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RE: Cancer Support Thread - 6/16/2010 11:04:47 AM
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LibererlaFemme
Posts: 1307
Joined: 4/11/2005
From: PA, USA
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I'm sorry about the added therapy, Veronica. Glad, though, that it won't make you as sick.
And, of course, better safe than sorry.
_____________________________
><> Pam
From the rising of the sun til the sun goes down, let the name of the Lord be praised!
< < my sweet Toby {1997-2010}
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RE: Cancer Support Thread - 6/17/2010 11:25:02 PM
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wfisaac
Posts: 299
Joined: 3/18/2007
From: Tip of the Mitt
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Thank you, pink!
_____________________________
Veronica
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RE: Cancer Support Thread - 6/18/2010 7:04:37 AM
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mutinywxgirl
Posts: 4412
Joined: 4/29/2005
From: St. Petersburg, FL
Status: offline
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Here's the latest on Deegan.
Thursday, June 17, 2010 11:13 PM, EDT
Thursday already? (Well, almost Friday and probably most of you will read this on Friday! LOL) Wow! The week has flown by. I’ll try and recap without missing too much.
Let’s see- Monday afternoon Deegan had a GFR scan on his kidney, which uses a radioactive isotope of molybdenum to check kidney function because the chemo they’re considering is dosed based on how well his kidney is working. At least he did seem to be over the diarrhea he’d had since Tuesday of last week, so that was a good thing. Kyle took that first night shift, while I headed home to pack for our extended stay. We had started discussing potential paths forward a little bit but much was still undecided.
Tuesday around 4 pm, he had his biposy and they installed a Foley catheter while he was under the anesthesia. Poor little guy- he hates the cath. But it was judged very necessary as he was having trouble urinating. And then when he did go, he was not able to empty his bladder. So, we think that the tumor is interfering there. Then, when he awoke around 8 pm, he was itching like a crazy man and had raised bumps in several places. We thought it might be a reaction to the morphine he was on for his pain, so we were trying to manage the itching with Benadryl. When the Benadryl stopped working, they then tried several other allergy meds.
Wednesday his fever broke, finally! He’d had it since Thursday of last week. His temperature spiked very high (over 102, even breaking 103 F) several times, so we had to keep giving him Tylenol, and Loritab for pain, rather than the morphine. Now, this is a child who HATES to take medicines orally, so just getting him to take his meds is a 5 to 15 minute battle, every time. It leaves us parents feeling exhausted. I hate to think how the nurses feel. Then there’s the constant ichiness he’s been battling, and scratching at his skin, and just feeling miserable. The Foley is also causing some discomfort, and woe to you if you ask him to move and it pulls or pains him. Poor little man.
Today, Thursday, we had an infectious disease specialist come and look at Deegan and he was able to identify D.’s rash as herpes zoster. Poor Deegan. So, we’re treating the shingles with acyclovir. At the very least, he will stop itching and the shingles outbreak should pass quickly. Another plus is that they can monitor his kidney function through two doses of the acyclovir, before they start the chemo and so have a better handle on the different effects of the drugs.
(I wrote this part around 5 pm) I’m also trying to get some CT contrast down his throat for a baseline CT this evening. We are going to start his chemo either tonight or tomorrow and we want to be able to measure how effective it is. So far, they are still Wilm’s Tumors that we’re fighting, with favorable histology. So, two good things have happened today. One is the diagnosis of Deegan’s rash so we can start treating it and stop his itching, and two is the diagnosis and start of chemo. I am so grateful to have a plan for moving forward now! We discussed chemo options Tuesday night and were hopeful that we could start treatment soon to get him feeling better. Now it’s actually happening. Thank God that he’s here as an inpatient. It has really helped move things forward.
Timeline of treatment- so far, we’re thinking he’ll get three days of inpatient chemo and see how the tumors react to that. If he’s in less pain and can be sent home, then they will release him from the hospital. I don’t know what the timing on the next rounds of chemo will be, but we think that there will be three more after this one, and then we will see how things are progressing. The treatment options still appear to be chemo to shrink the tumors, surgery to remove them if possible, additional chemo, radiation, and perhaps some sort of really intense “consolidation” chemo to make sure we killed all the cancer. That end part is still being decided upon. I expect that since he’s got about four negative indicators, including the immediate relapse, the multiple sites of his cancer (he has four if you count the two tumors in his lungs separately- right and left upper lobes) and something which I forgot already…that his treatment will continue to evolve as we go.
So, it’s a long road ahead of us, and one which is difficult to plot and say “we’ll do this at this particular time”. I’m hoping that he’ll come through this just as strong-willed as ever, and be healthy. I’ve been blessed by generous donations of time off at work, and a very flexible team which so far has allowed me to be here where I want to be with my son, at his side, helping him through this, taking each day as we’re blessed with it. Especially this time around as it’s been SO crazy! Between the diarrhea, the fever, the shingles AND the cancer…this poor little boy. He’s handling it pretty well so far. Okay, I know this was a long one. I just couldn’t get to doing this when every time I tried to a nurse or doc would drop in. I like the feeling that he’s being well taken care of, up here! It’s a giant blessing. Good night, folks. -Joy
I forgot to say that we will be starting chemo tomorrow, Friday! Amen. Please let it be effective on the tumors, and please protect his healthy cells from the chemo. And grant us strength to support him through this, and Deegan strength to endure the treatments. Also, give the doctors and nurses wisdom and insight, in case anything does go wrong.
_____________________________
When blood and water hit the ground.
Walls we couldn't move came crashing down.
We were free and made alive.
The day true love died. The day true love died.
Lisa is happy THE ROWDIES ARE BACK!
14 (go Tony!)
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RE: Cancer Support Thread - 6/18/2010 2:27:07 PM
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IwillseekHim
Posts: 835
Joined: 5/17/2009
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Please know that I keep you all in my prayers.
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RE: Cancer Support Thread - 6/26/2010 1:45:12 AM
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mutinywxgirl
Posts: 4412
Joined: 4/29/2005
From: St. Petersburg, FL
Status: offline
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Here's another update on Deegan.
Saturday, June 26, 2010 12:25 AM, EDT
Well, it’s late at night again as I try and write an update for you. Sorry about that.
Let’s see- we’re still here at the hospital. The “how we get you out of here” plan is (I think) basically that he’s supposed to be taking some oral supplements, but hasn’t been able to keep them down very well this evening. Perhaps he took them too fast? He’s really been having trouble with anything that comes to him in a syringe. And he doesn’t like the flavors of the meds. Together, they tend to make him fight to not take it/them , then they come right back up again. Along with anything else we’d gotten him to eat. Hence, we’re still here.
Prayers, please- I’m struggling to hold onto my patience with him when he fights us on taking a medication. It’s not a matter where he has a choice, but he still tries to argue and push us away and not take the meds. I know that there are very few things right now in which he does have a choice, so for a strong willed little boy, this has to be incredibly difficult. Also, this is the 12th day we’ve been here, and the very length of this stay has been tiring. We have the incredible blessing of each other, Kyle and I, to alternate staying with Deegan here at the hospital, but like many things, it becomes difficult as we try and encourage Deegan to do what he needs to do, so that he can be released and we can go home. I’m just so grateful that he’s not sick and we’re moving toward going home. It’s just slow going.
On the good side of things- he’s back to acting like himself, so that’s a huge improvement from earlier this week (is it REALLY Friday???) He’s been able to eat and keep down some fruit- he had an orange today, half of an apple, some watermelon, and some pineapple. As well as more Gatorade, apple and orange juices for fluids. Regarding Gatorade- thank you to a certain foodservice gal who has been an absolute ANGEL in getting him Gatorade in a bottle, rather than a cup. He likes it, will drink it, and the electrolytes have been a good thing for him. That’s about it for today as I’m beat and he’s sleeping so I’ll end here.
I did want to thank the folks who have been so generous in giving- even though I’m not sure who gave what, to try and write thank you cards to all of you…we appreciate every bit of your gifts! A huge THANK YOU to both Jills- one making jam, one keeping me from getting INTO jams at work while I’m not there. (wide grin!) Thank you for all of your support and prayers for us in this time. We're certain that they have made all the difference in allowing us to get through each day.
_____________________________
When blood and water hit the ground.
Walls we couldn't move came crashing down.
We were free and made alive.
The day true love died. The day true love died.
Lisa is happy THE ROWDIES ARE BACK!
14 (go Tony!)
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RE: Cancer Support Thread - 6/26/2010 3:19:53 PM
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IwillseekHim
Posts: 835
Joined: 5/17/2009
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Praying that Deegan will soon be able to go home. Praying for his parents, too. Twelve days is a long time but hopefully he will very soon be released from the hospital.
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RE: Cancer Support Thread - 6/26/2010 9:02:03 PM
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mutinywxgirl
Posts: 4412
Joined: 4/29/2005
From: St. Petersburg, FL
Status: offline
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And I heard a few hours ago that because there is concern over his other kidney function level, he's being kept through at least Monday now. He's getting VERY antsy. Please be praying for them all.
_____________________________
When blood and water hit the ground.
Walls we couldn't move came crashing down.
We were free and made alive.
The day true love died. The day true love died.
Lisa is happy THE ROWDIES ARE BACK!
14 (go Tony!)
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RE: Cancer Support Thread - 6/27/2010 7:01:24 PM
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mutinywxgirl
Posts: 4412
Joined: 4/29/2005
From: St. Petersburg, FL
Status: offline
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It’s Joy again, with an evening update-and it’s not a rosy one.
Deegan is going to be getting IV nutrition starting tonight, and we are going to start talking about a g-tube for longer term nutrition. He’s STILL not eating, is barely drinking, is not keeping things down, and is painfully thin. He even states that he feels weak. The next rounds of chemo are not going to be any easier either, so based on what he’s going through right now, we seriously have to consider this feeding option. Deegan has also been experiencing random pains, from his head, to the back of his skull, etc. I don’t know how to help him with all this. It’s all so crazy!
Another issue regarding the feeding tube is that we have to wait for the surgeon to return from emergency leave in order to install the feeding tube. I believe it will be in his abdomen. The good news on that is it’s usually a fairly quick, easy surgery, and rarely are there complications. I don’t have anything more to add right now, so will sign off for tonight. Prayers are ALWAYS appreciated in this. We have no idea what tomorrow will bring, and it’s hard to see God’s plan in the midst of the hard stuff. -Joy
_____________________________
When blood and water hit the ground.
Walls we couldn't move came crashing down.
We were free and made alive.
The day true love died. The day true love died.
Lisa is happy THE ROWDIES ARE BACK!
14 (go Tony!)
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RE: Cancer Support Thread - 6/27/2010 7:22:19 PM
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wfisaac
Posts: 299
Joined: 3/18/2007
From: Tip of the Mitt
Status: offline
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Still lifting Deegan and his family up in prayer. Its' so frustrating to see little ones go through this. I can only imagine the helpless feeling his parents are going through. I pray God would fill their hearts with peace. And I pray that things will turn for the good for Deegan. I pray he would be cured and that he can get on with the adventures of being a little boy.
_____________________________
Veronica
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RE: Cancer Support Thread - 6/27/2010 7:26:44 PM
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blueeyedgirl2
Posts: 1707
Joined: 8/31/2008
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Veronica, I was just thinking of you today! How are you feeling?
I think my aunt starts radiation treatments this week for her breast cancer.
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RE: Cancer Support Thread - 6/27/2010 8:35:27 PM
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wfisaac
Posts: 299
Joined: 3/18/2007
From: Tip of the Mitt
Status: offline
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Hi Blue,
I will pray for your aunt as she begins her treatments. I know in the beginning there's a lot of unsettled feelings about it all. I pray she will be comforted in her heart and I pray the treatments are successful.
I'm feeling ok. I can hardly believe how physically drained I am. My biggest struggle is I know one thing that will help is to eat healthy but I just have no umph to fix anything or even go to the grocery store to get healthy stuff. It's so frustrating. I also struggle in knowing how much I should push myself in order to stay somewhat physical and when to just let myself rest.
I really can't wait for my next treatment because I want to know what the game plan will be from this point forward. I will be happy if I find out I won't need further chemo treatments but I also know the likelihood of having more is high. I just want to know so I can start to deal with it in my mind.
I really could use some prayer for this next week. I'm suppose to work a full week and some of those days will be by myself. I'm concerned about this because last week I only worked 4 days and I went home feeling so sick I had the chills.
Thanks so much for asking.
_____________________________
Veronica
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RE: Cancer Support Thread - 6/27/2010 8:55:16 PM
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blueeyedgirl2
Posts: 1707
Joined: 8/31/2008
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I'll be praying for sure! Are you still feeling supported by those close to you?
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RE: Cancer Support Thread - 6/27/2010 10:36:05 PM
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wfisaac
Posts: 299
Joined: 3/18/2007
From: Tip of the Mitt
Status: offline
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Thank you, Blue.
Yes, I do feel the support from people around me. For a while people were thinking leaving me alone through my rough days was doing me a favor but they are starting to realize that is some of the time I need the support the most. There have been some friends that I haven't seen nor heard from since this all began and I understand that some people don't know how to handle this kind of thing.
_____________________________
Veronica
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RE: Cancer Support Thread - 6/28/2010 6:36:00 AM
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LibererlaFemme
Posts: 1307
Joined: 4/11/2005
From: PA, USA
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quote:
ORIGINAL: pink..
quote:
ORIGINAL: wfisaac
There have been some friends that I haven't seen nor heard from since this all began and I understand that some people don't know how to handle this kind of thing.
Veronica, I'm glad that you are able to be understanding of that. I know it must still hurt though. I'm glad that you are putting your focus on who still is in your life. ((((hugs)))) I will keep you in my prayers as well as the others in this thread who are dealing with cancer.
Agreed ... and I'm glad some of those people have realized what you need and are coming out of the woodwork!
_____________________________
><> Pam
From the rising of the sun til the sun goes down, let the name of the Lord be praised!
< < my sweet Toby {1997-2010}
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RE: Cancer Support Thread - 6/28/2010 6:55:21 PM
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mutinywxgirl
Posts: 4412
Joined: 4/29/2005
From: St. Petersburg, FL
Status: offline
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Heard from Joy today that Deegan has to stay in the hospital at least the rest of this week, and maybe longer. He's now getting painfully thin, and mom is worrying like crazy.
Veronica - very happy that others are finally coming out!
_____________________________
When blood and water hit the ground.
Walls we couldn't move came crashing down.
We were free and made alive.
The day true love died. The day true love died.
Lisa is happy THE ROWDIES ARE BACK!
14 (go Tony!)
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RE: Cancer Support Thread - 6/28/2010 7:03:16 PM
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IwillseekHim
Posts: 835
Joined: 5/17/2009
Status: offline
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Thoughts and prayers are with Deegan and his family tonight.
Veronica, I keep you in my prayers as well.
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RE: Cancer Support Thread - 6/28/2010 7:25:36 PM
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wfisaac
Posts: 299
Joined: 3/18/2007
From: Tip of the Mitt
Status: offline
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Thanks all for the prayers. They for sure are needed. I really had a rough time at work today. I could hardly move about without feeling like I was going to pass out. I'm suppose to work a full week this week and I am thinking I'm going to have to ask if I can have Wednesday off. May be if I break it up I will be able to get through it. This is so frustrating for me.
I continue to lift all of you who are dealing with this fight as well. May God give you the strength you need and the peace you need. I know those are two things I need much of so I'm sure anyone else dealing with this does as well.
_____________________________
Veronica
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RE: Cancer Support Thread - 6/28/2010 7:30:50 PM
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IwillseekHim
Posts: 835
Joined: 5/17/2009
Status: offline
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Veronica, I'm not sure if you are aware there is an ongoing prayer thread for you on the p/p forum. Do you mind if I update them on your specific prayer requests from time to time or would you rather I not?
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RE: Cancer Support Thread - 6/28/2010 8:04:38 PM
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wfisaac
Posts: 299
Joined: 3/18/2007
From: Tip of the Mitt
Status: offline
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Wow, I didn't realize that. Feel free to, IwillseekHim. What a blessing. Thank you!
_____________________________
Veronica
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RE: Cancer Support Thread - 6/28/2010 8:57:46 PM
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IwillseekHim
Posts: 835
Joined: 5/17/2009
Status: offline
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My dear sister, we've been praying for you since March 15. 
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RE: Cancer Support Thread - 7/2/2010 10:44:58 PM
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mutinywxgirl
Posts: 4412
Joined: 4/29/2005
From: St. Petersburg, FL
Status: offline
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Friday, July 2, 2010 2:32 PM, EDT
(when did it get to be July???)
Deegan is doing okay, but he's getting a lot of IV fluids daily so we're not going to try and take him home. It would be incredibly hard to take care of him there. And he needs a blood transfusion tomorrow, so we'd just have to come right back. Sigh. The good part is that he's acting like himself most of the time, and so we're hoping that we can do his stem cell harvesting early next week (after they install a neck or groin catheter) and maybe, just maybe, (and this is only my hope, it’s not based on anything from the docs) take him home at the end of the week. At least his shingles haven't bothered him in several days, and he's starting to drink lots of Capri Sun. (Which is on sale at Wegmans, thank God! LOL) Eating, well, that is starting to improve too. As Kyle posted, he’s been eating a little bit of Ramen noodles, but mainly drinking the juice. Which for him, is fine! The extra sodium isn’t a bad thing. He’s having some Doritos right now, and I got some cheese and pepperoni into him yesterday.
Each day, he’s getting the TPN (nutrition) over a 16 hour period, plus Zosin, an antibiotic, every 6 hours, and when he’s not getting the TPN, he’s getting other fluids, with added dextrose, potassium chloride, and sodium chloride. All of these are administered via IV, so he’s constantly hooked up to a pump and has to manage his lines to keep from tripping on them or pulling them. He’s receiving an appetite stimulant also, which is helping him to feel hungry. We’re still battling some mouth sores which make eating painful. We’re not sure if they’re from the chemo, or just if he bit the side of his mouth and they didn’t heal because he didn’t have any white blood cells to heal with. There are a couple other things they are giving him but I’m forgetting what they are. I think that this floor keeps the pharmacy pretty busy! He has been getting his neupogen shots each night too (since chemo was ended for this period), so we’ve learned a few tricks for that. Like more ice equals more numb, and smaller needles are better…I think he’s down to 30 gauge from 24 or 26.
Today, he took a really long walk down the hallway and up to the Family Resource Center on the 12th floor! He wanted a new PS3 game for his room and we checked out a few movies too. He’s been yawning, so I’m expecting a nap soon. Yep, he’s fading…he even said he wanted to nap. It’s good to have my sweet little guy back. Not getting to cuddle him and hug him much is hard- he’s such a snuggler, especially at night when we read together, but he’s been drifting off watching television so we’re off our schedule.
As far as good news, he’s going to be advancing to second grade! His first grade teacher will be working closely with the new one to coordinate things. Also to help us help him catch up over the summer. I know his math needs a little practice, so I’ve been sneaking it in…even doing time-related math, which is really easy when you have a nurse saying “I’ll be back in half an hour to do [insert task]” so he needs to know when to expect them. Things like that.
We are blessed that he’s feeling pretty good, and are trying to see God’s plan in all this. I know that we will eventually look back and all of it will make sense, but for now, we’re too close to it. I’m trying to find the little things to be grateful for, like the return of “our boy” in attitude and demeanor. We can tell that he’s tired of being here, and he’s easily angered and frustrated, but that will have to be worked on. Thank God for Ruth, the counselor for assistance there. And the play therapist, and the music therapist…all help him while he’s here. Alright, I have to go. He just dumped his Capri Sun, so it’s time to change his linens. Later! -Joy
_____________________________
When blood and water hit the ground.
Walls we couldn't move came crashing down.
We were free and made alive.
The day true love died. The day true love died.
Lisa is happy THE ROWDIES ARE BACK!
14 (go Tony!)
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RE: Cancer Support Thread - 7/5/2010 7:51:07 PM
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ladioffaith
Posts: 2606
Joined: 3/31/2005
From: NE Ohio (L.A. . . Lower Akron)
Status: offline
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VERONICA! I had no idea until I happened upon this thread. Have read very little beyond the first and last pages.
Know that you all are in my prayers.
Your PSA inspires me to talk about my cancer scare. About 7 years ago I began to notice my periods were wonky. I would go months without one. Then my body would be making up for lost time. The next month it was almost pointless to wear protection.
My doctor told me that this can increase my risk of uterine cancer. She did an ultrasound and everything was negative. Shortly thereafter I was diagnosed with PCOS.
I walked into an American Cancer Society board meeting and said, "I have been a volunteer with this organization. I have heard about breast self exams, PSA tests and testicular self exams. But NEVER did ANYONE tell me that unusual periods could be a sign of cancer."
I suggested an advertising campaign with a slogan, "Know what's up with your body. Period."
So far, nobody has taken me up on it ...
_____________________________
~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*
The LORD your God is with you, he is mighty to save.
He will take great delight in you, he will quiet you with
his love, he will rejoice over you with singing." Zeph. 3:17
~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~
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