I never imagined chemo was going to be a blessing.
Can't understand being eager to start chemo as a means to relieve some issue inside my baby.
Coming from a naturopathic background, leaning on those people (a.k.a. modern medicine professionals) is an adjustment. Accepting what the doctors and nurses are telling me is hard. I'm getting better because God is quickly showing me that I am NOT equipped for this journey but others are. Heeding the wisdom of others.
Hearing Dempsey say the following was both a dagger to my heart and a sign of his acclamation "I like my [hospital] bed."
The smell of electrolytes makes me want to vomit.
Just because my baby has leukemia doesn't mean the trials you are facing are less big or traumatic for you.
Be careful what you pray for. ;-) You NEVER know how God will choose to answer your request.
With shock and world-updside-downing, acceptance will come- but not all at once and it may very well retreat. Let it ebb and flow. It's called grief and living.
I'm worried about my marriage. Not that it won't last but that we don't know how to appropriately tend to it and cultivate it right now. We WILL NOT leave Dempsey without one of us for long enough to have a "date". I believe this fact will change once we are no longer living at CHOC.
It's mind-boggling how you can feel EVERYTHING and still be numb.
Being away from CHOC brings me peace. Rest is still being tamed. But it seems like I am better/ stronger when I'm at CHOC for having been away.
I've had the thought, once or twice, about whether or not it's okay to ask God to take my baby so he doesn't have to suffer. I'm human and one whose heart is crushed under the gravity/ weight of the current situation. I quickly remember that this is a temporary sentence. ALL (cancer) is not a life sentence. It's a sentence, to be sure, but Dempsey WILL prevail.
Smart nurses here are telling us that red heads are the toughest. I don't doubt it.
Trying to let Dempsey lead as much as he needs to. Too many questions, even to help him, frustrate him to the point of tears. So, I am learning to tell him "YOU tell me what you want." It helps him. I'm growing.
Working to embrace the abilities and care of staff here to take over when I just cannot go any further. Example: bathing Dempsey. I let nurses and assistants do the tough stuff while I run like a big fat coward to the lobby and make phone calls. The guilt of abandoning him is lessening each time (this was #2) as I get to swoop in and love him post-ordeal.
Praise God for no fever in Dempsey right now and that everything else (rash, infection, blood counts) is stable.
I miss social media for some moments of this journey.
I'm grateful that the Tragedy of '08 taught me some valuable lessons that I am able to implement in this tragic time. Like this blog. Like leaning into self-care in ways I didn't know how to then. Like delegating tasks/ needs from the get-go. Like releasing control moment to moment so that God can lead me. Like not looking for the answers but focusing more on just putting one foot in front of the other and breathing.
I'm going to treat myself to an Origami Owl bracelet with Dempsey's name and leukemia/ faith/ birthstone to mark this journey.
I text the following to a friend: "... I'm convinced EVERYONE should be taught Lamaze breathing because we "birth" many more things in life than just babies. That is something that is a HUGE help for Demps- and me. I have yet to collapse or pass out, though I have been close."
This is hard. I doubt. I question. Faith? What faith? God? Is there one? Then I just look at what we are putting these little bodies through and I realize, there must be a God... how could we have evolved to handle these kinds of torturous cures? My belief. Does not have to be your belief. No judgement there.
I am suddenly thankful for all sorts of things that have been on my sh** list: too much technology, lethargy, chemo, hard core antibiotics, narcotics, synthetics, dyes... I always acknowledged they had a place in this world but was doing my darndest to avoid them. Now, there is an air of "hold nothing back" when it comes to healing my baby and keeping him sane/ comfortable through this trial.
Okay, head is rather empty right now. Praise God. Love this therapy blog.
Saturday, April 9, 2016
Stats
Another transfusion.
A lot more meds (doses of the same)- we added Benadryl.
Increased frequency of dilaudid (narcotic pain med) instead of increased dose. *Did you know gingers metabolize certain things faster than most?
Increased leg pain- cancer cells in your bones will do that.
"Super owie hurt" because some genius taped his port tube more than they should have so when they draw labs it's the adhesive that hurts, not the draw itself.
Family time with Granny, Granddad, and Sawyer. Did Jake's heart good to see Sawyer and show him around the hospital. Floor 2 is pretty cool, just saying.
Dempsey hasn't eaten much today.
Dempsey has had a low grade fever today, hence the extra lab draws. Tylenol seems to be helping.
Dempsey moved his bowels today. This is a BIG deal. With the increase in narcotic use constipation is a real concern.
Jake hooked up the Wii and even played with Dempsey. Sweet images in my brain and on my heart. Another blessing for Jake.
Our house was cleaned by amazing fairies this morning.
Jake is currently away embracing the self-care notion with my whole-hearted support.
Nothing new reported by doctors. This is a good thing as we are in wait-and-see mode with antibiotics and his secondary infection.
His rash (antibiotic allergy most likely) is maintaining and not worsening. However, he did start to scratch it ever so slightly. We are monitoring it as well.
Dempsey has not thrown up.
I had to be Mom today. There was a bit of stern talking happening because although he is suffering, frustrated, angry, hurting, and who knows what else... he still doesn't get to be disrespectful to parents. Nurses encourage parents to maintain as much normalcy with the kids as possible because, believe it or not, that is comforting to the kids- knowing boundaries- and it helps keep life running smoother over the transition our of hospital into our new "normal" of life.
Doctors have been pleasantly surprised, if not down right shocked, by how we parent, our method of informing Dempsey about happenings (we front load our boys as much as possible so that they are prepared for what happens instead of lying to them, telling them all will be well and having sh** hit the fan, thus breaking trust). The tell me "You're doing so well, mama."
Jake and I seem to have found a rhythm in regards to our self-care time. Since he can sleep at the hospital (don't know how) and I cannot, I go home in the wee hrs of the morning to sleep in our bed. God bless him!
Dempsey just peed himself because he was sleeping and moving him to pee is so painful. I just let it happen and am URGING the CN assistants to wake and bathe him instead of me trying to help him and cause him pain and then have to bathe him later which will be PAINFUL. Lord, help us!
The day isn't done but this post needs to be.
A lot more meds (doses of the same)- we added Benadryl.
Increased frequency of dilaudid (narcotic pain med) instead of increased dose. *Did you know gingers metabolize certain things faster than most?
Increased leg pain- cancer cells in your bones will do that.
"Super owie hurt" because some genius taped his port tube more than they should have so when they draw labs it's the adhesive that hurts, not the draw itself.
Family time with Granny, Granddad, and Sawyer. Did Jake's heart good to see Sawyer and show him around the hospital. Floor 2 is pretty cool, just saying.
Dempsey hasn't eaten much today.
Dempsey has had a low grade fever today, hence the extra lab draws. Tylenol seems to be helping.
Dempsey moved his bowels today. This is a BIG deal. With the increase in narcotic use constipation is a real concern.
Jake hooked up the Wii and even played with Dempsey. Sweet images in my brain and on my heart. Another blessing for Jake.
Our house was cleaned by amazing fairies this morning.
Jake is currently away embracing the self-care notion with my whole-hearted support.
Nothing new reported by doctors. This is a good thing as we are in wait-and-see mode with antibiotics and his secondary infection.
His rash (antibiotic allergy most likely) is maintaining and not worsening. However, he did start to scratch it ever so slightly. We are monitoring it as well.
Dempsey has not thrown up.
I had to be Mom today. There was a bit of stern talking happening because although he is suffering, frustrated, angry, hurting, and who knows what else... he still doesn't get to be disrespectful to parents. Nurses encourage parents to maintain as much normalcy with the kids as possible because, believe it or not, that is comforting to the kids- knowing boundaries- and it helps keep life running smoother over the transition our of hospital into our new "normal" of life.
Doctors have been pleasantly surprised, if not down right shocked, by how we parent, our method of informing Dempsey about happenings (we front load our boys as much as possible so that they are prepared for what happens instead of lying to them, telling them all will be well and having sh** hit the fan, thus breaking trust). The tell me "You're doing so well, mama."
Jake and I seem to have found a rhythm in regards to our self-care time. Since he can sleep at the hospital (don't know how) and I cannot, I go home in the wee hrs of the morning to sleep in our bed. God bless him!
Dempsey just peed himself because he was sleeping and moving him to pee is so painful. I just let it happen and am URGING the CN assistants to wake and bathe him instead of me trying to help him and cause him pain and then have to bathe him later which will be PAINFUL. Lord, help us!
The day isn't done but this post needs to be.
Y'all, This is HARD
Another day. More pain. More meds. More waiting. More emotions. More numbness. More questions. More peace. More faith. More doubt. More heartache. More love. More support. More gifts. More blessings. More trials. More choices. More joy. More sadness. More anger. More disbelief. More acceptance. More tears. More words. More silence. More fear. More courage. More prayer. More hope. More noise. More distraction. More attention. More annoyance. More smells. More people. More expectations. More generosity. More loneliness. More togetherness. More learning. More coping. More mess. More records. More milestones. More doctors. More nurses. More trash. More food. More data. More blood. More protection. More release. More sleep. More family. More friends. More consolation.
As you can see... there is more in our life. Plain and [does simple fit here?].
As you can see... there is more in our life. Plain and [does simple fit here?].
Friday, April 8, 2016
To a Friend, To You All
I just wrote this to a friend on Instagram and felt it applied to ALL who are reading this blog and supporting Dempsey (& family) through this.
Thank you for everything! The prayers most of all. The Lord knows the situation and is hearing the cries of his children. I don't know WHY he chose Dempsey for this but he did. I keep trying to tell myself that Dempsey was NEVER mine, but ALWAYS God's. I am here to love him and care for him with God's guidance while we walk this earth in the hope of perfect eternal living in the Kingdom. I can say all this in this moment but know it can change by the time I'm done typing. 😶
Thank you for everything! The prayers most of all. The Lord knows the situation and is hearing the cries of his children. I don't know WHY he chose Dempsey for this but he did. I keep trying to tell myself that Dempsey was NEVER mine, but ALWAYS God's. I am here to love him and care for him with God's guidance while we walk this earth in the hope of perfect eternal living in the Kingdom. I can say all this in this moment but know it can change by the time I'm done typing. 😶
Loving Father
*photo post story
Another Big Day
Today brought
- Portacath- where/ how he will have fluids given and withdrawn Pray that this is protected, never gets infected, and works perfectly the entire time this is in our little guy- 3 yrs.
- Skin biopsy- they took some skin from the port incision site so that they would have a sample of healthy cells to compare to his cancer cells. Pray that the discomfort from surgery will go away.
- ENT doctor went into his left ear again to clean it out more, take cultures, and check it all out
- ENT doctor believes the serious infection in Dempsey's ear (that is still riding on wings of hope) is called malignant (necrotizing) otitis externa; this is very serious because of it's placement in relation to Demspey's brain Pray that it is quickly controlled with IV antibiotics and that it doesn't spread, there is no facial nerve damage/ paralysis.
- Infectious disease person is watching Dempsey's ear area and parts of his trunk to keep him safe. Pray that no new infection shows up and that Dempsey's body will be allowed to address and kick this cancers butt.
- Nurse Melanie is my people- she is a southern woman who is blunt and loving
- Dr Neudorf, oncologist, said we will postpone starting chemo until next week so that Dempsey has a chance for the antibiotics to work on bringing his infection down. It is so strange to have leukemia treatment placed on hold because of an infection. I mean, we get it, but when you say it out loud it just seems strange.
- We are on pain management for the next few days. Hopefully there will be nothing new showing up. Pray that Dempsey remains stable and that nothing surprising comes up to delay or derail treatment and healing.
- Perspective: realizing there are thousands of parents whose children are fighting a more tragic diagnosis or life sentence than what we are. It doesn't make it easier to accept but it does help us remember that it could be worse. Pray for EVERY family in this hospital and around the world who are living a life with difficult health situations.
- Mother's- a store like Whole Foods, complete with a deli or delicious and healthy food- just what our weary bodies need to stay fueled for the fight. Pray that we will maintain our health and strength by putting in the right nutrients, getting the right rest, and working on self-care.
Thursday, April 7, 2016
Coral's Favorite Moment (of the day)
#prayfordempseykenagy
Diagnosis
It is A-L-L (acute lymphocytic/ lymphoblastic leukemia).
This is an answer to prayer.
With that news comes a little bad news, he still has a secondary infection that is a little concerning.
Tomorrow Dempsey will have his "port" procedure tomorrow. While they do the port they will get a skin sample so they know what his healthy cells look like in order to compare them to the unhealthy cells.
While he's under he will have other procedures done as well to help lessen the amount of anesthesia he's given.
This is an answer to prayer.
With that news comes a little bad news, he still has a secondary infection that is a little concerning.
Tomorrow Dempsey will have his "port" procedure tomorrow. While they do the port they will get a skin sample so they know what his healthy cells look like in order to compare them to the unhealthy cells.
While he's under he will have other procedures done as well to help lessen the amount of anesthesia he's given.
Mr. I
The MRI did show inflammation/swelling near his left ear in such a way that the ENT Dr wants to deal with it through meds, but nothing needed to be done surgically at this point. After on-going meds have done their job, will probably scan again.
The Good Day That Sucks
So, today was supposed to be an "easy" day. No invasive procedures, plenty of rest, refill his body with food.
Instead we get more anesthesia, and lots of pain, increased fear, and a Dempsey whose emotional well is running dry with anger thriving.
I am so tired. Spent. Weak. Angry. Helpless. Mad at medical people- and there are MANY here.
Jake says he's doing "okay".
Dempsey has managed to eat yogurt and pizza with a little bit of water. We are praying and hoping that he keeps it down.
Dempsey is in quite a bit of pain. 😖 Our baby is so sick and pain comes with the territory. We are learning that life is going to get way harder and complicated.
Right now Jake and Nurse Jessica are getting Dempsey to take oral meds. He seems to be pretty positive right now despite his pain and fristration. He's talking to the nurse and conversing with her. I am hiding like a coward over in the sleeping section because I am so weak I will hinder the process that NEEDS to happen. I was doing well this morning but that quickly fled when today really got going.
I don't want to be here!! I don't want Dempsey to be here!! They keep telling me this is all normal and that everythivg will be okay. Excellent, children are suffering all over and I'm supposed to be glad that we have THIS cancer? What kind of logic is that? My baby is in pain and I can't help him. I'm supposed to trust dozens of people in scrubs whom I've never met about a condition I've never experienced at a hospital I've never been connected to all while believing they're helping my child.
Jake is being so strong and he's got strength I can't find anymore. He's so good at talking Dempsey through things that are tough when Dempsey cries and resists. Jake is so gentle with Dempsey and can muscle through Dempsey's cries of pain.
Just heard Dempsey argue with Jake and say "Ayeye". I want to help but I can't. I want to rescue but I can't. I want to trust but I can't. I want to believe but I can't. I want to hop but I can't. I want to leave but I can't. I want to stay but I can't. I want to encourage but I can't. I want to cry but I can't. I want to swear but I can't. I want to pray but I can't. I want to sleep but I can't. I want to live but I can't. I want to... BUT I CAN'T!!!!
No results yet...
Instead we get more anesthesia, and lots of pain, increased fear, and a Dempsey whose emotional well is running dry with anger thriving.
I am so tired. Spent. Weak. Angry. Helpless. Mad at medical people- and there are MANY here.
Jake says he's doing "okay".
Dempsey has managed to eat yogurt and pizza with a little bit of water. We are praying and hoping that he keeps it down.
Dempsey is in quite a bit of pain. 😖 Our baby is so sick and pain comes with the territory. We are learning that life is going to get way harder and complicated.
Right now Jake and Nurse Jessica are getting Dempsey to take oral meds. He seems to be pretty positive right now despite his pain and fristration. He's talking to the nurse and conversing with her. I am hiding like a coward over in the sleeping section because I am so weak I will hinder the process that NEEDS to happen. I was doing well this morning but that quickly fled when today really got going.
I don't want to be here!! I don't want Dempsey to be here!! They keep telling me this is all normal and that everythivg will be okay. Excellent, children are suffering all over and I'm supposed to be glad that we have THIS cancer? What kind of logic is that? My baby is in pain and I can't help him. I'm supposed to trust dozens of people in scrubs whom I've never met about a condition I've never experienced at a hospital I've never been connected to all while believing they're helping my child.
Jake is being so strong and he's got strength I can't find anymore. He's so good at talking Dempsey through things that are tough when Dempsey cries and resists. Jake is so gentle with Dempsey and can muscle through Dempsey's cries of pain.
Just heard Dempsey argue with Jake and say "Ayeye". I want to help but I can't. I want to rescue but I can't. I want to trust but I can't. I want to believe but I can't. I want to hop but I can't. I want to leave but I can't. I want to stay but I can't. I want to encourage but I can't. I want to cry but I can't. I want to swear but I can't. I want to pray but I can't. I want to sleep but I can't. I want to live but I can't. I want to... BUT I CAN'T!!!!
No results yet...
Gratitude
Hi World,
I wanted to take this moment to attempt a conveyance of gratitude to ALL OF YOU from both of us (Jake and myself). We want you to know that we would not be standing or surviving if it wasn't for your prayers. Your support, generosity, love, words, etc are keeping us going. How do we know? Because we have no strength and yet we carry on, chasing hope through faith. You're doing that! You're carrying us when we are in shambles and you are filling us when we are depleted. We are grateful.
Our baby is sick and you LOVE him. You thought you loved him when he was well... but you LOVE him ever so much more, don't you? This is not a negative thing. It is a heart thing. It's a beautiful thing. I'm sorry if that sentiment doesn't come across via text. What I'm saying is that your love has been magnified exponentially under his cancer microscope. We love you for it.
We value YOU!! Each and every one of you. There is NO WAY we can reach of you personally, even though we want to. So please accept this entry (and any others like it) as us trying to grab your hand and tell you:
We love you. We need you. You are making a difference in our lives.
Sincerely,
Coral, Jake (& Sawyer)
I wanted to take this moment to attempt a conveyance of gratitude to ALL OF YOU from both of us (Jake and myself). We want you to know that we would not be standing or surviving if it wasn't for your prayers. Your support, generosity, love, words, etc are keeping us going. How do we know? Because we have no strength and yet we carry on, chasing hope through faith. You're doing that! You're carrying us when we are in shambles and you are filling us when we are depleted. We are grateful.
Our baby is sick and you LOVE him. You thought you loved him when he was well... but you LOVE him ever so much more, don't you? This is not a negative thing. It is a heart thing. It's a beautiful thing. I'm sorry if that sentiment doesn't come across via text. What I'm saying is that your love has been magnified exponentially under his cancer microscope. We love you for it.
We value YOU!! Each and every one of you. There is NO WAY we can reach of you personally, even though we want to. So please accept this entry (and any others like it) as us trying to grab your hand and tell you:
We love you. We need you. You are making a difference in our lives.
Sincerely,
Coral, Jake (& Sawyer)
Mom Thoughts
Heard from Jake about last night... He said it was rough but not horrible. Dempsey has an MRI scheduled for 10:30am and the bad news is it requires MORE anesthesia. We are not happy about that for several reasons, the first of which is HE HAS NO FOOD IN HIM since he threw up what little he did have up yesterday. The blessing of anesthesia is no fear, no anxiety, no awareness.
Just talked with Sawyer and my mom this morning. Sawyer is excited for day 3 of science camp and the LA Arboretum. That kid is being loved on in ways I couldn't have imagined. Thank you, Monica and family, for offering to handle this special treat for him. I filled him in on what Dempsey's day looks like today and let him ask me questions or tell me whatever he wanted. He is such a sweet, sweet boy. Mature beyond his years in many ways. Yesterday we had this (paraphrased) conversation:
S: If I get sick soon, you'll know God answered my prayer.
Me: Are you feeling sick?
S: No.
Me: Okay, then, what prayer?
S: That God would change Dempsey's sickness for mine.
Do y'all get what he's saying? My eight year old son is telling me that he has asked God to give HIM the sickness instead of Dempsey. Can you even......??
As I was processing with Carisa last night, I realized something- I asked for this journey. Not for cancer specifically but for what cancer means. For years I have been praying the following as part of my evening/ night time prayers with our family: "... give us a united Kingdom purpose..." Hello! Don't tell me God doesn't answer prayers. I've never seen a Kingdom purpose as crystal clear as what we're living through right now!! Don't let the how God answered my prayer stop your from praying because of fear, for whatever God brings to you he will get you through. Not quite how you think he should but how you ultimately need him to.
It's amazing how quickly feeling can leave a person's body. I mean, just gone... leaving numbness and a wake of wrought nerves.
Just talked with Sawyer and my mom this morning. Sawyer is excited for day 3 of science camp and the LA Arboretum. That kid is being loved on in ways I couldn't have imagined. Thank you, Monica and family, for offering to handle this special treat for him. I filled him in on what Dempsey's day looks like today and let him ask me questions or tell me whatever he wanted. He is such a sweet, sweet boy. Mature beyond his years in many ways. Yesterday we had this (paraphrased) conversation:
S: If I get sick soon, you'll know God answered my prayer.
Me: Are you feeling sick?
S: No.
Me: Okay, then, what prayer?
S: That God would change Dempsey's sickness for mine.
Do y'all get what he's saying? My eight year old son is telling me that he has asked God to give HIM the sickness instead of Dempsey. Can you even......??
As I was processing with Carisa last night, I realized something- I asked for this journey. Not for cancer specifically but for what cancer means. For years I have been praying the following as part of my evening/ night time prayers with our family: "... give us a united Kingdom purpose..." Hello! Don't tell me God doesn't answer prayers. I've never seen a Kingdom purpose as crystal clear as what we're living through right now!! Don't let the how God answered my prayer stop your from praying because of fear, for whatever God brings to you he will get you through. Not quite how you think he should but how you ultimately need him to.
It's amazing how quickly feeling can leave a person's body. I mean, just gone... leaving numbness and a wake of wrought nerves.
Blessings
Amid the enormous hurdles and violent curve balls there ARE blessings. Here are a few:
- community has rallied behind us
- delegation has gone smoothly thus far
- trustworthy help has been engaged
- Dempsey's spirits have remained high, although they have dipped today
- Sawyer is in great hands and is thriving... even whilst worrying about his little brother
- friends are stepping up to love and include Sawyer in their lives
- we are covered by hundreds, if not thousands, with prayer
- the staff/ team Dempsey has is amazing
- the methodology of this hospital is whole-istic; caring about the WHOLE person inside these pint-sized vessels
- open communication is KEY between the staff and parents; we feel listened to
- our house is being cared for
- our family is being cared for
- our souls are being cared for
- there are Christians on our hospital team
- the comments, texts, emails, smoke signals of love and encouragement we are receiving
- being able to SEE and TOUCH my coworkers today- does me good to be refueled by interaction
- words of hope regarding upcoming financial realities
- Dempsey can sleep
- Dempsey can smile and does
Wednesday, April 6, 2016
Little Man
His First BIG Day
Hello World!
I (Coral) am FINALLY focusing on writing out today's happenings and tidbits. So, grab some water and some tissue, You ready? Lets do this!
The morning was spent with Daddy because Mommy wet home last night, heeding the instruction of medical staff, to get quality sleep and handle some non-CHOC life stuffs. Did y'all know that life outside of CHOC keep plugging along whether you show up or not? Talk about rude.
Daddy was able to handle some work stuffs from the hospital room. Technology can be a real blessing. He is also using it to encourage me to put fuel in my body and hydrate. Such a thoughtful man.
Mommy was able to rest, regroup, feel productive AND even stop n at her work to have contact with a few of her people. Mommy came back to CHOC a little before Dempsey was set to be wheeled off on his Dempsey Mobile to pre-op on the 3rd floor.
He was busy playing on an ipad provided by Child Life as a distraction to notice he was given happy juice. It was fun to watch his head gain weight before our eyes and his eye lids start to fill with sand. Precious boy started gettin loopy and then they wheeled him off to surgery. Daddy and Mommy went and got a bite to eat until our pager went off and called us to post-op to see our sleeping angel.
Surgery went well. Praise God. He had a bone marrow aspiration and a spinal tap with some chemo.
He barely woke up for reals just now (6:30pm) after sleeping since 1:30pm or so. I am so grateful for all that sleep because it meant his pain level was so low as to not interfere with his sleep. Again, answer to prayer.
Dempsey slept for a long time. A really long time.
He woke up ready to eat and drink. So he did. A graham cracker and water. I went to give him Tylenol to help ease the pain he mentioned having and he threw up. My poor baby! He was a bit traumatized. Can you blame him? I'm now realizing that that could have been because of the chemo since he did so well coming off anesthesia yesterday. This mama was doing well up to that point. Now my nerves are all running amuck.
Currently he is all naked, snuggled under his little blanket distracted/ entertained by Ice Age 2 on the portable DVD player Granddad brought him.
Prayer requests:
I (Coral) am FINALLY focusing on writing out today's happenings and tidbits. So, grab some water and some tissue, You ready? Lets do this!
The morning was spent with Daddy because Mommy wet home last night, heeding the instruction of medical staff, to get quality sleep and handle some non-CHOC life stuffs. Did y'all know that life outside of CHOC keep plugging along whether you show up or not? Talk about rude.
Daddy was able to handle some work stuffs from the hospital room. Technology can be a real blessing. He is also using it to encourage me to put fuel in my body and hydrate. Such a thoughtful man.
Mommy was able to rest, regroup, feel productive AND even stop n at her work to have contact with a few of her people. Mommy came back to CHOC a little before Dempsey was set to be wheeled off on his Dempsey Mobile to pre-op on the 3rd floor.
He was busy playing on an ipad provided by Child Life as a distraction to notice he was given happy juice. It was fun to watch his head gain weight before our eyes and his eye lids start to fill with sand. Precious boy started gettin loopy and then they wheeled him off to surgery. Daddy and Mommy went and got a bite to eat until our pager went off and called us to post-op to see our sleeping angel.
Surgery went well. Praise God. He had a bone marrow aspiration and a spinal tap with some chemo.
He barely woke up for reals just now (6:30pm) after sleeping since 1:30pm or so. I am so grateful for all that sleep because it meant his pain level was so low as to not interfere with his sleep. Again, answer to prayer.
Dempsey slept for a long time. A really long time.
He woke up ready to eat and drink. So he did. A graham cracker and water. I went to give him Tylenol to help ease the pain he mentioned having and he threw up. My poor baby! He was a bit traumatized. Can you blame him? I'm now realizing that that could have been because of the chemo since he did so well coming off anesthesia yesterday. This mama was doing well up to that point. Now my nerves are all running amuck.
Currently he is all naked, snuggled under his little blanket distracted/ entertained by Ice Age 2 on the portable DVD player Granddad brought him.
Prayer requests:
- for MIRACULOUS HEALING
- for NO PAIN
- for no negative reactions to drugs he's being given
- for courage
- for peace and comfort of all kinds
- for his mind to delete the awful memories he might obtain through all of these new experiences
- for wisdom as Jake and I share with him what is happening
- for wisdom as Jake and I make decisions about Dempsey's treatment
- that God would guide our thoughts and decisions on the right course
- that we would see God's provision in even the smallest of ways moment to moment
- that the results from today's biopsies will be as positive as they can be and give us the diagnosis of A-L-L (acute lymphoblastic/ lymphocytic leukemia)
- that God is orchestrating Dempsey's team here at CHOC and guiding them to the right course of treatment for our baby
- for strength, for all of us
- that we will be mindful and discerning to Sawyer, his desires and needs
- for productive rest for all of us
- that Dempsey will be able to keep nutrients and water down so he can keep up physical strength
- that I (Coral) will eat/ drink enough to maintain health
- that Jake and I will manage our self-care in such a way as to protect us from getting sick
- that we can let others help where and when we need to
**Sorry for the long gap between posts... I've ben trying to finish this post for almost 4 hours.
Pray Over Wednesday | 04-06-2016
Wednesday is a BIG procedure day. Dempsey will be sedated so that both a bone marrow biopsy and spinal tap can be performed. This is wicked scary for me (and Jake, too, I assume). I praise God that my baby will be sedated and that they say the pain is minimal post-procedure.
Please pray that our baby will feel NO PAIN post-surgery.
Pray that his MIND is protected and that he will NOT REMEMBER anything negative.
Pray that the doctors have steady hands and that the anesthesiologist is laser-focused and accurate with their drugs.
Pray for our mommy and daddy hearts.
We are ripped open, exposed, each time a procedure (even small ones) is executed on our baby. Our nerves are so wracked they don't know which way is up.
The good to come from Wednesday's big procedures- RESULTS. These tests will bring us one day closer to knowing exactly what Dempsey has and then we PLAN and EXECUTE the plan. This is HUGE.
More on that later... it's 01:30 and I'm spent.
Coral
Please pray that our baby will feel NO PAIN post-surgery.
Pray that his MIND is protected and that he will NOT REMEMBER anything negative.
Pray that the doctors have steady hands and that the anesthesiologist is laser-focused and accurate with their drugs.
Pray for our mommy and daddy hearts.
We are ripped open, exposed, each time a procedure (even small ones) is executed on our baby. Our nerves are so wracked they don't know which way is up.
The good to come from Wednesday's big procedures- RESULTS. These tests will bring us one day closer to knowing exactly what Dempsey has and then we PLAN and EXECUTE the plan. This is HUGE.
More on that later... it's 01:30 and I'm spent.
Coral
End of Day 2
As I sit at home, I am reflecting on the rest of the day, post-op. Here are the blessings:
- I had several wonderful hours with our Dempsey boy
- His ear pain was managed with just Tylenol
- His labs are showing marked improvement
- His attitude was much more in line with WHO Dempsey IS... as we've always known him
- Bath was tough, but a success and helped him feel clean and good
- He slept, and slept, and slept post-op which I believe was a great benefit to all of us
- Jake was able to be away from the hospital for several hours to handle non-CHOC life of his own, shower, process, etc
- Granny and Granddad (Coral's parents) visited TWICE; one of those times they brought our Sawyer, an absolute treat to spend time together as a family for the first time since life jumped tracks.
- Sawyer was loved, cared & provided for my grandparents and a SUPER GENEROUS friend who took Sawyer, along with her kiddos, to the LA Arboretum's Science Camp. This was Day 1 and she conveyed that Sawyer liked it "medium". He cracks me up! Her too.
- Jake was able to spend time with Sawyer and the grandparents this evening over dinner and just time together. I'm sure it did him good.
- Jessica, our day nurse, spoke to Dempsey over the intercom and he responded... totally without parental help and it was a correct and short exchange. Perfection. This shows a level of trust between Dempsey and Jessica and that he is comfortable enough there (bittersweet reality).
- A team effort was had at building the Lego set containing the all-important Bat Mobile that Bryan G lovingly supplied. Can't wait to tackle the other sets he blessed Dempsey with as well.
- Carisa (my bestie) and her husband Chad came to visit and brought a psyche-saving drink (Chai Frap) from Starbucks and we had some good time together, although Jake was gone for that.
- We are learning. A lot. That can never be a bad thing.
The struggles since the ear tube surgery:
- Being limited in bath time activity- Dempsey has to have his hands covered in such a way as to protect all his IVs ("power cords"- my terminology to make this as fun as possible) and that limits mobility and such.
- Painful removal of tape that was helping to protect "power cords" but was "super big owie" to take off.
- The need for oral meds... I think this is because he tested positive for Influenza B.
- Room visitors had to wear masks- thankfully not gowns too
- Trying not to live too much in fear of what tomorrow (today, Wednesday) holds
- Our schedule being thrown completely for a loop
As you can see, it seems that the good outweighs the bad for the rest of the day post-op.
Lord, we are grateful for the blessings you have provided and continue to place in our path. I pray that we have the eyes to see them, the heart to receive them, and the appreciation that they deserve. I pray that we will be emotionally appropriate and real throughout this journey. I ask that you help us be strong for Dempsey always but not at the expense of honesty and truth. I pray that we will remain his refuge and his advocates/ defenders while balancing his budding independence in his own journey. I ask that the doctors you provide for us will always respect our wishes and that there is not a misplaced ego anywhere. Keep us teachable and discerning. Guide our steps, our words, our thoughts. Protect our baby. Protect our hearts, our marriage, our minds, our bodies. Help us to lean on each other as we lift our eyes toward Heaven for guidance. May we always shine YOUR light and touch those who need it. Help us to never miss a Divine appointment moment because of self-pity. We give you mountains of thanks and praise for the way you have mobilized your Body to rally around us. It is humbling, heart-wall crumbling, awe shoveling. Amen
Tuesday, April 5, 2016
Ear Tubes- complete post
** the whole post was not submitted previously**
Pre and post op. My baby is in enough pain they gave him MORPHINE! What the hell? This was supposed to be a simple procedure and was supposed to relieve his pain, not cause even more. How do I tell him I lied to him?
Yes, there was some relief for his right ear but his left is still dealing with infection and pain. His right ear received a tube, his left did not. His left ear still has an incision but with the severity of swelling of his ear canal the tube wasn't able to be placed. Pray that this works and that the drops they'll give him eliminate all infection and resolve all pain NOW.
Oh lord the beeping of machines and the smell of this hospital is nauseating.
Pray that my skin thickens and that I don't forget how to breathe. I feel like just as he begins to strengthen and thrive they knock him down again.
Tomorrow brings even more procedures, drigs, pokes, and prods.
I'm a mess. I'm sure Jake is too but he holds it together better than I do.
I beg you all to keep praying for Dempsey and our family.
**As of 5:30pm Dempsey is still sleeping off the anesthesia and morphine. The only reason I want to wake him is because it has been 18 hrs since he ate last.
Pre and post op. My baby is in enough pain they gave him MORPHINE! What the hell? This was supposed to be a simple procedure and was supposed to relieve his pain, not cause even more. How do I tell him I lied to him?
Yes, there was some relief for his right ear but his left is still dealing with infection and pain. His right ear received a tube, his left did not. His left ear still has an incision but with the severity of swelling of his ear canal the tube wasn't able to be placed. Pray that this works and that the drops they'll give him eliminate all infection and resolve all pain NOW.
Oh lord the beeping of machines and the smell of this hospital is nauseating.
Pray that my skin thickens and that I don't forget how to breathe. I feel like just as he begins to strengthen and thrive they knock him down again.
Tomorrow brings even more procedures, drigs, pokes, and prods.
I'm a mess. I'm sure Jake is too but he holds it together better than I do.
I beg you all to keep praying for Dempsey and our family.
**As of 5:30pm Dempsey is still sleeping off the anesthesia and morphine. The only reason I want to wake him is because it has been 18 hrs since he ate last.
The Journey | Glimers of Hope
Jessica, our nurse, just told is that she returned the last blood pouch (for transfusion) because Dempsey DID NOT NEED IT!! This is a miracle and I'll take it!
Dempsey's blood levels had been steadily increasinng. He was "surviving" on a level of 4 and it increased to 5... then 6... then with the last transfusion he jumped to a level of 9!!!
Dempsey's blood levels had been steadily increasinng. He was "surviving" on a level of 4 and it increased to 5... then 6... then with the last transfusion he jumped to a level of 9!!!
Ponderings
I (Coral) am sitting here thinking. A dangerous thing at present. My baby is asleep in a bed, not his bed, in a room, not his room, in a building that is not his home.
I just want to take him home. I want to absorb this illness from him and let him get back to just being a healthy kid.
There is HOPE that we will not live in this room for the 3+ yrs of treatment. Sherry, the recent night nurse/ hematologist said that he will probably be staying in hospital for a month. A month of a 3+ yr journey seems like such small potatoes... except for the fact that the days are LONG here and full of people interrupting sleep and procedures await. Trying so hard to take it one day at a time while still preparing for a long journey.
I just want to see my baby run again. I want to his real smile again. I want to have immense faith but a mustard seed seems huge right now.
I wonder when I will meet our new family. The family of other 5th floor residents. I'm not sure I'm ready for that yet.
Lord,
We know you designed Dempsey with this journey as part of his life. Help us walk it with him well. I pray for miraculous/ spontaneous healing. I pray, but I doubt. I am still looking to Heaven from my back on the floor because you pulled the rug from beneath me. I resent you for that. I want to be positive and faith-filled but I'm angry at you. I'm trying to bring you glory and believe that you are in this... it's hard. My heart knows you are good and faithful and with us but my mind questions that. You tell us "rain falls on the righteous and unrighteous alike" and right now I find little comfort in that. I want to raise my "righteous" flag and scream like the Pharisees. Help me to be humble and remain teachable. It hurts, God. The refining fire you have me in hurts!! I keep trying to hold on to the image of purified GOLD. I want to be that gold but without the purification process. How human. I want your blessings of joy but not your trials that bring joy into focus. I want, I want, I want... Help me to remember the balance of what I "need". I need to be faithful. I need to trust. I need to lean on you. I need to submit. I need to wash with the Word- so please guide me to the right scriptures. I need to pray and talk to you. I need to be honest, real. Help me be just who and what I'm supposed to be each minute of each hour of each day of each week of each month of each year, etc. Amen
I just want to take him home. I want to absorb this illness from him and let him get back to just being a healthy kid.
There is HOPE that we will not live in this room for the 3+ yrs of treatment. Sherry, the recent night nurse/ hematologist said that he will probably be staying in hospital for a month. A month of a 3+ yr journey seems like such small potatoes... except for the fact that the days are LONG here and full of people interrupting sleep and procedures await. Trying so hard to take it one day at a time while still preparing for a long journey.
I just want to see my baby run again. I want to his real smile again. I want to have immense faith but a mustard seed seems huge right now.
I wonder when I will meet our new family. The family of other 5th floor residents. I'm not sure I'm ready for that yet.
Lord,
We know you designed Dempsey with this journey as part of his life. Help us walk it with him well. I pray for miraculous/ spontaneous healing. I pray, but I doubt. I am still looking to Heaven from my back on the floor because you pulled the rug from beneath me. I resent you for that. I want to be positive and faith-filled but I'm angry at you. I'm trying to bring you glory and believe that you are in this... it's hard. My heart knows you are good and faithful and with us but my mind questions that. You tell us "rain falls on the righteous and unrighteous alike" and right now I find little comfort in that. I want to raise my "righteous" flag and scream like the Pharisees. Help me to be humble and remain teachable. It hurts, God. The refining fire you have me in hurts!! I keep trying to hold on to the image of purified GOLD. I want to be that gold but without the purification process. How human. I want your blessings of joy but not your trials that bring joy into focus. I want, I want, I want... Help me to remember the balance of what I "need". I need to be faithful. I need to trust. I need to lean on you. I need to submit. I need to wash with the Word- so please guide me to the right scriptures. I need to pray and talk to you. I need to be honest, real. Help me be just who and what I'm supposed to be each minute of each hour of each day of each week of each month of each year, etc. Amen
The Journey | Morning of Day 2
It's really nice, as hospital rooms go.
The hall is starting to buzz and the sun is beckoning us to wake.
Jake seems to have slept decently. My sleep will be in chunks.
The hall is starting to buzz and the sun is beckoning us to wake.
Jake seems to have slept decently. My sleep will be in chunks.
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