Author Topic: About Braeden, NEW NEW info (Read 7428 times)

Esther · « **Reply #30 on:** August 19, 2008, 02:06:21 PM »

Finally screwed up my courage and called this morning at 10:00. Here's basically what she said. It's the Care Page update.

But now, this is what the LORD says—
he who created you, O Jacob,
he who formed you, O Israel:
"Fear not, for I have redeemed you;
I have summoned you by name; you are mine.
When you pass through the waters,
I will be with you;
and when you pass through the rivers,
they will not sweep over you.
When you walk through the fire,
you will not be burned;
the flames will not set you ablaze.
~ Isaiah 43:1-2

Ok, first the good news! Bone marrow AND bone scan are both clear! MANY MANY praises for that!

Our appointment with Dr. Axtell went well. We have a plan right now, but not a schedule. Here’s the scoop:

We will be doing chemo in Grand Rapids first. Braeden will have a couple of cycles of chemo, and then scans to evaluate its effect on the tumor. That will help the doctors determine how many cycles to do. Surgery to remove the tumor will fit in there somewhere, and after surgery and chemo Braeden will go to U of M for MIBG therapy, then take a maintenance drug after that. At this point, we know the what, but not really the when and how. Bub will likely have a broviac put in this week (Thursday from what we hear) and then we can begin scheduling. It looks like his chemo will be outpatient, which is good for the most part. We will keep you all posted when we get specifics.

We are all doing pretty well right now. Last weekend, I was asked how we can do this. If I couldn’t trust that God loves Braeden even more than we do, I couldn’t. But I can. :-)

We are thankful as always for all the love and support of our family and friends, and of the body of Christ who has cared so faithfully for us these many past months! THANK YOU ALL!!!

tracey_shafer · « **Reply #31 on:** August 19, 2008, 02:54:00 PM »

O please Lord keep him clear and thank you for this.
This is wonderful news Esther. Thank you for letting us know so soon. There I go again....but happy tears this time.

Ky Kim · « **Reply #32 on:** August 19, 2008, 02:57:33 PM »

I have been following this thread, but haven't known what to say. I will keep praying for him and your family. Bless your family, try to stay strong. All things are possible with GOD.

Kim

Esther · « **Reply #33 on:** August 19, 2008, 03:19:28 PM »

KIM, nobody knows what to say.....I don't know what to say. Anything that expresses what you are feeling like, "I don't have the words to say how sorry I am about ___________. Please know I'll be thinking of you/praying for you/sending good thoughts your way." should work for most situations. Once you are comfortable using those phrases, you can expand a little to make it more personal to the situation.

MY DH hates going to funerals or visiting at the funeral home because he thinks he has to say something HUGE and WONDERFUL that will make them feel better or solve the problem. I told him that it doesn't matter what he says. They probably won't remember what he says but they'll remember he said something and cared enough to come or say anything at all.

Kittyzee · « **Reply #34 on:** August 19, 2008, 05:41:59 PM »

That's so true Esther; about the funeral home thing. When my Mom and my Dad died, I remember who came to support me---and I was so hurt by the ones who never showed up at all :'( You don't have to say anything.....just being there makes a difference.

karen J · « **Reply #35 on:** August 19, 2008, 06:41:15 PM »

I have a really hard time with words. All I can say is that I'm sorry, I'm here, and if there is anything I can do to help I'll be glad to.
I'm happy the marrow & bone scans came up clean. We will continue to pray for little Braeden.

Esther · « **Reply #36 on:** August 20, 2008, 09:14:21 AM »

See Karen, perfect. You said what you thought and felt. That's all that matters. So simple and sweet.

You know the people who always seem to be able to say LOTS of stuff often don't mean it a bit. They just are good with words. So I think the people who find it difficult to say the right thing are the ones who not only want to say it but they want to help so much it strangles them.

Bartman · « **Reply #37 on:** August 20, 2008, 09:18:10 AM »

Esther - I know exactly what your husband means. It is a hardwired response from guys. Guys are usually "fixers" and when we can't fix it we don't know what to say so then want to say nothing.

I'm hoping everything turns out okay for Braeden and wish I had a fix myself, but I don't.

Bart

Esther · « **Reply #38 on:** August 20, 2008, 10:48:22 AM »

You're right Bart. I'm a fixer too but as you may have noticed, am also good with words, or at least I manage to say a lot of words. LOL. Good or not is up to you guys to decide. But not everybody can blabber away and still want to help.

Brian · « **Reply #39 on:** August 20, 2008, 12:20:09 PM »

Oh Esther, my heart just sank. I am praying for all of you!!

Esther · « **Reply #40 on:** August 20, 2008, 12:23:36 PM »

Thanks everybody. I know Brian. Even though we knew the outlook wasn't very sure, we had thought that seeing he was responding to each treatment so well that just maybe he was going to beat this thing. And of course he still may, only God knows. Sure does test a person's faith and patience.

bunny56lbc · « **Reply #41 on:** August 20, 2008, 07:30:17 PM »

Thankyou for keeping us updated , Esther .
Will keep Braeden & family in my prayer's .

bonnie

Esther · « **Reply #42 on:** August 21, 2008, 01:32:28 PM »

Dawn just called to say Braeden had the Broviac tubes inserted today and it went well. She said that they are scheduling Braeden for chemo 5 days on and then two off for two weeks outpatient and then a scan to see if the chemo is affecting the tumor. Then maybe surgery. Somewhere along the line there will be MIBG treatments at a hospital in Lansing. It is a radioactive substance that is supposed to attack the cancer and kill it. Trouble is, it being radioactive, he will be contained in a room with lead walls because he will be radioactive for a period of time. We have no idea how we/they will pull all this off with the new baby due on Sept 7. She's hoping this baby will be late so maybe they can get the chemo done before the baby comes. Then I asked what about the thing in Lansing. You can't put a 3 year old in a room by himself for much over 3 minutes, let alone days without expecting a mess and traumatizing him terribly.

tracey_shafer · « **Reply #43 on:** August 21, 2008, 03:52:23 PM »

Now I am confused, I thought he was clear? Why Is he still going through such terrible treatments if he is clear. OMG, I must have read something wrong Esther. That treatment sounds awful but kids are usually very resilient. I have not stopped praying.

Esther · « **Reply #44 on:** August 21, 2008, 05:00:50 PM »

No Tracey, there is a tumor on his adrenal gland right where it was at first. This one is .75 X 1.25" whereas the first one was softball size. But the scarey part is that it grew that quickly since the last CT scan just three months ago. Also originally the surgeon thought he had "gotten it all".

What you saw that was clear was the bone marrow aspirate (where they took a sample of the marrow) and then the body scan was clear except for the tumor they knew was there. So they are pretty sure this cancer is still contained.

She said they gave him some drug today that causes him not to remember what he experienced. I asker her if I could have some. Anyway, now they can give him anything that goes into the blood through one tube or feed him through the other tube.

Esther · « **Reply #45 on:** August 22, 2008, 03:51:44 PM »

Care Pages update by Dawn:

Happy Friday, all!

Braeden’s new broviac is in and doing well. Even though it was a very early day Thursday, it went well all things considered. His new line was placed by peds surgery, so we had our favorite surgeon, Dr. Uitvlugt, again. Braeden had some medicine to help him “relax”—read: act like a drunk—before going into the OR, then he had a mask to go to sleep (which he did really well with), so no pokes even yesterday that he was aware of. We had to change his dressing today though, it seemed to be bleeding a lot so Julie at clinic wanted me to check it and tell her what was going on. It looks fine today, so I think it was just because he was so much more active yesterday than we expected after anesthesia. They had told us Bub would be groggy yesterday—yeah, right! Even though he was sick on the way home, he still wanted to go out and ride his bike and play, and was bouncing off the walls last night. So much for drowsy! So far, he is tolerating new tubies very well, he is such a trooper!

Braeden starts chemo on Monday. So far we don’t know a whole lot of details, other than it will be outpatient every day next week. Our nurse Carrie said his roadmap isn’t even in his chart yet, but we will know more next week. It’s going to be a busy week, since it is the last week before school starts, and there is a lot to do and little time! We are a bit overwhelmed right now, but we know God is in control and He WILL work things out. This coming week, we would appreciate prayers for safe travel, our cars, finances (lots of gas!!!), and of course peace for our family. We appreciate all of you who have prayed so hard and been such an encouragement to us.

The broviac is the tubes that go through his chest wall so they don't have to be giving him injections that hurt. It's an internal IV of sorts.

Ruthie · « **Reply #46 on:** August 22, 2008, 11:45:50 PM »

Just wanted to let you know I am still praying.

Esther · « **Reply #47 on:** August 23, 2008, 06:00:26 AM »

Thanks

Krista · « **Reply #48 on:** August 23, 2008, 06:33:17 PM »

Sounds like he's being a real trooper there.. Glad to hear yesterdays procedure went well. Wish I was closer to help out more.

Brian · « **Reply #49 on:** August 27, 2008, 12:18:19 PM »

Quote from: Esther on August 21, 2008, 05:00:50 PM

She said they gave him some drug today that causes him not to remember what he experienced. I asker her if I could have some.

Esther,
Be careful what you ask for! Memory loss isn't a good thing. I'm only 40, and can't remember half of what I'm supposed to!!!!

Esther · « **Reply #50 on:** August 27, 2008, 01:18:35 PM »

Yah, you've got a point.

Dawn stopped by this morning on the way to the Chemo treatment to drop off the two older kids for three days. This is outpatient and takes about 4 hours. Evidently there is one drug that is in a capsule and has to be opened just before it is given and mixed with something like applesauce. Then there is an hour wait before the next part of the treatment. But it is potentially harmful to the unborn baby so she can't administer it at home. So that would knock off an hour away from home if she could give it.

Anyway, he looked kinda white around the gills and had a little ornery wrinkle between his eyebrows. He wouldn't even look at Grandpa or I and just shook his head "No" when his mother asked him if he wanted a drink. Grandpa is his favorite, by the way. Made me so sad.

marla · « **Reply #51 on:** August 27, 2008, 06:40:56 PM »

Esther....I'm so sorry to hear that the little guy needs to go through the chemo again brought tears to my eyes to read your posts, but at the same time very happy for him and the family to hear that the bone scan and marrow tests came back clean. Are they doing the same chemo treatment as last time or trying a different drug? I can just see the frown on his poor little face and he has every right to it, but how sad....so much for one so young to have to indure. You sound like a good solid rock for your family to lean on, I will keep you all in my prayers and you for extra strength.

Esther · « **Reply #52 on:** August 27, 2008, 06:58:02 PM »

Thanks Marla. No I think they are changing the (what do they call it) protocol----procedure. At least this time the chemo is outpatient. First they harvested his stem cells. Previously, he would be hooked to an IV 24/7 and Dawn stayed with him from Monday morning to Friday afternoon in the hospital. Then they went home until Monday and started all over again, 6 times. Then there was surgery. Then there was 6 (I think) radiation treatments. Then there was the stem cell transplant. Then there was 32 days of isolation with only hospital staff and his dad to visit. Then 70 days isolation at home.

Now they are doing 5 days of chemo and two off, 5 on, and then two weeks off I think. We are hoping the baby comes during that two week off period. I wonder if the doctor would induce labor. The baby is due at the beginning of the two week off period. I will be staying at their house while she's in the hospital because the two older ones will be in school by that time.

Somewhere along the line he will have a radioactive drug treatment at a different hospital about a 2 hour drive from their home. He will have to be isolated in a lead lined room. I don't know how that will all work out.

marla · « **Reply #53 on:** August 27, 2008, 07:51:07 PM »

Seems as that is the norm to switch it up a bit. Use to work in radiology in my younger days, it's even a challange for some adults to stay still through radiation treatments. Sounds as if it would be nice to have the baby come during the down time, but then you know how those "best laid plans" usually turn out. I'll pray for the best outcome to all this.

Jonna · « **Reply #54 on:** August 27, 2008, 09:45:47 PM »

It truly is heartbreaking to make a child go through this when I'm sure he doesn't really understand why. How difficult that must be, my heart goes out to his parents, and to you and granddad too. I agree that you are a rock Esther, it can't be easy to keep as upbeat as you do. Virtual hugs to you.

Esther · « **Reply #55 on:** August 28, 2008, 04:22:03 AM »

Marla, I think they sedate him whenever he has to have a test or something they have to stay still for, like the MRIs and Cts.

Thanks Jonna.

karen J · « **Reply #56 on:** August 28, 2008, 08:16:34 AM »

Esther, I'm so sorry for you and your entire family having to go through all this. Prayers.
Will they allow him to have toys with him during isolation? I could send you some toys... what does he like? I could send you some Legos... would keep him busy for hours. Does he like cars?

KatFish · « **Reply #57 on:** August 28, 2008, 09:09:39 AM »

Esther, is he allowed to have toys with him in isolation? I know that when I went through it, I was only allowed things that could be tossed out (magazines, etc.) Let us know (if you can) what he may / may not have in isolation.

Esther · « **Reply #58 on:** August 28, 2008, 10:25:20 AM »

I think the toys he's allowed to have are ones that they have at the hospital. They probably have been sanitized. I never thought to ask. I think that when he was isolated at home, they wiped the toys down and washed the ones in the dishwasher that they could. I know I tried to scrub down surfaces in the house and bought several bottles of different types of disinfectant stuff. They had their carpet torn out and installed laminate flooring just before he came home.

When the time comes, I'll let you guys know. Krista had mentioned having a kind of card shower on him when the time is right so I'll tell you.

But his brother and sister went off to school everyday and when they came home they scrubbed up well before doing anything. Dad did too. We didn't enter the house during that 70 days.

What I can't figure is at three years old, how they'll handle his being radioactive. But I guess it's mostly little kids who have Neuroblastoma so the medical community knows this so they must be prepared. His mom will have a new baby so will be a problem staying with Braeden. Or if she stays with him, will she have to wear protective clothing? And I don't know how long this time will be.

I'll tell you what not to do. The other night I found the Neuroblastoma Foundation website. Then I found Alex's Lemonade Stand website. Both have letters from families with children who have had or have that type of cancer. Whatever you do, don't go there or read the letters. I made the mistake of reading them all. Even though I know the high risk of this cancer, it still put an arrow in my heart. I woke up in the night and couldn't sleep.

Jerry · « **Reply #59 on:** August 28, 2008, 11:06:26 AM »

Prayers here too. Hopefully as an adult he won't hardly remember the ordeal