Updates on my nephew (who has Leukemia)

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Updates on my nephew (who has Leukemia)

Postby Korrine » Thu Mar 29, 2012 7:29 pm

Hi guys.

I have been updating my freak out thread on RC on how Connor is doing. If you guys are interested, here's the link:

http://www.reefcentral.com/forums/showt ... ?t=2107548

I think you have to be a RC member to see the Lounge.
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Re: Updates on my nephew (who has Leukemia)

Postby Korrine » Thu Apr 12, 2012 12:59 pm

my sister's shore duty request was approved for a year. This means they won't ask her to leave for deployment. She was on sea duty, which was why she was assigned to the USS Enterprise. The Enterprise is currently operating on the other side of the world.
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Re: Updates on my nephew (who has Leukemia)

Postby Korrine » Sat May 05, 2012 11:26 pm

This little guy is doing fantastically well so far. One of the things they check at his appointments are his ANC levels or Absolute Neutrophil Count. Here is a description from marrowforums.org

Your ANC is a more accurate measure of your risk of infection than your WBC alone. Your ANC can indicate whether or not you are a candidate for specific treatments, including growth factors (also called granulocyte-colony stimulating factors or G-CSFs) such as Neupogen, Neulasta, or Granocyte, which stimulate the production of white blood cells. If you are undergoing radiation, chemotherapy, or a bone marrow or stem cell transplant, your ANC is used to measure the status of your immune system.
If your ANC is low, i.e., you do not have enough neutrophils. The more serious the neutropenia, the more important it is to avoid any possible sources of infection.

==His last one was over 2,000. 500 is when they start to really worry, so he's handling his chemo very, very well. This next phase he is getting hit HARD with chemo drugs. This is what he's getting now. It tells what days and how it's administered.

Delayed Intensification (DI)-lasts 8 weeks (56 days)
Drug How drug will be given Days
Dexamethasone By mouth 1-7, 15-21
Vincristine By needle inserted into the central line 1, 8, and 15
Doxorubicin By needle inserted into the central line 1, 8, and 15
PEG Asparaginase By needle inserted into the central line 4
Cyclophosphamide By needle inserted into the central line 29
Thioguanine By mouth 29 – 42
Cytarabine By needle inserted into the central line 29 - 32 and 36 – 39
Methotrexate By spinal tap 1 and 29
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Re: Updates on my nephew (who has Leukemia)

Postby Korrine » Tue May 08, 2012 10:52 pm

here is a pic from earlier today. She said his eyes are red from the chemo. His hair is filling in, but with this regimen we will see how long it lasts?


He doesn't like taking naps, but since this ordeal has started he occasionally asks for naptime. He took his nap at 10 am this morning and he had gotten up for the day at 7am. He had another round of chemo yesterday so that's probably why.
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Re: Updates on my nephew (who has Leukemia)

Postby Korrine » Fri May 11, 2012 2:40 pm

My sis just shared this:

We're at a low point again, Connor was in bed by 7pm and took a total of 4 hours worth of naps yesterday. He wasn't as active yesterday and is even less today. Those that know Connor know that's nothing like him. The chemo is doing what its supposed too but also taking a toll on Connor. Please keep him in your thoughts and prayers as we finish up this cycle of treatment.
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Re: Updates on my nephew (who has Leukemia)

Postby Korrine » Wed May 16, 2012 9:55 am

This past weekend he started shaking like he has the chills every once in awhile. She said it's only for maybe 2-15 seconds, but they increased in frequency so she took him to the oncologist yesterday. They are calling it a *tick* but ordered I think an EEG just to be safe. They said it couldn't be a seizure because the meds he's on would make it a more violent one. I hope they figure out what's going on.
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Updates on my nephew (who has Leukemia)

Postby pjkrentz » Wed May 16, 2012 10:53 am

I remember reading somewhere that chemo often throws off body temp generally making people much colder than normal. So this could be just shivers as the body readjusts. Hope it is nothing serious. Best wishes
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Re: Updates on my nephew (who has Leukemia)

Postby Korrine » Wed May 16, 2012 11:05 pm

I hope it isn't serious too! Thanks for the well wishes.

We are scheduled to leave to see him and my sis pretty soon (couple weeks). Getting pretty excited to see them. Hope his immunity stays up so we can bring our SD germs. If not, we don't go.
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Re: Updates on my nephew (who has Leukemia)

Postby iced98lx » Thu May 17, 2012 9:47 am

Korrine wrote:I hope it isn't serious too! Thanks for the well wishes.

We are scheduled to leave to see him and my sis pretty soon (couple weeks). Getting pretty excited to see them. Hope his immunity stays up so we can bring our SD germs. If not, we don't go.


I hope things stay good until you get to see him, sometimes a visit or other interaction with someone can make all the difference in a child's mood, and that gets important when going through Chemo.

Stay positive, I hope the little guy knocks this stuff down quickly.
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Re: Updates on my nephew (who has Leukemia)

Postby Korrine » Wed May 23, 2012 11:07 pm

Thanks iced :)

Thank God the eeg came back normal, which is fantastic!

I talked to her quite a bit yesterday and today, but didn't think to ask her about the *tick* until I went to update the thread. She didn't say if they either stayed the same or have subsided, but I'm assuming it isn't worse or she would have definitely told me.

She said he is more like his old self again. He received several chemo treatments in a short time frame and that made him tired and clingy. He was more riled and rambunctious today. His last treatment for this phase is June 1st and we are scheduled to arrive at her house on the 7th. She said it should be out of his system by then and he should be more like normal by the time we get there. His next phase won't start until the end of June.
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Re: Updates on my nephew (who has Leukemia)

Postby Pallan » Thu May 24, 2012 4:27 pm

:) Glad and happy to hear he is doing alright.. keeping you and him in our thoughts...
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Re: Updates on my nephew (who has Leukemia)

Postby Korrine » Tue Jun 05, 2012 7:24 am

soo my desktop crapped out and I don't bust out my laptop much...



Connor is doing pretty good, given the chemo he was just hit with. A week and a half ago his hemoglobin was really low so they gave him blood and that's about it. Sis says he still bruises easy. He starts a third round of chemo at the end of June. Glad he's done for now.



We are sitting in a Drury hotel in Indianpolis, In right now. Getting ready to continue our treck to see them!!!! Drove 13 hours yesterday! Only stopped for potty/gas at the same time. We restricted liquid intake on the kids and it worked out well. Wasn't sure how it would turn out since mine are so young (4, 7, 9).
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Re: Updates on my nephew (who has Leukemia)

Postby Korrine » Wed Jun 06, 2012 9:01 am

Made it Winchester around supper time yesterday. Jed's Aunt is here. Will head on to my sis's place Thursday morning. My sis is sooo excited. I think this trip will mean more to her than I'll ever know.
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Re: Updates on my nephew (who has Leukemia)

Postby Korrine » Sat Jun 09, 2012 7:54 am

He's recovery very well from his last round of treatment. He's pretty much back to his old self, but with a bald head. I have pics on my camera but none easy to throw on here. I did take a pic of my kids standing in the Atlantic Ocean yesterday.

Stole this off my sis's FB. The kids watching TV last night. You can see his poor lil bald head.

Today we are headed to North Carolina to see Digger's Dungeon!!
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Re: Updates on my nephew (who has Leukemia)

Postby Pallan » Sat Jun 09, 2012 6:16 pm

Nice to see the smile he has :) tuff little guy ..keeping you all in our thoughts and prayers
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Re: Updates on my nephew (who has Leukemia)

Postby wichers » Sat Jun 09, 2012 11:26 pm

Glad to see you are having a awesome time over there with the family. Safe travels.
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Re: Updates on my nephew (who has Leukemia)

Postby Korrine » Sun Jun 10, 2012 7:22 am

My youngest and my sister's guy both LOVE Grave Digger. It was a hit. They had a guy giving rides for $5 so we paid for everyone to get a ride! My brother came with too. When I post pics off my camera you'll see him. In total there are 8 of us.

http://www.gravedigger.com/ContentPage.aspx?id=51


We ended up adventuring further and went NC's Outter Banks.



http://www.outerbanks.org/





Today we are going to see the Naticus.



http://www.nauticus.org/exhibits/index

We are hoping to go to Busch Garden's on Tuesday!


They have the USS Wisconsin on the side of the building and you are allowed t walk around it. I've been there 2x but my hubby hasn't and since my sis isn't stationed on a ship she can't take him on hers. This will work
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Re: Updates on my nephew (who has Leukemia)

Postby Korrine » Mon Jun 11, 2012 3:45 pm

A few pics from my phone. The blue monster truck is Son uva Digger (or something like that). Apparently they have a new truck out!
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Re: Updates on my nephew (who has Leukemia)

Postby Korrine » Fri Jul 06, 2012 11:02 am

Here are a few more pics from the trip.
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Re: Updates on my nephew (who has Leukemia)

Postby Korrine » Fri Jul 06, 2012 11:16 am

And a few more. I had 800 pics from the trip! Definitely a lot to go through.
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Re: Updates on my nephew (who has Leukemia)

Postby Korrine » Sat Jul 07, 2012 2:23 pm

My sis and her ex finally finished hashing out their visitation. It's been hard on her, especially because he been so incompetent in the past. She's worried if something goes wrong when he has Connor he might not know what to do or won't do the proper thing.

She had to give the ex a 2 week time frame when she wanted him for her summer vaca portion. She has selected a few weeks in August in which she plans to come home with him. The Dr's told her it should be alright because this 3rd round of intense treatment ends at the end of July and starting in August he'll go month to month. The requirement was to have a Children's Hospital nearby and there is one in Omaha, Ne. Ex hasn't contested the out of state trip yet, so hope it stands. She needs her family. It really sucks that she's that far away.
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Re: Updates on my nephew (who has Leukemia)

Postby Korrine » Sun Jul 29, 2012 12:05 am

He goes in for a treatment this Monday and then will fly to the midwest for a family visit on Thursday. Everyone is excited to see them. Hope all goes well on Monday!
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Re: Updates on my nephew (who has Leukemia)

Postby wichers » Sun Jul 29, 2012 5:40 am

Hope all goes well with him on Monday. Safe travels for them on there visit here.
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Re: Updates on my nephew (who has Leukemia)

Postby Korrine » Tue Jul 31, 2012 8:37 pm

All is going well and they are supposed to land in Omaha on Thursday.
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Re: Updates on my nephew (who has Leukemia)

Postby Korrine » Mon Aug 06, 2012 10:16 am

All is still well!! YAY :D We were nervous about him flying because of sooo many germs. One of the stipulations of him coming this direction was there to be a Children's Hospital nearby. We have one here in SF and one in Omaha so that's good.

Carmen sent me this pic when they got on the plane last Thursday.

Sorry I havent' updated much. Went out of town Friday morning and got back midnight this morning. I bet Jed's dragging at work!
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Re: Updates on my nephew (who has Leukemia)

Postby Korrine » Tue Aug 07, 2012 12:00 pm

He's having a great time! They are coming up to see us tomorrow morning. They were coming up tonight, but last night didn't go so well. Connor was sitting on gma's walker (she's 86) and she was pushing him back and fourth. I guess the walker caught on something and fell on gma's leg cutting it to the point of needing 18 stitches. Connor is fine and gma is doing well, but sis wants to see gma again tonight before she flies out Thursday.

When she gets up here she wants to stay in a hotel with a water park and have the kids come swim.
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Re: Updates on my nephew (who has Leukemia)

Postby Korrine » Tue Aug 14, 2012 10:55 pm

Thanks everyone. They made the trip back home just fine. Had a 30 minute delay in O'Hare, not bad. However, it is bad enough with an antsy 3 year old in tow. I have a ton of pictures. I just need to go through them and then I'll share some :)



THe lil tyke is doing well. Unforuntately he goes in for another...yes another...spinal tap tomorrow. I said to my sis "already, he just had that done like a month ago". She said it's because he's beginning the next phase where he goes month to month for chemo instead of seemingly all the time. Good thing is he won't need another for 86 days.

And grandma is doing well with her gash in her leg. They had her go in on Friday to look at it. I told my gpa that if her leg gets pretty red or feels hot to the touch to get her in right away. He said they are worried about infection as well.
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Re: Updates on my nephew (who has Leukemia)

Postby Korrine » Wed Aug 15, 2012 4:17 pm

Connor did very well this morning! Annnnd his ANC was 2100, which is what an average kid usually is.



Another great thing. The guy told my sis that the Military has 3 different resorts that families are able to use while their lil ones are going through treatment and for a year after treatment is completed. There are 2 in Maryland and 1 in N Carolina. He was offered a wish, but since the parents are split (a nasty split) a trip like that won't work. Each parent has to sign off on a Make A Wish trip and both parents would want to go, but not together. This resort is a fabulous option because either parent could go with their significant other and Connor. There isn't a limit on how many times they can use it!
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Re: Updates on my nephew (who has Leukemia)

Postby isu712 » Wed Aug 15, 2012 6:56 pm

That's awesome Korrine. Hope his ANC stays there. He definitely deserves some fun time in a cool place after all this.
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Re: Updates on my nephew (who has Leukemia)

Postby Korrine » Thu Aug 16, 2012 4:35 pm

Matt, he should be fine from here on out. He has done sooo well during the grueling portion of treatment and from here on out it's only chemo 1x a month. Some oral, but he doesn't have to get poked every week.

He had soo much fun on our 3 wheeled scooter that my sis bought one for him when they got home. It's now his fav toy!
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Re: Updates on my nephew (who has Leukemia)

Postby Tangdiver » Fri Aug 17, 2012 7:17 am

cute kid love the updates, keep em coming
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Re: Updates on my nephew (who has Leukemia)

Postby Korrine » Fri Aug 17, 2012 10:53 am

will try.

Here are some pics. Including the scooter he used while here, which inspired his mom to buy that one above. This was his first tractor, 4 wheeler and horse ride.



Image



Image



Image



Image



Image



Image



Image



Image



Image



Image



Image
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Re: Updates on my nephew (who has Leukemia)

Postby iced98lx » Fri Aug 17, 2012 11:00 am

Great pictures, what a great trip of firsts!!!
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Re: Updates on my nephew (who has Leukemia)

Postby Korrine » Fri Aug 17, 2012 11:16 am

Yea, my sister was in such a rush having such a short time in SF (because they came up a day late due to gma's gash in her leg) that she almost skipped the farm. She's soooo glad she didn't skip it! Connor really had a blast. I'm trying to find other photo's from Omaha zoo, but I can't seem to find them?
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Re: Updates on my nephew (who has Leukemia)

Postby Korrine » Wed Sep 19, 2012 9:14 am

guys n gals!!! Look at his hair!!! It's growing back!



My sis's inhome nanny quit Friday...yep just up and quit. But Connor's doctor has ok'd him attending daycare. He only goes in for Chemo 1x a month, and does take an oral on Wednesdays. My sis is soo excited to get him socialized. He's pretty much been isolated since December only playing with a few other kids once in awhile. Even better, she signed him up for a structured daycare in an actual facility so they do learn things and don't just wander all over all day.



And the big important thing:



All is well and going good!!
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Re: Updates on my nephew (who has Leukemia)

Postby iced98lx » Wed Sep 19, 2012 9:32 am

Woohoo!!
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Re: Updates on my nephew (who has Leukemia)

Postby Tangdiver » Wed Sep 19, 2012 4:27 pm

sweet news korrine.

glad all is going good. Long road but uphill is great!
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Re: Updates on my nephew (who has Leukemia)

Postby black hills tj » Wed Sep 19, 2012 7:41 pm

Glad to hear he is doing well. What a strong little guy. My mom had breast cancer back in 93, and she's still going strong!
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Re: Updates on my nephew (who has Leukemia)

Postby wichers » Wed Sep 19, 2012 8:07 pm

Great to hear Korrine the hair is looking good!

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Re: Updates on my nephew (who has Leukemia)

Postby Korrine » Fri Oct 19, 2012 12:55 pm

At an appt yesterday a psych threw out ADHD and ODD. Now my sis thinks God is punishing her for having a kid. What do you say to that? She told me before she said that she didn't want an answer... He has has always been a difficult kid. They aren't medicating him, just will do weekly therapy appointments in the office.
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Re: Updates on my nephew (who has Leukemia)

Postby Tangdiver » Sat Oct 20, 2012 6:52 am

Sister needs to look at what GOD, has done for her.

Kept him alive for some reason only known to him.

I think she should take another look and see again after dust settles.

Just my thoughts, and not putting her down either.
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Re: Updates on my nephew (who has Leukemia)

Postby Korrine » Sat Oct 20, 2012 2:07 pm

yea. She is overwhelmed. I did tell her it will get better after her man is back from deployment; which is on Halloween.
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Re: Updates on my nephew (who has Leukemia)

Postby Korrine » Sun Oct 21, 2012 11:30 pm

Connor has mild pneumonia. They gave him antibiotics and sent him home for now. He's been such a healthy lil guy through all this that hopefully he can kick it quick.
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Re: Updates on my nephew (who has Leukemia)

Postby Korrine » Wed Oct 24, 2012 6:47 pm

he's pulling out of the pneumonia just fine and never needed to be hospitalized. Can be a scary thing in sick lil kids.
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Re: Updates on my nephew (who has Leukemia)

Postby Korrine » Wed Oct 24, 2012 7:01 pm

Sis's new friend. After her bike was stolen, someone was shot and murdered 6 houses down and she had a break-in at her house in a 6 week time frame (in which they stole her laptop, ipad and ipod) she decided to get a bigger dog to go with the little one.
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Re: Updates on my nephew (who has Leukemia)

Postby Korrine » Thu Nov 01, 2012 11:21 am

look he's too cute! I miss this little devil. Wish they were closer.
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Re: Updates on my nephew (who has Leukemia)

Postby Korrine » Wed Jan 02, 2013 2:33 pm

His ANC is usually 700-1200 and today is 54. They gave him a transfusion bc his hemoglobin is low and are admitting him to the hospital. Sis estimates he'll be there 2-3 days.
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Re: Updates on my nephew (who has Leukemia)

Postby Korrine » Fri Jan 04, 2013 2:50 pm

Thank god it turned out well and he progressively got better. His anc is only 250, but his fever has been gone for 36 hours so they are releasing him from the hospital.

This was him playing his DS that he just got for Christmas. It really helped pass the time for him.
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Re: Updates on my nephew (who has Leukemia)

Postby Korrine » Fri Jan 04, 2013 2:55 pm

My poor sis was just about freaking out. I'm glad she has a good boyfriend and friends out there with her.

An undiscovered infection with low her immunity caused septic shock in our mother (whom had the same Leukemia 8 years ago). She died at her routine checkup. Connor had gone in for a routine check up when his low ANC was discovered and then he spiked a fever.
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Re: Updates on my nephew (who has Leukemia)

Postby Tangdiver » Sat Jan 05, 2013 6:31 am

Keep prayers going to them.

Gotta be rough, would not know how to cope but prayers and Gods plan.
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