There are no words needed.
Sunday, April 30, 2017
Saturday, April 29, 2017
20 seconds
Brennon had his ENT appointment on Wednesday. Randy told me back in March that when he'd made the appointment, they told him that they had moved. I always print out a very detailed daily itinerary when people come to watch our kids, complete with leave times to arrive a few minutes early, appointment times in parenthesis, and addresses for every place she'll need to drive to, to make things just a little easier to plan the day. When making it up this time, I googled the doctor's name in search of his new address. Since it was a different address than the last time we went to him, I put that one down. Jackie arrived at the appointed place- a few minutes early- only to hear that they'd moved. Again. Last month. (Three different addresses in two years) And since she doesn't know that part of Richland, she had to call me for directions, which made me super anxious that things were so stressful for her. Of Course they had moved last month! When times are stressful at the Dirks' home, they are stress-ful!
After taking Brennon to Kadlec Express for the second time over Spring Break, it dawned on me that I only look for ways to help his pain, never for ways to clear the eustachian tubes. After 15 years of ear problems with four of my kids, I actually cannot fathom why it hasn't dawned on me before. I went onto Pinterest in search of natural remedies to clear them. The very first thing to pop up was a video of a doctor showing you a way to clear them. It was as if he was speaking directly to my heart-- I just knew this had to work.
{The 20-second cure:} Take both ear lobes and pull them straight out (not tugged down), so they are parallel with the shoulder. While doing this, open your mouth wide and then jut your chin as forward as you can. Alternate these two motions, all the while holding your lobes out, for twenty seconds. Do this daily and you'll keep your tubes clear.
I sat there in silence after the video, wondering why the heck I had never thought to try and fix the problem, instead of just fixing the pain. 15 years of ear problems, and it had never occurred to me. How do I function as a mother again?
That night I was a mom on a mission. I had Brennon do it many times that night, probably 25 times. I also took a vibrating wand and massaged the tubes (which I thought ran down the back of the neck from the ear, but actually run from the ear to the nose. Again, 15 years of being wrong) to get the fluids warm and moveable. While doing this for about 15 minutes, Brennon jerked. Hard. "Mom, it just POPPED!" I continued to massage his face and neck, skeptical that it could have worked that same day, and so fast. When I asked him to do it again the next morning, he asked, "Why? Don't you remember that it popped? I can hear again!" I thought we were all clear forever more, but when his headaches started up again last week, I was back to thinking that his ears were still clogged, so I kept the appointment time.
Nope!!! Everything was clear. I am a believer in the "20-second cure." I've had him do it daily, so I hope that he can get into the habit of clearing the tubes so that we never have to go through this ENT stuff again. His headaches were most likely allergy related. But, being so close to all of the ear stuff that has been plaguing him since his birthday in February, I just reverted back to blaming the ears. No tubes. No surgery. No medications. Just clear ears and a happy mom... who also feels a bit guilty that the appointment ended up being useless after the moving fiasco.
Just so you know: The 20'second cure can be used for sinus stuff as well as ear stuff. Since they are all interconnected, do it when you are feeling stuffy. I love stuff like this!
After taking Brennon to Kadlec Express for the second time over Spring Break, it dawned on me that I only look for ways to help his pain, never for ways to clear the eustachian tubes. After 15 years of ear problems with four of my kids, I actually cannot fathom why it hasn't dawned on me before. I went onto Pinterest in search of natural remedies to clear them. The very first thing to pop up was a video of a doctor showing you a way to clear them. It was as if he was speaking directly to my heart-- I just knew this had to work.
{The 20-second cure:} Take both ear lobes and pull them straight out (not tugged down), so they are parallel with the shoulder. While doing this, open your mouth wide and then jut your chin as forward as you can. Alternate these two motions, all the while holding your lobes out, for twenty seconds. Do this daily and you'll keep your tubes clear.
I sat there in silence after the video, wondering why the heck I had never thought to try and fix the problem, instead of just fixing the pain. 15 years of ear problems, and it had never occurred to me. How do I function as a mother again?
That night I was a mom on a mission. I had Brennon do it many times that night, probably 25 times. I also took a vibrating wand and massaged the tubes (which I thought ran down the back of the neck from the ear, but actually run from the ear to the nose. Again, 15 years of being wrong) to get the fluids warm and moveable. While doing this for about 15 minutes, Brennon jerked. Hard. "Mom, it just POPPED!" I continued to massage his face and neck, skeptical that it could have worked that same day, and so fast. When I asked him to do it again the next morning, he asked, "Why? Don't you remember that it popped? I can hear again!" I thought we were all clear forever more, but when his headaches started up again last week, I was back to thinking that his ears were still clogged, so I kept the appointment time.
Nope!!! Everything was clear. I am a believer in the "20-second cure." I've had him do it daily, so I hope that he can get into the habit of clearing the tubes so that we never have to go through this ENT stuff again. His headaches were most likely allergy related. But, being so close to all of the ear stuff that has been plaguing him since his birthday in February, I just reverted back to blaming the ears. No tubes. No surgery. No medications. Just clear ears and a happy mom... who also feels a bit guilty that the appointment ended up being useless after the moving fiasco.
Just so you know: The 20'second cure can be used for sinus stuff as well as ear stuff. Since they are all interconnected, do it when you are feeling stuffy. I love stuff like this!
Friday, April 28, 2017
To Randy:
There is a side of cancer care that is not really talked about much, but is just as difficult to witness as the horrible side effects that chemo and radiation bring. It is the suffering of the working parent. When we are in Seattle, I have already passed off my "job" to someone that I know, trust, and love. I give instructions in all areas for how to take care of my other kids, make sure that everything is in order in the home, and then I pretty much leave half of my heart and 1/4 of my thoughts in Richland-- the rest of me is given to Caden's care. I am wholly committed to giving my whole self to caring for The Boy in the Bed.
But I would like you to imagine for a moment how things are for Randy. His job cannot be given to anyone else-- he is still responsible for seven mouths to feed, seven bodies to clothes, seven heads to cover each night with a roof. It is also Randy's personality to give his 110% best in every single thing that he does, whether it be marriage, parenthood, church, or work. He can't just do his job at 50%, it's not in his nature. So he worries over work every single minute of the day. Always.
But he also has four kids at home that are struggling. Their lives are filled with horrors and stresses that no child should ever have to endure. Sure this is the third year, so it has become more known and commonplace, but it never makes it easier when cancer is the cause of the suffering. Each of them has cried many times to me, saying they are scared their brother is going to die. They are more used to Randy being gone for work, but it is really hard for them to have me gone. I am very much a visible constant in their lives, as it should be. So, Randy has spent more time at home with them when he can. He is trying to step in more, to give them more "parent" this time.
But his wife and son are struggling (sometimes) and living alone in Seattle. On his 40th birthday, Randy had to be miles away from home and from Seattle at a Demo, while his son started his first immunotherapy trial. He was not there to be Caden's support. He was not physically there to be my support, even though he desperately wanted to be. He went to work. He worked it hard. He did his best, gave his 110%. While his heart was with me. And Caden. And Keilie, Shelby, Brennon, and Tyson. He takes care of me in every single way, so it hurt knowing that I was doing this alone. It hurt knowing that he wasn't there to hold me close as I watched our son quickly crash. He can't stop earning money. We can't live off of our love, no matter how much we wish we could. We need him to work.
So, this amazing man that asked me to be his, keeps working. He is needed in so many different places, but he can't be everywhere. No one can take his place. He can't give his whole self to just one thing. He can't choose what he wants most. He has to do everything for everyone else. And he is tired. And he is emotionally spent. And he hurts for us all. And he just keeps working to provide.
To Randy:
I see you. I know how you are suffering. I know how much you hurt. I know how hard this has been for you. I wish I could take it all from you. It is agony watching you suffer so much, to see you stretched so thin. It is hard for me to witness both of my men's suffering, both physical and emotional. I appreciate all that you do for me. Your emotional support means as much to me as your physical support. I know you love and worry about me. You are my white-knight protector. I am so eternally grateful for your sacrifice. You are loved and adored beyond your wildest dreams. I love you with my whole soul.
I love you,
Steph
But I would like you to imagine for a moment how things are for Randy. His job cannot be given to anyone else-- he is still responsible for seven mouths to feed, seven bodies to clothes, seven heads to cover each night with a roof. It is also Randy's personality to give his 110% best in every single thing that he does, whether it be marriage, parenthood, church, or work. He can't just do his job at 50%, it's not in his nature. So he worries over work every single minute of the day. Always.
But he also has four kids at home that are struggling. Their lives are filled with horrors and stresses that no child should ever have to endure. Sure this is the third year, so it has become more known and commonplace, but it never makes it easier when cancer is the cause of the suffering. Each of them has cried many times to me, saying they are scared their brother is going to die. They are more used to Randy being gone for work, but it is really hard for them to have me gone. I am very much a visible constant in their lives, as it should be. So, Randy has spent more time at home with them when he can. He is trying to step in more, to give them more "parent" this time.
But his wife and son are struggling (sometimes) and living alone in Seattle. On his 40th birthday, Randy had to be miles away from home and from Seattle at a Demo, while his son started his first immunotherapy trial. He was not there to be Caden's support. He was not physically there to be my support, even though he desperately wanted to be. He went to work. He worked it hard. He did his best, gave his 110%. While his heart was with me. And Caden. And Keilie, Shelby, Brennon, and Tyson. He takes care of me in every single way, so it hurt knowing that I was doing this alone. It hurt knowing that he wasn't there to hold me close as I watched our son quickly crash. He can't stop earning money. We can't live off of our love, no matter how much we wish we could. We need him to work.
So, this amazing man that asked me to be his, keeps working. He is needed in so many different places, but he can't be everywhere. No one can take his place. He can't give his whole self to just one thing. He can't choose what he wants most. He has to do everything for everyone else. And he is tired. And he is emotionally spent. And he hurts for us all. And he just keeps working to provide.
To Randy:
I see you. I know how you are suffering. I know how much you hurt. I know how hard this has been for you. I wish I could take it all from you. It is agony watching you suffer so much, to see you stretched so thin. It is hard for me to witness both of my men's suffering, both physical and emotional. I appreciate all that you do for me. Your emotional support means as much to me as your physical support. I know you love and worry about me. You are my white-knight protector. I am so eternally grateful for your sacrifice. You are loved and adored beyond your wildest dreams. I love you with my whole soul.
I love you,
Steph
Thursday, April 27, 2017
Decision
Caden has been feeling great. Normal even. Except for the reaction (which is still quite fresh and scary in my mind), Caden hasn't felt any different than he normally does. This is a wonderfully unexpected thing. It feels so weird knowing that we are fighting, but that he doesn't feel incredibly sick. It's wonderful, but it also makes it really hard to stay in Seattle. It is suffocating. And lonely. And boring. We truly just want to be home with our family. It's easier to appreciate Seattle Children's when the professionals are needed to watch over my son. Because he feels so well, Seattle feels like a prison, keeping us from living life.
I think both of my Dads knew what was going through my lonely head when they cautioned me not to sneak Caden home again, each with different sides that are completely true. My own Dad said that if Caden's body decided to reject the medication at any time and we were not close when it happened, I'd never be able to forgive myself. My other Dad (in-law) said that we didn't want any excuse to be dropped from The Study, since it was parameters for The Study that we stay close. I hadn't thought of either of those reasons, since my mind and body just wanted to be together while Caden feels well. But I whole-heartedly agree with them both. We will not be sneaking home again-- we'll wait until they release us. I am at peace with the decision, but it doesn't make it easier. I miss our amazing life. I'm super grateful that he's feeling well and that we get this opportunity and blessing, but I am a selfish being that wants my cake and to eat it too.
On the very morning that Randy and I agreed that we would not sneak again, I saw a meme that I know I was meant to see at that very moment. It was a picture of Jesus kneeling in Gethsemane. "When times are difficult, remember, you are not the first to ask, "Is there no other way?"
I think both of my Dads knew what was going through my lonely head when they cautioned me not to sneak Caden home again, each with different sides that are completely true. My own Dad said that if Caden's body decided to reject the medication at any time and we were not close when it happened, I'd never be able to forgive myself. My other Dad (in-law) said that we didn't want any excuse to be dropped from The Study, since it was parameters for The Study that we stay close. I hadn't thought of either of those reasons, since my mind and body just wanted to be together while Caden feels well. But I whole-heartedly agree with them both. We will not be sneaking home again-- we'll wait until they release us. I am at peace with the decision, but it doesn't make it easier. I miss our amazing life. I'm super grateful that he's feeling well and that we get this opportunity and blessing, but I am a selfish being that wants my cake and to eat it too.
On the very morning that Randy and I agreed that we would not sneak again, I saw a meme that I know I was meant to see at that very moment. It was a picture of Jesus kneeling in Gethsemane. "When times are difficult, remember, you are not the first to ask, "Is there no other way?"
Wednesday, April 26, 2017
Week 2✔️✔️
I am not an overly superstitious person, but I didn't post an update yesterday because it felt like every time I posted last week, he'd turn around and have something horrible happen. So I stayed quiet in hope that it would be good luck. And it was!!
We arrived at 7:50am for the two IV's, blood work, urinalysis, and pre-medications. After all of that, he was finally hooked up and started on the Miracle Drug at 11:00am. The moment everything was secured, Caden asked if he could go to the bathroom. As she was unplugging the IV pole stuff, it set off an alarm, calling everyone to his room. Because everyone was on high-alert for another reaction, it ended up being a big deal. She was frantically pressing buttons to disengage the alarm as she was yelling that we did not need help. Sue was in with another family, but came frantically running to Caden's room when she heard the call. After everyone was calmed down from the adrenaline high, we all joked that that was the only time it would happen in the day, that we just needed to get it out of our system. Good news: it never happened again-- he did great at the slower infusion rate!!!
We finished everything at 3:00pm, waited for an hour for any reaction symptoms, and came back to our Ronald McDonald room for a great night. He slept through the night, woke to work on some school work, and we went for a few hours' play at IKEA. It has been an amazing two days!!!!!! We are so hopeful!!! Week 2✔️✔️
I'm the luckiest girl in the world!!
We arrived at 7:50am for the two IV's, blood work, urinalysis, and pre-medications. After all of that, he was finally hooked up and started on the Miracle Drug at 11:00am. The moment everything was secured, Caden asked if he could go to the bathroom. As she was unplugging the IV pole stuff, it set off an alarm, calling everyone to his room. Because everyone was on high-alert for another reaction, it ended up being a big deal. She was frantically pressing buttons to disengage the alarm as she was yelling that we did not need help. Sue was in with another family, but came frantically running to Caden's room when she heard the call. After everyone was calmed down from the adrenaline high, we all joked that that was the only time it would happen in the day, that we just needed to get it out of our system. Good news: it never happened again-- he did great at the slower infusion rate!!!
I'm the luckiest girl in the world!!
Sunday, April 23, 2017
Sneak
Because Caden has been feeling so well, we broke the cardinal rule set down by Doctor Hawkins: "Stay within a 1-hour radius of Seattle Children's Hospital." We quietly sneaked (I tried "Snuck" and it said it was wrong. Sneaked feels so wrong. Don't judge my grammar too harshly. I'm not right in the head these days. Or ever.) home for a quick day visit. Randy is the only one that knew about it, so when the kids and Jackie walked in from church, we met them with open arms. We got the exact reaction we were hoping for: tears and joyous squeals and hugs. It was well worth the drive. Caden has felt well --normal, even-- since his reactions on Tuesday, but to see him home with his family and Mira, I can already see a change. Truly, together is the best thing for healing.
We do see evidence that his immune system is working-- he's more rundown and tired. He doesn't just sit around, but he is sitting more than his usual bustle. We sure hope that Tuesday works at the slower infusion rate. I'm not sure I've felt this much hope for a long, long time. I want this to work so, so much. Maybe sneaking home will raise his spirits enough to help his body accept the medication. Yes, let's say that. "Doctor Hawkins, breaking the rules was the surest way for this trial to work!" They'll probably add it to The Study protocol forever more! Maybe I'll be known as Rule Maker, not Rule Breaker.
~~~~~~~~~~~~~~~~~~~~~~~~~
This happened while my parents were visiting for Spring Break, but I keep forgetting to add it, and I don't want to forget it.
Brennon was finishing his cereal with milk mid-morning snack, and just kept spooning and spooning the milk into his mouth at a vigorous rate.
Grandpa Wayne: "Brennon, you do know that you can just drink the milk, right?"
Brennon Wayne: "Well, it just tastes better when I do it like this."
And now you know.
We do see evidence that his immune system is working-- he's more rundown and tired. He doesn't just sit around, but he is sitting more than his usual bustle. We sure hope that Tuesday works at the slower infusion rate. I'm not sure I've felt this much hope for a long, long time. I want this to work so, so much. Maybe sneaking home will raise his spirits enough to help his body accept the medication. Yes, let's say that. "Doctor Hawkins, breaking the rules was the surest way for this trial to work!" They'll probably add it to The Study protocol forever more! Maybe I'll be known as Rule Maker, not Rule Breaker.
~~~~~~~~~~~~~~~~~~~~~~~~~
This happened while my parents were visiting for Spring Break, but I keep forgetting to add it, and I don't want to forget it.
Brennon was finishing his cereal with milk mid-morning snack, and just kept spooning and spooning the milk into his mouth at a vigorous rate.
Grandpa Wayne: "Brennon, you do know that you can just drink the milk, right?"
Brennon Wayne: "Well, it just tastes better when I do it like this."
And now you know.
Saturday, April 22, 2017
Growth
April 19, 2016
October 19, 2016
April 18, 2017
Not the angle I wanted, but I forgot to get one for Before and Afters. You can see that it is evenly grown to my chin. Well sort of see it, anyway. One year of growth.
I have never regretted my choice to cut my hair for Locks of Love, nor do I regret trying the Pixie Cut. However, I did not like that cut. Not one time did I feel pretty. Not one day did I think, "Yeah, this doesn't look too bad." I just did not like the cut one me. I even questioned when people would tell me that they liked it. I always wondered if they were so startled by the cut that they quickly covered their pity-shock with words of love, to make me feel better. It just wasn't my favorite. I waited every day for it to grow, anxious to get out of the awkward stage. And now it has. From here on out, I'll love the length of my hair. I continue to be grateful for my choice.
Friday, April 21, 2017
Week 1✔️
Since Randy was here today, he took Caden to his appointment. I stayed back and worked on a quilt for my cousin's baby girl. Figures that the one appointment I don't attend produces the most updated news!!
1. This Study has been going for more than one year. They just barely opened it up to children in January.
2. Out of the 135 patients, only 4% have reactions like Caden's. Man, I especially love hearing that Caden continues to be unique. Love him to death, but I wouldn't mind him being like others in this.
3. He was the first child to trial it at Seattle Children's. Another child started the next day. They did not have a reaction. Again, unique.
4. Caden is the only patient ever to have documented reaction symptom of scratchy throat and swelling tongue. Wonderful!
5. The results are trending across all patients that this immunotherapy could surpass a more publicly known immunotherapy in cure rates. Since Randy was the one that heard it, he probably has the correct therapy, but I think he said PD-L1? Anyway, we now understand why our doctor has said "it is a very promising study." We are praying so hard that the slower rate on Tuesday will work, giving this medication more time. I'm not giving up hope just yet that this could be our Miracle.
Today's appointment went as planned, and without any stress. We are done with the hospital until Tuesday at 7:50am. To celebrate, we went to the movie Born in China. Cutest baby animals ever!!! I'm excited for the break, but I am also counting down to Tuesday. Guess I'll have to fill the hours beating my son at cards! It's a hard life, but someone's gotta do it!
1. This Study has been going for more than one year. They just barely opened it up to children in January.
2. Out of the 135 patients, only 4% have reactions like Caden's. Man, I especially love hearing that Caden continues to be unique. Love him to death, but I wouldn't mind him being like others in this.
3. He was the first child to trial it at Seattle Children's. Another child started the next day. They did not have a reaction. Again, unique.
4. Caden is the only patient ever to have documented reaction symptom of scratchy throat and swelling tongue. Wonderful!
5. The results are trending across all patients that this immunotherapy could surpass a more publicly known immunotherapy in cure rates. Since Randy was the one that heard it, he probably has the correct therapy, but I think he said PD-L1? Anyway, we now understand why our doctor has said "it is a very promising study." We are praying so hard that the slower rate on Tuesday will work, giving this medication more time. I'm not giving up hope just yet that this could be our Miracle.
Today's appointment went as planned, and without any stress. We are done with the hospital until Tuesday at 7:50am. To celebrate, we went to the movie Born in China. Cutest baby animals ever!!! I'm excited for the break, but I am also counting down to Tuesday. Guess I'll have to fill the hours beating my son at cards! It's a hard life, but someone's gotta do it!
Thursday, April 20, 2017
Immuno Day 3
Today was a much better day for Caden. He woke refreshed, ate every single one of his snacks, only needed one poke which he did not feel because we had numbing cream on multiple places, and was done with all appointments within two hours. He felt well enough to catch up on work in Spanish, Seminary, and started on his Math. And he's beat me twice at our card game. It was a much better day all around.
While waiting for his EKG, he filled out a survey for another study he's been enrolled in for one year. It is actually questionnaires to see how his cancer diagnosis has affected him as a youth. I've helped him fill out two of these now, both at different times along the way, but I still feel so surprised by some of his answers. He answered that he "sometimes" fears he's a burden to his family. He said he "rarely" worries if treatments are working. He "never" feels hopeless. He "almost never" feels sorry when getting a procedure. He "absolutely" feels stronger because of his cancer. And cancer has brought our family closer together "a little."
"We have always been really close."
All of the answers were split-second decisions. He is telling the truth-- he does not feel hopeless, even after all that he's been through. He doesn't worry wether it's working, his thoughts are on living during the treatments. Man, this kid amazes me. I had to stop myself from staring in shock at so many of the answers. He really is the epitome of courage and strength.
While waiting for his EKG, he filled out a survey for another study he's been enrolled in for one year. It is actually questionnaires to see how his cancer diagnosis has affected him as a youth. I've helped him fill out two of these now, both at different times along the way, but I still feel so surprised by some of his answers. He answered that he "sometimes" fears he's a burden to his family. He said he "rarely" worries if treatments are working. He "never" feels hopeless. He "almost never" feels sorry when getting a procedure. He "absolutely" feels stronger because of his cancer. And cancer has brought our family closer together "a little."
"We have always been really close."
All of the answers were split-second decisions. He is telling the truth-- he does not feel hopeless, even after all that he's been through. He doesn't worry wether it's working, his thoughts are on living during the treatments. Man, this kid amazes me. I had to stop myself from staring in shock at so many of the answers. He really is the epitome of courage and strength.
Wednesday, April 19, 2017
Immune Day 2
We were able to get to bed at 11:00pm. And let me just say, they could have offered me a spot on the floor and it would have felt like a feather bed-- I was READY to pass out! We had a great night. We were discharged at 11:30am, just in time for his blood work and EKG appointment at noon. The EKG went fine, with all three tests coming out normal, but the blood work made us both want to run.
Like yesterday, his veins did not like what we were doing. The second IV that he still had would not draw blood, so we went into the appointment knowing he would need a poke. Praying that one would be enough. It was not. She was able to poke quick, but the numbing agent they use made the vein kind of freeze up, so we had to wait for a whole minute for the blood to actually be drawn. Things were going ok...and then the vein stopped giving blood. She manipulated the vein a few times (super proud of myself for not passing out both in that room and as I just typed the word "manipulated") but it just would not pull more. She told us she hoped they had enough. They did not.
Because the nurse was trying to stretch the sample to fill all that they needed, she filled one of them only halfway, in hopes of not needing another poke. A second poke was done about 10 minutes later, after waiting for the Study Nurse to see if they had another tube they could find, since all of Caden's lab stuff is specially shipped from Pennsylvania. They did not. We were going to pop the top off of the last one she needed, if the poke produced blood. Three minutes of more manipulation of the vein on the other arm, and they called in another nurse. By this time, I was ready to cry. Caden has had been poked ten times. It should have been three at this point. I DO NOT do needles, so my anxiety skyrockets when my kids need to get poked. He wasn't freaking out, but he had made many comments that he wished he didn't have to be poked any more. Bless the Study Nurse-- she said that if the second poke of the day didn't do it, we would just have to be done. They did not get every bit of blood they needed.
Not to worry, he has blood work at noon tomorrow. And the next day. And then IV needs again on Tuesday. My goodness, I hope his veins can rebound fast. I'm not ready to go through this again.
Dr. Hawkins called the lead doctor of the study (personally!! I love this man) to get more information about why Caden's reaction came about like it did. Apparently, the very first patient that tried this medication had the same reaction, although not as quickly. However, when they slowed it down, the patient did just fine. Because this Study is so promising, they did tell us more about it, but have told Caden many, many times that he has the right to pull out at any time. He told Dr. Hawkins that he really didn't want to, because of the side effects of both the reaction and Epi Pen, but that he was going to do it one more time. This boy amazes me with his courage and strength. He went through the day, not just watched, and he still wants to try again. So we are staying in Seattle. Tuesday is going to be a very pivotal day for The Boy in the Bed. Continued prayers for Caden (and his battered veins) would be much appreciated!!!
For now-- we are resting peacefully in our wonderful room at the Ronald McDonald House, watching The Carbanarro Effect, with the sound of crunching chips and snacking coming from my right. I'm the luckiest girl in the world tonight.
Tuesday, April 18, 2017
Immuno Day One!
The first set of labs were to make sure he is still healthy for the infusion today. They got vitals and a baseline EKG for today. 15 minutes before they started the infusion, they drew his blood again. They started the Miracke Drug at 12:30pm. At 2:30pm they'll do another EKG and blood draw. Then another EKG and blood draw at 5:30pm and 8:30pm. Intense!
The Miracle Drug.
We did get news that we got a room at Ronald McDonald House. It's in the older house, so not as new and updated as the last one we stayed at, but we hope it will be much quieter. Fingers crossed.Things are going well so far!
UPDATE
I had not pressed the Post button two minutes before Caden had a severe reaction to the medicine. He woke from a nap saying his tongue felt like it was swelling and that his throat felt scratchy. I pressed the nurse button, only to have doctors and nurses RUNNING to our room. In a four-minute time span, Caden went from scratchy throat, to flushed, red skin, red eyes, then "woozy," then "gonna pass out," to passed out, severely dropped blood pressure, to awake because of the Epi pen. We're done with the "Miracle Drug" for the day, with hopes of trying it at half speed next week. If he has another reaction, we are done with The Study forever. He received 1/4 of the dose.
They asked if we would be ok to continue the blood draws at hours three, five, and eight. "He worked hard for that IV!! We'll do those blood draws!"
He joked around with the doctors and nurses (making them comment that they knew he felt better), said he was hungry, had another EKG, started a massive case of the shakes, then fell asleep before he could eat the cheeseburger I ran to the cafeteria to get. He is resting comfortably now.
Witnessing something so scary had my adrenaline spiked pretty high. Now that I see him resting, I'm pretty drained. My goodness, I hope he can tolerate half speed next week. I want this medicine to have a chance!
UPDATE
He is being admitted to the hospital for observation overnight. He started with severe shaking again and is not feeling well at all-- all symptoms of another reaction. They have ordered more nausea meds, and have vitals planned throughout the night. I'm grateful that professionals will be watching over my son tonight. I am completely overwhelmed with it all. It has been a very taxing, emotionally-charged day. NOT how I imagined it going at all. We are most likely done with The Study. We are back on the surgery schedule for the ablation that was supposed to happen Friday, but will most likely be two weeks from now. Please pray for my son tonight. We need Him more than the professionals.
UPDATE
Randy stopped by the hospital before heading home for his flight tomorrow. He was able to be there for me as Caden was transitioned from Clinic to In Patient. It was agony walking into the cancer floor again. He has had a continuous fever for more than three hours now. His skin looks as if it has a massive sunburn. He's feeling ok, but not great. However, one thing I know from the day we have had-- things can change for the worst in 1.2 seconds.
While grabbing comfy pants from the car, I passed by a bumper sticker that perfectly says my new mantra: Fight Like a Kid. The Boy in the Bed fought HARD today. I could not be any more proud to call him mine.
Monday, April 17, 2017
Not A Drill
This is not a drill, peeps! We just got word that Caden starts tomorrow at 9:15am! I was so certain that we'd begin on Wednesday, so we'd travel up tomorrow. Now we are scrambling to pack and head up tonight. Gosh dang it, I didn't appreciate the time I had with my little ones! I am going to miss them dearly.
Tomorrow is going to be a massive day at the hospital. Not sure how much I will be able to update, so check back. Things are going to get interesting.
Tomorrow is going to be a massive day at the hospital. Not sure how much I will be able to update, so check back. Things are going to get interesting.
Immunotherapy-- Let's Do This!!!
CANCER, BEWARE!!!! We're in this to WIN!
Sunday, April 16, 2017
The Season
Baseball season has begun for both Brennon and Tyson. Richland National Little League was gracious enough to allow Brennon to be on Tyson's team. Since this is his first year, and his tryout wasn't super stellar, they allowed for him to "step down" from his age group to be with Tyson. Makes it super nice, since we are now going to miss the entire season. I'm so glad that the first game was on such a nice day, since I am going to miss many of the next games. If not all of the rest.
Brennon was "pitcher" very first. It was the best way to start out of game, because not two hits into the game, he assisted first baseman to get the runner out. He was basically beaming for the rest of the inning.
Next inning, they pretty much made the best thing in the world happen: Tyson was catcher, Brennon was "pitcher." Look at how cute this pictures is, knowing that.
It gets better!! My little Lefty got up to bat and hit the balls the second pitch! He was "Out" just seconds before he made it to first, but it was amazing that he hit the ball. He's caught the bug-- Baseball is Brennon's sport now.
Tyson is not the smallest on the team this year, but he does look like the youngest. My boys are still working on the skill that is baseball. All aspects, to tell you the truth. There is a sign on every dugout that says that "These are kids. Umpires are humans. There will be no college scholarships handed out at this game." It's mega true for my boys. They have fun, so I am happy. And since they are there for the fun, it wasn't too much of a devastation that they lost their first game 14 to 7. I don't even think they realize that they lost. Better luck next time, Dodgers!!! Love me some Baseball Boys!!!
Saturday, April 15, 2017
In the meantime
I saw a quote a while ago that struck me as so true:
When times are good, you hear the music. When times are tough, you hear the words. ~Unknown
Music has always been something that speaks to my heart. Many times on trips to or from Seattle, I purchase a song or album to listen to, in hopes that it will lift my sorrows and mood. Sometimes it is a song that I remember from my childhood, one that I really connected with during the struggles of adolescents. Other times it is a new album from an artist I already love. This last trip, I bought a discounted album on a whim that has a song that I'm certain was written for the times I have been going through. I cried hearing the words for the first time, and many times since.
In The Meantime by Jenny Jordan Frogley
In her heart she holds the dreams... of all that she would be when she was grown, of all that she would do when she was finally on her own. She dreamed she'd fly. She's still waiting for the chance to try.
But in the meantime she's a mother, and a daughter, and a wife. Doing all she can to stay above the daily grind... she doesn't know she's being molded and refined in the meantime.
Someday she'll go back to school... she dreams she'll soar, when she finally has the time to do more.
But in the meantime she's a sister, and a teacher, and a friend. Hours turn into days that turn to years that never end. And she wonders when she'll ever really find herself again. She's becoming one on whom God can depend in the meantime.
Heaven feels the joy of every victory in her life, and heaven hears her heart before she cries. But somewhere in the middle of the triumphs and the trials, she's becoming sanctified.
But in the meantime she's an answer, and a blessing, and a gift to every empty, aching heart that only she can lift... if she could only feel how much her Father cares, she would know she's being perfectly prepared in the meantime.
When times are good, you hear the music. When times are tough, you hear the words. ~Unknown
Music has always been something that speaks to my heart. Many times on trips to or from Seattle, I purchase a song or album to listen to, in hopes that it will lift my sorrows and mood. Sometimes it is a song that I remember from my childhood, one that I really connected with during the struggles of adolescents. Other times it is a new album from an artist I already love. This last trip, I bought a discounted album on a whim that has a song that I'm certain was written for the times I have been going through. I cried hearing the words for the first time, and many times since.
In The Meantime by Jenny Jordan Frogley
In her heart she holds the dreams... of all that she would be when she was grown, of all that she would do when she was finally on her own. She dreamed she'd fly. She's still waiting for the chance to try.
But in the meantime she's a mother, and a daughter, and a wife. Doing all she can to stay above the daily grind... she doesn't know she's being molded and refined in the meantime.
Someday she'll go back to school... she dreams she'll soar, when she finally has the time to do more.
But in the meantime she's a sister, and a teacher, and a friend. Hours turn into days that turn to years that never end. And she wonders when she'll ever really find herself again. She's becoming one on whom God can depend in the meantime.
Heaven feels the joy of every victory in her life, and heaven hears her heart before she cries. But somewhere in the middle of the triumphs and the trials, she's becoming sanctified.
But in the meantime she's an answer, and a blessing, and a gift to every empty, aching heart that only she can lift... if she could only feel how much her Father cares, she would know she's being perfectly prepared in the meantime.
Friday, April 14, 2017
The Study
On Wednesday night, while watching a Kohl's commercial in the hotel room about new Easter clothing, Caden said, "Oh great, here come family pictures..." A pillow or two was strategically thrown to bash him in the face.
While talking with Dr. Hawkins, Ashlee called my cell phone. Since she was driving Shelby, Brennon, Tyson, and Mira from her house down to the hospital, I needed to answer, so I handed the phone to Caden to answer it. I was listening to what Dr. Hawkins was telling me, but I also heard what Caden said to her, "She's talking with Dr. Hawkins. No more jumping on the bed for me!" How do you not giggle at that? Even if you are hearing news that feels overwhelming.
I thought that we were already enrolled in The Study. Nope-- we still needed to be screened. The screening involved an EKG (took all of 15-seconds), a full-body CT scan (even though he had had one just three weeks ago. They also did his head- which he has never had- to prove that he hasn't had a metastasis to his brain), and 10 viles of blood work (all of the nurses commented that it was the most blood work they'd seen ordered in a long, long time), to make sure he fit within the parameters of a prime candidate. He passed-- NOW we are enrolled. We signed more paperwork saying we, indeed, wanted to be a part of The Study, and sat to hear what it would entail. Even though we were there for that intent purpose, hearing it all felt overwhelming and scary. I was already exhausted from needing to drive all five kids and the dog to and from Mount Vernon/Seattle alone, plus having to do all of the hospital stuff being the only supervising adult, but I left feeling more drained and emotional than normal, despite getting all of my questions answered. I'm excited, don't get me wrong, but some of this seems like so much to bear.
1- Caden and I will be relocating to Seattle for one month on Tuesday. Ronald McDonald House has placed us as the "highest priority" to get a room. They will let us know as soon as we have one. They said they would try to get one that would accommodate our large visiting family, but we will take whatever they can give us. Jackie and Darwin will travel up tomorrow. We get to celebrate Randy's 40th birthday (April 18th) with those that gave him to me.
2- Because this is investigational and new, they do not know how it is going to make Caden feel. Due to this, we need to live within a one-hour radius of the hospital. When asking about Ashlee's house, which is within one hour- if traffic is not bad- it was a flat-out no. They want us at Ronald McDonald House, just five minutes away. The fact that they do not know how it will make him feel scares me so much. So much of cancer care is preparing your mind (as much as you can) before things happen. "He is going to be puking his guts out, having extreme diarrhea, lose his hair, feel super tired, (etc.)" is something that helps me cope with what is to come. It doesn't make it easy to watch him suffer so much, but I can prepare myself just a little bit to witness it, steel both my nerves and my heart just a little bit. Now, we are willingly walking into something that may be the hardest thing in the world, praying it cures him, but also hoping it is not too bad. I'm scared that there may be pain and suffering ahead.
3- The immunotherapy will be administered through an IV (possibly a port later on) for two hours, once a week, for up to two years. That one felt heavy. I will do anything needed to kill this cancer, but knowing that for the next two years we will most likely be traveling 7 hours in one day once a week to sit in the hospital for at least two hours feels daunting. I'm grateful to have this option, I'm grateful that we don't have to relocate to Seattle for the whole two years, I'm grateful...but it is still hard to think about it as it spans out in front of us, scary and unknown.
4- CT scan after that first month. If we see any growth at all, we will be done with The Study. If we do not see growth, or see any signs of improvement, we will continue for as long as we can, up to two years, with CT scans every two to three months. The tumor that is connected to his liver has not grown since the February 17th scan, but the tumor that is deep in his liver has; on March 24th (the day we found it) it measured approximately 1.4 cm, on April 13th, it measured 2.3cm. It was confirmed that it could not ever be cut out, it will need to be burned out. My goodness, I hope this immunotherapy makes it disappear!!! In truth, I hope it cleans up these two tumors and makes it so that we never have to see one again. Ever!!! I understand that it is a "good" study to have the scenario that Caden's cancer provides (recurrence inside and outside of an organ), and I'm glad that we are able to help further the science research, but I also truly pray that this is the answer we need-- I'm done with my son being "research."
I think one of the most difficult realizations is that Caden will spend his 16th birthday away from home. You better believe I'm going to try and come up with a way to make it epic! Seattle, Washington on May 15, 2017 may just make national news, I tell you!!
While talking with Dr. Hawkins, Ashlee called my cell phone. Since she was driving Shelby, Brennon, Tyson, and Mira from her house down to the hospital, I needed to answer, so I handed the phone to Caden to answer it. I was listening to what Dr. Hawkins was telling me, but I also heard what Caden said to her, "She's talking with Dr. Hawkins. No more jumping on the bed for me!" How do you not giggle at that? Even if you are hearing news that feels overwhelming.
I thought that we were already enrolled in The Study. Nope-- we still needed to be screened. The screening involved an EKG (took all of 15-seconds), a full-body CT scan (even though he had had one just three weeks ago. They also did his head- which he has never had- to prove that he hasn't had a metastasis to his brain), and 10 viles of blood work (all of the nurses commented that it was the most blood work they'd seen ordered in a long, long time), to make sure he fit within the parameters of a prime candidate. He passed-- NOW we are enrolled. We signed more paperwork saying we, indeed, wanted to be a part of The Study, and sat to hear what it would entail. Even though we were there for that intent purpose, hearing it all felt overwhelming and scary. I was already exhausted from needing to drive all five kids and the dog to and from Mount Vernon/Seattle alone, plus having to do all of the hospital stuff being the only supervising adult, but I left feeling more drained and emotional than normal, despite getting all of my questions answered. I'm excited, don't get me wrong, but some of this seems like so much to bear.
1- Caden and I will be relocating to Seattle for one month on Tuesday. Ronald McDonald House has placed us as the "highest priority" to get a room. They will let us know as soon as we have one. They said they would try to get one that would accommodate our large visiting family, but we will take whatever they can give us. Jackie and Darwin will travel up tomorrow. We get to celebrate Randy's 40th birthday (April 18th) with those that gave him to me.
2- Because this is investigational and new, they do not know how it is going to make Caden feel. Due to this, we need to live within a one-hour radius of the hospital. When asking about Ashlee's house, which is within one hour- if traffic is not bad- it was a flat-out no. They want us at Ronald McDonald House, just five minutes away. The fact that they do not know how it will make him feel scares me so much. So much of cancer care is preparing your mind (as much as you can) before things happen. "He is going to be puking his guts out, having extreme diarrhea, lose his hair, feel super tired, (etc.)" is something that helps me cope with what is to come. It doesn't make it easy to watch him suffer so much, but I can prepare myself just a little bit to witness it, steel both my nerves and my heart just a little bit. Now, we are willingly walking into something that may be the hardest thing in the world, praying it cures him, but also hoping it is not too bad. I'm scared that there may be pain and suffering ahead.
3- The immunotherapy will be administered through an IV (possibly a port later on) for two hours, once a week, for up to two years. That one felt heavy. I will do anything needed to kill this cancer, but knowing that for the next two years we will most likely be traveling 7 hours in one day once a week to sit in the hospital for at least two hours feels daunting. I'm grateful to have this option, I'm grateful that we don't have to relocate to Seattle for the whole two years, I'm grateful...but it is still hard to think about it as it spans out in front of us, scary and unknown.
4- CT scan after that first month. If we see any growth at all, we will be done with The Study. If we do not see growth, or see any signs of improvement, we will continue for as long as we can, up to two years, with CT scans every two to three months. The tumor that is connected to his liver has not grown since the February 17th scan, but the tumor that is deep in his liver has; on March 24th (the day we found it) it measured approximately 1.4 cm, on April 13th, it measured 2.3cm. It was confirmed that it could not ever be cut out, it will need to be burned out. My goodness, I hope this immunotherapy makes it disappear!!! In truth, I hope it cleans up these two tumors and makes it so that we never have to see one again. Ever!!! I understand that it is a "good" study to have the scenario that Caden's cancer provides (recurrence inside and outside of an organ), and I'm glad that we are able to help further the science research, but I also truly pray that this is the answer we need-- I'm done with my son being "research."
I think one of the most difficult realizations is that Caden will spend his 16th birthday away from home. You better believe I'm going to try and come up with a way to make it epic! Seattle, Washington on May 15, 2017 may just make national news, I tell you!!
Immunotherapy: Here.We.Go!
Thursday, April 13, 2017
The End
Ash and Russ needed to leave after lunch, so we quickly put together a surprise we'd planned for the kids. Ash needed to stop by the Mormon Bookstore to grab some stuff for Easter, so the Women quickly went for a shopping trip. We grabbed the candy and then filled the eggs while Russ took all of the kids to fly kites. Since it was so windy (perfect for kites, not for egg hunts) we decided to hide all 157 eggs in the house. It's funny, but I'm not sure why I have so many Easter eggs. We used 157, but that was truly only half of my stash. I'm a hoarder of Easter eggs, I guess. The Butterfingers wouldn't fit in each egg, so we used some massive eggs that I have and hid three Super eggs full of 6 Butterfingers, to be shared with everyone. We asked Caden and Keilie to help Everly and Aria, before they could collect their own. Each got to find 15, with a few extra and the Supers, of course.
Above: *Notice Shelby's hair. It comes as a reference later in the post.
Above, I am checking to see if the kids had found the ones I'd hidden.
Above, notice the bright ornace egg directly next to Keilie's head. She passed over that egg THREE times. I laughed as she walked away from it each time. It's not as if we hid it IN the egg carton!!!
By the end, all were desperate to find the Super eggs. Tyson found one, Caden found two.
Everly found all of three eggs and then cared more about what was in them than trying to find more. She took a rest next to Papa. Look how cute her little arm is, resting on his shoulder. Love that we get to see our kids with their Grandparents!! I seriously wish we lived closer. And by that, I mean that all of my family would move to Richland, naturally.
After the Wilsterman's left, we decided to sit down and have Caden teach us a game: BS. It was fun to watch everyone try to lie, but especially the younger three. Tyson was the WORST at it, but it made it so that we laughed and laughed and laughed. But we never laughed as much as we did every time my Dad would call BS on Randy. It just so happened that every time my Dad called it, he was telling the truth. He collected himself a few cards...
The ones on the table are his, as well. Needless to say, my Dad never won. Most times, left with almost the whole two decks in his own hands.
That night, after the younger kids went to bed, we stayed up until 11:00pm playing cards-- even allowing Caden and Keilie to stay up late. It was super fun! They taught us a game that we ended up playing as a family the whole weekend. Keilie said, "I love that whenever we get together with Grandpa and Grandma, they teach us a new game that we play over and over." I love that she has these memories of her Grandparents. I hope that one day they will mean as much to her as my own mean to me.
*Saturday we decided to get haircuts for everyone, but Keilie and me. Shelby has been asking forweeks months if she could cut her hair. She is sick of all of the brushing needed to keep it from being a rat's nest. I was getting sick of all of the protesting she always gave when I told her to go brush it. So, when she asked in the saddest tone how many inches her hair needed to be before she could donate it, I felt bad that she felt that that was the only time I would allow her to have her hair how she wanted. We let her choose how she wanted it, even though it broke my heart to see how much hair was being cut off. 9.5 inches to be precise.
She has both the perfect bone structure and hair thickness to pull this cut off. I love it! She loves that she got to choose what she wanted, without having to beg one more time to get it cut. It was adorable to hear her exclaim, "This is the first time I have worn my glasses and these capris!" She said something similar this morning, making me wonder if she'll comment on her haircut for the next few days, she loves it so much. "I can't wait for my friends to see that I got to cut my hair." I'm happy, because she's happy.
It's nice to have visitors, but it's nice to have our home be our own again. I love that we can once again give all of our attention to our kids, making everything we do for them. I love that the week that Randy took off work was not so that the parents could get away, but so that we could do fun stuff together. Randy and I have a perfect marriage that is only made stronger as we unify our family. Truly, the best place to be is together.
After the Wilsterman's left, we decided to sit down and have Caden teach us a game: BS. It was fun to watch everyone try to lie, but especially the younger three. Tyson was the WORST at it, but it made it so that we laughed and laughed and laughed. But we never laughed as much as we did every time my Dad would call BS on Randy. It just so happened that every time my Dad called it, he was telling the truth. He collected himself a few cards...
That night, after the younger kids went to bed, we stayed up until 11:00pm playing cards-- even allowing Caden and Keilie to stay up late. It was super fun! They taught us a game that we ended up playing as a family the whole weekend. Keilie said, "I love that whenever we get together with Grandpa and Grandma, they teach us a new game that we play over and over." I love that she has these memories of her Grandparents. I hope that one day they will mean as much to her as my own mean to me.
*Saturday we decided to get haircuts for everyone, but Keilie and me. Shelby has been asking for
It's nice to have visitors, but it's nice to have our home be our own again. I love that we can once again give all of our attention to our kids, making everything we do for them. I love that the week that Randy took off work was not so that the parents could get away, but so that we could do fun stuff together. Randy and I have a perfect marriage that is only made stronger as we unify our family. Truly, the best place to be is together.
Spring Break 2017
The End
Wednesday, April 12, 2017
Oh, Dam, that's Coulee
Thursday, April 6, 2017
Lenore Lake Caves
Grand Coulee Dam
Thursday's weather had me concerned for our chosen activity. Caden purchased a book from Seattle Children's gift shop on the 17th of February of Useless Facts. In it, he found that a dam here in Washington, The Grand Coulee Dam, was the world's largest concrete structure for a while. Because we had just found another tumor, and because we're scared that he may not be able to see all that he wants to see in his lifetime, or childhood even, we told him that we'd go during Spring Break... so we did. On the way, Randy found some caves that had a 1.5 mile round-trip hike. I'm glad we didn't know what kind of hike it was, I would have tried to talk us out of it, since we didn't have a backpack carrier for both Everly and Aria. Even 6-year old Austen kind of struggled. But it turned out all right in the end, you'll see. (Still can't get Beauty and the Beast out of my head. I loved it!)
Panoramic from our first ledge.
I love us!
Before we went to Grand Coulee visitor's center, we stopped off at the only eatery that looked family friendly and not packed. It was a Mom and Pop kind of shop that served both burgers and pizza. It was quite spendy, but the food was excellent-- it made it a little less difficult to hand her the credit card to sign away a second mortgage. Just kidding, it wasn't that expensive. But kind of.
Because of this little detour, and the actual one we had because of a flooded road, we got home basically just as dinner was being served. The rest of the night was spent just as all others had: resting, but having fun. Fun fact: not only was Beauty and the Beast a first for my parents, but so was Moana. Aria asked to watch the rest of it (we'd started it earlier in the week, but never finished it) but we ended up watching it from the first, since Grandma said she'd only seen bits and pieces.
The weather was good to us, the food was delicious, and the sites were breathtaking. Day 4- doing things in nature- was another success. This week is shaping up to be the best Spring Break ever!
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