Dear Friends and Family,
Wes here, with Ashley next to me, resting. Just thought we'd give some upcoming deadlines and other useful links and info so you guys can stay informed.
If you hadn't heard, Ashley's sister designed some support T-shirts available for purchase here. There are only 4 days left to purchase and they look quite snazzy. They'll get made on September 1st and ship out so you can take selfies in them or whatever kids these days are doing and post them on your favorite social media site.
Also, we are very grateful for all contributions received so far and the time period for Ashley's fundraiser is ending in two days, Friday the 15th, so if you've been thinking about it and want to do it, now is the time. We have been and will continue to put these contributions to good use, buying all necessary things to ensure Ashley makes a swift and comfortable recovery. Of course, all extra funds that we don't use will be donated to the Leukemia and Lymphoma Society.
Tonight, I'll do another post which will contain an interview with Ashley on how she's doing and her feedback from all her support. Stay tuned and have a wonderful day!
~Wes
Thursday, August 14, 2014
Friday, August 1, 2014
Transitioning Home
Hi everyone, Wes here, blogging from home in Seaside and I figured I'd let you know how Ashley's first full week at home is going. There have been some noticeable differences between life in the hospital and life at home:
Cons:
-No nurses in the other room when we have a question/concern/panic moment
-No one to clean up, do laundry, make food, etc
Pros:
-Basically everything else
-More comfortable, more calming, and of course, there's no place like home.
And aside from getting all the referrals and prescriptions figured out, it hasn't been a bad transition process, just quite a bit of keeping lots of plates spinning: scheduling appointments, calling in and picking up prescriptions, housekeeping, nurse duties including administering and tracking medicine doses. I guess another pro is that all this is giving me the opportunity to be more responsible.
Ashley's been feeling better overall. Of course, some days are better than others. And of course Ashley wants to maximize the good days so she goes hard and tuckers herself out. But I'm doing all that I can to keep her comfortable and on-track for her recovery.
I hope you all spread the word that Ashley is doing well and has made it home. I've been told multiple times that people are so relieved to hear it, so I would hate to have people unnecessarily anxious because they hadn't heard the good news.
Thanks again for all your continued support, love and prayers. I'll see if I can get Ashley to either write or dictate part of a post sometime soon, so you can hear from her directly!
Take care and God bless!
~Wes
Wednesday, July 23, 2014
Can you believe it's been a month?
Hey everybody, I know you've all been hungry for an update, so I'll cut to the chase:
The docs say she is doing so well, she may get to go home as early as Friday! That's right! She has been getting up more, going on 3-5 walks of increasing length every day, she's been eating more food. She even had a whole hamburger for dinner the other night. So the docs and nurses have been prepping us for transitioning to home; lining up providers, making sure the pharmacy is ready for our prescriptions, training us on how to give her medication at home, recommendations of what to do, what to eat, what not to do, etc, etc.
So, its been an exciting few days and I'm sorry the blog has been a little quiet, but now you know that things are looking up, and that the worst of the storm has passed (God willing). But the docs said in the beginning, "If we can get you through this first month, you are going to start making significant progress in your recovery." And guess where we are? June 23rd was when we went to the ER for the first time. So the docs were right. Almost like they studied for this kind of thing. :)
Anyways, when we know the exact date we get to go home, we'll let you know, but for now, maybe hold off on more packages/cards/etc because we wouldn't want you to send it tomorrow and then we leave before we get it.
Thank you so, so much for all your continued prayers, happy thoughts, support and love throughout this. It has truly been a massive group effort on all of our parts to get Ashley through this, and for that we are eternally grateful. Ashley's still recovering and still having side effects from her medications and some residual pain from her surgery, so continued prayers of relief from those things would be appreciated.
Thanks again, God bless, and have a great day!
~Wes
The docs say she is doing so well, she may get to go home as early as Friday! That's right! She has been getting up more, going on 3-5 walks of increasing length every day, she's been eating more food. She even had a whole hamburger for dinner the other night. So the docs and nurses have been prepping us for transitioning to home; lining up providers, making sure the pharmacy is ready for our prescriptions, training us on how to give her medication at home, recommendations of what to do, what to eat, what not to do, etc, etc.
So, its been an exciting few days and I'm sorry the blog has been a little quiet, but now you know that things are looking up, and that the worst of the storm has passed (God willing). But the docs said in the beginning, "If we can get you through this first month, you are going to start making significant progress in your recovery." And guess where we are? June 23rd was when we went to the ER for the first time. So the docs were right. Almost like they studied for this kind of thing. :)
Anyways, when we know the exact date we get to go home, we'll let you know, but for now, maybe hold off on more packages/cards/etc because we wouldn't want you to send it tomorrow and then we leave before we get it.
Thank you so, so much for all your continued prayers, happy thoughts, support and love throughout this. It has truly been a massive group effort on all of our parts to get Ashley through this, and for that we are eternally grateful. Ashley's still recovering and still having side effects from her medications and some residual pain from her surgery, so continued prayers of relief from those things would be appreciated.
Thanks again, God bless, and have a great day!
~Wes
Thursday, July 17, 2014
So far so good
It pains me to be away from my sister for a time, but like all of you, I pray for her and think of her all day. Thank you for that. Your prayers are felt!
Slowly Ashley has been able to get more mobile, and they constantly are adjusting her meds to make her more comfortable. And scans and tests have come back within range. Praise God!
She got her first real shower and shampoo in 13 days and in my absence my mom fashioned Ashley up with a fresh set of braids.
By the generosity of over 75 people, we are getting closer to their financial help goal at youcaring.com/supportthestclairs
Right now, many are still asking what they can do. As we could only imagine, being in Ashley and Wesley's shoes has been difficult and can at times be very discouraging. I would love to help show our support/encouragement by participating in a shirt fundraiser. Proceeds get donated to the them. Send pics of you wearing your shirts in support to wesleystclair@gmail.com! And post to twitter or Instagram with hashtag: #supportthestclairs
Here's the link: www.booster.com/supportthestclairs
Much love,
The Big Sister
Sunday, July 13, 2014
Progress, slowly but surely.
Hey folks, it's been a few days so I figured I'd give an update. Things have been getting a little better every day, so I've kind of just been living in the moment, you know? But I figure we should share the good progress news with everyone so we can all feel the joy. :)
Every morning the neurology and hematology teams come in to visit us, give us a report on how she's doing, mention anything concerning and for the last few days they've said nothing but good things, really. They say her white blood cell count is looking good. They're keeping an eye on her platelet count, but they say its within a good range, and have been giving her some when they need to bump it up. They've been giving her electrolytes when they determine she's a little low, but nothing alarming. And they've been giving her chemo, of course, which takes a little out of her in the evenings but not too bad. This coming week, when they've determined the danger of bleeding has passed, they are going to resume the blood thinner medication, gradually and carefully, in order to resume helping her body absorb the clots in the sinus arteries. The doctors say they the clots are shrinking, barely, but that is great according to them. As long as they aren't growing, which they're not.
As Ashley is recovering from the surgery, her pain is coming down to lower levels, so they don't have to give her such heavy duty meds to reduce it, so she's able to stay awake during the day more and get back into a routine. The doctors are emphasizing her getting up as much as possible; going for walks, sitting in a chair for meals, etc to stimulate her muscles and help with her recovery. Of course when you're recovering from surgery in the back of your head/neck area, the stiffness makes most movement painful and difficult, but Ashley is a fighter and has been, a little reluctantly, getting up and out of the hospital bed and room. Today, for instance, we went (with sunglasses) outside and sat in front of the nice fountain near the main doors to the hospital. It was sunny but nice out so we sat under an umbrella and enjoyed the warmth. She liked it. Also, we checked out the hospital gift shop because, as those who know Ashley know, she likes giving presents and was browsing to pick out souvenirs to give her niece and nephews.
Ashley had had some pretty troublesome nightmares a few nights in a row and that was keeping her from getting a good night's sleep, but they have since subsided. Also she is eating more regular food: PB&J sandwiches, goldfish crackers, chicken nuggets, etc. You know, good ol' comforting favorites. :)
Each day has its challenges, of course: pain spikes, feeling exhausted or weak from medicine/recovery process, etc. But the nurses are continuing to do everything they can to ensure she's comfortable and the doctors assure us that she's making excellent progress and they say she has a very good outlook.
So things are looking up, although we know this chapter isn't over yet, but through your love, prayers and support we are powering on and pushing through it.
Straight from the mouth of Ashley, "Thank you so much for the love and support. I can feel it and I can't imagine anyone going through something like this without it."
~Wes
Every morning the neurology and hematology teams come in to visit us, give us a report on how she's doing, mention anything concerning and for the last few days they've said nothing but good things, really. They say her white blood cell count is looking good. They're keeping an eye on her platelet count, but they say its within a good range, and have been giving her some when they need to bump it up. They've been giving her electrolytes when they determine she's a little low, but nothing alarming. And they've been giving her chemo, of course, which takes a little out of her in the evenings but not too bad. This coming week, when they've determined the danger of bleeding has passed, they are going to resume the blood thinner medication, gradually and carefully, in order to resume helping her body absorb the clots in the sinus arteries. The doctors say they the clots are shrinking, barely, but that is great according to them. As long as they aren't growing, which they're not.
As Ashley is recovering from the surgery, her pain is coming down to lower levels, so they don't have to give her such heavy duty meds to reduce it, so she's able to stay awake during the day more and get back into a routine. The doctors are emphasizing her getting up as much as possible; going for walks, sitting in a chair for meals, etc to stimulate her muscles and help with her recovery. Of course when you're recovering from surgery in the back of your head/neck area, the stiffness makes most movement painful and difficult, but Ashley is a fighter and has been, a little reluctantly, getting up and out of the hospital bed and room. Today, for instance, we went (with sunglasses) outside and sat in front of the nice fountain near the main doors to the hospital. It was sunny but nice out so we sat under an umbrella and enjoyed the warmth. She liked it. Also, we checked out the hospital gift shop because, as those who know Ashley know, she likes giving presents and was browsing to pick out souvenirs to give her niece and nephews.
Ashley had had some pretty troublesome nightmares a few nights in a row and that was keeping her from getting a good night's sleep, but they have since subsided. Also she is eating more regular food: PB&J sandwiches, goldfish crackers, chicken nuggets, etc. You know, good ol' comforting favorites. :)
Each day has its challenges, of course: pain spikes, feeling exhausted or weak from medicine/recovery process, etc. But the nurses are continuing to do everything they can to ensure she's comfortable and the doctors assure us that she's making excellent progress and they say she has a very good outlook.
So things are looking up, although we know this chapter isn't over yet, but through your love, prayers and support we are powering on and pushing through it.
Straight from the mouth of Ashley, "Thank you so much for the love and support. I can feel it and I can't imagine anyone going through something like this without it."
~Wes
Wednesday, July 9, 2014
We went outside today!
Hello everyone, time for an update.
This time it's "The Husband" aka Wes doing the update. Brittany has flown back to Texas (with plans to be back in CA soon, of course) so I decided to chime in on the blog. She'll still be doing updates with info received from me and Jonna, Ashley's mom, so if you prefer her writing style to mine, don't worry. :)
Today was a good day. Positive things of note:
- We went outside for the first time since being admitted to the hospital. She climbed in the wheelchair and we took a spin out the doors to one of the hospital patios and sat in the shade for a bit, felt the breeze and got some fresh air, although she still wore the filtered breathing mask just to keep her safe. Ashley's advice for a better trip outside next time: sunglasses. Yes, dear. :)
- She's getting up and walking to the the bathroom when she needs to (with assistance)
- Today they removed the IV that was in her neck, which Ashley is quite happy about. No more pinching and having to worry about it catching on things when moving around.
She's been resting during the day in between the short walkabouts. I ask her sometimes and she says she's not dreaming, but in between naps, she'll ask me things like, "How was your test?" she says. "Did I take a test?" I ask, slightly confused. "You said you had to take a test a while ago..." she says, sleepy but confident.
"Mmm, no not really. I might take the DLPT soon, though..." (my language proficiency test) "No, that's not it...," she says as she drifts off to sleep again.
Too cute.
She's being a real trooper through it all, especially when the nurses ask her to get out of bed and move around, which is always a little painful, but necessary for her recovery and healing.
To wrap up, I want to thank everyone who has helped us throughout this ordeal. Every single bit of it has helped. Every positive message of love and encouragement, every donation, every care package, get-well card and gift. All of it has either reassured us, recharged us or relieved us somehow in order to keep our spirits up and keep fighting this thing. God has blessed us with the best friends and family on earth, as well as the best nurses and doctors who just reassured me that Ashley is doing great. So all is well on this bumpy road of ours. Praise the Lord! and keep the prayers coming.
Until next time,
Take care and God bless,
Wes aka "The Husband"
This time it's "The Husband" aka Wes doing the update. Brittany has flown back to Texas (with plans to be back in CA soon, of course) so I decided to chime in on the blog. She'll still be doing updates with info received from me and Jonna, Ashley's mom, so if you prefer her writing style to mine, don't worry. :)
Today was a good day. Positive things of note:
- We went outside for the first time since being admitted to the hospital. She climbed in the wheelchair and we took a spin out the doors to one of the hospital patios and sat in the shade for a bit, felt the breeze and got some fresh air, although she still wore the filtered breathing mask just to keep her safe. Ashley's advice for a better trip outside next time: sunglasses. Yes, dear. :)
- She's getting up and walking to the the bathroom when she needs to (with assistance)
- Today they removed the IV that was in her neck, which Ashley is quite happy about. No more pinching and having to worry about it catching on things when moving around.
She's been resting during the day in between the short walkabouts. I ask her sometimes and she says she's not dreaming, but in between naps, she'll ask me things like, "How was your test?" she says. "Did I take a test?" I ask, slightly confused. "You said you had to take a test a while ago..." she says, sleepy but confident.
"Mmm, no not really. I might take the DLPT soon, though..." (my language proficiency test) "No, that's not it...," she says as she drifts off to sleep again.
Too cute.
She's being a real trooper through it all, especially when the nurses ask her to get out of bed and move around, which is always a little painful, but necessary for her recovery and healing.
To wrap up, I want to thank everyone who has helped us throughout this ordeal. Every single bit of it has helped. Every positive message of love and encouragement, every donation, every care package, get-well card and gift. All of it has either reassured us, recharged us or relieved us somehow in order to keep our spirits up and keep fighting this thing. God has blessed us with the best friends and family on earth, as well as the best nurses and doctors who just reassured me that Ashley is doing great. So all is well on this bumpy road of ours. Praise the Lord! and keep the prayers coming.
Until next time,
Take care and God bless,
Wes aka "The Husband"
Monday, July 7, 2014
While you were sleeping
Dear sister,
While you are sleeping...
They play for you.
Sweet dreams my sweet baby sister. :)
~ The Big Sister
Sunday, July 6, 2014
Baby Steps
So they keep telling us that this is a marathon and not a sprint. Little changes, little adjustments. Baby steps.
But apparently, even after brain surgery, my sister is still the overachiever. They told us before she went into surgery that someone with this surgery without her other diseases, risks, would be stable 3 days post, but to expect that to be increased for her since she has APL, clotting, bleeding risk, and low immunity.
Psh. It's not even 24 hours later and she has a new room on a neuro floor (non ICU), where she will be for the next 24hrs.
She is in quite a bit of back "seizing" pain, along with neck pain. The pain meds just help for a bit, so she is uncomfortable and in pain (and anxiety due to that) quite often. Prayers for that please.
Otherwise they tell us things are as they should be for her right now. They just wheeled her away for a CT scan (routine).
Will update more later.
Thanks all, love you guys.
~ The Big Sister
(UPDATE 8:30pm): They tried the CT but it was too painful to complete the scan. So she is getting some rest and will have CT and EKG done later sometime tonight.
Saturday, July 5, 2014
God Gives New Mercies Every Morning (or afternoon)
I am going to write this "fire hydrant style" as my brother (Wesley) calls the rambling that will likely not be edited before I hit that Publish button, because y'all, I've got to be quick. I'm on my way to visit my sister, who is already waking up in recovery as we speak.
Her surgery went as well as it could have. They removed a small piece of bone and put in a mesh to allow her brain the room it needs to swell and heal if necessary. She is responsive with cognitive tests. They removed the bleeding clot and immediately alleviated pressure from the brain swelling.
She will still have a rough road ahead.
Because of this complication she isn't able to get the blood thinning drug therapy to help the clotting in both of her nerves in her brain until she is more fully recovered from surgery. Right now, her clotting is considered mild, but without help could move to severe quickly, leading to more invasive measures to get the clots gone, or another trip to brain surgery to stop another bleed elsewhere. We aren't sure if she can be on the chemo/arsenic treatment yet, so there's the concern that the leukemia isn't being fought at this time. So please, keep sharing the link to the sites, and keep praying. We have a strong team of doctors here and a strong ARMY of people praying together.
BUT SHE MADE IT THROUGH BRAIN SURGERY Y'ALL!!!
God is SO so good! THANK HIM!
Now I'm going to go listen to my baby sister tell me good afternoon. I can't imagine too many things better than that.
~The Big Sister
Her surgery went as well as it could have. They removed a small piece of bone and put in a mesh to allow her brain the room it needs to swell and heal if necessary. She is responsive with cognitive tests. They removed the bleeding clot and immediately alleviated pressure from the brain swelling.
She will still have a rough road ahead.
Because of this complication she isn't able to get the blood thinning drug therapy to help the clotting in both of her nerves in her brain until she is more fully recovered from surgery. Right now, her clotting is considered mild, but without help could move to severe quickly, leading to more invasive measures to get the clots gone, or another trip to brain surgery to stop another bleed elsewhere. We aren't sure if she can be on the chemo/arsenic treatment yet, so there's the concern that the leukemia isn't being fought at this time. So please, keep sharing the link to the sites, and keep praying. We have a strong team of doctors here and a strong ARMY of people praying together.
BUT SHE MADE IT THROUGH BRAIN SURGERY Y'ALL!!!
God is SO so good! THANK HIM!
Now I'm going to go listen to my baby sister tell me good afternoon. I can't imagine too many things better than that.
~The Big Sister
The Good, The Bad and The Really, Really Ugly
So 3 days ago my little sister was stable, sitting in a chair next to her hospital bed, wearing her glasses, with fresh "Katniss" (Hunger Games) braids she had me do in her hair, eating dinner and laughing at a Friends episode with me and Wes. {the good}
Yesterday into this morning (July 4) my sister has had quite a bit of head pain, tailbone pain, dizziness and vomiting. It was difficult to watch, not having any way to help her feel relief. {the bad}
And tonight, or I guess, this morning, sitting here in a waiting room at 1:30am, my baby sister is back in Neuro ICU. There is no way to make this sound any better than it is, so here goes...
Her brain is swelling and she has bleeding in her brain. She also still has the brain clotting and APL (leukemia), however treatment for those have been put on hold to address the swelling and bleeding. So at 8am (California time) my sister will have brain surgery to relieve the pressure. {the really, really, UGLY}
I understand hearing (reading) this may be overwhelming. To hear it out loud from a dozen doctors and nurses to suddenly swarm her room wasn't easy either. And wrapping your mind around her status right now (especially as she insists every time I tell her I love her that she's "fine") is not an easy task (personally I went outside the hospital to scream/ugly cry/cuss/hyperventilate). You may be there too. And that's understandable.
BUT here's what I cling to:
*She's in the best hospital in the nation for what she has
*Now back in ICU, she has 24 hour one-to-one nurse and teams of specialists on her case
*She still has a sense of humor, and cognitive awareness is still there (including the sass)
*She has an army of people, like you, praying for her and thinking of her
AND
(an excerpt from one of my devotionals today, Streams in the Desert)
(God) is watching in the hard places and will not allow one trial too many; He will let the dross be consumed, and then He will come gloriously to your help. Do not grieve Him by doubting his love. Nay, lift up your head, and begin to praise Him even now for the deliverance which is on the way to you, and you will be abundantly rewarded for the delay which has tried your faith.
The vision is for a future time. It describes the end, and it will be fulfilled. If it seems slow in coming, wait patiently, for it will surely take place. Habakkuk 2:3
We will wait, and we will pray. And like many of you, our prayers come through our hearts when our words fail. We are thankful for all of you. Keep spreading the link, and let others know to do the same. There are many of us together, praying together. And in that there's HOPE.
God Bless,
~The Big Sister
I figured I should weigh in here. I second everything Brittany said. I'm not sure what else to say except thanks for all the prayers and support from across the spectrum. From close friends and family to friends of friends of friends, it has really been touching. I am comforted knowing that so many people out there who love Ashley (and me) are keeping us in their thoughts and praying diligently for her swift recovery and her medical team's wise care. Please keep it up. As they say, squeaky wheels get the grease. Let's all squeak loud and see Ashley through this together!
~The Husband
Wednesday, July 2, 2014
Good Days and Bad Days
Although I'm sure, knowing my sister, she would only want me to post the highlights of this journey as to not worry or concern anyone, today I am posting asking for your continued prayer.
The doctors in the hematology oncology unit (where she will be staying for the next 4 weeks) let us know that she will have good (feeling) days and not so good days, although her progress with medication and blood pressure and such will still be progressing forward. And yesterday through this morning has been one of those "bad days." It is difficult to watch my baby sister in so much discomfort, and down right awful to stand by helplessly watching her in pain.
Please pray for my little sister.
This morning they will be doing an x-ray to determine the cause of her intense joint pain. Please pray that they will be able to find something to get her relief so that she can get the rest her body needs. {UPDATE: 4pm - Ashley is finally resting. PRAISE GOD. She is in a great deal of pain when not on heavy meds, but the doctors are on it. Hoping physical therapy might work in the days to come.}
I am thankful for all of you who have rallied around my sister.
Thank you to those who have been praying for her, helped her financially through the youcaring.com/supportthestclairs site, and those who have sent cards and gifts to make her hospital room look a little more like home.
God Bless,
~ The Big Sister
The doctors in the hematology oncology unit (where she will be staying for the next 4 weeks) let us know that she will have good (feeling) days and not so good days, although her progress with medication and blood pressure and such will still be progressing forward. And yesterday through this morning has been one of those "bad days." It is difficult to watch my baby sister in so much discomfort, and down right awful to stand by helplessly watching her in pain.
Please pray for my little sister.
This morning they will be doing an x-ray to determine the cause of her intense joint pain. Please pray that they will be able to find something to get her relief so that she can get the rest her body needs. {UPDATE: 4pm - Ashley is finally resting. PRAISE GOD. She is in a great deal of pain when not on heavy meds, but the doctors are on it. Hoping physical therapy might work in the days to come.}
I am thankful for all of you who have rallied around my sister.
Thank you to those who have been praying for her, helped her financially through the youcaring.com/supportthestclairs site, and those who have sent cards and gifts to make her hospital room look a little more like home.
God Bless,
~ The Big Sister
Monday, June 30, 2014
Gremlins and other such layman terms
6/30/14
So I was talking to Ashley yesterday as she was up in a chair, eating her lunch (YES! PRAISE GOD!) and she said she was thinking about this random fast-onset APL disease (leukemia) she now has. Several people have asked things like, how long has she had it, why does she need to stay in the hospital for a month, what causes it, etc., so here's some explanations:
It's Acute Promyelocyctic Leukemia. The acute part says that it was quick on set, so it's likely she hasn't had it for even a month. It's not hereditary, and will not affect her having children in the future.
The treatment includes a pill-form of chemotherapy (doesn't cause hair loss or nausea), a cancer zapping form of arsenic, a blood thinner for the clots in her brain and the occasional Tylenol. SO that means her immune system is depleted, which means she suseptable to infection, and with blood thinner is a bleeding risk. Nothing scary about that, just want to keep her in a soft bed or chair a few yards away from a nurse in the event she gets a scratch walking to and from the bathroom or taking a shower - BTW (for you over 40 that means "by the way") she did take her first shower today and feels like a million bucks! She should be getting a face mask filter thing today so she can start taking laps around the hospital. GOD IS SO GOOD!
Some have asked what causes this form of leukemia. Well, Ashley's explanation is that it's much like Gremlins. What has been explained by her doctors is that it is immature, over-excited, over-zealous white blood cells that have crashed the place, super multiplied and wreaked havoc. Although the doctors don't know what causes those cells to do that (other than feeding/getting them wet after midnight. haha. jk.); they do know exactly how to get them to stop. Which is what the chemo/arsenic cocktail are currently doing as we speak. They want her to be in remission (which they have somehow got down to a science that it will be approximately 4 weeks) before leaving to do out-patient treatment.
Her blood pressure, heart rate, and balance of meds have all been in range/balance for the last couple of days. Her biggest complaint right now is that she tends gets hot at night, gets tired quickly and her neck gets stiff trying to find a comfortable position to sleep, and we will take that! By the grace of God, she is doing AMAZING.
THANK YOU FOR YOUR PRAYERS! Please keep continuing to share the youcaring.com/SupportTheStClairs link to help her with the costs of her and family staying in the hospital while she receives care.
Lamentations 3:23 - Great is his faithfulness; his mercies begin afresh each morning.
~ The Big Sister
So I was talking to Ashley yesterday as she was up in a chair, eating her lunch (YES! PRAISE GOD!) and she said she was thinking about this random fast-onset APL disease (leukemia) she now has. Several people have asked things like, how long has she had it, why does she need to stay in the hospital for a month, what causes it, etc., so here's some explanations:
It's Acute Promyelocyctic Leukemia. The acute part says that it was quick on set, so it's likely she hasn't had it for even a month. It's not hereditary, and will not affect her having children in the future.
The treatment includes a pill-form of chemotherapy (doesn't cause hair loss or nausea), a cancer zapping form of arsenic, a blood thinner for the clots in her brain and the occasional Tylenol. SO that means her immune system is depleted, which means she suseptable to infection, and with blood thinner is a bleeding risk. Nothing scary about that, just want to keep her in a soft bed or chair a few yards away from a nurse in the event she gets a scratch walking to and from the bathroom or taking a shower - BTW (for you over 40 that means "by the way") she did take her first shower today and feels like a million bucks! She should be getting a face mask filter thing today so she can start taking laps around the hospital. GOD IS SO GOOD!
Some have asked what causes this form of leukemia. Well, Ashley's explanation is that it's much like Gremlins. What has been explained by her doctors is that it is immature, over-excited, over-zealous white blood cells that have crashed the place, super multiplied and wreaked havoc. Although the doctors don't know what causes those cells to do that (other than feeding/getting them wet after midnight. haha. jk.); they do know exactly how to get them to stop. Which is what the chemo/arsenic cocktail are currently doing as we speak. They want her to be in remission (which they have somehow got down to a science that it will be approximately 4 weeks) before leaving to do out-patient treatment.
Her blood pressure, heart rate, and balance of meds have all been in range/balance for the last couple of days. Her biggest complaint right now is that she tends gets hot at night, gets tired quickly and her neck gets stiff trying to find a comfortable position to sleep, and we will take that! By the grace of God, she is doing AMAZING.
THANK YOU FOR YOUR PRAYERS! Please keep continuing to share the youcaring.com/SupportTheStClairs link to help her with the costs of her and family staying in the hospital while she receives care.
Lamentations 3:23 - Great is his faithfulness; his mercies begin afresh each morning.
~ The Big Sister
Saturday, June 28, 2014
First Update 6/28/14
What a difference a couple of weeks can make.
Two weeks ago my sister had a headache and today she has APL (leukemia) and blood clots in her brain. Believe me, I understand how scary that sounds, we all do, but I want to make this blog so that I (and members of our family) can give accurate updates as to the status of her diseases and her care.
We hope that this will help keep concerns from speculation, not knowing details or miscommunication from second-hand information at a minimum while providing everyone with the first hand information they need, all in one place, to pray for and support Ashley, Wesley and family during this time. We are SO incredibly thankful and blessed by the outpouring of encouragement, thought and prayer. We know now more than ever how powerful a support system such as this can be.
To catch up:
Sunday night, June 22, 2014, Ashley was in the ER due to pain in her head and neck, vomiting and double vision. She was told to set up appointments with neurologist and ophthalmologist the next day. But by the next morning, they were back in the ER. The doctors quickly found that she should be transferred to ICU within a specialized hospital in Northern California. And praise God, it's the hospital that is nationally recognized for this specific disease. Ashley and her husband, Wesley, are stationed with the Air Force, just under two hours away. God is GOOD.
On June 24th, her brilliant team (at least a dozen) doctors confirmed that pressure she had in her spinal column and eyes was due to the clotting in her brain, which was set off by Acute Promyelocytic Leukemia. They started her on chemo, a huge dose of vitamin A, pain meds, even a form of arsenic to attack the cancer cells, all while trying to establish a safe range of blood pressure (it has stayed elevated) and a healthy balance for blood thinner to shrink the blood clots in her brain. What is awesome is that the chemo she is taking doesn't have the hair loss or nausea side effects known with other types of chemo treatments. And the best thing is, my new favorite word, which they say quite frequently, that this specific, although somewhat rare combination of diseases is CURABLE. Just typing it brings me joy. My baby sister is in the hands of our GREAT God. THANK GOD for that.
Last night the doctors found that she was no longer considered critical, but STABLE! Enough stability to lose some of the wires and needles and make a trip downstairs to a private room in the hematology (not ICU) wing. PRAISE GOD!
She has a long road ahead, with keeping the meds balanced, pressure down and clotting to subside. But it is a road to my next new favorite word, REMISSION. Please continue to pray for that. Doctors have said that she will remain in the hospital until that word is said, which they said will be another 4 weeks. She will then be receiving out patient treatment for approximately the next 6 months.
My sister means the world to me, not just because she's my only sibling (my twin 6 years apart) but because she's my rock, my best friend and often my compass. She continually teaches me what it means to give of yourself, to put others first. Even laying in that hospital bed she thinks of everyone else's comfort above her own. I would do anything to take this from her, but instead I will celebrate each milestone, holding her hand, and praying alongside each of you that love her as well. Thank you so much for loving my baby sister as you have and will continue to do. I can't express what that means.
Wesley and Ashley will be here away from home for at least a month, and family will be flying back and forth from Texas. They have needs incurring from staying in housing on campus and the loss of her income, and family airfare. If you feel led to help them so that they can focus on her and not the incidentals of life, please click the "Give Now" link on the column to the right. Thank you SO much.
~ The Big Sister
NOTE: Ashley cannot receive flowers or plants to the hospital due to her lack of immunity. If you would like to send notes of encouragement or small gifts, they can be sent to the on campus housing. Email Wesley (wesleystclair@gmail.com) or myself (brittcarp09@gmail.com) for address. Thank you.
Two weeks ago my sister had a headache and today she has APL (leukemia) and blood clots in her brain. Believe me, I understand how scary that sounds, we all do, but I want to make this blog so that I (and members of our family) can give accurate updates as to the status of her diseases and her care.
We hope that this will help keep concerns from speculation, not knowing details or miscommunication from second-hand information at a minimum while providing everyone with the first hand information they need, all in one place, to pray for and support Ashley, Wesley and family during this time. We are SO incredibly thankful and blessed by the outpouring of encouragement, thought and prayer. We know now more than ever how powerful a support system such as this can be.
To catch up:
Sunday night, June 22, 2014, Ashley was in the ER due to pain in her head and neck, vomiting and double vision. She was told to set up appointments with neurologist and ophthalmologist the next day. But by the next morning, they were back in the ER. The doctors quickly found that she should be transferred to ICU within a specialized hospital in Northern California. And praise God, it's the hospital that is nationally recognized for this specific disease. Ashley and her husband, Wesley, are stationed with the Air Force, just under two hours away. God is GOOD.
On June 24th, her brilliant team (at least a dozen) doctors confirmed that pressure she had in her spinal column and eyes was due to the clotting in her brain, which was set off by Acute Promyelocytic Leukemia. They started her on chemo, a huge dose of vitamin A, pain meds, even a form of arsenic to attack the cancer cells, all while trying to establish a safe range of blood pressure (it has stayed elevated) and a healthy balance for blood thinner to shrink the blood clots in her brain. What is awesome is that the chemo she is taking doesn't have the hair loss or nausea side effects known with other types of chemo treatments. And the best thing is, my new favorite word, which they say quite frequently, that this specific, although somewhat rare combination of diseases is CURABLE. Just typing it brings me joy. My baby sister is in the hands of our GREAT God. THANK GOD for that.
Last night the doctors found that she was no longer considered critical, but STABLE! Enough stability to lose some of the wires and needles and make a trip downstairs to a private room in the hematology (not ICU) wing. PRAISE GOD!
She has a long road ahead, with keeping the meds balanced, pressure down and clotting to subside. But it is a road to my next new favorite word, REMISSION. Please continue to pray for that. Doctors have said that she will remain in the hospital until that word is said, which they said will be another 4 weeks. She will then be receiving out patient treatment for approximately the next 6 months.
My sister means the world to me, not just because she's my only sibling (my twin 6 years apart) but because she's my rock, my best friend and often my compass. She continually teaches me what it means to give of yourself, to put others first. Even laying in that hospital bed she thinks of everyone else's comfort above her own. I would do anything to take this from her, but instead I will celebrate each milestone, holding her hand, and praying alongside each of you that love her as well. Thank you so much for loving my baby sister as you have and will continue to do. I can't express what that means.
Wesley and Ashley will be here away from home for at least a month, and family will be flying back and forth from Texas. They have needs incurring from staying in housing on campus and the loss of her income, and family airfare. If you feel led to help them so that they can focus on her and not the incidentals of life, please click the "Give Now" link on the column to the right. Thank you SO much.
Acute
Promyelocytic Leukemia and Sinus and Cerebral Vein Thrombosis - See
more at:
http://www.youcaring.com/medical-fundraiser/support-the-st-clairs/196805#sthash.wANsVYQh.dpuf
~ The Big Sister
NOTE: Ashley cannot receive flowers or plants to the hospital due to her lack of immunity. If you would like to send notes of encouragement or small gifts, they can be sent to the on campus housing. Email Wesley (wesleystclair@gmail.com) or myself (brittcarp09@gmail.com) for address. Thank you.
Acute
Promyelocytic Leukemia and Sinus and Cerebral Vein Thrombosis - See
more at:
http://www.youcaring.com/medical-fundraiser/support-the-st-clairs/196805#sthash.wANsVYQh.dpuf
Acute
Promyelocytic Leukemia and Sinus and Cerebral Vein Thrombosis - See
more at:
http://www.youcaring.com/medical-fundraiser/support-the-st-clairs/196805#sthash.wANsVYQh.dpuf
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