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
Wednesday, February 24, 2016
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. :)
Wednesday, February 10, 2016
Hank Gets a Port
Our day began around 4am, as nurses came in to draw blood for labs. Hank is terrified of "pokes" and once he spotted the needle, it was a loud room full of fearful cries and pleas for "no pokes." It was extremely hard to not be upset with the nurse and technician trying to draw the blood. I had specifically asked for a numbing cream if they were to draw for labs again, since the night before had been incredibly traumatic. Instead of a numbing cream, they had brought a "pen" that had high pressured release of topical numbing meds... but it was loud and scared Hank when the force would hit his hand. Then he began screaming that his IV port on his hand was hurting him. I heard "ouwie" more times than my heart cares to remember. It was rough. Taylor, Hank and I were all tired... it was 4am after all... and after multiple tries, in the dark, the nurses finally took out his old IV line and put in a new one, drew blood, then placed a numb guard over Hank's IV port to keep him from bumping it. He still complained of pain, but collapsed out of fatigue after the nurses left. We all slept until about 9.
The nurses came in around 9:30 and told us that we were set for surgery at 12:20. Then we decided to go down to the playroom for some crafts or wii playing. Shortly after, we were told the OR had an opening, so someone would come get Hank shortly. We were taken down to sonography first for an ultrasound of Hank's lymph nodes. This ruled out the need for biopsy on those. Praise be to God. Then Hank took a CT of his chest, to rule out a couple questionable spots that showed up on his CT yesterday. And indeed they were clear. Again, Praise the Lord, oh my soul! Finally Hank was rolled into the Operation Room where the surgeons performed a bone marrow biopsy, then placed a port in Hank's chest.
Soon Hank was in recovery and woke up really well from the meds. Again, our hearts were rejoicing in the Lord! So many praises to lift to the Lord our God. Once Hank was back in his room, our oncologist, Dr. Laetsch, came up to talk to us. He shared the results of the clear CT scan on the chest, the fact that we would not be going into the lymph nodes for a biopsy, and then he let us know that some of the pathology results had come back. Hank has been diagnosed with Rhabdomyosarcoma. This was what we assumed was coming as the diagnosis, but now we have to wait for the rest of the pathology to confirm which type of RMS Hank is going to battle. Embryonal (ERMS), the first type, less likely (still a possibility) to require radiation than Alveolar (ARMS). You can learn more about those here.
We are asking that you pray with us, that the Lord might be merciful to Hank in bringing about the confirmation of ERMS, Embryonal Rhabdomyosarcoma, that we would have a successful and swift treatment plan, and that Hank's body would recover easily from any and all treatments.
Lord, in your mercy, hear our cries for our dear little Hank. We bring him before you, to bless and watch over. Lord, please grant us a diagnosis of ERMS, that Hank's cancer might be more swiftly treated, cured, and recovered from. We pray you protect his body from long-term side effects, from any further growth of cancer, and Lord, please allow Hank to regain his strength quickly after treatments. We thank You and praise You for Your mercies today in having protected the rest of Hank's body from the growth and spread of this cancer. We pray you begin now, even before treatment, to shrink this cancer. Lord allow the team of specialists to make careful and guided decisions for Hank's treatment plan. Bless the nurses, doctors, surgeons, and staff that have ministered to us, and will continue to minister to our needs. We pray You remove the burden of anxiety from Hank's family, especially Taylor and I. We pray you protect Corin from the lies of Satan and grief over his brother's pain, that he might trust in You more for peace and comfort during this time. We praise you greatly for the friends and family you have placed in our lives and the support they have constantly poured out upon us throughout this journey. We lay our precious Hank before you, trusting in Your goodness and mercy... and ask that you would stir up a desire to know you fully in his heart. We pray that Hank would come to trust in You, Jesus Christ, for his salvation. We ask all this in the name of the Jesus Christ our Lord, now and forever. Amen.
LL
"Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ. If we are distressed, it is for your comfort and salvation; if we are comforted, it is for your comfort, which produces in you patient endurance of the same sufferings we suffer. And our hope for you is firm, because we know that just as you share in our sufferings, so also you share in our comfort." ~2 Cor 1: 3-7
Ending the day all snuggled up with your new TMNT blanket, toys, and of course... "nice little baby" makes for a pretty great ending.
The nurses came in around 9:30 and told us that we were set for surgery at 12:20. Then we decided to go down to the playroom for some crafts or wii playing. Shortly after, we were told the OR had an opening, so someone would come get Hank shortly. We were taken down to sonography first for an ultrasound of Hank's lymph nodes. This ruled out the need for biopsy on those. Praise be to God. Then Hank took a CT of his chest, to rule out a couple questionable spots that showed up on his CT yesterday. And indeed they were clear. Again, Praise the Lord, oh my soul! Finally Hank was rolled into the Operation Room where the surgeons performed a bone marrow biopsy, then placed a port in Hank's chest.
Soon Hank was in recovery and woke up really well from the meds. Again, our hearts were rejoicing in the Lord! So many praises to lift to the Lord our God. Once Hank was back in his room, our oncologist, Dr. Laetsch, came up to talk to us. He shared the results of the clear CT scan on the chest, the fact that we would not be going into the lymph nodes for a biopsy, and then he let us know that some of the pathology results had come back. Hank has been diagnosed with Rhabdomyosarcoma. This was what we assumed was coming as the diagnosis, but now we have to wait for the rest of the pathology to confirm which type of RMS Hank is going to battle. Embryonal (ERMS), the first type, less likely (still a possibility) to require radiation than Alveolar (ARMS). You can learn more about those here.
We are asking that you pray with us, that the Lord might be merciful to Hank in bringing about the confirmation of ERMS, Embryonal Rhabdomyosarcoma, that we would have a successful and swift treatment plan, and that Hank's body would recover easily from any and all treatments.
Lord, in your mercy, hear our cries for our dear little Hank. We bring him before you, to bless and watch over. Lord, please grant us a diagnosis of ERMS, that Hank's cancer might be more swiftly treated, cured, and recovered from. We pray you protect his body from long-term side effects, from any further growth of cancer, and Lord, please allow Hank to regain his strength quickly after treatments. We thank You and praise You for Your mercies today in having protected the rest of Hank's body from the growth and spread of this cancer. We pray you begin now, even before treatment, to shrink this cancer. Lord allow the team of specialists to make careful and guided decisions for Hank's treatment plan. Bless the nurses, doctors, surgeons, and staff that have ministered to us, and will continue to minister to our needs. We pray You remove the burden of anxiety from Hank's family, especially Taylor and I. We pray you protect Corin from the lies of Satan and grief over his brother's pain, that he might trust in You more for peace and comfort during this time. We praise you greatly for the friends and family you have placed in our lives and the support they have constantly poured out upon us throughout this journey. We lay our precious Hank before you, trusting in Your goodness and mercy... and ask that you would stir up a desire to know you fully in his heart. We pray that Hank would come to trust in You, Jesus Christ, for his salvation. We ask all this in the name of the Jesus Christ our Lord, now and forever. Amen.
LL
"Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ. If we are distressed, it is for your comfort and salvation; if we are comforted, it is for your comfort, which produces in you patient endurance of the same sufferings we suffer. And our hope for you is firm, because we know that just as you share in our sufferings, so also you share in our comfort." ~2 Cor 1: 3-7
Ending the day all snuggled up with your new TMNT blanket, toys, and of course... "nice little baby" makes for a pretty great ending.
PET scan followed by a CT
After a late bedtime last night (12pm), Hank awoke around 6:45 wide eyed and ready for the day. We knew the doctors were pushing for clumping all his scans into one long session, but the MRI machine was in full swing, so we were only able to get Hank on the list for a PET and CT scan. The PET scan was the doctors' main concern in imaging what was going on in Hank's body, so we were thankful there was an available slot earlier in the day. Hank had been cut off from fluids and food at midnight and kids just don't really understand fasting. The PET scan would determine whether there were cancel cells present in the rest of his body, so we anxiously awaited the results once Hank returned to his room.
Hank did so much better coming off the anesthesia today. As he groggily lay in his recovery bed, Taylor and I asked if he was ready to eat lunch. No response. "Hank are you ready to play the Kindle?" No response. "Hank, do you want to go see bubba?" Hank sleepily nodded his head yes and moaned an answer. Later when we recollected this story in front of Corin, he smiled so proudly that his little brother loved him more than the Kindle. :) Then Corin climbed in to the hospital bed next to Hank and let him pick a show to watch as they snuggled and played their kindles.
Around 2:30, we went down to a "playroom" where there were crafts and games, toys and new friends. Corin and his Grandpapa played air hockey, while Hank decorated a wooden bear. After a while, Hank and Taylor wandered back toward the room to eat "lunch", since Hank had only a 1/4 can of sprite in his tummy for the day. Shortly after I joined them and then the doctors came in the room. Our oncologist, Dr. L, told us the PET scan showed that the cancer was mostly confined to the nose area, (PRAISE the Lord!) with the exception of a faint reading showing in the lymph nodes. (Bt no other areas were showing any signs of cancer cells! yay) He told us that the panel of tumor specialists would be reviewing all Hank's tests/labs/images this evening and would create a plan of treatment based on a couple different outcomes that they think the pathology report will produce. They planned to go ahead and proceed with preparations and more tests as they awaited the pathology results.
Tomorrow Hank will have bone marrow samples drawn, a port implanted in his chest, and potentially a biopsy on his upper lymph nodes. The panel of tumor specialists were uncertain on this, and upon the physical examination of Hank, they couldn't find any irregularities in the nodes... so this is something I think they will decide when they get him in the room tomorrow. If they do take a biopsy, it will be an incision biopsy, just as with the lip. The doctors hope to get these procedures done in the morning, clumping them together while Hank is sedated once again.
Hank will potentially start Chemotherapy later this week... Thursday? We are really just taking things one day at a time around here. Granted each day brings something new, but we feel blessed to be in such good care. All the nurses have been extremely loving and sensitive to our needs. The doctors are eager to answer any questions they can, and the staff is helpful in our learning to navigate the hospital. We are indescribably thankful to all our prayer warriors.
As I reflected on the past week, an image of a two lane road appeared in my mind. The sun beating down on the blacktop road, a gravel shoulder, and green fields beyond the gravel. We are driving toward what appears to be the end of the roadway... but it is merely a mirage created by the sun blaring down upon the road's surface. We continue driving forward, the mirage always staying before us at a distance. Constantly thinking we will surely run out of road, but the road continues to stretch on before us... always bursting forth from the sun-soaked mirage.
It was such a sweet image of God's Son... always going before us, never giving us the burden of seeing our road's length, but placing nearsighted portions of this journey at our feet. Never more than we can handle, but portions that are constantly bathed in the Light of His perfect Son. There is a shoulder for us to stop if needed and take a rest as we gaze at the beautiful creation all around. The greenery, the Life, that we are blessed with. I know that we are on a long stretch of road, but that Mirage, that Hope of an end, helps to make it easier to keep driving. Knowing we can pullover and take in the view helps too... for looking at our view today, I know we are blessed and well cared for. Thank you Lord. In the midst of this broken and painful world, your Hope/Mirage will sustain us.
LL
Monday, February 8, 2016
Biopsy to a private room
We arrived at Childrens today for Hank's scheduled biopsy. After waiting what seemed an eternity, Tay and I were called into a consultation room, where Dr Berg confirmed that the frozen sample showed cancerous cells. It was hard to hear that be confirmed. Then he told us Hank would be admitted under the care of an oncology team so they could get more tests underway while we waited for the pathology reports from the biopsy. Hank had a slightly rough time coming off the anethstesia and pain meds and it was so hard to not look at him,as a healthy strong kid coming down off these meds, and envision all the rounds of treatment we will have to watch him go through. I fought back tears as I saw a sweet young child rolled down the hallway past us in a wheelchair with a shiny perfect head. That could be Hank soon.
When we got to our room, we had several doctors and nurses come in to speak with us. After an hour or so, we were told Hank would get three more scans tomorrow, all needing sedation. An MRI, CT, and PET scans to check whether the cancer is localized or if it has spread. This will give us a better idea of how to treat the cancer in addition to what type we find out we are dealing with from the biopsy results. He will also have to have labs drawn (he hates needles).
We are on the stem cell transplant ward floor because they didn't have any free rooms on the oncology floor, so visitors aware limited to healthy people only. No flowers are allowed (just in case anyone was thinking of sending flowers). We can feel everyone's prayers. It is still surreal that we have to help Hank battle against cancer, but as the reality sinks in, I am more aware of how gracious the Lord has been to our family in the support He is providing through you all.
While it was crushing hearing the news, it was even more heartbreaking watching Corin absorb Hank's post-op appearance. Tubes coming out of his hand, monitors strapped to him and the machines, blood stains on his sheets from wiping his mouth, and hearing the adults talk about scary cancer stuff. As he went to hug Hank goodnight, he broke. Tears flooded down his face and he held Hank in a hugging embrace. When he let go, he quickly buried his face in my shoulder and then in his aunt Natalie's. He is heartbroken for his brother.
Please, continue to petition the Lord our God. This is a long journey that rapidly began for us and we are still trying to catch pace with all that has happened since last Thursday. Our lives are on hold, yet barreling forward all at the same time. We will need a lot of things, but most of all prayer warriors. Resting in the Lord.
LL
Friday, February 5, 2016
Biospy Scheduled
Well today we met with our Otolaryngologist. Basically a pediatrician that specializes in face and throat tissues/issues. He was a little less vague with us, but just as compassionate as our ENT. Dr. Berg, our new doc, examined Hank and let us know that the team of experts that have looked at his MRI feel they need to act as quickly as possible. So we have a biopsy scheduled for Monday at 2pm... which could lead to surgery that night. With part of the tissue they remove on Monday, they will be performing what is called a "frozen tissue?". Basically from this procedure, they will be able to have a preliminary result as to whether it is malignant or not. (which they believe it to be from MRI) Since Hank will be fully sedated for the biopsy, they will take the results of the frozen tissue and decided whether it is of benefit to go ahead and remove as much of the growth/tumor as possible. He warned us that they may not remove all the tissue, especially if it impedes something structurally that Hank needs for daily function. We were warned that he might suffer some numbness or loss of feeling due to nerve damage in his lip and cheek. This could be temporary or permanent. The scariest part of the appointment was when Dr. Berg gave a name to what they think they are dealing with. The MRI has given them reason to think this tumor is "Rhabdomyosarcoma." Basically soft tissue cancer. If this is what we are dealing with, he will require both surgery and "medical" treatments... radiation or chemotherapy. The doctor said this will likely be a long journey. And can be very serious/life threatening, so he is pursuing treatment as quickly as he is able. We are sort of in shock... land sort of just waiting to hear what the final diagnosis is. Until Monday/ full results are in, we can only speculate and pray against this. So let's pray together against it. Thanks all.
LL
LL
Thursday, February 4, 2016
Heavy Hearts
It is with a heavy heart that we bring you an update on Hank. We are still processing through our visit today with our ENT specialist at Childrens. She started off by explaining that what they originally thought was scar tissue or possibly calcification in the nasal area due to repeated trauma (kicks), was not what we were dealing with in Hank's case. She said that it was pure coincidence (Providence) that the inflammation from the boys' ninja session brought the issue to our attention. They don't think the inflammation played any role in the growth of this mass. While she wasn't willing to speculate on what exactly the growth is, she does know (from the MRI) that it is not benign. She had already called another specialist yesterday, after calling us to set up our appointment with her, to make an appointment for him to see Hank ASAP... as in tomorrow. Taylor asked Dr. W how concerned she was, and she responded very seriously with "I am, we are, very concerned and want to progress treatment as quickly as we are able to." It was in that moment that Taylor and I knew this was going to be a heartbreaking journey. Dr W is uncertain what we are dealing with, but both she and the radiologist believe it could likely require more than just surgery... as she mentioned radiation and chemotherapy as possible treatment options. The praise of the day is that the mass/tissue has not breached any of his facial cavities, as far as they can tell, and that it has only spread in the exterior tissue. So while it has deformed his nose, cheek and lip, it has not applied pressure on any interior glands, etc. So praise God for that.
On the drive home, I couldn't help but think of what I thought was a prolonged timeline in the expediency of Hank's care up to now. Oh what a mercy that we did not have this news prior to my stomach bug, Christmas, and Ruby's arrival. We would have all been incredibly stressed and burdened with all those colliding. So I can only thank the Lord that His timing is not my timing. It is hard resting in the Lord with this news... I know the many trials and heartaches that the Lord has brought us through up to now, but it is so hard to find peace in this moment just now. Please pray for Taylor and I as we begin a journey of doctors' visits and big decisions. Please pray for Hank, that the growth would slow or stop growing. Please pray for our family as we all wrap our heads around this, especially Corin... he is very sensitive and tenderhearted towards suffering and has already shed many tears over Hank's nose.
We have an appointment with another doctor specializing in the face and throat tomorrow (3/5) at 1pm. Dr B will examine Hank and discuss a biopsy time with us. Once we have the biopsy, it will take about 5-7 days to process the tissue sample to let us know exactly what we are going to treat, and how to proceed with treatment (forms of treatment/surgery.) So we won't really have anymore information or answers to our questions until the biopsy comes back, which could take a couple weeks... so I likely won't have any updates until then. So until the next update, thank you for your prayers... they are priceless.
LL
On the drive home, I couldn't help but think of what I thought was a prolonged timeline in the expediency of Hank's care up to now. Oh what a mercy that we did not have this news prior to my stomach bug, Christmas, and Ruby's arrival. We would have all been incredibly stressed and burdened with all those colliding. So I can only thank the Lord that His timing is not my timing. It is hard resting in the Lord with this news... I know the many trials and heartaches that the Lord has brought us through up to now, but it is so hard to find peace in this moment just now. Please pray for Taylor and I as we begin a journey of doctors' visits and big decisions. Please pray for Hank, that the growth would slow or stop growing. Please pray for our family as we all wrap our heads around this, especially Corin... he is very sensitive and tenderhearted towards suffering and has already shed many tears over Hank's nose.
We have an appointment with another doctor specializing in the face and throat tomorrow (3/5) at 1pm. Dr B will examine Hank and discuss a biopsy time with us. Once we have the biopsy, it will take about 5-7 days to process the tissue sample to let us know exactly what we are going to treat, and how to proceed with treatment (forms of treatment/surgery.) So we won't really have anymore information or answers to our questions until the biopsy comes back, which could take a couple weeks... so I likely won't have any updates until then. So until the next update, thank you for your prayers... they are priceless.
LL
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