Written by Haley Lane
I spend about 80% of my life in bed these days. Yes it has been great for my figure--if you like that soft round look. The word you hear out of Ari's mouth the most is, "Bed." Most the time she is yelling it at me. Her facial expressions get pretty funny. I feel like I'm the kid and she is the parent yelling at me to, "Get back in bed young lady!) My arm is her pillow and she can almost not sleep without it. She has been sick, so the other day I let her sleep as long as she needed. She slept for 15 hours straight.
I used to be frustrated at not being able to get anything done. Not anymore. I feel that I treasure every moment holding her and loving on her. My perspective changed one day after complaining to Travis. I told him, "I have 15 seconds of time what should I do with it?"
He replied,"Hold me." He told me,"Just think if she only lives a month or so you will be so glad for the time together."
Leave it to him to change my life. He teaches me every day. The biggest thought I walked away with after our conversation was, "I don't want to have any regrets!" Not just with Ari but with all my kids and Travis. You never know when your time is up--or theirs.
So I now have to priorities a lot. Laying in bed with Ari is at the top of my list.
Monday, December 21, 2009
Tuesday, November 17, 2009
Ari looks so much better
Written by Haley LaneAri's Primary Children's appointment always takes about 8 hours. Amber had the day off so she came to visit with us. It was so fun to see her. It was actually a fun appointment. I was so hopeful that we would not need blood this time. She gets quite a bit of energy for a few
days after getting blood.
The clinic gave her this hat. She looks so cute.
As soon as she got in the car she was out. It had been quite a long day.
Sunday, November 15, 2009
Ari is doing well
Written by Elizabeth Lane HibbardI haven't had much to put on the blog, as Ari has been receiving chemo treatments and seems to be responding well so far. I am so glad that we have good news to share. She appears to be a healthy, happy little girl unless you look closely at her hair that has started falling out. Good thing she has an Aunt Kim that makes adorable little girls hats from her Baby Bling line. Ari still wants to have her Mama close by, and has had to learn to crawl again. Her body atrophied so much, that she lost the ability to walk. It's probably quite frustrating to her, as her mind is still sharp and she knows that she could do that once. However, she seems to be getting better. Haley is so diligent on keeping up on her medications, playing with her, and still being such a great Mom to all of her children. I don't know how she manages to get it all done. As always, thanks for all of the prayers.
Thursday, October 22, 2009
As If Haley doesn't have enough to do...
She put together a surprise birthday party for me last night. It was so awesome. Travis and Haley's kids showered me with confetti and yelled surprise as I walked in the door. The whole house was decorated. She even had her video camera out.
I am truly amazed at how considerate, thoughtful, and serving they are to others even when they are going through so much. Shortly after the party, they had to take Ari to the hospital in St. George to have her pick line flushed. It wasn't an emergency or anything, but it had to be done. A few hours later they returned with food for their kids. They are taking Ari to Primary Children's for a chemo treatment on Friday.
I am truly amazed at how considerate, thoughtful, and serving they are to others even when they are going through so much. Shortly after the party, they had to take Ari to the hospital in St. George to have her pick line flushed. It wasn't an emergency or anything, but it had to be done. A few hours later they returned with food for their kids. They are taking Ari to Primary Children's for a chemo treatment on Friday.
Monday, October 19, 2009
Still in the hospital
Written by Elizabeth (Lane) Hibbard
I spoke with Travis this evening. He said that everything is still the same: still in the hospital, still running tests, and still having little ups and downs. She does have a lesion on her brain. They are trying to figure out if any of the treatment has stopped the growth. It's a "wait and see" game.
I spoke with Travis this evening. He said that everything is still the same: still in the hospital, still running tests, and still having little ups and downs. She does have a lesion on her brain. They are trying to figure out if any of the treatment has stopped the growth. It's a "wait and see" game.
Sunday, October 18, 2009
Thanks for all the comments
I just want to thank everyone for the comments they have posted on this blog, on facebook, on different family members blogs, and different facebook accounts. I read them all--and I know Travis and Haley are reading them too. It's just that there's not a lot to say to respond, except thanks. So, even though they are sometimes unanswered they still mean alot. Especially Felicia, who's daughter also suffered with LCH. She has written so many heartfelt comments on Travis' facebook. I truly appreciate her support. If anyone knows this kind of trial, it's someone who has experienced it firsthand. A sincere thanks to everyone.
Saturday, October 17, 2009
Words from Travis
By Travis Lane
We all know Ari’s sickness has been a roller coaster of ups and downs; good and bad. Good health for a couple of days and then unexpected and devastating. Even to the point of near-death as her body has collapsed from the disease. Most of it has had to do with her condition of Diabetes Insipidus, which has caused her sodium levels to rise and fall. She has become extremely dehydrated and in a matter of minutes she can collapse, have convulsions, and minor comas completely take over her physical body.
She has also experienced a large amount of pain over this last week. Pain, that oxycodine and morphine could not alleviate. The doctors don’t know exactly where the pain came from or if it will return. Her blood levels have also been very weak, requiring blood transfusions. The most consistent symptom has been a fever on a daily basis. Sometimes she has two or three fevers a day, but without fail, at least one a day. The hope is that she has some kind of viral infection that is causing these symptoms.
However, they have run test after test this week, and are not finding any type of virus or infection. As a result, the doctors believe it is the LCH that is causing her symptoms. It is very important we find out. According to the Oncology doctor, if it is the LCH we must aggressively change what we are doing because it isn’t enough. If we don’t, she may rapidly decline. Similar case studies in the past have not been favorable. (You can translate that for yourself.)
Unfortunately, if it is the LCH that is causing all of these symptoms including: fever and pain. Then, the road ahead will be very, very challenging. They are going to start all of the tests, surgeries, biopsies, cat scans, and x-rays, etc. There are many and they are painful and discomforting. Mom, Jaymi, Lori, Jake, and Amber have witnessed and helped with the tests firsthand.
If it is LCH, that is causing it, the therapy will be much more aggressive. The chemo will be more potent, causing riskier and more painful side effects. She is already a radiation bomb ready to go off! According to the doctor, because she is in her sixth week of chemo treatment, she should not be experiencing these symptoms if she is in remission. Unfortunately, with LCH, if a patient doesn’t enter soon, the chances of survival are less likely.
On the hand, we are hoping that is a virus or an infection. If it is, we get to continue with antibiotics and intensive care and she will be fine—figuratively speaking. According to science and medicine, in my opinion, the diagnosis is pointing to LCH. But that is not what we want. Haley and I are going to start a fast. We are not sure what to fast for. My first thought was to fast that she has an infection or a virus. (I never thought I would fast for that reason.)
If anyone has any inspiration intuition, please share. I also think it would be great to fast for Amber and her situation. No, not her marriage to Jake . She has been afflicted with passing kidney stones and it is extremely painful.
This situation reminds me of tough man tournaments. You know you have to step into the ring and fight, but you don’t know who you are going to fight. It could be the 6’ 6” 250 pounder with years of fighting, or it could be the 150 pounder who’s friends talked him into entering the competition. So yes, I am fearful of who our opponent is. I feel like I am sitting in the locker room waiting for my opponents name to be drawn. I guess this is a moment in life you hope you have trained well for. As I’m sitting here typing this into my phone, I am wondering if I am prepared to fight the 6’ 6” opponent. Is my faith, patience, charity, belief, and hope sufficient? Have I honored my Priesthood and am I worthy to commune on a Divine level? What do I know about the Atonement? Can I access it on a level sufficient to help Arianna bear what may be ahead of her? Is my relationship with God and Christ enough to call upon the powers of Heaven for comfort and support for Arianna to endure what challenge may come.
However, my mind cannot rest from the thought of what if Arianna does not make it? Was I as her father prepared spiritually, physically, emotionally, and intellectually enough to do all I could to help her? And, did I give her the love and care that she needed while she lived her short two years on this earth? I guess those are good questions regardless Arianna’s situation. Questions I should ask myself about Haley, Kaley, Taylor, and Laney. And, all of the people I love.
We all know Ari’s sickness has been a roller coaster of ups and downs; good and bad. Good health for a couple of days and then unexpected and devastating. Even to the point of near-death as her body has collapsed from the disease. Most of it has had to do with her condition of Diabetes Insipidus, which has caused her sodium levels to rise and fall. She has become extremely dehydrated and in a matter of minutes she can collapse, have convulsions, and minor comas completely take over her physical body.
She has also experienced a large amount of pain over this last week. Pain, that oxycodine and morphine could not alleviate. The doctors don’t know exactly where the pain came from or if it will return. Her blood levels have also been very weak, requiring blood transfusions. The most consistent symptom has been a fever on a daily basis. Sometimes she has two or three fevers a day, but without fail, at least one a day. The hope is that she has some kind of viral infection that is causing these symptoms.
However, they have run test after test this week, and are not finding any type of virus or infection. As a result, the doctors believe it is the LCH that is causing her symptoms. It is very important we find out. According to the Oncology doctor, if it is the LCH we must aggressively change what we are doing because it isn’t enough. If we don’t, she may rapidly decline. Similar case studies in the past have not been favorable. (You can translate that for yourself.)
Unfortunately, if it is the LCH that is causing all of these symptoms including: fever and pain. Then, the road ahead will be very, very challenging. They are going to start all of the tests, surgeries, biopsies, cat scans, and x-rays, etc. There are many and they are painful and discomforting. Mom, Jaymi, Lori, Jake, and Amber have witnessed and helped with the tests firsthand.
If it is LCH, that is causing it, the therapy will be much more aggressive. The chemo will be more potent, causing riskier and more painful side effects. She is already a radiation bomb ready to go off! According to the doctor, because she is in her sixth week of chemo treatment, she should not be experiencing these symptoms if she is in remission. Unfortunately, with LCH, if a patient doesn’t enter soon, the chances of survival are less likely.
On the hand, we are hoping that is a virus or an infection. If it is, we get to continue with antibiotics and intensive care and she will be fine—figuratively speaking. According to science and medicine, in my opinion, the diagnosis is pointing to LCH. But that is not what we want. Haley and I are going to start a fast. We are not sure what to fast for. My first thought was to fast that she has an infection or a virus. (I never thought I would fast for that reason.)
If anyone has any inspiration intuition, please share. I also think it would be great to fast for Amber and her situation. No, not her marriage to Jake . She has been afflicted with passing kidney stones and it is extremely painful.
This situation reminds me of tough man tournaments. You know you have to step into the ring and fight, but you don’t know who you are going to fight. It could be the 6’ 6” 250 pounder with years of fighting, or it could be the 150 pounder who’s friends talked him into entering the competition. So yes, I am fearful of who our opponent is. I feel like I am sitting in the locker room waiting for my opponents name to be drawn. I guess this is a moment in life you hope you have trained well for. As I’m sitting here typing this into my phone, I am wondering if I am prepared to fight the 6’ 6” opponent. Is my faith, patience, charity, belief, and hope sufficient? Have I honored my Priesthood and am I worthy to commune on a Divine level? What do I know about the Atonement? Can I access it on a level sufficient to help Arianna bear what may be ahead of her? Is my relationship with God and Christ enough to call upon the powers of Heaven for comfort and support for Arianna to endure what challenge may come.
However, my mind cannot rest from the thought of what if Arianna does not make it? Was I as her father prepared spiritually, physically, emotionally, and intellectually enough to do all I could to help her? And, did I give her the love and care that she needed while she lived her short two years on this earth? I guess those are good questions regardless Arianna’s situation. Questions I should ask myself about Haley, Kaley, Taylor, and Laney. And, all of the people I love.
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