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Re: Please pray for Coleman
Nov 17, 2008 11:19 PM
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I know how hard it is to stay still for so long in an MRI. Coleman is a very brave boy to be able to do it. Lots of hugs and prayers for Coleman and Team Larson.
--
Live life to the fullest! Life is too short to have regrets. Live like there is no tomorrow. Laugh like there is no sorrow. Love as if you haven't been hurt before!
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Re: Please pray for Coleman
Nov 17, 2008 7:44 PM
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Yeah, Runner, I've had a number of MRIs myself, so I know that it's no fun. Fortunately for me, I'm okay with it being closed in around me. But at least twice I was recovering from a cold, and I was worried I would start coughing and mess it up, which thank God, I didn't...
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Re: Please pray for Coleman
Nov 17, 2008 5:00 PM
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You're right, Coonhound. Those MRI's can take a very long time & you must be very, very still. Coleman is very mature and patient for such a little guy.
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Let God be your first resource, not your last resort.
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Re: Please pray for Coleman
Nov 17, 2008 2:30 AM
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Thanks everyone for the updates on Coleman. Such a rollercoaster of emotions - devestation, discouragement, seeking hope for a new treatment. Coleman has been, and will continue to be, in my prayers.
I was just thinking about the post of how good he does in the MRI...I know some grown-ups who cannot be in an MRI AT ALL, they can barely do the open MRIs. So I think it's quite remarkable that this little boy does so well.
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Re: Please pray for Coleman
Nov 14, 2008 11:28 PM
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> Hi there
>
> Coleman will be starting a new drug tonite. Please
> pray that it does the job. Here is the latest post
> from Peggy
>
> We met with Dr. Gilheeney today, and he couldn’t have
> been any more patient in answering our questions. He
> is very caring in wanting what’s best for Coleman. We
> discussed several options, one being this new study
> that is opening, and after talking we decided that
> with Coleman’s counts, and him being so young, (it’s
> a phase I study and only one other patient here is on
> it- but it’s a teenager) this wasn’t going to be the
> best choice for Coleman. His body has just been beat
> up so much in the past two years that it has a hard
> time bouncing back.
>
> But Dr. Gilheeney like us, believes in NEV-VA DIV UP
> so he had several other options that were many of the
> same ones we had emailed him. We finally decided to
> go with a drug combination called metronomic therapy
> with antiogenic drugs…if your’re interested here is a
> page that explains it further…
>
> Click to view article
> The Anti-Angiogenic Basis of Metronomic Chemotherapy
>
> basically the theory is to slow blood supply to the
> tumors and keep the cells from dividing…
> Coleman will receive about 5 pills a day-
>
> this regiment is all oral AND the best part, we can
> do it at HOME. IF- and this is a big IF- we can find
> an oncologist willing to work with Dr. Gilheeney and
> help us out with blood counts, and keeping a check on
> Coleman. Which means I am going to have to do some
> calling on Monday to see if hopefully we can find an
> oncologist in either Des Moines or Iowa City willing
> to take Coleman as a patient. We’ll be doing a lot of
> praying over this.
>
> They do want us to stay here through next week to
> keep an eye on Coleman in case there are any
> reactions to any of these drugs. This will give me
> some time to contact oncologists back home.
>
> Coleman just wants to go home….he wants to go
> shopping at Target….He wants to pick out an I-POD and
> talked extensively to the nurse about it today. He
> says that listening to all his favorite songs makes
> him feel better. He’s been making me write a list of
> his songs and keeps adding to it. It’s quite the
> list! I told him that would be a great birthday
> present and he said, “noooo, I tan’t wait for my
> birfday to det it, so wet’s juss det it a witta bit
> early okay mommy?” It will be on our list of things
> to do first when we get home.
>
> Oh and guess when I agreed to this….right before he
> got a finger poke today!  LOTS of tears. He just
> hates those so much, but they give a more accurate
> measure of counts, so they wanted it done this way
> today. His counts didn’t look too bad. His platelets
> were right at 100,000.
> The whole time he was getting this done, Caden was
> playing Wii bowling and says he can’t wait until his
> birthday either! I don’t know who was having more
> fun at it, him or Scott!
>
> We have to head back to the pharmacy in about a half
> hour to pick up all the new meds and will start them
> tonight. I’m feeling better- at least we’ll have
> something in there fighting.
>
> --
> Formally itsmemietos
> Go green with vaccines
> one child is to many
Itsme. I hope and pray that the new drug works for Coleman, He is such a brave boy. Hugs and prayers for Team Larson!
--
Live life to the fullest! Life is too short to have regrets. Live like there is no tomorrow. Laugh like there is no sorrow. Love as if you haven't been hurt before!
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Re: Please pray for Coleman
Nov 14, 2008 5:42 PM
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Hi there
Coleman will be starting a new drug tonite. Please pray that it does the job. Here is the latest post from Peggy
We met with Dr. Gilheeney today, and he couldn’t have been any more patient in answering our questions. He is very caring in wanting what’s best for Coleman. We discussed several options, one being this new study that is opening, and after talking we decided that with Coleman’s counts, and him being so young, (it’s a phase I study and only one other patient here is on it- but it’s a teenager) this wasn’t going to be the best choice for Coleman. His body has just been beat up so much in the past two years that it has a hard time bouncing back.
But Dr. Gilheeney like us, believes in NEV-VA DIV UP so he had several other options that were many of the same ones we had emailed him. We finally decided to go with a drug combination called metronomic therapy with antiogenic drugs…if your’re interested here is a page that explains it further…
Click to view article
The Anti-Angiogenic Basis of Metronomic Chemotherapy
basically the theory is to slow blood supply to the tumors and keep the cells from dividing…
Coleman will receive about 5 pills a day-
this regiment is all oral AND the best part, we can do it at HOME. IF- and this is a big IF- we can find an oncologist willing to work with Dr. Gilheeney and help us out with blood counts, and keeping a check on Coleman. Which means I am going to have to do some calling on Monday to see if hopefully we can find an oncologist in either Des Moines or Iowa City willing to take Coleman as a patient. We’ll be doing a lot of praying over this.
They do want us to stay here through next week to keep an eye on Coleman in case there are any reactions to any of these drugs. This will give me some time to contact oncologists back home.
Coleman just wants to go home….he wants to go shopping at Target….He wants to pick out an I-POD and talked extensively to the nurse about it today. He says that listening to all his favorite songs makes him feel better. He’s been making me write a list of his songs and keeps adding to it. It’s quite the list! I told him that would be a great birthday present and he said, “noooo, I tan’t wait for my birfday to det it, so wet’s juss det it a witta bit early okay mommy?” It will be on our list of things to do first when we get home.
Oh and guess when I agreed to this….right before he got a finger poke today! LOTS of tears. He just hates those so much, but they give a more accurate measure of counts, so they wanted it done this way today. His counts didn’t look too bad. His platelets were right at 100,000.
The whole time he was getting this done, Caden was playing Wii bowling and says he can’t wait until his birthday either! I don’t know who was having more fun at it, him or Scott!
We have to head back to the pharmacy in about a half hour to pick up all the new meds and will start them tonight. I’m feeling better- at least we’ll have something in there fighting.
--
Formally itsmemietos
Go green with vaccines
one child is to many
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Re: Please pray for Coleman
Nov 13, 2008 7:26 PM
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Hugs for Coleman and Team Larson! They are in my thoughts and prayers.
--
Live life to the fullest! Life is too short to have regrets. Live like there is no tomorrow. Laugh like there is no sorrow. Love as if you haven't been hurt before!
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Re: Please pray for Coleman
Nov 12, 2008 10:39 PM
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Hi Itsme... Glad to hear that Coleman is hanging in there... He's such a brave little guy. Thanks for the update... I've been busy lately, but he was always in my thoughts.
--
AKA: KEKA11, katdog, Kekainui
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Re: Please pray for Coleman
Nov 12, 2008 8:46 PM
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Hugs Glitters
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It is not how much time you contribute to something, it is what you contribute!
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Re: Please pray for Coleman
Nov 11, 2008 9:56 PM
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> There is better news today the meds that Coleman is
> taking is helping with his balance. Tomorrow will be
> another big and emotional day. Team Larson went to
> see the Rockettes at the Radio City Music Hall.
> Caden is in love. Here is some of the latest post
> t from Peggy.
>
> I’m happy to say the Decadron Coleman got yesterday
> (and continues to take here at the house) has helped
> some with his coordination problems. By no means is
> he close to 100%, but at least we don’t have to hold
> his hand everywhere he goes, and he can get around by
> himself. THANK YOU GOD!!! He seems much happier
> today-especially when he found out he didn’t have any
> dr. appointments! After yesterday, he needed a
> break.
>
> So we’re giving him that day of rest, and lying low
> today…before we head back into battle tomorrow. We’ll
> meet in the morning again to go over options.
> I know some of my updates lately seem like they’re
> all over the place…it’s because there are four of us
> in one room, and I rarely finish typing a sentence
> without a “hey mommy???” “MOMMY? MOMMMMMY????” I went
> back and read some of the last updates and had to ask
> “WHAT?!?” a few times, so bear with me!
>
> Saturday afternoon, we headed to Radio City Music
> Hall where a VERY generous carepage friend got us
> AMAZING tickets to the Christmas Spectacular! Jackie,
> thank you SO very much. I wish you could have seen
> the boys’ faces. We absolutely LOVED the show…Caden
> is in LOVE with the Rockettes!
>
> --
> Formally itsmemietos
> Go green with vaccines
> one child is to many
Thank you for the update itsme. I am glad to hear that Coleman is doing better. It warms the heart when someone does something special for someone, especially for Team Larson! I am keeping Coleman and Team Larson in my thoughts and prayers.
--
Live life to the fullest! Life is too short to have regrets. Live like there is no tomorrow. Laugh like there is no sorrow. Love as if you haven't been hurt before!
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Re: Please pray for Coleman
Nov 11, 2008 7:10 PM
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Hey itsme. Thanks for the update. I logged onto the carepages website, so I now get the updates. It's amazing what this little guy and his family has been through. I am also amazed at the generosity of those who got them the tickets! People really can be angels when you need them.
--
If you think education is expensive, try ignorance.
Coco
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Re: Please pray for Coleman
Nov 11, 2008 6:51 PM
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There is better news today the meds that Coleman is taking is helping with his balance. Tomorrow will be another big and emotional day. Team Larson went to see the Rockettes at the Radio City Music Hall. Caden is in love. Here is some of the latest post from Peggy.
I’m happy to say the Decadron Coleman got yesterday (and continues to take here at the house) has helped some with his coordination problems. By no means is he close to 100%, but at least we don’t have to hold his hand everywhere he goes, and he can get around by himself. THANK YOU GOD!!! He seems much happier today-especially when he found out he didn’t have any dr. appointments! After yesterday, he needed a break.
So we’re giving him that day of rest, and lying low today…before we head back into battle tomorrow. We’ll meet in the morning again to go over options.
I know some of my updates lately seem like they’re all over the place…it’s because there are four of us in one room, and I rarely finish typing a sentence without a “hey mommy???” “MOMMY? MOMMMMMY????” I went back and read some of the last updates and had to ask “WHAT?!?” a few times, so bear with me!
Saturday afternoon, we headed to Radio City Music Hall where a VERY generous carepage friend got us AMAZING tickets to the Christmas Spectacular! Jackie, thank you SO very much. I wish you could have seen the boys’ faces. We absolutely LOVED the show…Caden is in LOVE with the Rockettes!
--
Formally itsmemietos
Go green with vaccines
one child is to many
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Re: Please pray for Coleman
Nov 10, 2008 10:08 PM
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Itsme I will be glad to help you out here. This is really tough guys and prayers and more prayers are needed.
Little Coleman had a long long day to day as itsme said he had the shaking again. Bless his little heart Peggy was going to help him with his drawing/color but he refuses and wants to do it on his own even tho it is a huge task.
Here is part of the update and please don't let any not so good news keep you from reading or praying. It is hard to hear about it, but it is them and so many others like them that are experiencing it.
His MRI from last week showed that his ventricles were quite large which they were concerned with. I asked about talking to a dr. about the oral pill study we're hoping to get him started on. The dr said the problem they were working on today definitely "trumped" that, and we needed to get it figured out first, then we would discuss treatment options.
After the dose of decadron, we headed to the E.E.G. Coleman did NOT like the gel they use to stick the electrodes on his head. There were quite a few tears during this...so I hope the test was accurate. We won't get any results until tomorrow.
They sent us back to clinic, where a neurologist came and accessed Coleman's omaya for the first time...a needle was stuck in his head- Coleman actually handled it pretty well. I thought CADEN was going to faint! His face was horrible. I wished we wouldn't have had him in there for that part. He came over to the bed and said, "Pweeze let my bruver be okay." Poor Caden- he had a long, hard day of waiting too.
They drained some fluid out of Coleman's omaya, thinking that maybe there was a problem there- everything checked out okay.
They talked about admitting Coleman tonight, but he was crying that he "wanted outta here!" so they sent us back to the house with a prescription of steroids and a number to call if we should have any problems, and we should get him to urgent care right away.
If not, call in tomorrow and come Wed to talk to the doctor about options. The dr. in passing did mention that he didn't think Coleman's counts are going to hold his own, so the pill study may not be going to work out, but they are looking at a couple of other things. This is very frustrating as I feel we are again wasting time! I want SOME kind of treatment! I trust in God's timing- He has it under control, even if no one else seems to yet.
So a recap- Cman's day...
one finger poke,
one catscan
one port access
one infusion
one E.E.G.
one omaya access
one bouncy brother trying his best to sit still and be supportive and entertaining for an almost ten hour day. TWO exhausted parents.
Yes, we're exhausted and frustrated, but hanging on to HOPE and always standing on FAITH. Thank you for the continued prayers! I know I've heard others say they don't read a carepage when it gets too sad, and I understand that, but you've been faithful in standing by us, UPS AND DOWNS, and have always helped us through...for that we're forever grateful.
And WOW, I haven't read all the messages yet, but please know that we will, and we appreciate them so very much!
We're going to get a bite to eat and unwind...I'll do another update later- we really did have a great weekend. We're taking one day at a time...and appreciating those good times oh so much & thanking GOD for every moment.
Blessings to you all,
Team Larson
That is some brave little boy that Coleman is. Caden is a champ isn't he? This family is to be admired for their strength and to Peggy good for you for standing up and saying NO I want answers now and to speak to his doctors.
Prayers will continue and I ask all to please continue your prayers. It only takes a moment.
--
It is not how much time you contribute to something, it is what you contribute!
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Re: Please pray for Coleman
Nov 10, 2008 10:05 PM
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> I'm going to make a short post right now. Coleman
> and Team Larson had another rough day at the doc's
> today. Coleman's hands are shaking worse and he is
> unsteady and falling down when he walks.
>
> Please GOD give Team Larson the strength to keep
> fighting this evil monster that has attacked
> Coleman.
>
> IAM if you want to add more please do.
>
> --
> Formally itsmemietos
> Go green with vaccines
> one child is to many
I will keep Coleman and Team Larson in my prayers and thoughts. I pray that he gets better and that he doesn't have to go through this. I will pray for even more strength for Team Larson.
--
Live life to the fullest! Life is too short to have regrets. Live like there is no tomorrow. Laugh like there is no sorrow. Love as if you haven't been hurt before!
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Re: Please pray for Coleman
Nov 10, 2008 9:46 PM
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I'm going to make a short post right now. Coleman and Team Larson had another rough day at the doc's today. Coleman's hands are shaking worse and he is unsteady and falling down when he walks.
Please GOD give Team Larson the strength to keep fighting this evil monster that has attacked Coleman.
IAM if you want to add more please do.
--
Formally itsmemietos
Go green with vaccines
one child is to many
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