(originally posted by Wendi)
Disclaimer: I am not as poetic or pithy as my husband. My posts will contain a lot more rambling and details. This is partly due to our stylistic differences. But it is also because, as I was prepping for this journey, there was not a lot of info out there on what it would actually look like day to day. Genny found some, but they mostly ended sadly. I found one, but the boy's treatment was not nearly as intense as Mark's. I still found comfort, however, in at least having some sense of what might happen. So I am doing my best to present what this looks like, day to day, for any other parents out there who might just need a little glimpse, for sanity's sake, like I did.
Greetings from Houston! It is currently colder here than it is at home. Crazy :).
Tonight we are in one of the family tv rooms watching the Lego Movie (which we brought with us) with a group of kids that Bella and Mark have been hanging out with. It's really nice to have a night where the kids can just hang out and be kids.
The move to Ronald McDonald House (RMH) on Sunday was good. The only persistent difficulty has been not having a vehicle. Getting to and from the hospital has been fine, but it does feel isolating to not be able to go anywhere else. We could probably figure out the bus system, but Jim starts Challenge II at a new campus tomorrow and transportation for that is proving difficult. We're good for tomorrow though, and he's excited to meet a new class and have a break from hospital appointments and RMH. We were introduced to a family here who also does CC in Iowa and who also have an 11 year old boy (Jonathan) undergoing proton therapy for a brain tumor. Mom, dad, and big sister are all here. Meeting them took away some of the initial loneliness and they've been great at asking the Drs and staff to be good to us since they have been here for four weeks already and we have all the same doctors.
So, onto the real reason you are all reading: updates on Mark.
Yesterday we had four appointments, two at each center, alternating so that it required a shuttle trip between each one. Did I mention it's cold here?
Our day started out less than promising when we reached MD Anderson and they decided Bella couldn't accompany us to any of the appointments because we don't vaccinate. I got upset, explaining that that would have been nice to know before we left Washington. The woman at registration wouldn't budge, informing me that Bella was welcome to stay downstairs with Jim on the chairs in the crowded lobby. So we left them there and headed upstairs to the pediatric oncology clinic. I mentioned to the nurse checking us in what had happened with Gabriella, how far we'd traveled and how frustrated I was, especially since the vaccination question wasn't listed on the oncology checklist at their front desk. She made some phone calls, called me over, and told me to go get Bella and tell the front desk to call the oncology head nurse if they had any issues. So, crisis averted. The woman downstairs did ask me who gave authorization and did call. She was there again today and didn't question us, but she sure didn't seem happy about it.
We went back up and started the day dealing with paperwork. It was painless and cheerful (thank goodness for our insurance and Frank's diligence in making sure all the details were straight ahead of time - I've heard that this has been a far from painless process for some of the others here). Then off to proton therapy (shuttle trip) to meet our radiation oncologist. They were running behind, but that was fine since there were several people there to meet. Our doctor there is very nice. I like her a lot. She explained the course of treatment and we discussed how Mark's been feeling. I mentioned that his appetite has been low, and they wanted to determine if it was from nausea or something else. The conversation completely overwhelmed Mark, and he broke down in tears. We managed to distract him, but it was a good reminder for us all that he may be brave on the outside, but he's still sensitive and not liking the loss of control on the inside. It seems as if he is worried that he is doing something wrong whenever a "symptom" is pointed out. He wants so badly to be normal again and just not talk about it.
We sent Mark out so that we could finish running through the side effects. They said with proton therapy there is actually starting to be some evidence that as long as the child is intellectually stimulated enough, there might be only a small amount of cognitive delay, and since Mark is so precocious (their words), it may not be noticeable! Yay, good news!
At this point, however, I started thinking I was hearing Bella crying, but the nurse said not to worry, she didn't think it was her. Finally, after about ten minutes, I opened the door to listen. Yep. Sounded like Bella. I found her in the lobby, crying and screaming that she wanted her mommy, Jim sunk low in the seat beside her with both earphones in, everyone else pretending nothing strange was happening. Sigh. I took her back with me, and she calmed down quickly, but what a scene.
After that was a trip back to MDA main where we grabbed a quick lunch in the crowded and overwhelming cafeteria (we have been there twice now, and we still are unclear as to what is offered at several of the stations). Bella and Jim hung out in the cafeteria while Mark and I ran upstairs to get his chest xrays. They were very efficient and we were in and out of there very quickly. This left us a bit of down time, so we hung out in the cafeteria, then headed out to catch an early shuttle back to proton therapy (we had been a bit late the first time over). On the way off the shuttle, a nice elderly man stopped the children and gave them each a backpack with crayons, a few toys and a colouring book. This was a sweet pick me up, as we were all wearing a bit thin by this time.
We got there fifteen minutes early and checked in. They let us know that there had been some complications in the schedule, so they were running about an hour behind. We were trying to find a place where we could all sit together and settle in, when they came over and asked us if we had been made aware of the playroom yet. Nope. Sure would have been helpful earlier :). They have a lovely, large playroom with comfy chairs and a door that closes. Ended up being very useful, since we didn't finish up there until 2+ hours later. This appointment was for Mark's radiation simulation, which is when they make his mask and do the scans that they will use to do his treatment. The Child Life specialist came in and explained the process to Mark. First, they would take a plastic mesh screen with small holes in it and soak it in water. This makes it pliable. They then place the mesh on his face and stretch down over the sides until it reaches the board he is lying on. Then it is bolted to the board and the technician molds the mesh to his face and holds it in place while it dries. She showed him an example of before and after, so he knew what to expect. It did not adequately prepare me.
When we finally got back to the room, we discussed my concern about the hard surface Mark would have to lie on for 30-45 minutes each day, considering that the back of his head is still hurting from the surgery and bothers him when he lies flat. We tried some different options, but nothing seemed to be working. The tech called our doctor in and we conferred for a bit, retrying the different options. The only alternative was to sedate him, but that would add a lot of extra time to each days treatment, plus it would make it harder on him. Tylenol was suggested to help with the pain (luckily I had some in my bag, since the doc said it would take an act of congress for her to get some for him). She felt that he was mostly just nervous, so we worked together and finally got him in a position everyone agreed on so we could proceed, sans sedation.
Time for the mask.
I posted on Facebook that I had nightmares last night. I can almost guarantee you that they were caused by the making of his mask. It is a hard process to describe adequately. The emotional response it elicited in me was visceral and unexpected. Seeing your child being covered with heavy plastic netting and bolted down was a bit unreal and agonizing - it looked like he was being smothered while being set up for some sort of torture. I spoke to another mom about it, and she said she had taken pictures, but afterwards had realized that she wouldn't be able to look at them for quite awhile. He also had a sort of form fitting foam pillow that was molded to his legs. These are both so that he does not move during radiation, because the beams are targeted very precisely. After the mask and leg pillow were made, they did the necessary scans. Everything looked good and they decided he did not need a new MRI and treatment should be able to start next week.
Not much happened after that. A long wait for the shuttle to take us back to RMH. Dinner was mostly gone when we got back, but that was fine (dinner is provided every evening by a different community group. It is really lovely). Hung out, spoke with Jonathan's mom and dad, did our chores, and collapsed into bed.
Today was much easier. We headed in early again, got labs drawn, got to hang out with our friends in the waiting room for a bit, found that the oncology clinic also had a playroom, and today it was staffed :). We really like our oncologist here. He reminds me a lot of our oncologist at home, which is comforting. Again we had to go through the medical history and current symptoms. I was more careful this time, but when I mentioned that he might have been nervous during the proton simulation, he got upset and said it had just hurt. Again, reminding us that he is only 11. Mark left since we had to go through all the side effects again ( he hates that part). However, I found out that there is actually a chance at this stage that he won't lose his hair or have serious vomiting issues. He said it's an unknown, but he's seen lots of kids fly through this first stage with very few problems. He said all of that will definitely happen with the chemo he'll get back home, but the stuff here is relatively low dosage. At this point it was decided that chemo and proton therapy both start next Monday. There are also a few other appointments they want to set up for him (neuro cognitive testing, a trip to endocrinology about his appetite, a meeting with the social worker and family life, plus a psych visit), but I have no idea when those will be.
After that, we headed upstairs so they could do an initial access on Mark's port (the permanent iv line in his chest). Mark was really nervous. However, since chemo doesn't start till next week, they said not to worry about it and they would just do it then. Yay. All done and it was only 11:30. The shuttle wouldn't come for an hour, so we grabbed lunch in the cafeteria again and then headed back. We were all exhausted, and Bella had been a handful pretty much since we got here, so we headed to our room for quiet time. She and I both took long naps and Jim and Mark had some time to get things done. Naps over, Bella and I headed downstairs. After a few fun rounds of bingo, we all had a lovely dinner of country fried steak and mashed potatoes. Then the kids hung out for a bit and we headed up to our movie night. I am so thankful for the nap and restful evening. I feel more steadied and ready to embark on the rest of our trip. Thank you all for your continued prayers, thoughts, and support. We love you all and God is good.
Wednesday, February 25, 2015
Friday, February 20, 2015
The Journey Begins
(originally posted by Wendi)
Today we began our "vacation" to Houston. Originally we thought we had to leave the house by 8:30 this morning, but then we realized that I had misremembered the time. Thankfully, we didn't have to leave the house until 10:15. This was great, because it gave us time to repack everything I had already packed. I had been in a rush and we were out of room with no more luggage available. Frank to the rescue! We reorganized and ended up with everything organized plus extra room. Packing skill +7.
The trip was relatively uneventful. It was the first time Bella had flown (that she remembers). Everything was a fun new adventure - breakfast at Beaches, the security line, moving sidewalks, being yelled at in Vegas for trying to take a picture by the slot machines, her grabbing the hand of a stranger, and finally making friends with our neighbor on the final flight. Her name was Felicia. She shared with me about apricot kernels and their ability to fight cancer; I shared with her about Classical Conversations. She was very patient with Bella, which was good since she melted down when we landed in Houston. Her ears really bothered her, and she made sure everyone knew it. Meanwhile, Mark and Jim got to sit in the last row with a woman who was not fond of flying. Did I mention that it was a very bumpy ride? We then navigated the intricacies of getting a cart, retrieving our luggage, and finding a cab.
Everywhere we looked, there were signs for MD Anderson. Needless to say, by the time we had checked in and headed down for dinner, everyone was a bit...snippy. Once dinner was on the table and the requisite trades had been completed (I don't like this Mac and cheese, I want your hot dog!), everyone seemed to mellow.
And then, the other shoe dropped.
Mark suddenly looked up and asked, "How long will it be until I'm a normal kid again, instead of a kid with brain cancer?"
Silence.
"Well, never really. It will always be part of who you are now," I slowly replied.
His face began to turn red, and I could see the tears welling up in his eyes. I suggested that he and Jim head up to the room to lie down. He agreed. Before he was five feet from the table, though, he had found something to joke about, and he turned back to flash me a smile.
Since then we've been relaxing in the room, working on looms sent with us by friends, playing video games, watching tree house and pool design shows on animal planet. Everyone has relaxed. "Now this is getting fun," Mark remarked.
The only other observation is that it is strange to be in a place where you know that everyone is there for the same reason. To stay at this hotel, you have to be undergoing treatment at MD Anderson. The older couple who passed us. The people laughing on the other side of the wall during dinner The teens looking for the pool. Is it one of them? Or are they here with someone? I find myself looking for clues, and perhaps spoilers too. Because I still don't really know what this will look like for Mark.
No one does. But I find myself endlessly searching for clues anyway.
That's all for tonight. The weekend should be boring. Thank you for your prayers, gifts, encouragements, and love. Thank you to God for His never falling love.
Goodnight, from Houston.
Today we began our "vacation" to Houston. Originally we thought we had to leave the house by 8:30 this morning, but then we realized that I had misremembered the time. Thankfully, we didn't have to leave the house until 10:15. This was great, because it gave us time to repack everything I had already packed. I had been in a rush and we were out of room with no more luggage available. Frank to the rescue! We reorganized and ended up with everything organized plus extra room. Packing skill +7.
The trip was relatively uneventful. It was the first time Bella had flown (that she remembers). Everything was a fun new adventure - breakfast at Beaches, the security line, moving sidewalks, being yelled at in Vegas for trying to take a picture by the slot machines, her grabbing the hand of a stranger, and finally making friends with our neighbor on the final flight. Her name was Felicia. She shared with me about apricot kernels and their ability to fight cancer; I shared with her about Classical Conversations. She was very patient with Bella, which was good since she melted down when we landed in Houston. Her ears really bothered her, and she made sure everyone knew it. Meanwhile, Mark and Jim got to sit in the last row with a woman who was not fond of flying. Did I mention that it was a very bumpy ride? We then navigated the intricacies of getting a cart, retrieving our luggage, and finding a cab.
Everywhere we looked, there were signs for MD Anderson. Needless to say, by the time we had checked in and headed down for dinner, everyone was a bit...snippy. Once dinner was on the table and the requisite trades had been completed (I don't like this Mac and cheese, I want your hot dog!), everyone seemed to mellow.
And then, the other shoe dropped.
Mark suddenly looked up and asked, "How long will it be until I'm a normal kid again, instead of a kid with brain cancer?"
Silence.
"Well, never really. It will always be part of who you are now," I slowly replied.
His face began to turn red, and I could see the tears welling up in his eyes. I suggested that he and Jim head up to the room to lie down. He agreed. Before he was five feet from the table, though, he had found something to joke about, and he turned back to flash me a smile.
Since then we've been relaxing in the room, working on looms sent with us by friends, playing video games, watching tree house and pool design shows on animal planet. Everyone has relaxed. "Now this is getting fun," Mark remarked.
The only other observation is that it is strange to be in a place where you know that everyone is there for the same reason. To stay at this hotel, you have to be undergoing treatment at MD Anderson. The older couple who passed us. The people laughing on the other side of the wall during dinner The teens looking for the pool. Is it one of them? Or are they here with someone? I find myself looking for clues, and perhaps spoilers too. Because I still don't really know what this will look like for Mark.
No one does. But I find myself endlessly searching for clues anyway.
That's all for tonight. The weekend should be boring. Thank you for your prayers, gifts, encouragements, and love. Thank you to God for His never falling love.
Goodnight, from Houston.
The Handoff
One more post from me, just got back from dropping them off. Here are the intrepid travelers, enjoying breakfast at Beaches in the Portland Airport before departure.
Thursday, February 19, 2015
Transition
Wendi leaves tomorrow morning with Mark, his first appointment at MD Anderson is on Monday the 23rd. Also traveling are 16 year old Jim and 6 year old Gabriella. Gabriella will provide the cute energy distraction component ("let's play a game!"), and Jim will provide the backup responsible person component. This will split the family evenly in half for the duration. I could have gotten the time off work at Clark PUD to be there no problem, but feel less able to leave considering my secondary job as resident firefighter for East County Fire. We live in a house owned by the Fire District that serves as a fire station, and I run calls with the rescue squad when I am not away at my full time job. It would not be fair to the Fire District for Station 96 to be idle for weeks/months.
They will be staying at the Rotary House, a hotel attached to MD Anderson, for the first few nights while they acclimate to the campus and surroundings to get their bearings. It had appeared that there would be a delay getting into the Ronald McDonald House (RMH) for maybe a few weeks, but as of today praise the Lord it looks like they might get in right away on Sunday night. This is not a for-sure thing, no guarantees, but it looks likely. Being able to get in there is a huge break and huge blessing! Right now we're just waiting for Wendi's background check to clear. It is reassuring that adults staying at RMH are screened.
In another bit of good news, the RMH advised us that there is an exception to their normal 45 day stay limit for patients undergoing proton therapy, and Mark will be permitted to stay up to 90 days. Amazing news, Yay!!! Mark is undergoing six weeks of treatment, which would come up to 42 days. With a week of pre-admit visits and prep on the front end, and a few days on the back end (probably no one wants to travel the very next day after completing six weeks of chemo), the 45 day limit was becoming a concern. No longer.
Last night, big sister Genny cut Mark's hair really short, so that it won't be as traumatic when it starts falling out. Making it feel real. Being separated for so long will be hard, and Mark is going to be a changed person when they get back, so this departure is becoming pretty emotional for me, and writing here is getting a little harder. But this works OK because I will be here at home and Wendi will be with Mark, and it is for this reason Wendi is taking over the blog, this is probably my last post for a while. I don't know how often she will be able to keep it updated, but I think she has high hopes to be on here frequently if not daily as much as possible.
We give thanks for getting so many breaks and assistance, and give thanks for so many words of support and prayer from so many places, the outpouring is overwhelming to me and I just cannot express in any meaningful way the depth to which this has touched us. Thanks so much to all of you for caring and staying in touch. Thanks for reading.
They will be staying at the Rotary House, a hotel attached to MD Anderson, for the first few nights while they acclimate to the campus and surroundings to get their bearings. It had appeared that there would be a delay getting into the Ronald McDonald House (RMH) for maybe a few weeks, but as of today praise the Lord it looks like they might get in right away on Sunday night. This is not a for-sure thing, no guarantees, but it looks likely. Being able to get in there is a huge break and huge blessing! Right now we're just waiting for Wendi's background check to clear. It is reassuring that adults staying at RMH are screened.
In another bit of good news, the RMH advised us that there is an exception to their normal 45 day stay limit for patients undergoing proton therapy, and Mark will be permitted to stay up to 90 days. Amazing news, Yay!!! Mark is undergoing six weeks of treatment, which would come up to 42 days. With a week of pre-admit visits and prep on the front end, and a few days on the back end (probably no one wants to travel the very next day after completing six weeks of chemo), the 45 day limit was becoming a concern. No longer.
Last night, big sister Genny cut Mark's hair really short, so that it won't be as traumatic when it starts falling out. Making it feel real. Being separated for so long will be hard, and Mark is going to be a changed person when they get back, so this departure is becoming pretty emotional for me, and writing here is getting a little harder. But this works OK because I will be here at home and Wendi will be with Mark, and it is for this reason Wendi is taking over the blog, this is probably my last post for a while. I don't know how often she will be able to keep it updated, but I think she has high hopes to be on here frequently if not daily as much as possible.
We give thanks for getting so many breaks and assistance, and give thanks for so many words of support and prayer from so many places, the outpouring is overwhelming to me and I just cannot express in any meaningful way the depth to which this has touched us. Thanks so much to all of you for caring and staying in touch. Thanks for reading.
Tuesday, February 17, 2015
Accepted
We wanted to wait until we were absolutely sure. And now, we are absolutely sure.
Got the final confirmation this morning, all the processing went through and Mark was accepted for treatment at the MD Anderson Cancer Center in Houston.
We had been afraid of reporting good progress and then having something fall through at the end, but now we are locked in.
Deep breath... and now it is OK to say HOORAY!!! Huge answer to prayers!
Wendi and Mark are also taking Gabriella and Jim, arriving Friday night, which will allow them time to acclimate and orient themselves to the huge medical campus there.
We have received a handful of offers of places to stay, which has been a huge blessing, just now starting to work through what will work best for the travelers.
As an affirmation of our choice to go this route, our Oncology case worker at Randall Children's went so far as to say that if it was his kid dealing with what Mark is dealing with, MDACC would also be his first choice.
So... here we go!
Got the final confirmation this morning, all the processing went through and Mark was accepted for treatment at the MD Anderson Cancer Center in Houston.
We had been afraid of reporting good progress and then having something fall through at the end, but now we are locked in.
Deep breath... and now it is OK to say HOORAY!!! Huge answer to prayers!
Wendi and Mark are also taking Gabriella and Jim, arriving Friday night, which will allow them time to acclimate and orient themselves to the huge medical campus there.
We have received a handful of offers of places to stay, which has been a huge blessing, just now starting to work through what will work best for the travelers.
As an affirmation of our choice to go this route, our Oncology case worker at Randall Children's went so far as to say that if it was his kid dealing with what Mark is dealing with, MDACC would also be his first choice.
So... here we go!
Thursday, February 12, 2015
Developments
Tuesday was our long-awaited appointment with the Oncology department at Randall. Wednesday was the subsequent appointment with the Oncology Radiology people.
This has been a long week.
After additional testing, Mark's tumor has been more firmly classified as an upper level grade 3 tumor, but this was complicated by the fact that it was heavily damaged during removal. 3 is fairly aggressive, but not super aggressive like a 4. The reason for setting it at a 3 is that testing on the material put it in the middle of the scale between 2 and 3, but that many (most? all?) of the markers that were measured with it are associated with grade 4 tumors.
Furthermore, since it is impossible to rule out that it may have had some grade 4 material in it, the treatment protocol has shifted back upwards as a precaution. Mark's treatment will be as if it was a grade 4 tumor.
This is a hard pill to swallow.
The plan is now for six weeks of irradiation and chemo, five days a week. Then six weeks off for some recovery, followed by six months of maintenance chemo.
This is a hard pill to swallow.
We are learning about what treatment looks like. Mark will have another surgery tomorrow to implant an IV port, but this is a day surgery where we take him in the morning, and take him home that evening. This is a subcutaneous IV access device that resides on the chest. You can google it if you want more info, but in essence it allows easy IV access without having to stick him with a needle each and every time. When you are looking at six weeks of five days a week chemo...
We were trying to better understand the port, and another kid maybe 7 years old volunteered to show us his. The huge scar on his head exposed by his chemo baldness told the tale. He was all smiles though, which was encouraging. And as always we are reminded that there is a lot of pain and hardship everywhere around all of us, much of it unseen, so always be thinking of those around you and practice frequent random acts of kindness, you never know how you'll change a day, or a life.
Radiation therapy is horrible. Horrible. We are told Mark will experience some level of developmental degradation both cognitively and physically due to the radiation exposure. How much is hard to say. This is just so hard to process, and I want so hard for some reasonable alternative treatment to be out there that we could have faith in. We've had lots of feedback from friends on various alternatives, but they are so far all either not really applicable to Mark's situation, or have failed to pass my own credibility researching process. If you have sent us ideas and are offended by that statement, I just don't have enough gas in the tank to be sorry, so get over it. We're still your friends and love that you care enough to share, so you'll have to be the bigger person here. Trust me, I am inclined to be open to crazy-sounding ideas sometimes. Radiation and chemo are horrible, and the last thing I want to do, but there just aren't any options that we feel we can sign on to with confidence.
One bright light, there is a newer technology in radiation treatments that limits what is known as "exit radiation", and thus, limits radiation damage. However, there is very limited data on improved outcomes for this treatment, because it is new and without a lot of case history, and there aren't very many of them out there yet to build this kind of data. According to the Radiation Oncology people here, the closest one is in Seattle, and the best group doing this is in Houston, at MD Anderson Cancer Center, part of the University of Texas system. Our local guy said the dosage is the same so using the newer tech would not diminish its effectiveness, but questioned whether the unknown level of benefit was worth the travel. We initially agreed, but upon further review have opted to try to go this route. RCH has sent info on our behalf to MDACC, so we will see how that goes.
If we are accepted at MDACC, Wendi will be traveling with Mark to Houston for a stay of about two months, likely leaving in the next two weeks. As far as we know, the follow up maintenance chemo will be done here. What this means is that we are now trying to quickly figure out lodging (Ronald McDonald House is not an automatic option), transportation from lodging to the hospital for six weeks, and how much our insurance will cover. So far we know that this is out-of-network coverage, so there will be a substantial out of pocket expense, how much I do not yet know.
There are a lot of moving parts, and between all of this and the continuing day-to-day responsibilities, to use a metaphor from Wendi's Dad, it is getting a little harder to keep our BBs in a nice neat little pile when the ground keeps shaking. And yet, there is much more to come, so we will have to find a way.
This has been a long week.
These are all hard pills to swallow.
Thanks for your continued prayers and words of support. I'll try to keep this updated when I can.
This has been a long week.
After additional testing, Mark's tumor has been more firmly classified as an upper level grade 3 tumor, but this was complicated by the fact that it was heavily damaged during removal. 3 is fairly aggressive, but not super aggressive like a 4. The reason for setting it at a 3 is that testing on the material put it in the middle of the scale between 2 and 3, but that many (most? all?) of the markers that were measured with it are associated with grade 4 tumors.
Furthermore, since it is impossible to rule out that it may have had some grade 4 material in it, the treatment protocol has shifted back upwards as a precaution. Mark's treatment will be as if it was a grade 4 tumor.
This is a hard pill to swallow.
The plan is now for six weeks of irradiation and chemo, five days a week. Then six weeks off for some recovery, followed by six months of maintenance chemo.
This is a hard pill to swallow.
We are learning about what treatment looks like. Mark will have another surgery tomorrow to implant an IV port, but this is a day surgery where we take him in the morning, and take him home that evening. This is a subcutaneous IV access device that resides on the chest. You can google it if you want more info, but in essence it allows easy IV access without having to stick him with a needle each and every time. When you are looking at six weeks of five days a week chemo...
We were trying to better understand the port, and another kid maybe 7 years old volunteered to show us his. The huge scar on his head exposed by his chemo baldness told the tale. He was all smiles though, which was encouraging. And as always we are reminded that there is a lot of pain and hardship everywhere around all of us, much of it unseen, so always be thinking of those around you and practice frequent random acts of kindness, you never know how you'll change a day, or a life.
Radiation therapy is horrible. Horrible. We are told Mark will experience some level of developmental degradation both cognitively and physically due to the radiation exposure. How much is hard to say. This is just so hard to process, and I want so hard for some reasonable alternative treatment to be out there that we could have faith in. We've had lots of feedback from friends on various alternatives, but they are so far all either not really applicable to Mark's situation, or have failed to pass my own credibility researching process. If you have sent us ideas and are offended by that statement, I just don't have enough gas in the tank to be sorry, so get over it. We're still your friends and love that you care enough to share, so you'll have to be the bigger person here. Trust me, I am inclined to be open to crazy-sounding ideas sometimes. Radiation and chemo are horrible, and the last thing I want to do, but there just aren't any options that we feel we can sign on to with confidence.
One bright light, there is a newer technology in radiation treatments that limits what is known as "exit radiation", and thus, limits radiation damage. However, there is very limited data on improved outcomes for this treatment, because it is new and without a lot of case history, and there aren't very many of them out there yet to build this kind of data. According to the Radiation Oncology people here, the closest one is in Seattle, and the best group doing this is in Houston, at MD Anderson Cancer Center, part of the University of Texas system. Our local guy said the dosage is the same so using the newer tech would not diminish its effectiveness, but questioned whether the unknown level of benefit was worth the travel. We initially agreed, but upon further review have opted to try to go this route. RCH has sent info on our behalf to MDACC, so we will see how that goes.
If we are accepted at MDACC, Wendi will be traveling with Mark to Houston for a stay of about two months, likely leaving in the next two weeks. As far as we know, the follow up maintenance chemo will be done here. What this means is that we are now trying to quickly figure out lodging (Ronald McDonald House is not an automatic option), transportation from lodging to the hospital for six weeks, and how much our insurance will cover. So far we know that this is out-of-network coverage, so there will be a substantial out of pocket expense, how much I do not yet know.
There are a lot of moving parts, and between all of this and the continuing day-to-day responsibilities, to use a metaphor from Wendi's Dad, it is getting a little harder to keep our BBs in a nice neat little pile when the ground keeps shaking. And yet, there is much more to come, so we will have to find a way.
This has been a long week.
These are all hard pills to swallow.
Thanks for your continued prayers and words of support. I'll try to keep this updated when I can.
Saturday, February 7, 2015
Borrowing Worry
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| 2014 Little League Season, the "Black Lightning" |
Mark just asked if after our appointment on Tuesday we would be all done with this whole thing. I explained that there is still some tumor left and the doctors can't just leave it in there. We briefly discussed chemo and radiation, easing some fears but also addressing some of the difficulties. Then I reminded him that we won't know anything until Tuesday, so we shouldn't-- He finished the sentence, saying "--borrow worry". Then he smiled and said, "It'll all be over in a year anyway" and snuggled down to sleep. Thank you Lord for his resilient spirit.
Thursday, February 5, 2015
Forward, Some "Real" News
Mark is rapidly improving over the past few days, especially his eyes, but he is still having some issues with coordination. We try to keep someone near him all the time when he is moving around, because the very last thing we need right now is for him to fall and clobber his head. Still pretty sensitive there, still some swelling, and all that. But, he is home, and his mood is solid.
Mark's new favorite joke:
[Darth Vader]: Luke, I know what you're getting for Christmas.
[Luke Skywalker]: Nooo! It can't be, how could you know?
[Darth Vader]: I felt your presents!
So, we have been continuously awaiting the oncology report for a long time now. Samples of Mark's tumor were sent off to various places like the Mayo Clinic, Johns Hopkins, and others. The local pathology at Randall Children's and Emanuel eventually concluded that they weren't really fully sure what they had and wanted to wait for the other places to report back. Originally we were supposed to sit down with Oncology during Mark's stay to discuss treatment options, but this delay pushed that appointment beyond Mark's stay, to tomorrow (Friday the 6th). This afternoon, Oncology called again with some answers and some more delays for info. So, at long last, here is what we know.
Mark has what is known as a Pineal Parenchymal Tumor with intermediate differentiation. Before you go googling that, I will try to summarize the high points that we know. In one sentence: It is ridiculously rare, and while it is still a bad cancer to have, it is not quite necessarily the short-term horrible doom as previously feared.
Cancers are graded by the WHO on a scale of 1-4 based on rate of growth, with 1's being generally inconvenient and 4's being short-term doom. The term "differentiation" in the description relates directly to that 1-4 scale, with "well differentiated" being a 1 and "poorly differentiated" being a 4. Intermediate is the middle ground, meaning Mark's tumor is either a grade 2 or grade 3.
While Oncology had previously been careful to not commit to anything specific so far, we had been getting ready to accept that Mark's cancer was on the 4 end of 3, so to speak. This updated information informally changes Mark's tumor from what I'll call a grade 3.75 to a grade 2.5 until we hear something more specific.
Data is limited on this type of cancer simply because it is so extremely rare that there is very little case study available on causes, behaviors, and reactions to treatments. In fact, it wasn't even classified by the WHO until 2000. Additionally, the information available online from the US National Library of Medicine National Institutes of Health has treatmeant/outcome data on only five cases. FIVE cases. This is perfectly in line with everything we know about Mark: Highly unusual, rare, unpredictable.... if you're gonna go, go big and make it interesting. Mark, go ahead and check that checkbox, mission accomplished.
So..... the delayed Oncology appointment was pushed back again, to next Tuesday the 10th, as the Oncology people try to scrounge together what limited information is out there to decide what to do next.
Regarding the possibility of participating in a clinical trial at St. Jude's, turns out Mark's case does not fall into the classifications that apply to the program we thought he might qualify for. This means they really don't have anything special available to him, so treatment there would not appreciably be different than anywhere else.
Several of our friends have been sharing alternative ideas for treatment, because it is well-documented that chemotherapy and irradiation causes all kinds of new problems, and the industries built behind these treatments make a lot of money for the companies that make them go. It would be ignorant to pretend there is not a lobby behind those industries on some level. Also, the internet is filled with tales of treatments with special devices or supplements and combinations of therapies that resulted in miraculous cures. Additionally, treatment options for cancer patients not in the USA are often different because they have access to approaches not regulated/approved by the FDA..... and lack of an FDA blessing by itself is no reason to automatically discard a treatment.
Trust me, if there were any way we could confidently treat Mark that avoided chemo and radiation and accessed some of the better-sourced outlier approaches, we would be all over it. However, while there are in some cases small amounts of data that might merit a closer look on some alternatives, there is essentially nothing on potential alternative approaches for Mark's specific tumor type, because there is hardly anything documented for the mainstream treatments in the first place. The only things out there with any record of anything improving for Mark's tumor type involve the old standbys, so that's what we're stuck with. But, the good news is that since we've gone from a 3.75 to a 2.5, the duration and intensity of chemo and/or irradiation are significantly reduced from what we had been gearing up to deal with. I hate, hate, hate the thought of Mark having to go through this and the damage it may cause, but there just do not appear to be any alternatives that we have any confidence would benefit him at all.
So, good news, bad news. Mostly sort of good news on the whole, I guess. Nothing is set in stone yet, more research and determination is under way, so this thing could still slide backwards from "pretty bad" to "horrible" again, so we are not at all ready to relax. That said, I have no reason to discount that this change could be the result of prayer, and I cannot overstate how emotionally grateful we have been to hear from so many places how many people are keeping Mark and our family in their thoughts. Still, please keep an eye out for the people closer to your lives as well who have their own trials and need support. Every single day in the PICU we saw parents whose children had just been admitted for one reason or another, faces tear-stained and shell-shocked. And for goodness sakes those PICU nurses, I cannot fathom how they manage to come to work every day to see and manage so much personal tragedy and stress, they are simply superhuman and also deserve your prayers.
Until we know more, we'll leave it at that. Thanks for reading.
Mark's new favorite joke:
[Darth Vader]: Luke, I know what you're getting for Christmas.
[Luke Skywalker]: Nooo! It can't be, how could you know?
[Darth Vader]: I felt your presents!
So, we have been continuously awaiting the oncology report for a long time now. Samples of Mark's tumor were sent off to various places like the Mayo Clinic, Johns Hopkins, and others. The local pathology at Randall Children's and Emanuel eventually concluded that they weren't really fully sure what they had and wanted to wait for the other places to report back. Originally we were supposed to sit down with Oncology during Mark's stay to discuss treatment options, but this delay pushed that appointment beyond Mark's stay, to tomorrow (Friday the 6th). This afternoon, Oncology called again with some answers and some more delays for info. So, at long last, here is what we know.
Mark has what is known as a Pineal Parenchymal Tumor with intermediate differentiation. Before you go googling that, I will try to summarize the high points that we know. In one sentence: It is ridiculously rare, and while it is still a bad cancer to have, it is not quite necessarily the short-term horrible doom as previously feared.
Cancers are graded by the WHO on a scale of 1-4 based on rate of growth, with 1's being generally inconvenient and 4's being short-term doom. The term "differentiation" in the description relates directly to that 1-4 scale, with "well differentiated" being a 1 and "poorly differentiated" being a 4. Intermediate is the middle ground, meaning Mark's tumor is either a grade 2 or grade 3.
While Oncology had previously been careful to not commit to anything specific so far, we had been getting ready to accept that Mark's cancer was on the 4 end of 3, so to speak. This updated information informally changes Mark's tumor from what I'll call a grade 3.75 to a grade 2.5 until we hear something more specific.
Data is limited on this type of cancer simply because it is so extremely rare that there is very little case study available on causes, behaviors, and reactions to treatments. In fact, it wasn't even classified by the WHO until 2000. Additionally, the information available online from the US National Library of Medicine National Institutes of Health has treatmeant/outcome data on only five cases. FIVE cases. This is perfectly in line with everything we know about Mark: Highly unusual, rare, unpredictable.... if you're gonna go, go big and make it interesting. Mark, go ahead and check that checkbox, mission accomplished.
So..... the delayed Oncology appointment was pushed back again, to next Tuesday the 10th, as the Oncology people try to scrounge together what limited information is out there to decide what to do next.
Regarding the possibility of participating in a clinical trial at St. Jude's, turns out Mark's case does not fall into the classifications that apply to the program we thought he might qualify for. This means they really don't have anything special available to him, so treatment there would not appreciably be different than anywhere else.
Several of our friends have been sharing alternative ideas for treatment, because it is well-documented that chemotherapy and irradiation causes all kinds of new problems, and the industries built behind these treatments make a lot of money for the companies that make them go. It would be ignorant to pretend there is not a lobby behind those industries on some level. Also, the internet is filled with tales of treatments with special devices or supplements and combinations of therapies that resulted in miraculous cures. Additionally, treatment options for cancer patients not in the USA are often different because they have access to approaches not regulated/approved by the FDA..... and lack of an FDA blessing by itself is no reason to automatically discard a treatment.
Trust me, if there were any way we could confidently treat Mark that avoided chemo and radiation and accessed some of the better-sourced outlier approaches, we would be all over it. However, while there are in some cases small amounts of data that might merit a closer look on some alternatives, there is essentially nothing on potential alternative approaches for Mark's specific tumor type, because there is hardly anything documented for the mainstream treatments in the first place. The only things out there with any record of anything improving for Mark's tumor type involve the old standbys, so that's what we're stuck with. But, the good news is that since we've gone from a 3.75 to a 2.5, the duration and intensity of chemo and/or irradiation are significantly reduced from what we had been gearing up to deal with. I hate, hate, hate the thought of Mark having to go through this and the damage it may cause, but there just do not appear to be any alternatives that we have any confidence would benefit him at all.
So, good news, bad news. Mostly sort of good news on the whole, I guess. Nothing is set in stone yet, more research and determination is under way, so this thing could still slide backwards from "pretty bad" to "horrible" again, so we are not at all ready to relax. That said, I have no reason to discount that this change could be the result of prayer, and I cannot overstate how emotionally grateful we have been to hear from so many places how many people are keeping Mark and our family in their thoughts. Still, please keep an eye out for the people closer to your lives as well who have their own trials and need support. Every single day in the PICU we saw parents whose children had just been admitted for one reason or another, faces tear-stained and shell-shocked. And for goodness sakes those PICU nurses, I cannot fathom how they manage to come to work every day to see and manage so much personal tragedy and stress, they are simply superhuman and also deserve your prayers.
Until we know more, we'll leave it at that. Thanks for reading.
Wednesday, February 4, 2015
Home
Mark was released from the hospital this afternoon.Although this is a small soundbite of good news, Mark is by no means out of the woods. A lot of long, hard days are ahead. We will try to keep you posted.
Tuesday, February 3, 2015
Improvement
 |
| Moving out of PICU with help from RN Kerri |
Last time we did this, stitching the site was traumatic and painful, so this time the staff was careful. They first set him up with Percoset and Fentanyl, but he remained lucid. After bumping him on both of those and then adding some Ketadine, he finally admitted to feeling "a little insane" and said he saw floating particles....lol.
A nurse asked the normal questions, where are you, what day is it, etc. He still got them all correct. Was it enough? I asked him to identify the 5th planet. Pause, then "Jupiter". Count by 7's. Rapid-fire "7 14 21 28 35 42 49 56 63 70 77 84." What's the roman numeral for 17? Pause, then "XVII". Tell me about the Boston Tea Party. He got the high points about taxation protests, the East India Company, the tea dumped into the Boston Harbor, and some colonists dressed as Native Americans,
Seriously, kid? The nurses were...well, flabbergasted. They gave him one more bump on the Ketadine, and he abruptly stopped talking. Finally! Still, he was starting to talk coherently again before they even had time to put the two stitches in.
We were supposed to move out of the PICU after that and were preparing to do so, but his MD decided at the last minute to keep us in there one more night for observation. However, at about 5am we were advised that the PICU had abruptly filled to capacity overnight. As one of the "best" cases in the PICU, we were being moved out to make room for kids sicker than Mark.
We are now on the 8th floor, the top floor where teenagers usually are. All the cool stuff is up here, like a mini theater, and a gaming room. We now have our own shower, and Mark is completely untethered except for the pulse oximeter on his toe.
Mark is still having some mood swings, mainly tied to his meds, but he and Wendi had a great night last night, cracking up to Tim Hawkins videos on YouTube. He ate a full breakfast this morning, and at the moment he and Wendi are napping hard. As soon as this is posted I am going to join them.
Just had a wonderful visit from Amma Jessie from St. Anne's in Washougal, she dropped off a care package for Mark. And upon returning to the room I found a note from PICU RN Bonnie, who stopped by to check on Mark on her day off but found everyone asleep. The staff here is so very amazing.
If you want to stop by in the next few days, we are now in room 817. Thanks for your prayers, and thanks for reading.
Sunday, February 1, 2015
Quiet
Yesterday plumb wore Mark out. He has spent most of today resting, either napping or just laying quietlyThe PICU has a good sized DVD library, and we tend to have two or three movies in here at a time. However, one movie on the list seems to be missing: "Bolt". He has been hoping it would get returned since Thursday, but no luck, probably lost.
This morning, RN Bonnie appeared for the day shift brandishing a copy of Bolt that she absconded with from her grandchildren's collection at home. I swear, the nurses here are unreal, we just love them.
Finally, about 30 minutes ago, Mark came around and wanted the lights on. Since his left eye has not quite recovered as fast as his right eye, he has been hampered with annoying double vision. Once again, Bonnie to the rescue, yesterday she suggested a temporary eye patch. And so now Mark is up and wearing his eye patch, playing on the Kindle, chatting a bit, and mocking the noise I made when I crashed the window blinds down: "That's another sound you don't want to hear during surgery!"
Although he is presently on the good side of his emotional swings, he does have one message for all you guys. He says "You don't want to be me right now."
Thanks for reading.
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