1st x grandma Posted June 27, 2009 Author Report Share Posted June 27, 2009 Continuation….Part 21 We were advised that the CT from that morning showed that she still had a lot of fluid; he wanted to do the surgery that Tuesday if at all possible, at least this was his current plan, the CTS would continue daily and another MRI on Monday morning. He would then have the most current test to review with his fellow doctors on Monday and see what they needed to do next. He advised that he would prefer to go in and do a small incision and remove the tumor via laser procedure vs a full surgical opening if at all possible, but he would know more hopefully on Monday. He asked us again about the medical problems that caused us to take her to the ENT, and we talked about the different symptoms that a tumor in the brain could cause. When he went over some of the symptoms, we found that she had had many of them for years, even those that currently had her under the care of the ENT. It wasn’t as if we ever ignored any of them, nor did her pediatrician, he had been her doctor since she was born, and he knew her well enough to know, when we brought up a symptom or concern, he didn’t take it lightly. I use to tell him and my daughter, that she was the only kid I knew who by age 13 had, a pediatrician, dentist, orthodontist, facial specialist (tmj/jaw), ophthalmologist, sports doctor, and physical therapist. Some of her symptoms, like when her left leg would sometimes buckle, shoulder and back pain, the dizziness, hearing problem, difficulty with balance, sever and then more frequent headaches, or sometimes when she would lose feeling in her leg or arm as if her limps had fallen asleep and tingled, blurred vision, even seeing spots of light, peripheral vision that had caused her to run into walls or doors when she would turn corners. Her doctor never wasted anytime in referring her when there were symptoms that concerned him, that’s why we knew that many of those same symptoms her doctor was now mentioning to us had already been checked out by specialist in their fields, but they had diagnosed her with different things, and certainly much less sever then what she/we were now facing. I was in disbelief at what havoc this tumor could have been causing in her, even the possibility of her episodes of passing out, might have been caused or contributed to by the tumor. There was no way of knowing how long she had the tumor, unless we had MRIs to go back to. I use to like to watch Mystery Diagnosis at night, and this time I felt like we were smack in the middle of one of their episodes. Over the years the same symptoms we now were learning could very well be attributed to the tumor, had been diagnosed as migraines, inner ear problems ( menier’s disease), eating habits, possible sports injuries, exercise injuries, it was unbelievable to me. Her doctor advised he would be by in the afternoon to check on her, and that he was still waiting on lab report for the fluid he had sent for testing, he didn’t expect to get those now until Monday. One of the symptoms the doctor mentioned, really surprised me, and I would never have associated with a brain tumor, it was possible for the brain tumor to affect her personality and cause behavior changes. As I thought back to the last two years or so, I had seen a big change in her behavior, it had started towards the end of her freshman year, and as the weeks went by; she became angrier, difficult to talk to, seemed to be in bad moods often, her sophomore year was the worst; I had just chalked that one up to teen rebellion. Now I wondered if it all had to do with the tumor or how much of it was. Thoughts flashing through my mind of everything she had gone through and wondering if we had missed some very obvious signs, was there anything that could have alerted us to the severity of the situation? Did we do everything possible with her different symptoms? My mind felt like mush, I kept trying to replay the last couple of years, how many doctors had she seen, how many test had been done, it just wasn’t making sense to me that we could have missed this. Shortly after he left, they brought my daughter a liquid diet breakfast, “humm, looks appetizing” she said, well her humor was back, that was a good sign. Her dad left to go take care of her dogs and I sat there with her, again I found myself wanting to ask her how she felt about all that had happened to this point, what the doctor had told us, but I guess- I knew I was not really ready to hear her responses. I knew I was trying to digest it all, and I figured she was too. I probably would have welcomed the ability to numb my feelings, put my thoughts and the pain I felt for my child in a locked box and place it on a shelf, not have to deal or touch it again until all was behind us. I knew the days to follow where going to be hard, it seemed like the challenges just kept piling up, I had to search far within and pray constantly for God to help me remain strong for her, I could be pretty stubborn (like my daughter) and I was going to have to use that trait to help me and to help her get through whatever laid ahead of use. To be continued.... Quote Link to comment Share on other sites More sharing options...
hkingkong Posted June 27, 2009 Report Share Posted June 27, 2009 I have recently felt like some doctors diagnose minor things when there really is a big problem. I don't think they investigate enough. I'm glad at this point you were getting some answers. Heather Quote Link to comment Share on other sites More sharing options...
1st x grandma Posted June 29, 2009 Author Report Share Posted June 29, 2009 Continuation….Part 22 My daughter’s OB came in a short while later to check on her, she was already aware of all we knew, and she would be part of the team in discussion with the neurosurgeon and the other doctors on Monday, her input was invaluable, especially with the fact that my daughter was pregnant, all medications had to be run through her before they were administered. She advised us that she was going to put in orders/request to have a nurse from the maternity floor come up daily to monitor the baby’s heart beat. My daughter’s nurse came in to take vitals and check all the other items, so my daughter’s ob told my daughter she would be by later to check on her, and she asked me if I could step outside for a minute. I followed her out, she wanted to make sure my daughter, both her dad and I were doing ok, and asked if the neurosurgeon had told us that there was unfortunately a big possibility the baby might not make it? I told her we were doing as well as we could be and that he indeed had mentioned it to us the night before right after the MRI was done and tumor found. Wanted to know how my daughter had taken the news, I told her that she listened to him, and seemed like she understood. I told her that he had mentioned that they would do everything possible to keep the baby safe, but we knew there were no guarantees and my daughter’s needs would come first. I told her that I wanted them to do everything they could to save her baby, but at the same time I wanted to make sure that no short cuts were taken with her, “in other words” I said,” if there is a procedure that needs to be done to save her life, but that could possible cause her to lose the baby, then they need to do the procedure, I hope and pray it doesn’t come to that, but we can’t lose them both." She understood and assured me that they would do everything to pull them BOTH through this ordeal. She would be back later to check on us and she left to add to my daughter’s file the request for the daily baby monitoring. My heart ached having to share with her and more so to verbalize the thought that had been whirling in my head, I felt like my insides were being pulled in all directions. I stepped back into the room as Elizabeth brought in the neurologist that checked on patients on that floor, she introduced him to us and updated him on my daughter’s condition, standing there listening to her share with the doctor the events that led us there and how she was currently doing, I felt like it was someone else they were talking about, it just still seem unreal to me, for her, for us to be there, but if it makes any sense, I would have rather been there, then what would have been the other alternative, I would rather be keeping vigil over her and waiting for that surgery than having a vigil for her. The neurologist checked her strength, legs, arms, grip, again the questions were asked, did she know what day it was, where was she, why was she there. Little did I know it then that this would become a normal pattern that was starting, both nurses and doctors would go through the same routine of checking her strength and asking the questions of what/where/why, numerous times a day. Once the nurse and doctor left the room, my daughter and I sat there and talked, not really about anything in particular, we were getting good at small talk, this was safe, we didn’t have to tap into emotions that were right at the edge of over flowing and spilling out. We talked about her sister’s wedding, about her favorite subject, her little cousins, she felt bad because we hadn’t taken her cousin to Sea World like we promised. While we were talking, my cell phone rang, I looked at it ready to answer thinking it was her dad, but I froze, couldn’t believe that I literally froze when I saw the caller ID, it was my mom, I ignored the call, my daughter asked me who it was and I told her. “Does grama know I am here?” she wanted to know, “nope, I haven’t told her yet” I replied, “mom when you tell her, do you have to tell her I’m pregnant?” I looked at her, and I know I gave her a smirk, that smirk I had been giving her the last several months when she had asked me the same question, it was one of those looks that said, well little girl you put yourself in that position, what do you think? I told her that I probably would, “oh mom, she is going to be so mad at me, I can already hear her say it, ay Lauranda, que muchachita, and shaking her head.” (Translation: oh Lauranda, oh little girl). My mom had left me a voice message, must be important I thought, she hates leaving voice messages unless it’s important. I listened to her message and she asked me to call her, she also wanted to know if everything was alright. Then I remembered, I hadn’t talked to her since Wednesday, I am the only one that calls my mom almost daily, sometimes it might be every other day, but never longer than that. So I knew why she was calling, it was unusual for me to go this long without calling her, she was worried and wanted to make sure everything was ok. I told my daughter I would call her grama a little later, not really planning on telling her (my mom) anything on the phone, but try and relieve her concern. Meanwhile I was thinking- could I do that without my voice betraying me? Would I be able to hold it together and hold off telling her until I could see her? Gosh, this was really eating at me; I thought I was strong enough to focus on the light instead of the dark shadows. I also knew we didn’t have to do it alone, if I could just get past my anxiety of having anyone else worried, we could be surrounded by people that loved her, us, and I knew this would make it easier to carry the load in our hearts if we share our burden, our family would give us their support, that support that would give us added strength and we needed the prayers, lots and lots of prayers. The last three days had been tough on the three of us, we now needed prayers and strength in numbers, the power of prayer could do wonders I knew. After all, my mom was the strongest person I knew, I could certainly use a fourth of her amazing strength, I just had to get past my own fear, I told myself. To be continued.... Quote Link to comment Share on other sites More sharing options...
1st x grandma Posted July 2, 2009 Author Report Share Posted July 2, 2009 Continuation…Part 23 My husband came back in shortly after 9 am. We updated him on the visits from her OB and the neurologist. I didn’t share the conversation outside my daughter’s room with him, didn’t want to tell him in front of my daughter. He asked me if I had decided when I was telling any of my family, boy was he persistent with this…..I am procrastinating and he just kept pushing the issue, I told him I was going to, I just needed to work up the courage, I asked him if my mom had called the house while he was there, he said no, what a relief I thought. He told me that he was due to play (guitar) at a candlelight (service for retreatants ) that night, “You’re not going to go are you?”, I know I didn’t give him a chance to answer before I told him “ they will have to do it without you”, the words just came rushing out of my mouth, he knew he couldn’t go, but he said my nephew was supposed to go with him and help them play (musical group). “What do I tell him, I am not going to go, but I don’t know what to say” was his concern, I told him to call him and just tell him that they didn’t need to go after all, my nephew would not ask for any more info. (he is sixteen). He also asked me if we should advise our pastor, “he could come and give the anointing of the sick before her surgery” he said, I told him that was probably a good idea, and I asked him to call my nephew first, then he could call our pastor after we notified family. He left to call my nephew and to set up the cable for my daughter. While he was out I told my daughter that when her dad returned, I was going to call her uncle (my brother), let him know what was going on and see if he could go with me to tell my mom later. How was I going to communicate it to him? I wasn’t sure, I just needed to face it head on and hope for the best simple (though it was far from simple) way to communicate the reality of what we were now facing. I knew there was no way we were going to be able to spare or prevent any of our family from experiencing concern and even pain for my daughter and us. I just wanted to be able to get through the initial conversations with them. If I could have avoided it, I would have done it in a minute, but I knew this was not an option, I/we needed the support of our families. My daughter fell asleep shortly after they gave her the morphine, and I sat there watching her, looking at all the tubes and monitors she was hooked up to, and wishing she did not have to go through this ordeal. I found myself like I had done before, sometimes thinking back on our life and thinking about all those things that I thought had gone wrong and all the times I knew I had failed. Focusing on my career, spending those endless hours on the job for so many years, being that workaholic that I knew I was (though never would have admitted it then). I had sometimes questioned over the last couple of years if I had made the right decision to change that, to leave that behind and focus on my relationship with my daughter, yet it seemed like things were not turning out like I thought they would. I had lost so many loved ones in my life, but God had given me another chance with my daughter, I knew it was his work that allowed us to be there when she was the sickest. And now the memories help me to remain grounded because I could also remember the positive aspects of time spent with her, the memories of her last year in jr. high and all the events we had experienced and enjoyed together, (many due to being head room parent), the ability to be at all her games, both in town and out. Had I remained working full time in a demanding job, I knew I wouldn’t have had that time and certainly not those precious memories, so I knew I had made the right choice, this was just a small set back, I told myself. As my husband walked back in the room, and brought me back to the present moment, I thought, wow your back quick, but he had been gone a good while, I guess I was thinking, dang it, I have to go make those calls now.. I kinda wished he had been gone a little longer, giving me more time to procrastinate. I wasn’t trying to avoid my responsibilities, (well ok, maybe I was a little) I just knew that when I made that first call, I would have to make more, and with each call someone else's feelings and thoughts would start to deepen into that world of the unknown for my daughter and what possibly laid ahead. He had called my nephew, I was right, he didn’t ask why, cable was purchased. My daughter was still sleeping, I felt her dad needed to be there with her for a while; I needed to make some calls. I didn’t want to leave her, but I had to, because now it was my turn to make calls, so I reluctantly left in hopes of finding a quiet corner somewhere close by so as not to be too far from her to make those calls. I found that the waiting room was not occupied, to my relief; I went and sat at a far corner, pulled out my phone and held it in my hand for the longest time. I guess I was trying to mentally put a dialog together, how much do I say? What do I say? How do I say it? Nothing I thought of sounded right, so I would just have to do my best and hope that it all came together once I was on the phone. I dialed, and as I heard the phone ring in my ear, my heart started to beat faster, I came close to hanging up, when I heard my sister-in-laws voice on the other side, I gave her my usually greeting, asked about the kids, there was that small talk again, trying to act as normal as possible and finally asked if my brother was available, she told me he was playing golf, and would be home around three or four. I knew he played golf on Saturdays, but I guess with everything that was going on, that one little wrench hadn’t crossed my mind. I didn’t know whether to call him on his cell or wait till he got home, or go ahead and tell my sister-in-law. I knew she would be crushed; my daughter is very close to her aunt and sees her as another big sister or a surrogate mother at times. Do I hang up to give me a chance to decide what to do, I thought, but I knew if I hung up- I would lose my nerve and maybe delay more then I should. To be continued...... Quote Link to comment Share on other sites More sharing options...
1st x grandma Posted July 5, 2009 Author Report Share Posted July 5, 2009 Continuation….Part 24 I decided to tell her. I asked her were the kids were (3 & 1 yr old), she told me they were watching cartoons, I asked her if she was by them, and she told me that she was in the kitchen, (which meant they were in the den), I told her I needed to share something with her, if she could do me a favor and sit down. “Why, what is wrong”, I heard the concern in her voice. My sister-in-law was aware of my daughter’s health concerns, once we had shared with her that my daughter was pregnant, my daughter would keep her posted on her doctor appointments and her health. My sister-in-law asked if I was ok, I asked her if she was sitting and she told me she was, I started by referring back to my daughter’s morning sickness (at least what we had thought it was) and to her headaches, I told her that though we had originally thought it all had to do with her pregnancy, it actually didn’t. I shared with her the events and what had happened within our family the last several days, starting with Wed. night through the morning prior, (I knew I was sharing all this in an effort to really delay the most current situation), I forced myself to continue, I told her they had run test and it wasn’t a problem with high blood pressure nor the baby. “Is she ok now?” she asked, “are you at home?” “No,” I told her, “L, we are still at the hospital with her, she was admitted yesterday morning after we brought her in.” By this time I had a huge lump in my throat, and wasn’t really sure I was going to get through the next words, after what seemed like a long pause. I told her that they had done a CTS and found a problem with a blockage, it had caused fluid to build up in her head, “that’s what was causing all her headaches and making her sick to her stomach so much.” I told her, I heard her gasp and she asked me if they knew what the blockage could be. My next words to her tumbled out in sobs, “yes they do, Oh God, L, she has a brain tumor, they have her in the NCCU, it’s the neuro critical care unit.” As soon as those words were said, I broke down, and couldn’t speak for a little while; she gave me a chance to compose myself, I told her the doctor was planning on surgery that following Tuesday if at all possible, I told her about the procedure they had done on her the previous morning to start to remove the fluid in her head. I didn’t want to tell her that they told us she may not have made it if we hadn’t brought her in when we did, I had given her enough or maybe too much information and I knew she was, as we had been, trying to take it all in, I asked her if she was ok, I knew she was on the other side of the line, because I could hear her breathing, I was concerned that she would break down and scare the children. She said she was ok and asked me how we were doing; she just couldn’t begin to imagine what my daughter had been going through, and us. She asked me if my oldest daughter knew, or if my mom knew, and I told her that I hadn't told them yet, that she was the first to know, “actually, this is why I was calling, I want to see if R can go with me to tell my mom, I don’t want to tell her on the phone, can you have him call me when he gets home?” She said she would, and asked if we were ok and if we needed anything. “What can I say, these last few days have been a nightmare, but we are ok, we could use lots of prayers,” other than that we were good and I would call her later. I pulled myself together (just to fall apart again and again) and I called my daughter’s school counselor, gave her the grim news and asked for prayers, asked her if she could let her teachers know, before I headed back into my daughter’s room, I called two of my co-workers and let them know all we knew to that point. One of them said something that struck me, she said “thank God you were there”, and I thought how many times we do think that, Thank God we did or had…etc. , but it was odd to me, because that was not how I saw it, I had thought of that often since that night, I saw it more as Thank You God For Allowing Us To Be There, for letting us be there, I knew us being there when we needed to be, was an intercession from God, I knew this in my heart. I felt emotionally exhausted and drained, but in a way was glad to get those calls out of the way instead of having them looming over me, though I was still struggling with what/when to tell my daughter out of state. I went back into my daughter’s room and found her and her dad watching a movie; she was in pretty good spirits. Shared with her I had spoken to her aunt, she sent her hugs and kisses from her and the kids.. My daughter asked me if I had told her and what her uncle had said; I shared with her part of my conversation with her aunt, her uncle still didn’t know (due to him not being there) but that she would have him call me when he got home. Her dad left to call our pastor and to call his boss, my daughter asked me again for a mirror, still a little concerned with how she would feel when she looked into it, I asked her if she was sure. I figured she would say yes, which she did, but I wasn’t, we talked a little about the procedure, what they had done (cutting of the hair, the swelling) I guess I was trying to paint a picture for her so she wouldn’t be freaked when she saw herself. I went to pull the mirror out of my bag for her, Ok here we go, I thought as I handed it to her. She took it and placed it on her lap; I am guessing working up the nerve to look. I stayed right there, almost on top of her and watched her pretty close as the she began to raise the mirror to see, she just looked at herself for a while, then she sort of very gently touched around the tube, the hair, her swollen skin, then placed the mirror back on her lap, didn’t say a word (it was really eerie, but in a pensive kind of eerie), as I reached to take it and put it up, she said she wanted to hold on to it a little longer, so I left it on her lap. A little while later she asked about them shaving her hair at the forehead, will it grow back funny? Was she going to look funny? Was the swelling going to go down? She looked at herself several times, then, ahhhh lunch was brought in, she handed me the mirror and made a comment about her liquid diet…Not the best lunch that she would have preferred, but the good thing was that it took her mind off of the other. After all she is a teenage girl, her hair and looks were part of who she felt she was at the time, so I knew it was going to have some impact on her when she saw how she looked. So the distraction with the lunch was much appreciated for now, until the topic came up again. To be continued..... Quote Link to comment Share on other sites More sharing options...
suziandben Posted July 6, 2009 Report Share Posted July 6, 2009 Mauri, My nephew had brain surgery about 3 years ago at OHSU in Portland (OR). He hit his head on a cement floor and had such bad swelling and such that they had to open and then put a metal plate in his head. The surgeon surprised us all that he did not shave Kiel's head. He said well he's 16 his hair is probably pretty important to him. He indicated that he knew how to do a shaveless prep or something like. I know it's too late to be helpful at this point and perhaps the emergency room wasn't a place that they could the procedure without shaving. I just thought I'd mention it, not knowing the end of your story whether your daughter will have to have more procedures done. If so I would for sure inquire about whether they can avoid shaving her hair. As it appears that in some situations it is possible. Me personally, I'd for sure be the one who got shaved while a boy whose hair grows back in a matter of weeks or months vs. years didn't. Just the way my luck works... So I very much feel for your daughter in losing some hair. Thanks again for continuing to tell your story. Suzi Quote Link to comment Share on other sites More sharing options...
Scott & Char Posted July 6, 2009 Report Share Posted July 6, 2009 Mari you have me checking for your posts daily. You have me in awe of you and your family. Char Quote Link to comment Share on other sites More sharing options...
Kenny & Michelle Posted July 6, 2009 Report Share Posted July 6, 2009 Mari you have me checking for your posts daily. You have me in awe of you and your family. Char ME TOO! I used to look for any baby updates, now I look for Mari updates! What an amazing family! I know I've said it before but I could feel myself right there with you making those phone calls! Thank you so much for taking us on this journey with you and your family. Michelle Quote Link to comment Share on other sites More sharing options...
1st x grandma Posted July 7, 2009 Author Report Share Posted July 7, 2009 You folks are awesome… My heart aches daily due to the reason I am part of this group “those touched by adoption,” but know that my daughter and I are blessed a million x over with this forum family. Suzi, Thanks for info on your nephew..16 yeap, tough age, though I know teens are not the only ones whose looks are important (where would some of us be without make up, me for one).. I hope he is doing well.If you don't mind me asking. how long did his full recovery take? Let’s see if I can explain this to give you a glimps at what they did.. If you look at your face and directly above your nose to the hairline, put two fingers together, and place them horizontally, with the bottom of the lower finger at the beginning/end (however you look at it) of the hairline then going up to the second finger, that’s about where they drilled the hole, the instrument actually looked like a drill bit, and because of the way her hairline is they had to shave about an inch up from that center point and beginning @ hairline, then towards the right temple. They stitched it at the entry point and then again above the temple area. This allowed them to see the flow of the fluid and check it without having to touch her face and having to move hair out of the way each time. I had told her it reminded me of when she was five and decided to give herself a haircut (wanted bangs). Much love to you all Blessings, Mari Quote Link to comment Share on other sites More sharing options...
suziandben Posted July 7, 2009 Report Share Posted July 7, 2009 Hmmm I'll have to ask my brother about Kiel's recovery overall. I do know that just like your daughter pre-surgery was much worse than post surgery. He also broke his leg in that fall so the ER had treated him for that but entirely missed that he had a head injury. After surgery recovery was WAY better than the pre-surgery headache and vomitting. I'll ask my bro and get back to you. Quote Link to comment Share on other sites More sharing options...
hkingkong Posted July 7, 2009 Report Share Posted July 7, 2009 Yes Mauri. Your an inspiration! Quote Link to comment Share on other sites More sharing options...
1st x grandma Posted July 8, 2009 Author Report Share Posted July 8, 2009 Continuation….Part 25 Her dad walked back in and said he had left a message for our pastor, he also said he had called her brother and called one of her aunts, wanted his sister to call the rest of his siblings. We had already talked during the night of what information we were going to release and what we were not, and unless it was to family we were not going to discuss her pregnancy. At this point we weren’t even sure what the outcome of that major piece was going to be. We had also talked about limiting the people we told outside of the family that she was even in the hospital. I was really concerned with the area becoming a zoo, I know I probably have to explain this a little better, when people found out the year prior that her friend had cancer and was in the hospital, the place (hospital) was crazy, her mom had called me at work to tell me, she was pretty distraught and asked me if I could take my daughter to see her friend, of course I had told her, we would be there that afternoon, when we got there, I was surprised by what I saw, at first I thought it was great, there were so many people there, wow all this support, but found that many went the first few days only, and unfortunately the majority of them went out of curiosity not because they really cared.. It didn’t take long for them to disappear, and it left my daughter’s friend feeling bad. During the long months that laid ahead for her, besides her large loving family, only five of her friends were actually left that visited her consistently, my daughter being one of them. I didn’t want the same for her, I didn’t want people to come just out of curiosity or to gawk, (why my reference to a zoo) I wanted her to be safe from any more drama. I don’t know, maybe I was just trying to protect her and me, or maybe because both my daughter and I try to keep our private life private the majority of the time, whatever it was that drove me to make that decision, came from way deep within me and I thought about it long and hard before I had come to that decision. I had also asked my daughter if there were any friends she wanted to tell and she had said no. So for now, that’s what we needed to do, only tell the people outside the family that needed to know and really it was more of just following up with those that we had already talked to the day before (school, employers), anyone else we would decide one at a time. There were a few things I needed to go home and get for my daughter and I, though being torn at having to leave, it helped that she was doing ok in spirits. I made a list of things she wanted and needed, and left her with her dad. On the way home I called my son-in-law to find out what my daughter’s work schedule was like for the next several days, he advised me that she was on over nights (works retail, getting ready for black Friday & Christmas), I already knew that, but guess I didn’t stop to think it through first, she would have four days off at the end of the week. I made the quick decision to tell him, since he was at work, I asked him if he had a few moments, he said he did, and I advised him of what was going on with my daughter. I told him I was concern with telling my daughter, didn’t think I could get through it and I didn’t want to scare her with my bawling, said he understood, she would be devastated, I asked him if he wouldn’t mind telling her for me, but not to say anything to her yet, I would stay in touch with him, but asked him if at all possible he could check on her getting a little time off when we finally broke the news to her (they work for same company). I was concerned with her working over nights and driving once she heard what was going on with her little sister, I thought about not telling her and waiting until the end of the week when she was due to be off, but I also knew that she should and needed to know, I was really struggling with this, he told me that he would make sure she was given time once we told her, and if we needed anything else to call him. Talking to him was not any easier than it had been earlier that day with my sister-in-law; I was amazed he understood me at all through my crying, I kept apologizing for breaking down and he just kept telling me not to worry he understood. I would keep him posted. When I got home, I noticed that we had several messages on our phone, I played them as I went around and gathering the things that we needed , one was from my mom, she had called at 11 that morning (it was now noon), the others were from two friends of mine, (we usually called each other every couple of weeks to catch up on what was going on in our neck of the woods), I figured I would call my mom first, I would call my friends later. I dialed her number with trembling hands and saying a silent prayer for God to help me once more get through this call, when my mom answered, I told her I was returning her calls(worked really hard at staying calm and keeping my voice normal), she asked what we had been up to, told her not much, “well since I hadn’t heard from you in a few days, which is rare, I just wanted to make sure everything was ok” she said, I told her everything was fine, apologized for not calling, just that days and time had gotten away from me, but appreciated her checking up on me, “are you sure everything is ok” she insisted, “yes, mom, everything is fine, I will call you a little later,” I hated to brush her off, but I knew I would not be able to keep up appearances if I stayed on the phone with her much longer. After I got off the phone, I wondered how she was going to take the news, I worried that she would not handle it well, but I hoped that the immense strength that I knew she had would get us both through the conversation and the days ahead. My cell rang as I was gathering the items I needed, it was my sister-in-law, she said my brother had called home and he would be home by two, she would tell him about my daughter once he was home, her mom was going to stay with the little ones so she could go with my brother to the hospital, I asked her if she wouldn’t mind staying with my daughter while my brother and I went to see my mom, and she said she would be glad to. I knew my daughter would really enjoy having her aunt there with her. To be continued.... Quote Link to comment Share on other sites More sharing options...
suziandben Posted July 8, 2009 Report Share Posted July 8, 2009 Thanks Mari I was hoping the next installment would be online tonight. although we're reading about the past, your story telling is so vivid that it takes me there and I feel like I have to read each day's installment to make sure you (in the story) are still okay. Quote Link to comment Share on other sites More sharing options...
1st x grandma Posted July 11, 2009 Author Report Share Posted July 11, 2009 Thanks Mari I was hoping the next installment would be online tonight. although we're reading about the past, your story telling is so vivid that it takes me there and I feel like I have to read each day's installment to make sure you (in the story) are still okay. Thanks Suzi, Yeap, melt down on next posting.. it had to come at some point, right? Blessings, Mari Quote Link to comment Share on other sites More sharing options...
1st x grandma Posted July 11, 2009 Author Report Share Posted July 11, 2009 Continuation….Part 26 As I put the things I had gather in a bag, I also pulled out some items I had bought a couple of weeks before when I had done some Christmas shopping, for some reason these items at the time stood out, they were three bracelets, one was for my daughter, a stocking stuffer, and at the time I saw it, I thought about the detour her life had taken and the rough months that were ahead for her and us with her pregnancy, the road blocks and bumps she was encountering and those that would follow. The bracelet that I had bought for her was inscribed with the message “Life is a Journey, not a Destination” I thought it perfect for her and the journey she was on, the journey we were all on. Wasn’t this what life was all about, a journey that takes us through so many different roads. Roads that are filled with bumps, with detours, with celebrations, good times and bad, tears of happiness or sadness, heartaches and joys. Yes, it was perfect for her, a daily reminder that we are always on a journey in our life. Challenges and obstacles, that will test our strength, our courage and our faith or even humble us, will always be part of our life, what we do with our blessings and how we handle those detours, the challenges and adversity on this road of life, will determine who we are, these are experiences that eventually will define us. The other two were for no one in particular, I just decided to get them, maybe they would come in handy. Hummm, little did I know then, that they were meant to come in handy for me and get me through some tough times, one was a simple hook bracelet with a cross, the other was inscribed with the message “Know He listens without fail; God always answers knee-mail”, these three little bracelets held some powerful messages, they were to me another form of God’s intervention. Though my faith had never wavered, nor had I even thought to be angry at God for what was happening to my daughter, he knew I was going to need to hear and see his answers to my prayers, way before I did. I walked into her room to get her some warm socks; I felt such despair and sadness mixed in with pride, (strange combination I am sure) as I looked around at all her pictures on her walls, dresser,( every where she could find a spot really) pictures of her as a baby and toddler, kindergarten, her first holy communion, eight grade graduation, volleyball, being silly with friends at Halloween carnivals and at girl scout outings, pictures with many friends and family at different times throughout her life, and a picture of her unborn child’s sonogram next to the one of hers, the two pictures that took her from a child to the next level, but still a child no less, I looked at all her posters, animals, Disney, sports, posters with messages of perseverance, strength, and determination, and of being who you are, all who she was indeed. Then I thought about my little girl and all she had been going through. I sometimes wished it had been possible to put my girls in a bubble to protect them and keep them safe from life’s hardships, heartaches, tears or failures, but of course I couldn’t, and that really wouldn’t have guaranteed their happiness. The other side of that was allowing them to experience life, to give them the tools to be survivors, to make choices, and in making choices, knowing that they would sometimes make mistakes, but to learn from those mistakes, pull themselves up from their boot straps and not be afraid to continue living and to never give up. Both my girls have always been so full of life, but my baby, she has been the fire cracker, I thought about her ability to enter a room and turn it upside down and inside out with her passions, her zest for life, those traits that caused me to refer to her as my little Texas Tornado. Now she was not only struggling for her life, but also for her unborn child’s life. As I sat there on her bed and re-read the messages inscribed on those two bracelets, a tidal wave of emotions and pain so intense, all of a sudden consumed me, the immense fear that enveloped me along with the heightened level of emotional pain I felt, which I had not realized was possible to feel, came bursting out like a dam that had just broken under the pressures of torrential rains. There was no need for self-restraint or to practice my last several days’ self-imposed limits on my fears and tears. I was all alone, and in the privacy of my own home, the unexpected events of the last several days and their complexity had now made it impossible for me to try and hide my own intense feelings to myself. I just sat on her bed hugging her pillow and just let it all out, I sat crying, pouring out my soul, my heartache, my fears, my insecurities, and praying for God to replace them with courage, strength, and endurance, they didn’t have to be enormous amounts, just enough to get me by and to be able to help my daughter with whatever I needed to as her mother, asking him to help me keep my faith strong and to continue nourishing my heart and soul with his love, I cried until my head pounded. Though this unexpected emotional outburst was an exhausting process, it helped cleanse my soul and clear my head to continue on with whatever I would have to do next, I now had to pull myself up from my boot straps as I had always encouraged my girls to do and move forward, though hard that it was, I couldn’t let myself fall apart and be of no use to my daughter. Having this temporary collapse was somehow necessary though and it was better that I not try to contain it any longer and risk it consuming me even more and delaying what would have been inevitable and certainly impossible as well as the possibility of having it happen in front of my daughter. I had been gone too long from the hospital, I needed to wash up, and put myself back together. Told myself that going forward, I was ok and I was going to be strong, I guess maybe trying to convince myself. Before leaving the house I called my husband to find out how my daughter was doing and to check with her to make sure there was nothing else she needed. I had no plans of returning home until she was able to come home. I double checked that I had everything and headed back, the drive seemed to take so long, just like it had the morning before, I felt anxious, wanting to get there in a blink. My cell rang and I checked the caller ID, it was one of my friends again, I will call her later I told myself. Within a few moments another call, didn’t recognize the number, but I still had no plans of answering, at least for now, I would listen to the voice mail later. I knew I was avoiding the calls because I was afraid I wouldn’t be able to hold it together and would have to express the weight and what was in my heart, but I didn’t want to have to go into detail, to cause concern to anyone else, I just didn’t want to talk about it if at all possible, not because I wanted to pretend it was not happening, the seriousness of what was ahead, was a huge concern for me, but I just needed to focus on my daughter for now, I thought. I didn’t want to have to consider how others would react, or feel, I didn’t want to have to give them unpleasant news, but mostly I was too tired to try and keep up appearances and I was not sure that God had answered my prayers for courage and strength just yet, I knew he would, but when he thought it was the right time, not when I wanted it (like yesterday). To be continued.... Quote Link to comment Share on other sites More sharing options...
1st x grandma Posted July 15, 2009 Author Report Share Posted July 15, 2009 Continuation….Part 27 Finally made it back to my daughter’s room, she was doing well. Her OB had come by while I was gone; she had been there to check on one of her patients in labor. My daughter wasn’t sleeping as much as she had that morning, but she looked good. My husband told me he had talked to our pastor, he would be by that evening to see her and administer the Rite of Sick. I noticed he kept getting calls on his cell, her aunts and uncle had been calling my daughter said, and her brother and sister-in-law were coming by to see her in a little while. I told her I had talked to her grama, and messages I had on my phone. I needed to call her schools spiritual director back, would she be ok with visits if they asked to see her, I had asked my daughter before I returned any calls. She said she would be, but it depended on who it was. The nurse from maternity came up to check the baby’s heart beat, everything ok. But it did bring up a concern for me, since not everyone knew she was pregnant, I told my husband that we needed to make sure whenever any medical personnel came in to check on her, if there were visitors there; we would need to ask them to step out of the room, I was sure they would anyway or a nurse would ask them to, but we just needed to make sure if that didn’t happen we protected my daughter’s privacy. Her brother and sister-in-law came by, her aunt called me they were on their way, it was barely two thirty, but it had already been along day for me. I returned Sr. V’s call, then I told my daughter that Sr. V & Sr. M, would be by to see her on Sunday, and they had also put her name on the prayer board for daily prayers with the Sisters of the Holy Spirit, we certainly needed the prayers. Wasn’t ready to call my friends back, would do it later. I was getting good at procrastination, which is one of my pet peeves. When my brother and sister-in-law walked in, my daughter’s face lit up, her aunt had a superman (my daughter’s favorite super hero) Halloween basket filled with goodies for her. I didn’t know if she would remember or purposely forget that she couldn’t eat anything solid yet, so I waited to see what she would do with it, she did well, asked her aunt to put it on a table for her and as soon as they told her she could eat “real food” she would get into it. We all talked for a while, and I knew once my brother was there, the next thing would be to go to my mom’s, my brother went over to hug me and I felt myself start to tremble, he just held me tight and whispered in my ear that my daughter would be ok, I didn’t want to cry, thought I had gotten a lot of that out of the way earlier and even though I told myself I wouldn’t, the tears streamed down my face, and I noticed that his were also. He was my first family member outside of my daughter and husband that I had seen in several days, and it meant a lot to me to have him there, it sort of eased my fear a little, if that was even possible. “Whenever you’re ready to go just let me know” he said, I had to laugh and tell him, “well if you are waiting for me to be ready, that’s not going to happen,” he knew that he was going to have to gently escort me out of the room and out to his truck. Before leaving I gave my sister-in-law some basic information, no one could move her, if she needed adjusting the nurse had to be called, told her about the level and what it needed to be set at….even though my husband was staying, sometimes he’d get distracted and he’d been on the phone quite a bit. We were on our way to my mom’s, my brother shared that he hadn’t known what to expect when they got to the hospital, when he was told, he couldn’t believe it at first, (join the club, I thought) but that my daughter looked good, she was in good spirits and talkative (like herself). We just kept talking all the way to my moms and all the way I was really nervous and worried. When we drove up to her house, it took me a little while to get out of the truck, my brother kept telling me to take my time, we were in no hurry, and I almost felt like I was going to hyperventilate or be sick. Though I finally worked up the courage and got out, as we walked to the door, I had this huge urge to turn and leave, but my mom was opening the door, she of course said she didn’t expect us, and if it was just us two there? We started with a little small talk then we walked into her den and told her I needed to talk to her and asked her to sit down, she didn’t want to at first, and asked me if I was ok, told her I was, but she needed to sit, finally she did, my brother and I each sat with one of us on each side of her, to where she would be between us, (just in case).. I started by going back to our trip to my daughter’s wedding and if she remembered how sick my daughter had been (up to that point we had kept my daughter’s health issues from all), she said she did, so I told her as gently as I could that my daughter was pregnant, my mom’s face showed disappointment and concern and she said almost word for word of what my daughter had thought she would say, hay muchachita spill. Then I went on to tell her that wasn’t why we were there though, “mom, we had to take her to the hospital yesterday morning--, she got really sick--, mom,---she was admitted to the hospital, they first thought it was a problem with the pregnancy, but it isn’t, --- they found she has”****that was as far as I got, the pressure I felt on my chest, the lump in my throat, the knot in my stomach from the fear of voicing what came next was just too much for me, I looked at my brother and he jumped in and took over, “ they found she has a brain tumor,”..And then I lost it again, my mom sat there with a pain wrenched face, all the color drained her face and tears started streaming down her face, at first she didn’t say anything, and I knew it was due to the shock of what we had just revealed to her, then she found her voice and she wanted to know how she was, my brother had to respond for me and told her she was doing well, “she really looks good, and she is in good spirits.” Thank God he was there; she wanted to know how far along she was in her pregnancy and what affect it was going to have on the baby... I answered what I could, and told her what we had been told about the baby’s survival chance, which really was a more wait and see situation. She then told me that she knew something was wrong when I had talked to her earlier (well, I guess I didn’t do as good a job as I thought I did in sounding normal, wasn’t convincing enough when I called her), said that she and my sister had been sitting in her kitchen talking when I called, after we got off the phone, she voiced concern to my sister, that I had sounded strange, she felt like something was wrong, it didn’t sound like me, she just felt something. Mother’s intuition is all I can say.. I told her that I would call my sister later to tell her, and I gave my mom the hospital information. I didn’t know the phone number in the room, but I left her the hospitals number, and told her she could call me on my cell. We stayed with her a while, until we felt sure she would be ok, but even then I was not sure, but I wanted to also get back to my daughter, so my mom ran us off, telling us she would be fine, “give her a kiss and hug for me, tell her I love her and will be there tomorrow, if she wants or needs anything to call me.” That was one of the hardest conversations I had to have with my mom, but it was done and behind me, I felt bad leaving her with that heavy load, but she needed to know, I wished I could have been in both places at once to watch over them both. As we returned to the hospital my brother kept looking over at me, he finally asked me if I was really ok, I told him I was, I had had a total melt down earlier, and I knew things were tough, mostly the not knowing anything for sure, but I/we were going to be ok. As we entered the hospital elevator, I saw coming out of another one, a friend of my daughter’s since kinder with his parents, he had health concerns since he was little, hope his ok I thought. When we walked into my daughter’s room she had this huge gift bag, and my husband told me that her friend G and his parents had been there and had just left (same family I saw), they brought her a care package, and her friend had told them that he wanted to make sure she was ok, and that he wanted her to know that he cared, just as my daughter did for him and was always concerned about him and his health. Her friend had himself been in the hospital a few times, part of the gifts brought to my daughter, were pretty practical and probably due to their experience with a hospital. I thought it was super nice of them, but at the same time I was wondering how they knew my daughter was in the hospital. I asked my husband how they knew she was there, and he said he didn’t know; just that G’s mom had said they had heard, and he hadn’t asked for specifics, though I would have. Which now brought another concern, we first didn’t want to tell one of my nieces yet (my brother’s oldest daughter who is a year younger then my daughter), she gets pretty emotional, and they are close cousins. My daughter had introduced her friend to her cousin the prior year and they also became friends and talked somewhat often. I didn’t want my niece to hear it from their friend, so I asked my SIL if she could call her and let her know what was going on. I was thinking how in the world it had gotten out so quick, no one I had spoken to was even remotely associated with either of my daughter’s old schools. I put it off for now and updated my daughter on my conversation with her grama, and gave her the kiss and hug from her. My daughter asked if her grama was mad at her and I told her, that she was not happy she was pregnant, but the other concern over road that one. Though now, I would have certainly welcomed my mom being upset at just the pregnancy situation instead of the news I had to deliver, the reality and gravity of the present moment. To be continued...... Quote Link to comment Share on other sites More sharing options...
1st x grandma Posted July 17, 2009 Author Report Share Posted July 17, 2009 Continuation…Part 28 Not long after my brother and I had arrived back, our pastor arrived, we visited for a while, updated him on what we knew, then he lead us all in prayer and gave my daughter the anointing of the sick. He asked us to keep him up dated if anything changed and he would check back with us in a couple of days. After everyone left, my husband stepped out to get me something to eat, but I wasn’t really hungry, hadn’t been the last two days, I knew I needed to eat, but somehow I just couldn’t get anything else in my stomach, my nerves were occupying too much space right now. He was going to go home for the night, but he didn’t plan on leaving until my daughter fell asleep, there was no rush in him going home, I had let the dogs out earlier when I was home and they would be good for a few hours longer. . Nurses were still coming in every thirty minutes to check vitals, monitors etc…. the bag that was holding the fluid draining from her head was not quite to the half way mark, but it still contained a lot of fluid, couldn’t believe all that had been in her head. My daughter and I kind of started to relax a little bit; I noticed the weight on my shoulders in regards to telling my mom had lifted, even though there was still the majority of my family that needed to be told, telling my daughter out of state was the next tough one. How I wish I could have also been in a position to tell her in person, but I wasn’t, so I would have to rely on my son-in-law, I hoped he would be gentle with her when he told her, I still needed to decide when I was going to have him break the news. I felt like I was pulling myself in all directions and unable to go anywhere. How can I describe this feeling? Ahhh, when I was young there was a cartoon, and soon after the toys, the Gumby & Poky show, we had the toys and you could pull the heck out of them, stretch them in all directions and watch them slowly go back to shape, that’s exactly how I felt, my limbs, my heart, my head and my control (or lack of) over these last two situations where causing me to feel like I was being pulled. Now I was just waiting to be able to go back to one piece, I would have loved to say go back to normal or what it was before, but I still had enough commonsense working, to realize that we would never go back to how it was, before her pregnancy, before the illness. I had to just figure out how to keep going forward, and though I felt like I had currently lost control of my life, I needed to be optimistic of what laid ahead. I already knew that trying to suppress my feelings hadn’t been a practical strategy; and I had tried to stay quiet as long as I could, so as not to place undue stress on my family, it was also safer for my sanity in a way, but my unexpressed emotions engulfed me anyway and hit me like a darn freight train. I really had no choice but to be honest with myself and reevaluate my family’s priorities, it didn’t really matter how hard it was for me, I knew it was harder on my daughter and she was my priority. I did need to check on my mom in the morning, just to make sure she was still doing ok though, and I planned on calling my sister in the morning. My daughter, husband, nor I talked about what was happening, we had talked about it too much already, was my thinking, but if she brought it up, certainly I would want to know what was on her mind, even though I was really feeling helpless and somewhat lost as to what I should or could be doing while we waited for her surgery, but I knew we just needed to wait now and have positive thoughts that everything would go well. While they watched a movie, I had brought a book to read; well I tried reading, but kept losing focus, I would find myself just looking at her and wondering if her thoughts were also consumed with what was going on. She seemed fine, but was she really? Long after my daughter fell asleep her dad left, I knew it was hard for him to leave, but my daughter wanted him to go home and get some rest, no sense in both of us being there, I wasn’t going to go anywhere, they both knew that, (we kept throwing him out of the room anyway when the nurses came to check her). I watched the news and then, tried to get some sleep myself, but it was hard to mentally relax and quiet my head. Every time my daughter would moan or move, I jumped up, shortly after midnight, she woke with a headache and massive thirst, she would be due for the morphine in thirty minutes, the nurse brought her some fresh ice water, to help quench her thirst. I tried to keep her mind off her headache until it was time for the meds. We started talking about silly stuff, superman, movies, Halloween (about me not wanting another Halloween like this last one), we talked about a conversation she had had with her aunt earlier that day, when I had left to tell my mom. I thought it really strange, she told me she had asked her aunt if R (x boyfriend) knew she was in the hospital? Said her aunt asked her when was the last time she had talked to him , and she had mentioned that she had talked to him the night before, of course my SIL didn’t realize that there was no way that had happened (due to my daughter being out of it), told my daughter that she wasn’t “with him anymore”, my daughter said, that she scared her aunt, because she thought she was and tears started coming down her face when she was told that, so her aunt told her that maybe she was wrong, maybe she had misunderstood about them not being together, my daughter said her aunt kept apologizing for making her cry. They had also talked about my daughter having a little girl, my daughter didn’t remember she already knew what she was having, and asked her aunt if she was sure and how she knew, her aunt told her that she had called her the day she found out. My daughter was puzzled because she couldn’t remember, (to this day she doesn’t recall the day she found out she was having a daughter). So I asked my daughter if she knew she wasn’t with “him” anymore, and she said yea, she did, but didn’t know why she had thought earlier that she was, she remember her doctor appointments with her OB, and the sonograms, just not when they told her it was a girl. They came in with her meds and to take her vitals, while she/we waited for her to fall back to sleep we talked about a few things more, I just quizzed her on when was the last day she had gone to school? When had she talked to R last? What doctor had she been due to see that fateful Friday? She knew the answers, so why she had had that burp in memory, I didn’t know, but it did remind me that every time the neurologist, her surgeon, or nurses came in they would ask the questions, date, where, why. Finally she was back to sleep, I started my conversation with God, I had been having a lot of mental conversations with Him, it became to where I would talk to him often, was the first one and last one of the day and many times in between. Sunday, all souls day, I prayed and asked my daughter’s three grandpas, her grama, and her two uncles that were deceased to watch over my baby and continue to be her guardian angels. At four am when the nurse came in for the regular routine, she advised me that they were going to take her at five to get another CTS, lab would also be there to drawn blood, even though they had been poking her finger regularly throughout the day, (checking blood sugar), they had been taking three to four vials of blood daily. Shortly before five they came in to do the disconnecting and connecting to portables, off they went, I washed up and waited for them to come back, within fifteen minutes they returned and then lab was there. By six thirty, her dad had returned to the hospital, her doctor would be by soon. Coffee was all I needed, nice big cup of steaming hot coffee, not so much for the caffeine, but I did need that as well, but more for the warmth, I was freezing in there, so when he had called me that he was on his way, if we needed anything, that’s all I requested.. I had warm socks, long sleeve shirt, sweater and long pants, but still it was cold… Even though they had shown me how to work the thermostat, my daughter had been warm, so I had left it alone. Her headache was gone, I helped her brush her teeth, and she watched TV while we waited for her doctor. He came in right before seven, CTS still showed a lot of fluid, but it was draining, they would have an MRI done Monday morning, plan was still on target for Tuesday surgery if everything stayed as it was. He examined her and asked her how she felt, she said ok, but hungry, he wanted to know if she had held down the liquid diet well, the nurse also had told him about her headache, he had prescribed another medication so she could have it in between the morphine doses. “Ok, kiddo, what do you want for breakfast?” “I can eat now? I want tacos,” Yeah, solid foods, as soon as the doctor gave the ok and left, her dad went to get her the tacos.. I called my mom, it was seven thirty, to check on her, she said she was ok, asked her if she had gotten some sleep, she advised that she hadn’t gotten much (I had figured such), she just couldn’t stop thinking about what my daughter was going through, and wished it wasn’t happening to her, I agreed with her, but told her she was in good hands, and we would just have to keep praying that everything went well. She was concerned with us, how had we slept, had she been able to eat, what was her mood? I responded to all her questions, and told her that my daughter was looking forward to seeing her. I was planning on calling my sister as soon as I got off the phone with her. My mom advised that my sister was probably already on her way to mass, my nephew was scheduled to be a Eucharistic Minister at the eight am service, but she would be at my mom’s after mass to wait until my other nephew had to go to his ccd class, so my mom would go to the hospital after my sister left. I asked her to call me when my sister was at her house, and I would talk to her on the phone. We hung up and waited for my husband to get back with my daughter’s food, I was hoping she would be able to keep it down, would hate for her to have to go back to a liquid diet. To be continued.... Quote Link to comment Share on other sites More sharing options...
Bryan&Rebecca Posted July 17, 2009 Report Share Posted July 17, 2009 Mari, Your strength and faith are an inspiration to me. Thank you for sharing your story and having to relive the pain you went through to reach others. -Rebecca Quote Link to comment Share on other sites More sharing options...
dbugsma Posted July 17, 2009 Report Share Posted July 17, 2009 Mari, I continue to be amazed at your strength through out this hospital stay. I hope that you are saving these loving post & will print your story for keep.....you have such a way of telling everything that makes me feel like I am right there. Thank you for your honesty through these post. xoxo, Amy Quote Link to comment Share on other sites More sharing options...
1st x grandma Posted July 18, 2009 Author Report Share Posted July 18, 2009 Rebecca, I know you are going through your own personal health crisis right now, and though I am sure you have your times when you might be frightened, your strength shows in your postings. Continue to be strong in the face of adversity. Know that you are in my prayers daily for God to touch you with his healing powers. Amy, Yes, do have a hard copy, actually have been taking my story from my journal that I have had to redo, due to ink runs from many a tear. May you all have a blessed day.. Blessings, Mari Quote Link to comment Share on other sites More sharing options...
1st x grandma Posted July 18, 2009 Author Report Share Posted July 18, 2009 Continuation….Part 29 I had told my daughter that I planned on calling the two friends of mine that had called me, she was ok with it, one lives in Chicago the other here in town, I had no plans of disclosing the pregnancy, (still haven’t yet to this day, not that I don’t trust them, just haven’t found the right time, we always seem to be driving when we talk), but was going to tell them about the tumor. I had asked her again if there was anyone she wanted me to call, and she again said no. Her food arrived, we called the nurse in to position her so she could eat, shutting off/ clamping the fluid remover equipment (sorry don’t remember what it was called), was a delicate process that needed to be precise each time. She savored and ate her tacos like they were the best in the world, but I guess to her they were at the time, since she hadn’t had any solid food since that Wednesday and here it was Sunday morning. Once she was done eating and it looked like she would be ok, I left her dad in there with her and I stepped out and into the waiting room to eat a little myself. While there I returned both my friends calls and told them about my daughters brain tumor situation, they both felt the need to remind me to take care of myself because she was going to need me, (they know me too well, I would put myself aside for my children) I appreciated their concern and I know they were very concerned with my daughter’s situation as well as with my well being, I was able to get through those conversations, though I did shed tears, I had been able to stay in control. I couldn’t talk long to anyone, it would not be a good choice, didn’t trust myself to remain strong for long periods of time. We would talk again as I had the opportunity, both wanted me to keep them posted, and they would keep us in prayer. I went back into my daughter’s room and she was still doing well, nurse came up from maternity, everything still ok, a little later her OB came in; she also wanted to monitor the baby’s heartbeat and wanted to make sure a nurse was coming in to check on my daughter and the baby. My daughter was tired of laying on her back so we asked if she could be turned on her side, I learned how to help the nurse adjust her on the bed, but of course before she could be moved they had to clamp the equipment, we also had to cushion her arms, beside having an IV, she had a bag with potassium, a bag with something they called orange sunshine, (due to the severity of her dehydration), she was not only getting her prenatal vitamins, but the morphine and steroids injected through the IV, plus now they had included yet another medication for her discomfort. We also had to put powder on her back, since she had been laying in the same position, she was sweating (how, I don’t know, with the room feeling like an icebox to me) and she itched, her legs, had these massage boots that were put on her that Friday to keep her from developing blood clots, due to her not being able to or allowed to get up, they were attached to a pump that would alternate inflating them every few minutes, these also made her legs sweat, which made them itch, even though she had compression hose on underneath the boots. Friday and part of Saturday they had her on oxygen, but by today, she seem to be doing better and didn’t need it. She started to doze off, and I had missed a call from my mom while I was with the nurse helping my daughter, I knew she probably had called me because my sister was there. So I stepped out to call her, my sister if you recall, doesn’t handle stressful situations well, she literally gets all worked up, nervous, she is our families worrier, everything is magnified a thousand times over. So I figured I would have to be gentle with her in bring her into the loop. I called my mom answered and I asked for her, now I hadn’t spoken to my sister at length, since she had called me regarding “the rumor,” several weeks back, had talked to her briefly when I wanted to meet with her and my brother, but nothing more. I talked to her, I started off with a little small talk, (trying to get a feel for her mood) I then told her that I was calling her from the hospital, and proceeded to tell her why, I didn’t share a lot of information and I didn’t say anything about the pregnancy, just regarding the latest health issue. I asked her to please tell my nephew before he went to his ccd class, I figured if my daughter’s friend G knew, no telling who else did, and I didn’t want him to get caught off guard. He and my daughter were only three weeks apart in age, and they were inseparable growing up, until they went to different high schools. I got off the phone as quick as possible, I really worked hard not to express fear, or cry while on the phone with her, didn’t think she could handle it. Walked back into my daughter’s room and she was fast asleep, I tried to take a little nap on the recliner, since her dad was there, he would keep an eye on her. Thirty minutes was long enough for rest, when I checked my phone, I had several voice mails. I had messages that my daughter had been added to prayer list of the Presentation Sisters & Sisters of Divine Providence, ACTs community from a local mission. Wow, I was overwhelmed by all, but so grateful; we needed the prayers to get through all this. My brother called to see how we were doing, said they would be by later that afternoon. I still had one brother left to tell, but I decided that I would not, he had been having some health concerns since his return from dessert storm, and they seemed to be getting a little worse in recent years, so I decided that he didn’t need any more stress. Eventually the time would be right to let him know. Shortly after lunch time, her dad had left, he needed to do something. A volunteer had walked in with a beautiful bear, a gift from my friend in Chicago, while she was reading the get well card, her cell rang, I was sitting next to her, and hearing her end of the conversation grabbed my attention. I heard her say, “No, where did you hear that? I just have a blockage; I don’t have a tumor,” and I was stunned, then it was “why are you crying? I am ok, don’t scare me like that!” as soon as she got off the phone I asked her who it was, it was one of her friends, and I asked her about the blockage, and asked her if she knew what was wrong with her, she replied that she had a blockage, “yes, you do, but do you know or remember what that blockage is?”, she said she didn’t know and didn’t want to know, to her it was only a blockage. A few minutes later I cornered her nurse and asked her, if it was possible for her to not remember that she was told she had a tumor, she said she did, she walked into the room and started talking to her while she checked her, and asked her the routine questions, when she asked her if she knew why she was there, my daughter told her that she did, she was there because she had a blockage, the nurse asked her if she knew what kind of blockage she had and she said no, “do you want me to show you? I can print out some information for you that will help explain,” my daughter said “uhmmm, no that’s ok, I don’t want to know right now, my mom can tell me after my surgery, but not now, I don’t want to get scared.” I stood there trying to take in the conversations that had just taken place. The nurse left and a little later returned, she told me she had called my daughter’s doctor and he had said that sometimes patients will block out anything that is freighting or threatening. The refusal to acknowledge was a protection mechanize, though she did have actual memory laps from the hydrocephalus, the news about the tumor vs the blockage, he felt she was protecting herself, she was going with the first diagnosis prior to the MRI. He advise that for us not to bring up the tumor, until he had a chance to see her again.. More phone calls, they were coming in faster then I had seen. We talked about a few of these calls, when she mentioned some of the questions they were asking (of course understanding that, they were coming from kids themselves), she said it sort of laughing, but I could tell it was more of a nervous laugh, I asked her for her friend's number, and then asked her for her phone. I waited for her dad to return to the room, meanwhile I worked on getting her distracted from the conversations she had just had. My mom had called earlier, and told me she would be by with my sister and nephews once they picked him up from class, now I was wondering if she (my sister) had told my nephew, one of my daughter’s friends had told her that she had asked K and that he had told her he didn’t know what she was talking about, now I was worried about yet something else. As soon as her dad walked back in, I told him I was going to go get a drink and be back, I went and called my daughter’s friend, and asked her how she knew about my daughter. She advised me that in ccd class, the D R E (director of religious education who happened to know us, my daughter had been taking the class last year when she made her confirmation), had announced at the opening prayer that they needed to pray for my daughter because she was in the hospital with a brain tumor and mentioned the possibility of cancer, she was having emergency surgery… ******Ok most of the information provided was correct, don’t know where the cancer piece came in, unless they assumed it due to the tumor, BUT WHAT IN #@*^ Was this person thinking, making such an announcement to teens, how many kids had they frightened, how many parents were these kids going to go home and frighten . Here, I had been trying to cautiously tell my family, a group of grown adults, in a way that wouldn’t give them undue stress or frighten them, and someone just blurts out news like that. I felt for the kids, they shouldn’t have been told in that manner, though I appreciated them asking for prayers, I was upset, I felt that too much information was given out, and it was communicated too bluntly. I guess I was beyond just upset, I was furious, certainly not at the kids, they didn’t know better, but at the dang adults. Though I expected some talk, especially since one of her other friends had been there already the day before, I just didn’t expect the news to be delivered in such a way to a group of kids. To be continued...... Quote Link to comment Share on other sites More sharing options...
Scott & Char Posted July 19, 2009 Report Share Posted July 19, 2009 Wow how frightening and frustrating that must have been. The religious education teacher should have known better. You had enough to cope with than to have to deal with that. Char Quote Link to comment Share on other sites More sharing options...
1st x grandma Posted July 23, 2009 Author Report Share Posted July 23, 2009 Wow how frightening and frustrating that must have been. The religious education teacher should have known better. You had enough to cope with than to have to deal with that. Char Well, we would think so, wouldn't we... but it takes all kinds to make the world an interesting place. Blessings, Mari Quote Link to comment Share on other sites More sharing options...
1st x grandma Posted July 23, 2009 Author Report Share Posted July 23, 2009 Continuation….Part 30 I advised my daughter’s friend L, that she did have a tumor, we didn’t know what kind it was, advised her that my daughter wasn’t acknowledging it because it seemed that she was protecting herself by not remembering it, she was indeed going to have surgery, currently it was set for that Tuesday. Her friend asked if she and her mom could come by and see her, I told her to let me check with my daughter, and I would call her back. They were going to go grab a bite and run some errands, so I had time to make one more phone call before checking with my daughter and calling her back. I then called my mom, they were almost at the hospital, I asked her if my sister had told my nephew before he had gone to class, my mom advised that she had..Ok, good, I was so worried about him, I asked her to call me when they got there and I would meet them in the waiting room. When I went back to my daughter’s room, I advised her dad that we needed to make sure no one mentioned the tumor as discreetly I as could without my daughter knowing, I would tell him why later. I advised my daughter of her friend’s request and she said they could come by. A few moments’ later two religious sisters from my daughter’s school came by, one was the spiritual director, and the other was her English teacher, while my daughter and her English teacher talked, I spoke with Sr. V, advised her that my daughter was mentally blocking out the tumor, and advised her the surgery was still pending for that coming Tues., she would advise the school staff, so those that visited her would know. She wanted to know how the baby was doing, and I advised her that so far she was fine, shared with her the concerns they had for her survival, but they were monitoring heart rate daily, so far everything was good. They visited with us for a while, also gave us a blessing. My mom called me they were in the waiting room; my husband was in the room, so I excused myself and went to meet them. I updated my mom, sister, and nephews on my daughter’s condition, also advised them to please not mention the tumor and why. She currently had some visitors, so I would either come back out or have her dad come and get them, I did take my mom with me though into her room. Sr. V & Sr. M, left, so I sent my husband to let my sister and nephews know that two of them could come in, and he would stay with the other person. My sister came in and my husband stayed with my nephews in the waiting room. They visited with her for a while, then I left my sister with her, and my mom and I went out to the waiting room, where I sent my nephews in to see her, my husband walked them into the room and stayed there, I took the opportunity to find out what my nephew had said when my sister told him, my mom relayed that at first my sister didn’t want to tell either one, and my mom kept insisting that she tell them, especially the youngest, and reinforced that one of my daughter’s friends already knew, “what if someone tells him something” my mom said she told her, so my sister finally agreed to tell them, (thank goodness she had), my mom said my nephew (the one close to my daughter) was really upset and started to cry, he didn’t want to go to class, he wanted his mom to take him straight to the hospital, he wanted to see her. My mom said it took a while to convince him to go to class and my sister assured him they would go to the hospital as soon as he was out. My sister and one of my nephews came in, while we were talking, she advised that there was a couple in the room, it sounded like they were friends of my husbands, I took a minute to call my daughter’s friend, asked her also to call me when they arrived and I would meet them in the waiting room. I told my mom I would be back. I went to check to see who was in her room, they were from the church choir, I didn’t know them, but they introduced themselves to me. I spoke with the Mrs. and asked her very politely, how they knew my daughter was there, she advised that she had been at a commissioning mass the day before for the women’s acts group, when our pastor had come back from taking an emergency phone call, he was visibly upset and very distraught and kept apologizing for forgetting what he was doing, several times he stopped during the mass to collect himself, they knew something had shaken him, but they didn’t know what. After the mass, he asked for prayers for my daughter and our family. I should have expected him to feel deeply for my daughter, he has known her since she was in pre kinder; she had been an altar server for him since she was in third grade, and in seventh grade he had handpicked her to be one of two sacristans for him at the weekly school masses in her eighth grade year. My daughter was one of both our pastor and our deacon’s favorite altar server and sacristan, they always had her serve all special and holy day masses for them, my daughter has always be thought of highly by our pastor and deacon, I didn’t know though if her dad had told him she was pregnant, it would have to wait until everyone left, for me to ask him. My daughter wanted to see her grama again, so I went to tell my mom to go in. I stayed out and asked my sister how my nephew was, he and his brother had gone down the hall, my nephew was upset and he needed to pull himself together. My sister advised me that my nephew told her they had made an announcement in ccd., told her I knew, based on the calls that my daughter had received, it was barely one thirty, and when I checked my daughter’s phone that was in my pocket, she had numerous missed calls, but the callers were not leaving voice messages. When I saw my husband’s friends walk by to the elevator, my sister and I went back into my daughter’s room, and we sent my husband out to go check on the boys. A short time later they left, quiet time was from 2 to 4, and though they hadn’t been too strict with her, she had had a lot of visitors already, so I wanted her to get some rest before the next wave. While my daughter watched TV and dozed off now and them, I caught her dad up with the rest of the info about herself protecting mechanism in not acknowledging the tumor, advised him that we needed to make sure anyone who visited her did not bring it up, her doctor didn’t want us to mention it until he had a chance to see her again. We also were going to limit visitors to her room to five minutes, with the exception of family, or someone that she wanted to visit with a little longer with. From day one, we knew one of us had to be with her at all times, and the latest only made that more imperative. I had asked her dad what exactly he had told our pastor, and I was a little taken aback when he told me he had pretty much had shared everything… And he failed to tell him that we didn’t want specifics released. Ahhh, men, I tell you…. That afternoon my brother, SIL and niece came to see her, I had already advised them of the tumor talk ban. Her friend L came by later, I went out to meet her and her mom, and the poor girl was a mess, I talked to her for a while and she kept telling me she was scared for my daughter, I told her we all were, but we knew God was going to take care of her and not let anything happen that wasn’t supposed to. I also told her that she needed to be strong and not cry in front of her, as soon as she was able to get herself together; I walked her and her mom into the room. Calls were still coming into her phone, no voice mails, but she did check her caller ID, and she decided not to call any of them back, at least not yet. Another busy day, she was going to be tired tonight, I was sure, after everyone left, in between getting monitored, prodded and poked, meds. I was looking forward to some quiet time myself, she had been in a good mood, and her appetite was good. They had washed her up earlier that day and changed out her linen, but she said she wanted to take a shower, which of course she couldn’t; again we tried to relax as best we could, watch some TV, I tried to read. Thought about my daughter, had spoken to my son in law earlier, he told me he had secured for my daughter to be off as much time as she needed once we broke the news to her, I was so grateful to him for that, and it did relieve me of some worry. To be continued..... Quote Link to comment Share on other sites More sharing options...
1st x grandma Posted July 26, 2009 Author Report Share Posted July 26, 2009 Continuation…Part 31 Several of her dad’s church friends had also been calling, wanting to go by and see her, but my daughter really wasn’t up for it. Several of them had kids that had gone to school with her; she wasn’t particularly close to them and hadn’t spoken to most of them since a retreat in June, and the others since they had made their confirmation in May. I told him that he needed to advise them that we were limiting her visitors for now and to ONLY tell them that we would let them know how she was doing and when she was up for more visitors. Her dad left for the night, my daughter and I sat and talked for a while, I had her cell on a table and it kept vibrating, boy that phone was working overtime, each time I would tell her who was calling, several of them were from the same people that had been calling her since the night before, and one had been calling since Friday night, but she didn’t want to talk to any of them yet. She really seemed indifferent to the callers, I didn’t know what she was thinking, all I could do was guess, but now I asked her, and she said she just didn’t know what to say if they asked her questions, though in our current environment she couldn’t pretend nothing was wrong, but she didn’t want to have to answer any questions, maybe later. So we just let the calls go into voice mail, but again the callers, why they weren’t leaving messages was strange to me. We finally fell asleep, and her phone had calls until almost midnight. The recliner was becoming pretty comfortable, I guess I was adjusting myself to it, couldn’t get use to the darn cold room though..The nurse had brought me a couple of thermal blankets, which made the room more tolerable, my daughter, I had noticed, kept getting hot and cold, so I was either covering her or removing blankets. She seemed to be quite restless, not at all how she had been the previous two nights, I had asked her nurse about it, on one of their vital checks and she advised that they had changed the frequency of some of her meds, a couple of them were the ones that made her sleepy, but she would make a note on her chart for the doctor’s morning visit. It was hard to stay asleep long, I prayed for both my daughters, for my daughter’s friends, and for my family over all. I felt bad that they had to go on this journey with us, but there wasn’t a whole lot we could do about that. Nurse advised that they would be by to take her for an MRI at 4:30; lab would be by, same routine. Monday morning, couldn’t believe we had been here since Friday morning, I was anxious to get the surgery over with, but at the same time worried and really didn’t want that time to come. My husband arrived with her morning tacos; we waited for the doctor, I banked on us having a quiet day, since it was a school and work day for most. Doctor came by, he was meeting with his team later that morning, he was waiting for the lab results on the fluid taken Friday, and lab would be by to do some blood work to prepare for surgery. He spent time talking to us, mostly getting a feel for how my daughter felt, was doing, did she understand what was going on. He felt she was doing pretty well, considering everything she was experiencing. He would be back by later to talk about surgery and what they were going to do. Her ob also came by, to check on her and how she was holding up; also check the baby’s heartbeat. We pretty much spent the day, watching movies, her dad and I taking phone calls, my mom came by around mid morning with snacks galore for her/us. Baby was doing good, heart beat strong, though sometimes they had a hard time finding it. They had started coming in every hour since Sunday evening, which would have been great for her to get a little more sleep, but she had gone from cold to hot to cold most of the night. Lab came in to take blood, one test they did was to cut her on her forearm with a little blade and timed the bleeding to see how long she bleed for before it stopped, this apparently was important information for the surgery. Humm, didn’t know they did that. The Pastor I work for, came by to give her the anointing of the sick, and prayed with us to help us prepare both spiritually and mentally for her surgery. The nurses also came in to move her from one room to another, new room was directly in front of where she was, but on the opposite side of the nurses’ station, this was where the more critical patients are, they hadn’t had a room earlier, but they needed to get her in there prior to surgery. These rooms had mostly glass walls, which helped the nurses, keep an eye on patients it seemed. Monday afternoon was busy again, family coming by, a friend of ours who is a nurse in pediatric came by to see her, he asked me if our mutual friends, (family whose daughter was in the PICU oncology), knew we were there, he was also going to check on them and would let them know about my daughter, but I asked him not to, I did appreciate it, but felt like they had enough on their plate already. My daughter’s principle, counselor, Sr. V and several of her teachers came by, even teachers from her old schools. With it being Monday, many people were finding out at her schools, it got pretty hectic for a while. Several friends of hers started to come by; it was a revolving door for quite a while from 4 to 6.One of my daughter’s friends was crying before she even walked in the room, my daughter asked her why she was crying and she told her because she was scared for her, I tried to intervene by asking her questions about school, trying to get her attention so I could signal her not to cry, luckily the visiting hours stopped until 7, so her friends waited until they could see her a little longer, it gave me a chance to talk to them in the waiting room and update them with the tumor ban info. Her phone was also working overtime by now, as were ours. Shortly after I went back into my daughter’s room, her surgeon came in, “kiddo, how we doing, ready to get to feeling better, so we can get that tube out of your forehead?” She looked at him and smile and told him she was more than ready, though I had the feeling that it was easier said then what she was really feeling. He proceeded to tell us what was going to happen, or at least what he wanted to happen. He had not gotten the results of the fluid, but he wasn’t’ going to wait for it, he thought he knew what type of tumor it was, but preferred to see it before he could be sure. He drew a picture for us to show my daughter where the tumor was located, the plan was still to go in and try to remove it or at least the majority of it via scope procedure, and this would allow them to make a smaller incision. The other option that would be used only if they had to was to cut across the top of her head to be able to remove it. They would take all precautions necessary as to not affect the baby, but there were no guarantees. After surgery she would remain in NCCU for at least four to five days depending on her recovery, he felt she would be fine. Of course I felt he had to say that to keep us from additional worry and concern, though as positive as he was sounding, I knew I felt nervous and scared, I was sure my daughter and her dad did as well, her doctors were going to be traversing some tricky ground, even knowing this was his expertise as was his teams, and though I appreciated his extreme optimistic attitude, it did little to calm the fear of what we were facing and what my daughter would be going through. I knew she would be ok, she had to be, but it was still overwhelming and frightening, I had to battle my own insecurities and keep them at a safe distance as to be able to stay composed and not show the fear and worry in front of my daughter. They would take her down to prep her for surgery at five am, surgery would begin at seven, it would take anywhere from three to four and a half hours, shorter time if they could do it via scope, longer if they had to go the more complicated and delicate route. My daughter seemed to be doing ok with the news, she really wasn’t showing any signs of concern, other than she would squeeze my hand now and then when he spoke, and I just held hers a little tighter, I know it is probably strange, but it was almost as if that became our way of comforting each other, making sure we were both doing ok, and that we were aware of each others fear. Her doctor had continued to show his compassion, he talked to us for almost forty five minutes, never seemed rushed, made sure we understood the procedure, his reassurance about the doctors and nurses that were going to assist him, they where people he trusted and had worked with for years. He would see us in the morning, for us to get some rest, ahh, another easier said than done possibility, knew it would be a challenging request. Right after he left I called my family members, they were waiting to hear from us once the doctor had come by, my sister advised that my nephew wanted to miss school and be there, I told her that it was up to her, but it probably wasn’t a good idea, I found the same with my brother, my niece wanted to be there for her cousins surgery, again I told my brother it was up to him, but there really wasn’t anything they could do. I would let them know how she was doing. I also called my son in law; we decided to tell my daughter after her sister’s surgery, I would call him and let him know how everything had gone and how she was doing. My daughter’s friends and family that were waiting to see her started coming in again and it was busy until nine when visiting hours were over. I had a cell phone full of numbers of people that wanted us to call them to let them know how everything went and to keep them posted, I ended up asking a few of them if they could be the contact person for me and they could relay to the rest, I really didn’t have the energy or want to take time away from my daughter to be calling so many people. They did not hesitate, and were very supportive and I appreciated their willingness to help us out this way. To be continued.... Quote Link to comment Share on other sites More sharing options...
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