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
Wednesday, July 23, 2014
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
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