Tuesday, December 13, 2016
You Have to Look for It
Waking with a knot in my stomach is par for the course on procedure days. Today was no different. You see, Dempsey had ANOTHER lumbar puncture- where they inject methotrexate into his cerebral spinal fluid to prevent the cancer cells from blasting into his brain. Okay, so I like the theory of keeping cancer out of my baby's brain but the method is all too unsettling. In addition to the lumbar puncture (LP), Dempsey also received an infusion of vincristine. Like any other LP the whole family went to CHOC OPI. Dempsey wasn't allowed to eat after 12am and his procedure was set for 9am. We had to arrive by 8:15am.
This day was a tad different though. At least as far as Mama Bear was concerned. You see, I've been learning more and more on this journey and today I was going to apply a little more pressure to the people that I felt needed it. And then God shows up.
The nurse we were told we would have was swapped out with another. The normal doctor who performs these procedures was on vacation. The anesthesiologist happened to be my favorite one. A new-to-CHOC oncologist (brain specialty) accompanied the procedure doc into our room and I lost my mind... for a good reason.
Lets start with the losing of my mind. I was shocked and happy to see a familiar face. By familiar I mean a face that met in 1998 when I was a senior and she was a freshman in high school. That's right, folks... almost 20 yrs ago I met Ashley. Even back then she was destined for the medical world. (Lets take a moment and pray that God did not bring the brain cancer doctor into my life for my family.) Anyhow, it was a divine appointment and I'm grateful to see this beautiful face in real life again.
Okay, now, let me unfold the rest of this novel about God showing up.
The original nurse we were supposed to have, Hazel, is a familiar face and we like her. We've met the nurse who ended up with us, Sabrina, and we like her too. She is acquainted with doTERRA oils so it was comfortable to talk with her about our use of them on Dempsey's journey. She is a healthy eater so it was comfortable talking with her about our eating habits and when/ how we splurge (burger days). Her family were immigrants in the 60's. Fast forward, her mother is suffering from auto-immune issues that have roots going back to their immigration to the States. *super sad face* She was a joy to have around and a blessing to talk to. Amid our long conversation (Jake was making appointments and picking up meds from the pharmacy) she told me "You are like the 1%..." What she meant by that is my knowledge, application, interest, involvement, etc is way above the "normal" cancer parent. This is a truth that makes me sad. Proud, but sad. I'm saddened that every parent isn't attacking this journey like my family is. I'm grateful that I have met an elite group of friends who are very similar to me in a similar journey of their own. Sabrina gave me such validation and was so encouraging.
Remember my favorite anesthesiologist? Yep, Tony ranks #1 on my list. Today he just proved his placement a worthy one. I was talking to him about the specific drugs used for sedation. I asked about removing one of them from use. He dialogued with me awhile and we settled on a plan or compromise. I had complete peace about it. He slightly elevated the dose of one drug and significantly decreased the dose of the other. He encouraged me to watch Dempsey and note my thoughts about how he came out of the sedation this go-round. He said "If you're happy with this method just tell the next anesthesiologist... and let me know." When we were talking about the drugs he was very interested in my thoughts and reasoning and he was intentional and engaged in his response. Most times I feel like the staff is rushing through my questions in an effort to get done with me to move on to the next patient. It's unsettling and irritating. As I was talking with Tony, I was sharing Dempsey's genetic concerns and various facts. He looked me square in the eyes and said, "You need go give a lecture." When my soul stopped quivering and the goosebumps subsided, I responded with a half chuckle, half exhale of "Okay..." He said, "No, I'm serious." He went on and explained that CHOC has these weekly (I think) meetings where medical staff, parents, and community members gather to listen to a speaker, etc. He encouraged me to check it out. Well, he said he would get me the information. I gave him my business card so he could email me information and then email him my thoughts on the sedation drug combo. I look forward to dialoguing with him, even if it's digital.
Now, the doctor performing the LP. She was just lovely. Her bedside manner was delightful. Her communication was warm, inviting, and engaging. She was genuinely interested in my questions and was focused on answering them if she could. She was aware that we are looking into the NUDT15 test. She understood my interest in it and made sure to pass on the reality that this test is typically used for those patients of Asian and Hispanic descent. I expressed my knowledge of that reality and explained about Dempsey's other genetic hiccups and how I really just wanted as much knowledge about the hidden parts of my son so that I can help him to the best of my ability. She was obliging and encouraging. Refreshing. She made comments about God too... especially so regarding the shirt Dempsey was wearing. He was wearing one of his many "This cancer kid is powered and protected by NEOLIFE" shirts. She read it and said it needed to say "God" on there too. She's right! One of the best moments of my encounter with her was when she relayed to me a discussion she had with Dr Horvath (who I respect greatly). The two of them had decided to start Dempsey on the lower dose of 6MP (nightly chemo pill) instead of the higher one. What an answer to prayer!!! Dempsey is on the cusp and could go either way- lower dose, higher dose. I am relieved that they chose the lower dose.
So, lovely nurse, wonderful anesthesiologist, pleasant surprise from the past, delightful doctor. All these things are gifts from God today. Friends, it really felt like God spent the day with me. What an honor. So much peace. So much joy. So much encouragement. Divine.
Now, on to lunch. We went to Chick fil-A at the Irvine Marketplace. We'd been there once before. The boys love it because it has a playplace. Dempsey promised he would be extra careful and let us know the moment he felt pain or anything out of the ordinary. After the boys finished their food the trotted off to play- carefully. A father and his young son were seated behind us. Shortly after our boys left the table his son joined them in the play area. A moment later the father, named Eric, came over and said something like, "I don't normally do this but I was listening to you talk and I was noticing your body language. My wife and I have the same poses. I sense there is a lot of pain in your journey and would like to offer to talk about it." He went on to share about his family's story. What a story it is! He shared about all the challenges his 7 yr old son, Ethan, faces every day. He told us about his young son, Matthew, who was with him. He shared about his employment issues stemming from a recent move out here from the east coast. By the time we were done it felt like we had offered him as much grace and understanding and he had given us. Another divine appointment. I gave him my business card and told him I would be expecting contact from his wife. Sweet moments.
After lunch came a trip to the zoo, complete with Old Navy flip flops- because when we left the house the zoo wasn't on the agenda. As we were pulling into our parking space, I see this woman at her car with her little girl in the stroller. I told Jake, "I know her." He goes, "Of course you do." Hahaha. I got out of the van and went over to the woman. I asked sarcastically, "Are you coming or leaving?" When she looked up I received a smile and a friendly hug. It was another divine appointment. Talking with Sarah went a long way to fill my extrovert cup. It was precious to catch up face-to-face. She has been following our journey and prays for Dempsey regularly. It is so special to have so many members of the Body praying for us. I told Sarah, "It pleases me to know that y'all are praying us through this journey because there are so many times where I'm not praying... or even feel like I can't pray (fatigue, emotional confusion/ emptiness)."
I met up with my guys and we walked around the Santa Ana Zoo. I found them at Spirit's exhibit (the female bald eagle). Dempsey fell asleep on the drive home after a bit of walking and yes, even running and climbing on the zoo's playground. What a gift it is to see him so strong after having a needle and chemo in his spine just hours earlier.
You have to look for it. You have to look for where God shows up. You have to look for what God gives you. Sometimes the blessings are wrapped in bows... other times they are wrapped in trials. Remember this: if we knew what God knows, we would ask for exactly what He gives us. It's not always pretty. It's not always fun. It's not always glamorous. The meaning is not always apparent. But it is always for good somewhere. We are not alone in this life and we need to remember two things:
1. enter into the suffering of others to help them with their burdens
2. allow others to enter into our suffering to help us with our burdens
God's fingerprints are EVERYWHERE... are you looking for them? Is there something you still want but have stopped asking for? Start asking again. Keep in mind, "No" is a valid answer and he knows your heart and your needs.
Prayer requests:
Pray against negative side effects of drugs
Pray for miraculous healing
Pray protection over every part of Dempsey's body
Pray protection over every facet of Dempsey (mind, spirit, emotions, body, etc)
Pray wisdom for the medical staff involved in Dempsey's journey
Pray for discernment for me (mom)
Pray for courage for us all
Pray that the Lord helps us teach Dempsey to swallow pills (he has over 1,000 to take over the next 3 yrs)
Pray against complications
Pray against toxicity
Pray safety over Dempsey
Pray for balanced emotions despite chemotherapy and steroids
Pray for divine direction for us as a family
Pray that problematic neighbors will miraculously be awesome (I really don't need any more stress)
Pray against colds, fevers, flu, viruses, germs, etc
Pray that we can maintain Dempsey's supplement regimen
Pray that we can maintain Dempsey's essential oil regimen
Pray that we are given the knowledge we need when we need it and how we can understand it
Pray over our marriage
Pray over our family's relationships
Pray that we will always be salt and light in the world
Pray that we will unite the Kingdom with purpose
Pray that our children will always be beacons that point people to Christ
Pray that we never miss an opportunity to advance the Gospel
Pray that we are sensitive to divine appointments and that we never shy away from them
Pray that we are always in tune with the Holy Spirit so we can sense His promptings
Pray that we will find rest and physical healing
Pray protection over all facets of us as well
Pray as you feel led
This day was a tad different though. At least as far as Mama Bear was concerned. You see, I've been learning more and more on this journey and today I was going to apply a little more pressure to the people that I felt needed it. And then God shows up.
The nurse we were told we would have was swapped out with another. The normal doctor who performs these procedures was on vacation. The anesthesiologist happened to be my favorite one. A new-to-CHOC oncologist (brain specialty) accompanied the procedure doc into our room and I lost my mind... for a good reason.
Lets start with the losing of my mind. I was shocked and happy to see a familiar face. By familiar I mean a face that met in 1998 when I was a senior and she was a freshman in high school. That's right, folks... almost 20 yrs ago I met Ashley. Even back then she was destined for the medical world. (Lets take a moment and pray that God did not bring the brain cancer doctor into my life for my family.) Anyhow, it was a divine appointment and I'm grateful to see this beautiful face in real life again.
Okay, now, let me unfold the rest of this novel about God showing up.
The original nurse we were supposed to have, Hazel, is a familiar face and we like her. We've met the nurse who ended up with us, Sabrina, and we like her too. She is acquainted with doTERRA oils so it was comfortable to talk with her about our use of them on Dempsey's journey. She is a healthy eater so it was comfortable talking with her about our eating habits and when/ how we splurge (burger days). Her family were immigrants in the 60's. Fast forward, her mother is suffering from auto-immune issues that have roots going back to their immigration to the States. *super sad face* She was a joy to have around and a blessing to talk to. Amid our long conversation (Jake was making appointments and picking up meds from the pharmacy) she told me "You are like the 1%..." What she meant by that is my knowledge, application, interest, involvement, etc is way above the "normal" cancer parent. This is a truth that makes me sad. Proud, but sad. I'm saddened that every parent isn't attacking this journey like my family is. I'm grateful that I have met an elite group of friends who are very similar to me in a similar journey of their own. Sabrina gave me such validation and was so encouraging.
Remember my favorite anesthesiologist? Yep, Tony ranks #1 on my list. Today he just proved his placement a worthy one. I was talking to him about the specific drugs used for sedation. I asked about removing one of them from use. He dialogued with me awhile and we settled on a plan or compromise. I had complete peace about it. He slightly elevated the dose of one drug and significantly decreased the dose of the other. He encouraged me to watch Dempsey and note my thoughts about how he came out of the sedation this go-round. He said "If you're happy with this method just tell the next anesthesiologist... and let me know." When we were talking about the drugs he was very interested in my thoughts and reasoning and he was intentional and engaged in his response. Most times I feel like the staff is rushing through my questions in an effort to get done with me to move on to the next patient. It's unsettling and irritating. As I was talking with Tony, I was sharing Dempsey's genetic concerns and various facts. He looked me square in the eyes and said, "You need go give a lecture." When my soul stopped quivering and the goosebumps subsided, I responded with a half chuckle, half exhale of "Okay..." He said, "No, I'm serious." He went on and explained that CHOC has these weekly (I think) meetings where medical staff, parents, and community members gather to listen to a speaker, etc. He encouraged me to check it out. Well, he said he would get me the information. I gave him my business card so he could email me information and then email him my thoughts on the sedation drug combo. I look forward to dialoguing with him, even if it's digital.
Now, the doctor performing the LP. She was just lovely. Her bedside manner was delightful. Her communication was warm, inviting, and engaging. She was genuinely interested in my questions and was focused on answering them if she could. She was aware that we are looking into the NUDT15 test. She understood my interest in it and made sure to pass on the reality that this test is typically used for those patients of Asian and Hispanic descent. I expressed my knowledge of that reality and explained about Dempsey's other genetic hiccups and how I really just wanted as much knowledge about the hidden parts of my son so that I can help him to the best of my ability. She was obliging and encouraging. Refreshing. She made comments about God too... especially so regarding the shirt Dempsey was wearing. He was wearing one of his many "This cancer kid is powered and protected by NEOLIFE" shirts. She read it and said it needed to say "God" on there too. She's right! One of the best moments of my encounter with her was when she relayed to me a discussion she had with Dr Horvath (who I respect greatly). The two of them had decided to start Dempsey on the lower dose of 6MP (nightly chemo pill) instead of the higher one. What an answer to prayer!!! Dempsey is on the cusp and could go either way- lower dose, higher dose. I am relieved that they chose the lower dose.
So, lovely nurse, wonderful anesthesiologist, pleasant surprise from the past, delightful doctor. All these things are gifts from God today. Friends, it really felt like God spent the day with me. What an honor. So much peace. So much joy. So much encouragement. Divine.
Now, on to lunch. We went to Chick fil-A at the Irvine Marketplace. We'd been there once before. The boys love it because it has a playplace. Dempsey promised he would be extra careful and let us know the moment he felt pain or anything out of the ordinary. After the boys finished their food the trotted off to play- carefully. A father and his young son were seated behind us. Shortly after our boys left the table his son joined them in the play area. A moment later the father, named Eric, came over and said something like, "I don't normally do this but I was listening to you talk and I was noticing your body language. My wife and I have the same poses. I sense there is a lot of pain in your journey and would like to offer to talk about it." He went on to share about his family's story. What a story it is! He shared about all the challenges his 7 yr old son, Ethan, faces every day. He told us about his young son, Matthew, who was with him. He shared about his employment issues stemming from a recent move out here from the east coast. By the time we were done it felt like we had offered him as much grace and understanding and he had given us. Another divine appointment. I gave him my business card and told him I would be expecting contact from his wife. Sweet moments.
After lunch came a trip to the zoo, complete with Old Navy flip flops- because when we left the house the zoo wasn't on the agenda. As we were pulling into our parking space, I see this woman at her car with her little girl in the stroller. I told Jake, "I know her." He goes, "Of course you do." Hahaha. I got out of the van and went over to the woman. I asked sarcastically, "Are you coming or leaving?" When she looked up I received a smile and a friendly hug. It was another divine appointment. Talking with Sarah went a long way to fill my extrovert cup. It was precious to catch up face-to-face. She has been following our journey and prays for Dempsey regularly. It is so special to have so many members of the Body praying for us. I told Sarah, "It pleases me to know that y'all are praying us through this journey because there are so many times where I'm not praying... or even feel like I can't pray (fatigue, emotional confusion/ emptiness)."
I met up with my guys and we walked around the Santa Ana Zoo. I found them at Spirit's exhibit (the female bald eagle). Dempsey fell asleep on the drive home after a bit of walking and yes, even running and climbing on the zoo's playground. What a gift it is to see him so strong after having a needle and chemo in his spine just hours earlier.
You have to look for it. You have to look for where God shows up. You have to look for what God gives you. Sometimes the blessings are wrapped in bows... other times they are wrapped in trials. Remember this: if we knew what God knows, we would ask for exactly what He gives us. It's not always pretty. It's not always fun. It's not always glamorous. The meaning is not always apparent. But it is always for good somewhere. We are not alone in this life and we need to remember two things:
1. enter into the suffering of others to help them with their burdens
2. allow others to enter into our suffering to help us with our burdens
God's fingerprints are EVERYWHERE... are you looking for them? Is there something you still want but have stopped asking for? Start asking again. Keep in mind, "No" is a valid answer and he knows your heart and your needs.
Prayer requests:
Pray against negative side effects of drugs
Pray for miraculous healing
Pray protection over every part of Dempsey's body
Pray protection over every facet of Dempsey (mind, spirit, emotions, body, etc)
Pray wisdom for the medical staff involved in Dempsey's journey
Pray for discernment for me (mom)
Pray for courage for us all
Pray that the Lord helps us teach Dempsey to swallow pills (he has over 1,000 to take over the next 3 yrs)
Pray against complications
Pray against toxicity
Pray safety over Dempsey
Pray for balanced emotions despite chemotherapy and steroids
Pray for divine direction for us as a family
Pray that problematic neighbors will miraculously be awesome (I really don't need any more stress)
Pray against colds, fevers, flu, viruses, germs, etc
Pray that we can maintain Dempsey's supplement regimen
Pray that we can maintain Dempsey's essential oil regimen
Pray that we are given the knowledge we need when we need it and how we can understand it
Pray over our marriage
Pray over our family's relationships
Pray that we will always be salt and light in the world
Pray that we will unite the Kingdom with purpose
Pray that our children will always be beacons that point people to Christ
Pray that we never miss an opportunity to advance the Gospel
Pray that we are sensitive to divine appointments and that we never shy away from them
Pray that we are always in tune with the Holy Spirit so we can sense His promptings
Pray that we will find rest and physical healing
Pray protection over all facets of us as well
Pray as you feel led
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Sunday, December 11, 2016
Up Next
Well, tomorrow (Monday) brings labs for Dempsey. Jake will take him in an effort to give me a break. I love that he does that.
Tuesday brings ANOTHER lumbar puncture (with sedation), another infusion, the beginning of 966 consecutive nights of pill-taking, and a 5-day series of steroid pills.
I am praying that the research team has decided to honor my demand of ordering that secondary genetic test (NUDT15) so there is a vial ready at his appoinment tomorrow morning. It would be in their best interest!
Pray over Dempsey. Pray against negative side effects/ happenings. Pray protection over his body. Pray protection over his emotions. Pray protection over his mind. Pray wisdom over the nurses and doctors. Pray God's guiding for me about this genetic testing journey. Pray that God will not choose to make an example out of Dempsey. I am not interested in my son being the guinea pig or reason that doctors wake up and change their ways. Pray for my sanity. Pray protection over our parent hearts. Our hearts are being wrung out and we're simply tuckered out.
Tonight, while at church, I was reacquainted with the scripture passage Genesis 50:20. It goes like this:
Anyway, tonight I decided to claim this passage over Dempsey's journey. On IG/ Facebook I posted the following:
A favorite saying I am read on this journey is this:
Alas, this journey of trusting what we cannot see or know, blindly, is exhausting. It's scary. We know God has shown his faithfulness all along this journey. He has used YOU to support our family in various ways the entire time. Yet I find myself struggling with doubt and control issues. I KNOW I'm not in control... but I still want to be, desperately. Why is it so hard for me to remember this- that if I can look back and see God's faithfulness, that means God was already out in front of us on this journey- because what was once the future became the present and eventually the past and God was in all of it. Perhaps it's because I'm weary. Perhaps it's because I'm human. Perhaps it's the very real effects of PTSD. Oh, Lord, please help. Amen
Tuesday brings ANOTHER lumbar puncture (with sedation), another infusion, the beginning of 966 consecutive nights of pill-taking, and a 5-day series of steroid pills.
I am praying that the research team has decided to honor my demand of ordering that secondary genetic test (NUDT15) so there is a vial ready at his appoinment tomorrow morning. It would be in their best interest!
Pray over Dempsey. Pray against negative side effects/ happenings. Pray protection over his body. Pray protection over his emotions. Pray protection over his mind. Pray wisdom over the nurses and doctors. Pray God's guiding for me about this genetic testing journey. Pray that God will not choose to make an example out of Dempsey. I am not interested in my son being the guinea pig or reason that doctors wake up and change their ways. Pray for my sanity. Pray protection over our parent hearts. Our hearts are being wrung out and we're simply tuckered out.
Tonight, while at church, I was reacquainted with the scripture passage Genesis 50:20. It goes like this:
You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives.This is what Joseph says to his brothers after the sold him into slavery because they were jealous of the favor he found with their father. Once sold into slavery, many trials ensued. However, God's plan had Joseph landing a career with the ruling leader of Egypt which eventually put him in a place of pardoning his brothers and providing for them. Read Genesis 50... it's an incredible passage.
Anyway, tonight I decided to claim this passage over Dempsey's journey. On IG/ Facebook I posted the following:
I claim this for Dempsey's current season! God, I believe, through Dempsey's journey, many lives will be saved (protected). Joseph endured many trials... May the trials I face prepare me to save the lives you bring to my life's door. AmenPray with me that God honors this claim and, in fact, uses this journey to save many lives.
A favorite saying I am read on this journey is this:
If we saw what God sees, we would ask for exactly what God gives.Is that not the most poignant thought?! I mean, no duh... if I knew what God knows I would want whatever He was going to give me.
Alas, this journey of trusting what we cannot see or know, blindly, is exhausting. It's scary. We know God has shown his faithfulness all along this journey. He has used YOU to support our family in various ways the entire time. Yet I find myself struggling with doubt and control issues. I KNOW I'm not in control... but I still want to be, desperately. Why is it so hard for me to remember this- that if I can look back and see God's faithfulness, that means God was already out in front of us on this journey- because what was once the future became the present and eventually the past and God was in all of it. Perhaps it's because I'm weary. Perhaps it's because I'm human. Perhaps it's the very real effects of PTSD. Oh, Lord, please help. Amen
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