Author Topic: My oldest son just called (Read 9500 times)

Oceanbum · « **Reply #60 on:** May 23, 2007, 12:40:18 PM »

Esther, I am so sorry to hear the news. I hadn't read this until today. I had been so busy with what I thought were really important every day things that seem so trivial now. I will definitely keep you, your little guy and the entire family in my thoughts and prayers. Keep us posted as you can.

Pondpuppy · « **Reply #61 on:** May 23, 2007, 03:16:58 PM »

Esther, I am been lurking for sometime now. Trying to get to know the posters. You all are such a loving and caring group of people. Please know I am praying for Braeden. and your family. Hospitals are scarey places for childlren, and what he is going through is hard on adults. The amazing thing is children have wonderful spirits and are real troopers when it comes to cancer treatments. We could all take a lesson from them.

Carol

Shae · « **Reply #62 on:** May 23, 2007, 04:54:28 PM »

Esther, I just read this post too. I'm bad about forgetting about the other forums on here. I am so sorry to hear about Braedon. I'll be keeping all of you in my thoughts and prayers.

Esther · « **Reply #63 on:** May 23, 2007, 06:01:21 PM »

Thanks everybody. LISTEN TO THIS

Kevin and Dawn got the results of the latest test called a MIBG. Radioactive isotopes are injected into his body and it shows up any Neuroblastoma there. I don't know why they don't do it right away but they didn't. Anyway, there was no evidence of it's having spread so that confirms the other tests that say it wasn't in his spine or bones.

The Chemo was started last night and Kevin said that he was a bear today. He had no idea if it was because of the treatment or if he is just sick of being pushed, pulled, poked, and stuck every three hours. Part of the symptoms of the Neuroblastoma is that of a irritable person who doesn't sleep regularly. And that is him. He has hardly slept through the night----EVER. He can be sunny and all smiles one minute and then orneryer than ever. Just so different from the other two and my kids. This cancer thing gives the explanation, oddly enough.

PTL. (Praise the Lord.)

Oh and they found out there was a financial support group somewhere that will assist in paying the massive expenses that may occur, over and above insurance. That was a tremendous relief too.

maryvonne · « **Reply #64 on:** May 23, 2007, 06:13:00 PM »

Hi Esther,
I'm happy to hear the cancer hasn't spread. That's a good thing. Sorry to hear Braeden is feeling badly. It's so hard for little ones when they don't understand what is happening to them. I hope the chemo does it job and he starts to recuperate.

Maryvonne

Esther · « **Reply #65 on:** May 23, 2007, 07:09:39 PM »

Guess I should say that this Chemo is the first of several treatments spread over the course of 3 months during which he will not be taken to church or shopping so as not to expose him to potential infections etc. Then if the Chemo is successful in shrinking the Neuroblastoma tumor, they will try to surgically remove what is left. Then there may be radiation, just in case. After that, I don't know what the treatment is to get the immune system functioning correctly or if it just kicks in by itself.

livetogarden · « **Reply #66 on:** May 23, 2007, 07:15:40 PM »

Esther,
It sounds like all the prayers have been working. God is awesome, isn't He??? I will keep all of you on my prayer list.
Cath

Ky Kim · « **Reply #67 on:** May 23, 2007, 09:36:20 PM »

Still praying for him and you and his family. May God reach down and heal him.

Kim

Shae · « **Reply #68 on:** May 24, 2007, 05:08:28 AM »

Praise the Lord indeed Esther! I'm so happy to hear the cancer has not spread. Bless his heart, I can't blame him for being cranky. Combined with his illness, he's got to be scared and doesn't understand why all this stuff is happening to him. Keeping y'all in my thoughts and prayers.

barb · « **Reply #69 on:** May 24, 2007, 10:01:20 AM »

Well, that is some good news about it not spreading!! I am still praying for him every day.

joeyb5980 · « **Reply #70 on:** May 24, 2007, 10:15:30 AM »

FANTASTIC NEWS!!

Esther · « **Reply #71 on:** May 25, 2007, 04:32:14 PM »

I have not seen Braeden since Sunday but went to the hospital and sat with Dawn for a couple of hours today.

Braeden is part way through his Chemo. I think it'll be done in the night. There are several meds being given. He is so sick and just hard to see and hear. He slept most of the time and didn't want his mommy to even move him. Previously he was cooperative with the blood pressure cuff etc but now he doesn't want anybody to touch him, talk to him or even look at him. He has thrown up a little but not much. It just broke my heart to hear the lethargic cry and see his head wobble around like he didn't have the energy to even hold up his head.

The doctor came in while I was there and I asked him if he could see any evidence of change yet. He said that is is softer and seems smaller already. I hope that is a good sign. He said that Braeden can go home Sunday.

Dawn will have to learn to handle the port and give him shots. Evidently there are some meds that work best given in different types of tissue, instead of directly put into the bloodstream. He will have to use a portable IV too. It straps on to his body. That way they don't have to worry about getting the fluids into him. IF he feels like it he'll be able to go outside and play in the sandbox even. I was surprised at that. They said that if Dawn puts a t-shirt on him inside out, that has a pocket, the port tubes can be coiled up in the pocket against his skin. I could put pockets on the inside of shirts for him too. We will be able to visit him but have to be very careful of illness.

Their pastor said that they could train 3-4 women to take care of Braeden and then use his office as a nursery for Braeden alone. They would bring his toys from home. That way maybe Dawn could get to church every Sunday if she wanted to. But still people would be wanting to come up to him and talk to him. I don't know if that would work or not. I guess it could be announced that people should not get near him and just bring him in to the office and leave, it might work.

Ky Kim · « **Reply #72 on:** May 26, 2007, 10:10:14 AM »

I would be scared to do that Esther. I remember when my boys were babies and still sickly and not taking them many places because of there immunity. We went to limited places for the year after they were home. They had many specialist and Justin had so many problems with his lungs. The risk just didn't outway getting out of the house. It was tough, but it was for the best. If I had to do it all over again, I would.

Kim

Esther · « **Reply #73 on:** May 26, 2007, 12:08:19 PM »

I know Kim. I would think it would be better if say one person could be trained to take care of him and come to stay with him at their home whenever he needed it. But also knowing Dawn, I doubt she'll much want to leave him with someone. So we'll see what happens.

barb · « **Reply #74 on:** May 26, 2007, 02:04:43 PM »

Poor little guy. I keep picturing this happening to my 3 year old, it brings tears to my eyes. I hope Braedon gets through this sick part quickly, it's unbearable to see little ones suffering.

Kittyzee · « **Reply #75 on:** May 26, 2007, 05:02:35 PM »

Gosh Esther, what an unimaginable saga you and your poor family are enduring...I haven't posted until now, but have been reading and praying for you all. At times like this words fall short, just know that we are there with you.

SueSTx · « **Reply #76 on:** May 26, 2007, 07:59:44 PM »

I'm so sorry that this is happening to your little grandson and his family. I'm at a loss for words. I will keep you and your family in my prayers also.

Esther · « **Reply #77 on:** May 27, 2007, 12:01:35 PM »

Braeden is headed home to his own little bed as I type. They thought for a while this morning he was sick and the nurse said his liver enzymes were elevated so thought it was Pancreatitis. But maybe it wasn't anything much. I didn't ask for the whole story, should have I guess.

So your prayers are still appreciated as Dawn will have to give him shots and clean the port every day and attach the portable IV to it to make sure he's getting adequate fluid and nourishment. Also for his older brother and sister. I hope they don't get jealous of all the attention Braeden is sure to get. And also for Braeden's daddy as he struggles to fill in the gaps for everyone while holding up his responsibilities at his job. Fortunately he is a producer for a Christian radio show called Walk in the Word and does most of his job on the computer. So he can do his work from home some of the time.

Teresa · « **Reply #78 on:** May 28, 2007, 08:57:48 PM »

Esther, I've been praying for Braedon and his family (including you). I just wanted to say that I know a wonderful young lady (she's all of 5 1/2 now) who went thru this horror and have come out the other side. She was completely bald for a while, but now has a beautiful head of curls and a charming (if fiesty) personality to go with it. I'll keep praying for all concerned - may it go as well for you as it did for my little friend . . .

Esther · « **Reply #79 on:** May 29, 2007, 04:43:35 AM »

Thanks Teresa. I have read up on this problem on several websites online. I think his chances of survival are very good seeing they don't seem to think it has spread yet. But it's still scarey for us all to think of the possibilities.

Viv · « **Reply #80 on:** May 30, 2007, 01:55:41 AM »

I'm not sure how I missed this Esther, I'll be thinking of the little guy.

Esther · « **Reply #81 on:** June 02, 2007, 07:52:54 PM »

I have Ian and Eliana for a few days. Tomorrow Braeden will go to our local children's hospital for a bunch of tests and then his momma and daddy will take him to Springfield Illinois where he has an appointment Monday, there with a specialist who deals with problems with immune systems. If I haven't already said so, evidently the cancer isn't so much the threat as getting his immune system back functioning correctly. Sometimes the treatment works and sometime it doesn't. There can be a life time of devasting after affects if it isn't corrected and quickly. Kevin was surfing the net today reading all he could find about this IS stuff. He read that it can affect maybe 1 in 100,000 people and for different reasons. One little girl's IS was thrown for a loop by a simple cold. They got it turned around and then when she got another cold, they weren't able to ever get the treatment to work. I won't tell you the results, it's so disheartening.

He was struggling emotionally telling me this stuff. It's not easy for them. Dumb thing to say, huh? Anyway, pray for a safe trip for them, ease of having the tests run, and comfort for the little guy. He has had good days and then days of vomiting and discomfort. Today Kevin shaved his head because they didn't want to deal with the shock of his hair falling out. So his big brother got a really short haircut too. And I gave my DH, his namesake his summer shaved head "do" tonight.

barb · « **Reply #82 on:** June 04, 2007, 09:16:04 AM »

I have been wondering about Braedon. I hope they can get his immune system back up and running. It sounds very scary, I had never heard of such a thing before. And what a great idea about all the haircuts!!

Thank you for the update, Esther.