I just talked to Dr. Ryan (the pediatrician) and he said the results came back and it "looks like" Jade has recently or currently has EBV, or Mono, which would be a viral infection. As I was jumping for joy, he brought me back down to earth to say that he is still not completely satisfied, and wants us to continue with the bone scan and still talk with Dr. Lemons (our oncologist) next week when we get the results. But for right now, I am going to assume it is mono and rest easy this weekend until Monday. At least the evidence points to that. He said her IgM levels were elevated, I need to look that up because I don't really know what that means, but he said it points to the EBV virus. I was under the impression that this test would give us a definite answer as to whether or not she has the virus, but he didn't sound 100% positive. We know there is one more test to clear, the bone scan, but we are feeling much more confident than we did that this will all just be viral. So until next week, let's all figure this is going in a good direction!!! Thank goodness.....sigh.
I don't have much to say today, except that Jade is the same, still has the fever and bone pain, and we didn't get any of the blood results to find out if she has something viral or not. They are testing for mono and CMV. Looking at those symptoms, I don't believe it is either of them, but I would jump for joy if I was wrong. We should hopefully have those results tomorrow sometime. So look for a good news post! I am trying to distract myself, I can't just sit and think about it or I will put myself into a panic again. I think I almost had a panic attack when our pediatrician said he was in touch with our oncologist, I couldn't breathe and my heart was racing. Today was much better than yesterday mentally. I just decided there is nothing I can do until we know, so we will just live our lives normal. If this is something serious it will eventually rear it's ugly head. We'll find it. So as a distraction we went to my sister's today. Brinley's counts are too low to go do much of anything, so we spent the day there. It was nice and distracting. My doctor's office only got one call from me today instead of 5 :) Lucky them. I'll post more tomorrow. Thanks for checking in! And by the way, Brinley is doing great, the 3 week break from any chemo has been nice. I just wish she could have started maintenance this week, it sure would have been better timing for the baby coming, but oh well. Things can't be too perfect right?
This has been a yucky day. Here's where we are - Jade is still running her fever - 3 days into the antibiotics for the ear infection. That was disappointing, but I know antibiotics don't do anything for viral, so I am still hopeful it is viral. Dr. Ryan (her pediatrician) finally called and said he and Dr. Lemons consulted and decided to rule out viral and get the bone scan before we jump onto the bone marrow test, especially since the smear pointed to viral. So he ordered some bloodwork to test for a few viral infection possibilities that would last this long. Then the nurse called me and said they could not schedule the bone scan until the 19th!! Are you kidding me! I can't wait until the 19th! I am about to pop, and we need this figured out now! I called the oncologist in tears, I was so frustrated. This is too stressful to wait a full week. The problem is they have to wait for a full sedation team because you have to lay still for a while for the test. So we worked out to try it on Monday without the sedation, Jade is not high strung and he said it is not as scary as an MRI, many kids are just fine without it. If it happens to not work, we will keep our Thursday appt and do it with sedation. So we will have to wait for answers, maybe in the meantime we will get the blood results and find out it is viral, at least that would explain something.
In the midst of all the phone calls today, clinic called and Brinley didn't make counts to start chemo tomorrow. Her ANC is still only 400 and she needs to be at 700. I just started crying again. I wanted so bad to start maintenance tomorrow, so we could hopefully get the 5 day steroid pulse behind us before the baby comes. Now we have to wait until next week, one week from my due date. I know it is for the best, but I am so tired of waiting. Waiting for everything. Patience is so hard to learn. You would think I would have learned it by now. I will update when I know something, but I don't know when that will be. Please keep us in your prayers.
I know many of our family and friends are waiting for updates, I just don't have a whole lot yet to update. It is all up in the air. I will give you what I have...
I called and spoke with Dr. Lemons this morning and he said they did a blood smear and they did not see any signs of leukemia. That can be a sigh of relief to many others, but it does not help me much because there was also no evidence in Brinley's smear. It was in her marrow only. But I will take it for what it is, sor far there is NO sign of leukemia. He said that he will recommend the bone scan to our pediatrician because of the irregularities and several other tests I have never heard of. I called the peditrician and the nurse said that she knows he has spoken w/Dr. Lemons already and is waiting until he can sit down and call so we can talk in detail. Probably on his lunch. I can understand that, I don't want to feel rushed when he calls, so I'm just waiting. I'll ask him more questions about whatever tests he wants to run. I have a great deal of confidence in him and know he is very thorough. That's all I have, I wish it was more. Not knowing is torture.
Our pediatrician called this afternoon on Jade and the tests came back. There are three concerns, some bone irregularities on her hands and feet, a low white blood count, and the 2 month fever. Separate they can all be explained and discounted, but together it needs to be looked into. He felt it necessary to get in touch with our oncologist because he doesn't know what to make of it all. Leukemia is in the running for a possibility. Tomorrow we should hear more from them, tonight we are praying like crazy that it is a coincidence and she has some weird viral thing that is making her counts low and a long fever and she happens to have some bone irregularities (that CAN be normal). The fact that Brinley also had a bone "irregularity" right before her diagnosis is making this very hard to discount. She will most likely get a bone density scan tomorrow, but the pediatrician did not want to get into it too much so I don't really know what that will tell. He said the oncologist will be talking to the radiologist in the morning and someone will be calling us. I hope it will happen early, I know Dr. Lemons is a very busy man, he is the head oncologist and is wonderful, but I can't wait and not know for much longer. This is insane, I cannot fathom the possibility.
Well, I was asked about the other two kiddos yesterday, so I will give you an update on how they are doing!!
Taylor is really doing great. With no hospital drama and things calm around the house, we have been able to spend a lot of time with her. It's so nice to feel like normal parents who give their kids equal attention! She just got her report card and got straight A's! She was quite proud of herself for bringing up the one class keeping her from straight A's. She is so excited to start junior high, but that excitement stops with her. I'm not so thrilled about it. She's getting so old so fast. Her passion is still soccer and she can't wait until she can start playing in regular outdoor season again. She just yesterday discovered that she would like to learn about photography and was home sick from school with a cold, so she spent the entire day snapping pics of all of us. She actually got some pretty good ones, maybe I'll post a couple! It was fun to watch her be creative with different poses. I might see if they have a class at the rec center or something. I feel so blessed to have her. She has worked extra hard to be pleasant, and we all remember when our hormones were changing, that was not an easy feat. She is patient and loving to her sisters and is growing into a lovely young lady. It's fun to watch her change. And sad :(
Jade is on our worry list right now. I haven't mentioned it much because I am trying my very hardest to not overreact, but she has been not right for 2 months now. She has had a nonstop low fever the entire time and we have been in and out of the doctors trying to figure this out. It is a very long story, but the short version is she is either catching one virus after another that has her constantly with a fever, or something that is more serious. Yesterday she had an ear infection when we went in, and I breathed a huge sigh of relief, that would at least explain the fever for the moment. But her ears have been clear the other 3 times we have been during the fevers. Sooooo, basically, the pediatrician (LOVE HIM) is checking everything. He said it could very well be that she just happens to have caught one thing after another for 2 months, but he is still a bit worried. He wants answers almost as bad a we do. So David was down at Primary's with Jade today getting several tests done. He ordered a whole skeletal x-ray (she says her bones hurt, and he remembers very well me coming in with Brinley a few times right before diagnosis with limping, so he's not taking any chances there!), a chest x-ray, and more blood work. She is on an antibiotic now and I am supposed to track her temp 2-3 times a day to see if it goes away on the antibiotic. I hope to know more the next couple days, in the meantime I will not tell you where our minds are wandering on this one, but please pray it is just a string of viruses. If her fever does not go away with the antibiotics, our doc will refer us to infectious disease at the hospital to run the many tests that they would run. See what I'm saying? The mind goes a little crazy once you've hit the medical lottery once. Otherwise, she is okay, still struggling emotionally. I think this has been very hard on her. I always thought of myself as a good mother that generally knew how to handle things, but this is a whole new ballgame for me, and I am having a hard time balancing discipline with compassion for what she is feeling. At times when she is out of control, if I just grab her and hug her, she will melt and just cry in my arms. It breaks my heart. I love my Jade, she is so sensitive and tender and sweet. And stubborn. Please pray for David and I that we will know how to deal with this the best way possible for her. She is excited to start kindergarten and loves her pre-school class now. I wish we could take her teacher with us, she is amazing. I want to sign her up for something else fun, but it is so hard to know when it is a good time to busy up again. Things are so up in the air right now with a baby coming in a couple weeks and Brinley just starting maintenance. I don't want to overbook us just because things have been well for a few weeks. But Taylor is in several things, so it is only fair for Jade to get some stuff going too! I just don't have to stay with Taylor at her activities, it makes it much easier to just drop off when Brinley can't be around others. One cute thing about Jade, she is so excited for this baby. She asks every day if the baby is coming out today. She's trying to understand how it all works, it's interesting trying to explain childbirth to a 4 year old! She walks around the house with a baby tucked under her shirt saying "my baby is coming out! My baby is coming out!" Very cute. I'm hoping this will be good therapy for her, she can be my big helper.
There you have it, an update on my other two sweeties! I'll post some picture later when my computer savvy husband gets home!
On 9/3/08 our worlds changed forever. It has been six months since two doctors looked down at me lying next to my sleeping child and told me she had cancer. I can't believe it has been six months. I remember looking at her peaceful face, finally asleep for a moment after enduring so much pain, and trying unsuccessfully to hold in my sobs until after the doctors left. It is hard to think about that week, or month, without all of the feelings rushing back to me. The way she frowned all day. The way my heart literally hurt for the pain she was enduring. The way she screamed when they couldn't find the vein to draw blood, or get in an IV. The way she smelled those few days after getting her first dose of chemo. Seeing a tube sticking out of her chest for the first time and having to sit down and take deep breaths. Crying with my husband. Crying by myself in the bed at the hospital. As I read back on the blog I realize I didn't write much of my feelings, it was very much matter of fact during that painful week. Truth be told, I don't know how we survived that first month. It was so emotional. I remember thinking and praying to the Lord to get us through the first six months. He has answered that prayer. We are here. We survived it. It was a complete roller coaster, full of joy one moment, and misery the next. We are happy. We have learned some things, and know we have more to learn.
If Brinley makes counts, she will start Long Term Manitenance this week. Brinley is winning the fight. Brinley is winning!!! The cancer is not beating her! And I don't mean this only in the literal sense. She is happy. She is pretty healthy. She smiles and plays and acts like a 2 year old. She is living life and cancer has not conquered her. I am so proud of her! The war that is being fought inside her little body is not getting the best of her! Now she will be down to once a month clinic visits for chemo, a LP (chemo in her spine) every 3 months and nightly chemo given orally. This will be for a little less than 2 years. We can do this. We can do two years of this, and my Brinley will beat this monster. I have had a lot of different emotions this last six months. For those of you who have followed for a while, you probably thought I had a double personality at times....it has been an emotionally draining journey. But I have no doubt the day will come when I will be grateful for it. The day will arrive that I will honestly say I would not change anything. Not there yet, it's still to painful to watch my kids suffer in different ways. I believe it is a process. A learning process. The day will come that I will look at this through different eyes than I have now. I have a great deal of faith that that day will arrive for me. I look forward to it. I AM grateful that we have a Father in Heaven that supports us in our trials. Oh, the nights I have crawled into bed and cried for hours not knowing how I would wake up and get through another day! And then I woke up the next day and did it. I know that was divine intervention. I could not have done that on my own. So I thank the Lord for carrying me when I couldn't pick myself up. Although I'm not ready to jump on the "grateful for this trial" train yet, I will say that I have never been mad at God for it. I don't believe the Lord sends, or allows, any trial to come to us that we can't handle. I have learned a great deal about what I can handle. I am grateful that when this storm came to us, we had a foundation of faith to hold firm to. It was built during easier times and has carried us through this difficult one, and will continue to do so for many more to come. My testimony of the atonement and the Gospel have only deepened through this and for THAT I am grateful. But how I miss our normal lives! I miss Brinley's hair! I miss her chubby legs! I miss my medical innocence, not knowing what most of the words that doctors spoke meant! I miss the days of thinking nothing would ever happen to anyone I loved! I miss the days of not seeing so many children suffer! Someone from my online group of cancer mom's described it perfectly. She said during the first month after diagnosis you are pushed of a cliff and free falling, everything is happening so fast and you don't have control of your life. Then you land and you spend your time trying to climb back up that impossible cliff to where you were before, only to realize you can't ever get there. Finally you brush yourself off, and learn to live and be happy with your new path, realizing you can never get back to the one you had. But that's okay, because the new path has some good stuff too. So although sometimes I covet the normal life, I can be just as happy with this one too, it's just different. Happy, but different.
And I love all of you who have supported us through this!!! I have been told that we would see who our true friends are, and that has been true, we have so many wonderful friends and family who have stuck with us and I have no doubt will continue to lift us up through this journey. I look forward to the day that I can be the lifter for all of you, instead of the lifted. You are all angels to me. Two years to go!
Brinley's Cancer Fighting Friends
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