Well so far everything thing that they have ran test on have come back with nothing. They did say that some kids can get what is called post radiation, where they sleep all day get fevers and get sick to there stomach it usually lasts 14 -17 days but they have to rule everything out in order for it to be that. We are still awaiting viral test to come back either today or tomorrow, hasnt had a fever since yesterday. So if we go home this week and he runs another fever we still have to come back up here to make sure that its nothing, very frustrating that we dont know exactly what it is and if it is this post radiation there is not much we can do but wait it out.

Bryson has been up a little more today but still sleepy and not eating he has although been drinking more than usual which is great. We hate seeing him like this because well he has never been like this even through chemo last year. Pray for Bryson to get better quick. Thank you all!!

Steph, Tim and Bryson

Well being at home was nice but we are now back at TCH. All day Saturday Bryson was kinda being sleepy, I chalked it up to previous day getting his PICC line in and then getting home and him crawling around. Well about 8PM I checked his temp and sure enough he had a fever, so we had to come back up here we got our bags and headed up here. We signed in about 9PM they had us in an ER room and there we were until 4AM Sunday morning.
We all slept until 12PM yesterday but Bryson pretty much slept all day and he never does that even when he isnt feeling well.

The doc came in this morning and said that nothing wasnt growing that they will wait and see if anything does, we said what if nothing grows he said we will see. Well we are getting pretty fed up with all this for the past 3 weeks this has been happening and we need answers and we need them now. He should not be running fevers for no reason, plus sleep all day long doesnt make sense to us. Please pray that we find what is going on with our little man and that its a quick fix so we can be home again.

Thank you all,
Stephanie, TIm and BRyson

Well we got to go home yesterday around 4PM and we were all happy. We got home and Bryson went straight into his room playing with all his toys. I made him dinner and told him to come here so I could put him in his high chair he is at my feet he lays flat oon his stomach and is rubbing the carpet and kicking his feet did that like three times, crazy kid. He then ate not a whole lot but enough so glad he is at least eating something.

Then around 6:15PM the nurse with home healthcare came and showed us how to set up the TPN, his IV meds and all that stuff alot of things to do but it has to be done. We are hoping that when we go to clinic on Monday morning they will go ahead and cancel the TPN but we will see. He has to take 6 meds 2 a day and its not like an adult where they can take one right after another we have to give a little of each slowly, time consuming but he needs them to help with what he is going through.

We have to be back at clinic Mondays, Weds and Fri every week until they cut us down to two days and then to one. So a lot of back and forth during the week but at least we are home. Thank you all for the prayers and support we are beyond thankful!!

With love,

Stephanie, Tim and Bryson

Bryson is doing great no fevers and seems to be feeling so much better.  Tomorrow they will be placing his new PIC line and then we may go home, if we get everything worked out with home health care.  We are thankful to God, he has been here in this journey and continues to be. .  We seen a rainbow the other day and a couple of my friends said that when you see a rainbow it means Gods promises, that day we got results back from the BM aspiration, biopsy and spinal they all came back showing NO CANCER, how blessed are we truly.

Blessed is the word for the day.  There are many things that we should be blessed about.  Our son at the age of 2 has had a life full of many things that as his parent would never thought he would have to face. Yet he faces everyday as if nothing like this is going on, yes I say this many times and I will continue he simply amazes us the times that we are hurting for he he sits there and takes it all.  As a parent watching your child in pain, getting poked, running fevers at anytime, being put on oxygen, taken to the ICU, taking  5 meds by mouth twice a day and thats not counting the meds via IV, being stuck in a hospital months at a time, having no contact with kids his age, not seeing family for weeks at a time. I could go on but I am sure you get it, it does make me sad and mad that he has had to work to live since he was 9 months old. 

There is and never be any worst feeling then hearing the words, your child has cancer but through this 1 1/2 journey things in life appear much more clear, you truly find out what the truly important things in life are and you learn to let go of the unnecessary things that were deemed important.  You learn to give thanks to all those who have been there by your side, the people that take time out of their day to let us know that our son is in their thoughts and prayers. You learn to tell the ones that you love how much you love them.  We have been shown so much love and support throughout Brysons journey and we thank you all for it all, your support has helped us in more ways than one, so please continue those prayers.

 

With love,

Stephanie, Tim and Bryson

Today is day 50 in the hospital and day 38 post transplant. Im not sure what is going on but Bryson has yet another fever and this mama and daddy wants to know what is the problem so tomorrow we will be talking to the doctors and see what can be done. So he starts on antibiotics again and we wait. Its beyond frustrating to not know what is going on with your child plus we aren't in the comfort of our home which we miss...

Stephanie, Tim and Bryson

Well Bryson spiked fevers all day Tuesday, Wednesday since then no fevers, they did cultures on his port and nothing has grown. We went down Wednesday to get a chest xray and it came back with nothing, yesterday he was sent to get a CT scan it came back with nothing from his neck down but the doctor today said that today it showed some things in his sinuses which they believe is a sinus infection. They are starting him a different antibiotic to target that and if no fevers over the weekend then crossing our fingers we get to go home Monday.

Today Bryson had his BM aspiration, Bm biopsy and Spinal. We should get results next week. HE did great a little cranky and tired afterward but nothing out of the ordinary although we have never had to go to PACU for that in patient except for the very first time he was diagnosed so he is used to waking up and us leaving in the car so when we came back to the room he was like I thought we were going home, soon enough.

If you purchased shirts they should be ready this next week and will be calling you or sending them out.

We want to thank you all for the prayers and continued support!!! Praying that our next post is from home thank you all!!

With love,

Stephanie, Tim and Bryson

Well this morning Bryson spiked yet another fever, so we will not being going home until they know what is going on. They took cultures today so we wait and see if anything grows. Yes it is beyond frustrating to hear news that you are going home and then the next day he runs a fever but at least it happened why we are here then at home and having to come back. We just want to know what is going on with him and make sure that he is 100% better before we leave.

Please pray that we get good results and get to go home soon.

With love,
Stephanie, Tim and Bryson

Well the doctors informed us today that we will be going home tomorrow and we are soo happy. We will have to continue to IV medicines at home so we will be busy with that and coming back Wed and Fri for his appts. They also want to try and do a BM aspiration and spinal tap tomorrow, they will let us know tomorrow if we can do it tomorrow or if it will be outpatient.

Bryson has been in a wonderful mood our wonderful friend Carey came up to visit on Saturday and brought goodies, then today Grammie and Aunt Kami came in from out of state to visit and he was happy to see them.

We want to thank you all for everything from the prayers to letting us know that you think about Bryson and us daily it means so much to have so many people supporting us during this time so thank you all!!

With love,
Stephanie, Tim and Bryson

Well we were suppose to go home yesterday but as they were getting all the discharge stuff going Bryson spiked a fever of 102. So I sit here at the hospital today and yes a huge bummer but after a year and a half of dealing with all we have had to deal with we are pretty use to things like this. They took blood cultures and we found out today that he has a line infection in his PIC line which thats what we didn't want prior to getting it due to all the line infections that we had to deal with in the past. So they will continue the antibiotics and blood cultures and if by the 10th they can't get rid of it the line will have to come out, nothing new in our book. We really dont want him to have another one put in but there is only so much you can do with his portacath, so we will wait and see on the 10th. He hasn't ran a fever since this morning which means the antibiotics are doing their job, so we will see.

Bryson slept most of the day yesterday but today you can tell that he is feeling much better. He had Papa and Grandma Ruthie come up on Sunday and gifts from Grammie, aunt Kami and uncle JR. Then today Grandma came up to visit him. His movie of the week is Toy Story 2, even has his shirt on. No we are not home where we soo want to be but another bump in the road and like I tell myself so many times it could be worse and we are thankful they caught it before we left and are taking care of the problem.

Thank you all for all the prayers and continued support!! Please keep a fellow TCH friend and his family in your prayers too Jonathan O'Malley!

With love,
Steph, Tim and Bryson