Thursday, December 15, 2016

Crushing Cancer-

To say that this week has been an emotional one in the Lett home, would be an understatement. We started off the week with Lena accidentally cutting off the tip of Ruby's right ring finger in the hinge side of a hall door. It was traumatic for everyone. There was blood, there was a screaming poor baby, there was mom freaking out and frantically looking for the Dermoplast and a prepping a cool wet washcloth, there was dad trying to collect information from the crazy mom in order to decided which ER we should speed to, there was Lena who was in shock and trying to hide, Corin who was crying and repeatedly asking if Ruby's finger was gone... and then Hank who was pretty curious (he is pretty familiar with hospital scenes.) We all piled in the car, Ruby on my lap, and drove to the hospital nearest our home. It is not a great hospital... in fact, I don't think I would recommend it to anyone, but it was the "in the moment" decision we made. They got Ruby in and looked at her finger, decided we needed to get X-rays, and then upon finding no broken fingertip... they proceeded to dab it with a little iodine and bandage it up like a preschooler. I was dumbfounded. They prescribed antibiotics, ibuprofen, and referred us to an Orthopedic specialist. We got home, fed everyone, and of course Ruby ripped the dressings off... so I had to re-bandage her little finger. she was exhausted, we were exhausted. She seemed fine and happily finished out her day. The next morning, we called Children's Orthopedic specialist (we are partial to Children's doctors) and tried to get an appointment that day. They ended up recommending we take her to our pediatrician, who recommended we take her to the ER there at Children's. Tay took her in Monday at 1:45, and they got home at 12:15 that night. Ruby ended up needing to have a little bit of her fingertip/bone removed in order to clean and seal it properly... they were not impressed with what the previous ER had done with our sweet Ruby's finger. After it was cleaned and sealed, they placed a mitten cast over her hand, forearm and halfway up her bicep. (And she is really dangerous with that hard cast... I think just about everyone has gotten clobbered in the face at least once... I currently have a fat lip from one such occurrence.) She remains on antibiotics and goes back in on Tuesday of next week to a plastics specialist in Children's. We'll see what they think needs to be our next step towards healing and regrowth.
So after all the Ruby drama settled down, we were able to focus on what you came here to read about... Hank's results from the MRI!!! We went in Wednesday for the normal blood draw/labs. Then we sat down with two of Hank's doctors and they explained the results of the MRI with us. They said it looks almost identical to the scan done in August, which is good. They see no new growth, but there is still some areas that show radiation scar tissue/ dead tissue. They said it is unlikely this will go away any time soon if at all, but that it is not a concern to them... meaning he won't need surgery to remove the spots that showed up in imaging. So... Hank is Cancer FREEEEEEE! We felt a huge release when we heard the news. Then we had time to ask questions about what is next. I felt like some of that deep breath I had let out, seeped back into my chest and is decidedly clinging to the interior walls of my lungs. It is hard to feel like I can let go of the fear of cancer when we are told the first 6 months after chemo is typically when we would most likely see regrowth.
 So I ask that we all pray against the regrowth of cancer cells.
She said it is uncommon with this type of cancer, but my clenched jaw and tight lungs are pretty good indicators that I have some fear in this area.
So moving forward... we will visit the oncologists every three months for the next year. Each time, Hank will be sedated and have an MRI and labs drawn, then we will have a follow up appointment or phone call. In the next week or so, we will be getting a call to schedule surgery for removing Hank's port. We are thinking it will likely be after Jan 7th. We have to remain cautious of Hank's immune system for the next three months, maintaining his restricted diet, limiting his exposure to large crowds/construction sites, and staying away from indoor playgrounds. He will remain on antibiotics for the next three months as well, while his immune system has a chance to come back to where it should be. So with flu and cold season upon us... I foresee a lot of homebody activities.
At some point in the future, he will most likely have to have reconstructive surgery/prosthetics for his face. It sounds pretty heavy, as our doctor mentioned they will have mandatory psychologist meetings with us and Hank as part of the process. I am trying to avoid thinking about this for now... which is more easily done considering it will be a while before we will need to start those discussions.
For now... we are working on passports for the kids so we can continue along with Make a Wish plans and we are trying to get our lives back to some small slice of normal.

We are so thankful for those of you who are on this journey with us. For now, the hard parts are over and with any luck... Hank won't even remember the Chemo days. So with NO DOCTORS APPOINTMENTS FOR HANK in the next two weeks... we are feeling preeeeeetttttty good! (Never mind that Ruby has a few appointments in our future.)
Hank is CANCER FREE. Good Lord, that feels lovely to say aloud.

Wednesday, December 7, 2016

As we wait...

A lot has happened in the Lett household since I last updated. We have moved (so if you need our new address, please get a hold of me via Facebook, email or phone.) and are settling into a new space. It was a slightly chaotic, mad dashery dort of move... but we are no longer under the reign of our previous landlord, so things are looking up! Hank's counts have been good every week we have lived here so far ( 3 1/2 weeks now). Hank had his VERY LAST CHEMO the Wednesday of Thanksgiving. He had the heavy duty stuff, the V.A.C., and so he stayed overnight and came home with daddy on Thanksgiving morning. We threw together a last minute TG dinner for our little family of 6 and had an overall pleasantly quiet holiday. We were certainly FULL of thanks for Hank being done with Chemo. With the V.A.C. chemo, comes the immune crash, so for the last time, we deep cleaned the home and waited out the 7-10 day post-chemo crash period. Hank didn't catch anything and his counts remained pretty good last week and this week. But THIS week... Hank went in for imaging!!! Today Hank had an MRI of his head and neck to confirm what his doctors seem pretty confident in... that he is cancer freeeeeeee. Oh I can NOT wait to hear those words in celebratory confirmation!!! We should have the results by next Wednesday. There are no longer weeks, than those  in which you wait for a cancer verdict. I remember in all vivid angst, the days we awaited Hank's diagnosis. These coming days of waiting are less nerve wracking, but strangely still full of angst.  This year has been a mix of so many emotions. I never knew I could feel so much in such arrays of highs, lows, resentment, and joy. There are so many emotions that have passed through our hearts, prayers, tears, and laughter. Hank has gone from fearful to resigned to sheer bravery to true contentment. He has shouldered a lot, but he is such a joyful little trooper. I have learned so much from him and his battle. My kids have always been great instruments in learning the melody of this life. I hope the Lett melody resounds in joyful notes, rather than sorrowful or melancholy tunes. I hope the world knows we choose to break through the sorrows of our lives to see the Sun/Son light our path. I can't deny that I have struggled with bitter feelings, resentment, and frustration at God. But in my deepest parts of the heart, I simply KNOW we were carried through this year on prayers and petitions. I KNOW we were mourned over and alongside by someone who loves us dearly... I KNOW it is our Savior, who provided all of you to us... in all forms... far and near. I didn't always "feel" loved "directly" from the Lord, and yet I did... because we felt deeply loved by all of you. Watching people pour themselves out for Hank, for our family. You have no idea how much that ministered to my dark thoughts. I can never thank you all for the love you so freely gave, without expectation, without fully knowing how it may help, selflessly, sacrificially, and sincerely. You all were Christ to me, to Hank, to our family.
And so we wait...
And I wait... to send you an update!!!
Oh, and Hank's make-a-wish looks like it will be a cruise!!! He is super excited! We have to get the kids passports, so that is the next step and then on to planning dates and details!

Hank's last day of Chemo... we all went up and took him lunch.
 Hank is hoping for cllllllll clear! Okay, we all are.

Wednesday, November 2, 2016

wishes, and prayers, do come true!

So the past couple months have been emotional roller coasters in the Lett home. We started off October assuming we would be able to ride out Hank's Chemo and treatments in our current home. Soon, potential buys were in and out... along with their inspectors. Our landlords had told us that we could stay month to month in the midst of the sale and that the next owners would like to retain the renters. Great! New landlords, same home. perfect. Until... it came to our attention that there was still a mold issue. So inspectors came and did a thorough (3 hours) inspection and sat down with us to explain all they found. They also took samples, which came back within the week to confirm we had a major mold issue still thriving under the home. Luckily, our interior portion was not affected yet, and all our cleaning was keeping the mold at bay. The same week we found out about the mold, we got an unexpected call. Make-A-Wish North Texas had accepted Hank into the program and would be granting him a wish!!! We were so excited for him!
Emotions continued to rise and fall with our landlord situation. We sought legal advise, and tried to pray through what was "right" for us to do. Our doctors consulted us, friends and family consulted us, church family consulted us. It was hard to know how to feel about legal actions. By the end of the month, despite having told us we could rent month to month, we were given a letter letting us know we needed to be out by the end of November. My heart sunk. Hank's final chemo was scheduled for the week of Thanksgiving, but it was the really heavy duty cycle. So he would be plummeted into an immune deficit in the midst of a move. It was clear we needed to find a place ASAP! We want to be moved out before his last Chemo so we can have him settled and the place sanitized and ready for him when he comes home from the hospital. We want a safe place for him to recover and rest, not a dusty, box cluttered, unwelcoming space. It is stressful. We are in the application process now, so please be praying for a home. Our financial situation over the past year of living off savings and generous gifting, have made us look a little unstable on paper. :/ So we are trusting the Lord to lead us to lease agents who will have mercy on us and our situation and help us to negotiate terms that work for both us and the owner.
In other, more exciting and joyous news... Hank met with his wish granters on Tuesday! They had Taylor and I fill out paperwork while they interviewed Hank and got to know his likes and dislikes. He is such a social person. It is hilarious to listen to him talk with adults. His granters were two young women (in twenties?) Abby and Alise. They asked him what his favorite color, superhero, animal, food and even candy was. He asked them the same questions right back, and then got up to go get his candy from trick or treating. He brought the bag in and asked each of the gals to pick out whatever they wanted. They hesitated to take his candy and then he began digging through and handing them the type of candies they had said they liked. Nerds were Hank's favorite candy (that night) and so were Abby's, but Hank offered her one of the boxes of nerds in the bag and asked which color she preferred. She was visibly touched by his generosity. Then he prodded Alise to chose "her very favorite" candy too. She smiled and looked at me in shock. a good kind of shock. It was a sweet moment, watching Hank give up something he enjoyed for the joy of someone else.
Then the girls started to dig into Hank's wishes. We were told they would ask about three ideas, but Hank kind of honed in on one specific wish most of the time they spoke. So Abby and Alise began dissecting the wish.
A: Hank, what would you wish for? It can be anything!Nothing is too big of a wish.
H: I want to ride on a water slide.
A: Where do you think the water slide is?
H: On a boat.
A: Is there more than one water slide?
H: Oh yes!!!!
A: And what kind of boat is it?
H: It's a pirate boat.
A: Aren't pirates scary?
H: No.
A: What else would you do on the boat?
H: I would eat candy. And pork sandwiches. And ice cream.
A: Would you go fishing on this boat?
H: um, no. I don't know how to fish.
A: Would you like to learn?
H: Well, yeah.
A: Where would this boat go, Hank? Would it go somewhere warm or somewhere cold?
H: I think it would go to and African forest.
A: (laughing) DO they have forests in Africa?
H: well they have trees!
A: yes, they do. I don't think any boats from America, that have water slides, go that far.
H: Yeah, Africa is really kind of far.
A: Where else might the boat go?
H: I don't know. it would just be in the water.
A: Would you want to meet the captain?
H: oh there is no captain.
A: Well who will drive the boat?
H: the pirates.
A: oh. ok. Is it a big boat or a little boat that you imagine?
H: it is preeeeettty big.
A: that sounds fun
H: I know. That is why I wished it.

A: so if you could wish for something else, not slides on a boat, what would it be?
H: I guess a ride on a camouflage train with my family.
A: a camouflage train. Have you seen one before?
H: well no. but I have in my mind!
A: where would the train go?
H: To alaska.
A: and what would you see in alaska?
H: I would see mammals.
A: oh, what kind of mammals?
H: nice ones.
A: Would you see whales? Or wolves? Or bears?
H: well, maybe.
A: would you want to go fishing in alaska? They have lots of fish!
H: yeah, but only for big fish.
A: and would you want to see a whale?
H: that would be cool.

Hank started to lose interest and started using for dinner. Abby and Alise gathered their things and let us know what to expect next in the process. They laughed about how creative Hank was with his wish. They told us that 90% of the time, kids are yelling "Disneyland" before they even get fully in the door and that it was fun to actually get to weed through Hank's fun wishes!

So after a long month of stress with housing stuff, it was so refreshing to see prayers being answered, and wishes coming true.


I leave you with some Halloween pictures of the kids.
Corin was an "Army Guy"

 Hank went as a power ranger with a padded chest to protect his accessed port from getting bumped.

But then went as Aang from Avatar to Chemo.

Lena didn't want to dress up, but got in the spirit earlier in the week and created a "Corpse Bride" smile.

And Ruby set out in a vintage 1982 Cowboys shirt that her daddy wore as a baby. We called her "Ruby DorLett"... even though her figure would suggest line backer, rather than running back. ;)

Tuesday, October 4, 2016

Looking back, and looking ahead

As I look back on the past 7 months, I am in awe of the progress we've seen. Hank's tumor went from huge to nonexistent... literally. We had an MRI done a few weeks ago (sorry for the delay in updating you all. We had a few birthdays to contend with.) and the results came back. The doctors said the tumor is GONE, but that some radiation "residue" was still showing up on the scan. While we aren't exactly sure how to explain that to you... because we weren't exactly given a vivd description ourselves... we did anticipate there being lingering effects from radiation.
Now, having said that the tumor is gone, I should explain that this doesn't mean the cancer is gone. While an MRI was performed to determine the size of the tumor, we did not have a CT or PET scan done, which would have shown cellular imaging. Those will be done in December when we do what is hoped to be our final round of labs and imaging.
So Hank is tumor free, but not necessarily cancer free.
We are now in our third trimester of Chemo. So Lord willing, Hank will receive his FINAL Chemotherapy the week of Thanksgiving (How appropriate!!!!!) and then we will let his body recover from that heavy hitting round before they begin having all the lab work, imaging, consultations and whatever else we will need to do (surgery to remove Hank's port). We are pretty sure we should be sitting down with doctors the week before Christmas to hear all the imaging/lab results. SO... if all goes as we hope it will, we will be ringing in the new year with a happy, cancer free Hank!

I wanted to share a glimpse into the type of patient Hank is...
So a couple weeks ago, Hank was going in every week day for 90 minute Irinotecan injections. Taylor is taking classes this fall and needed someone to come up and take over with Hank so he could get to school. SO my dad came up one day and Hank was smiling and happy-go-lucky. Dad asked the nurses if he was always in such a good mood. The nurses all chimed in that "oh yes! Hank is the best patient!" They have been known to fight over who will get Hank when he comes in, because he is so awesome. Hank has developed a "happy place" in his mind for when he receives shots or has his port accessed. It is the Camouflage Train, and he pretends he is getting on board with his whole family! Hank barely even bats an eye at needles anymore.
My mom ended up covering for Taylor on another day that same week, and she had a similar experience. The nurses and staff all love Hank. He is a "model patient!"
Hank has also been known to comfort other kids when they are in for treatments... even kids older than him.His conversation recently went something like this:  "It can be kind of scary when they poke you, but they just want to help you and make you feel better... so if it helps, you can always close your eyes and think about something happy... I think about riding a camouflage train with my family. It is such a cool train!"

Hank is also seeing the bright side in his hair falling out again. We buzzed his head and he looked in the mirror. "Mom, for Halloween, I want to be the Avatar! You can just draw a blue arrow right here on my head! It will be soooooo cool!"
He will make a great Aang. :) (Feel free to google it, but I will leave you with a picture of the Avatar!
P.S. Hank turned 5 years old!!!!! on Sept. 26. And Corin turned 9 this past weekend! Time marches on. :)

Thursday, August 18, 2016

Summer Chaos

Summer has been a chaotic season for the Lett family. Hank has continued Chemo rounds since finishing radiation and ended up having to miss a treatment in early July due to low white cell counts. So that pushed back his treatment calendar by a week. The oncologists had told us to expect delays, but since we hadn't had any yet, and Hank was doing so well, we just assumed he would keep sailing through. We were wrong. We have been trying to keep him healthy and eating well, so that he can hopefully stay on track for the rest of his treatments. The mold issue in our home has made that an almost impossible task as of late.
You may remember that back in February we scrubbed our home and let our landlord know that there was a mold issue and that it needed professional remediation for the sake of Hank. With his immune system so low after treatments, mold spores that enter his lungs could potentially latch on and begin to grow. Our landlord seemed to understand the urgency and began adding additional vents to the foundation, as well as sucking out the moist air with industrial fans. We assumed he would continue in pursuit of remediation. Once radiation began, we were pretty well consumed with Hank's treatments and getting Corin finished up with the semester and didn't think to "babysit" our landlord on the mold issue.
Our landlord apparently thought that having added the vents, he had "taken care of the issue" and that any further mold was likely a result of something we were doing wrong. On July 15th, we noticed mold forming on a vent cover for our central air system and immediately removed our family from the home for fear that there could be mold circulating in the air conditioning. We contacted our landlords once again, notifying them we would be out until the issue was professionally resolved and testing to ensure the remediation was done. A week later samples were taken and came back that indeed there was a mold issue. After having companies come to give estimates for the work needing to be done, our landlords finally chose a contractor and work began last Wednesday. We were then notified there would be a slight delay due to having found mold issues with a part in the AC unit. The remediation is set to finish on Thursday and samples will be taken shortly after. We are hoping the lab will rush the results and that we can move back in this weekend, as we have been out of our home for 5 weeks on Friday. We will have to get in the home and do a deep clean prior to Hank moving back in... meaning wiping all surfaces, cleaning all toys, and washing all our dishes to ensure there is no residue on anything he would come in contact with. We have already removed all fabric items and I have been washing, drying, folding and purging like a mad woman for the past week.
Our family has shifted from home to home during these past 5 weeks. And currently, Taylor and Hank are at one home, and I am at another with the other 3 kids. It is not ideal, but it is the safest option for Hank. Our landlords have been very resistant to understand our perspective in all this nomadic chaos. It has been hard to maintain a courteous and patient attitude with them. We are potentially facing the need to enter legal proceedings to be reimbursed for rent, which is a whole other level of chaos we were not prepared to have to face this year.
 We are mentally, physically, and emotionally drained. There is so much we can't possibly share in a blog, but I am begging that you pray for our housing situation to resolve peacefully and quickly. We simply can not afford to move at this point in time. And yet, our landlords are making it very difficult to consider living where we are long term amidst this high tension. Please pray that the samples come back quickly and come back clear after remediation is over. Pray for our strength and endurance. Pray for our attitudes towards our landlords. Pray for our decisions going forward as their tenants. Pray for Hank to remain healthy in the midst of all this transition and moving. Pray for our kids as they go through all this change. Pray for it all. Thank you. Thank you. Thank you.
As we approach the end of August, the next month to emerge will be September... meaning despite all the hard summer stresses, we will celebrate a landmark day. September 26th, Hank will turn 5 years old. I can't wait to celebrate that day with him. I can't wait to let him choose his birthday dinner, and favorite cake and just celebrate his little life. It is hard to think all that has happened in the past five years, starting with his birth story in South Korea. So many emotions. So many memories. We all just love this little person so much and know he will be, and have, a huge testimony to the faithfulness of our mighty God.
Praise Him.

Thursday, July 28, 2016

Time marches on...

It has been a long summer. I have been trying to find the time and motivation to write an update and both seemed to elude me. Last time I updated, we were in the thick of radiation with Hank. He finished radiation on June 22. Here's the video of Hank ringing the commencement gong... I can't guarantee the quality... but if you really want a better quality version, feel free to email me.

It was a bitter sweet day. His treatment was done, but he still had to recover from mouth sores and fatigue... plus, the week he finished radiation (which he went to every weekday for almost 6 weeks) was a week he had Irinotecan injections for chemo (meaning he had to go every day for chemo that week). This meant that for 6 weeks straight, Taylor and Hank had to trek out to Arlington and/or Dallas every week day for treatments.
We were incredibly thankful for the financial support of those near and far, which made it possible for Taylor to not have to worry about working on top of taking Hank to treatment. Thank you soon much to all who have prayed for us and paid for us to make it through that demanding time.
Since radiation ended, Hank has continued on his chemo plan (set to finish around Christmas... the week of, if he stays on track) which has a few weeks off here and there. As we are at the halfway point of his chemo calendar, it is crazy to think back on the journey to now. It is crazy to think we somehow raised up a little baby girl, who is now six months old and the cutest little chunk ever. It is crazy to think we somehow managed to get our eight year old to and from school everyday through the second semester. It is baffling to think we managed to somehow juggle life, kids, work, and people in the midst of all of the heart-break.
This summer has been hard. Summers always are... school is out, kids are hot, inside, and bored... always bored. haha. My fare skinned kids burn if out too long, it's too hot to play outside, we don't have a pool, sprinklers lose their charm quickly, water balloons disappear quicker than they can be filled, reading is "no fun" all of a sudden, movies and tv all day long make for rotten attitudes, we can't do indoor playgrounds because of germs, we can't do public pools because of germs, we can't go to water parks because of germs... I could go on and on. Visiting friends is tricky... we have been canceled on many times due to "sniffles, sneezes, mild coughs, and not feeling well." I am thankful. I am thankful my friends care enough about our Hank to cancel. But I can't lie, it gets lonely. There are days I daydream about hosing down indoor playgrounds with sanitizer so that we can safely take Hank out to play.
Speaking of safe places to play, you might remember we had a mold issue with the house we rent earlier this spring. Well... our landlord added extra vents tot he foundation, and used a huge fan to suck out the moisture under the house. We cleaned the windows and removed all the blinds that had mold. We also scrubbed walls and bought shelves to create ventilation in the closets. We run air purifiers round the clock... and yet, when Taylor and I were about to set off on a short weekend getaway (Thank you mom and dad for offering to & watching all the kids), we found mold on a vent cover. So, knowing there had never been any formal inspection as to whether the daunting mold issue under the house actually was resolved... we made it known to our landlords that we NEEDED a professional to come out and let us know what we were dealing with. We needed to know what kind/ where/ how much/ and how to get rid of the mold. So, our landlord got a professional out and after waiting for the results, we finally got some spore counts and species. We asked our doctor what these numbers/varieties meant for Hank. And since he just received the big V.A.C. (heavy duty) check last week, they wanted us to get Hank out of the house. So Taylor and Hank are in quarantine at Tay's parents. I am holding down the "not dangerous to normal immune systems" fort with Ruby, Lena, and Cor. And so we shall be, until we hear the plan of action for removing the mold. Not sure where we will stay while the remediation happens, but with Hank's immune system on the downward slope, we have to be careful as to where and what we expose him to.
The V.A.C. drops Hank's ability to fight off disease about 7-10 days out from date of receiving, and the further along in treatment... the harder it is for Hank to regain his full ability to fight off infections/disease.
We were cruising right along in Hank's chemo plan and he was doing REALLY well. We hadn't had any delays due to his health, until just a couple weeks ago. Hank's white cell count was too low for him to receive chemo, so we pushed treatment back a week. It was a reality check for me. Hank looked like he felt fine, but his blood work told us another story. IT's funny how we always say, don't judge a book by it's cover. It is such a true statement. Just because we look okay on the outside, doesn't mean the inside is doing well. I am sure the cashier at the grocery store today thought my life was just peachy as I smiled and thanked her for helping me bag my groceries. As I asked her how her day was, and if she had any fun summer adventures planned or in the books. She had no clue I was worried about mold spore counts and how badly they could wreck my four year old's body.
I never intend to sound like a "negative Nellie" on here, but I think you all read this blog to truly know the going ons. To know how to pray with and for us. To be able to empathize and sympathize with Hank and with our family. I don't think you can do that if I smile and tell you "I'm doing okay, thanks" as I did to the cashier today.
Hank seems to be doing well. He has become more familiar and less afraid of the chemo routine in some ways. He is eating like a CHAMP lately... seriously, the kids can out eat me. I am super grateful for his appetite. He is pretty good about hand washing/sanitizing and is vigilant about checking to see if his drinks have tap water in them. Haha. He is smiling, and laughing, and playing. He is also whiny, and hot-headed, and tired by 6. Hank gets excited about having guests, but is perfectly content just being home with the family too. He is a sweet snuggler, obsessed with Ruby, annoyed by Lena, and hot and cold with Corin. (Although the boys have played fairly well with one another the past few days.)
This is our life. Unpredictably beautiful and messy. Sweet and scary. Calm and chaotic. All things, at different times... I think that is life for everyone. Maybe not on such high highs or low lows of the spectrum... but life no less.
Taylor and I, well... I can only speak for myself. I can say that I know Taylor enjoys being the one who takes Hank to treatments, to be a part of that time with Hank and to be able to calm and sooth Hank in those times.
And me, well... I can't pretend that I am okay. I am struggling. I am struggling to see joy some days. I am struggling to trust in God some days. I am overwhelmed by God's faithfulness some days, but other days I have so many questions... several of which begin with "why?!" It is hard to explain where I am in my relationship with God right now. I still trust that Christ died for me. That my sins are washed clean by the body and blood of Christ. I can't explain how I know with all certainty that Jesus loves me and died for me. It is an aching of my heart for Jesus.
But in the same swing of the pendulum, I trust in God and then I don't.
I am not one to say/believe that "I think everything happens for a reason." Or that "God never gives us more than we can handle." I think God can use everything that happens to His glory. I also think that it breaks his heart to have to use a lot of life's/sin's consequences for his glory. I don't think that God creates horrific seasons in our lives to sanctify us or teach us a lesson. I don't think God places cancer, or SIDS, or any other horrific circumstance in people's lives "for them to become stronger."
And yet... I can't help but be a little angry with God for not holding back some of those circumstances... because I know he could. I am not stronger. I am not stronger because of these trials. I am not stronger after losing a son to SIDS and now watching Hank struggle through cancer. I am not stronger, but I am more sympathetic, more empathetic, more enlightened to things I was once ignorant about. I might be "wiser", but I am not stronger. Please don't mistake one for the other.
I cry. A lot. I question. A lot. I struggle. A lot. I am weak. A LOT.
There are a lot of great things happening in my life too.
Taylor and I celebrated our 10 year anniversary. The kids constantly bring smiles and laughter to my heart (and face). :) Friends and family are constant comforts and joy. Our life is not consumed with pain and sadness and dwelling on Hank's cancer... there is some normalcy, there is still happiness.

Just know though, that if you ask how we are doing... you might not get the pretty book cover you were anticipating... you might just get the full story.
     I will leave you with a "rainbow over a boat."

Friday, June 17, 2016

The past couple of weeks...

We knew the symptoms of radiation would catch up with Hank eventually. We hoped and prayed they wouldn't, but they came all the same. Hank's little face became more reddened with each passing day. Some from inflammation, some from the friction caused by the radiation. Sores in his mouth began to  form first. Little blisters on the interior of his lips and cheeks. His lips dried and began cracking and bleeding. then the nose bleeds began and the large blister at the end of Hank's tongue. Between the blisters and swelling, his speech sounded slurred and at times we simply could not/can't understand what he says. Last week, sores emerged out of the redness of his face. A sore near the top of his nose ridge and then around his nostril. It was heart wrenching to see his face slowly evolve into that state of distress.
His little mouth was very sensitive to foods. Either because his taste buds changed, or because the food hurt his mouth/blisters. Last week, and a couple weeks prior, all Hank ate were mostly cherries with milk, goldfish, and apple slices. This week, he has fixated on packaged peanut butter crackers, lots of milk, and pancakes. We have been successful in getting him to eat a couple other random things.
While these were difficult, the hardest part was probably that Hank was an emotional wreck. After being sedated each day for radiation, he comes home a combination of sleepy, hungry, and just plain whiney. He whines about everything and in asking for everything. I realize the kid is going through hell and I understand why he is whining... but Oh how it grates on the patience and nerves. It has made me a rather up-tight mom lately.
Poor Taylor is exhausted. Having to get up early every day to get Hank to Irving for treatment. As we've progressed into the treatment, the start time has slowly creeped to earlier times. Today Taylor left extremely early and upon arrival, found out that the machine is not working and drove all the way home to await a phone call for him to come back in. I feel so badly for him having to go back and forth. To wake so early and drag a tired, cranky kid to something he doesn't want to do. Taylor then has to turn around and bring a hungry Hank, who is not allowed to eat until after treatment home... it is just rough.
These are the rough points in our life right now... and they are the more visible things. But there are joys too. Like Lena talking up a storm, constantly adding new vocabulary to her sentences. She is also finding new items to push up to the counters to get access to all those forbidden treasures she never had access to before. She loves sitting on the counter and having me fix her hair, or brush her teeth. She loves baths, popsicles, dancing, being tickled, brownies, her baby doll, and telling Hank what he can and can't do.
Ruby is scooting on her tummy, rolling over, and smiling some of the most adorable smiles. She jabbers aways, sucks on her toes, and fits into some of her sister's clothes. Ruby has been such a joy to us and especially to Hank. He absolutely adores her... and when anyone holds Ruby, he assures them they WON'T be taking Ruby home with them. :)
Corin has spent the past week and a half with my parents... both at a family reunion in Iowa on a farm, and in the pool at their home. He is loving it and probably never wants to come home... but we miss him. We miss his goofy knock knock jokes, his sweet moments with Lena, and those times that he and Hank get along and play Legos so well together. There is a lot I miss about him actually.
Hank is becoming really good at Wii Star Wars. One of the aspects of radiation is that his port has to be accessed all week long for the anesthesiologist, so Hank can't run around all week. So in order to keep him "inactive," we let him watch lots of shows, play a bit of wii, read lots of books, and encourage lots of lego building. It has been hard not letting him go outside. He wants to have water balloon fights and play in the sprinkler. He wants to go swimming and run around like all the other kiddos... but unfortunately, it has pretty much rained every weekend, which is when he would finally be able to do those things. BUT... His last day of radiation is next week. Hopefully the machine won't have anymore problems. Hopefully he will get his treatment today, and hopefully Tuesday will be his final day of radiation. Next week for Chemo, we have the Irinotecan injections, which are the 5 day treatments that last about 2 hours. So while radiation comes to a close, Hank will still have to remain accessed the entire week, again. We are ready for some summer water fun after that! Thank you for all your prayers. While this time has been really rough, it could have been rougher. We were also blessed by you all financially, and Taylor didn't have to worry about trying to work throughout this season of treatment. HUGE BLESSING! Thank you all! We could not have walked this journey alone.
Here is Hank last week...

Wednesday, June 1, 2016

The halfway mark

By the end of this week, we will left with two weeks of radiation... over halfway done. Hank has been doing well, especially since he has had the past two weeks off from Chemotherapy. The doctors plan to have a two week break after every 13 weeks of treatment, in order to evaluate if they keep his treatments as is (if they are working well), or if there is need to tweet/increase treatments. So far the doctors are very pleased with the way things are going. Hank is responding really well to Chemo and the doctors have decided to leave his treatment as is.
After radiation, we will have new scans (MRI/CT) to determine how well the cancer responded to the treatments. Hank is growing very weary of going to the doctor every weekday. He pleads to not have to go, but we bribe him out the door with various enticements. He started getting mouth sores this past week and would complain when we ate certain foods. Then this week, his lips began to swell, dry out and crack, which results in bleeding. We started slathering on the vaseline, which seems to help. Hank also started up chemo again this week. His schedule started on Tuesday, due to Memorial day, and will go through Saturday. Each day he leaves for radiation in Irving with dad around 7am, then goes directly to Children's in Dallas for his 90minute Chemo. Yesterday they got home around 4:30... so between the treatments and commute, it is a long day. Both dad and Hank were pretty worn out when they got home. With only Sunday off this week, it may be a pretty long couple of weeks. 
Corin gets out of school tomorrow (Thursday) and plans to go with dad and Hank to treatment on Friday. I am not sure Corin really knows what he is in for, but the fact that there will be Xbox involved at the day hospital seems to lure him in. Plus, if it is just going to be raining all day anyways... he might as well be able to keep his little brother company. :) 

May has been a really hard month. Between sicknesses, Hank, sad news with friends, trying to finish up school stuff, and life in general, we have been stretched thin. Endurance is a word I would request as a prayerful petition on our behalf. Strength and endurance. Faith and endurance. Trust and endurance. Joy and endurance. Endurance. 
I leave you with some pictures... note the black and white scans of Hank's tumor! I colored the tumor in yellow crayon so you could see more clearly.

                                                                    Being Silly.
 Hank wears a mask similar to this at radiation each time, while under sedation. It keeps his head still as they target the tumor with the proton radiation.
 This is what the treatment machine looks like used in Hank's radiation. It is programmed by computer, based on his CT and MRI imaging, to shoot the proton ray a specific depth in order to only treat the tumor.

Wednesday, May 11, 2016

Radiation begins

Today is the day I have dreaded most since we formulated a plan with the team of Oncologists. Today is the day that Hank begins 5 weeks, and three days of radiation. Today is the day that the Radiologists must slowly begin killing the cells in Hanks nasal area... the day that his bones slowly become dead in this region of his body. It is what doctors might call a necessary evil. If we want to kill the cancer, we must also kill Hank's nose and surrounding structure.
It won't turn strange colors and fall off his face, it will simply remain there. The same size, same shape, as the rest of his face and head grows with his body. New soft tissue will grow in this region, but the bone will remain just as it is today. 
It breaks my heart. Not just the radiation, but the Chemo, and the thought of necessary future reconstructive surgeries. All of it. The loss of freedom in where, how, and who Hank can play with. Watching Hank slowly lose interest in many foods he used to enjoy... whether from loss of appetite or  a change in his palette. His fuzzy little head, sparsely flecked with fair hairs. His once bright eyes, now look constantly swollen and tired. His uncharacteristic moods and naps. Our once sturdy, Hank the Tank, is no longer bearing that hearty frame. 
As Hank begins radiation today, I fear his small body shrinking... from loss of appetite, from being sedated each morning, from potential blisters in his mouth, from the combination of radiation and chemo... it is heart wrenching having to take him to a "therapy" that seems wholy untherapeutic from the outside. 
Today, Hank receives two of these "therapies." He goes in for radiation around 10am in Irving, then back to Dallas for 8 hours of chemo at Children's... then back to Irving in the morning for radiation. Please pray for minimal side effect for Hank as he has to be sedated with every radiation treatment. I fear all the chemicals and medicines building up in his system the next couple of days. Please pray for rest for Hank and Taylor as they will likely have to stay over-night for Hank's chemo and then go directly to Irving in the morning upon release. Pray that the radiation center can get Hank's appointment time earlier in the morning than 9:15, since he is unable to eat or drink anything prior to the procedure... which means he begs for cereal (his obsession right now) from the time he wakes up to the time he is sedated. Please pray for Taylor and I, as we are constantly mourning during this long process of trying to heal Hank. But mostly... please just pray for complete healing for Hank. 

Tuesday, May 3, 2016

Oh, it's may?!

The past couple of weeks have been a whirlwind. I will start with saying that Hank did FABULOUS after his last heavy "V.A.C" chemo. It was a long day though... Taylor took Hank to Children's Medical City in Dallas around 8:30am that day. After waiting for a couple hours, they gave Taylor the choice to head to the Plano campus for chemo, or to go home and come back on Thursday. After letting Hank choose, Taylor and the tank headed to Plano. Hank was slightly dehydrated when they checked his levels, so before chemo could start, they pumped some fluids in that little guy. Chemo started later in the afternoon, which meant he would need to stay overnight. Hank only vomited once before they were able to manage his symptoms with meds. Yay!
Fast forward to the next Tuesday, when Taylor takes Hank to the hospital at 6am for an MRI, then  Wednesday morning went in for an outpatient injection. His counts were low, specifically his red blood counts, so the doctors told us to closely monitor Hank for fever... which is the first sign of something lurking in his immune compromised body. Low and behold, that very night Hank spiked a fever just before bedtime. So off I went with the little guy to the ER. We were admitted around 11pm, and in our own room by 2:30am. Hank was given antibiotics and we crashed. After an early wake up time we met with doctors... who wanted to see Hank's counts go up and him fever free for 24 hours before he could head home. So we got right on that. Hank's fever had broken during the night and tried to get him to eat and drink all day... gotta create that blood! After a day in bed, lots of movies, video games, legos and grandma time... plus a Ruby coming to join us... we spent another night in the hospital. The next morning, Hank's 4am labs came back and his counts were UP up and we were away! We took it easy the rest of the weekend and tried to lay low, for fear of having to go back to the hospital.
While we were in the hospital, we missed an appointment with the Proton Radiation center, where Hank was supposed to go in for his simulation day and final imaging prior to the start of radiation therapy. That appointment was rescheduled for today, Monday, and so the week begins. whew.
My head is reeling from all that has been happening. Taylor is in crunch mode for the end of semester with school, crunch mode for building the new ropes course he works for, and all when we are about to begin radiation treatments every day of the week for about 6 weeks (roughly 2 hour treatment window since he has to be sedated every time)... and in the early morning in Irving (about 45 minute drive). These six weeks will also include chemo, two of the weeks being Irintotecan weeks. (everyday, 90 minute treatments.)
Radiation starts next Wednesday.