Author Topic: My oldest son just called (Read 9534 times)

jclements · « **Reply #30 on:** May 16, 2007, 01:58:42 PM »

Esther, the good news is it was caught early and there is a high success rate with treatment. Praying for the best possible recovery for your grandson!

Jonna · « **Reply #31 on:** May 16, 2007, 04:08:44 PM »

So sorry to hear this. I hope all goes well with the surgery and that it is localized.

marla · « **Reply #32 on:** May 16, 2007, 04:53:28 PM »

Esther, so sorry I will definately add the little guy to my prayer list, along with you and his family. Hopefuly it is localized to the one kidney and no further. Thanks for the link it was very imformative. Hugs to all.

Esther · « **Reply #33 on:** May 16, 2007, 05:20:24 PM »

Thanks gang for all the prayers and good wishes. I have a feeling we are in this for a long haul. We were just at the hospital and the doctors came in while we were there and are "singing a different song now." Now they are saying they just don't know. The growth is very large and they aren't doing surgery. They are hoping to shrink it with treatment. There was no more talk of losing the kidney. Unfortunately, Dawn's mother came and I could see her outside so I told Dawn her mom had come. Dawn asked me to go out and tell her to wait. So once I got out there I didn't have the courage to just turn around and go back in and leave her standing there. Pete was occupied with trying to distract Braeden so his folks could talk with the doctors so he didn't really hear anything more either and didn't understand what he did hear.

There was something about a series of tests and of course a biopsy. So I don't know if he'll be released from the hospital and then they have to keep going in for the tests or what.

While we were there a guy, (a family life specialist) came in and said he was going to shut the door. We thought maybe there was a fire drill or something. Turns out they were putting a huge sign on the door saying it was Braeden's #2 birthday. Then a bunch of people came in and he said they were the DeVos Family singers, of course they were employees. They sang Happy Birthday to him and gave him a nice Tonka jeep that pulled a trailer with a 4 wheeler on it. He thought that was cool. Then the guy asked if Eliana was his big sister. She said she was. He said that it was a special day because they just happened to have a gift for the big sisters of all the kids who had birthdays that day. So they brought her three different things. She was thrilled.

marla · « **Reply #34 on:** May 16, 2007, 06:23:32 PM »

Aren't childrens hospitals great. They are so much more family oriented. Not sure how to take your news, good on one point not the best on others. Prayers will be in full strength for all involved. Do get your rest you will need it for yourself and the comfort of your loved ones. Extra Hugs.

livetogarden · « **Reply #35 on:** May 16, 2007, 10:10:38 PM »

Praying for all of you. Braeden for his health situation and all the rest of you for comfort and peace that God is listening to all of these prayers.
Cath

Bonnie · « **Reply #36 on:** May 17, 2007, 02:01:01 PM »

It's good they want to be sure of things before they remove the kidney..

So nice of the hospital to give out the gifts.

Thinking and Praying,
Bonnie

Esther · « **Reply #37 on:** May 17, 2007, 03:17:45 PM »

The latest at about 3:30 was that he was having a biopsy, a bone scan and some other test, all about the same time. Good thing to do it all at once when he's under anesthesia I would guess. Oh and maybe they were putting in a port. The results of the tests may not come until Monday.

Bonnie · « **Reply #38 on:** May 17, 2007, 04:34:17 PM »

Please let us know Esther... I will have my Mom and Mother in Law put him on the prayer chain.

barb · « **Reply #39 on:** May 18, 2007, 06:56:03 AM »

How awful to have to wait such a long time for the results. I am praying for him. (((hugs)))

Esther · « **Reply #40 on:** May 18, 2007, 08:59:38 AM »

Thanks everyone for the good wishes and prayers. It does help to know you are all concerned and reply to my posts.

Braeden came through the biopsy and other tests OK yesterday. He has a catheter to catch the urine for 24 hours. Evidently this tumor emits something into the urine and they need to check the levels. Today he has a MRI (I think they said).

My Daughter in law is staying there 24 hours a day. There is a large chair that opens up to a bed. The nurse comes in and opens it up and puts bedding on it when someone is staying overnight.

My son and the other two kids were given a couple of days at a motel down town near the hospital. They live about a 45 minute drive away and it is a pain to have to run home to pick up Ian from school and then go back at night so they kept Ian home today and tomorrow.

maryvonne · « **Reply #41 on:** May 18, 2007, 05:05:51 PM »

Hi Esther,
It's good to hear Braeden got through the biopsy and test. I just wanted to offer some advise from my own personal experience as a mom of a very sick child. It's wonderful that your daughter in law is able to stay with Braeden through the night. I did the same thing with our son. The only problem with that is that it is very hard to get any sleep in the hospital and that on top of all the worry can lead to sleep deprivation very quickly. Mom needs to get some rest too but she may not want to leave him. Try to encourage her to take a break. A good nights sleep at home would be best but even a nice meal out or a walk would be helpful. At first my husband won't stay with our son but after I ended up exhausted he agreed to stay one night and after that we took turns and it was so much better that way. Any way just a thought that ran through my mind reading your last post.
Even though our son's medical problems were very different our situation was very similar to what your son is facing. We also live about the same distance away from our Children's hospital and we also had two other children to get to school etc. It was difficult juggling every thing and we appreciated the help we got from friends and family. It's wonderful that you are able to help them.

Maryvonne

Jane · « **Reply #42 on:** May 18, 2007, 06:58:48 PM »

Just wanted you to know I'm reading all you write. Not sure of what to say except I pray all goes well. So terrible when it's a child. Just so difficult for all of you, so sorry.

Sandye · « **Reply #43 on:** May 18, 2007, 10:30:43 PM »

Esther, my prayers will continue for Braeden.

It just breaks my heart to think of a two year old with a serious illness. Please continue to keep us updated.

Esther · « **Reply #44 on:** May 19, 2007, 02:09:58 AM »

Thanks everyone. Maryvonne, that is kinda what I had thought. I offered to come down and spend time with him so DIL could get away and also even spend the night but right now she couldn't bring herself to do that. They did leave yesterday while the tests were being performed. But I will stress the need of rest to her as she did indicate she didn' t get much sleep the other night.

Indiana Karen · « **Reply #45 on:** May 19, 2007, 08:03:23 AM »

Thinking of you and your family daily Esther, keep us posted.

Karen

Esther · « **Reply #46 on:** May 19, 2007, 06:48:35 PM »

Finally some good news, just a little----There is no evidence of cancer in the spine and no nerve damage. We will be going to visit tomorrow after church and take his birthday presents. I was originally going to make new bedroom curtains and a quilt for his birthday but now I don't have the heart to not give him toys. So I bought an old fashioned shape sorter, a wooden puzzle with little peg holders on each piece and a construction book that has 5 different truck, bulldozer, and backhoe sounds. He loves trucks etc. I thought they would give him something to do.

lori s · « **Reply #47 on:** May 20, 2007, 05:49:59 AM »

Esther,

I just wanted you to know that I am thinking of Braeden. I never realized before having my son how much love a child can bring into a family. It is terrible that a young child has to go through this but i wish all of you the best.

Lori

livetogarden · « **Reply #48 on:** May 20, 2007, 07:49:03 AM »

Esther,
We're heading off to church. Will place Braeden and your entire family on our prayer list there.
Cath

Esther · « **Reply #49 on:** May 20, 2007, 12:50:55 PM »

Thanks. It means so much to me to know you guys are praying for this little guy and the rest of us. It's hard to imagine you folks care enough about someone you've never met to do this.

We went to visit today at the hospital. He seemed quiet and a little pale. Otherwise was playing with the toys in the playroom with interest. He seemed to have a special interest in the fake food stuff.

They have removed the catheter and unplugged the IV from his port at least.

His room has a bunch of encouraging scripture verses and letters of encouragement from friends taped around. Many of the staff have told Dawn and Kevin that they enjoy coming to Braeden's room because he is such a sweet little boy and they like knowing of the many folks who have sent gifts, balloons, and letters. Kevin said he couldn't see how anyone could go through this without having the support of his church family, work family, friends, and their actual families. He said that they are not going to tell God how big their storm is. They are telling the storm how big their God is.

The tumor is about softball size and pressing on his tummy inside and crammed against his ribcage on the other side. It is laying on the adrenal gland. From what I understand, they will do chemo treatments and when and if it shrinks, at some point will do surgery to remove what they can.

nancyB · « **Reply #50 on:** May 21, 2007, 08:41:44 AM »

I am glad that you had such a good visit and that Braedon seems to be handling all of this so well. Young children seem to do so much better than the adults around them at times..

If one has not been offered, please ask for a Linus blanket for both Braedon and hopefully his sister... The blanket is his to keep and they seems to help a lot as a specila "woobie' to hold during scary moments.. If there are no Linus blankets at this hosp. let me know and I will contact someone in the pipeline...

anyone can make a blanket easily whether or not one can sew, knit or corchet or volunteer to cut squares, deliver to area hospitals or even donate fabric and other supplies...

GOD BLESS,
nancyB in MD

Esther · « **Reply #51 on:** May 21, 2007, 05:19:46 PM »

There is a support group who made up a basket for him. It has a crib size quilt in it. It is a doggie one. There is an embroidered cartooney dog in the center on one side and some words on the other but I don't remember what they were. Some of the fabrics were the Dalmations, one was doggie footprints, and one was bones. Then the others were mostly plain colors or simple designs that went well with the colors. Then there was a bravery bracelet or necklace. I don't exactly get the concept but it has beads that spell the name and then when they have a procedure, they get another bead to add to it. I doubt he gets the idea much. There was a bunch of other things in the basket too.

I talked to his dad for a while tonight and more good news. The bone scan didn't indicate any cancer in the bones. Evidently the marrow test is more difinitive and still has to be done. He said they came back to his room after getting coffee during the bone scan and there was a note on his laptop telling them to look in their food basket. There was an envelope with $283 in it collected from their Sunday School class. There are extra expenses of course with having to drive more + food for them while they are at the hospital.

He is going to go to work tomorrow after getting Ian off to school. I live a short distance from his work so he is dropping Eliana off to stay with me.

This tumor is a strange thing. It can take different routes which need different treatments. Sometimes it goes from cancer to being benign and they don't know what causes it, when it happens. Evidently the body knows it is a foreign object and the immune system is trying to get rid of it and that is what causes some of the symptoms. That is why Braeden was losing his balance I guess. He said that getting rid of the cancer would prove difficult but getting the immune system to stop trying to get rid of the tumor would be the hard part and might not ever be right.

Another quote from my son: God doesn't give us comfort to make us feel better. He gives us comfort so we can learn to comfort others.

marla · « **Reply #52 on:** May 21, 2007, 06:43:50 PM »

Esther, I'm glad there are some positives coming to play, prayers will continue. I love the quote and have placed it with my list of best ones.

Celia · « **Reply #53 on:** May 22, 2007, 05:42:17 AM »

I am so sorry to hear of your grandson's condition, I hadn't been reading the Chit Chat, but I knew something was wrong when you weren't posting on the pond stuff. Then I came across this. So sorry, and you and your family are in my prayers also.

-Greg- · « **Reply #54 on:** May 22, 2007, 07:24:17 AM »

Esther, Braeden, and all of your family our in our prayers as well.

Greg

joeyb5980 · « **Reply #55 on:** May 22, 2007, 08:52:49 AM »

Esther, please know that Braeden is still in my prayers, as is the entire family. God bless you all. It sounds like the hospital he is in is a wonderful one at least.

Esther · « **Reply #56 on:** May 22, 2007, 12:04:34 PM »

Kevin just dropped Eliana off and said that a doctor told them last night that they will be starting Chemo today. He said that they need to treat this very agressively. Poor Kevin was struck afresh with the immensity of what is happening. It sickened him to think of these toxic things being put into his little son. There was one doctor who kept calling it benign so I think the kids latched on to it that it wasn't really cancer. So to me that indicates that the cancer is rather advanced. He told them they will have to go to another state at some point, where there is a specialist in this type of tumor to be evaluated and possibly treated. I spent yesterday morning surfing the web reading what I could find about Neuroblastoma and learned more than I wanted to know. There are 4 stages and from what I could tell with what little I know, it is at least stage two.

Braeden may go home Sunday but they must not take him where he will be around potential germs or contagion. He will be getting one chemo treatment every three weeks for three months. After that he may go for more evaluation out of state and/or the surgical removal of what they can get. Then there may be radiation.

At 9 the phone rings and it is a lady from Ian's Middle school. He says he's sick. There seems to be a lot of flu going around she said. His dad let him not go to school Thursday and Friday so they could be together. Maybe he grew to like not going to school. LOL. It took an hour of driving to get there and Ellie slept all the way, thankfully. I couldn't get through to Kevin because he was at the hospital where another test was being done on Braeden. So I left him a message that I was getting his son from school. We had to stop at the house to get overnight stuff etc and then another stop at Ken's to drop off stuff for a school project and then the bank. So by the time we got home it was 1 and I was hungry. I make peanutbutter and jelly and guess what, the sick one ate two slices of bread with P & J and then didn't turn down a fudgesicle. LOL. I told him that we'd have to get up awfully early for me to get him to school tomorrow.

marla · « **Reply #57 on:** May 22, 2007, 07:30:05 PM »

Could be Ian has a bit of stress himself, I know my stomach can get all knotty when I'm stressed. Must be hard for the whole family. Prayers for all of you, thanks for the updates, take care of yourself it will be a long road yet.

Esther · « **Reply #58 on:** May 23, 2007, 04:12:19 AM »

Yes Marla, that is what I figured about Ian. His dad was the same way when he was that age. He's back to school today.

The doctors started Chemo on Braeden last night.

barb · « **Reply #59 on:** May 23, 2007, 11:12:47 AM »

I've heard so many positive outcomes Esther, and stage 2 is still early. I hope the little guy tolerates the chemo well. I'm still praying for him.