I was going to just update on Raven’s Journey Facebook page but then I thought that maybe I should make a blog entry considering just how long it’s been since I’ve made one. So many things have been going on in our lives and for the most part it’s been pretty normal. School for me, daycare for the kids, occasional colds/sickness but nothing really to write home about. That is until this morning… Let’s back track for a quick sec. Tuesday morning I was getting ready for work and Raven woke up just as I was finishing up so I went to get her out of bed and felt that she was really warm. Took her temp and she was just at the fever line so I called the clinic and asked to go up there instead of to the emergency room. They agreed and after a trip there complete with labs drawn and a dose of antibiotics, we were sent home. The nurse told me that if she spiked again, to just give her a dose of tylenol because we had a follow up set for the next day. Sure enough, she spiked again later that day so I gave her some meds and went about the day. She was feeling fine so we even managed to sneak in a trip to Target to get some grocery shopping done. All was well with the day aside from our minor setback. Then at about 3 am, she woke up crying. This is not unusual. Typically I just go in, put a pacifier in her mouth, she goes to bed and all is well, but when I went in I felt her forehead and she was burning up. I took her temp and it was 101.5 so I called the after hours number to find out what to do. The nurse said to just give her more tylenol and come in for the appointment like planned which is exactly what I did and just as I was going to bed, we got a call back from the nurse. The labs drawn from the previous day had come back positive for bacteria which meant immediate admission to the hospital. So for the last few days we’ve sat here waiting to go home. Mostly it’s been uneventful except yesterday she did have a small sore on her tongue. I decided to try to set it aside, but deep down inside I had a bad feeling about it. Still, positive thoughts flowing, I went about my day. Got to make up a day at school and it was incredible. Even had good news when I left which was that Raven was all set to go in the morning. Hospital home bound set up to teach us how to administer her IV meds at home. The plan was in motion, but again my gut told me we would not be going home. She woke up today tongue even more swollen than it had been and the sore was larger. Her top and bottom lip swollen with what appears to be two sores as well. She has not eaten and although she has requested milk a few times, she’s only managed to get a few sips down. She also has a small pimple on her tush and I’m hoping that that turns out to be nothing more than just that and not a repeat of one of our worst trips here yet. The nurse came in this morning and seems to agree with me that we are probably not going anywhere. Raven is miserable. Super, super miserable and that breaks my heart. I hate seeing her unhappy and worse is that I hate seeing her in pain. Anyone who knows Raven knows what a ray of light she is. Constantly joking around and smiling and making everyone’s day so to see her like this is maddening, upsetting… I’m trying my hardest to put a smile on my face for her, but it’s been such a long time since something has happened like this and maybe that’s why it’s so hard this time around. I just have to remind myself that we’re on the homeward stretch of treatment and that setbacks sometimes happen. I just hope this is a minor one and that those sores go away soon. For all your still reading, send out a prayer or positive thought today for my sweet baby girl.
Bone marrow biopsy update and latest info on how my girl is…
I’m not sure if I mentioned it or not, but a few weeks ago there was talk about Raven having a bone marrow biopsy to determine what could be making her platelets so low. If I didn’t mention it, I’m pretty sure it’s because the idea of her having a bone marrow biopsy secretly terrified me. I had had this long conversation with my favorite nurse at the clinic who just so happens to be Raven’s doctor’s “right hand man” (really woman), and she and I discussed all the potential reasons Raven’s platelet count continue to be so low. She had mentioned that there was a possibility that Raven had a platelet deficiency before she was diagnosed or that this could be just how her body reacts to the medicine and that not everybody can tolerate the medicines she’s on as well. She told me that there may be a possibility that the dosage might need to continue to be reduced until an appropriate amount could be determined. She also said that because the platelet count had been lower than expected so many times that there was a possibility they’d have to do a bone marrow biopsy with her second round of maintenance. Actually now that I re-hash, I recall writing something about this earlier, I’m just not sure how much detail I included.
Well when we had this discussion, I could tell she could read my mind about what was not being said. About the fact that the bone marrow biopsy would reveal if those cancerous cells were active. She cut Raven’s dosage at that visit and said she hoped that would be as far as they’d have to go. That as long as her platelets either remained the same or went up then she would not have to have the biopsy. She gave it two weeks and said the doctor would determine later if the procedure needed to happen. The following weeks went well and we continued with the lower dosage platelets holding around 50,000. I assumed everything was going just fine. Then the day came for Raven’s LP and the start of the second round of maintenance. Erik took her and I stayed home with Phoenix. He told me when they got home that the doctor had indeed decided to do the biopsy. I was scared but at the same time almost relieved to find out what could be the problem. I hoped for the best and decided I’d stay as positive as I could considering the results could go either way. Then I put it out of my mind.
Yesterday, we went back to clinic to have counts done. They pricked her finger and we played in the play room while we waited on results. I guess I kind of forgot that the bone marrow biopsy results could be available because it was a shock when the doctor started going over them with me. It came out of the blue really. We were talking about how Raven was doing and I was showing off her walking skills with him when all of a sudden he says “oh, did you know the bone marrow results came back negative?” I’m telling you at that moment he could have just shut up and walked out of the room and it would’ve been a great appointment. No active cancerous cells in her bone marrow! Yay!
It took a few seconds, but I started asking more questions about the low platelet situation. As it turns out, Raven has all of the “mother cells” for making platelets and although he was unsure of exactly what the levels of each platelet creating cell was, he was sure that she did not have a deficiency pre-cancer diagnosis. He just thinks that this is the way Raven’s body reacts to the medicine she’s on. Some people can handle a lot of the medicine, some people can’t. She just happens to be one of the ones that can’t. We are currently on a break from chemo because her counts are too low, but next week we’ll see where she’s at and go from there. More than likely she’ll be on an even lower dose. It’s a double edged sword in my mind because she’ll be getting a lot less of that harsh medicine which makes me happy but sometimes it makes me nervous because she’s not taking as much as protocol says. It’s just another of the situations in this journey I cannot control. Raven and I will roll with the punches and more than anything I will continue to be grateful that treatment is going well. We continue to be blessed through all of this. Raven is amazing.
Happy New Year
As this year closes, I wanted to take a moment to reflect on all that has happened. The year started with us in the hospital for one of the many infections Raven has had throughout this journey. It was a bummer to have to ring in the new year in a hospital room instead of in the comfort of our home or somewhere fun, especially after having spent Christmas and Thanksgiving there too. I remember thinking 2012 couldn’t possibly be as bad as 2011 and being so hopeful about the coming year. But then life happened and I was put on bed rest. I’ve heard so many jokes about how wonderful bed rest is (haha) but it was definitely hard on me. It’s not easy for me to rely on others for practically everything. It was emotionally draining at times to feel so terrible and not be able to do anything about it, but I tried to keep my head up as much as possible holding onto the fact that “this too shall pass.” I was excited, nervous and scared just trying to make it to full term so my baby boy could be born as healthy as possible.
The first few months of the year were hard. We spent most of January and all of February there and by the time we got home I just prayed for Raven to get into maintenance as soon as possible.
May came sooner than I thought and I was induced much to my delight. I was so excited to finally meet my little man. And he was perfect. As some of you know, when Raven was born she was preterm and she was immediately whisked away to the nursery to be monitored. It was heartbreaking not to be able to hold her after carrying her for 8 months, so when Phoenix was born and I got to hold him immediately, I was on cloud nine. Those first two days of togetherness were so precious for me and I’ll never forget them.
After those two days, things started getting crazy. Two babies and cancer! Yikes! How did we do it? Well we just hunkered down. No time for moping when you’re so busy and to tell you the truth, as time went on this year I found myself too caught up in life to be too upset about much of anything. I mean don’t get me wrong. I’ve cried, laughed, worried and felt crazy throughout the year, but when things get bad I remind myself that Raven is the strongest little girl I’ve ever met, that she’s happy, and that if she can do it, so can I.
I was thinking about it today and I thought I better not jinx myself with any of that “2013 can’t be as bad as 2012” stuff. Here’s what I know now. Life is tough sometimes. I may not always be able to afford things. I may not always be healthy. I may not always be content with where my life is at at the present moment, but I believe that the energy you put out into the world is powerful. More powerful than any circumstances. I’ve been saying it for a while now. “What you think you become.” I believe that quote is not just about you. I take it to mean that if I believe good things are going to happen, they will. If I believe I will succeed, eventually I will. It may not be the way I envisioned it, but I will be exactly where I need to be at the exact time I need to be there.
I believe Raven will kick cancer’s butt! She’s already doing such a good job. In October she started long term maintenance. I remember hearing about maintenance and how much easier it would be once we got there. It felt like we never would at times because we kept having setbacks, but she made it and treatment did get a little easier. (Not easy, just easier) She still takes so much chemo, but we’ve had far less hospital stays and my hope is that she will continue to do well without any major setbacks. I know little things are bound to happen but as long as she continues the way she is now I’ll be happy.
I guess overall, I just wanted to put some positive energy out into the world as yet another tough year comes to an end. I hope all of you are safe tonight and always!
Thank you again and again and again to all of you who continue to support our family. We appreciate each and every thing you do for us. We are so blessed even through hardship because we have a genuinely strong support system.
One year ago today…..
It’s amazing how much can happen in one year.
This time last year, I was praying for first time in years. I was sitting in an ambulance with Raven being transported from one hospital to another so that Raven could be admitted for testing to see if what the ER doctor had suspected was true. When he told me her blood tests pointed towards Leukemia, I had so many things run through my mind. No amount of words could describe what that’s like and no situation in life can prepare you to hear that something is wrong with your child. Funny how they say that one moment can change your life. It’s definitely true though. One moment, one sentence, one diagnosis can alter the path of your life. I know because it’s happened to me twice. Once when we found out Raven has Down syndrome and once the day we learned she had ALL.
Before that Sunday evening, all that was on my mind was how we would tell everyone that we were expecting another baby and how we would make it through the holidays at work. I had been consumed with baby thoughts that week and had been excited to start a new journey. We had miscarried earlier in the year so we had wanted to wait until we hit our second trimester to tell people the good news. It just so happened that the day I hit 13 weeks, was the day we found out Raven had cancer.
That first week in the hospital was the most emotional week of my life. I cried more that I ever have and was scared more than I had ever been and it didn’t stop there. There have been many breakdowns this year and many scary moments. Many times when the tears just came out of nowhere and I couldn’t help but cry. Many times when I wondered what would happen next or how we’d get through.
This year has been incredibly tough and surprisingly uplifting. We have been through so much between Raven’s diagnosis, to setbacks in treatment, months in the hospital, pregnancy scares, surgeries, and bed rest. It’s been the toughest year of our lives, but we have been surrounded by love and support. Whenever I’ve had a tough moment, I’ve been able to rely on so many of you to help me get through and I know Erik can say the same. It’s been amazing to me how many people have been there. Perfect strangers. Just amazing to me to see so many good people in this world.
How can I say all that I’ve wanted to say about this year? I really don’t know… What I do know is I’m grateful to be where we are a year later. Raven is doing better. She’s not out of the woods yet. We have a long, long way to go, but she’s doing better and that’s what counts. She’s happy and brings us more joy than I could ever express on a blog. Phoenix is here after a long and difficult pregnancy and I cannot believe he’s almost 7 months old. He’s gorgeous and happy and he completes our family perfectly.
To everyone who reads this and keeps up with how Raven is doing- thank you. Just knowing you are out there and that you care so much touches our hearts more than you know. Thank you for the kind words, thoughts and prayers.
MAINTENANCE!!!!!
It’s been a long time since I’ve blogged and I guess most of it’s been on purpose. I could say that I’ve been busy with two kids and work and although that would be true, it would not be the full reason for me staying away for so long. Over this past year, I’ve tried to focus on all of the good and hold on to the fact that although right now we are going through such a difficult time, we truly are blessed, but these last few weeks I’ve been struggling…. struggling mostly because I just feel tired. And I hate to even write that or say it out loud, but it’s true. I’m tired of all of this. I’m tired of keeping track of what doctors appointments we have, what chemo or antibiotics Raven needs and when, and worrying about what comes next. I’m tired of Raven not feeling good enough to walk and I’m tired of her feeling crappy from all this medicine. I’m tired of looking at her and feeling that my heart could explode with both pure joy and sorrow some days. And I’m tired of keeping it all in. I wake up most days determined to put my best foot forward and to keep a smile on my face- to think positively because I truly believe that thoughts are powerful and “what you think you become” and for the most part I think I do a great job, but there are days when it’s tough, when I just want to sit on the couch and not do anything, or not smile or not talk to anyone… and I don’t say this all to just complain. I’m letting it out now because for the last few days I’ve been extra worried.
On Monday, Raven was scheduled for the second time (or third- I’ve kinda lost track…) to start maintenance. I came in to the clinic just expecting for her to have a quick appointment- counts only, but was informed that she was indeed scheduled for an LP. At first I was kind of annoyed because I had fed her when I shouldn’t have, but also excited so we could just “get this show on the road.” Then the nurse came in to give me the bad news. Her platelets were not high enough for the procedure. I was immediately deflated, but things got worse when the doctor came in to talk to me. He mentioned that she was originally due to start maintenance on September 17th and that at that point she was three weeks delayed. He said that although it was pretty typical for her and other children with Downs to be delayed, that he would be concerned if her counts were not where they should be by Thursday. He told me that if at that point she hadn’t come up to where she needed to be, that he would do a bone marrow biopsy to see if there was something going on and although he didn’t come out and say it, I knew what he meant was that if her counts weren’t where they should be that he would be concerned that cancer cells had come back. Words cannot tell you the feelings I had leaving the office that day… I guess if I had to try to explain it I would say that it felt like a vacuum had sucked all of the air out of the room. I felt numb. Panicked. Like I was choking. And all the while I tried to just keep it together. I relayed the information as flatly as I could because I knew if I let any emotions out it could lead to crying and I hate to cry. I had a moment the next morning while talking to a co-worker about everything and had to excuse myself to pull it together and I did, but over the past few days I’ve had more moments where I start to feel the tears just moments from surfacing.
This isn’t the first time Raven’s had a significant delay in starting the next round of treatment. And it isn’t even the longest she’s gone in between rounds, but this time took me back to when we first started treatment and I had all that nervous, scared energy. It sucks to worry about your kids (or loved ones) when they’re sick. Especially when you feel so out of control. But that’s where I’ve been these last few days.
Yesterday when the nurse came into the room to take Raven’s counts, I almost broke down. I told her what I had been feeling and she reassured me that things were okay. She said all of her other counts were good- even if her platelets weren’t up and she did have to have the bone marrow biopsy she felt like things would be okay. I told her my nerves wouldn’t be settled until I heard her platelets were okay. I tried to distract myself for the ten minutes it took to get results, but when she popped her head in I almost jumped out of my seat. She just had a huge smile on her face and said “good news!” and I screamed “woohoo!” and clapped. It made the whole office laugh and say yay too and I was happy to hear them happy for the results too. The next order of business was to schedule today’s LP.
Raven has had a big impact on the doctors and nurses there. You can see it when she comes in. They all stop to come by and chat with her, even the nurses who are with other patients and the social workers in the clinic come by to chat when they can too. It’s nice to see they care so much and it makes us feel so taken care of. It’s great to know they celebrate when we do and are there to reassure us when we need it.
I was reminded again this morning how much I have to be grateful for even though I’ve had a rough couple of days. There’s a little girl who was in the hospital for pretty much the entire time Raven was those four months this past year. She’s been there actually much more than we have and from what I’ve heard here and there, she has a rare form of cancer that may not be curable. Her mother is younger than I am and she has three kids. This morning just as I was getting settled in to our room in outpatient pediatrics, she passed by our door. She always stops to say hi when she sees me and I enjoy saying hi to her daughter who is just a little older than Raven. She said it was great to see me and then out of nowhere she dropped a bomb on me. She said that the doctors had told her that her little girl only had 1-2 weeks left to live. She said they told her that 8 weeks ago and that she was happy to tell me that her daughter was thriving. I honestly couldn’t even recognize her and it took me back. She was so puffy from the steroids and although I smiled as big as I could for her, it broke my heart and took everything I had to hold it together in front of her. What I wanted to do was jump out of my seat and hug her and her mother. I wanted to give her a kiss and reassure her like I had been reassured this week that it would all be okay. I wished it would all just go away. That she would get better immediately. And it made me think. Yes, I’ve had a rough week. Maybe even a rough couple of weeks or months, but it could always be worse. I’m always kind of uncomfortable when people say that I’m strong or that my feelings are normal. I don’t want to put myself out there as some incredibly strong person when I feel like all I’m doing is taking it one day at a time, sometimes just trying to hold it together even. I don’t like to put my feelings out there too much because I don’t want to be whiny. This is a crappy situation, but it’s just something we have to deal with. Raven will get better. There’s no question in my mind. It’s just a matter of time. Who knows what will happen to that little girl I’ve seen so many times. I pray that she will get better too. That she can one day say she proved all those silly doctors wrong so many years ago. I am inspired by her mother’s strength. I am inspired by her too- for fighting so hard to stay here. For being so brave.
Tomorrow morning we will walk, probably without Raven, at the Step Up for Down Syndrome walk. I’m sure I’ll be filled with so many emotions but I will try to remember my little friend and her mother and I will think of my sweet girl who’s stronger than I could have ever imagined. I will hold my head up and be positive for us and for our friends. I will be so grateful for the love and support that constantly surrounds our family and for the community coming together to help out an organization that’s meant so much to us these last three years.
Thank you for letting me vent and for holding me up when I’ve needed it. Your comments and “likes” have lifted my spirits so many times over the last year and it means more than I can say to know we have all of you to be there for us.
Day 29
Yesterday Raven started her second part of delayed intensification which was supposed to happen 29 days after she started this round. Technically day 29 was supposed to be July 21st, but because of the infection on her tush, things got pushed back. That’s just how things have gone for us during this whole process, so I wasn’t surprised she was delayed. It’s been a little tougher for me this time though because I’ve been so anxious for this round to just end. I have to admit that yesterday I was a bit distracted in the morning just thinking about being with Raven and what it meant for her to get chemo again and finish this round.
I had to work in the morning so Erik took her to the hospital to get her LP and treatment. She went in at 1:30 for the LP and Erik says she did great. He says she woke up saying hi to everyone she saw. She has become so social lately saying hi to everyone she sees everywhere she goes and it’s really cute. I have a feeling she’s going to be one popular girl when she gets to school.
I got to the hospital shortly after she got out from recovery and she seemed happy to see me. Erik was feeding her chocolate chip cookies and I could tell she was really into them. He left and I took over and then we just hung out and waited and waited and waited for chemo. It always takes a while for orders to come through and the pharmacy to make the chemo so I took the opportunity to lay in bed with Raven and sing and sign. I taught her this new thing where I say something like “Raven, are you a funny girl?” and she holds her hand to her nose and laughs. It’s hysterical and melts my heart. She even showed her nurses and they all got a kick out of it.
At about 5pm, she got two doses of chemo. After they were done, we had to wait some more. She had to have four hours of hydration afterward. Outpatient pediatrics is only open until 7pm, so we had to be transferred to a room upstairs in our home away from home. When we got to the room, Raven started getting really cranky. I could tell she just wanted to get off that bed and play. It’s so hard for her now because when she feels good she’s so hyper and she just wants to run around and play and she doesn’t understand that she just can’t. That part is frustrating and heart breaking. It just sucks to see her upset and the fact that I can’t really communicate with her the way I’d like is tough. That’s honestly why I’m looking forward to this round ending. I keep getting told things will be different once we get to long term maintenance. My hope is that once she’s there the hospital will become just a place where we go for check ups and not stays.
All we have to do is make it through the next 27 days. Today, tomorrow and Thursday we have to take her back to the hospital for more chemo then she gets a three day break and will have to come back four more days in a row for more chemo. She will also be taking chemo at home for the next 17 days and I think she has more chemo scheduled after that on her road map. To be honest I’m not quite sure and I’m just taking this last round one day at a time. Anything can happen so I’m just taking it one appointment at a time.
For now, Raven seems to be doing well. She was slightly cranky this morning and didn’t want to eat anything but that doesn’t surprise me. We all have the day off together which is nice so we’re going to hang out and enjoy each other’s company.
Surgery for my girl and a little venting…
Raven just got taken back into surgery. She is going to have the infection on her tush lanced. It went from bad to better to way worse, and now she has three spots that need to be drained. This last week has been really tough. She’s been in so much pain and it’s been so hard on us to watch her scream and cry and be so uncomfortable. The doctor put her on morphine every two hours and it really helped, but she was still in intense pain every time we had to change her diaper or move her. The last couple of days she hasn’t had to have the morphine round the clock, but she’s had to have it three or four times a day as needed which has been better.
Yesterday was a bit frustrating for us. Erik stayed the night with her Sunday night and there was a new nurse with Raven that night. Erik woke up around 12:30 to change her diaper and then went to sleep, but when he woke up in the morning, Raven was covered in poop (diarrhea) and pee. He said it looked like she had been laying in it a while and that was just unacceptable. She was getting blood and platelets all night so the nurse was in and out of the room plenty of times. Enough to definitely check to see if she needed a diaper change or at least smell that she had pooped and at least wake Erik up. Most of the nurses will just change her in the middle of the night if we’re asleep and I can understand not wanting to change someone else’s kid’s diaper, but we were just mad because she said nothing and did nothing. It wouldn’t have even been a big deal except for the fact that she has that infection on her butt and since she’s been neutropenic and susceptible to even more infection we don’t want anything to make it worse. Needless to say, we were pretty upset about it.
The day didn’t get much better when we got another new nurse. We actually had her yesterday and the day before. The thing I was most upset about with her was the fact that she knew Raven was in so much pain yet seemed to have so little compassion for her. She put on the “I care” face, but kept doing things that hurt her like touching the infection site and moving her around more than necessary to do vitals. I’m not a violent person ever but I’m telling you what, more than once yesterday I had visions of smacking her. I finally asked her not to touch her any more and then called in the charge nurse to complain. You should have seen her face when I asked for the charge nurse. She kept asking me why I needed the charge nurse and even though I wanted to give her a piece of my mind, I just calmly said I had a few issues and returned to facebook. I was trying so hard to be polite to her but I finally couldn’t take it and just stopped talking to her.
Yesterday was probably one of my most frustrated days here just because I felt like the new nurses were disregarding Raven’s infection and how she felt. I try really hard to be very nice to everyone, but when you mess with my family or kids I get pissed. I seriously hope we don’t have the same nurse from yesterday when I go upstairs because I will ask for another person.
Back to the surgery though… The surgeon is going to make some incisions to drain any puss that may be under the skin and then will put a drain in if needed. Hopefully this will relieve her pain and help her heal much quicker. I also learned today that an open wound would be better than keeping it closed because no new infection can enter once it’s open. When it’s closed it’s a breeding ground for the bacteria so it’s good to have it opened. I’m hoping my baby girl can get some much needed relief soon and that she can be healed very soon.
Today she was supposed to start day 29 of her delayed intensification, but because of everything going on, she will not start until her counts recover and we are out of this a little bit. I’m guessing it will be probably close to two weeks before she’ll start up again. Hopefully nothing eventful happens once that starts because once she starts day 29 there’s less than a month before she goes into long term maintenance. I asked the nurse about when she’ll be done with treatment and she said March 2014. I was curious if it could go longer than that because she’s had so many set backs, but she told me that the date is set by the when she entered into interim maintenance. Apparently, treatment goes two years from that date so no matter what Raven will stop treatment in March 2014. I’m glad we have an end date. I know it’s far away, but just knowing there’s a point where we won’t have to do this any more makes it better. I’m still taking it one day at a time, but whenever things get tough like they were yesterday I think March 2014 and even though it’s far away I realize it will be here before I know it and then one day all of this will be just a bad memory.
Hospital stay #13
Yesterday morning, I woke up to a pretty miserable little girl. She’s been cranky for the last week or so because of the steroids and at first, I thought she was still cranky just from coming off of them. Then I noticed the thermometer on the ottoman and realized that Erik must have taken her temperature before he left for work. I felt her forehead and she was hot so I took her temperature. She was 99.3. I got a little panicked, so I took it again and it was just above that. I decided to wait half an hour and see what happened. I took it again and she was at 100. I started getting a sinking feeling in my stomach and just had a feeling we’d be in the ER by the end of the day, but I still hoped for the best. I called her doctor’s office and talked to one of the nurses. She told me to just keep and eye out for her temperature going up and that if it did we’d need to come in immediately. While I was on the phone with her, Raven fell asleep so I put her down for a nap and started cleaning the house. About an hour and a half later, she woke up and when I went to change her diaper and clothes, I noticed she had what looked like a terrible bug bite on her little tush and she was shaking in pain. I immediately started getting worried and called my mom to pick us up and take us to the ER.
We got here in the afternoon and they started her up on antibiotics. The ER doctor came in and told me it was cellulitis and that she’d need to be admitted. Her heart was racing because her pain kept getting worse and her temperature was getting higher, so I called the nurse in and she gave her tylenol and morphine for the pain. After about four hours here, her temperature started going back to normal which was good. Erik came to see us after work and the four of us hung out together in the ER while we waited for a room to open upstairs. Finally, around 11, we got a room.
Raven is now on two different antibiotics and she is super miserable. She’s literally shaking in pain if she’s moved too much and the only way she’s comfortable is laying on her belly or her side. She’s pretty much been sleeping since 8pm. She’s waking up every once in a while, but for the most part just sleeping. She’s also signed a few times that she wants to eat, but when I bring her food she starts screaming. I feel awful because there’s nothing much I can do to help her out and it sucks to see her so miserable. I spoke with the nurse and her oncologist and they say she will be here for a little while. Her ANC is at zero which means she’s super neutropenic and susceptible to any kind of germ. The doctor is also giving her neupogen to stimulate her white blood cell count so she can fight this infection. The hopes are that it will make her heal much faster than if she didn’t get it. That’s what I’m hoping anyway. My fingers are crossed that we won’t be here too long.
Looks like we’re not going home today…..
As you all know, Raven started a new round of treatment on Friday. My brother David, Phoenix, and I were all with her as she got an LP and had three doses of chemo. We get what are called “roadmaps” for each round of treatment which show us detailed information about what chemo and procedures she will be getting and on what day. Each time she has an LP with chemo, her roadmap calls for her to have leucovorin which is a “rescue” medication at 48 and 60 hours after the procedure. Yesterday at 1pm was the 48 hour mark and we missed her dose of leucovorin. We also missed her 60 dose. Both the doctor on call and I were not thinking clearly I guess and miscalculated so now we have to give her a very late set of rescue doses. Today is also day 4 of this round of treatment which means she needs to have another dose of chemo which runs through IV for a few hours.
In between all of this, Raven has been getting steroids which are five times the strength as the first time she was on them. I was unaware of the increase in dosage at first which I is probably the reason why I didn’t think much of it before she started back on them this round. I just kept thinking that the dose would be the same and don’t even get me started on what it took to get her the new prescription… When she had to be on them the first time, it took her about two weeks before she started to get cranky so I thought since she only had to be on them for a week it wouldn’t be so bad. I thought I was prepared. I was wrong… very wrong… These steroids are kicking her butt. She woke up this morning and the first thing out of her mouth was “NO!” and then she started crying and it didn’t stop there. I’m not exaggerating when I say she literally cried for two hours. The only break she took was in between bites of oatmeal. I sat her down next to me and she managed to quiet down for a minute or two at a time but then she’d either start whining or screaming and flailing around. Finally, I managed to get her to fall asleep, but when I tried to put her down in the crib, she flipped out and woke up. Thank God we have such great nurses because they helped me with Phoenix and even let me get breakfast and a shower. Raven played with them for a few minutes at a time but even cried with them.
With all that’s going on right now, I really don’t expect us to be leaving the hospital today. Who knows if she will be able to leave tomorrow. I guess it all depends on how she does with the Peg (chemo) today. Hopefully all goes well and she doesn’t spike a fever with the chemo today. I’ve got my fingers and toes crossed that things go well. We only have to make it to Friday before she gets a week off so we just have to hang in there.
An update… finally…
It’s been over a month and a half since I’ve “formally” updated everyone on how things are going with Raven and what happens next. As you all know, we had our baby boy Phoenix on May 7th. It’s been just over six weeks since then, and a lot has gone on in that time. Raven has been admitted to the hospital three times, had many trips to the clinic for checkups, and has finally completed interim maintenance which means she only has one more round of treatment before she goes into long term maintenance. I know it must be hard for you all to keep track of what round of treatment she’s on because it’s hard for us sometimes so I’ll break it down.
The next round of treatment is called “delayed intensification” and apparently it’s going to suck. Raven will be on eight different chemo drugs including two that she’s never been on and she will be taking steroids as well. Her schedule for treatment really is intense, which is probably why this round of treatment has the name it does. Aside from the fact that she’s going to have so much chemo, the steroids she’s going to have to take are just horrible. They make her super cranky and bloated and just overall not herself. The only good thing about the steroids in this round is that she’s only on them for the first week, then she gets a one week break, and then she’s on them again for a week and that’s it which is so much better than the first time she was on them for a whopping 28 days.
This round of treatment is scheduled to go on for 57 days, but with the way things have always gone with Raven’s treatment, I’m expecting it to be longer. Hopefully it won’t be too much longer though, because after this round of treatment, she goes into long term maintenance. I’m so looking forward to long term maintenance, because that is the final round of her treatment and it will be much less intense than anything she’s gone through so far. Even though it’s the longest round of treatment, when she gets there it means she’s on her way to long term healing and eventually no treatment once she’s been in remission long enough. She will start to get her full strength back and her hair will grow in too. I can’t lie- I’m looking forward to that part.
Tomorrow is going to be intense for me. I’ll be alone with the two of them as Raven is admitted to the hospital for treatment. I’ve been alone with them before in the hospital, but never when Raven’s had to have a procedure. She’s going to have an LP tomorrow afternoon so we’ll see how that goes. Hopefully everything goes smoothly. I’m sure I’ll update again tomorrow. Please pray that everything goes well tomorrow and that this round of treatment is as close to the scheduled 57 days as possible. No fevers and also pray that Raven’s counts don’t drop so low that it prolongs things. The sooner we’re out of this round, the sooner she’s on her way to being 100% cancer free!
Raven's Journey 