The lights at temple square, they are much prettier in person.
She got some new hats and a new bear from Montana friends, do you think she likes it?
Making gingerbread houses
Talk about concentrating...so serious!
They had just played in the snow and this reminded me of a Campbell's soup commercial, MMM, MMM GOOD. Grilled cheese and tomato soup...
Christmas Eve, the annual tradition of new pajamas, gotta model them.
I don't know what was so funny, but don't you love it when your kids laugh!
Hmmmm, Daddy is a little too excited about this tradition...every year we put the kids in bed, and on an unexpected night we wake the kids up and take them to look at Christmas lights around town and sing Christmas songs in the van with some hot chocolate. It was so much fun this year, they really loved it!
We got our white Christmas, that's for sure!
Christmas dinner with the cousins
Does anyone else's house look like this on Christmas morning? I just want to point out that about 90% of the gifts the kids got this year were donated, many of the anonomously. Amazing. I have no words.
Taylor's Christmas Eve PJ modeling, it's out of order :)
Sledding fun, Taylor, Brinley, and cousin Ashley
All by herself, she was psycho about it! David had to walk up the hill like 20 times in a row so she could keep going down by herself! So fun.
Our first stuck in the snow incident, Alissa was the lucky driver.
Taylor's stitches, this one's for you Dad. Matt's right, I didn't get the gaping open wound, but at least I remembered to take a picture at all, I'm learning! It looks much better stitched up, I'll tell you that much.
Back from the ER
The lights at temple square, they are much prettier in person.
Now that things are calmed down, I can finally write about the Christmas party we went to before Christmas. There is a charity associated with the BYU basketball team that has put on a party for many years now for families dealing with cancer. It's a two night thing, the first night the parents come alone and they serve a dinner and give you a number. When your number is called, you go to the back into a room full of toys and pick out Santa toys for all of your kids. I have so much to say about this party, I will try really hard to express it without having to write a book. I'll start with the people we met. We walked in and I immediately realized that EVERY person in that room had a child that had gone through some ordeal with cancer. I have never felt so understood without even opening my mouth to speak. The man in line next to us for food introduced himself, and told us about his daughter, who was diagnosed at about Brinley's age with ALL, then had a relapse, and just finished her second treatment of chemo. She is doing well, and he has been coming for years. Then we sat down at a table with a couple extra seats. We happened to sit next to a family who have been through some awful times. They were amazing to talk to, they lost a son to AML (he relapsed after treatment, and passed away soon after). Four short months after his death, a second son was diagnosed with ALL. If you remember, ALL has a much higher cure rate than AML, so they got a very good prognosis, and began treatment. However, his body could not tolerate the chemo (I hope I am getting all of this right), and he also passed away soon after. Talk about being humbled. First of all, how do you even go on after losing two of your children! This was their first christmas without both of them, and you could see the pain in their eyes. And there they were, listening to our story of our daughter who is fighting cancer, and still alive. They were at a party full of success stories, and people undergoing treatment, and they have lost both of their sons.
They other couple at our table took their 5 year old in for a bloody nose in March that wouldn't stop, and soon after had a diagnosis of leukemia (AML). As they were preparing to start the chemo, he went into a coma, his body shut down, and the very next day he died. I gained so much respect for both of these families that we shared a table with. They were amazing people who had suffered so much, beyond my comprehension. Needless to say, our ride home was pretty quiet.
When they brought us back to pick out the toys, it took everything I had to not totally break down bawling. Seeing all of the people volunteering, from the board members, to the guy driving people in the cold all night to and from their cars in golf carts. All of them were there to help make our lives a little easier. It was so touching and made our Christmas so much better than it would have been.
The second night was the party for the family. Santa was there, and gave all the kids so much attention, he was a great Santa. They had dinner and gave the kids each a toy. Everyone had so much fun, the kids loved it. Taylor even said she almost started crying at school thinking about how nice it is for them to give out toys and have this party for us. My kids felt special, and after all they have gone through, they needed a little "feeling special." It's amazing to see the people out there willing to make sacrifices for the good of other people. There are so many good people out to make a difference.
Things are going really good for the moment, our Christmas was GREAT! Brinley's fever never passed 99.5, so no ER for Christmas day. The kids had a great day and we all went to eat at my sister-in-law Stacy's parents house. It was a great meal and we went to bed with smiles on our faces. We missed our families, but were very grateful to have an uneventful Christmas at home.
I also have to say that we had so many people do kind things for us this Christmas. From dropping off secret gifts at our door, to sending us money, we had an outpouring of kindness this year and we are so, so grateful. It made for a wonderful Christmas, not so much because of the actual gifts, but because of the chance to see how much support we have in our family, friends, and community. I've said this before, but I don't know what we would do without it. I truly don't. Where would we be without each other? I have made a committment in my life to be more like all of those people so quick to be there for us when we have been so desperate for help. I know I can be better, and I have been shown how it is done.
We have plenty of pictures to post over the last few weeks, but have had too much going on to actually sit down and post them. I'll try to get David on it soon, they are getting old! Brinley has had some diahhrea today and seems to have a little rash, so I'm hoping that there's no infection or anything. We're just on watch right now.
I hope everyone had a great Christmas, now it's on to New Years!
Just wanted to wish everyone a Merry Christmas! We hope everyone has a wonderful, happy holiday! We love you all!
Brinley got her chemo today, clinic went great. She got a Hannah Montana barbie doll from them for Christmas, it has caused some jealousy with Jade....she wants to go to clinic too now! She got her meds and we got the chatty doctor again, he is great, we both really like him. Brinley had lost weight AGAIN, that is 2 pounds in 2 months. They weren't very excited about that, so the dietician wanted us to start her on pediasure for some extra calories. She went from the 25th percentile to the 5th. She said it happens often with the chemo.
As I started whining to the doctor about how Brinley always gets fevers 2 days after her chemo and winds up in the ER, and that would put us there for Christmas, he gave me a nice big peice of humble pie. He told me several patients get the fevers, and one family, who was at the end of treatment, and were used to always getting a fever after the chemo, decided to ignore it because they were tired of the ER trips. Turned out it was an infection, and it killed him. So from my own mouth: I do not know more than the oncologists. When they say she needs to be checked for infection EVERY single fever, I will listen to them wholeheartedly and check for an infection EVERY single fever. It is to be taken seriously. I realize now that her life is at stake every fever, I knew that already. You know the story about the boy who cried wolf, the wolf eventually came. I stand corrected!
Overall, this has been a great phase for Brinley. I hate to move on to the next one. We have two weeks, and then we start the dreaded Delayed Intensification. The doctor today said it is very much like induction the first month, and those of you who remember my posts from induction know it was not a good time for us. In fact, it was really awful. The steroids come back, and those made her so so sick and miserable. It is a two month phase. We have had some coasting time, now we'll be putting our boxing gloves back on for a rough round with cancer, hopefully we'll come out on top!
Well, when it rains, it pours, I guess! This morning Taylor, our 11 year old, fell down on our tile steps and split open her knee. She needed 9 stitches, it was really deep, so they did four on the inside, and 5 on the outside. That is our first experience with stitches. I always wondered how I would handle one of those situations. I guess Mom's get some extra built in calmer in an emergency, because looking back, I don't know how I didn't cross my eyes and faint right there! I have never been able to look at open wounds without getting queasy, but I somehow managed to bandage it up and get the kids to the neighbor's and get her to the ER. It went great, we were in and out in 2 hours (a new experience for us!) The worst part was her getting 5 shots right into the wound to numb it. She wasn't very happy about that, it took us about 10 minutes to convince her that the shots would be much better than feeling the doctor sew her up!! I couldn't watch the sewing part, but Taylor sat there and watched the whole thing saying "COOL!" Now that it's over, she's loving having a story to tell everyone. But no soccer for a week....it was actually kind of nice to be in the ER with a "normal" quick emergency. I really could not believe looking at her knee didn't gross her out at all, I told her she should be a nurse, and she liked the idea.
Brinley got her CBC today and she made counts for chemo tomorrow. Go Brinley! The bad news is that it will make for a rough Christmas day for her, that's usually when the fever shows up, 2 days after. Her ANC is 2700, that makes me wonder if the results were wrong on that last test at the hospital. Oh well, at least she's good now, and we can stop giving the IV antibiotics. Grouchy as ever, but good counts. Sometimes I wonder how our hearts are still beating, lol. David has been up all hours working, so he is going on little sleep already, and had to leave work today to stay with the kids, (on the worst possible day for him) so he will be working late tonight, and I'm just beat with hospitals and cranky kids. My house is a mess (today was cleaning day, I told Taylor there are much better ways to get out of cleaning!), so now I am trying to catch up on that, and laundry, UGH! It'll have to be french toast or something for dinner tonight. Yet we are alive....somehow. Don't they say what doesn't kill you makes you stronger? Maybe when this is over we'll both look like the hulk, minus the green. :) Hahahaha. That's a funny picture. I have pics to post, hopefully I'll get to it later tonight. Thanks for checking in!
We are home, a day and a half felt like an eternity at the hospital! She never got a fever again while we were there, so they let us go home. About an hour before we were set to leave, the nurse brought in the CBC results from this morning, and I noticed her ANC had dropped to 100! Remember when we arrived the day before, it was 4700! When the resident doc came in to tell me we could go home, I asked her if she had noticed, because no one had even told me she was neutropenic! She looked shocked, they had not even looked at her results and were about to send us home. So she talked with the other doctors, and since her culture had not grown anything, they decided to just send her home with IV antibiotics again. So we had to wait a couple more hours to get her first dose and make sure she had no reaction to it, everything seems to be slow motion at the hospital when you are dying to get home! I want to just do it all for them! In their defense, they have to wait for the pharmacy, I was just itching to high tail out of there. I was laughing with the oncologist that the hospital felt like a prison, so she said Brinley was going home on "probation". Any incidents (fevers) and she would be right back in there. We got a good laugh out of that. They expect her numbers would stay low since she crashed so early after the chemo, so we are probably hanging out alone this Christmas, this is the lowest her ANC has ever been.
Her red blood is low, so they want to check her Monday to see if she needs a transfusion. They considered it at the hospital, but the onc and I agreed to wait until she really needed it, since she seems to recover and has only needed 1 transfusion so far.
I was so frustrated when she got her fever. I called the oncologist when Brinley got it and tried to talk her out of making us go to the hospital. She gets this fever every time, 2 days after her chemo, and it's never an infection. I know we are better safe than sorry, and I would much rather have that approach by our doctors, but David's party was that night and we were on our way, and I was really excited to go hang out with the people he works with, some adult time!! Oh, how I hate to miss the fun! I was so close to telling the oncologist that this whole cancer thing was sure inconveniencing our lives, but I was pretty sure she wouldn't think I was funny, so I kept it to myself. Lol. She said we needed to be there within the hour, so I said okay, and brought my disappointed self and Brinley to the ER. Ugh. It was really awful. They took longer than usual to get us a room, and it was late, so Brinley was grouchy, and just taking her vitals made her scream like crazy! She wouldn't calm down, and couldn't take off her mask, she was yanking on it and flopping her body all over. I finally just sighed and let her get it out, I'd be pretty ticked too.
Yep, they didn't let us go today. They want to make sure the culture comes back clean tomorrow, so they want to watch for fevers in the meantime. So far she hasn't had any. She was going on 4 hours of sleep all day and wouldn't nap, so it was a rough day with lots of meltdowns and puffy eyes. We finally had them give her benadryl at 7:30 and she's sleeping now, hopefully all night. I'll know more tomorrow.
Brinley got admitted to the hospital last night. She got a fever right after our party for Cancer Families, and wound up at the ER from 9-2am. They decided to admit her at 2AM even though her ANC was 4500 because her heartrate was really high, and after 2 bags of fluids, it wasn't coming down. That made them nervous, they said it can be a sign of infection. I suspect she'll be released today as long as her HR is okay, since her numbers are so good, unless there is an infection. I'll keep posting updates, hopefully we are home this afternoon. I came home at 3 and David stayed there, I'm heading up there soon so he can go to work.
Today was clinic day, she made counts yesterday so she was able to get her chemo. Her ANC was 1600, that's pretty high, so they escalated the methotrexate to 130ml's, and I am a little nervous about that because she was at 100ml's her first dose when she crashed. Last time she only got 80ml. So we will see how she does with this amount, she would be crashed right in time for Christmas, so I'm kind of planning on having a small family Christmas this year...we'll see. She also got the vincristine and the chemo in her spine, so she was sedated. She did great with the sedation today, thank goodness. I get so nervous every time. The anesthesiologist gave us the option of putting a tube into her lungs so if she vomited again she wouldn't inhale it, but he said she'll be sore from it, so we decided not to do it. That was the right choice, she didn't have any problems at all. She woke up pretty happy, so she must be getting used to it. Clinic is always is so exhausting, it seems to take them forever just to do simple things, there is so much waiting involved. Our appt was 8:00, and I was really hoping to get her chemo in before the lumbar puncture at 9:30 in the RTU, because then we can just go home from there. But we were a few minutes shy, so we had to come back up after her LP and wait again. We got done around noon. They said she bled more than usual on her LP, so I'm watching for pain and stuff like that. I'm gearing up for a rough few days, but we feel ready!! We've had a nice break...
One thing I have truly learned from this experience is gratitude. I feel like my eyes have been opened to all the little things that are around me. I titled this post "choosing gratitude" because I really believe it is a choice we have to make. We can all find some things to complain about, no matter where we are in life, and sometimes the negative can feel overwhelming. We also all have things to be grateful for, our lists may look quite different, but we can all choose to be grateful people, wherever we are. When I start to focus on the negative, I realize how quickly those negative feelings can be turned around. I just wanted to write down some of the things I can be grateful for even during these times.
1. I am grateful for co-pays, deductibles, and the 20% that we have to pay for medical bills, because, although it can feel overwhelming, it means we have insurance and do not have $60,000 in medical bills to pay.
2. I am grateful for the bills we have to pay, because it means we live in a warm house, with food and electricity and all the things that money pays for.
3. I am grateful for our weekly visits to the hospital for Brinley's chemo, because it means that she is alive, and fighting.
4. I am grateful for the complaining my kids do because it means they are comfortable enough to be themselves and tell me how they feel.
5. I am grateful for the mess to clean up every day, because it reminds me I am surrounded by people I love who have a place to put their things, even if it's not in the right spot :)
6. I am grateful for a Christmas with no money because instead of rushing out to finish up shopping, we are spending time as a family and enjoying the season more than ever before.
7. I am grateful for all the extra help I have needed around the house because it is teaching my oldest daughter how to work hard.
8. I am grateful for a husband who is just as stressed as I am, and gets frustrated like I do, because it means I have someone who shares my feelings and understands me, and who also would give his life for our children. And it means I have a partner to go through life with, disappointments, sorrows, joys, happiness, we get to experience them together, and I can look at him and know we are fighting this side by side.
9. I am grateful for the pain that I feel, because it means I am alive, and can just as easily feel joy as pain, and after the storm I can see the sunshine, and that makes the storm worth it.
10. I am grateful for all of the advice that I get :) because it means I have people who love us and care about us, and want to help us in any way that they can, and any advice we get comes from the heart of a person who only wants the very best for our family.
11. I am grateful to be in a position to need help from the outside world, because I get to see the good there is out there, and experience firsthand the generosity that other people show, to use as an example to follow when I get the opportunity to pay it forward for someone else.
Yeah, yeah, quite a different post from the other day, but I AM on a roller coaster, remember?
Update: Brinley is doing great, happy as can be, seeming perfectly normal. Her next chemo will be Monday if she makes counts. We are crossing our fingers that she will. We are trying to be cautious about her being around people because we have no idea where her ANC is.
We are truly having a wonderful Christmas season and are feeling very blessed.
This is one of those thinking too much at night posts...but every night when I rock Brinley before bed I sing to her, and think...and think....and sometimes cry....and think. Here are some of the things in my head.
Now that the diagnosis has sunk in, it feels so normal for me to say "My daughter has leukemia". I can talk about it like it's nothing to a perfect stranger. I don't usually choke up talking to people, and most of the day I feel like I am plugging along just fine. We are handling this, and that feels good (of course we are in a good part of treatment). Then there are times when I look at her and realize what she looks like to the rest of the world. I forget when we go to the store, or church that people are looking at her, and she looks like a cancer patient. Her legs are skinny, her hair is just growing back in. This feels like it isn't really my life. Like when I see a family with a sick or handicapped child, and give them a sympathetic smile and wonder what life is like for them. We have become that family overnight. So totally unexpectedly we were knocked out of our normal world and dropped into this different world without warning. Sometimes I think my head is still spinning from that change. But the reality is we are adjusted and this sometimes feels normal.
Sometimes. Then there are times that I want to scream. So many people have said "she will make it through this", myself included. If I really start thinking about it, I am terrified. Brinley still has a 90% survival rate. That is high. Kind of. When I think of 10 kids standing in a room, and mine is one of them, all with the exact same odds, and I know that one of those kids is not going to survive, that is terrifying. One in ten! If the odds of winning the lottery was 1 in 10, how many more people would be buying lottery tickets? I know I would. The scary thing is we have years before we are out of the woods. There is a girl that is very much like Brinley, diagnosed with the same thing at almost 2 years old, went through the same treatment for 2 1/2 years, 3 years AFTER she was off treatment, she relapsed. Three years later! She then had to go through much harsher chemo and they almost lost her several times. She is off treatment again now, and they have to just pray it doesn't come back. That could be us. What if she is the one in ten who doesn't make it? Who would let their kid go to school if there was on 1 in 10 chance of them getting shot? For a school of 500 kids, 50 would be shot and killed. The school would be empty. I don't mean to sound ungrateful for those odds, because certainly when it comes to cancer, those are good odds. But I want better odds when it comes to my daughter. That's not good enough. Brinley had a .01% chance of getting leukemia, and here she is, with leukemia. So please don't tell me you KNOW she will make it through this, because one of those 10 kids isn't going to, and who's to say it won't be mine. Someone has to lose a child somewhere, or we wouldn't have the 10% death rate. None of us know the outcome of this, and I have been known to say it will be good, but the truth is we don't know what is in store for Brinley. That is the reality that I try to escape every day, until I am rocking her and it is quiet, and I have my thoughts to myself and my baby there in my arms. What is her outcome?
These last 3 days have been a huge improvement from Sunday. I guess the chemo is wearing off, and Brinley has been feeling much better, and I am regaining a little sanity...In fact, it has felt so normal this week, I've been forgetting she even has cancer. She's walking a lot better, and faster, and has been a normal 2 year old, normal tantrums, normal silliness, it's been nice. I guess I kind of like this phase so far, because since there is a 10 day gap between doses, she has a chance to recover and feel good for a few days. I'm hoping her numbers aren't crashing as I'm speaking...So we'll have to get through those first few days after the chemo, then hopefully we'll have our normal Brinley back for a week before the next dose.
I'm also preparing for battle with the insurance company, we got some claims today, the original hospital bill included (finally!) with Brinley in-patient for a week, and there are a lot of charges they are not paying, so that caused a little hyper-ventilation on my part. I was on the phone with them today, they are going to review it and hopefully straighten it out. If not, we are in a world of hurt with the medical bills!
That's the only way I can describe this weekend, bittersweet. Friday I watched Taylor play soccer, always fun, and the best part is my mom is in town and kept the kids!! So I just got to go watch without chasing down kids. Then David called and had gotten Jazz tickets from work, so we went to our ward Christmas party and snuck out early to go watch the Jazz. We put Brinley to bed and Taylor is getting into babysitting age, so she babysat. The seats were great, and it was so much fun. And they won. Good times.
Saturday we got together with family for Emily's baptism. That was fun to see everyone, I always get nervous around that many people, but Brinley's counts were good, so we figured it was fine. We got home and started cleaning the house, then Brinley got a fever. My mom came and got the kids, and David and I headed to the ER. When we called the oncologist, he said it might be quicker to just go to the closest ER since her ANC was so high, and have them draw blood to get her counts and do a culture. We debated, we were nervous to go anywhere else, but finally decided it was worth a try. Wrong choice. We were there for four hours! They did not seem very clean, and David and I have become very aware of germs. The minute they walked out of the room, David grabbed the alcohol wipes and went to town sterilizing the room. The doctor came in (very nice doc) and shook our hands, gave Brinley a high five, talked to us for a few minutes, and then said "Let me wash my hands and take a look at her!" Uh, you didn't wash your hands before you came in!! What was the patient before us here for? Some contageous disease! We are used to a sanitizer bottle outside the door, and anyone who comes in is already rubbing sanitizer on their hands. Anyways, we loved the nurse, but they weren't trained in how to draw blood from her line, so we had to walk her through it. It was funny feeling like the expert. Both the doctor and the nurse asked us several questions about how they usually do things when we go to Primary's, so we felt like we were running the show. "Okay, you need to do a CBC and a culture, check her counts first. If her counts are good, give her an antibiotic and we get to go home, if not give her an antibiotic and send us to get admitted at Primary's. Simple as that." But he insisted on doing a chest X-ray, a machine that strapped her down with her arms stuck in the air, she screamed the whole time. Then we had to wait for the doctor to talk to the oncologist to tell him what we already knew, overall we were there 4 hours. Never again. Her ANC was sky high for a cancer patient, 4200, so we got to go home, but he did say that her lung weren't quite filling up all the way, whatever that means, but he wasn't worried about it, no pnemonia spots.
Today she hasn't had a fever, but she has been so grouchy. She has just cried and cried all day. It has been a rough day, that's an understatement. We had to cancel our plans to put up Christmas decorations Saturday because of the surprise fever, so we did that today. It was fun, but I just don't know how to handle Brinley sometimes. I know she doesn't feel good, it's just so hard when she is crying all day and we have to be parents to all 3 kids. During dinner she cried the entire time, and none of us could even hear. I was just imagining a newborn baby thrown into the mix.....how will I do it? I have no idea. It's really taking a toll. I'm hoping she will be feeling better soon, usually when I am about to snap, things go a bit better, and I am about to snap. I just want to break down and cry with her sometimes, it can be so overwhelming and exhausting. I better stop there for today, because I am feeling discouraged, but looking back over the weekend, we had some great times and some tough ones. That's life, right?
Oh, I forgot a good moment, my mom kept Brinley and Jade so David, Taylor and I could go to Stake Conference (church) and it was so great! I got so much out of it, and I actually got to sit and cuddle with my husband! No chasing! It was definately a high point! They had some great messages.
Brinley made counts this week with flying colors, ANC was 2700 yesterday!! Woah! So we went in today to get her chemo, she got the methotrexate and vincristine. It took a while, of course, we were there for over two hours again, first they had to give an IV medicine that helps with nausea, then they gave the other two. We saw her usual doctor finally, after well over a month, then we saw an oncologist we hadn't seen before. He was quite the chatter box. We talked a for a long time about her walking, he explained a lot of the things they look for to be concerned about. She's walking pretty funny still and falls a lot, so we are just watching her for now. He feels like if she's happy and functioning okay, and it's not affecting her life too much, which is true, we shouldn't worry too much about it for now, just keep an eye on it. I kept asking questions because I was enjoying his willingness to take time to explain things to me that I had been wondering about, but I think David was shooting daggers at me with every new question, because it would be a 5 minute explanation for each one. Poor David...lol. But I was learning a lot because he wasn't afraid to tell it to us straight. I asked about relapse, for example, and how common it is, and he was very straightforward, instead of reassuring us that she would be fine, he was honest and upfront. It was nice.
She had lost a little weight since last time, so we met with the dietician about her eating. She advised us to switch her back to whole milk (we recently switched Jade and Brinley to 2%), hopefully that will help. Jade could use the fat on her body too! I don't like hearing she has lost weight, but it wasn't a ton, so I won't get too overworked about it. Chemo does that kind of stuff.
Next week she will go to the orthopedic specialist to see if her bones that were fractured are healing okay and not affecting her growth. They can help us decide if we should con tine physical therapy or not. If her walking issues are just a side effect of the chemo, then there isn't much physical therapy can do for it, we just have to let the medicine wear off. She has two more doses in this phase of treatment, then we move on to Delayed Intensification in January if she doesn't have any setbacks. Next visit she will have a lumbar puncture and get chemo in her spine. It's funny, I always feel fine while we're at clinic, but feel sad afterwards, I guess I do a lot of thinking and it gets me down a bit. I hate putting all this poison into her body. I feel so helpless to it all. Sigh. To make things just a little worse I got a ticket on the way home :(
I hope everyone had a great Thanksgiving. We sure did! We were able to avoid the hospital by the skin of our teeth, Brinley ran a 100 fever Thanksgiving and the next day, but never got above the 100.4 that would have her admitted. David reminded me that she always seems to get a fever after the vincristine, so I'm pretty sure that's what it was. So we got to be with our family, and ate and ate and ate. We played games that night and had tons of fun. The next day was more of the same, we just hung out with family, watched the fever, and went nuts with the hand sanitizer. Yesterday was good, we couldn't take her to church because of her ANC, so we switched off classes, I had to teach Sunday school, so David came home after Sacrament Mtg and I went to the rest. The nursery leaders said they really miss Brinley, hopefully she will get to go again soon. It seems like a rare occasion now when we can all get to church together.
The home health nurse came today the get her CBC, so we'll know her counts later this afternoon. That will tell us if she needs a transfusion. She still looks really pale, so I'm sure they are low, the nurse things she looks like she needs one.
We had some fun surprises this weekend too! We got a package in the mail from Taylor's old soccer coach Amie, in Las Vegas, with presents for all of us, it was fun and the kids loved it! Then my mom brought something from the Young Women in her Ward in Las Vegas. They had put together packages in pillowcases for each one of our kids. They were stuffed with toys, hats, blankets, all kinds of things. It was like Christmas for them, they loved it so much. It is so nice to have people out there that are willing to put a huge smile on my kids faces while our lives are so different than what they used to be. It has made this easier for them. Sometimes I feel guilty for accepting so much, but then I think about what all of my kids have had to endure, and I realize that they deserve a little something special, knowing that someone else was thinking of them and took the time to do something special. We also got some Mr. Potato Head toys from a friend of my mom's in Vegas, and it has been a hit too! Needless to say my kids have had a great weekend!!
Brinley went to get her chemo today. She is getting used to the routine and actually enjoys clinic sometimes. Today they were giving away bags that were donated by someone for the cancer patients. I wondered who had put it together, and I wished I could have sent them a picture of how much she loved it. I remembered doing all those service projects with the church and not being able to put a face on who would be receiving it, and there we were on the receiving end, watching my daughter's face light up to see the toys in the hand colored canvas bag. That was the face they would not get to see, but did the service anyway. It was touching, and this time, I wanted to see the face on the other end, the person who sat and colored a bag for my daughter and stuffed it with goodies to make her day a little brighter.
We had to wait for quite a while today for the chemo because the NP forgot to order it from the pharmacy, (grrr) and they were very busy. So we sat, and sat, and sat, until over an hour had gone by. It had already been an hour of waiting to see the doctor, so it was a little frustrating. The nurse finally brought it and that was that. They want to check her counts again on Monday because they were still concerned about her red blood count and a possible transfusion, so we'll check Monday, then Wednesday, and then Thursday will be next chemo day. I was concerned about her eyes, they are still red and puffy, the onc said it's possible with her ANC so low, the bacteria that gets in her eyes is irritating them with nothing to fight it off. If it gets worse, or gunk starts coming out of them, we need to call. They also made me nervous because the NP noticed she was walking with her foot turned in, which I had not really noticed. I knew she was walking different, I just figured with her just starting to walk again, it would take a little time to look normal. But the NP said that the vincristine can cause the kids to walk that way long term, and she seemed concerned. Now that she said that, I notice it every time she walks. I am very nervous about long term affects of the chemo, so I don't like that at all. She saw the physical therapist last week and has improved quite a bit since then, we will see how it goes.
I hope everyone has a wonderful Thanksgiving, we are very excited for turkey day at our house! Nothing like getting totally, completely, stuffed and then trying to roll yourself home. I am missing David's family this year, and wish we could see them. It's not the same without them and this is the time of year I love to be surrounded by family. We have so much to be grateful for, I feel it this year more than any other year. Funny how that works, you would think it would be the opposite, but I have found so much good in my life lately and am overwhelmed with all that we have been blessed with. This has been a rough few months, I can't even type this without tears sneaking up, as they do so often lately, but the tears come as quickly for the hard stuff as they do for the good stuff, and we have a lot of good stuff. Happy Thanksgiving!
Brinley got her CBC this morning to see if she can get chemo tomorrow. Her ANC went down to 200, so she will not get the mexotrethate, but they do want to give her the vincristine. So we'll go in tomorrow for that. Her red blood went up from 24 to 25, so she won't get a transfusion today unless we notice major changes in her. She's not feeling so great today. Her eyes are all red and puffy, she has a runny nose, and she is hovering around 99 temp, so we are praying no fevers come now to land her in the hospital over the holiday week. Other than that, no new news.
The nurse called this morning and we have changed plans this week. I guess they are closed Thursday and Friday, so Brinley will not be able to get the chemo on Friday. So they want to shoot for Wednesday if her counts are back up. I don't anticipate that they will be, but it's hard to tell. Her counts are either still dropping or on their way back up, so they will do a CBC tomorrow to see where she is, and if she is above 500 ANC, she will get her chemo Wednesday. Also, since she is borderline on her hematocrit (red blood cells) for a transfusion, they may want to do a whole blood transfusion tomorrow or Wednesday. The nurse thinks her hematocrit may still be going down since she was low when they gave her the chemo in the first place. We may have a couple hospital trips this week, hopefully no fever visits! She has a runny nose today, if she has a virus that would explain the low ANC. She still seems to be feeling fine, but she is irritable and quite pale.
We got Brinley's counts today. Her ANC is 300, so she can't get her next dose of chemo tomorrow. I will talk to clinic tomorrow, because I'm not sure why she crashed so quickly and what that means for the dosage she gets next time. I'm disappointed to have her treatment pushed back again. What will happen now is she will be given four more days to get her counts up. If she doesn't get up to a certain point (I'm not sure what her ANC has to be) she will go in on Friday and get only vincristine and not methotrexate. Vincristine doesn't affect your counts, only the methotrexate. She will have to wait on the methotrexate until her ANC goes up.
That means she is neutropenic again and we will be home all week. We will see about Thanksgiving, there will be 20+ people at Melanie's, a frenzy for germs. Melanie said she would just spread the word to let her know if there are any colds coming, and one of us will just keep Brinley home if anyone is sick. I really wanted to have a worry-free week for Thanksgiving, but it's not working out that way, but then when do things work out just how you want? Her red count was also lower than last time, close to transfusion, but not quite. She looks really pale to us, so I'll watch her this week for energy level. Now that she in neutropenic again, I get very nervous about infections. She woke up at 1 last night crying "ow" but couldn't pinpoint anything that hurt. She wouldn't go back to sleep, we had to finally give her benadryl to help her sleep. Once she was out of her bed, she didn't seem to be in pain, but the last couple days she has been pointing to her tongue saying ouch, and every diaper change she cries that it hurts. I can't see anything, so it is driving me crazy! I wish I knew if there was something there that I just can't see and she really is in pain, or if she is just saying ouch to some other sensation. I suppose if she is getting any mouth sores, they will show up soon.
She is, however, still silly and happy for the most part, so that is good news. We had a great weekend and enjoyed the time together. Let's hope she bounces back with her counts, so we can get this dreadful chemo over with!
I haven't written, but things are going just fine. Brinley is feeling fine and the jaw and leg pain seem to have disappeared, so the vincristine must be out of her system. I, however, have been more frustrated than normal. I have no excuse and have been quite disappointed in myself, I generally have a good attitude. So yesterday I turned a corner. I was feeling so bad about everything that was totally out of my control. It was consuming my thoughts and I couldn't concentrate on anything else, except these things that I can't do anything about. I try not to write too depressing stuff, which is why I haven't written much (okay, sometimes I write depressing stuff, I know). So here's the good news, yesterday I told myself ENOUGH! I made a list of all the things I can't control that are frustrating me. Then I made a list of the things I CAN control and hung it on my fridge and decided to focus on that instead. It completely turned me around! My list looked something like this:
Things I cannot control:
1. The cancer in my child's body, whether or not she will be cured.
2. Side effects that are caused by the chemo, short and long term.
3. The bills that come in.
4. The amount of income we have.
5. Medical bills.
6. The phase of life I am in.
7. The feelings of my children.
8. The actions of others.
9. How I am treated by others.
10. The trials I will have to go through.
11. How many hours are in the day, and how much I can do in them.
Things I can control:
1. My face - smile, frown, make up, hair.
2. The way I treat other people - family, friends, strangers.
3. How clean my house is. (Okay, so that one can switch from list to list, depending on the day :) )
4. The time I spend with my kids, and husband.
5. The way I handle money issues, what to spend money on.
6. How I help Brinley cope with side effects.
7. The way we choose to live.
8. How happy my family is. (doesn't that directly depend on how happy mom is??)
9. My spiritual well being.
10. What I choose to do with my time, priorities.
So all day I looked at my CAN control list, and worked on those things. It really made a difference, I can control a lot of things about my life! I can smile at my family, even during tough times! I can control that, and I did! Sounds trivial, but a big deal when mom is always stressed. So I will leave that list on my fridge until it is in my head permanently. Please don't think I'm a grouchy old hag, I just haven't been myself. It's funny how discouragement creeps in and slowly overtakes you without you even noticing. Before you know it you are a different person and it's affecting everyone you come in contact with. Well, I'm giving it the boot!!! (don't hold me to it forever, surely there will be off days.....and you all know I'll write about it when it comes!!!)
Brinley has been tagged by Serenity. http://www.liftingupserenity.com/
7 things you may not know about me:
1. My favorite song is "Pumping up the Party" by Hannah Montana, I love to sing along with my sisters.
2. I love to run and pump my arms as I go like the girls on my sister's soccer team, except I stick my arms straight up in the air and pump then at the sky.
3. I have been know to hit or push or take away a toy just so that I can smile and say sorry and give a hug.
4. I like to tell my family I am "peeping"(sleeping) and close my eyes until somebody says "Oh, Brinley is sleeping, shhhh!), then I smile in my sleep.
5. My favorite thing to say when I am mad is "FINE", I don't know why I say it, but I hear my sister say it when she is mad, so it seems like the thing to do.
6. I love mini snickers and lollipops, and I will take one bite out of it and give it to my mom then ask for another one. I guess I don't like to eat my own germs.
7. By the time I was six months old, my parents knew that I was the feisty one in the family, and I have held true to that, cancer doesn't stand a chance against me!!!
I am tagging Abe and Hank!
Brinley is having some jaw pain this weekend, and this morning is saying her head hurts. I'm sure the jaw pain is from the vincristine again, we had to give her oxycodone Saturday because she was crying so hard, but it hasn't been quite as bad since. We all went to church and Brinley was able to play with her friends in nursery, she had fun. All in all, it was a good weekend. I'm curious what her counts are at, we won't find out until next Sunday.
Okay, I am officially losing it. Selfish post....here goes....I CANNOT keep track of everything any more. This morning we had an appt with the ear doctor with Jade, then swooped over to clinic, working out pre-school rides and such, getting new calendars and new drugs to keep track of, and realized on my way home that I have to call our realtor about our house in Vegas (he has been waiting for our return call about a week now), the insurance company, who I pretty much talk to every day, grrrrr, that's another story, (and I really believe there is a special radar hidden in the phone that somehow gets a message to my kids to scream, or fight, or cry the minute I pick up the phone to make a call), our cars aren't registered yet and I am driving illegally (we registered them tonight, finally), Taylor has piano, and soccer tomorrow, and doesn't have indoor cleats that fit her yet (I promised her to have them by tomorrow so she doesn't have to wear shoes 2 sizes too small again), I have to go to the water district, I have to call our landlords, I have to balance our checkbook and pay the bills that are now surely late, work on the medical bills to figure out which ones are ready to pay, AND watch The Office (yes, David and I WILL watch the office tonight!!!) I could literally go on and on, but I think you get the point. In the process of thinking of all of this I get a phone call that went something like this:
Hello Kristin , this is Beverely with Dr so-and so's office.
Kristin: Oh, Hi Beverely.
Beverely: Are you on your way?
Long awkward silence.
Kristin: I'm sorry, what type of doctor is Dr. so and so? Because we are seeing oncologists, ear doctors, bone doctors, pediatricians, family practitioners, dentists, and so on, and that name means absolutely nothing to me.
Beverely: He's a heart doctor.
Kristin: OH! The heart guy!!
Beverely: You aren't coming, are you?
Kristin: No. (another awkward pause) I'm at the hospital getting chemo for my daughter, I guess I won't be making that appointment. I'm so sorry, blah, blah, blah, please don't charge me the $50, I didn't know I made 3 appts in one day, why didn't I get a reminder call??, I know this is the second time I have been a no show, but please forgive me for being a complete flake. That's the way I roll these days. (I didn't REALLY say that last part)
And this is how my life is going. Parent teacher conference was full of apologies for not even meeting her teacher until that point, I could barely remember her teacher's name when I had to take her out of school for flu shots. I was lucky I made it to parent teacher conference at all. "I'm sorry, it's Sunday night and you have a book report due tomorrow? Good luck with that." Hmmmmm...And I'm going to have a baby. Oh my goodness, I will be in a coma by March, I'm sure of it.
Oh, and clinic went great, by the way. Brinley is actually liking going now, she played with the toys in the infusion room while getting her chemo and was happy as can be. The drugs for this phase will be vincristine (she's had that in the first phase, the one that causes her jaw pain and loss of appetite) and a new drug called methotrexate. Side effects: mouth sores, nausea, vomiting, loss of appetite, abnormal liver function, low blood counts. Each visit (every 10 days now) they will increase the dose of methotrexate until her body can't take any more and she crashes. They are trying to find the maximum dose they can give her before her body crashes, so they said it can get rough towards the end, depending on the kid. Hopefully Brinley will handle it all. I want to cry today, don't know why. She's truly happy and feeling well. But I still want to cry. Writing all of this like it's nothing....like it's normal. It's not normal. I thought in clinic how very ABnormal it is to be simply nodding my head as they are explaining that they will give her medicine that can cause liver damage, kidney damage, mouth sores, vomiting. And I am nodding my head saying okay, give it to her. And increase it every time to see when her numbers totally crash. What is wrong here? Cancer sucks. The docs are great, I love them for going to work every day to try to save lives, and I know they HAVE to do this to save Brinley's life, but cancer sucks. It really, really sucks.
We had the home health nurse come today to check if Brinley's counts were good enough to start Interim Maintenance, and they all looked good. Her ANC is 1700, lower than last week but still great. The only thing that was low was her hematocrit again, still hanging on at 26, not low enough to transfuse unless she is pale and low energy, which she isn't. I was also informed that she will NOT need the lumbar puncture tomorrow so she won't have to fast or be sedated. That was great news. She will just get the vincristine and methotrexate in her line. I'll post more tomorrow after clinic.
One of the members of the ALL list lost her son last night and my heart breaks for her. Please keep the family of Will Hopkins in your prayers, surely their hearts are empty. They have had a long journey and his body could not take any more. You can read about him at www.caringbridge.org/visit/willhopkins.
Has it really been 5 days since I've had anything to say?? I guess we've been enjoying the good counts and getting out of the house! I have some pics to put up too, but that's David's job, so maybe tonight. Things are good on the homefront, we had a great weekend going wherever we pleased, we went shopping and got some winter stuff (being from Vegas we were NOT prepared for this cold weather, it was a lot of $$$ buying everyone coats, gloves, boots, etc!) Thank goodness for the 30% coupon I got from Kohl's, they must have known we needed it!! We have also been able to go to church together, to a birthday party, grocery shopping, and a picnic in the park. Fun, fun. We all got our flu shots yesterday, so we are taken care of there. Our pediatrician was nice enough to just do our whole family for $5/person because of our situation. That was very helpful and convenient.
Brinley is happy and is even getting some hair back for now, it will fall out again I hear during a later phase, but right now it is coming in old man style, the top has blond peach fuzz and the back has dark hair in a nice strip. It looks funny. Brinley will start her new phase, Interim Maintenance on Thursday, so she will be introduced to some new drugs and I am a little nervous about it. I hate to think things could get bad again, but I'm also trying to stay prepared for anything. It's weird to see pictures of her now with hair, it's like it was in a different life time. I represents a whole different world to me and sometimes makes me a little sad. I miss her hair. Her legs are so skinny now, and I miss her chubby legs (I guess she was never chubby, some of you are probably laughing, but the were chubby compared to now!!) But I have also learned to appreciate her bald little head and I know I will miss kissing it when her hair is back.
I will ask at clinic this week about her dressing around her line. She seems to be sensitive to all of the adhesive, we keep trying different bandages, and her skin keeps getting more and more irritated. I'm starting to wonder if the port would be better for her, it's such a pain to have this line, but I'm not sure about going that route just yet because I know she will have to get poked every time they access her port, so I will see what they say. A lot of kids Brinley's age have the port instead and seem to find it quite convenient since it is under the skin and not hanging out there.
She has to get another LP (chemo in her spine) so she will need to be sedated again. I'm hoping it will go as well as last time. The only appt time for the LP they had is 2:00PM, and she has to fast 6 hours prior. So I am not excited about Thursday and starving her all day again. She is going to be MAD! As long as her counts are good, we should be able to start IM right then. As far as I understand she will get the chemo in her spine, the vincristine through her line, and methotrexate through her line. Methotrexate is the same drug they use in the spine, but I'm not sure how she will do getting it intravenously. I'll post more when we go to clinic on Thursday.
For now we are doing great!
The nurse called today and gave us some good news, Brinley's ANC is 2200! Woooohooo! And everyone is better, so we high tailed out of here to go to lunch with Daddy, then we all went to Taylor's soccer game. I think Brinley was quite happy, as was I. Her other counts were low, red blood and platelets, but not so low they will transfuse. So we will be having some fun out of the house this week, we should all be able to go to church together Sunday, which has only happened once since her diagnosis!
Some more good news, but first I have to give a little background. We have really been struggling with Jade, I think she is getting the short end of the stick, Brinley is SO demanding that Jade sometimes gets left in the dust because she will play by herself, or watch a movie, and Brinley won't do anything without me. As a result, Jade has shown a lot of resentment towards Brinley. It has been making me really sad and I am trying to understand from Jade's perspective, but she can be so mean to Brinley! It's hard to be patient. Yesterday she even said "When Brinley has long hair again, then I will be nice to her again." Knife to the heart.....anyways, today was a breakthrough. First of all in her prayers last night, Jade said "bless me to be nice to Brinley so that Jesus will be happy." Today, Jade realized that she can tell Brinley what to say and she will happily say it. So she has been playing with her a lot of the day, they played dolls and Jade ran the show, and then for lunch they had a little tea party and Jade actually ENJOYED Brinley's company. I actually took pictures because it just never happens. I was so happy! I'm hoping it will keep up, it has really been a challenge to help them get along, poor Jade is just needing my attention so badly, but Brinley is always within 5 feet of me, she won't nap, I am never away from her so that I can have a few minutes with Jade. Frustrating!!!! Hopefully today is the beginning of feeling some sisterly loooooove.
While things are going so well for us lately, I would like to request some prayers on behalf of some other kids who are not doing as well right now. I talked before about an online list I joined with parents of kids who all have ALL and often get updates and prayer requests from them. I wanted to share a few with you and see if our prayers can't help them too.
Serenity's is the first blog I read when Brinley was diagnosed. She is the same age as Brinley and is a few months ahead of us in treatment. She is currently in Delayed Intensification, a more difficult phase, and has been in the hospital very sick for several days. She has a very high fever and has been vomiting with diarrhea. Her ANC is very low, so if she has an infection (they are waiting for results) her body can't fight it on it's own. I have not heard an update today, but as of yesterday she was not doing well at all. Please pray for her and her family that she will recover a be able to go home soon.
Kaylee is another child Brinley's age who is also in Consolidation (same phase as Brinley) and had been in the hospital for over a week with a possible fungal infection. These can be very serious, and she was not doing well at all. Her ANC had been at 0 for weeks, and was not improving. My heart goes out to them, please send them your prayers.
Avalon is a little girl who had a stunt put in her brain, and had an awful surgeon that made some serious mistakes that are irreversible. She has already been through hell with the cancer, and now she will have permanent damage to her brain for the rest of her life, specifically her memory, because of an incompetent surgeon that made incomprehensible mistakes. I cannot begin to fathom what they are feeling and going through right now, but they could use the prayers.
There are many others on the list that are struggling, these are the specific ones I wanted to share with you, but I pray for the kids often and am feeling very humbled for whining about feeling cooped up - we could be cooped up in a hospital room! I am learning so much from these people, and I wanted to share while things are calm for us.
I just wanted to do a quick post about what a wonderful weekend we had. We had no soccer this weekend, so David and I got up early and cleaned the whole house top to bottom. Those of you in charge of the housecleaning know how this put me on cloud 9! That night we watched Kung Fu Panda with the kids and it was so fun to just have a day to relax in a clean house.
I haven't updated in a few days because it been a rough week, but for no reason in particular. I guess the sickness kept us in all week, and kept me in a foul mood (especially MY sickness!), and with Brinley being neutropenic, we are once again stuck. This being stuck home stuff is getting so tiring for all of us. All morning she has been saying "go bye bye!" Jade got to go to her cousin's house, but we can't go because we managed to pass on our virus to them as well Since Jade is on the tail end of it I figure she won't catch it again, we'll just do a good scrub down when she gets home. But Brinley is quite jealous of her sister's outing. I finally threw Brinley in the car today after we made a deal we would go to the store if she wears a mask. She HAPPILY agreed, obviously sick to death of being home too, and we went to Kohl's to return some stuff. She willingly wore her mask the whole time, and it was nice to get out. We have miraculously managed to keep her from getting this virus thus far and are quite proud of ourselves for it! I had already deemed it impossible, but now we know, hand washing and masks are key. Hopefully I am not speaking too soon.....
We have decided to take Brinley and Jade trick-or-treating, hopefully it is not too risky, we will just be sure she keeps her distance from people and we will bring along the hand sanitizer. She is so excited, she's going to be a mouse. Now that she's walking better, I think she will have fun.
I can't believe how exhausted I feel just from being home with Brinley all day. She is really draining lately, wanting to be held and played with most of the day. She has lost her appetite and I don't know why. She hasn't eaten more than 2 bites of eggs all day, and has refused most everything else I offer. I'm feeling in a bit of a rut and am trying to dig myself out of it. Hopefully next week will be better. Part of the problem is also that you would THINK being home all day would leave me with a nice clean house, since I am here all the time. But it's having the opposite effect, Brinley isn't letting me do anything, not even fold laundry, and she refuses to nap. AHhhhhhh! Frustration!!!!
Here's another downer: Taylor is in my favorite place. Disneyland. Which would be fine except I was supposed to be with her! We planned a trip with her friends before we moved from Vegas and me and another mom were going to take them to Disneyland. Taylor gave up a birthday party, all presents from us, and saved all her money to be able to go. We decided it was not very smart for me to go too, both financially and for the family, so I had to send her off. Luckily I know she is in great hands with her friend's mom, but I sure wish I was there with her. There's that Hanks in me again, bummed to miss the fun!
After listening to myself I realized I am really starting to sound like Eyore, woah-us me (sp?). So I shall post a teeny little positive paragraph, LOL. Fall is beautiful in Utah. All the leaves are so pretty and I love driving down the street and seeing all the leaves fly around me. We really love it here. Brinley is alive. We are surviving and this is feeling like our new life. Brinley's personality is back, and I cry every time I think about that awful month it was taken away, and here we are, appreciating how funny she is more than ever. We are settling into not getting enough sleep, constant medication, hospital and doctor visits, and it doesn't seem so bad anymore. Although I tear up often when I think of what we are going through, I still feel so grateful for how lucky we are. I had a particularly bad day this week, and received a phone call from a member of my church, who picked a bad time, or a good time, depending on how you look at it, to call. I cried her ear off, I couldn't stop. It was ridiculously embarrassing, but she was at my house within 2 hours with chicken noodle soup to help me feel better and a card. That night another member of our church brought us dinner. Alissa took my kids for a few hours so I could lie down and rest (I was quite sick) and I just thought about how lucky I am to have the support I have when things are rough. I am reminded of a talk from conference by Elder Wirthlin about loving our trials. Sounds crazy, right? I have loved the little things about this that have brought me joy, and there has been so many of them. And it is greater joy that I would expect to have, so I will LEARN to love this trial, even if it isn't until it is all over. Brinley is an angel to our family, I hate what she is going through, but if it means taking the bad along with her, we'll take it. We love our sweet Brinley. Surely there are more storms to come, and we will prepare as best we can for them, and then just survive. Right now I feel like that is exactly what we are doing, surviving, nothing more, nothing less.
David took Brinley to clinic today alone because I'm sick and didn't dare risk getting any of the cancer patients there sick too. She did really well, but her ANC plumetted, it's at 500 now. At the hospital last week it was 5000! So now I'm really nervous about her catching this virus with her immune system not working well. So we will not be able to take her places again.
She got sedated again for the chemo in her spine (LP), and David said it was the best one yet. She didn't wake up crying, and the anesthesiologist said she did great the whole time. That was good news. She will get a break from the LP's next week, and we won't even have to go to clinic. So we go back in 2 weeks and begin the new phase, i believe! Interim Maintenance is next. It seems like she is breezing through Consolidation so far, 2 more weeks!
As for the rest of us, Jade perked up a little today with the antibiotic started, and I am running a fever but trying to pretend I'm not sick. I don't want to be out for days, so I am trying to fake my body out. It's working a little bit, but I may have to enlist some of the other family members to do some of the cleaning today. Especially with her ANC so low, I need the house germ free. Good luck with that right?
Quick update - I went to my Ob/gyn appt today, and found out we are having another GIRL!! David was not one bit surprised, but I really thought this one would be a boy. I screamed and laughed really loud when the doc told us, all the nurses outside said they heard all the commotion from inside our room. It was funny. So we will have no boys, since this is our last one. JD - I would love to know the probability of having 4 girls!!
Then it was off to the doctor for Jade, she has been so, so sick this week, and we were getting nervous, then her ear started hurting this morning/middle of the night. So I took her in and got some antibiotics for an ear infection, BUT the pediatrician wants her to go to an ear specialist to get her ears cleaned out, he said her ears for some reason produce a lot of wax from the inside, and so he wants them to check her out. I am so sick of doctors!!! No offense to any of you wonderful people in the medical profession, but we have had our fill!!
Tomorrow will be our trip to the hospital for clinic and another LP for chemo in her spine. I'm starting to get sick, so if I have the same virus, I should have a sore throat for a couple of days then be totally out of it by Wednesday or so. I am hoping I don't get it as bad as the other kids. So far Brinley hasn't caught it, but I don't know how long we can keep it away from her, especially if I have it! It's not like David can take a week off to keep me away from her! So I'm washing my hands like crazy and trying to wear a mask as much as I can around the house. It is such a nasty virus!
Brinley is walking better. She's a little unsteady and nervous, but she is little by little converting back to walking. She's doing great!
Life is good! We are happy!
I just have to give credit to all the cancer kids out there. I have learned so much in a world I barely even knew existed. If you are experiencing this for the first time with us (I post often, probably too often :) so you probably feel like you know a lot more about it too) I thought I would share some of the things that these kids go through, because they go through so much and people have no idea. I joined an online group of parents all with children that have ALL, and I have learned so much from their experiences. They are amazing people, most of them have suffered more than we have (they have been at it much longer) and the children have suffered so much more than Brinley. I know of a girl who was hospitalized for weeks with sores in her mouth, through her throat, to her asophagus, through her intestines all the way to her rectum. Her body could not heal them because she had no white blood cells, so she had to lay there with a morphine drip for weeks, in severe pain, waiting for her body to build back up the white blood cells so she could heal. And then start chemo again. She was about 3. I know of a girl who went through chemo at 2 years old, only to relapse, and go through it again at 7. All of the torture, again, only much more agressive. And she is smiling in her pictures. I know of a 9-year-old boy who was beginning induction, ready for the fight, got diahhrea, went to the hospital, and did not make it. There is a boy who is nearing the end of his treatment and is suffering with sores between all of his fingers, under his fingernails, and cannot physically keep up with the other kids his age because of all the chemo.
At clinic they had a wish wall up, where the kids could put down a wish. One of them said "I wish there was no cancer", another read "I wish I didn't have stupid cancer". It is heartbreaking to be this close to so many children in pain, emotionally, physically. How did I never see this before? Sure, I knew it was out there, and my heart went out to those who suffered from it, but it is so different being surrounded by it. Did anyone else watch Extreme Home Makeover yesterday? They rebuilt the house of a boy named Job who got leukemia when he was 4, with a 10% chance of survival. He survived, but because of the chemo, ended up with lung problems, being on a ventilator for a year. Then he had to have a double lung transplant, and is still suffering in a wheelchair, taking many meds that make his face and body swell up (looked to me like those awful steroids!). David and I had tears in our eyes the whole show (okay, so David had tears in his eyes, and I bawled the whole time!) It was soooo sad and inspirational at the same time. This little 10-year-old boy had suffered SO MUCH in his short life. You could see how sick he was. His parents were amazing. His mom said something that I have absolutely discovered to be true. She said that one good thing that has come of this is that she has learned to appreciate the things that everyone else takes for granted. She said the heard her kids up late giggling one night and just laid in bed and cried, loving every second of it. His Dad said he wishes he could just take the look on his son's face when he saw his room and bottle it up, then open it whenever he needed to see his smile. Let me know if anyone else saw it. It was great.
All these kids suffering, in pain, not living normal lives. I just wanted to recognize our cancer kids and give them the credit they deserve, for having to go through so much and such a young age. They are amazing and we can all learn something from these tough little kids.
I'll post an update later today after all of our doc appts, we have a couple today, so check back later!
Medicine update - I called the clinic and told them I could not give her that medicine. The doctor I spoke with said that it was the only antibiotic they could give her, and he agreed it is disgusting, but that they had a big meeting about her and all determined that she had to have the very strongest antibiotic, and there was no other option. I don't think so! I asked him if they had it in IV form, I mean, she has that annoying central line, we might as well take advantage of it!! He sounded a little annoyed, but said he would call our normal onc and ask. He called me back a few minutes later and said he had ordered the IV form and it would be delivered sometime that day. Yay! I love Dr. Druzgal, she makes things as easy as possible for us! I couldn't do that to her 3x a day, I just knew there had to be another way. So now we are giving it to her through her IV, much easier.
Jade is still very sick, but so far we have all managed to stay away from it. I had to go to the doctor today, (I think we have seen 6 doctors this week!) because I'm having some weird heart palpitations. I called my ob/gyn and the nurse had me take my HR during one of the "episodes". When I called her back she said I needed to see someone today, preferrably a family doctor, since it really wasn't an "emergency", but if I couldn't find one I would have to go to the ER. I was NOT going to the ER for "heart flutterings", I would be last on the list there! So I found a doc on our insurance. He is referring me to a cardiologist and I just have to go pick up a monitor to stick on my chest over the weekend so they can see if anything is going on. It kind of feels like my heart keeps fluttering and my HR goes up, and I get a little short of breath. Surely it's nothing major, it doesn't hurt at all, but I just want to be safe since I'm pregnant and all. Maybe just stress.
We are having a REALLY hard time getting Brinley to take her meds. They prescribed a really strong antibiotic for this pnemonia thing, and it is DISGUSTING! It smells like poop, and David tasted it last night, and said it tastes like poop too (don't ask me when he's eaten poop, but if you know David and the kind of kid he was.....lol). So she absolutely REFUSES to swallow it. We're supposed to give it to her 3x a day, 5ml's. That is a lot. I can't make her eat something that tastes so disgusting, she almost throws up every time. I've tried masking it in juice, soda, raspberry syrup, etc, but it's too much medicine to mask the taste. She catches on every time. Last night, between the 3 medicines we had to shove down her throat, her shirt was soaked from spitting it out and we finally gave up on the antibiotic. The septra (the other antibiotic she has to take) we had to redose about 3 times before we could get her to swallow it. I called the clinic and left an msg for someone to give her something else, but they haven't called back. Lets hope there is something else she can take, because there is NO WAY you can make a 2 year old eat something like that. I feel so bad shoving gross stuff down her throat and making her almost throw up every time. We ARE accepting advice on this one......we'll try anything......
As for the other kiddos, Taylor is still sick w/fever and Jade, who was not so bad, woke up last night with 103 fever, and has been running a fever all day. So this a very yucky virus that stays for a long time. We're still trying to keep it away from Brinley, and so far no fever since the hospital. Let's hope it stays that way.
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