As we trek further into the thick of this journey, we find our expectations and needs changing. We initially set up our caring bridge account with the idea that we would need help on Hank's chemo days with cleaning and meals. We've since realized that everything happening on the same day creates a rather stressful day for us. "Scheduling" our life is complicated. You can't schedule sick days, or long waits for treatments. You can't schedule fussy toddlers or the need for a day of quiet. Life is too unpredictable lately in our home to create a set day for things to happen each week. So while the needs themselves may not be changing all together, the way those needs are met require some tweaking.
I may need help from time to time to get a deep clean done on the kids toys, so if you are interested in being on the short list of people to call when that need arises... feel free to email me or message me on Facebook.
We also may need meals made from time to time... and if you are interested in providing us a meal, please feel free to email or message me for further details.
We are incredibly thankful for the outpour of support and prayers.
This Wednesday, Hank will be going in for the heavy hitting treatment. He's only had it once before, but it didn't go so well... he spent the night throwing up every two hours and then followed up with lots of diarrhea. Prayers for the doctors to be able to stay ahead of any symptoms from the chemo would be greatly appreciated. Also that he would remain well, and his counts not drop too low to receive treatment. Thanks.
LL
Sunday, April 17, 2016
Wednesday, April 13, 2016
Shifting sand
Sorry for the delay in posting an update.
These past few weeks have been... rough. chaotic. draining. Taylor took Hank to his 90 minute treatments each day for the week of 3/28-4/1... however, after going in early around 8:30-9am each day, the day hospital was slow in being able to get them in and they finished treatments around 2:30-3pm up until Friday ... when they got out a little sooner. This makes for long days for both the guys. While Taylor and Hank have been at Children's, I've been home with the girls. Monday was busy getting the house in order. Tuesday I had a dental appointment that was originally to take all day, but I ended up only needing a filling... praise the Lord. Wednesday I took Lena to get her cast put on... the doctors couldn't see a detectable fracture, but Lena was still quite tender when they examined her wrist. SO as a precaution, they put a cast on for three weeks, at the end of that duration, they will take new x-rays and see if there are any signs of healing... which tends to show more prominently on X-rays than a fracture can. If signs of a fracture, Lena will need to continue wearing a cast for an additional three weeks.
Two weeks in a row, we were exhausted. We have come to realize that our lives are like shifting sand. The waves of life, of illness, of treatments... these are what will determine our movements. But as waves do... There is ebb and there is flow. There is give and there is take. There are highs and there are lows. I was thankful for a high last week after our lows. A dear "sister-friend" (as we lovingly refer to each other) came up from the north Austin area to stay with me and help as she was able. She cleaned along side me, bought me food, listened, encouraged, loved on my kids, and just overall lifted my spirits. I love her dearly... She has two daughters close in age to Corin and Hank. We have known each other since high school. But not only are we friends, our moms are good friends and our kids as well... Three generations of friendships. It is a beautiful thing. And her love toward me was a beautiful thing last week. But as I said, waves must come and waves must go, Kristen had to get back to her sweet family. The wave continued to ride high that week, Hank was doing well, the other kids were doing well, and Taylor and I were able to get away for a couple hours on Friday to attend a painting venue. We took a couple beers and painted away. It was incredibly therapeutic. I had forgotten how much I love painting.
I should have known it was coming... Every high wave must crash, right?! Saturday morning began with a slight headache. Then came the sinus pressure. Then the drowsiness. I began sneezing and sniffling, assuming this was allergies as the pollen counts were through the roof. But by the wee morning hours of Sunday, chills and fever hit. The next morning I finally drug myself out of bed, loaded up the girls, and headed for my parents "safe house." We needed to keep Hank well... Even if it meant me leaving my own home to do it. I am still convinced it was just severe allergies rather than a cold, but we were all wanting to be safe rather than sorry. I can home Monday evening, just missing the hail storm that plowed through my parents' area of the metroplex. Hank had chemo today and last week that were the outpatient injections. He is doing well. His blood counts are still in a good range and he is in good spirits. By lunch time each day he has dark circles forming under his bright eyes. Our energetic no-nap Hank now takes naps almost every day. He is more of a melt down mess emotionally when things aren't as he wants them. He eats far less during long chemo weeks, or roughly 24 hours after chemo. Dinners are always a struggle lately. His most appealing foods lately have been sausage patties, pancakes, cereal, goldfish, grilled peanut butter and jam sandwiches, milkshakes, and milk. We are just trying to fatten him up while he'll take food... So if he asks for it, he usually gets it.
As always, we are thankful for your prayers and love.
LL
These past few weeks have been... rough. chaotic. draining. Taylor took Hank to his 90 minute treatments each day for the week of 3/28-4/1... however, after going in early around 8:30-9am each day, the day hospital was slow in being able to get them in and they finished treatments around 2:30-3pm up until Friday ... when they got out a little sooner. This makes for long days for both the guys. While Taylor and Hank have been at Children's, I've been home with the girls. Monday was busy getting the house in order. Tuesday I had a dental appointment that was originally to take all day, but I ended up only needing a filling... praise the Lord. Wednesday I took Lena to get her cast put on... the doctors couldn't see a detectable fracture, but Lena was still quite tender when they examined her wrist. SO as a precaution, they put a cast on for three weeks, at the end of that duration, they will take new x-rays and see if there are any signs of healing... which tends to show more prominently on X-rays than a fracture can. If signs of a fracture, Lena will need to continue wearing a cast for an additional three weeks.
Two weeks in a row, we were exhausted. We have come to realize that our lives are like shifting sand. The waves of life, of illness, of treatments... these are what will determine our movements. But as waves do... There is ebb and there is flow. There is give and there is take. There are highs and there are lows. I was thankful for a high last week after our lows. A dear "sister-friend" (as we lovingly refer to each other) came up from the north Austin area to stay with me and help as she was able. She cleaned along side me, bought me food, listened, encouraged, loved on my kids, and just overall lifted my spirits. I love her dearly... She has two daughters close in age to Corin and Hank. We have known each other since high school. But not only are we friends, our moms are good friends and our kids as well... Three generations of friendships. It is a beautiful thing. And her love toward me was a beautiful thing last week. But as I said, waves must come and waves must go, Kristen had to get back to her sweet family. The wave continued to ride high that week, Hank was doing well, the other kids were doing well, and Taylor and I were able to get away for a couple hours on Friday to attend a painting venue. We took a couple beers and painted away. It was incredibly therapeutic. I had forgotten how much I love painting.
I should have known it was coming... Every high wave must crash, right?! Saturday morning began with a slight headache. Then came the sinus pressure. Then the drowsiness. I began sneezing and sniffling, assuming this was allergies as the pollen counts were through the roof. But by the wee morning hours of Sunday, chills and fever hit. The next morning I finally drug myself out of bed, loaded up the girls, and headed for my parents "safe house." We needed to keep Hank well... Even if it meant me leaving my own home to do it. I am still convinced it was just severe allergies rather than a cold, but we were all wanting to be safe rather than sorry. I can home Monday evening, just missing the hail storm that plowed through my parents' area of the metroplex. Hank had chemo today and last week that were the outpatient injections. He is doing well. His blood counts are still in a good range and he is in good spirits. By lunch time each day he has dark circles forming under his bright eyes. Our energetic no-nap Hank now takes naps almost every day. He is more of a melt down mess emotionally when things aren't as he wants them. He eats far less during long chemo weeks, or roughly 24 hours after chemo. Dinners are always a struggle lately. His most appealing foods lately have been sausage patties, pancakes, cereal, goldfish, grilled peanut butter and jam sandwiches, milkshakes, and milk. We are just trying to fatten him up while he'll take food... So if he asks for it, he usually gets it.
As always, we are thankful for your prayers and love.
LL
Monday, March 28, 2016
Holy (Moly) Week
This week was Holy week... as we celebrated the life, death, and resurrection of Jesus Christ.
Most people were taking frequent trips to their local churches in celebration with the Body... The Letts, however, were making frequent trips to Children's hospital with our kids' bodies.
We started the week off with the awakening of a Hank, screaming and vomiting at 1am Monday morning. Taylor and I scurried to get him in the tub and clean/sanitize his bed and path to the bathtub. Of course there would be two more times of this to follow. Hank and Taylor both finally fell asleep around 5:30 that morning and Taylor and I were both exhausted that day. Thankfully we have amazing moms who stepped in to help. Lena went to grandma Lett's and grandma Maynard came to help clean/sanitize and watch Hank and Ruby while we got some rest. While we tried to get fluids in Hank, they just wouldn't stay in... the vomiting ceased, but then things started erupting out the other end... poor guy just wasn't having a great day. We felt like we had over-exposed him to people and bacteria that weekend and he likely caught a "bug." So... after trying our best to get him to drink all day, we finally called the oncologists (again, after calling them when symptoms all started @ 1am) to see if we needed to bring him in for fluids... bad things start to happen if a cancer patient gets dehydrated, things we'd rather not be witness to. And they agreed that with him going to sleep, and not taking fluid in for the duration of the night in addition to Monday's lacking... he should come in to check his hydration level and get it up if low. So, at 9pm, we headed off to Children's. After an hour in traffic, which is normally a 20-25 minute drive, we arrived in the ER, where we waited another hour, and finally ended up in a room... were we waited another half hour before Hank was treated. They gave him fluids and a strong antibiotic, he ate three popsicles, and we were on our way home again. Needless to say, we were tired the next morning. Tuesday was a lazy day with not much on the agenda, thankfully.
Wednesday Hank went in for his outpatient injection, to which he really didn't have much in the way of side effects. We laid low the entire week, to give him time to build his system back up. Friday, I had to go to Children's in the morning to pick up an antibiotic his doctor wanted him to take prior to his next round of the week-long Irinotecan injections... traffic was not so horrendous this time! Yay!
That evening, Grandma and Grandpa Maynard were going to watch the kiddos while this mommy and daddy went on a date night. So after the kids were settled, we went for sushi, drinks and a movie! The sushi was delicious, but as we were headed to the movie we got a call... kid screaming in the background. Lena had tipped over off a toddler bike and hurt her wrist. With what we thought might be a broken wrist, we had mom meet us at... no surprise here... Children's. After only an hour and a half in the waiting room (I was truly surprised at this) we were taken back to a room... where we waited another half hour to be seen. By the time they were ready to take her to X-rays, we decided it was best I take Ruby home and wait there... hopefully to get some rest. Taylor and Lena headed into X-rays and came home with a splint on her potentially fractured left wrist around 1:30am.
We rounded out the week with two separate Easter celebrations with our families. It was good to be surrounded by loved ones rather than hospital staff. This was an exhausting week. This week also brought it all home... and reminded us that we are now protecting a fragile immune system. I was fighting back tears as we walked Hank, with his medical grade surgical mask, and Lena, with her splint framed wrist, down the aisle toward communion on Easter morning. It just felt like life was snowballing. The reality that our son would need more restricted exposure, meaning we would need more restricted exposure as well. I installed hand sanitizing dispensers on the walls as you enter both our doors. Tears rolled down my face as I placed the bags of sanitizer in these "sterile" additions to our home. I had ordered shoe covers, which are now here for visitors who don't want to take off their shoes... and masks for our visitors as well. It feels like a hospital. So I started to hang things on the wall... because the blank walls made it feel more so like a hospital/sterile place. I want our home to feel like home, not another hospital room... but I want it to be just as safe as a hospital. I love my family and friends, but I have a feeling we will be seeing less and less of them as the year progresses. Taylor and I are grappling with all the realities of life coming to a head lately... it is hard to not be frustrated and discouraged when it feels like we are carrying so much lately. Having people quote scriptures like "And God is faithful; he will not let you be tempted beyond what you can bear."
I feel that I should disclose that scripture of this nature is not really comforting at this time... bumper sticker phrases of scripture are not likely to go over well with us in this season. Saying you are praying for us, yes... but telling us we are stronger than the burdens... not so much. We are hurting. We are struggling. Taylor and I are both processing things differently... but quoting scripture at us right now, it is not helpful or encouraging to either of us. We love the Lord. We are trusting in God... but taking scripture out of context and trying to make it fit ours, well, it hurts us more than it helps us. Because we feel like right now, this all IS more than we can bear. That these burdens ARE too great for us. This is where we can lay them at the Lord's feet... but it is constant. It is not a one time deal. It is every time Hank goes to the bathroom, or coughs, or puts his fingers in his mouth, or forgets to wash his hands, or comes in contact with someone we don't know well, or has a slight fever, or sleeps later than usual, or drinks the bath water... the list goes on. The days go on. It is non-stop for now.
We realize everyone means well, we just need you to be sympathetic with us, and not necessarily encouraging right now. Mourn with us... and when we are ready to celebrate the triumphs... celebrate with us. Thanks all.
On a side note:
Last year on Good Friday we spent the evening in the ER with Corin. This year, Lena decided to carry on the tradition... The only difference is that instead of stabbing herself in the throat with a severed chopstick, she fell off a toddler bike and possibly fractured her wrist. My kids apparently like to join in on the suffering on Good Fridays. Praying for quick healing for Lena... And that this wouldn't continue to be a tradition with our kids.
LL
Most people were taking frequent trips to their local churches in celebration with the Body... The Letts, however, were making frequent trips to Children's hospital with our kids' bodies.
We started the week off with the awakening of a Hank, screaming and vomiting at 1am Monday morning. Taylor and I scurried to get him in the tub and clean/sanitize his bed and path to the bathtub. Of course there would be two more times of this to follow. Hank and Taylor both finally fell asleep around 5:30 that morning and Taylor and I were both exhausted that day. Thankfully we have amazing moms who stepped in to help. Lena went to grandma Lett's and grandma Maynard came to help clean/sanitize and watch Hank and Ruby while we got some rest. While we tried to get fluids in Hank, they just wouldn't stay in... the vomiting ceased, but then things started erupting out the other end... poor guy just wasn't having a great day. We felt like we had over-exposed him to people and bacteria that weekend and he likely caught a "bug." So... after trying our best to get him to drink all day, we finally called the oncologists (again, after calling them when symptoms all started @ 1am) to see if we needed to bring him in for fluids... bad things start to happen if a cancer patient gets dehydrated, things we'd rather not be witness to. And they agreed that with him going to sleep, and not taking fluid in for the duration of the night in addition to Monday's lacking... he should come in to check his hydration level and get it up if low. So, at 9pm, we headed off to Children's. After an hour in traffic, which is normally a 20-25 minute drive, we arrived in the ER, where we waited another hour, and finally ended up in a room... were we waited another half hour before Hank was treated. They gave him fluids and a strong antibiotic, he ate three popsicles, and we were on our way home again. Needless to say, we were tired the next morning. Tuesday was a lazy day with not much on the agenda, thankfully.
Wednesday Hank went in for his outpatient injection, to which he really didn't have much in the way of side effects. We laid low the entire week, to give him time to build his system back up. Friday, I had to go to Children's in the morning to pick up an antibiotic his doctor wanted him to take prior to his next round of the week-long Irinotecan injections... traffic was not so horrendous this time! Yay!
That evening, Grandma and Grandpa Maynard were going to watch the kiddos while this mommy and daddy went on a date night. So after the kids were settled, we went for sushi, drinks and a movie! The sushi was delicious, but as we were headed to the movie we got a call... kid screaming in the background. Lena had tipped over off a toddler bike and hurt her wrist. With what we thought might be a broken wrist, we had mom meet us at... no surprise here... Children's. After only an hour and a half in the waiting room (I was truly surprised at this) we were taken back to a room... where we waited another half hour to be seen. By the time they were ready to take her to X-rays, we decided it was best I take Ruby home and wait there... hopefully to get some rest. Taylor and Lena headed into X-rays and came home with a splint on her potentially fractured left wrist around 1:30am.
We rounded out the week with two separate Easter celebrations with our families. It was good to be surrounded by loved ones rather than hospital staff. This was an exhausting week. This week also brought it all home... and reminded us that we are now protecting a fragile immune system. I was fighting back tears as we walked Hank, with his medical grade surgical mask, and Lena, with her splint framed wrist, down the aisle toward communion on Easter morning. It just felt like life was snowballing. The reality that our son would need more restricted exposure, meaning we would need more restricted exposure as well. I installed hand sanitizing dispensers on the walls as you enter both our doors. Tears rolled down my face as I placed the bags of sanitizer in these "sterile" additions to our home. I had ordered shoe covers, which are now here for visitors who don't want to take off their shoes... and masks for our visitors as well. It feels like a hospital. So I started to hang things on the wall... because the blank walls made it feel more so like a hospital/sterile place. I want our home to feel like home, not another hospital room... but I want it to be just as safe as a hospital. I love my family and friends, but I have a feeling we will be seeing less and less of them as the year progresses. Taylor and I are grappling with all the realities of life coming to a head lately... it is hard to not be frustrated and discouraged when it feels like we are carrying so much lately. Having people quote scriptures like "And God is faithful; he will not let you be tempted beyond what you can bear."
I feel that I should disclose that scripture of this nature is not really comforting at this time... bumper sticker phrases of scripture are not likely to go over well with us in this season. Saying you are praying for us, yes... but telling us we are stronger than the burdens... not so much. We are hurting. We are struggling. Taylor and I are both processing things differently... but quoting scripture at us right now, it is not helpful or encouraging to either of us. We love the Lord. We are trusting in God... but taking scripture out of context and trying to make it fit ours, well, it hurts us more than it helps us. Because we feel like right now, this all IS more than we can bear. That these burdens ARE too great for us. This is where we can lay them at the Lord's feet... but it is constant. It is not a one time deal. It is every time Hank goes to the bathroom, or coughs, or puts his fingers in his mouth, or forgets to wash his hands, or comes in contact with someone we don't know well, or has a slight fever, or sleeps later than usual, or drinks the bath water... the list goes on. The days go on. It is non-stop for now.
We realize everyone means well, we just need you to be sympathetic with us, and not necessarily encouraging right now. Mourn with us... and when we are ready to celebrate the triumphs... celebrate with us. Thanks all.
On a side note:
Last year on Good Friday we spent the evening in the ER with Corin. This year, Lena decided to carry on the tradition... The only difference is that instead of stabbing herself in the throat with a severed chopstick, she fell off a toddler bike and possibly fractured her wrist. My kids apparently like to join in on the suffering on Good Fridays. Praying for quick healing for Lena... And that this wouldn't continue to be a tradition with our kids.
LL
Saturday, March 19, 2016
Spring Break Road Trip
Last week, Hank went in for treatments everyday for 90 minutes as his medicine was slowly injected. Each day, they checked Hank's counts and as the week progressed, his hemoglobin levels dropped. On Friday, we were cleared by his doctors to take a trip, not sure when or if we would get a chance for a trip again anytime soon... or at all in the next year... So off we went, to rolling hills Iowa. It was a long ride, stopping for the night along the way. But it was so rewarding to finally land in Iowa, with family eager to see Hank... and his family. :)
We got there on Saturday afternoon and left Tuesday morning. We had off and on sprinkles and sunshine. It was a great visit with family. The kids all enjoyed themselves greatly and I may or may not have sanitized J&S's home. :) Corin is now to the age where the memories are for sure sticking with him, and Hank too... so we were incredibly thankful to the Lord that Hank's counts remained high enough for us to be able to travel.
Hank is really picking up on his "dos and don'ts" of being a cancer patient. He frequently holds out his hands and admits to having touched something, waiting for us to request that he go wash his hands. Other times he will apply hand sanitizer without us even asking. At the few restaurants we went to, I would hand Hank a hand sanitizing wipe, which he would proceed to wipe not only his hands... but his table and chair.
He has also become vigilant about his drinking water. He announced to one waiter, "I can't have tap water, only bottled water." The waiter asked Taylor and I if that was true and we both shook our heads yes, smiles on our faces. If Hank is unsure about something, he has begun asking. It is a huge relief to see him take on some of the "maintenance" responsibilities.
His hair is still falling out, a few hundred hairs still hanging on. Tonight I gave Corin a haircut, and Hank asked me to shave his head bald. Corin was shocked... "Why would you want to be bald?" (We didn't chime in that he soon would be anyways) and Hank replied with " I want to be bald... I like it." So his transition to no hair will be pretty easy then. Good to know. ;) Hank has lost a little weight and his face is looking thinner than before treatments ever started... he is looking more and more like a bigger kid. I think back to the things I remember from being 4 or 5. I remember few things from that time, but the ones I do, were scary memories... like our car sliding on the ice... or having to get a huge shot before kindergarten... or almost falling on my head at the dance studio that tried to teach gymnastics and thought they could spot me in a back-handspring. I think about when Hank grows older... what will he remember from this time? I really hope it will be the good times... like when he got to go on a road trip to Iowa with his family. But if it is the bad times, I hope he remembers it in the light of Truth. I hope he sees God's hand in his healing. I hope he asks to see pictures, and have mom and dad tell him the story of when he had cancer, and that we will be able to cry tears of joy as we recount the many ways Jesus saw him through his treatments and healing and full remission. I pray this will be our hearts and attitudes, but mostly, I pray the Lord will use this journey to bring Hank to an understanding of who Christ is... and subsequently, place his trust and hope securely in his loving Savior's hands. Sweet Hank... praying for healing, praying for Hope.
LL
I leave you with photos.
We got there on Saturday afternoon and left Tuesday morning. We had off and on sprinkles and sunshine. It was a great visit with family. The kids all enjoyed themselves greatly and I may or may not have sanitized J&S's home. :) Corin is now to the age where the memories are for sure sticking with him, and Hank too... so we were incredibly thankful to the Lord that Hank's counts remained high enough for us to be able to travel.
Hank is really picking up on his "dos and don'ts" of being a cancer patient. He frequently holds out his hands and admits to having touched something, waiting for us to request that he go wash his hands. Other times he will apply hand sanitizer without us even asking. At the few restaurants we went to, I would hand Hank a hand sanitizing wipe, which he would proceed to wipe not only his hands... but his table and chair.
He has also become vigilant about his drinking water. He announced to one waiter, "I can't have tap water, only bottled water." The waiter asked Taylor and I if that was true and we both shook our heads yes, smiles on our faces. If Hank is unsure about something, he has begun asking. It is a huge relief to see him take on some of the "maintenance" responsibilities.
His hair is still falling out, a few hundred hairs still hanging on. Tonight I gave Corin a haircut, and Hank asked me to shave his head bald. Corin was shocked... "Why would you want to be bald?" (We didn't chime in that he soon would be anyways) and Hank replied with " I want to be bald... I like it." So his transition to no hair will be pretty easy then. Good to know. ;) Hank has lost a little weight and his face is looking thinner than before treatments ever started... he is looking more and more like a bigger kid. I think back to the things I remember from being 4 or 5. I remember few things from that time, but the ones I do, were scary memories... like our car sliding on the ice... or having to get a huge shot before kindergarten... or almost falling on my head at the dance studio that tried to teach gymnastics and thought they could spot me in a back-handspring. I think about when Hank grows older... what will he remember from this time? I really hope it will be the good times... like when he got to go on a road trip to Iowa with his family. But if it is the bad times, I hope he remembers it in the light of Truth. I hope he sees God's hand in his healing. I hope he asks to see pictures, and have mom and dad tell him the story of when he had cancer, and that we will be able to cry tears of joy as we recount the many ways Jesus saw him through his treatments and healing and full remission. I pray this will be our hearts and attitudes, but mostly, I pray the Lord will use this journey to bring Hank to an understanding of who Christ is... and subsequently, place his trust and hope securely in his loving Savior's hands. Sweet Hank... praying for healing, praying for Hope.
LL
I leave you with photos.
Monday, March 7, 2016
Becoming real.
Today Hank began his fourth round of Chemo. This week he will receive a drug that requires him to go in for an hour and a half long transfusion treatment. This will take the place of one of the more toxic drugs in his treatment plan, the one that made him vomit the first week. It has the potential to be less toxic, so the doctors like to alternate it with the heavy hitter. Since Hank will be going in each day this week, the access cords to his chest port were left on... covered with a huge, clear, protective sticker/bandaid so he can't knock it loose. Because of this bandaid needing to remain in place, baths are a little more "sponge bath" than usual. As I knelt beside the tub tonight, scrubbing his head with a soapy washcloth... I cried. Patches of hair were noticeable missing. It was becoming real. Our son has cancer.
I bent to rinse the soap from the washcloth, so that I could rinse Hank's head, but noticed the amount of hair stuck to the fibers of the cloth. I stared as I tried to rinse them off. I stared as I wiped Hank's head to remove the soap... as the little hairs began to cling to the back of his neck on the wet skin. I stared as my sweet little four year old boy smiled up at me saying, "That feels good mom. Will you rub my back with the washcloth again?" Tears smoldered down my cheeks. I couldn't get all the hairs to release from his neck and upper back. The thought that I can't wipe away his pain, his suffering, his sickness... it stung in the deepest recesses of my heart.
I stared at him as he continued to smile in his moment of playing with the bath toys. He, only being four, knew to take care to keep his port bandage dry. He, being only four, knew to not squirt the water into his mouth as he used to... and knew not to drink the bath water as he used to... and knew not to splash as he so wanted to... he, being only four. His life has been altered. Hank will forever be changed by this cancer. And to me, those little hairs clinging to the washrag made this journey all the more real.
I often don't have time to sit and reflect on this whirlwind of a journey we were forced to embark upon. When I do, it is most often met with a sense of thanksgiving... of awe at how gracious the Lord has been in the many answered prayers. But tonight, I was struck by the worldly side of it all. I saw the brokenness, the pain, the sadness. I didn't question why Hank, or what if... I just mourned the loss of his hair, his health, his future. I mourned the loss of playing in the mud puddles, sonic happy hour drinks, and playing in the sun without a shirt. I mourned the things that normal four year old boys do, like drinking the bathtub water... however gross that may be, I wish he could... but he can't. I wish I could wash his hair without crying... but I can't.
LL
I bent to rinse the soap from the washcloth, so that I could rinse Hank's head, but noticed the amount of hair stuck to the fibers of the cloth. I stared as I tried to rinse them off. I stared as I wiped Hank's head to remove the soap... as the little hairs began to cling to the back of his neck on the wet skin. I stared as my sweet little four year old boy smiled up at me saying, "That feels good mom. Will you rub my back with the washcloth again?" Tears smoldered down my cheeks. I couldn't get all the hairs to release from his neck and upper back. The thought that I can't wipe away his pain, his suffering, his sickness... it stung in the deepest recesses of my heart.
I stared at him as he continued to smile in his moment of playing with the bath toys. He, only being four, knew to take care to keep his port bandage dry. He, being only four, knew to not squirt the water into his mouth as he used to... and knew not to drink the bath water as he used to... and knew not to splash as he so wanted to... he, being only four. His life has been altered. Hank will forever be changed by this cancer. And to me, those little hairs clinging to the washrag made this journey all the more real.
I often don't have time to sit and reflect on this whirlwind of a journey we were forced to embark upon. When I do, it is most often met with a sense of thanksgiving... of awe at how gracious the Lord has been in the many answered prayers. But tonight, I was struck by the worldly side of it all. I saw the brokenness, the pain, the sadness. I didn't question why Hank, or what if... I just mourned the loss of his hair, his health, his future. I mourned the loss of playing in the mud puddles, sonic happy hour drinks, and playing in the sun without a shirt. I mourned the things that normal four year old boys do, like drinking the bathtub water... however gross that may be, I wish he could... but he can't. I wish I could wash his hair without crying... but I can't.
LL
Wednesday, March 2, 2016
Third round of Chemo & A Science lesson**
Hank had another outpatient injection of Chemo today and we found out all his "counts" are good. Meaning his platelets, white, and red blood cell numbers are still in a safe/healthy range. :) Yay Hank! While Hank was fighting cancer, I (mom) was at home with a friend fighting germs. We had our first "Sanitizing Party" today... and I would say it went rather well. Everything is dusted, scrubbed and sanitized. Yep, never thought I could claim to have THE cleanest house on the block, but 'tis true.
While the germ load in our house is decreasing, so is Hank's tumor, which continues to shrink down to reveal more of his wonderfully and perfectly made face. Praise the Lord. And with that shrinking, started the questions of: "If it is shrinking so quickly, does that mean he won't have to have Chemo as long?!" Well, here is the longest short answer I can give you. :)
So let's start at the beginning. Who remembers the Cell Cycle from your 6th grade science class? Or 9th grade biology... wherever we learned it. Only a few of you? Good, that makes me feel better, because I had to look it up too. Here is an illustration of the cycle, for those who need a refresher course.
Now this is a pretty basic illustration, but basically the cell has a resting phase, a growing phase, a phase of gathering cellish ingredients, a growing of said ingredients, and then the splitting happens... which eventually gives birth to two identical cells. TWINS! So... during all the growing, gathering, and growing... the cell also serves its function, whether that is being a muscle, an organ, a bone... well, you get it. And each type of tissue (bone/muscular...), has a different rate at which this cell cycle happens. They can vary from days, to weeks, to months... and yes, even years. The problem is that cancer cells have an accelerated growth cycle... but again, depending on the tissue, it can vary.
So Chemotherapy attacks cells at the dividing stage. Some chemotherapy drugs kill dividing cells by damaging the part of the cell's control center that makes it divide, while other chemo drugs interrupt chemical processes involved in cell division. This is why Hank has several different types of chemo drugs in his therapy. And because the cells involved in the area of cancer infestation affect multiple types of tissue, there are different rates of growth the doctors have to consider in creating Hank's treatment plan. So since bone is involved... which has one of the longer growth cycles, and because cancer cells don't follow any specific growth plan, the oncologists have to be certain they can kill all the cancerous cells. This can be tricky when the chemo drugs can only affect a cell as it is splitting... meaning the drug has to be administered at the right time to affect that split cycle, meaning it needs to happen a LOT of times to ensure the drug hits the cell at the right time. Hence, the year long treatment plan for Hank, and hence the shrinking. The chemo has been able to hit the fastest growing tissues first, which are skin cells and soft tissue... so our oncologist said to expect the tumor to begin a plateau as it attacks the lengthier cell cycle tissues. (Just FYI)
As Chemo's counterpart in Hank's treatment, radiation changes the genes in the cells, typically killing them. This process also takes place most effectively during the cell division phase. The difference between chemo and radiation is that radiation is administered EVERY weekday for several weeks in a row, in an effort to hit that division cycle more effectively, as well as kill off cells that it can't hit during mitosis. While radiation may not kill cells in the growth cycle after one dose of radiation, multiple doses typically kill the cells. What radiation misses, the chemo should be able to pick up the slack... so this is why radiation is followed by more Chemotherapy. But because radiation can have much more longterm effects, most oncologists attempt to shrink tumors before radiation therapy to reduce the amount of damage necessary. This is why Hank will have 12 weeks of Chemo before starting his radiation... and as we call all see, it is working to our advantage! :)
I leave you with a visual aid of Hank's healing process in action. Thank you for your prayers and love. We couldn't walk this road without you all!
LL
Top photo: Hank after second round of Chemo
Middle Photo: Hank after first round of chemo
Bottom Photo: Prior to any chemo treatments
*****Disclaimer: I am not now or ever have been a scientist, biologist, oncologist, or radiologist. Any and all information in this post is based on my own understanding of the literature I have read and researched on my own journey in understanding why and how cancer affects our bodies. Please feel free to research these topics further or comment below if there is something incredibly pertinent to add... or if I have completely botched the concepts described above. Thank you. And if you could, break it to me gently. ;) LL
While the germ load in our house is decreasing, so is Hank's tumor, which continues to shrink down to reveal more of his wonderfully and perfectly made face. Praise the Lord. And with that shrinking, started the questions of: "If it is shrinking so quickly, does that mean he won't have to have Chemo as long?!" Well, here is the longest short answer I can give you. :)
So let's start at the beginning. Who remembers the Cell Cycle from your 6th grade science class? Or 9th grade biology... wherever we learned it. Only a few of you? Good, that makes me feel better, because I had to look it up too. Here is an illustration of the cycle, for those who need a refresher course.
So Chemotherapy attacks cells at the dividing stage. Some chemotherapy drugs kill dividing cells by damaging the part of the cell's control center that makes it divide, while other chemo drugs interrupt chemical processes involved in cell division. This is why Hank has several different types of chemo drugs in his therapy. And because the cells involved in the area of cancer infestation affect multiple types of tissue, there are different rates of growth the doctors have to consider in creating Hank's treatment plan. So since bone is involved... which has one of the longer growth cycles, and because cancer cells don't follow any specific growth plan, the oncologists have to be certain they can kill all the cancerous cells. This can be tricky when the chemo drugs can only affect a cell as it is splitting... meaning the drug has to be administered at the right time to affect that split cycle, meaning it needs to happen a LOT of times to ensure the drug hits the cell at the right time. Hence, the year long treatment plan for Hank, and hence the shrinking. The chemo has been able to hit the fastest growing tissues first, which are skin cells and soft tissue... so our oncologist said to expect the tumor to begin a plateau as it attacks the lengthier cell cycle tissues. (Just FYI)
As Chemo's counterpart in Hank's treatment, radiation changes the genes in the cells, typically killing them. This process also takes place most effectively during the cell division phase. The difference between chemo and radiation is that radiation is administered EVERY weekday for several weeks in a row, in an effort to hit that division cycle more effectively, as well as kill off cells that it can't hit during mitosis. While radiation may not kill cells in the growth cycle after one dose of radiation, multiple doses typically kill the cells. What radiation misses, the chemo should be able to pick up the slack... so this is why radiation is followed by more Chemotherapy. But because radiation can have much more longterm effects, most oncologists attempt to shrink tumors before radiation therapy to reduce the amount of damage necessary. This is why Hank will have 12 weeks of Chemo before starting his radiation... and as we call all see, it is working to our advantage! :)
I leave you with a visual aid of Hank's healing process in action. Thank you for your prayers and love. We couldn't walk this road without you all!
LL
Top photo: Hank after second round of Chemo
Middle Photo: Hank after first round of chemo
Bottom Photo: Prior to any chemo treatments
Wednesday, February 24, 2016
A whole lotta Praise!
This week marked our second week of Chemotherapy. Hank went to Children's Oncology for an outpatient injection of one of the three chemicals he had last week. Hank responded well to the meds and showed no symptoms this time around. This week was a tradition week, as the doctors transitioned Hank's chemo day from Monday last week, to Tuesday this week, and then Wednesday next week. His Chemo needs to be given each week on the same day, and can only falter from that day by 24 hours... so they needed a Tuesday Chemo day to bridge the gap. :)
Today (wednesday) we went in to see his ENT/surgeon who removed the biopsy to check and see how his stitches were healing. When he walked in, he stared at Hank with surprise... much like the first time the ENTs stared at Hank's lumpy nose... but this time with a joyous bewilderment! He began the sentence "Is it just me, or is?" Then he paused. And looked at us, cautious to say more in case his eyes were playing tricks on him. But we smiled in delight and said "It IS shrinking!" Dr. Berg smiled from cheek to cheek. It was such a confirming moment for us, for the Lord! If our doctor was having a "WOW" moment... we knew this was not the norm for tumor shrinking after a single week of Chemo. He just continued to smile throughout the consultation as he looked at Hank's shrunken tumor. Taylor and I could see the power of prayer not only in Hank's smaller profile, but in the expression of Dr. Berg.
As we left the office, it was so thrilling to experience such joy in Hank's progress. So off to lunch and then to Irving for a consultation with the Texas Center for Proton Therapy. Taylor and I had been praying, and asking for prayer, that we would be approved by insurance for Proton Radiation. There are different forms of radiation, but the two that would commonly be used for Hank's type of tumor are Photon or Proton. Photon radiation is less precise and the ray goes in one side and out the other, causing everything in the path to receive a dose of radiation. Proton radiation is different, in that you an create an "end point" where you direct the ray to stop. So the radiation specialist can use a computer program and details maps of Hank's tumor, to program how deep to send the proton rays... reducing the amount of unnecessary radiation other parts of his head would be exposed to. Either form of radiation would have required almost 6 weeks of therapy to kill the cancer. (This has to do with the "life cycle" of the cells, each type of cell having a different duration for how long it takes to create matter and split to make new cells.) During those 5 weeks and 3 days, Hank will need to go every weekday, once a day. It is a short process, and only takes a few minutes to actually administer the radiation... the longer part will be the prepping and making sure Hank stays completely still throughout the radiation.
So the first person we met with, was the financial counselor. She would let us know if insurance would pay for the therapy, and how much we would have to pay out of pocket. We sat down in her office and she copied Hank's insurance card as she explained that they "usually don;t have a problem getting insurance to pay for this form of radiation for kids." I held my breath as she handed us a paper to sign showing that our insurance would be covering 100% of the cost. 100%. I was blown away. Again, the Lord's hand in this was CLEARLY evident.
Next we met with the doctor who would be in charge of Hank's radiation. He showed us images of Hank's tumor and the difference between the Photon therapy plan and the Proton therapy plan... it was so encouraging to know we would be receiving the best possible care with the least amount of long term effects. In having spoken with our oncologists, we were forewarned that Hank's pituitary gland (the gland that produces growth and reproduction hormones) could very likely be in the path of radiation and therefore cease to create hormones needed for Hank to grow properly... and cease to create the hormones needed to one day have his own children. Taylor and I were heartbroken for Hank in that moment last Monday. It was when the whole "cancer" thing got real for me. But our radiation doctor gave us yet another praise... the Pituitary gland would not be effected at all but the Proton radiation! PRAISE the Lord and His wonderful mercy upon Hank! I almost leaped up to kiss Tay right them and there! Then the doctor said Hank's brain would also likely not be effected (as in an extremely thin sliver of the frontal lobe would be exposed to extremely minimal amounts of radiation)... again, Praise! We were so joy filled at the news of this. The doctor went on to explain the long term effects would be that the radiation would kill the cells that stimulate the bones in his face to grow as Hank grows. So the areas around Hank's nose, where radiation was administered, would not grow as his face did. So later on down the line, we would have to approach reconstructive/cosmetic surgery. It will also likely effect his sinus functions, leading to drainage issues, constantly running nose, or impacted sinuses, and potentially the need for dental implants (should his permanent teeth be damaged due to radiation.) Hank might incur mouth sores from the daily treatments, but they would be short term and often heal quickly in children once radiation ceases. There are a few other minor side effects, but we felt like the structures that our mighty Father spared Hank were such powerful answers to your/our prayers! We rejoice with you all in this!
Taylor and I went home encouraged by the visits we had with both Hank's doctors. What a MIGHTY God we serve and are Loved by! His Mercy is abundantly clear in Hank's life today, as is His Joy in answering the multitude of petitions you all have raised up to Him.
Thank you, Heavenly Father, giver of Life.
So lastly, as we close... we would like to express another "need." While we love that you are all very clearly loving on Hank in the midst of this trial, we would like to remind you that he has an older brother who is struggling with this reality as well. Not only in the sense of his brother has cancer, but also in that Hank is constantly receiving cards and gifts... which Corin feels left out at times.
Many of you have been including things for Corin as well, and I don't want those who have sent Hank something to feel guilty if you have not... I only say this because Corin is sensitive to the fact that Hank is the center of much of our attention lately. Reasonably so, since our lives have been consumed with tests, doctors' visits and hospital stays... but we would appreciate your help in making Corin feel loved in the midst of this too. He loves his brother, but is also an eight year old boy who is jealous when Hank gets a new action figure or special sticker book... or even just a greeting card in the mail. ;) Just to know that he too, is special and loved... that would make Corin's journey alongside Hank much easier.
Thank you, Praise the Lord, and let's keep showing down those prayers... they ARE being heard!
LL
Today (wednesday) we went in to see his ENT/surgeon who removed the biopsy to check and see how his stitches were healing. When he walked in, he stared at Hank with surprise... much like the first time the ENTs stared at Hank's lumpy nose... but this time with a joyous bewilderment! He began the sentence "Is it just me, or is?" Then he paused. And looked at us, cautious to say more in case his eyes were playing tricks on him. But we smiled in delight and said "It IS shrinking!" Dr. Berg smiled from cheek to cheek. It was such a confirming moment for us, for the Lord! If our doctor was having a "WOW" moment... we knew this was not the norm for tumor shrinking after a single week of Chemo. He just continued to smile throughout the consultation as he looked at Hank's shrunken tumor. Taylor and I could see the power of prayer not only in Hank's smaller profile, but in the expression of Dr. Berg.
As we left the office, it was so thrilling to experience such joy in Hank's progress. So off to lunch and then to Irving for a consultation with the Texas Center for Proton Therapy. Taylor and I had been praying, and asking for prayer, that we would be approved by insurance for Proton Radiation. There are different forms of radiation, but the two that would commonly be used for Hank's type of tumor are Photon or Proton. Photon radiation is less precise and the ray goes in one side and out the other, causing everything in the path to receive a dose of radiation. Proton radiation is different, in that you an create an "end point" where you direct the ray to stop. So the radiation specialist can use a computer program and details maps of Hank's tumor, to program how deep to send the proton rays... reducing the amount of unnecessary radiation other parts of his head would be exposed to. Either form of radiation would have required almost 6 weeks of therapy to kill the cancer. (This has to do with the "life cycle" of the cells, each type of cell having a different duration for how long it takes to create matter and split to make new cells.) During those 5 weeks and 3 days, Hank will need to go every weekday, once a day. It is a short process, and only takes a few minutes to actually administer the radiation... the longer part will be the prepping and making sure Hank stays completely still throughout the radiation.
So the first person we met with, was the financial counselor. She would let us know if insurance would pay for the therapy, and how much we would have to pay out of pocket. We sat down in her office and she copied Hank's insurance card as she explained that they "usually don;t have a problem getting insurance to pay for this form of radiation for kids." I held my breath as she handed us a paper to sign showing that our insurance would be covering 100% of the cost. 100%. I was blown away. Again, the Lord's hand in this was CLEARLY evident.
Next we met with the doctor who would be in charge of Hank's radiation. He showed us images of Hank's tumor and the difference between the Photon therapy plan and the Proton therapy plan... it was so encouraging to know we would be receiving the best possible care with the least amount of long term effects. In having spoken with our oncologists, we were forewarned that Hank's pituitary gland (the gland that produces growth and reproduction hormones) could very likely be in the path of radiation and therefore cease to create hormones needed for Hank to grow properly... and cease to create the hormones needed to one day have his own children. Taylor and I were heartbroken for Hank in that moment last Monday. It was when the whole "cancer" thing got real for me. But our radiation doctor gave us yet another praise... the Pituitary gland would not be effected at all but the Proton radiation! PRAISE the Lord and His wonderful mercy upon Hank! I almost leaped up to kiss Tay right them and there! Then the doctor said Hank's brain would also likely not be effected (as in an extremely thin sliver of the frontal lobe would be exposed to extremely minimal amounts of radiation)... again, Praise! We were so joy filled at the news of this. The doctor went on to explain the long term effects would be that the radiation would kill the cells that stimulate the bones in his face to grow as Hank grows. So the areas around Hank's nose, where radiation was administered, would not grow as his face did. So later on down the line, we would have to approach reconstructive/cosmetic surgery. It will also likely effect his sinus functions, leading to drainage issues, constantly running nose, or impacted sinuses, and potentially the need for dental implants (should his permanent teeth be damaged due to radiation.) Hank might incur mouth sores from the daily treatments, but they would be short term and often heal quickly in children once radiation ceases. There are a few other minor side effects, but we felt like the structures that our mighty Father spared Hank were such powerful answers to your/our prayers! We rejoice with you all in this!
Taylor and I went home encouraged by the visits we had with both Hank's doctors. What a MIGHTY God we serve and are Loved by! His Mercy is abundantly clear in Hank's life today, as is His Joy in answering the multitude of petitions you all have raised up to Him.
Thank you, Heavenly Father, giver of Life.
So lastly, as we close... we would like to express another "need." While we love that you are all very clearly loving on Hank in the midst of this trial, we would like to remind you that he has an older brother who is struggling with this reality as well. Not only in the sense of his brother has cancer, but also in that Hank is constantly receiving cards and gifts... which Corin feels left out at times.
Many of you have been including things for Corin as well, and I don't want those who have sent Hank something to feel guilty if you have not... I only say this because Corin is sensitive to the fact that Hank is the center of much of our attention lately. Reasonably so, since our lives have been consumed with tests, doctors' visits and hospital stays... but we would appreciate your help in making Corin feel loved in the midst of this too. He loves his brother, but is also an eight year old boy who is jealous when Hank gets a new action figure or special sticker book... or even just a greeting card in the mail. ;) Just to know that he too, is special and loved... that would make Corin's journey alongside Hank much easier.
Thank you, Praise the Lord, and let's keep showing down those prayers... they ARE being heard!
LL
Thursday, February 18, 2016
Living with a cancer patient
These past two weeks have been pretty surreal. Had you told us our new year's resolution would be to beat cancer... we would have probably stared at you with the same numbed expression we had when the doctors presented the possibility to us only two short (read EXTREMELY long) weeks ago. Up until now, none of it has felt real. We have shuffled from doctors to specialists to doctors, one hospital room to another. It has been non-stop biopsies, blood tests, and imaging. We have seen more nurses, technicians, specialists, and doctors than I can count on my fingers and toes... and yet this has only just begun. Today we got a call from the Proton Radiation clinic that we hope to qualify for with our insurance. If not... we are willing to beg, borrow, and scrape for Hank to receive this much more pinpointed radiation therapy to reduce the amount of permanent damage that will result from this drastic, but necessary therapy. So prayers that Hank's insurance would approve, are requested and deeply appreciated.
One of the aspects of living with a cancer patient that we are being thrown off by is the NEED to be hypochondriacs. Anyone who knows Taylor and I, know that we are pretty laid back about germs. We let our kids eat off our floor, rarely wash hands, and share food with strangers. (It's a cultural thing we picked up in Korea.) ;) But with Hank's immune system depleting after Chemo treatments... we have to consider him fragile, susceptible to even the tiniest of colds. This has put a damper on our social life. We now find ourselves feeling like the pediatrician nurses at our doctor's office: "Have you traveled outside the U.S. in the past 30 days? Have you had any recent fevers, nausea, vomiting, or sickly symptoms? Have you been in contact with anyone exhibiting any of these symptoms? etc..."
It goes against my nature. Even having the kids wash their hands before meals and snacks... I know, bad mom, but hey... they have been healthy up to now. SO... we are relearning hygiene for the sickly. No sharing cups, no tap water for Hank, no fresh fruit/veggies without a deep cleaning, no raw meat, deli meat, raw eggs, soft cheeses... the list goes on. The most heartbreaking... no digging in the dirt. Poor kid. Also, he is not allowed near construction sites... and guess what is happening two doors down? So guess who can't go outside to play? Yep. Hank is confined to the house for now. Because indoor play places are out of the question, all his friends have runny noses, coughs or the stomach bug, and it has been so windy that he can't go out due to the spores blowing around in the air. Lucky for him, we were given a generous gift to be able to buy a Wii game system. Now he at least has something "special" to do when the days inside get long. He and daddy have been playing a little in the mornings or afternoons... and when Corin is done with homework, the boys enjoy a little play time before dinner.
Now I know you don't want to read a journal of what our days look like each time, but I say the above to give you an idea of what our new reality is... and in turn, these are the needs we foresee for now. The plan is to go in for Chemotherapy every Wednesday... next week it will be Tuesday, but every week thereafter will be on Wednesday for the next year. (Or until our doctor changes the day) With that being said, Wednesdays are going to be very busy for us. Since we have to try and keep the house as sterile as possible, Wednesdays will be consumed with the cleaning that can't be done with Hank at home. Dusting, spraying down toys, and cleaning the mold off the window sills (I need some suggestions on how to eradicate that... we have a very damp home.) and changing air filters. Taylor will likely take Hank to chemo, while I clean (hopefully with the help of friends and family), as the girls are at a sitters (again, need help), and then we have to eat dinner. (yet again, hopefully with help from friends and family.) Wednesdays will definitely be our big need days. I set up a planner on caringbridge.org (just search "Hank Lett" for his page) if you are interested in helping out in these ways.
Obviously there will be other needs, like supplies that we would normally not be investing in, babysitting we wouldn't normally need, understanding of last minute changes, and much more. But our biggest need... PRAYERS. Please partner with us in praying for Hank's complete healing and eradication of cancer. Pray for wisdom for Taylor and I as we make hard decisions in the midst of waiting for that. Decisions that may change the course of Hank's future. Decisions that both break our hearts, and give us hope for a life for Hank. Decisions that you may not agree with if you don't have all the facts... I wish I could share all the facts with you. Information is being shot out at us as if we were expecting the gentle spout from a water fountain, but receiving the face numbing... neck jerking blast from a fire hose. Our world has been ripped apart and pieced together with sticky notes... they are barely holding things together and we never know when the temporary glue will release the bond. So please don't misunderstand our lack of responses for not caring. Or our failure to acknowledge your gifts/cards/acts of kindness as ingratitude. We are treading water, staying afloat, and some days better than others. We love you all and appreciate all you are doing for us... but most of all, we appreciate your prayers.Those prayers help us tread that water and stay afloat. Thank you, to all those keeping us in their thoughts and prayers... thank you. We simply can't say it enough.
LL
One of the aspects of living with a cancer patient that we are being thrown off by is the NEED to be hypochondriacs. Anyone who knows Taylor and I, know that we are pretty laid back about germs. We let our kids eat off our floor, rarely wash hands, and share food with strangers. (It's a cultural thing we picked up in Korea.) ;) But with Hank's immune system depleting after Chemo treatments... we have to consider him fragile, susceptible to even the tiniest of colds. This has put a damper on our social life. We now find ourselves feeling like the pediatrician nurses at our doctor's office: "Have you traveled outside the U.S. in the past 30 days? Have you had any recent fevers, nausea, vomiting, or sickly symptoms? Have you been in contact with anyone exhibiting any of these symptoms? etc..."
It goes against my nature. Even having the kids wash their hands before meals and snacks... I know, bad mom, but hey... they have been healthy up to now. SO... we are relearning hygiene for the sickly. No sharing cups, no tap water for Hank, no fresh fruit/veggies without a deep cleaning, no raw meat, deli meat, raw eggs, soft cheeses... the list goes on. The most heartbreaking... no digging in the dirt. Poor kid. Also, he is not allowed near construction sites... and guess what is happening two doors down? So guess who can't go outside to play? Yep. Hank is confined to the house for now. Because indoor play places are out of the question, all his friends have runny noses, coughs or the stomach bug, and it has been so windy that he can't go out due to the spores blowing around in the air. Lucky for him, we were given a generous gift to be able to buy a Wii game system. Now he at least has something "special" to do when the days inside get long. He and daddy have been playing a little in the mornings or afternoons... and when Corin is done with homework, the boys enjoy a little play time before dinner.
Now I know you don't want to read a journal of what our days look like each time, but I say the above to give you an idea of what our new reality is... and in turn, these are the needs we foresee for now. The plan is to go in for Chemotherapy every Wednesday... next week it will be Tuesday, but every week thereafter will be on Wednesday for the next year. (Or until our doctor changes the day) With that being said, Wednesdays are going to be very busy for us. Since we have to try and keep the house as sterile as possible, Wednesdays will be consumed with the cleaning that can't be done with Hank at home. Dusting, spraying down toys, and cleaning the mold off the window sills (I need some suggestions on how to eradicate that... we have a very damp home.) and changing air filters. Taylor will likely take Hank to chemo, while I clean (hopefully with the help of friends and family), as the girls are at a sitters (again, need help), and then we have to eat dinner. (yet again, hopefully with help from friends and family.) Wednesdays will definitely be our big need days. I set up a planner on caringbridge.org (just search "Hank Lett" for his page) if you are interested in helping out in these ways.
Obviously there will be other needs, like supplies that we would normally not be investing in, babysitting we wouldn't normally need, understanding of last minute changes, and much more. But our biggest need... PRAYERS. Please partner with us in praying for Hank's complete healing and eradication of cancer. Pray for wisdom for Taylor and I as we make hard decisions in the midst of waiting for that. Decisions that may change the course of Hank's future. Decisions that both break our hearts, and give us hope for a life for Hank. Decisions that you may not agree with if you don't have all the facts... I wish I could share all the facts with you. Information is being shot out at us as if we were expecting the gentle spout from a water fountain, but receiving the face numbing... neck jerking blast from a fire hose. Our world has been ripped apart and pieced together with sticky notes... they are barely holding things together and we never know when the temporary glue will release the bond. So please don't misunderstand our lack of responses for not caring. Or our failure to acknowledge your gifts/cards/acts of kindness as ingratitude. We are treading water, staying afloat, and some days better than others. We love you all and appreciate all you are doing for us... but most of all, we appreciate your prayers.Those prayers help us tread that water and stay afloat. Thank you, to all those keeping us in their thoughts and prayers... thank you. We simply can't say it enough.
LL
Monday, February 15, 2016
First Day of Chemotherapy
We arrived today for Hank's first day of Chemo. Having not really spoken with the doctors since hearing the pathology reports over the phone Friday, we were eager to hear the full game plan and get a better grasp of what our foreseeable future would look like.
After speaking with our Oncologists, we are now mentally grappling with the 42+ weeks of Chemotherapy, combined with 5-6 weeks of Radiation therapy somewhere in that mix, which Hank will undergo. With the expected delays of Hanks weakened immune system, we are realisitically looking at roughly a year before the finish line is in sight.
New realities for us will include avoiding crowds, taking meds more regularly, weekly visits to Childrens, giving Hank shots from home, preventing Hank from digging in the dirt, keeping an eye on Hank's temperature, wearing masks around sick people, planning our lives around treatments, investing stock in sunscreen and sanitizer, bottled water, looking at Hank's poops (okay, he forgets to flush a lot so this is more regular than not), and a multitude of other things I never anticipated being a daily "thing."
We will alternate between the types of chemotheraphy Hank will receive, in order to reduce the amount of toxicity he is exposed to. So some weeks we will be in and out in a day, some weeks we will have to go in 5 days a week for outpatient injections. The details on radiation are still unclear for now, beyond that we know he will need it. While the side effects can be heartbreaking, the likelihood that the cancer would return is almost certain without radiation. Hank will need cosmetic surgery in the future, but we'll cross that path when we get there.
Starting next week, Wednesdays will be our Chemo days so that both our oncologists can pop in and check on us. Today one of them made a special stop by to see us and help us get settled. We are continually thankful for our gracious and compassionate doctors. They felt our pain as we took in all the bad news from the morning, and handed us tissues and made themselves avaiable to us anytime.
Perhaps in another post I will share more details of what is to come, but for today... this is enough and will give you all a broad idea of the journey we have all entered into with Hank.
LL
After speaking with our Oncologists, we are now mentally grappling with the 42+ weeks of Chemotherapy, combined with 5-6 weeks of Radiation therapy somewhere in that mix, which Hank will undergo. With the expected delays of Hanks weakened immune system, we are realisitically looking at roughly a year before the finish line is in sight.
New realities for us will include avoiding crowds, taking meds more regularly, weekly visits to Childrens, giving Hank shots from home, preventing Hank from digging in the dirt, keeping an eye on Hank's temperature, wearing masks around sick people, planning our lives around treatments, investing stock in sunscreen and sanitizer, bottled water, looking at Hank's poops (okay, he forgets to flush a lot so this is more regular than not), and a multitude of other things I never anticipated being a daily "thing."
We will alternate between the types of chemotheraphy Hank will receive, in order to reduce the amount of toxicity he is exposed to. So some weeks we will be in and out in a day, some weeks we will have to go in 5 days a week for outpatient injections. The details on radiation are still unclear for now, beyond that we know he will need it. While the side effects can be heartbreaking, the likelihood that the cancer would return is almost certain without radiation. Hank will need cosmetic surgery in the future, but we'll cross that path when we get there.
Starting next week, Wednesdays will be our Chemo days so that both our oncologists can pop in and check on us. Today one of them made a special stop by to see us and help us get settled. We are continually thankful for our gracious and compassionate doctors. They felt our pain as we took in all the bad news from the morning, and handed us tissues and made themselves avaiable to us anytime.
Perhaps in another post I will share more details of what is to come, but for today... this is enough and will give you all a broad idea of the journey we have all entered into with Hank.
LL
Sunday, February 14, 2016
Pathology results are in
Thursday night we were released to go home as we awaited the final results of the biopsy. We met with our ENT that afternoon to discuss surgery options and to meet him in person. Friday morning we met with our plastic surgeon to see what reconstructive surgery might look like for the future. Then friday afternoon, we loaded up the "blue limousine" van, and headed out towards Tyler for a quick weekend trip. On our drive out, we received a call from the oncology department at Childrens. They let us know our pathology reports were in, and that Hank has Alveolar Rhabdomyosarcoma... ARMS for short. While it wasn't what we had collectively been praying for, Taylor and I agree wight he doctors... that this is the best case of a "worst case" scenario. What I mean by that, is the Alveolar RMS requires a more assertive treatment plan, but Hank is incredibly healthy, the cancer has not spread, we have incredible doctors/nurses/staff/hospital, a HUGE support system, and we live close by the hospital. Most importantly, Hank is in the care of the GREAT Physician. It is hard to not see the multitude of blessings in the midst of this diagnosis.
We head in tomorrow to start Hank on Chemotherapy around 9am. We'll also find out more of what the treatment plan will look like and meet our "team". Lots of unanswered questions still remain, but I have a feeling some of that will change tomorrow.
I know a lot of you have been asking how you can help, and I am sure after we understand what life will look like for us/Hank, that we will have a much clearer idea of how to implement that help you desire to provide. I imagine much of it will look like babysitting, meals, and school pick-ups. But we will also need people to come over and hang out, play games, and pretend for a night that we are not the token cancer-stricken family. We will need some of you to cry with, but also some of you to laugh with. We might need you to come play wii with us while Hank recovers, and we may need you to leave us be for a bit. Prayers, of course, are always more than welcome... but for now, we ask people to please not offer advise on alternative treatments (This is a very rare form of cancer and the treatments Hank is about to receive are what we have given the doctors consent to do in order to give us back our Hank.), attempt to connect us with other survivors of cancer (we understand you mean well in trying to create a support system for us, but we don't want any false expectations and we need to figure out how WE can deal with this journey... not someone else's journey) or surprise visits (there may well be days we are simply not in the mood to entertain or be seen... so please call or text to set up a time to visit.) Now I must say that these are not in any way pointed at anyone specific. We know full well that you all mean the best for us through your actions and words. And we LOVE you for loving Hank and us... but it is overwhelming right now. We have barely had time to digest the news about our sweet Hank and we can't really make time to consider alternative options, connect with new people, or handle surprise visitors. So please know that we don't say this to offend anyone who has loved us enough to present these kind gestures to us, we are simply letting you know we just are not ready for them at this time.
We would also like to take a moment to say thank you. To each and every one of you who are praying for Hank and our family, those who have given physical and financial gifts, and those who have given of their time to help. We would be lost without our friends and family. You have no idea how blessed we recognize ourselves to be. Much love, LL
I will leave you with a couple pictures of the fun times our little family had this weekend. :)
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