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.

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.
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.

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! 
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