Bone Mets Thread
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Dee. So sorry to hear the difficulty you're having. Sending hugs. Please keep us posted
Carol. Your offer to Momatt made me cry. I am always amazed at how wonderful all the women here are. Their generosity of help, information and encouragement is truly amazing!!!!!
Thank each and every one here!!!!
Bab
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Oh Dee - take care and keep us posted. so sorry you are going through this.
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MomAtt, no words of wisdom but sending you and Dani big healing hugs.
Babs, I echo what you just said.
Carol, what a generous offer. It warms my heart the amount of caring you show to others.
Dee, thinking of you and hoping they get to the bottom of this quickly and it's an easy fix.
Lynne, where are you? Missing you and thinking of you.
Hugs to all, Annie
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Dee, praying for an UTI!! I keep checking the boards thanks for letting us know.
Hugs Carol
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Dee, thanks for keeping us in the loop, and glad your onc's office reacted so quickly. I'll keep checking back for further updates and keep praying this is something they can dx and tx quickly! (((Hugs)))
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Dee i am so emotional, you having to go to the ER, but it's good they will TEST you out!!! UTI is a good idea. And good you got off Ibr. Warm hugs and kisses galore!!
Aww you all. Carol sweetie, I am def thinking about it. I just was thinking maybe giving this a chance. If we go there and barely started here, it's a challenge. But I am keeping your idea close to my heart, thanks a ton.
Babs dear, thanks so much for your offer also. Def have it in mind.
Linda thx for the prayers. It's unreal.
Annie so nice to see you showing up lately. thanks sweetie!
Yes, Deanna, hmm where do they get the idea that it's ok. I am not calling to chat. BUT when things go awry, when there is a progression EVERYWHERE (even more) in such a young woman, a mere 4 freaking weeks after last PET/CT, yep one gets a phone call. What's the matter with this world?? But i gotta be nice, my daughter needs them to be nice to her, and I want peace! So I just blabber here.
Hey Bluefrog looking good!
Mary, pray!!
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I am sorry for being away for a while. I was down in the dumps and didn't want to spread my bad mood to everyone else. I think I am back to myself now.
I had my CAT scan and bone scan this morning. I should get the results on Thursday when I have an onc appointment. I am hoping for good news, but I am prepared for whatever I hear. My DH and I have discussed all possible scenarios and how we will handle them. No news can be so bad that we wouldn't be able to face it together. After all, I am still alive and kicking. Each day is a gift, and I am determined to enjoy every one I have.
Dee, I am worried about you. I hope that they quickly find the source of your illness and make you feel better soon. As others have requested, please let us know how you are doing once you feel up to it. I pray for a quick recovery for you.
Momall, I don't know what to say. I have never had a PET scan, but I have heard that there can be many false positives. Were you able to get through to the onc's office and get an appointment for today? It all seems overwhelming to me, and I cannot understand why all that information would have been communicated to you in an email. I will add my opinion to Carol's and say that DF's reputation is fantastic, and your trip there would be well worth the time and effort. I think you need to do it for your own piece of mind as well as for the obvious benefit to Dani. My husband was treated with respect by everyone we encountered there. We did not feel that he was "just another patient" in spite of the fact that they see so many people. Of course, he was seen in a different department, but the attitude seemed to extend to everyone, from the doctors to the nurses to the receptionists, and even to the valets in the parking garage. Please give it some serious thought. I am praying for you and Dani, too.
Susan, Congratulations on your recent marriage. Your post and photo brought tears of joy to my eyes. I loved seeing how you are living life to the fullest and not allowing this stupid disease to take over. I wish many years of love and happiness to you and your DH.
Aurora, I have taken your advice and have been floating along on the river of denial. My DH and I spent last week in Long Island, NY. My grandson's baseball team had travelled there for a tournament, so we attended all his games. It was lots of fun. We went to several beaches while we were there. I have always found the ocean to be energizing and relaxing at the same time. We also took a walk on a nature trail that lead to a lighthouse. There was a wonderful seabreeze keeping us comfortable. One day we drove out to the Hamptoms to see how the rich and famous spend their summers. Although most of the mansions were hidden behind high hedges and gates, we did see many summer mansions along the shore. It was a good week.
Lindalou, Were you going to have a rescan of your thyroid or am I remembering incorrectly?
Love and prayers to all,
Lynne
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Lynne, so glad to see you checked in! Remember we are here for you through the good and the bad. We all have times where we're down in the dumps but I think we're good at lifting each other up. You could never spread a bad mood, we know the cheery thoughtful person you are. It's normal to feel like this at times, just let the feelings out, it's very healing! Sending all my positive mojo for excellent scan results and some extra big hugs for you today.
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Hi Lynne, So good to hear from you. I am glad your scans are behind you. You are so level headed and bring so much to this forum all the time. I will pray you get the news you want to hear. I bet you had a great time with your grandchildren and baseball! Are they Yankee Fans? Grandkids have a way of making you forget where you are sometimes which is a good thing!
It was 100 degrees in Boston on Friday ( I had my monthly appt,) but was not humid. Glad you got to see Long Island as well.
I want to give an example of Dana Farber.... My MO is so focused on making sure that I get treated in all areas.. especially with my anxiety. Imagine a doctor not letting you out of the exam room until you have stopped crying and then followed up with you the next day with a phone call? It was after my appointment on Friday that I came to the conclusion FINALLY that I am going to work on only the things that I can control. She helped me with that as well. I would like to get off a little weight (10-15 lbs not so little) but it will help me and I will enjoy a shopping spree after. I have been doing Vegan and she encouraged me to add in fish- so I have... I can do that- so I did, I can eat better so I am! MO also told me walking is great but she rather I walked for 30 minutes where cardio kicks in then to walk for an hour where there is no huffing and puffing. So today I huffed and puffed and she was right, later in the day I was energized.
I also love the valet at Dana-- They walk away before you can even tip them and hold every door open for you and then close it. Now I get my tip ready before they walk away.
Hugs, Carol0 -
Lynne, I am glad I was able to encourage you and really happy that you enjoyed your week away from it all. Now hang on to that attitude and enjoy each day to the fullest. Don't dwell on test results, tms or whatever, just focus on today and right now you are feeling happy and that's all that matters.
Everyone, as usual I read your posts and pray, send hugs or send positive vibes accordingly. I am holding up nicely myself having had a PET scan on Wednesday and Friday when I went to the clinic for blood tests I ran into my onco who said she had already viewed the scan and she said I'm doing "really well". No specifics which I will ask for when I see her on the 3rd. I would love to hear NEAD but knowing my doctor she'll refrain from saying that much regardless of how "well" I'm doing.
The report should be available to me on the patients portal on Wednesday so I'll read it and be ready for questions on the 3rd.
Take care all and hope for good scan results for those waiting and for no pain/se's for those enduring them. momATT you must be getting tired with everyone insisting going to FB but I have to agree with them, an specialized cancer center is always better than a local onc. Ok last time I mention this I promise. Sending you and Dany (((hugs))) and prayers for you to find solutions fast.
Aurora
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I just love reading this thread. I don't have a great deal to offer as I'm only 8 months out from diagnosis. I do take everyone's stories to heart and say a nightly prayer for all of us.
I just really wanted to comment to momallthetime. I really do think DF maybe able to give you better care. I see the director of clinical trials at DF. She and everyone else I've encountered there are fantastic. I am heading to DF this Friday for treatment if you want I would be more than happy to talk with my dr about getting you an appoi
I have kids around the same age and would be willing to take them into Boston and meet you and the kids at the children's museum whilst Dani is at DF.
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hi all,
Really, really long day, finally home, thankfully they didn't keep me at the hospital which at one point I didn't know if we would make it home today!
So I have neutropenia, WBC of .67 which is apparently quite low. So they have taken me off Ibrance for the next 2 weeks & they will decide on the 8th whether I will be taking the full dose or a lower dose. In the meantime I'm on 2 antibiotics. thanks everyone for your support... I will go back & read everything tomorrow, but for today, I need sleep, g'nite all, cheers, dee
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Gosh ladies, there's so much I'm missing these days. All I can say is how sorry I am for those of you suffering and having quality of life issues - I wish I could wave a magic wand and heal all our bodies. I do believe in miracles so perhaps my prayers will be answered.
I hope you all feel better and soon.
Amy
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Good to see that you're home Dee! (((Hugs))), and get some rest! Hope you'll be feeling much stronger tomorrow.
MomATT, reading Bosco's lovely, genuine offer to help, as well as Carol's supportive urging... Do you think just maybe the universe is conspiring to get Dani to DF? From afar, it sort of hit me like that tonight -- like maybe that's one reason you found BCO and these women.
Wonderful news, Aurora! I'm beaming knowing how you must feel!
Lynne, I'm so sorry you were experiencing a down in the dumps episode. I understand that sometimes it's hard to share those thoughts even here -- just hard to even put the thoughts in words sometimes. I'm glad you're feeling better, and I hope and pray you get good news about your scans!
Annie! Good to see you!!! I've missed your lengthier posts.
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MomATT - As a counterpoint to the very wise women of this forum, I want to share an alternate perspective. I don't see anything wrong with your current oncologist except for a small error in bedside manner. The perfect oncologist doesn't exist.
You worked hard to find this doctor. She is extraordinarily qualified. I would at least work with her until you can hear out her full diagnosis and treatment plan and see how you feel about it then. Unfortunately, one has to take into account money, time, effort, distance and all the practicalities of dealing with a treatment protocol. We are human with limited resources for this fight, journey, drama, pain in the neck. Consider carefully whether getting regular treatment in Boston is feasible for you.
I live in the boondocks with limited options for well trained oncologists. I met with a few of oncologists in the only major city within 100 miles (it's 99 miles away) and two of them turned me down because they won't oversee treatment of people who live more than an hour away. It seemed like a wise policy. I ultimately went with a doctor 35 miles away and I am currently moving my diagnostics to a closer hospital.
At the same time, given the complexity of Dani's case, a second opinion at DF, when you are ready and have the time, would be very well advised. I can't be more impressed with what I read and hear. Spending some time with Carol would be a blessing, and a reason to travel, in itself. I myself will be getting a second and/or third opinion out of state and I have to go much farther for it.
I wanted to put my perspective out there for you to consider. However, there is never a right answer with Stage IV cancer, only what feels right for you. I hope the answers and options for Dany become clear as you work through this. Please keep telling us how this is going. You are in my thoughts and prayers.
Dee - I had the UTI from hell my second cycle on let/ibrance. I did not know because I had never had one before. My doctor says that the letrozol makes the lining of the urinary tract thiner so women become more susceptible to UTIs. UTI could certainly be a piece of this. I suspect there is more than one layer to this mystery. But I am hopeful you will have it sorted out by the end of the week. Hope you wake up a different person after the antibiotics have had a chance to kick in.
All - Bone Scan/CT Scan tomorrow at a different, closer hospital. Total different drill. Last time I got IV contrast. This time I get oral contrast. I don't know if I get the IV as well at the time of the scan. Will see tomorrow. I am entirely uneducated on oral vs IV contrast and too tired to figure it out. If anyone knows the difference, I would be very interested. I am a little concerned that this scan won't be comparable with my previous scans. They won't be from the same machine using the same protocol. I want to switch to a closer hospital (see above discussion of being a human with limited resources) and it seems the new hospital is already doing things very differently. But the scans are so uncertain anyways ...
I had chalky berry flavored sludge for dinner and I am now sipping another one before I go to sleep. Berry flavored kaopectate. Blech. When I was first diagnosed, I swore I would go through anything to see my kids graduate from high school. Now I complain about everything, even a lovely shake.
>Z<
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Dee so glad you didn't have to stay in the hospital I'm hoping for you to feel better quickly
Aurora that's great that the dr said scans were good. We're all waiting to hear more!!!! Happy dance time!!!!!
Z sending positive vibes for good scan results
Bosco your generous offer to Momatt and Dani just blows me away as did Carols. Once again you BCO ladies amaze me!
Lynne glad you're back and most importantly back to yourself!
Babs
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Dee, What an ordeal you have had! I'm glad you are back home and off Ibrance for awhile. Now to recover as you wait to discuss all with your trial MO.
Lynne, Yes, my thyroid was checked during my CT last week and it is stable. Did you get a derm appt yet? I had a mole removed a month ago that turned out to be an atypical mole so I was relieved. Good luck with scans today.
Aurora, running into your MO was good! At least a quick ( and good) review for you.
Z, Hope your scans go well for you. I always get oral contrast and IV contrast with CT.
Momall, I always visualize you as a momma bear protecting her cub!
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Deanna, thank you, you're so sweet. It was a crazy couple of months for me and the reaction I had to my last infusion was horrible. Just had another on Friday, so far so good, fingers crossed! My niece's wedding is on August 6th and I need to feel well.
Aurora, I'm so happy to hear your onc gave you a quick heads up on good scan results. You must have breathed a sigh of relief. I feel so good that you're doing really well. ((((Hugs))))
Dee, I'm so sorry you're white blood count took such a hit from the Ibrance. No wonder you felt so awful. Rest, take your meds and get better really fast. I'm sending you virtual healing hugs and a lot of love.
Hugs to all, Annie
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Hi all,
I don't post on here often because was posting on Ibrance/let for a year and now on Faslodex as I try to figure out that treatment. Anyway, see lots of the same wonderful, supportive people. Prayers and hugs for all our challenges.
MomATT, just my 2 cents worth. DF sounds like a wonderful place, but you might try to allow Dani's current onc to explain her plan and figure out how that office works. (Echoing z here.) my own experience is that I was at the same onc office through both bc diagnoses, but when the mbc dx came, it was a whole new world. I had to learn how to communicate regularly with my onc, np, infusion nurses, appt people etc. And in January my onc changed her location. I followed her, of course, but again I had to relearn who to communicate with,etc. it takes time. I know Dani's case is extreme and I feel your stress. But maybe giving this onc some time instead of starting over would be beneficial. You always have DF as an option. Prayers!
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Good morning all,
Momall - you're truly doing an amazing job! And amazing ladies on this thread offering support.
Aurora - Looking good girl! Very happy for you.
Dee - Glad you got to sleep in your bed. Nothing like it. Do you know which dosage of Ibrance you're on? I hope you feel better real soon.
Lynne - happy to see you around. I still get those down in the dumps episodes once in a while and withdraw when they happen. It's important not to stay in that frame of mind for too long.
Annie - At last no major SEs. Enjoy the wedding planning.
Z - praying for good results!
Bone scan scheduled for tomorrow and CT scan on Thursday for me. Dreading the iv contrast but I have a prednisone/Benadryl cocktail. Trial nurse said I will be closely watched for any allergic reaction. Keeping fingers crossed.
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LindaE- Good luck with your scans- I know how much we stress when they have to be done and on top of that you have to worry about the allergic reaction you get. I am happy they have a handle on it for you.
Dee- Glad you are home and hoping they find out what caused your fever. Please post and let us know that you are feeling better.
Bosco- look for a pm from me....
Have a great day everyone !!
Hugs, Carol
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Just skimming the last few posts, so apologizing in advance for not responding to all, but I need to leave shortly for an appt. But I wanted to clarify my post to MomATT re. DF. I was not suggesting that you dump your current onc, MomATT. As Z and the others have said, so far, she's seems to be doing a good job, albeit the delivery of some news, which I'm cutting her slack on due to what sounds like an incredibly busy schedule, since she barely got Dani in. However, I also feel it might be prudent to get that DF opinion now. It doesn't mean you have to switch Dani's care to DF on a permanent basis. Most facilities in this league take patients from all over the country and world for consults -- just to cross check Dani's current regimen and recommendations, just to be sure nothing important about her case has been missed. Also, because DF will have their finger on the pulse of new research and trials, Dani would then be on their list if there's a logical match for her situation. What concerns me most is the amount of tumor burden in her liver now -- and that's why I still feel it would be beneficial to get any input or different perspective now.
Z, I totally get why an onc in NM would not want to be the primary onc for a patient 100 miles away. It's the same reason UCLA recommended that I also have a local onc -- not just for monthly labs, shots, etc., which my UCLA onc doesn't need to spend her time on, nor do I need to drive 3 hrs. to get -- but in case I was to end up in the hospital (as I did in 2014). In that situation, it's very important to have a local onc who knows you and your hx. But most major cancer centers do accommodate distant patients, whether that's 100 miles (my situation, but a 3 hr. drive due to LA traffic), or several thousand miles, such as your upcoming check in with one in the NW, I think. In fact, UCLA is great about piggybacking appts & scans for me because they do this all the time for out of town patients. So just wanted to elaborate on this a bit because I so often suggest checking in with a DF or MSK or UCSF or UCLA, etc. Many times, you simply take that information back to another onc, which is what I had pictured for MomATT. Or as in my case, you can make the onc at the major facility your lead onc (so that they'll make time to see you several times a year), but you also work with a local onc who is okay with your need for that additional input.
Anyway, Mom, if you are happy with Dani's current onc, then ignore this, because I don't need to confuse you anymore! I just wanted to hopefully illuminate in general the in-between option -- not switching oncs, but just getting a second opinion to glean every bit of helpful information.
Gotta run. More later...
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Good morning everyone,
Dee - praying that you feel better soon! The WBC issue is a concern for many on these drugs.
MomATT - Sending good thoughts to you and Dani...so sorry to hear about more progression. Hoping you receive helpful plans from the doctors to address things and buy some QOL and time. Going through this with your child is beyond awful. We are all here for you...from around the world.
Lynne - Good to see you!
Good luck with scans and appointments this week ladies!
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Deanna, I would like to add that my situation was exactly that SITUATION you are referring too in Oct 2015 when I was diagnosed stage 4. My local MO gave me the diagnosis and I went on to DF for only a second opinion. They had their pathologist give an opinion and then suggested a treatment plan for me. DF treatment plan was Ibrance/let Home was Xeloda and rads. ( I ended up doing more rads than DF wanted me to do but found that out too late). From what I know now, I bet I would have never had rads period. My insurance at the time would only cover a second opinion at DF no testing there so until I got new insurance at the first of the year where I could have testing done at DF I did everything at home. I had scans and blood work from October-Dec done at home and DF also kept close tabs with me and spoke with my MO at home. With that being said, when my cat scans were done at home not at DF in December to see how my treatment was working and this was discussed with home oncologist, DF also got a copy of scans and they were not happy with the quality of the scans and without a bone scan to compare them too they were not eager to say anything was working for me. Although my scans showed no progression my TM went up and home MO wanted to switch me to Xeloda in Dec.
My plan was to keep my MO here for blood work and xgeva shots and do everything else at DF. ...BUT.... I have 6 grandchild. and 3 daughters close to DF so it gives me a pushed excuse to go visit as often as I can, so everything is being done there, except for CBC's when needed.
Each case is so different. I am learning so much as time goes on. TM's are not indicative for me as a guide so they go up and I am scanned every 3 months. I question my MO about them so much that she doesn't want to tell me them anymore. The good news is I have no pain, and I have not had an advil in 3 weeks and I am walking over a mile everyday. What the scans will say at the end of the summer will tell more. Every time I see my MO at DF they are enthusiastically informing me of so many wonderful trials that are available and I just learned of new more reliable tumor marker that is in trial right now that they are excited about.
Then I think back to December... as I sat in my local MO office. "Carol, Your TM's are up and we should now go to Xeloda." I said what is Xeloda? That was 8 months ago- Since my scans this past May I have no new progression and healing mets. That is why I preach ....and preach... I pray that everyone looks at me as someone that wants to share a positive story and nothing more than to get to a place like DF - they teach at Harvard... they are hired after 1000 and 1000 others MO are not. They are the cream of the crop- they study and teach this...everyone has a specialty in breast cancer... and if something isn't working for you right now... or in Dani's case... a new protocol .... have that protocol looked at ... Time is not our best friend here.
Hugging everyone,
Carol
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just giving an update,
My wife had her ct which didn't show anything so the doctors recommended an MRI. She had the MRI Saturday we got the results yesterday and my wife's MO indicated that the MRI showed some spots on the tail bone that correspond with the PET scan but didn't show up on the CT scan that they want to biopsy to determine if the spots are cancer.
On somewhat better news tomorrow will be her last radiation on her breast and neck. We are both looking forward to that.
When she does the bone biopsy and we get the results I will let you all know.
Ken
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Thanks Ken for the update she is in my prayers.
Hugs Carol
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MomATT I'm so sorry to hear about Dani's scans I would definitely take Carol up on her offer. Get another voice going so you can get the treatment she needs without having to chase after it or phone them. So frustrating.....I'm sending a super big hug to you and Dani from Canada. I am crossing my fingers that you get some good news it's about time for some.
Dee I'm so sorry to read about your difficulties though it does sound like some sort of flu. I haven't had any issues with the Prom infusion. Sounds terrible I hope that they can get this figured out fast so you can get back to your gardening. I wanted to ask you as well if you have heard of a group on Gabriola island called Come alive I learnt about this from a friend on one of the paddling boats. It's some sort of retreat place? Anyway I'm hoping you will feel better soon.
Wendy
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How long are these paragraphs allowed to be??????
What an incredible group of intelligent, warm, thoughtful, articulate, opinionated (love that!), sweet ladies do we have here!! This is truly remarkable. You guys make me laugh, cry. I feel you with me every step of the way. I call you "my people". I was even talking to the Ins. lady and arguing about the tx, and I said my people...You are all definitely sharing the heavy load. THANK YOU!! Honestly I could not do this without you. You guys give me strength beyond. What if I tell you that as of this hour it is NOT confirmed approval for Navelbine/Herceptin. Insurance claims that doc only sent out request Monday pm, she is doing a big favor and trying to work w a supervisor to get it expedited. Yep. I did not tell Dani. She is having an MRI of the Brain right now. As far as she knows tomorrow is D day, and I am praying (literally) it will be. Can't even go there. (they did know since last wk that she's comg in tomorrow!)
Having said all that, last night NP called back, after I literally begged doc to call me. Cute huh. Anyway, she basically said that they are still on board with this TX, progression or not. She said I should come in Thursday and then speak with Onco. They guard these people as if they would be Kings. But as you mentioned here, it's the "SYSTEM", you know those horror movies, everyone is a robot. Yeah. I think that's what it is. Unfortunately, I know that when someone is not well and docs are not so… how shall we say it, sure of what to do they tend to detach themselves. And she did not get a chance to meet them in better circumstances, so I think it makes for a mixed recipe of emotions. And yes, thank you very much, I am trying to learn their ways. I have expectations, expectations of how I treat or would treat people, my hubby has a business, I know how he treats people, and when I don't see that giving it strikes me as odd, but I have to take a step back maybe two, and I am taking a deeeeeep breath, which is so not my style, and I am trying to just hope that things do work out.
Lynne it's a tough ride. I don't even like the word journey. It's not peaceful, not serene, it knocks and it knocks you. It's downright ugly. The nights are the worse.It's so great that you have a close relationship with your hubby and you are there for each other. Not to compare myself to your situation, but even one degree off, I could tell you that I wish I would not have to move about. But I have to. I understand the psychology of it, that by needing to do just that, I am being saved maybe from going to a very dark place, BUT I dream of just vegging out sometimes, but I have to be ON all the time, specially for Dani. The nights are tough. I make sure I am covered with some sleepy tea, whatever some pills, otherwise …but the best is to laugh and make fun of things, like this ludicrous car accident that we found ourselves after a whole day with docs. Ran out of the car, left the driver to wait for the police, and having to navigate neighborhoods we were never in, trudging from train to train, we would not have done it if we were not stuck. It was funny. MY warmest hugs, and we are here with you.
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Carol you do make me jealous! It seems like a fairy tale for me right now. I may even get to you tomorrow, I am thinking about it, you guys understand all the points. Words are not enough to tell you my appreciation. And I am digesting what you guys are saying.
Bosco thank you also for your offer, this is truly unbelievable. It's just that I am thinking, even if we do go now, the place that we are at I am not sure how cozy they are to the idea of taking "orders" from DF et all….Something to think about.
Deanna I have no doubt you'd take us over to your place. I know that. You guys have your heart in the right place, and I am so moved, as is everyone here, you are all very special people.
Zar – looking forward to your visit to Seattle. You are like a warrior. All the details, she needs the support, hubby, her little ones, who are her life, her sis that help her and me. So logistically, they would have to go to camp/school, and it's really complicated. But a trip there is something I am rummaging in my mind. Z- When will you know your results?
When I was reading the thread, I cannot tell you the emotions. Tomorrow, I hope they tell me something more.
Linda, Annie , Babs, Dee, Bluefrog, Mary, Lindalou, Wendy, Aurora(hope to hear good news), Amy,Kaption thank you, thank you. Please do pray.All I mentioned above goes to all of you, I am listening to all your echos. I really hope I did skip someone.
It comes down to: I don't know how else I could get their attention, I pray to God they are not gonna screw this up tomorrow.
Wishing you all a great night, please accept huge warm hugs!!
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((Mom)) Sleep well.
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