Bryson better...I sure hope this new doctor has some idea what is wrong and how to fix it....he and you have been through alot...Hugs.

[MandMnmbr3]

Amanda, I'll be praying the new Dr will be able to figure out what's wrong with Bryson and treatment can begin. Keep your chin up hun!!

As soon as they can get the appointment made Bryson gets to see a pediatric infectious diseases spe******t. I hope they can figure it out. It's starting to wear on all of us. Bryson most of all. He's the same weight and height starting school this year as he was last year. So he didn't grow any in a year. I asked if that was normal and the doc told me that it can be when a kid has been sick. Poor thing he's the shortest in his class.

[Texmel]

Amanda, I'll be praying the new Dr will be able to figure out what's wrong with Bryson and treatment can begin. Keep your chin up hun!!

Praying with y'all!

[SSIAnkie]

I have you all in my prayers. Hope they get Bryson better soon!

[ibeapoet]

This last episode only lasted 3 days!!! Yeah!! Normally they are between 5-8 days. Also the symptoms were less severe. Maybe that means he's starting to outgrow whatever it is. Fingers crossed!

[ibeapoet]

We have an almost diagnosis. It's a type of periodic fever syndrome either PFAPA or HIDS. Leaning towards PFAPA. He should grow out of it by the time hes 10. Meanwhile he gets to start tagament (yep the heartburn med). It somehow or another increases the time between episodes. Keeping my fingers crossed that it works and that it comes back as PFAPA. If it's HIDS it's life long and the symptoms diminish over time.

[Cpogie]

That sounds like you finally got an answer!! God bless Bryson!!

[we3kings]

I'm hoping it is the lesser of the two, but thank goodness you are almost there to a diagnosis! Not knowing is one of the hardest things ever!

[SSIAnkie]

Glad to hear that you are closer to a diagnosis. Hopefully it will be the one he will outgrow. The unknown is stressful. Little Bryson is in my prayers.

[momsangel]

Glad to hear it Amanda :) love and hugs for you all

[MandMnmbr3]

Amanda, praying for your family!


This last episode only lasted 3 days!!! Yeah!! Normally they are between 5-8 days. Also the symptoms were less severe. Maybe that means he's starting to outgrow whatever it is. Fingers crossed!