Angel Sunshine's AVM Support
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...
On another note, I had to have unplanned surgery to remove my tubes and ovaries on the 29th of November which called for just over a week off work (even though the Dr said 3 to 4 weeks off) and I got my Dr to agree to release me back to work on a part time, light duties, schedule through the end of the year.
This has really taken a toll on my finances so, PLEASE, if you are able to donate anything to help us through this rough patch we really need you now more than ever. Gas cards, grocery cards, cash no matter how small it all adds up and would help us tremendously...any Feds out there that have use/lose I am still on the leave donor listing and it would be a godsend right now...
Wishing all of you a Merry Christmas, Happy Hanukkah, Festive Yule, and the very best of this holiday season....hugs and love to all!
Angel is still suffering dizzy spells and seeing black spots when she gets up and moves around much. It's been over a week now since the last big fall and concussion.
This is a bittersweet day for us. Used to be our yearly tradition to make our way to Newport to see the annual WEBN fireworks but it's not a very handicapped-friendly venue and we're afraid that the flashes could put her into a seizure and, in a crowd that size, it could get ugly really fast...don't get me wrong, I'm thankful every day that she's still here with me but I miss my sidekick. I miss our amusement park excursions, I miss going on road trips and getting lost, I miss the fireworks, the inside jokes, the silliness, the laughter, the fun...now, it seems, the only road trips we take are up to Cleveland Clinic, the only roller coaster rides are the highs of getting good medical test results and the lows of hearing "we don't know what more can be done". I understand that things constantly change but she's been in a "holding pattern" for so long now and it's wearing on both of us.
I see so many posts and pictures of friends and family going on vacation and enjoying free time together and it's hard. On one hand I'm happy for you all yet it's hard to see what we, for so long, took for granted and on the other hand I see all to clearly what has been taken away so quickly and with no seemingly advance notice.
We hug more, we say "I love you" more but everything seems centered around the next medical appointment, the next procedure. We even plan showering around those as it takes so much energy to do that, something most of us just take for granted each day.
If I had a nickel for each time Angel apologized to me for not being able to help through the move, I wouldn't be worried about how we're going to make ends meet these next few months.
I need to say a couple special Thank You's here as there are people who have helped recently that deserve recognition. Jessica, you know who you are, it was so very thoughtful and generous for you to donate and we appreciate you doing this! You may not have much to give but your donation is just as precious as anyone else's and we thank you from the bottom of our hearts. Dean, again you know who you are, you have donated so many times and what may not seem like much to you really does make a difference to us, big hugs coming your way!
The All Tails R Waggin owners and crew, this move couldn't have happened without your help and extreme generosity, not only do you make sure Bernie continues to be treated like the king he believes he is but you made sure we had people food to keep us going and gas to get me back and forth to work and Angel's appointments these last few weeks, and we've only known you just shy of a year now. This says so much about who you are, big hugs to all of you!
Thank you to my siblings who each stepped up to help throughout the move whether it was helping to pack, providing packing materials, or part of the muscle in helping move...you all did more than I could even begin to ask for and I am so thankful and grateful for your help in every way.
Luke, thank you for the awesome brake job, so glad that Angel feels safe in the car again and we still owe you (and your girlfriend) a couple good meals!
My pay checks continue to be short (retiring next year will actually be like a raise!) as having to take time off for medical tests, appointments, and watching over her after sedation and after the concussion is all leave without pay.
Angel's disability $ can't start soon enough and right now her paperwork is in one of the many boxes or bags yet to be unpacked...
Please, if you are in any way able to help us, we need you now more than ever. Whatever form you feel good about, even showing up with a home cooked meal (or carry out if your time is at a premium) or some time to spend with Angel would be an awesome contribution.
Gas cards, grocery cards, dinner (carry out) cards, or cash to help pay bills would help us so much right now.
I'm ashamed to say that it's a good thing the Ketamine infusion has been pushed to October as she needed it to happen in August but October gives me another month to try to get more hours (and more pay) to help make up for the week I'll have to take off.
If anyone reading this is a civil servant like me, I'm still on the leave donation list if you are able or know of anyone who always has use or lose, please ask them to donate to help keep us going.
Hoping the next update will have better news to share. Until then please keep Angel in your hearts and prayers, they say miracles happen every day and, after all she continues to go through, she could sure use one now!
Hugs to all and slobbery kisses from Bernie too!
It's been quite a month...
On the night of August 4th Angel suffered a mini-stroke. Her normal pain level was highly increased and covered a larger area in her head and she lost controlled use of her left/"good" side. She couldn't lift her arm or leg, had trouble answering basic questions, and could not smile (her lips would twitch and you could see how hard she was trying but no upward curve and no teeth). After quick research on the American Stroke Association's website, I demanded that she go to the ER to be evaluated.
The first ER visited took her back immediately did assessment and CT and then had her transported to OSU ER under "stroke alert level 2".
By this time a couple hours had passed and she wasn't showing any improvement yet so they did another, more detailed, CT with contrast and did the full rainbow collection of bloodwork.
They tried a couple pain relief "cocktails" and we had to stop them from trying a couple that she'd already had before with documented bad reactions (I guess sometimes in the ER they get too busy to go over the patient's history). Finally she started getting the use of the left side back, was able to smile at me with her beautiful teeth showing and no noticeable twitching and they released her around 2:30 on Friday. To add insult to injury, when they brought her discharge papers they also brought her a "work excuse" and after being up all night that was the straw that broke this Mama Camel's back and I let them know how very rude and insensitive it was for them to give a disabled person who wants nothing more than to get her life back and either return to college or find a good job and start her career but can't due to her disabilities a work excuse....really??!!
On a brighter note, we have now taken residence of our new home as of last Sunday! I still have a lot to pack and bring over from the "old" place and am hoping to get that done yet this weekend, anyone who might like to help is definitely welcome! I will be there later this evening and then again on Saturday and Sunday...the new place is so much better than where we were, the only steps she has to do are the ones into the garage (3), the deck to the back yard (again, 3) or, if we have extreme weather, into the basement for safety. It's a beautiful 3 bedroom, 2 full bath ranch with a wonderful open floorplan that she can easily use her power chair in on the days she is unsteady, has a 2-car garage, a big covered deck in the back and a nice sized fenced in yard for Bernie. It's in a much better neighborhood and we have yet to hear a gunshot in the distance (a multiple times nightly occurrence) or the multiple nightly flyovers by the police helicopters. As an added bonus, the nearest fire/EMS station is within walking distance so if she needs emergency transport it should only be a short wait.
She had her post MRI Neuro appointment yesterday and the area of radiation necrosis has stayed the same, no new lesions or reasons for concern other than the uptick in symptoms so they feel it will be safe to discontinue the Depakote (no new seizure activity) immediately! One less medication on her list and that's a good thing! They want her to start cognitive therapy on an outpatient basis and we'll base the inpatient therapy stay on the results found in the MRI scheduled for the 24th of her left knee (swelling, discoloration, and a lot of pain) in case they need to do surgery to repair a possible torn meniscus etc.
The next 5-day ketamine infusion has been pushed form "add-in" status in September to "add-in" for October due to their scheduler having someone listed for the labor day week when they won't be doing that due to the holiday so Angel is dealing with the higher amount of pain until they can get her in and let the ketamine do it's magic and reset her tolerance where she'll be at a more comfortable 5/6 instead of an 8/9 or higher on the 1-10 scale.
We've been able to make ends meet (just barely at times) but the last 2 paychecks and the upcoming paycheck next Friday were low due to having to take off for her MRI, mini-stroke, and the appointments she's had in the last couple weeks and the move, and deposits have taken every bit that I was able to save so I'm writing this not only to update you but to ask that if anyone can donate, in whatever form you're comfortable with ($, groceries, gift cards for groceries, carry-out dinner cards, gas cards, or even a bag or two of Kibbles and Bits for Bernie), it would help us so much right now. I'm still on the leave share/donation recipient list for any feds out there that might be able to help in that way...
As always, sharing is caring so please share this with anyone you think might be able to help or just post it on your wall for widest dissemination as we still haven't run across anyone with anything more (medically) to give us hope for getting her to a better level of functionality and a better quality of life.
Please continue to keep her in your thoughts and prayers and know that we appreciate the strength you give us more than mere words can express.
Big hugs to all and wet slobbery kisses from Bernie.
Three years ago today my beautiful daughter, Angel, had a stroke and lost most functional use of her (dominant) right side.
Life, as we knew it, completely changed. Things had been scary since her diagnosis of the AVM in her brain in September of 2011 (just prior to her 21st birthday in November) but we were not at all prepared for this, as if there would be any way anyone could prepare for such a traumatic event!
Upcoming appointments are as follows, please think of her and send good thoughts our way that these go well, 15 July is her scheduled follow-up with the Neurology team at OSU to go over the most pressing issues she has been dealing with over the past few months (the additional areas of pain in her head, the marked increase in aphasia, the return of the "waterfall" noise, the focal seizure activity, and the increase of dizziness and balance issues), her next imaging (Cerebral MRI under full sedation) is scheduled for August 1st (I know, it seems that it would make more sense to have the imaging first and then the appointment to follow but we take what we can get when it comes to getting an appointment with Neurology!), and the next 5-day Ketamine infusion at Cleveland Clinic is scheduled for September (exact week will be provided sometime in August).
Since my last update there have been numerous hospitalizations, all a week or less, for tendonitis flare-ups of her left Achilles and heel, for unmanageable pain due to the radiation necrosis damage and Thalamic Pain Syndrome, and the latest being to have her gall bladder removed on a Wednesday and then stones removed from her bile duct the next day.
She still falls numerous times weekly but, in her words, she "knows how to fall gracefully" so thankful for the years of gymnastics classes she took at the Rec Center when she was young!!! Unfortunately, this doesn't help much when she takes a tumble down the stairs but I am diligently searching to find a ranch style rental to move to as it's become rather dangerous for her and I'm always worried that I'll come home from work one day to her unconscious at the bottom of the stairs...
She's been fairly stable lately, trying her best to stay out of the hospital and home with her beloved Bernie! That dog truly earns his "Saint" title as he really does intuitively know when she's not very stable and either lays on top of her to keep her in bed or right next to her so that he'll keep her from falling onto the floor! You couldn't ask for a better therapy dog! He's very protective of his "Mama" and "Grammy" too!
I've been able to put in more hours at work lately and it's really nice to not have to struggle so much to pay the bills and keep food in the house without having to beg for donations and visit the food bank.
We're still having a hard time coming up with the extra $1,000 (plus) that it will take to have the lift for her powerchair installed in the car and a dear friend has been diligently trying to get information from the company that makes the lift so that he and another friend can do the install correctly and only charge for necessary parts. Still fighting this battle as it would definitely make getting out of the house so much easier for her and me!
Right now, it appears that I will have to wait another 13 1/2 months to retire with full benefits as, even though I reached my 30 year mark on March 24th of this year, I have to be 56 which won't happen until August 13th 2017...still hoping an early out offer with voluntary separation incentive pay will come my way before then as that would really make things much easier for us both!
For those of you who continue to call and stop by when you can, you have my utmost respect and neverending gratitude! This is what true friendship is, being there and never giving up when you know she wishes she could go and do like she used to but only has a limited amount of energy (look up the "spoons" story, that explains it way better than I can). Continuing to invite her in hope that one day she can say yes and have the energy to go and do if only for a little while gives her goals to look forward to even if it's just a movie and pizza night at home catching up! These are so necessary as the feeling of being all alone in this is not a burden she should carry without help. THANK YOU, you know who you are, and we love you like family!
I'm still researching and even have help on that here and there (Thank You Sis!) and have found a promising study being conducted primarily at Stanford but with an outreach also in Pittsburgh that is getting ramped up for phase 2 that I hope she might be accepted into where they implant stem cells into the brain and it has helped former stroke survivors regain mobility years after being affected by stroke. Such promising research being done and it can't happen soon enough! Will post here as soon as I get the call/e-mail that she may be accepted as a patient.
Please, if you are in a position to donate, do so in whatever form best suits you and know that we appreciate any and all donations as they do make it easier for us to keep moving in the right direction.
Those of you unable to donate financially, we understand and still need all the good thoughts, prayers, positive energy, and time shared together you can provide. Life is way too short and hard to face alone, know that even in the roughest storm we will be there for you too.
Please share this on FB, sharing is caring too!
Hugs and love to you all!
Delores, Angel, and Bernie
You are in our thoughts and prayers and will plan to see you within the next week. xoxo
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!!!
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.