Updated posted by Delores Gang 6 days ago
Wanted to post a quick update here, as you may...
Wanted to post a quick update here, as you may know we are at the Ronald McDonald House in Cleveland.
Angel is scheduled for the 5-day Ketamine infusion starting at 8 tomorrow morning. We're both a bit nervous but hopeful too and we know she is in good hands here.
Please take a moment tomorrow morning to send good thoughts and positive energy to Angel as she's receiving her first day's treatment.
Thank you to our dog sitting crew, we couldn't do this without you...please make yourselves at home there :)
If anyone out there is in a financial position that enables you to donate in any way (or amount, every dollar helps and i do like quarters too:), please don't hesitate to do so, I will be off work all this week and right now it's "no work no pay" unless I get leave donations which, if received, would be a huge blessing.
Please take a brief moment and share this on your FB page, we still need the widest coverage possible as there has to be someone else out there that has dealt with something similar that may be able to offer any additional insight on this rare condition and/or the side effects the treatment has created.
Any of my dear friends/relatives in the are that are able and would like to come by "Ronald's Castle", very late afternoon (I suspect) or early evening to visit, help lift her spirits, and keep her mind from stressing over the next day's treatment, if even for a brief time any day this week, we would LOVE to see you :)
Thank you so much for all that you do, we can't make it through this without your help
Updated posted by Delores Gang 11 days ago
Another quick update... The bug Angel was...
Another quick update...
The bug Angel was fighting turned into Pneumonia and she was admitted last Tuesday through Thursday night. They put her into an isolation room where everyone (except me) had to suit up, put on gloves and wear the full face mask, including the eye shield....They pumped her full of 3 different types of antibiotic and then switched to oral antibiotic a couple days before release and she has now finished the oral round.
She's still pretty weak and has little to no appetite but is home with me and the dogs and that is the best therapy for her right now!
Got the paperwork from insurance detailing the denial for the stay at Dodd and, just as I suspected, one of the physicians put in his notes that the therapy could be done as an outpatient...so frustrating as I really was hoping they could put her into their inpatient program to get her to a better level before continuing ouptatient therapy.
Cleveland Clinic next week is still a go and I'm trying really hard to get dog sitting covered...Thank you to Jordan, Rebecca, and Jason for stepping up for some of the days but if there's anyone else local out there that would like to assist we'd really appreciate...2 mutts and a St Bernard that need fed, watered, and let out on their leads (attended) a few times a day. they will also need extra love and attention since they will be missing us :(. You can come and go as your schedule permits or you are more than welcome to stay at the house with the "beasts", whatever would be easier on you.
I was unable to work any of the last 2 weeks so, barring any leave donations, my next paycheck will be zero :( I'm trying to get a few good hours in this week (5 1/4 yesterday, and 4 hours today, hoping to keep this up through Friday) as next week will be another zero hours week due to the Cleveland Clinic procedure. If anyone out there is a Government employee and can afford to donate leave, I am listed on the Voluntary Leave Transfer Program and it would be GREATLY appreciated.
PLEASE, if you are in a good financial position to be able to afford to make a donation (no matter how big or small), don't hesitate as we really need your help to make it through this.
If you are unable to donate, we do understand and ask that you continue your prayers, healing energy, positive thoughts, and encouragement, these are priceless and extremely necessary.
If you'd like to donate through gift cards (grocery, gas, carry-out dinner, whatever) or even a home-cooked meal or short visit to give me a small break to gather my thoughts and continue my research for any additional treatment options that may have been overlooked or may still be in trial phase that might offer her hope for regaining the right side and regaining the eyesight that has been severely compromised, these are all welcome and would be appreciated more than words can express.
THANK YOU from the bottom of our hearts for all that you have already done and continue to do to help my sweet Angel, with your help we will get through this and I'd LOVE to see her dance at Brooke's wedding :)
PLEASE, if you'd take a quick minute to share this on your FB page, we'd really appreciate the additional coverage this can bring in hope that someone out there may be able to provide additional help and hope.
Love and BIG HUGS to all of you, our top-notch support network of friends and family.
Delores ("Mama G" to all Angel's friends), Angel, Bernie, Brutus, and BowWow.
Updated posted by Delores Gang 19 days ago
Update time...Angel has now started having small...
Update time...Angel has now started having small seizures, she spent a week in the hospital and they had to remove her PICC line the day of discharge as they couldn't get return on it even after 2 2hour clot buster infusions...she's scheduled to have the line put back in this Wednesday, unfortunately they can only put it back where it was as that's the only place they can find a good vein/artery.
Since coming home she's been fighting a bug and has been running a fever of 102.4 at last check. I'm loading her up on fluids and keeping the Tylenol at a 4 to 6 hour schedule and she's sleeping a lot.
We received a call from Cleveland Clinic and insurance has approved the 5 day Ketamine infusion that is scheduled for March 3 thru 7 so we'll be up in Cleveland for that week, hoping Ronald McDonald house has a room available and hoping this will work to bring her tolerance to the pain meds down.
Waiting on Dr. Mutgi's office to call with his "first available" appointment, unfortunately, he was in CA at a conference last week so his involvement with her hospitalization last week was only a phone consult with an associate back here. They believe that her Thalamus area has been damaged either by the AVM or the Radiation Necrosis. After more research, I truly believe this is the case as all the symptoms of Thalamic damage listed describe what she has been experiencing for so many months.
We are requesting another consult with Dr. Powers (Neurosurgeon) but don't know what more he can offer as he wouldn't even consider surgery before due to the location and what could be lost by going in...
We are also waiting on a consult with a Psychiatrist who deals mainly with traumatic brain injury cases, again, not sure what more they can offer as she does already see a good Psychiatrist who, at last visit, said she'd see her again in 2 months or to call if she wanted to come in sooner.
I had hoped they would get her in to Dodd again for inpatient therapy to get her to a better level before continuing with outpatient therapy but the good folks at Dodd told me that insurance declined another stay (I feel they would have covered this had it been coded correctly and tried to fight this to no avail).
One day at a time here and some days are better than others.
Thank you all for your continuing support, the kind words, and the prayers and positive energy you keep sending our way. I know my limits and truly can't do this alone!
PLEASE, we still need you, I am unable to work more than part time at best right now as she needs help for even the most basic tasks.
If you are in any position to donate in any way, we would be forever grateful for whatever you can offer. PLEASE, share this on your page for us, the more people that see this may yet get us in touch with someone who can offer her a better chance for a brighter future. Thank you and big hugs to all
Created by Delores Gang on November 8, 2012
I am Delores (on the right), Angel Sunshine's (on the left) mother and caretaker ("Momager" as she calls me). Angel was diagnosed as having an AVM on her brainstem in September of 2011. Due to the location and "eloquency" of this AVM it is inoperable. Numerous angiograms have shown that embolization is not an option as they are unable to embolize the full AVM and to only get part could cause this to go off balance and rupture and bleed on her brain which could cause seizures, stroke, and even death. She had stereotactical radiosurgery in March of this year and this caused hair loss and hot flashes and all the basic post-radiation symptoms. I, as her caretaker, have had to put my job "'on hold" mainly sice her diagnosis and at this point am lucky to be able to put in 10 to 12 hours a week. Needless to say, as a single mother, all our financial resources have been exhausted. Friends and family have helped to the extent that they have been able but we are now a month behind on rent, overdrawn at the bank, less than $20 in cash on hand and electric, phone, and all household bills adding up daily. I was able to get advanced annual and sick leave and am also on the "leave donor" program at work but all the leave that has been donated up to this time has been used. My vehicle is on the repossesion list and now my car insurance has been discontinued as I was unable to make last month's payment. I have pawned all the jewelry I had and will lose that to the pawn shop this coming weekend. We have reached our catastrophic coverage limit on insurance so, thankfully, all medical bills and prescription medications will be covered in full through the end of this year. Will I have the money for gas/transportation to get her back and forth to medical appointments etc? That remains to be seen. Her vision is extremely limited at this time due to the pressure on the occipital nerve, she blacks out multiple times daily and has even fallen down stairs multiple times due to this as she now has no advance warning feelings when a blackout is coming on.
Please, if you are in any position that you can help in any way, donate. If, however, you are reading this and are unable to help financially, send positive energy, prayers, and good thoughts her way. Thank you from the bottom of my heart...
Have Questions? Contact the organizer of this campaign now:Contact
Use Facebook to Leave a Comment
Nothing gets posted to your wall. Only your Facebook name & photo are used.
You are in our thoughts and prayers and will plan to see you within the next week. xoxo
posted by Nicole Smith 15 months ago
One more day of hyperbarics this week, off Thursday and Friday, trying to work some decent hours Friday hopefully that will work out. Please keep this circulating I want it to go around the world!!!
posted by Delores Gang 15 months ago
Thank you to all of those who have shared/kept us in your thoughts/donated. I'm at a loss of words for the outpouring of love and support from you all.
posted by Angel Sunshine 15 months ago
Recent Donations (32)
$2,700 raised by 32 people in 16 months.
6 days ago
10 days ago
1 month ago
1 month ago
2 months ago
3 months ago
3 months ago
4 months ago
5 months ago
5 months ago
1-10 of 32 donationsNext