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Day 785

5/6/2015

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Please say lots of prayers today for Dariana! I will update later...


Thank you for all of your prayers today! It has definitely helped. Dariana has been having a really tough time this time. Physically she is exhausted, she has not felt good since April 10 when things got really bad. Some days she gets some relief but most days she is just feeling horrible. This is taking a toll on her mentally and emotionally. Clinic this past Monday was rough. We had some realistic tough conversations with the doctor. This conversation was initiated by Dariana and she wishes for me not to share the details which I will respect and not share. However it's a conversation that a 17 year old she not be having. My heart broke for her and I literally could not stop crying. The past 3 days have been extremely rough for her. She is a very motivated young lady and nothing will stop from taking care of her responsibilities. As sick as she has been she is concerned with her schoolwork. She got so overwhelmed today and so emotional. I told her Whatever I can control I will make sure she doesn't have to worry about, so my sister came over and we got 80% of her school work completed. She calmed down but is still very worried about everything from normal teenage stuff to things she shouldn't even be batting an eye about. Her doctor suggested to go down and her be admitted to try iv meds and maybe she would get some relief quicker but Dariana said absolutely not she knows her body and she knows when she can't do anymore to try to make herself feel better and if she needed to go to the hospital. So we are going to give it a day or two and see how she is doing. This is breaking my heart and I don't know how much longer I can stay strong. I lost my faith for a little bit but I know God doesn't put this upon children, I know he his the healer. I believe he will heal her and I believe in miracles. Please continue to storm the heavens with prayer for my girl. Hope, Faith and Encouragement.
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Day 782

5/3/2015

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I'm sorry it's been a while since I have posted. It's been a long two weeks for my girl. We are trying to get her straightened out with her pain meds and her nausea meds. If she gets the slightest headache she starts vomiting. If she eats something it usually winds up making her sick because her taste has changed. This actually began prior to chemo and then chemo just made it more intense. She had to have a hearing test because they will be monitoring for hearing due the cochlear nerve being most involved in the tumor and the radiation. While we were there I asked the doctor about the taste and he said it's probably all of the meds she is on. Most of the meds she is taking is giving her dry mouth and thankfully this is an easy fix, she will just rinse and brush with biotene. Hopefully it works. Her meds were changed last week because the Ativan and hydroxyzine combined with the oxycodone just kept her fatigued and she couldn't get out of bed. The new meds were working pretty good up until a day or so ago. They are extended release so they should last longer then they are. I don't know if it's because she is now off the steroids and that was helping a lot more than we thought. I just feel like we are going in circles and no matter what we do she will be so sedated from all the meds. I can't stand seeing her like this.. She has laughed maybe a handful of times and anyone who knows Dariana she laughs and everyone can hear it. I miss it. I am physically, mentally and emotionally tired and I am tired of being tired. If we could just get through these rough days sooner than later I would be okay. We go to clinic again tomorrow and Tuesday she has her EKG and echocardiogram. Hoping this weeks is better than the past two.
Hope, Faith and Encouragement!
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Day 771

4/22/2015

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First night of chemo was rough. She was up vomiting throughout the night. Second night much better. She got through the night without any vomiting. She does have constant nausea but we have worked out a schedule that she is getting something every three hours. For the most part it helps. She is so hungry and yet is having s hard time eating because everything tastes horrible. This poor kid can't catch a break. On a good note, her facial symptoms have improved. She barely has any numbness and her eye is back to normal. The oncology radiation doc is very happy to hear this. She did not expect any improvement this early. I hate that I have to administer the chemo to her, I have to keep telling myself this is what's going to make her better, God willingly. It's hard to believe that giving her poison will make her better. Praying she continues to have improvements and this will be the last time we deal with this nasty disease. I know she will make a difference in this world. I pray that God gives her the opportunity to make a difference. Thank you for all of your support and prayers. You truly help me through each day knowing that we have so many amazing people praying for Dariana. Hope, Faith and Encouragement!
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Day 768

4/19/2015

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It has nice being home. She has had some improvement in her facial features as far as her eye drooping and the numbness. It has had a little improvement so praying that these are all good signs that the radiation is already beginning to work. They said we should see improvement, God willingly, within a month or so. She has been slowly feeling better. Each day it seems she feels a little better. I am so grateful for the slightest improvement she feels. It was a busy weekend as far as all of her friend coming to visit her. It's so comforting to know she has so many amazing people here to support her. Her friends come and lay with her and wait on her and comfort her. The Arlington Lacrosse team, who adopted another warrior Angelo, has been showing their support to Dariana this past weekend. There are a few pictures below. Tonight one of her friends stopped by with a big gift basket from the lacrosse team and the money they raised selling T-shirts and bracelets. What amazed me the most was that people from the opposing team even came and bought shirts and bracelets to support Dariana. I want to thank the Arlington Lacrosse team for everything they did for Dariana and all of her friends that stood out there getting more supporters for Dariana. This time around seems even harder to deal with emotionally than it was the first time. It helps tremendously to have such amazing people all over reaching out to support us. You just can imagine how much it means to us. Tomorrow she starts her chemo. We will go down to Columbia for IV chemo and then tomorrow night she will start the oral pills for 5 days. I am praying she has no type of reaction to these pills and everything goes smoothly. Thank you again for all of your support, prayers and thoughts. We cannot express how grateful we are for all of you!!! I will continue to update you through the week. Hope, Faith and Encouragement!
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Day 766

4/17/2015

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We are on our way home
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Day 765

4/16/2015

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My baby is in a lot of pain. She wanted so badly to go home but she is in too much pain. We are hoping between the pain medicine and the steroids that by morning she will have relief. She pulls through anything so for her not to argue to stay overnight she has to be in a lot of pain. Then the pain brings on the nausea. It's a vicious cycle. She is resting comfortably right now and praying it stays that way through the night. The pneumothorax has improved. She will have one more X-ray in the morning to confirm it is continuing to improve and is that's the case they will let her go home.please continue to pray. I hate seeing her in pain. Thank you!! Hope, Faith and Encouragement!
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Day 765

4/16/2015

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Today is radiation. She got transferred down to the gamma knife "suite", they try to make it sound so nice. Dr. Anderson, the neurosurgeon, came to put on her "crown", this heavy titanium cage-like thing that screwed ever so lightly in to her forehead and the back of head. She has now been carrying that around since 8:00 this morning. She then went for her MRI and went on to sit for roughly 3-4 hours, mind you with her "crown", while they planned her radiation. She has been in there receiving radiation for about 1 1/2, she has about 20 more minutes to go. They will then remove her "crown" and she will have four little band aids on the spots where the screws are and they will wrap her head in gauze. So I was told, this sounds a lot worse then it is. Really???? How does this sound.... A 17 year old girl who just got her life back after 52 rounds of radiation and 14 cycles of chemotherapy, after losing her hair, missing out on some stuff she wanted to do, after losing people who she thought were friends, after months in the hospital, multiple surgeries and then finally being told she has ovarian failure and most likely will never have kids and then for days later being told her CANCER is back and in the brain none the less and its inoperable. Well to me it is a hell of lot worse then it sounds! I am angry and maybe she was trying to keep mom calm. But I am not inside i want to jump out and hit someone or something. This is not fair, yes I'm as positive as I can be but I mad that she has to go through this again. The chemos aren't as hasty as the first, is that good or bad?, well survey is optimal but gamma knife is great too?, it's funny how words are said and taken back... I am numb as to my emotion on the outside, but my insides are just screaming. I'm ranting and I'm sorry but this is just too overwhelming for me today! Thank you as always for your prayers and support. She will hopefully be going home today. Hope, Faith and Encouragement!
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Day 764

4/15/2015

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Update: it has been a very long day but it has been good news overall. They removed the ovary and looking at it it looks normal. They will do further testing to confirm but for the most part they feel there is no abnormality there. Bone marrow results should be in by Friday, but again they are not too concerned because the lumbar results have come back negative. Port is in place but she has developed pneumothorax. This caused her to stay in PACU until 4:00 for monitoring. The doc was not sure if it would be necessary to have to use a chest tube or not. She is on 02 which seems to be helping her slowly so they are going to continue to monitor with 02 and do a chest X-ray in the morning to see if there is any progress. Tomorrow is another long day starting around 5:45am for radiation. She will first have a MRI, then planning of radiation and then finally radiation. In all it can take anywhere from 4-7 hours. But most importantly she tolerated everything like trooper as always. She is very sleepy and sore. Hopefully we can get through tomorrow without any hiccups and be on our way home by Friday. It it were up to her she would be out of here tomorrow but I think with two long days and 4 procedure one more day could only help. Thank you for your prayers. As always we could not do this without all of your support, thought and prayers!! Hope, Faith and Encouragement!
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Day 764

4/15/2015

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Just wanted to let everyone know Dariana is out of surgery. So far everything looks good and she is resting. Keeping her comfortable. Will update more later. Thank you for your prayers. God is listening!!
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Day 764

4/15/2015

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Getting prepped for surgery.... Please pray for no complications and no disease in the ovary.... Thank you!
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