Update time! Relax, get the beverage of your choice, and be prepared to be amazed!!!
A major hurdle has been crossed as of this past Monday!!!
Angel had her 3 year, post radiation, Cerebral Angiogram on Monday and it showed that the AVM is now gone!!!!
This is awesome news and, to top that off, the blood clot(s) in her left arm are now to the point of no longer being a threat!
It's taken a few days for this wonderful news to really take on the meaning and be accepted as real!!!
This has been a long, hard, three plus years for Angel (and me) and the hurdles she has had to face along the way have really been hard to pass but no longer having the "ticking time bombs" of the unresolved AVM and the blood clot(s) hanging over her head is quite a relief :)!
Yes, she still has a long way to go to either learn how to accept and live with the deficiences that the Radiation Necrosis and Stroke of July 2013 caused or continue to struggle in the fight to retrain the brain and, possibly, regain some of what she has lost. Of course you should know by now that she is a fighter and is not ready to accept that this is how it's going to be, I am so proud of her and constantly amazed by her take on things and the resilience she has shown throughout this medical nightmare.
The Neurosurgeon feels hopeful that, with intensive long term therapyPhysical and Occupational again) she may yet regain functional use of her right side. He also repeats that "brain injuries can take many years to overcome" and her youth is definitely in her favor as her brain is still developing (until the age of 25 or so, they say).
Looking back over the last three plus years of struggles has given me reason to pause (if only for a brief time) and reflect on the obstacles she has faced head-on and has overcome...the radiation burn to her ear and the extreme Nystagmis that the 60 Hyperbaric Oxygen treatments (at 1 1/2 to 2 hours each!), THANK YOU Drs Katz (Neuro- Opthamologist) and Kaide (head of hyperbarics at OSU Main) made possible and healed the ear burn with very little damage even detectable now and brought the Nystagmis level down quite a bit. Add in to that the successful surgery performed in the beginning of October to stop her eyes from straying (again, THANK YOU Dr Katz).
The first, 6 month long (and it was long and hard to accept) stay in a Nursing Home for intensive, 6 days a week, Physical and Occupational therapy (THANK YOU Villa Angela for the many caring Nurses, Assistants, and extremely caring Therapists).
The Radiation Necrosis which could only be arrested (before doing any more damage) by the Chemotherapy which the Insurance company had denied at first (THANK YOU Dr. Mutgi for taking this head-on and getting Insurance to reverse the denial). Without the expertise shown and realizing the urgency of the situation on 3 seperate occasions to have her hospitalized before more extensive damage and possible fatality could occur, there is no doubt that things could have been so much uglier...
The loss (even though the Dr said it was unlikely to happen) and eventual regrowth of hair that she's still fighting to keep due to the latent effects of the Radiation (which can continue to work up to 5 years past the initial treatment). THANK YOU to all who assisted in getting wigs and hats to keep her beautiful head warm throughout this unpleasant time!
Yes, we've still got quite a road ahead and additional obstacles yet to overcome while attempting to "retrain" her brain. Lots more therapy yet to come :(
The second, 5-day Ketamine infusion which was, tentatively, scheduled for March of 2015 has been (thanks to a cancellation and THANK YOU to Dr. Cheng at the Cleveland Clinic) now scheduled for 17 through 21 November and I'm sure that Dr. Cheng will have her scheduled for another to follow in 6 months. I'm hoping and praying that this will bring her pain medication tolerance back down to where the prescribed meds will be effective again. On that note, I ask that you look up and read about "Thalamic Pain Syndrome" as her Neurosurgeon (Dr. Powers) says is quite likely in her case due to the extensive damage to the Thalamus area of her brain.
It has been (and I expect will continue to be for a while yet) quite a struggle to say the very least but with such a "Dream Team" of medical professionals and the additional "Dream Team" of well wishers, prayer givers, friends and family (sometimes the lines blur a bit here) and even kind strangers we've encountered along the way she has, against the odds, made it this far and there is no stopping her now!!!
PLEASE...we still need your help to make it through so if you are in a position to donate, in any way you can, to help us keep this pace up and continue reaching for brighter days it would be be greatly appreciated.
I will continue to post updates and beg for donations to keep us going for as long as it takes to get my sweet Angel's life back closer to what it was before this medical nightmare.
BIG HUGS to all of you, our caring support network, we can't do this without your help!
Delores, Angel, and the "boys" who are wagging their tails in approval and respect
Time for another update!
Angel is still healing from the surgery on her eyes, the redness gets lighter each day that passes and she is now on a taper down of the eye drops, 3 times a day this week 2 times a day next week and then once a day for the following week. The eyes are no longer straying and, hopefully, she'll see better as they continue to heal.
She is also recovering from Bronchitis and at the home visit from her Dr on Monday morning he said that her lungs sounded clear!!! YAY!!!
I am still trying to get in more hours at work but, with the scheduled appointments I have to work around, it's difficult to say the least. :(
No cancellations yet at the Cleveland Clinic but I continue to call once a week to check the status and hope that Tina (the procedure scheduler) looks forward to my call each week, I try to be upbeat, friendly, and polite no matter what kind of day I'm having and hope this brings a smile to her day each time I call.
We're getting nervous about the Angiogram scheduled for November 3rd and hoping that all will go well and it will be truly outpatient as it's supposed to be. We're also hoping that, if the radiation has picked up again, there is no more necrosis going on in her brain or that if they do see something that there will be a way to take care of it.
She's losing hair again, either from the radiation or a latent effect of the Chemotherapy, and this weighs on her way too much along with the weight she gained from the steroids and lack of use on her right side makes it harder for her to do any type of exercise routine on a daily basis. :(
Her Dr has put in an order for outpatient therapy, we think this will be better than home therapy which can be rather limited. I'm awaiting scheduling on that.
PLEASE, if you are in a position to be able to donate to help keep us going, we need you more than ever right now and every little bit helps so if you have any "extra" $ please help us if you can.
Fellow Civil Servants, I'm still on the approved leave share listing, if you can spare even an hour of leave it would help us tremendously.
We still need a ramp or lift for transport of the power wheelchair and if anyone can help with this it would benefit her more than I can put into words.
These last 3 years have been the hardest time for both of us and we truly appreciate all that you have done to help us through this nightmare.
I still continue to research to see if there is anything more out there that would benefit her but am not finding anything more (yet!). I keep trying and we will not give up on finding a cure!
Remember, it costs nothing to share this on your FB page and you doing this may bring the "miracle" we've been patiently awaiting :)
Big Hugs to all and Thank You in advance to those I know will share this.
If, for whatever reason, you aren't a sharer on FB we still need your help in whatever form you are able and appreciate all the good healing thoughts and positive energy and prayers more than words can express.
Angel had eye surgery on Monday, it was supposed to be a quick outpatient procedure but they had a hard time waking her after and her oxygen level was really low so they ended up admittimg her overnight to keep an eye on her. She was released Tuesday afternoon and her power wheelchair has been delivered so she will, hopefully, be able to get out more now.
Her pain level has been high since the surgery but the eyes are less red each day that passes.
I'm calling Cleveland Clinic once a week now to check for any cancellation to get the 5-day Ketamine infusion but she's still scheduled for March of next year (no cancellations yet).
Prior to the eye surgery she had spent another week at the hospital due to the achilles tendonitis/bursitis flare up on her left foot/ankle which made it impossible for her to put any weight on the "good" leg. Thankfully that has eased and she's home with Bernie, where she belongs.
That week in the hospital sure took a toll on my paycheck for this period, hoping to see more hours in the next but was off Monday, Tuesday, and Thursday of this week. Hoping that my 4-hour day today is enough to get holiday pay on Monday...she has her follow-up with the Neuro Opthamologist on Tuesday, the eyes are now staying straight but improvement on her sight may take a bit longer as the healing progresses.
The next (scheduled) procedure will be her Angiogram on November 3rd and I'm hoping that the Neurosurgeon will have some good news or, if not, additional treatment options to get her to a better level. She's been complaining of the burning embers/lava feeling in her head and I'm hoping that the radiation necrosis hasn't picked up again.
This has been so difficult, 3 years in and she's still having to fight every day :(
PLEASE, if you can, donate in any form you feel comfortable with...gas cards, groceries, cleaning supplies, dinner gift cards...all of these would be a huge help. If you are a fellow Federal Employee and can donate leave, I'm still on the approved list for this and it would help tremendously if you could spare even an hour.
Those of you who are local and can come by to visit, PLEASE do as she could sure use her friends around her right now, just get in touch with me and we'll set up a time that fits in your busy schedules.
Thank you to all who have donated, called to check up on us, sent positive vibes and healing energy, and kept her in your prayers, we can't do this without your help...
Remember, it costs nothing to share this on your FB page and the more people that see this the higher chances of someone seeing it that could help not only with donations but possibly additional medical knowledge/resources that we haven't found yet.
Big hugs to all of you from me and Angel and wagging tails from Bernie, Brutus, and Bow Wow :)
Update time!!! I know this one's way overdue...
Angel was hospitalized (again), a "direct admit" from her Primary Care Physician on September 12th and released on September 19th. Her left foot/heel/ankle flared up again and she was in a tremendous amount of pain and could not put any weight on it, this being her "good side" made it impossible for her to be cared for at home so she was admitted to get the pain under control (elevation and ice packs) and get some therapy while inpatient. She truly needs a break here, this has gone on far too long with very little improvement :(
So glad she's back home again, more work for me but less worrying as her bedroom is just across the hall from mine and I like being able to check on her often.
Unfortunately I was only able to get only a small amount of time in at work while she was hospitalized as I needed to be there with her to provide details to the resident(s) and Attending Physicians, I need to get cloned so that I can be in multiple places at a time!!!
We are awaiting approval for coverage of the power chair from the Insurance company, per my conversation with the Insurance rep today, they expect a decision to be made by September 30th. The church has provided 2 ramps to put together to get the chair in the front door now I just need to get a ramp to get it in and out of my vehicle. Her friend, Andrew, has said that if I can get the materials he will custom make one for her!!! Such a wonderful young man, he came by a couple weeks ago to try to jump her car and get it running again but it appears we need to get a new battery. The cheapest I found was $99 and some change at Wal-Mart. If I can get some decent hours in at work this pay period (just started today) then maybe I can find a way to afford the ramp materials and a new battery.
I am still hoping to hear from Cleveland Clinic soon that they have a cancellation and can get her in for another 5 day Ketamine infusion sooner than next July. Her pain med tolerance is at such a high level now that her normal 6 to 7 rating has jumped to 7 to 8 (sometimes 9) out of 10 with 10 being excrutiating.
Every day is a struggle but I will continue pushing forward and trying to get her a better quality of life is my top priority right now.
Her NeuroSurgeon has scheduled an Angiogram for November 3rd to definitively see how the AVM is doing (shrinking etc) and, hopefully, get a better look at the damage caused by the Radiation Necrosis. I'm hoping that, once he sees where she's at medically, he may have something more to offer to help her regain some of the functionality she lost on the right side from the Necrosis and the stroke July 8th 2013.
Still hoping there may be "early outs" offered before the end of the year. I've gotten my estimates from Personnel and would definitely make more than I'm taking home now!
Things have really built up over these past few years and I have scheduled an appointment with a Psychiatrist for this Wednesday afternoon for my mental health. Too much time is being spent on "autopilot" and I'm losing and forgetting things lately. I'll see what his take is on this whole messed up situation and if there is anything he can offer to help me get through this without crying every day.
PLEASE, if you are in a position that you can donate cash, gift cards, groceries, cleaning supplies or even your time...we need you now more than ever and every little bit helps us keep going.
Also, if you are local, and can come for a visit to help lift our spirits we would both appreciate seeing your smiling faces! Help me to help give her a better quality of life PLEASE!!!
As always, it costs nothing to share this on your FB page and you could be the one who helps put us in touch with someone who can really help her.
THANK YOU to those who take the time to call or text to check up on us and every contribution (in whatever form) truly has made a difference. We are forever grateful for all you have done.
Big hugs from me and Angel and wagging tails from Bernie, Bow Wow, and Brutus.
The trip to Cleveland Clinic was successful, Dr. Cheng agrees that another 5 day Ketamine infusion would definitely increase her quality of life right now and he said that when she gets scheduled and comes in for the procedure to have them put her on the list for a 3rd at that time. I'm hoping that they can find a way to get this scheduled before the end of the year although I overheard that the wait list for this procedure is now at a year and a half...
The first appointment at the Wheelchair Clinic went well but they will be putting her in for a full blown electric wheelchair rather than an easily transportable scooter...hoping that they have a way for me to get my car equipped (will need a small trailer to transport) as we are so close to broke right now and I just submitted my timesheet for the last 2 weeks ang got a measly 19 hours total. I'm still on the leave share list if anyone out ther is a civil servant and has any to spare or knows of anyone that might be willing to donate leave to cover some of the missing hours. We would be forever grateful.
I wanted to take a brief moment here to say THANK YOU to everyone reading this and passing it on or sharing Angel's story. We are so thankful and grateful for all that you have done so far and all that you continue to do to help us make it through this. We could not have made it this far without your help and continued support in every way.
We go back to the Wheelchair Clinic again Monday morning, glad they're making this a priority but nervous about the hurdles that i have to go through to get this and all it entails (ramp for the front door, trailer etc), not sure how I can make this all happen but will do whatever I can to overcome any obstacles as this will help to bring her quality of life up a notch and every little bit we can do I will do my best to make happen.
She's still falling at least once a day either from the right foot/ankle rolling (due to the lack of sensation/use of that leg she doesn't feel it happening) or the eyesight issues (multiple images, blurriness, straying eyes) or a combination of everything she goes down. Thankfully she has only received bruises from the falls (everyone knock wood here).
PLEASE, if you are able to donate in any way shape or form, we need you now more than ever...
Remember, it costs nothing to share this on your FB page and YOU may just be the one who puts us in touch with someone who is able to help or even point us in another direction to get her a better chance at a decent life.
BIG HUGS to all of you, we love you and appreciate all that you continue to do to help.
Delores ("Mama G" to some of you)
This update is long overdue and I apologize for that, it's hard sometimes to type these out as, once I see the words in print I truly have to face and accept them...
The imaging was done and they have upgraded her condition to "stable"...no change (good or bad).
Angel is still on the blood thinner for the clots in her left arm and the tendonitis is bothering her in the left foot/leg due to her overuse of that side making up for the lack of functional use on the right side, such an ongoing battle...
She has Occupational Therapy (OT) and Physical Therapy (PT) once a week for each right now as two times was too much and she ended up in the hospital.
She has glasses on order and I'm hoping they will come in before the end of the weekend so that she can see if they will help the eyesight issues while the brain continues to heal and possibly "rewire" to overcome the areas that were affected by the radiation necrosis.
Her Primary Care Dr did his home visit last Monday and was able to meet and make friends with Bernie. He knew that Bernie is a St Bernard but said that he never expected him to be so big! It was a good visit and he has put her in for an appointment at OSU's "Wheelchair Clinic" this Thursday afternoon to get the process started to get her a power chair. He also had the Social Worker from his office come by yesterday afternoon to discuss what services there are out ther that she is eligible for. She filled out paperwork for Medicaid and also for a "Waiver Program" that helps to pay for home care here in OH to try to keep people like her out of Nursing Homes and receive the care needed at home.
Unfortunately there is a 6 month waiting list on the second but I'm thankful that she was able to put Angel in for this.
I need to find/make the time to reapply for Disability for her (again) and hope to get that done online before the end of the weekend.
We're headed back to Cleveland Clinic tomorrow for an appointment with Dr. Cheng in Pain Management to see if he is willing to do another 5 day Ketamine Infusion to bring the pain meds' tolerance down and to, hopefully, help the pain meds to bring her level down below her normal 6 or 7 (out of 10 with 10 the highest). Please send good thoughts her way for that to go well and him to be able to schedule this before the end of the year so it's fully covered by insurance...
She has been falling quite a bit lately (at least once a day) due to the right foot and ankle rolling and due to the eyesight issues. I'm thankful that she hasn't hurt herself and am so nervous leaving her home alone to get in whatever hours I can at work around the scheduled appointments, therapy, and Nurse home visits.
For those of you who are local, if you can find time in your busy schedules to come by for a short visit, she (and I) would really appreciate that as any time someone takes the time to do that it really brightens her spirits more than words can express and we both miss all your smiling faces...Please call or message me as Angel rarely answers her phone anymore and there is a delay in her response to any messages you may send as it is difficult for her to see to read the messages on her phone a lot of times and responding is just as difficult but I would be thrilled to coordinate with your schedule(s) to find a time that works.
It continues to be quite a struggle to make ends meet so, if you are in any position to be able to donate (in any way...groceries, gift cards for gas/groceries, meals or restaurant gift cards, even cash to help pay bills, etc) we would truly appreciate your generosity and no amount is too small. Also, still looking for fundraising ideas/suggestions to help so, please keep us in your thoughts and share any suggestions and ideas you may have.
As always, it doesn't cost a thing to "share" this on your FB page and you could be the one that connects us to someone who may be able to offer more to get her quality of life to a better level. I keep researching and hoping to stumble across something more but have found nothing yet.
Big hugs to all and wet, slobbery kisses from Brutus, Bow Wow, and Bernie.
Time for another update!
Angel has been home almost 2 weeks now, no hospital intervention needed (please knock wood for us :)
I followed the Neurologist's advice and called an Internal Medicine Specialist to set up an appointment Monday and they luckily had a cancellation for this past Tuesday with Dr. Schamuss..this was a godsend as he's only in the office 1 day a week and devotes the other 4 days to making house calls!!! Her next appointment with him is set for July and will be at home, he said he's looking forward to meeting Bernie! He agreed with her Neurologist that she's retaining water and immediately called in a diuretic. They did a blood check for her level of blood thinner and it was high so he told us to skip that night's dosage and then go to a lower dosage (4 mg a day which he also called in). He put her on an antibiotic/steroid combination of ear drops as she's fighting a slight infection in her right ear and put in orders for a Home health care team.
The Nurse visited yesterday and was extremely thorough and very nice and she has concurred and put in orders for home Physical and Occupational Therapy, hopefully on Saturdays so I won't have to juggle with my work schedule too much.
Last paycheck (for 2 weeks) was a measly 335 and this paycheck (for the past 2 weeks) was another (hopefully the last) small $385...any Feds out there that can donate leave, I'm still on the list as an approved recipient.
Cable and internet has been shut off so she's not very happy with me right now as that's her only form of entertainment even though her eyesight is bad...
I was able to pay rent and electric thanks to a dear friend sending me a check but will only be able to pay rent and half the water bill this pay which will leave only a small amount for gas etc. Hoping to be able to get in to the food bank very soon as the cupboards/fridge/freezer are all getting pretty bare...
Thankfully I've been able to put in more hours this week, hate to leave her alone for so long at a time but I have no other choice right now. Hoping next week will go well and I will finally see a fairly decent paycheck in 2 weeks...one day at a time.
The next imaging (MRI/MRA with contrast) is scheduled for July 7th under full sedation, hoping she won't need to be seen in the ER prior to this.
We're looking forward to her June 20th appointments with the Optometrist and Neuro Opthamologist and hoping they're able to prescribe glasses/eye exercises/therapy to help her vision deficiencies.
She has to go in next Tuesday for her next blood test to check the blood thinner levels, again, hoping that goes well also.
Her pain level has been at a constant 6 or 7 out of 10 which, to her, is the best she can hope for right now, even on the pain meds.
She goes back to her Pain Management Specialist on the 19th and I'm sure he'll be pleased to know that she's finally home and hasn't needed hospital intervention since I've brought her home...that's more than we can say for the time spent at the Nursing Home as they had to send her to the hospital too many times while she was under their care.
The left arm (with the blood clots) is still quite sore but tolerable and we're hoping that the blood clots will be absorbed by her body soon so that she can use this arm more as the right arm is still "dead" for any functional use right now.
The tendonitis is still there in the left foot/leg but is tolerable enough for her to move around short distances (bedroom to bathroom) multiple times daily. The short term memory is still pretty bad and she's starting to feel the burning sensation in her brain again so I'm hoping that the Radiation Necrosis isn't raring it's UGLY head again, one day at a time here and some days are one hour at a time.
Anyone who is local, please make time to come by and visit as you really lift her spirits each time you do. Also, if anyone would be willing to come visit soon and give me a break to get away and regain what small amount of sanity I'm clinging to I would be forever grateful...
PLEASE...if you are able to donate in any way, shape or form (cash, gas cards, groceries or gift cards for groceries) we could really use the help right now and no amount is too small.
If anyone has any good ideas for additional fundraising please let me know as, right now, I would love to get something more going so that we can survive until my paychecks get closer to normal...
Thank you for all the prayers, good thoughts, and positive energy you continue to send our way, we can't do this alone...
Remember, it costs NOTHING to share this on your FB page and YOU could possibly be the one that gets us in touch with someone who can assist during this difficult time.
BIG HUGS from me and Angel and lots of tails wagging, drooling, and slobbery kisses from Bernie, Bow Wow, and Brutus.
Warning in advance, this may be lengthy!
Angel spent Sunday through Saturday at the hospital due to complications with the blood clots in her left arm. So many tests, so many specialists, increase of blood thinners and addition of antibiotics (first by IV and now orally), the vascular surgeon was quite apologetic as he told us he could not do a clot buster or go in via catheter to resolve due to the AVM...
She's now hearing the "brut" again and I hope with all I am that it's due to the blood thinners...
She went back to the Nursing Home Saturday but I was compelled to sign her out "AMA" due to the attending physician at the hospital sending a new Rx to the nursing home for half the level of pain meds that her Pain Mgmt Specialist has her on and by Sunday her pain level was getting close to another hospital intervention...she had planned to come home this coming weekend as the tendonitis has calmed enough for her to walk short distances!!!
We already had her pain meds' Rxs from her specialist to be filled and with 24 hr pharmacies was able to get her comfortable at home before the night ended...imagine that!!!
I'm waiting on callback from her primary care Dr to get the blood thinner issue taken care of...
Always something to do but I'd gladly do much more to get her better :)
I'm hoping to get some time in at work this week but it's a day at a time right now...
Her Neuro appointment went well, he'll be following her closely and aims for July for the next full imaging.
The Neuro Opthomologist, after exam, scheduled her back to back appts with Optomotrist (sp?) and him for June 20th to see what they can do to help her sight issues.
Dearest friends and family, thank you for your patience, your undying love and support, and especially being there to give me strength when I feel I've hit my limit, I can't do this alone...
If you are in any position to donate (in any way), please do as we have quite a path ahead of us yet and could use any help that can be found.
Remember, it's FREE to hit share on your FB page and YOU could be the one who puts us in touch with the help she so desperately needs to get better.
Thank you for taking the time to read this, BIG hugs from me and Angel and slobbery kisses from Bernie, Bow Wow, and Brutus.
I will update again as things change.
Trying this again...Angel is still fighting the blood clot(s), you can see them under her skin and the swelling and bruising is heartbreaking to see :(
They're keeping a close eye on her at the Nursing home and checking her blood every other day or so to make sure the blood thinner level stays where they need it to help dissolve them. She can only use the left arm for short periods as it's quite painful and goes numb.
I'm hoping tomorrow's appointment with her Neurologist goes well and he has something more to offer to help regain some functional use of her right side. I'm also hoping the appointment on Friday with the Neuro Opthomologist goes well and he has more to offer as her eyesight has progressively gotten worse and the Nystagmis and wandering eye isn't helping at all :(
I'm to the point of having to weigh going in to work with going to the Nursing Home/hospital as I don't have the gas or money to replenish until I receive another (meager as it may be) paycheck next Friday.
I also need to make an appointment to visit the food bank prior to her release as the peanut butter and jelly won't be enough for both of us. I would never have thought things could get this bad but, this too shall pass they say and I'm doing my best to hang on by a mere thread of hope...
PLEASE, if you are able to donate in any way shape or form we really need you now...
It's really gotten to me the last few days and the tears just keep coming which is no help at all.
Prayers, good thought, and positive healing energy are desperately needed right now.
Hoping to post something good soon but, in the meantime, please share if you will as we need as much help as can be found right now.
Big hugs to all of you, we can't make it without your help...
Delores, Angel, Bernie, Bow Wow, and Brutus
Time for another update!
Angel's tendinitis is healing (slowly) and she's now able to put some weight on the left leg for short periods. The blood clot(s) are taking longer as the Doppler ultrasound done Friday showed. They've not gotten any bigger and there has been no separation which is good. Her blood levels reached the target goal so they've discontinued the shots and have her taking oral blood thinners. The arm is still quite painful and goes numb at times.
She sees her Neurologist (Dr Mutgi) this Thursday and her Neuro Opthomologist (Dr Katz) this Friday. Her eyesight is really bad right now and the "wobbly eyes" have increased (again) along with one eye straying. She is also suffering from hearing loss, at times which is rather scary...
I've not been able to put much time in at work with the appointments and numerous transports to the ER..she's long overdue for some good things to happen and we're hoping Dr Mutgi has something more to offer, medically, to help counter the deficiencies she's battling.
Thank you for keeping her in your thoughts and prayers, we can't do this without your help...
Please, if you are able to, donate in whatever form you can, It's all needed, cash to help pay bills, gas to get back and forth to work and the Nursing Home, and food to fill the cupboards and fridge prior to her return home. Again, whatever you can do to help will be greatly appreciated. If, however, you are unable to donate keeping her in your thoughts and prayers, stopping by for a visit, or just sharing this on your FB page would be greatly appreciated :) whatever you can do we appreciate more than words can express.
I'm hoping that my next update will have some good news to share for a change!
Hugs to all of you!!!
Delores and Angel
I'm overdue on an update so, here it is...
We had a scare last week, Angel's TB skin test read positive...they followed up with a chest X-Ray which didn't show infection and then did a blood test which took until this Monday to come back and it was negative (HOORAY!!!). She's been at the Nursing Home trying to recover from Achilles tendinitis in her left leg and it's a slow process :(
This morning she woke at 4 am with pain in her head in a different area and numbness in her left hand which progressively got worse as the morning progressed. The Dr at the Nursing Home sent her to Riverside ER and, after multiple tests, they found she has a blood clot in her upper left arm and "a couple" "superficial" blood clots in her lower left arm. The good news is that there was nothing in the lungs.
They are admitting her and conferring with Neuro to see if it's safe to start blood thinners to dissolve the clots.
They are actively working to get her pain level back under control and have been pretty thorough in checking her out (CTs w/contrast, X-Rays, ultrasound, and Neuro exams).
The Nursing Home will hold her room without charge, thankfully as I wasn't looking forward to packing up her stuff to take home only to have to bring it all back once she's discharged from the hospital.
It's starting to catch up to me, lack of sleep etc as I got sick over the weekend that turned to Bronchitis by Monday. I'm taking antibiotics, gargling, and taking cough medicine and am well on my way to a full recovery!!! Is it too much to hope that this "recovery" stuff could be contagious???
How much more must she endure???
I know, it takes time to heal ...
As you can imagine, it's been difficult to get much time in at work just yet but I'm hoping that things will settle down a bit very soon so that I can get more time in and see a decent paycheck for a change!
PLEASE, if you are able to donate in any way, shape, or form to help us through this setback we would be forever grateful.
We do understand if money is tight for you and appreciate your prayers, good thoughts, and healing energy. Keep in mind that sharing this on your FB page doesn't cost a dime and could possibly put us in touch with someone that can provide additional hope/help.
Thank you and big hugs to all of you
I've been meaning to post an update but have been so busy that once I get home all I want to do is take the dogs out and go to sleep for a few hours!
Angel was sent from St Ann's to Whetstone Gardens Care and Rehab Center where she spent one night and then was taken by ambulance to Riverside hospital (Friday afternoon) after having a seizure.
She has been running a fever on and off, has little to no appetite, and is now fighting to get the pain level back under control.
They finally got a bedside commode in her room so no more struggling with a bedpan!!!
Thank you Jordan for being there with her at the hospital until I could get there, you are so special and I am grateful for all you have done and continue to do. And, Rebecca, even with 3 jobs, your husband, and numerous animals, you still make time for Angel too! We are so blessed to have you in our lives :)
Big thanks to Stephanie and Brooke for coming to visit and also big thanks to Amanda, Erika, and Lisa for taking the time to stop by on your way up to Kent today, you raised my spirits by being here :)
Please, if you are able to donate to help us keep going, it would be very much appreciated. Any federal employees that are able to donate leave, I am on the leave donation list of approved recipients. Thank you to those who have donated in the past, this has helped tremendously.
If you would feel better sending gift cards, I shop at Giant Eagle, Meijer, or Kroger and get gas at Giant Eagle, Speedway, UDF, or BP. Gift cards for carry out meals would be awesome too but know that whatever you can donate in whatever form would be greatly appreciated.
Please keep Angel in your thoughts and prayers and know we appreciate that too and, if nothing else, please share this on your FB page if you can as we could use all the help that can be found.
Big hugs to all!
Delores and Angel
As you may know, Angel was transported to St. Ann's Hospital yesterday in excrutiating pain from her left (good side) heel up her leg :( they have been doing tests and have ruled out a blood clot (HOORAY :) but are thinking she may be suffering (quite painful) from "Achilles Tendinitis". I'm waiting to hear results from the MRI of her leg to, hopefully, show no tendon damage (which could require surgery).
She is unable to stand and has the left leg elevated and she may very likely be confined to bed and need someone with her constantly for a while :(
It's not that surprising as she's had to overuse (for lack of a better word) her left side to compensate for the lack of use of the right side since late June/early July...
Hoping St. Ann's has an inpatient PT/OT rehab program that they can put her in until she's mobile again...
PLEASE, if you can afford to donate (no amount is too small) or even donate a Meijer or Giant Eagle gift card as Angel has expensive ($80 copayment) prescriptions (1 at each) along with not so pricey refills from Meijer we would be forever grateful.
The food bank, family, and friends have made sure we have basics but Angel always needs fruit and dog food (kibbles and bits, any variety) and treats would be greatly appreciated by Bernie, BowWow, and Brutus :)
Any help (and hope) you can provide will never be forgotten.
Big Hugs to all of you and please share on your FB page as, that alone, is a donation you can definitely afford
Past due for an update...
The 5 day Ketamine infusion did help to bring Angel's tolerance down enough that the pain meds actually do help now!!!
She had an assessment done yesterday at Dodd Hall (OSU) for 2 different stroke rehab studies. Unfortunately, she's not yet at the level they need but since the studies will be ongoing they will check back and reassess at intervals. They will be passing her info to another Dr there doing a study she may be more at a level for...
Waiting on a cancellation to get her in to the Neurologist as she is still having seizures and the eyesight is pretty bad along with her short term memory.
This has been a long hard journey and all I can say is Thank You for all the support, we could not have made it this far without you :)
We still have quite a way to go yet and I'm unable to work more than part time yet with the appointments, Nurse visits, and not feeling comfortable leaving her for very long at a time alone...
If you are in a position to donate (in whatever form), please do, we still need you :)
If you feel compelled to share this on your FB page to help get the word out, please do as we would appreciate the additional exposure!
Thank you all
Delores and Angel Gang
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
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.
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
Update time again...sorry it has taken so long to get back with you, was hoping that I might have some good news to share.
Angel is still at home and that's definitely a good thing! We got word from Cleveland Clinic that the Tumor Board said "no" to additional Chemo treatments, they believe that there would be no additional benefit acheived through this and that the Chemo already received has put a stop to the continuing Radiation Necrosis. It was our hope that they would continue with the Chemo to see if it could reverse some of the damage caused by the Necrosis, as it's been shown to do in clinical research studies, but they don't seem to think the possible benefits outweigh the risks taken with the treatment. The only thing left now is continuing Physical and Occupational Therapy and hoping and praying that her brain will start to "rewire" and regain use of her right side.
She is still falling on an almost daily basis which makes me quite hesitant to leave her for any long stretch and this makes it hard for me to get much time in at work. I'm still hoping that I will get offered Voluntary Early Retirement Authorization with a Voluntary Seperation Incentive Payment as they try to shrink the rolls of us Federal employees but, no word (or even rumor) of that here yet...
The doctors want to leave the PICC line in for as long as it continues to be useful as she doesn't have very many veins left to draw blood from or even put an IV line in whenever necessary. This means I must continue to flush this each night and keep a close eye on the site to make sure it stays infection free as an infection there could get really "ugly" due to the fact that this line goes directly to her heart. A home Nurse comes in once a week to change the dressing and take her vitals and make sure that she's doing as well as can be, under the circumstances.
She is still dragging the right foot and leg, not much response (yet) to the physical therapy and (still) no functional use of the right arm. This is quite frustrating to her as she tries so hard in each of her therapy sessions and follow-on home exercises but no real gains to speak of yet.
I still continue to search to see if there is any additional research being done on treatment for this type of deficiency but have yet to find anything more. I will continue for as long as it takes to get her to a better place, I don't expect a 100% recovery but cannot accept that she will be at this level for the rest of her life and will do everything within my power to get her to a better functioning level.
PLEASE, if you are in a financial position that you can afford to donate to help keep us going, now is the time we need you most and any type of donation you can afford will be greatly appreciated whether it's cash, gas cards, grocery cards, pre-paid carry-out meal cards, groceries, or clothing donations (she really needs clothes, shoes, and a coat that fits), all are desperately needed right now. If you'd like to help pay for cable/internet, electric, or even our cell phones, don't hesitate to contact me and I will provide all the necessary information so that you can call the provider(s) directly for us.
If you are unable to help financially, we do understand this and ask that you continue to keep sending the positive, healing energy, good thoughts, and prayers her way.
If you'd like to donate your time, please don't hesitate to contact me and we can set up a good time for you to come and visit with her to give me a short break to help recharge (if you will) my caregiver batteries as they seem to be getting low at times but I will continue to push through as she's everything to me.
PLEASE, if nothing else, take a short moment to share this on your Facebook page as the wider this gets posted the more chances of help we get.
THANK YOU to all who have donated in whatever form, we can't get through this without you.
BIG HUGS and warm thoughts to all of you.
Delores, Angel, Brutus, Bow Wow, and Bernie
Wanted to post an update here...as some of you already know, Angel was sent to the ER directly from her Neurologist appointment last Thursday. Her Neurologist had a list of things he wanted to check for, including but not limited to a possible bleed and a possible blood clot in her arm. She was admitted and they did lots of tests and new imaging and the head Neurologist said that the imaging actually looked good this time and that he believes the Necrosis has been stopped. He was quite happy with this but is not ready to take the PICC line out due to her lack of usable veins. This is definitely GREAT news but does not address the damage that has already been done and, unfortunately, she seems to have lost some of the movement that was gained while in the Nursing Home :(
After thinking, re-researching, and much discussion between Angel and I we decided that we would go back up to Cleveland Clinic to see Dr. Tekautz (Neuro Oncologist) to see what additional options there may be to try to regain her right side, her memory, her eyesight, and the other deficiencies that she is experiencing.
I called Dr. Tekautz's office Monday morning and she said to come see her on Wednesday (today) and bring the latest imaging and reports from the Thursday thru Saturday admission at OSU.
We made the trip today and had an enlightening visit with the Dr. who believes that additional Chemo infusions will give her a better chance of regaining what was lost in the stroke and from the Necrosis. The next step is for Dr. Tekautz to take her case before the "Tumor Board" tomorrow and, if approved (which she fully expects) to move forward with 5 more treatments, higher dosage, and at 2 week intervals rather than 3. Once the medical treatment options have been done then she can restart the Physical Therapy sessions and, we hope, get the best benefit from these.
She is still in the middle of this fight and we are not giving up easily!!!
I must admit, I have truly enjoyed the additional time I have been able to spend with Angel through this but the cost is way too high and she needs her life back!!!
I still have not been able to put in the hours at work as I must be home to let the Nurse in once a week to change the dressing on the PICC line and also for the Physical and Occupational Therapy sessions. I am hesitant to leave her alone for long as she is falling on a daily basis, some days multiple times so it's been part time work, at best.
PLEASE, if you are able, donate in whatever form you can (gas cards, grocery cards, money to help pay bills, a home cooked or carry out meal) nothing will be turned away and everything will be greatly appreciated. If, however, you are not in a position to donate financially we do understand and appreciate the prayers, kind words, good thoughts, and healing energy you send her way.
One last request, if you'd be kind enough to share this on your FB page to help get the word out we will be forever grateful.
Thank you for being there for us, we can't get through this without you.
I wanted to take a few minutes to provide you one last update for 2013...
Angel is still in the middle of this fight and in it for the long haul.
She is having sight issues and her hearing is diminished which, I believe, are side effects from the Chemo. Unfortunately, with the sight issues and the exhaustion, she has fallen quie a number of times since she has been home. Thankfully, the only problem from falling so far has been a sprain to her left wrist which is healing nicely.
Her Neurologist (one of our heros, Dr. Mutgi) has moved her February scheduled appointment to January 9th. We are hoping that he will order, at least, another 3 Chemo treatments as, even though this exhausts her, this is the only known treatment for the Radiation Necrosis/swelling in her brain beside the Steroids which she's already gone through multiple rounds of and all they seem to do for her is make her gain weight (if you're a 20 something female, you know how devastating that can be)...
To her friends: PLEASE, if she doesn't answer your phone calls/texts right away, be understandidng as she doesn't have much energy and the eyesight issues make it so much harder for her to do the little things we all take for granted. Get with me by phone, text, or FB message and set up a time that fits both her/your schedules to come visit for a short time, this would definitely go a long way in cheering her up, she really needs to know you are there for her still.
Unfortunately, I've still not been able to put in the hours at work necessary to keep us going so I am asking once again, PLEASE, if you can afford to, donate in whatever form you can (cash, gift cards for groceries, gas, or even a carry-out meal). We would also LOVE it if you'd come by and bring dinner to share with us whether it be a home-cooked meal or carry out this would be so appreciated.
We are still waiting on the Dr. to sign off on the paperwork necessary to get her power chair ordered through the Insurance company. My hope is that this will get her out of the house more and provide her with a little more independence which is so desperately needed.
She is still on schedule with Dr. Cheng at the Cleveland Clinic for the 5 day Ketamine drip in March which we hope will bring her tolerance to the pain meds down to a more normal level.
One last request...PLEASE take a quick minute and share this on your FB page for wider coverage, your support, in whatever form, is desperately needed right now.
Let me also take this opportunity to wish you all the very best in 2014, hoping to say this is the year that all this fighting and hard work in her therapy sessions will pay off and she will regain memory, normal eyesight, and the full use of her right side.
BIG HUGS to all of you, we couldn't have made it this far without you :)
Angel has been home from the Nursing Home for 9 days now and we're still trying to get used to the new "normal" here!
A wonderful Nurse comes in weekly to change the dressing on her PICC line, I have learned how to flush the lines daily (usually at bedtime), and she will be getting occupational and Physical Therapy both twice a week (at home!).
I won't lie and say it's been easy but we are adapting and will get this down to a science before long!
Still waiting on the NeuroOncologist to decide whether he wants to do more chemo (Avastin) or whether we need to follow up with Cleveland Clinic to continue the chemo there, it would certainly be easier to have this done here in Columbus but if we have to travel to Cleveland again, so be it!
We are so grateful for all of you, those who have donated monetarily, those who have given of their time, and those who have sent good thoughts, healing energy, and prayers.
a big THANK YOU to the wonderful cleaners who helped to get the house ready for her return, you ladies are AWESOME and we appreciate all your hard work. What a way to show how much you care!!!
Another big THANK YOU(and WOOF times 3:) to our wonderful friend who is keeping the dogs stocked on food and treats, you are an Angel straight from heaven.
It's been hard to juggle being home to let in the Nurse, Therapists, going to appointments, and trying to put in hours at work but, again, it will get easier as time goes by and schedules get more permanently set.
That holiday spirit has been elusive this year but I'm determined to find it and fill my home with it before Christmas gets here!
As for my dear Sisters and Brother, without your support I would have been committed before now, they're keeping the straightjacket warm and the padded walls still whisper my name at times :)
The Chemo is helping but it's a slow process and that's hard at times but Angel is such a fighter and is doing her best, I'm so proud of her every day.
Please, if you can afford, donate in whatever form you can. Money, gift cards, your time, kind words, positive thoughts, healing energy, prayers...these are all priceless and we thank you all for being there for us.
If you are so inclined, please post this on your FB page for the widest coverage. If you don't, nothing bad will happen and we'll still love and care about you but, if you do, know that (maybe) you may have the power to put us in touch with someone else who may be facing something similar that could offer additional resources we haven't found yet.
Wishing everyone a wonderful holiday season, health, and happiness.
We love you all
Just wanted to post a quick update...Angel is still fighting the exhaustion the Chemo gives her. She's still at the Nursing Home but wants to come home before Christmas. The next MRI/MRA is scheduled for December 4th, the results will drive any further treatment. It's been rough but she's quite a fighter and will overcome this! Angel's birthday is next Friday, the 29th, hoping to be able to at least take her out to dinner to celebrate.
PLEASE, if you can afford to donate, we could sure use it now. Continue the prayers, healing energy, and good thoughts coming her way, there's no way we could have made it this far without you.
Please re-post on your page for maximum distribution. We love you all!!!
Just wanted to post a reminder, Friday is Chemo day (number4) and they've set the next imaging for the beginning of December rather than January. They are keeping a close eye on her as things are starting to shrink slowly.
PLEASE keep my Angel in your prayers.
If you or anyone you know can afford to donate in any way, please do.
Thank you and big hugs to all!
Update time!!! I know, long overdue...Angel had her Imaging done last week and the Neurologist said that it appears that the "bad" areas are starting to shrink!!! Unfortunately, this is a slow process and she hasn't regained much, if any, of the use of her right side but she is still at Villa Angela doing Physical Therapy up to 6 days a week and they will be continuing the Chemo treatments every 3 weeks with the next imaging scheduled for the beginning of December. Her next Chemo is on November 8th and this stuff really zaps her energy and makes her nauseous with a chemical taste and smell (although I don't notice it) that she just can't seem to break :(
She's been so strong through all this and I couldn't be prouder of how well she handles all the ups and downs. I wish I could be as strong as she is.
The stress finally got me after the last Chemo treatment and I ended up passing out in her room at the Nursing Home and she had to call the Nurses in as I didn't want to come to right away. They checked me out and so did the guys from the squad they called and all my levels were good so I decline the ride to the hospital as I was feeling fine.
I followed up with my Dr and he said, since it was a one time thing and there were no complications that he was not concerned. I guess that was my wake up call to take better care of myself (like eating more than once a day etc). I'm doing my best to not let this happen again as it really scared Angel (and the Nurses).
She's not out of the woods yet but is headed in the right direction.
PLEASE, if you can afford to donate in whatever form you feel good about (gas cards, grocery cards, clothing cards for her to get another pair or two of sweat pants to get her by until she gets her "old" body back...damn steroids..., even cards for a meal out would be a nice gesture that she would really appreciate). If you have nothing to donate but your time, PLEASE go visit her she'd really enjoy your company for a little while.
Most important, PLEASE share this on your FB page so that it can get to others who may be able to help in some way.
Thank you to all who keep checking on her and me, we feel the love and appreciate you being there for us.
A special THANK YOU to the "Angel" that has been providing dog food and treats for "the boys", you are such a blessing and to do this for a friend of a friend, virtually a complete stranger to you, speaks volumes about the wonderful person you are and we are truly blessed to have you in our lives.
PLEASE keep the good thoughts, positive healing energy, and prayers coming our way.
Thank you and big hugs to all...
Hello again! I'm at home getting ready to go in to work for a few hours this afternoon and wanted to post an update for you, Angel saw the Nurse Practitioner (Judith Lima) at the Neuro Oncologist's office yesterday and, despite the side effects/new problems/symptoms she's experiencing, the second infusion of chemo is set for Friday (tomorrow) at 11 and will have the 3rd dose 3 weeks and imaging set for October 24th. She told us that their goal with the chemo is to arrest the spread of necrosis and kill the astrocytoma that may be there near her thalamus. She also said that there was no promise of regaining what she has lost and their goal is to stop progression right now. Part of me is thankful for her realistic view, as Angel would put it (and mainly for this reason as she thinks more like Angel which is comforting to her), but most of me still clings tightly to the hope that reversal and regaining functions can and will happen. Her eyesight has gotten progressively worse, her balance is shaky, short term memory loss, searching for words and, sometimes getting the right word in her head but saying a different word instead but aware of this enough to call herself out on it and say the word she meant to say. Her energy level is zapped still from the last dose but she still has the determination to push herself continually during therapy and on her own. She will still call me out and tell me not to do things when I see her struggling as she wants to do them herself, she's never been one to take the easy way out and it's so hard to hold back from helping.
PLEASE, if you can, donate through the website or send gift cards directly (gas, groceries, restaurants with take-out to bring her a good meal there at the Nursing Home). If you are local please take the time o go by and visit her, take her lunch if you want to bring something, the two of you (you know who you are:) that brought her the outfit during one of her hospital stays, please know that's her go-to outfit when we leave the Nursing Home for medical appointments etc a part of you is there with her, thank you and know how much she appreciated this wonderful gesture.
Also, and most importantly here, PLEASE take a moment to share this on your facebook page so that others that can help in any way shape or form will see it, let's get this going "viral" :)
Thank you and know we LOVE you all
Today will be a week that my dear Angel has been back at the Nursing Home (Villa Angela, please visit if you are local). Tomorrow will be 2 weeks since the first chemo (Avastin) treatment. She is showing side effects, little to no appetite, severe vision problems, nosebleeds, and very little energy. She is trying to do Physical/Occupational therapy but can only do a little each day. I continue to visit her daily and will take Bernie (her St. Bernard) in on the weekend (both Saturday and Sunday and, if she requests, Friday afternoon) this cheers her up and it brings me joy to see her smile. She hasn't regained use of the right side yet but she's only had 1 infusion so far.
She has an appointment tomorrow with Dr. Pease (Physical medicine and Rehab) at OSU, not quite sure why as she's receiving therapy at Villa Angela but I will take her and see what more he can offer, he may just want to follow her case as I've been told she's an "enigma". She's scheduled to see Dr. Cavalierie's (sp?) Nurse Practitioner (Neuro Oncologist) on the 25th and the next Avastin infusion is scheduled for the 27th as outpatient at the James (OSU). The next imaging (MRI/MRA extensive of the brain and brain stem so, head and neck) will be on October 24th at OSU main as she will need to be sedated. The next Neurologist appointment is scheduled for February 6th although she is on Dr. Mutgi's cancellation list and, as closely as he's been following her, I expect she'll see him before the end of October or, at the very least, he will call me and let me know what the imaging shows, he's very caring in that way and calls direct rather than having a nurse or assistant call. We are so thankful to have found him
Such a rollercoaster ride since my last update...last Thursday, late afternoon, Dr. Mutgi came into Angel's room at OSU and said he ha gone to the top with the insurance company and they had approved the Avastin (chemo). He said that, if this is the "rare" form of Cancer he suspected then the Avastin will treat that and if it's just massive spreading of Radiation Necrosis then the Avastin is the only hope to arrest and possibly reverse this. He went on to say that if they did the biopsy, as scheduled, on Friday they would have to wait an additional 5 days to start treatment and his take was that since it had been approved they should skip the biopsy (for now at least) and put a PIC line in and get her first Avastin infusion done Friday (last) with the next scheduled in 3 weeks and more imaging in 3 to 6 weeks. He had expected that she would be released on Monday but they had a hard time getting the pain back under control and she had no appetite whatsoever (still working on that). She was released from the hospital yesterday afternoon and transported to the Nursing Home (Villa Angela, please visit if you're local). I stayed behind, packing up her stuff and then stopped home on the way to pick up both fans. After unloading at the Nursing Home, I went back home for the next load, including the fridge dear Lila is letting her borrow and fruit, drinks, and cereal. Let's not forget Bernie, yes he hopped into the car and was so happy to go see Mama again as he couldn't visit while she was in the hospital. They're still trying to keep up with the pain and get her to where she's able to do more physical/occupational therapy.
I must say a HUGE THANK YOU to dear Donna and her amazing friend Ree (not sure on the spelling here) for driving up from Dayton, taking me to lunch and bringing 3 huge bags of dog food, flea treatment, and even cigarettes (yes, I need to quit but even my Dr. says right now would probably not be successful)! What awesome ladies, hadn't seen Donna in over 30 years but she still looked the same to me and it was wonderful to spend the time with these awesome ladies, didn't realize how much I needed that break from the usual routine.
I need to also say a big THANK YOU to Rebecca for taking on the role of fundraising coordinator, hope to see many friends at Starbucks tomorrow to share ideas and make plans!!!
Just as important, THANK YOU to all of you who have donated either through this site or in person, gas cards, dog food, taking Angel to lunch/dinner, donating leave to me so that I still get a partial paycheck and can do my best to keep thing going at home, and many other ways to keep us going.
We LOVE and appreciate everything you do to help us. Thank you for the many phone calls, e-mails, and visits to both Angel and I, we couldn't get through this without all of you and, no matter what way you have "donated whether monetary or giving of your time for emotional support, this truly is amazing feeling the outpouring of love you all continue to show us both.
PLEASE, if you are able to donate, in whatever form, do so as this fight is ongoing and we do need your help.
Keep those good thoughts, positive healing energy, and prayers coming our way.
Last, PLEASE take a quick minute to share this on your Facebook page, we still have hope that someone else out there (a friend of a friend of a friend) may be able to offer additional help/hope or ongoing studies and new treatments for us to research and bring up to the wonderful specialists on her team.
Again, THANK YOU all, we truly appreciate everything you do for us and send much LOVE to all of you.
So much has happened in the last few days that I feel it would be unfair of me to not keep you updated...Angel's Neurologist (Dr Mutgi) called Tuesday and said the imaging was very concerning. He wanted her transported, by ambulance and not my car, to OSU immediately. He feels it's imperative she have a biopsy of the affected brain tissue to rule out a rare form of cancer. He has coordinated with her Neurosurgeon (Dr Powers) to have the biopsy performed on Friday. It will take up to 5 days to get the results which will drive the treatment plan. He told me that without immediate intervention this would be fatal. Her symptoms have progressed so quickly, she is now losing sensation on her left side multiple times daily and the headache has been hard to get under control with her pain med regimen, she was seen by more specialists today than I could count! Dr Mutgi has spoken with the insurance case manager to get approval of the Avastin on the fast track but if the biopsy shows cancer they will move her to the James Cancer Center there at OSU where their top Oncologists will formulate an immediate plan of action. She was seen by so many specialists today I lost count by noon. Dr Powers showed her the latest imaging and it's really scary how quickly this is progressing. PLEASE, if you are able to donate financially or send gas/grocery/pet food cards, any of these would be greatly appreciated. If, however, you are not able to donate financially we understand and ask that you keep sending positive thoughts, healing energy, and prayers. After the biopsy is done she will be in the ICU until stable and then will either be admitted inpatient to Dodd Hall (again) at OSU for intensive inpatient physical and occupational therapy or, if no bed available at Dodd then back to the Nursing home for 5 to 6 days of therapy a week. This will be in addition to whatever chemotherapy is needed whether that's the Avastin for the swelling and radiation necrosis or whatever plan the Oncologists feel is best to treat the cancer if that is found on the biopsy. Right now they are trying to get the pain under control and she is in an area just a step down from the ICU. PLEASE if you are able to donate financially or send gas/grocery/pet store cards to help feed the dogs anything would be greatly appreciated. If, however, you are unable to donate financially please keep sending positive thoughts, healing energy and prayers. Also, please take a moment to share this on your Facebook page, we need all the support (in whatever form) we can get. Thank you and know that we love you all and appreciate everything you have done from donating to visiting to providing moral support. More to come soon,
Seems I'm overdue for an update here, so sorry to keep you all waiting. Angel is still in the Nursing Home (Villa Angela for those who are local and come visit). Progress is very slow even though she's giving all she has and then some. She had her imaging done on Friday and the disc is on it's way to the NeuroOncologist at Cleveland Clinic, things can't move quick enough...I feel as if my full time job has turned into a part time job some weeks with the appointments and trying to spend as much time with her as I can. This has been the roughest 2 years we've ever had but, thanks to people like you we are (barely) getting by. Thank you for those who have taken the time to check in on us, we feel the love and it helps to keep us going!
Please, if you are able to, donate. If it's not financially feasible, I understand completely and your good thoughts and prayers are all worth their weight in gold! Most importantly, please share this on your Facebook page as we still hold hope that someone out there has a similar story that we might be able to learn from. In talking with her Neurosurgeon's assistant, I was told Angel is an enigma, things they expect to help don't and her symptoms are quite different than any they have seen so far. We are still fighting with all we've got, me coordinating with the specialists and searching for anything more that's out there and her with the physical and occupational therapy.
Thank you again for all your support in whatever form you've been able to give. We love you all
Hello again! Angel is still in the Nursing Home, thank you for those who have taken the time out of their busy schedules to stop by and spend time with her, it is so thoughtful of you to do this. I know a Nursing Home can be a sad place to visit but if you turn it around and realize that you're bringing hope and good company to someone who has to be there day in and day out alone, except for when I'm there, it's really not so bad. Be sure to say hello to all the other residents you may pass in the halls on the way to her room, they appreciate being noticed and deserve at least that out of respect. I will be bringing Bernie in Saturday and Sunday so if anyone wants to play with the "saintliest of all Bernards" come on by!
Angel's MRI/MRA is scheduled for August 30th and we'll be next day airing the disc(s) to Cleveland Clinic for them to petition the insurance company with clinical proof that (even though it's not FDA approved for this purpose) Avastin has been shown to reverse Radiation Necrosis...this has been a long bumpy road and we're not even halfway there yet :(. PLEASE, if you can, donate, send good thoughts, healing energy, and prayers her way. Even more important, PLEASE take a brief moment to share this on your FB page, we haven't heard from anyone else out there who may be in a similar situation and I find it hard to believe that there's no one that we could compare notes with etc. Thank you so much for being there for us in whatever capacity you are able. We love you all so much!
Another week gone by...
Angel is still at Villa Angela (go visit if you can!) getting intense therapy 6 days a week. I shadowed her in therapy on Friday and gained a new level of respect for her (just when I thought there was no way she could impress me more than she has already). She pushes herself way beyond what I've ever seen anyone do, she works until she breaks a sweat and then just keeps going and going! Even though regaining her right side is progressing much slower then she expected she is fighting with all that she has and then some! Go Angel!!! Waiting on the Neurologist at OSU, Dr. Mutgi, to order the next set of images to be shared with her Cleveland Clinic Neuro Oncologist, Dr. Tekautz, who will take these to their board and see if they are willing to petition the Insurance Company to rethink their denial of coverage for the Avastin. I hate the waiting part and seeing her struggling but pushing through is so hard. I want the cause of this being treated in conjunction with the results, is that so much to ask???! On the 12th it will be 30 days she's been at Villa Angela so you can understand my frustration with the waiting on Drs part...
Angel has been forced to learn patience through all of this and I'm so very proud of how she is able to stay positive and even call me out when I get too "boo-hoo-y" on her.
Please keep sending the healing energy, positive thoughts, and prayers, donate if you can, and even more important PLEASE hit share...we've only run across one other person with a similar medical issue and there truly has to be more on all of Facebook...
Thanks and know that we are truly grateful for all the support you provide in whatever fashion :)
Good Morning! Such a beautiful day outside yet I sit here with tears rolling down my face...sometimes it just comes out and there's nothing I can do to stop it...Angel had her second appointment at Cleveland Clinic yesterday and the Dr. believes the Avastin is the most promising next step...she gave us 2 printouts of the drug details, so many possible negative side effects. How much suffering can a parent watch their child endure without hitting the breaking point? I'm trying so hard to keep it together but every night I leave her and come home to the dogs alone, we all take a peek in her room and I sit with them and give them extra love telling them it's from their Angel or, in Bernie's case, Mom and that the Drs are doing their best to make her well so she can come home soon...am I reassuring them or me at this point?
The Cleveland Dr wants Angel to obtain more records and finish the steroid taper (the 26th will be the last day) and then have the follow-up MRI/MRA done and have a copy of that disc sent to her so she can take all the info in front of their board and they can formulate a plan to either petition the insurance company to reverse the denial of coverage for the Avastin or formulate another treatment plan for her....nothing will happen fast enough....in the meantime the bills keep piling up, today I was successfully able to extend my phone bill for 1 week in hopes the leave donation from my dear cousin Chris comes through and I get a decent paycheck next week. The cable may be shut off before then but, that's just a luxury anyway and I'm not here that often anymore to spend any time in front of the TV although it does sometimes take my mind off things for a short while....Times like this I feel like I'm letting her down, she's so strong and handles it all so well and here I sit crying...Those of you with children, can you imagine what it feels like to have to visit your child in a Nursing Home? It seems so unfair and she's their youngest patient. I put on that fake happy face and say hello to all the other patients I pass on the way to her room while my heart is breaking on the inside. Thank you to al of you who give me a genuine smile in return and try to offer a few word of encouragement, you do help keep me going. PLEASE donate if you can in any way (cash, gas cards, grocery cards, everything helps). Good wishes, prayers, positive healing energy, these are all needed. Also, PLEASE, take a quick moment to share this on your page, I haven't given up hope that a friend of a friend may have some help/hope to share on this rare condition.
Thank you and know we love and appreciate all of you more than words can express...
Angel is now at Villa Angela Nursing Facility; more inpatient therapy...I took her to Cleveland Clinic's Radiation Necrosis Clinic yesterday (thank you again Michelle for helping fund this trip :) and they did a thorough assessment, took the imaging discs, have received some, but not all, records from the hospitals so they had her fill out another release form to be faxed. Their first thought, since she's already taken more than enough steroids to show they're not working for this, is the Avastin (Chemo drug) but insurance has already denied the request submitted for this from OSU...they'll be discussing her case at tomorrow's board meeting so I hope to hear from them by mid next week although I will call Monday afternoon and hope for the best. I have had to take off so much work unpaid and it's starting to really catch up so, PLEASE, if you can afford to donate anything right now it would definitely be appreciated, every little bit helps...Thank You and please take a minute to share this on your page, maybe a friend of a friend can offer some help or hope, either right now is priceless...
Angel met the "criteria" for outpatient PT according to the folks at Dodd on Monday although my insurance company told me that if they had submitted the paperwork and coded things correctly, taking into consideration her Neurological issues she could have been approved for up to 6 weeks...We made sure the releasing Dr put in her notes that we both felt her release was premature and she was not safe to come home yet. We went straight from Dodd to Target close by to get her 2 Rxs filled and I noticed while we were walking through the store she was dragging her leg again. It got worse from there, she lost all that she had gained and I took her to the ER at Riverside since OSU was on "surge" and I knew it would be hours waiting and not knowing if they would take her seriously after how we left things at Dodd. Riverside took her back immediately, did imaging, and the Dr told us he saw what looked like she had had a stroke. He admitted her and they've done numerous tests etc and are now working with insurance to get her transferred to a Nursing/Rehab (more PT) facility, probably tomorrow. She doesn't remember much after being at Target so the memory is definitely being affected. I have worked less than a full day this pay period, the folks at Dodd expected me there for quite a bit of the time, but hope to get some hours in tomorrow which will be the last day of the pay period since my furlough day is Friday...needless to say, the paycheck will not be enough to cover rent, electric, etc...PLEASE, if you are in a position to afford to donate, even a little, it would really help us in this time of need. I know $ is tight on everyone right now and understand if you don't have enough to cover your own bills. If that's the case please still keep her in your thoughts and prayers, that's priceless and has to start working soon...If nothing more, please take a quick minute to share this on your page, sometimes a friend of a friend ends up being a lifesaver...much love to all.
Another update...Angel has been in the hospital since last Thursday. Yesterday they transferred her to Dodd Hall for intensive inpatient physical and occupational therapy. She has no use of her right side....unfortunately, she is right-handed which makes things all the more difficult for her.
The Neuro Oncologist has sent the paperwork off to the insurance company for approval of the chemo drug Avastin which has shown, in studies, to help and, in some cases, reverse radiation necrosis. They have been giving her steroids to help with the swelling in the brain but they don't seem to be doing her much good. Those of you that are local, please come visit her if you can and if you're willing to assist me in getting Bernie to her for a few hours for some pet therapy let me know and I will gladly work around your schedule.
Those of you reading who are in a position to be able to donate, please do. Those of you who can't donate $, please keep sending good thoughts, positive healing energy, and prayers her way.
Please hit "share" if you're willing to post this on your FB page as if it inadvertently gets to someone who has experienced any of this first-hand and can offer any additional insight that would be a miracle to us due to the rarity of this condition. Every time a highly respected Dr. looks at her and says "we're learning so much from you" I just smile politely while I'm screaming inside...enough already, make my baby well again.
Thank you for all your support in whatever form you have provided. Even a smile during an extremely rough day can give us the strength we need to continue this fight.
We love you all....
Haven't given an update in quite awhile now and I owe you all...good news first, the 1 year out MRI/MRA showed the AVM is almost gone!!!! Bad news is now she is dealing with swelling in the brain and "significant" radiation necrosis. This is causing her whole right side to be numb and the Neurologist said, 0n the 16th of May that he wanted her admitted immediately that, without intervention, she would end up paralyzed on that side and it wouold be "irreversable". She went into OSU hospital that night and was there until the following Sunday (10 days). While there they put in a PIC line and gave her 5 Plasmapheresis treatments. This seemed to be helping some as she started to get the pins and needles sensation in her right hand but has now regressed back to the numbness which causes her to sometimes drag her right leg when walking. She's in great spirits most of the time and I only wish I could be as upbeat as she is every day. Angel is scheduled to go back to the Neurologist on the 17th of June and we both hope that they will have another plan ready at that time. She has already been approved for another 20 Hyperbaric sessions but they are putting that on hold as they want to make sure that the blood oxygen barrier in the brain hasn't been compromised before proceeding with any more sessions. They have mentioned another round of steroids but she's already been through 2 rounds and they didn't help, only caused her to gain weight which she's still desperately trying to lose and get back to her "skinny me". They have also mentioned the drug Avastin, which is only FDA approved for 4 different types of cancer but, in research, has shown to help with necrosis to the point of bringing back some dead areas but this drug is extremely expensive and comes with quite a long list of bad side effects that she's not willing to gamble on just yet although the Neuro Oncologist did forward to Insurance to see if they would approve it for her.
This has been quite an experience so far for both her and I and neither of us would have been able to make it this far without your unending love and unwavering support. Please donate, if you are able to, and keep the positive energy, moral support, and prayers coming as the radiation can still keep working for another 4 years yet and continue to cause damage. Also, if anyone out there knows of any additional help for radiation necrosis, please share this as even the doctors are in new territory with her case and I'm researching and reaching out for anything that might help her and have not been able to find much out there. We send our love and thank you all for being there for us.
Doing laundry, packing, watching Angel sleep peacefully, starting to clean the room, goodbye Ronald McDonald House, we're going home today!!!! Angel had another nerve block yesterday (Stellate Ganglion), large needle in her neck, not a fun procedure but it was over quickly. Unfortunately no relief so the Dr put her on Methadone to give her body a break from the dilaidid and, hopefully, bring the tolerance down that way rather than the 5 day ketamine infusion. Hoping this works as we need to get home to our own beds, our dogs, our support network, my job, her friends...you get the picture...bills don't stop coming in but the paycheck is smaller when I only get half the time put in, thankful I was able to do that and looking forward to putting the hours in this coming week. Need to call the neuroopthamologist next week, the wobbly eyes are returning so, possibly, another round of hyperbarics? We'll see what the future holds, thinking positively and hoping (praying) we'll see things start looking up from here. Thank you all so very much, you may not feel like you've done much but we feel the love and that's what keeps us going when things look hopeless. Thank you for the long talks, sharing your problems too and maing me feel "normal" even if it's just for a little while, that helps more than words can express. Don't think I could have made it these last 2 years without all the love and support you have given. Thank You, 2 words that seem inadequate to cover all that you have done and the love you have shown without fail..I don't think it's possible to really let you know how much this means to me, to Angel, it's overwhelming when I sit and think about it. Cyber hugs to all! I will post another update sometime next week, please hit "share", let everyone know how much you've helped us, and maybe we can help someone else by showing how much love is really out there!!! Be healthy, be safe, and know the love is coming right back at you all!
We were at the ER last night until 5:30 this morning. Pain level was off the charts and they had to give her fluids and IV meds to bring it down to a tolerable 7 (out of 10). Can you imagine having a headache for over 2 years now? Found out today that the Dr has been out of the office the last 3 days, that explains no return call...she has an appointment at 9 tomorrow morning to see what the next step will be..she's developed a strange rash, red and radiating heat that moves frome one area to another. Stumped the Drs at the ER, possibly a side effect from the nerve block...hope to get answers/direction tomorrow. Will post another update after we learn more tomorrow. Please keep sending good thoughts, positive energy, and prayers. Your encouragement helps more than words can express. If you have time, hit "share" we haven't made it around the world yet! Sending the love back to you, cyber hugs for all!!!
Back at the Ronald McDonald House in Cleveland...We checked in Saturday ("easier to get a room on Saturday than on Sunday") and enjoyed the Superbowl with the other families watching the tv off the kitchen, good food good company but NO alcohol, Angel commented how strange that was, a Superbowl with no beer, wine, or mixed drinks!!! Gotta love a 22 year old perspective! She had a Tri-Geminal Nerve Block Monday and, by Tuesday late afternoon, returned to the same pain level as before the procedure. I called her Dr and they didn't get back to me until this morning and that was just his nurse checking on Angel's status to pass on to the Dr and saying she'd call me back as soon as he went over her info...still waiting. His original plan was to try a Stellate Ganglion Nerve Block next and, if no relief, go to the 3 to 5 day Ketamine infusion. I'm wondering if it might be best to just go to the Ketamine as that's what is supposed to "reset " her tolerance level for the pain medication. I'll definitely bring that up if he doesn't come to this logical conclusion himself. She stayed in bed all day yesterday and is still in bed now waiting, resting (thankfully), and building up her energy for the next step. When the pain gets really bad, you can gauge the intensity by the redness in her cheeks and ears which will also spread to her neck and chest. She was rosy last night and it really tears me up having to see her in that much pain and not be able to do anything to help. It makes me want to stomp across the street, make my way to the Dr on the second floor, grab him by the arm and drag him over here to see first-hand what she's going through. I'm sure Security would grab me before I could get him out the door but, what a thought...in a perfect world!
I will post another update after I hear from the Dr to let you all know what the next step will be. PLEASE hit "share" so that this can get to everyone who may be following and maybe her experiences can help someone else who may be suffering. Keep sending good thoughts, positive energy, and prayers...we LOVE you all!!!
And now, the very latest...We'll be headed back up to Cleveland Clinic this weekend, Angel has the first Nerve Block (TriGeminal) scheduled for Monday at 1:00, they'll be sedating her for this and, if you do any research on this procedure, you'll understand why. Angel is nervous but has been in so much pain that she says Monday can't come soon enough.
It's been really nice to be able to go to work this week, so much love from my co-workers I feel truly blessed. Please keep Angel in your thoughts and prayers, she really needs this procedure to work and provide her some long overdue and much needed relief from the pain she suffers on a daily basis. We'll be staying overnight after the procedure to make sure there are no complications and to be there in case it doesn't work so we can schedule the next procedure (Stellate Ganglion Nerve Block) ASAP.
PLEASE hit the share button on this one, we need as much circulation as possible so that if there's anyone else out there that has been through this or is going through this now can share their experiences/benefit from any of hers...this is rare but the world truly isn't that big.
Thank you all and know that I will provide another update by mid next week :)
Update time! Angel had her appointment with Dr. Cheng today and he will be trying a nerve block injection (under light sedation/pain medication) possibly in 2 places if the first doesn't work and if neither work then he may be willing to do the 3 to 5 day Ketamine infusion...she's been to the ER twice in the last 3 weeks that we've been here in Cleveland and each time just another band-aid and out the door hours later (IV fluids, zofran, pain medicine) with the pain level never going below a 7 but a 7 is so much better than a 10 plus and I've seen that too many times lately...when the pain spikes her ears, cheeks, and neck all get bright red and she just seems to radiate heat from these areas, this must be due to the AVM being on the thalmus area of the brain. Dr. Cheng wants to get the nerve block(s) done as soon as they can be scheduled after insurance approves so I thought it best we stay here another day or two so she'll be able to sleep after the procedures and we can leave Ronald's Hotel the next day. Thankful I have such a wonderful brother, he'll be driving up to Columbus tomorrow from Dayton to see if our beloved Brutus has been picked up and is at the animal shelter, he's been gone almost 2 days now and we're both worried sick about him out there, didn't need this on top of our other worries but sometimes that's how life goes and we have to do our best to roll with the punches. Have met some really wonderful and courageous people here at "Ronald's Hotel", the family across the hall is dealing with similar issues with their teenage daughter but her's is a mass in another area of the brain and it was comforting for all of us to share experiences, frustrations, and things we've learned along the way. People have to realize there's a difference between tolerance and addiction and that you can't always tell someone is ill by the way they appear on the outside. I'm thankful we found Dr. Cheng and that he's not giving up on Angel even though she's a "difficult case" to treat. PLEASE, if you can help in any way, donate send good thoughts and positive energy or pray but also take a brief moment to hit SHARE and get this out to someone who may not have seen it yet. I will not give up until my sweet Angel can lead a normal life again. Thank you all for the love you have shown, we do feel it and it helps us get through each day.
Another ER visit last night but still no relief from the pain for Angel and the vision disturbances are flaring up again, Monday's appointment can't come soon enough. She found a Doctor's post on the Mayfield Clinic website that talks about the severity of the headaches caused by AVMs and I told her we need to print that out and take it with us to any future appointments. Yes, we conferred with Mayfield and it was a heartbreaking day for me as I had so much hope driving down there and we had sent imaging and their 2nd highest said he would like to see us after looking over the imaging sent etc but when we got down there he had nothing more to offer and said he would have gone the same route with the radiation and if things didn't get better in 3 years to come back and see him again....3 years???!!! Really? Angel has mentioned that she'd be willing to go to a different country if she could find someone willing to do the surgery to take the AVM out....the pain she goes through daily is so hard to bear at times and it just breaks my heart that all I can do is keep pushing the Drs and keep searching for adfditional info to provide them. The Neuro folks that seem to undrstand don't know what else to do and those who don't understand want to try to treat her for migraines which she let them do in Columbus and had very bad reactions to more than 3 of the "cocktails" they use for migraines....so frustrating for her and also for me to see her put into more pain by agreeing to be their "guinea pig". PLEASE continue sending good thoughts positive energy and prayers and also PLEASE take a brief moment out of your day to share this on your FB page maybe a friend of a friend of a friend has had experience with this and can offer some hope/direction to help alleviate her suffering.
Well, I wish I had good news right now but, unfortunately, the Lidicaine drip (which they gave her 500 instead of the normal 200to 300 ml? dosage) didn't work...she was in there over 5 hours yesterday, I saw others come and go but kept waiting on pins and needles hoping, praying and no relief. It actually escalated her normal headache and the wobbly eyes are now coming through again. Thankfully they're not constant but the Lidocaine or being out of hyperbarics for a while now it's starting to escalate again. We came back to Ronald's hotel after the procedure, she took 1 pain pill and we both took a long overdue nap. By 9 last night her headache was out of control, she almost blacked out when she stood up to go into the bathroom, vomited twice, and had weakness/tingling/numbness in her right hand so over to the ER we went. She was seen by residents, nurses, Neuro folks and the Supervising ER Dr. they all put their heads together to try to help and ran 2 bags of fluids, magnesium, benadryl, and a dose of dilaudid through the IV. Then they did a Depakote infusion through the IV and anoyher dose of dilaudid and sent us back to Ronald's this morning around 4:30 with instructions to get back with Dr. Cheng (the pain mgmt specialist who did the procedure yesterday) and possibly see if the Headache Center might be able to offer assistance. She has an appointment with Dr. Cheng Monday at 1:45 (the soonest he has open) but I asked she also be put on the list if he gets a cancellation before then. They told her yesterday that, after some research, Dr. Cheng doesn't think the Ketamine infusions would ba a good option as they're concerned how the AVM would react and don't want to cause a bleed. Back to square one. I have spent the last 2 weeks up here with her as their policy is she must have a caregiver here so now my paycheck will be way short as well as the next one which is based on this week and next...Please, if you can, donate. If you can't help financially, I understand completely and ask that you send good thoughts, positive energy, and prayers as those are needed just as much. I'm requesting that you share this on your facebook pages (again, even if you have already) as that's the quickest way to get this around the world to see if there is anyone else out there that has gone or is going through this that can share advice and offer hope. Thank you for caring, sharing, and helping in any way you can...
Update time! Finally some GOOD news to post! We're still at the Ronald McDonald House in Cleveland awaiting scheduling and, after a few worthless phone calls, I went over to the Pain Mgmt office in person to see what I could do to speed up the process. Long story short, Angel is scheduled for the 2 hour lidocaine drip on Wednesday morning at 8 am!!! This drip will reset the neuron receptors in her brain and bring her pain med tolerance back to normal. If (in rare cases) this doesn't work, Dr. Cheng has a back-up plan of a 5 day ketamine infusion that will do the same thing but it's a longer process, the patient is put almost comatose during this and there may be hallucinations...done in a controlled environment it's a safe procedure but I'm truly hoping the first procedure works. Granted, this only buys time, but according to the Neurosurgeon "time and medication" is what it's going to take to get through as the radiation does it's work. We may have to go through this again if her tolerance gets out of control during the up to next 3 years that they expect this to take but, now, knowing where to go and having a Dr well-schooled and very experienced with this she's finally seeing the beautiful light at the end of the tunnel that all your good thoughts, well wishes, positive energy, and prayers is creating. Thank you all for your support. Financial, emotional, spiritual, it's all necessary and we appreciate every bit the same. Your caring has been overwhelming and we thank you and love you all more than mere words can express.
Update time!!! We came up to Cleveland and checked in at the Ronald McDonald House Sunday night. Angel started the "Chronic Pain Rehabilitation" program Monday. She was in tears at the first break and quite upset and angry by the end of the day...this program is certainly NOT what her Pain Management Specialist led us to believe...it is more of a drug rehab and off all narcotics program and this is, unfortunately, a bit premature for her case. I left Monday night as the Dr told me to but came back Tuesday night after numerous calls from Angel and numerous calls to her Pain Mgmt Dr. The meds they were trying to replace the narcotics with had reactions of there own (grinding her teeth) and Tuesday evening she had hives all over and couldn't regulate her body temperature. She looked up the meds given and found a MAJOR red flag interaction with one of the meds she takes daily (they had this list...come on now!) and could have been life threatening if continued. On wednesday I did some calling around here and found a Pain Mgmt Specialist who has had experience with the 2 hour Lidocaine drip and also a 3 to five day Ketamine (sp?) regimen that either will work to reset the neuron receptors in the brain to bring the pain med tolerance back to a normal level. I explained the situation to his nurse and she said he was booked but that she would talk to him and call me back since we are already here. She called back and Angel got a consult at 12:30 yesterday and after his exam etc he agreed to take on her case and even consulted with the director of the program she was enrolled in and they both agreed this was the best next step for her situation!!!! Finally :) Now we are awaiting Insurance approval and scheduling for the procedure. Her Pain Mgmt Specialist in Columbus is more than willing to fax a referral for this procedure.
The folks here at Ronald's said that, even though they "discharged" her (not kicked out) from the other program, we can still stay pending schedule of the other procedure. The sooner the better for her sake.
I got yelled at for leaving her here alone, seems Ronald's has a new rule that any patient staying here that has a potentially life-threatening condition MUST have a caretaker staying with them for the duration...another week off work but, if this helps her, I'll take as long as is necessary and, somehow, make ends meet!
Please continue sending the positive energy, good thoughts, and prayers her way. That helps give us the strength needed to make it through each day.
If you haven't already, or if you've added new friends, please repost so this can possibly help anyone else that may have to deal with this and also so that anyone else who may have already gone through this and can offer any more advice etc from their experiences can share. We all need each other in this world, "no man is an island" or "it takes a village" whichever you prefer! Much love to all, reaching through the screen here and giving you all big hugs!!!
I am SOO looking forward to a new year! Angel enjoyed the holidays (in short spurts). We were in the ER Christmas Eve and the Dr wanted to admit her but, after talking with the Neurosurgeon and Pain Mgmt specialist, he got her comfortable and sent her home after giving her the choice. She ended up back there after the Christmas festivities but they sent her home as she had appointments with the Neurosurgeon (26th) and the Pain Mgmt Specialist (27th). The Neurosurgeon had nothing more to offer than "it's going to take time and medicine to get through this" but that the AVM is starting to shrink! The Pain Mgmt Specialist is referring her to another specialist who has done a 2 hour lidocaine drip to reset the neuron receptors in the brain and bring the medication tolerance down...hoping to get a phone call this week but will follow-up on the 2nd to see what the status is. She ended up back in the ER Friday night, transported by squad again, and diverted from Mt Carmel East to Grant where they admitted her overnight and released her late Saturday afternoon after they were able to get the pain to a more tolerable level. Cleveland Clinic appears to be a go for the 7th, hoping that will be a good experience and offer help she has so needed for far too long. Thank you for all being there for us through this past year, the love and support has been overwhelming and we feel truly blessed to have you in our lives. We wish you all the best for the upcoming year and hope to be able to start writing more positive and upbeat updates as the new year unfolds. Once again, I'm asking that you repost so this can possibly end up in someone else's news feed that might benefit from what she has gone through so far or even someone who may have gotten past this phase and can offer some additional advice and hope. Much love to all...
It's been a rough week for Angel. Last Thursday evening we had quite a scare, it started with her uncontrollably sticking her tongue out and then her eyes rolled back as if she were looking behind her at the ceiling, you could still see the iris/pupils but just barely and then, to compensate I expect, her neck would tilt back and she had no control of this. I called the squad and 2 showed up along with a fire truck this time...quite a scene. They transported her to OSU where they gave her something to counteract any interreactions she might have been having with all the meds (although she hadn't taken her pain med that day), a bag of fluids, iv benadryl, and morphine (two doses) before everything seemed to calm down and she regained control of her eyes/neck. Also, not sure why, her left hand went rather claw-like which was out of her control. They released her around 5 Friday morning. She took it easy Friday, didn't feel like doing anything, even missed a party she really wanted to attend for Mama "M", ypu know who you are and we really did want to celebrate with you! Saturday evening we went to my sister's to make cookie dough and she took it easy there, resting on the couch a few times. We returned to my Sister's Sunday evening to do some of the baking but she really didn't feel well although she tried really hard to get in the spirit and did roll some of the cherry cookies before retiring to the couch. I noticed she really wasn't feeling well so we cut things short and on the way home (Sis lives on the other side of town) I asked if she thought she needed to be seen as we'd be passing right by "Hospital Curve", she said she was having sight problems and her hands were numb so we stopped to have her checked over. Another bag of fluids, nausea meds, and a large dose of morphine and she was doing well enough to come home. She's been to Hyperbarics both Monday and Tuesday and has been fairly stable for now. We found out on Sunday, in talking to one of the nicest nurses there, that one of the meds in her "cocktail" they came up with for when the pain is really intense can cause the uncontrollable tongue thrusting so there will be no more of that one. Hyperbarics scheduled thru Friday this week then she'll be at the end of her 3rd set of 20. We'll be talking with the Hyperbarics Doctor tomorrow or Thursday and she hass her pain mgmt specialist (definitely seeing the Dr this time and not the Nurse Practitioner) appointment the 27th.
Please continue to keep Angel in your thoughts and prayers, we do feel the LOVE from all of you and that's what helps get us through this each day.
If you haven't already "shared" this on your Facebook, PLEASE do as this could help her and countless others who may see it that are facing or have faced the same thing.
For those who are interested in learning more search under Brain AVM and note that hers is in the Thalmus area and pressing on the optical/occipital (?) nerve which is why they don't want to do surgery to remove unless it becomes life-threatening (ie a bleed/stroke etc). I didn't realize that it would take so long for radiation to show any improvement and it's so hard to see her have to continue this battle every day. She is quite the inspiration and will forever be my hero :)
After much thought and discussion between Angel and I, she has decided to postpone the Cleveland Clinic program until after the first of the year. I'll be calling tomorrow to see what date works best. This will give us more time to make arrangements for her to have a "caregiver" to stay with her each night and also to make arrangements for the dogs. I plan on going up every Thursday night as I have to take part in the program with her on Fridays. She'll have the weekends off and her treatment sessions will all be daytime Monday thru Friday..
This head cold she's fighting is now feeling the effects of gravity and heading to the chest which brings on the "barky" cough. I took her to Urgent Care tonight to get her some cough medicine but, since the cough has gotten so intense it makes the headache worse and causes momentary black or white (only) sight and then, following this, spots in her vision. They wanted to call the squad to take her to the ER for a scan to verify the shaking from the cough hasn't caused a bleed...off to the ER we went quicker than waiting on the squad and with the Dr calling ahead. They did the usual bloodwork etc and were really good about doing an MRI instead of a CT since she's had those in double digits (too much radiation). They gave her a couple doses of pain med and nausea med along with the basic fluids. Thank God it only took 2 tries to get an IV in and the second try was a squirter...They wrote for antibiotic and 2 types of cough medicine...Hope she can get a good night's sleep tonight. Thank you for continuing to keep her in your good thoughts, prayers, and all the positive energy you're sending our way. We LOVE you all!!!
Look for another update soon, once we get the new schedule for the Cleveland Clinic...You know what comes next, PLEASE hit share and help get this around the world! :)
Angel is scheduled to start treatment at Cleveland Clinic on the 17th. Hoping to get into the Ronald McDonald House but won't know until I call at 2 pm Saturday the 15th for arrival on the 16th (evening hopefully). I have to be with her on the day of admission and will have to spend every Friday there also. She'll be there anywhere from 3 to 6 weeks and will have all types of therapy etc all day long but then will stay at Ronald's hotel every evening. She'll have weekends off, I believe, and will get the 24th thru the 26th to come home for Christmas and then again also New Years eve and day. Starting January 1st (although they highly suggest we do this from day one) they will require, since she does have a life-threatening condition, she have a caretaker stay with her at night (her room has 2 beds, just like a hotel). This has to be someone she knows and trusts. We have 3 dogs 50 lbs (Bow Wow), 60 lbs (Brutus), and 200 plus lbs (Bernie, still a pup for another few months) that have to be taken care of. There's only one of me...my brother said he could spend a few of the nights with her each week but will have to get someone to take care of his small dog. Anybody want to dog sit or go visit Cleveland (you'd have your days free!)???Anybody know how to clone me??? Any/all suggetions would be greatly appreciated...As always, please hit "Share" and let's get this around the world!!!! Thank you for all the positive energy, good thoughts, and prayers. We do feel the LOVE!!! BIG HUGS to all :)