So we got great results yesterday at MDACC! Remember when I said our goal was to get Josh's WBC count down to 170? Well, it dropped all the way to 107.7! So in the last week it fell 83.1, which is really great! His platelets also fell 223 down to 904, so that was exciting also. His red blood cells also went up a smidgen (.09) but we are happy with anything in that area. He is not too far off from normal as far as the RBC count goes, so small increments are OK there.
His uric acid levels fell back into the normal range, so the allopurinol seems to be doing it's job. The only thing that was off this week was his sodium levels. So they said he is either eating too much salt, or not drinkig enough water. We did realize he has had quite a bit of salty stuff the last few days and probably not drinking a lot, so this seems easily fixable.
His blood pressure was super high when we first got there yesterday - 160/78. So they hemmed and hawed over what to do with that, since hypertension is a side effect of Tasigna. Are you seeing a pattern here? If it was on the side effect list then Josh is slowly developing it. He had it checked a few more times before we left and it was back down to normal, so we're hoping it was just a fluke.
Josh is still having difficulty sleeping, which I think will be the hardest part in getting him back to work. His sleep schedule is so janky in a normal situation, it makes me nervous to deal with the rotating sleeping times when he goes back. He has also had a pretty serious muscle cramp in his neck, which is also a side effect of the Tasigna. It has been manageable with advil, though. His scalp is still out of control itchy. And the man is in such desperate need of haircut he is looking pretty out of control with all this scratching he has been doing. I seriously caught the man with a fork scratching all over his head the night before last!!!! I was grossed out, but also realized that a fork makes a pretty good scratcher!
The next few weeks should bring some interesting results for us. One of the big concerns when starting this chemo is that it will be too effective and his WBC count will fall too low. If that happens then they have to start fidgeting around with Josh's meds. Which means extra bloodwork and trips to the medical center. So we are praying that they stabilize in a nice normal range over the next 2 weeks. For those of you that like numbers, the range we are looking for is 4-11. Remember Josh is at 107 right now, so we've got a ways to go.
Our other exciting news is that Josh will get a paycheck tomorrow! It is not for his full monthly salary, but it has really lifted a massive burden from our shoulders. I've been seriously doing some freaking out! Silent freaking out, so as to not further freak out Josh, but freaking out none the less.
Since we are computerless when I got onto facebook today I had 28 messages! So please, please, please don't be offended if I do not respond to you till next week or so! I am over at my parents and Josh is downstairs watching all the kiddos, so he wants me to hurry up and rescue him from the madness! But first I need to research what Aspartate Aminotransferase is! Whatever that is went up so I need to figure it out. Ahhh, what I don't do for this man! :) But I'm happy he's here to do it for!
Thursday, April 28, 2011
Tuesday, April 26, 2011
More blood!
So tonight we are prepping for more bloodwork in the morning! We have been talking all week about what our "goal" is for tomorrow. There is no real expectation other than for the WBC count to fall. But if you know me I need some hard and concrete numbers to know if what we are experiencing is normal. So I made Josh chat with me for an hour about what he wants to see tomorrow. I'm fairly certain I was talking and pestering all during a tv show, so I'm sure he loved that. :) Last week was 190, so I have set a goal of at least 170. 20 seems like a good amount, right? I would be ecstatic if it was 120! From what we have read, most people get back down to normal levels within a month of starting meds. And really, I think this WBC count is just kind of indicator of how things are going. There won't be any "real", concrete results till we have another bone marrow biopsy, which isn't scheduled till July.
Things have been going pretty well as far as side effects. Josh has gotten the bad Tasigna rash all over his head, neck, chest, and upper arms. It is really weird cause it is just looks really rough, red, and bumpy. So far the only itching problems are with his scalp, which I hear is super common. So don't think he has lice if you see him scratching around his head! He initially had a super hard time this week with the allopurinol. He kept saying it gave him the "bubble guts." Thank you, anonymous person at UP who taught Josh this term. He was pretty miserable till he figured out perfect timing in taking it, which has lessened his issues. And perhaps he has been just a teensy less fatigued this week. But I could be imagining that.
Sorry we have been MIA this last week, but it turns out that our hard drive has failed! So now we are going to be without a computer for a while till we figure out what to do. Josh bought the laptop used from someone at work for next to nothing, so it is kind of old and not really capable of all the programs we have on it. So we don't really want to sink more money into it to fix it. So for now I will be coming over to my mom's house all the time to use her computer! Feels like we're back in college doing our laundry! :)
We'll update tomorrow with bloodwork results! Please pray for good numbers!!
Things have been going pretty well as far as side effects. Josh has gotten the bad Tasigna rash all over his head, neck, chest, and upper arms. It is really weird cause it is just looks really rough, red, and bumpy. So far the only itching problems are with his scalp, which I hear is super common. So don't think he has lice if you see him scratching around his head! He initially had a super hard time this week with the allopurinol. He kept saying it gave him the "bubble guts." Thank you, anonymous person at UP who taught Josh this term. He was pretty miserable till he figured out perfect timing in taking it, which has lessened his issues. And perhaps he has been just a teensy less fatigued this week. But I could be imagining that.
Sorry we have been MIA this last week, but it turns out that our hard drive has failed! So now we are going to be without a computer for a while till we figure out what to do. Josh bought the laptop used from someone at work for next to nothing, so it is kind of old and not really capable of all the programs we have on it. So we don't really want to sink more money into it to fix it. So for now I will be coming over to my mom's house all the time to use her computer! Feels like we're back in college doing our laundry! :)
We'll update tomorrow with bloodwork results! Please pray for good numbers!!
Wednesday, April 20, 2011
First Checkup
First of all, I am sitting over at my neighbor's house typing this since our computer is in the shop. Can you believe that now of all times it broke? Seriously, Josh wanted to take some Tums last night but wasn't sure if it was OK, and of course we had no computer to look it up with. Times like this when I wish we weren't so cheap and had smart phones or ipads or something! :)
We went for Josh's first checkup since starting chemo. He has only taken 4 days of meds, so we weren't expecting miracles or anything. And of course there weren't any. Ha! But Josh's WBC went down from a high of 224 to 190. So that's pretty good, but normal is 4-10, so we're still a ways off. All the good stuff that we wanted to go up actually went down, but that is to be expected. We figure the first 8 weeks or so will be more bad before good.
On our way home we got a call from the trial nurse who said that Josh's uric acid levels went up. So they prescibed him some allopuronol to help with that. When white blood cells die they release uric acid which can put a strain on the kidneys and eyes. Which completely explains Josh's horrible looking and painful eyes he has had over the last few days. This is how he described the eye situation - take your fingers and squeeze your eyeball like it is going to pop and that is how it feels all the time. Just lots of pressure and he thinks that is what has been keeping him from sleeping. We are praying that starting this medicine will relieve some of that situation.
We are still dealing with the insurance company. Evidently they have been calling MDACC asking for Dr. Cardama and are told they don't have a doc by that name. He just moved from teaching to actually working with patients, so few people know him yet. And his name is Quintas-Cardama, but just goes by Dr. Quintas. I guess they were never going to call us to tell us about this problem! Agghh, so frustrating! So we gave them better info and hopefully they will verify all the paperwork tomorrow. The first is coming rather quickly and I'm nervous there will be absolutely no paycheck! Eeek! Please pray the Metlife people get their act together.
Once again, thanks for all the wellwishes and messages, and don't be offended if I don't write back to you! Especially now that our computer is down! We will update later next week. Everyone have a great Easter!
We went for Josh's first checkup since starting chemo. He has only taken 4 days of meds, so we weren't expecting miracles or anything. And of course there weren't any. Ha! But Josh's WBC went down from a high of 224 to 190. So that's pretty good, but normal is 4-10, so we're still a ways off. All the good stuff that we wanted to go up actually went down, but that is to be expected. We figure the first 8 weeks or so will be more bad before good.
On our way home we got a call from the trial nurse who said that Josh's uric acid levels went up. So they prescibed him some allopuronol to help with that. When white blood cells die they release uric acid which can put a strain on the kidneys and eyes. Which completely explains Josh's horrible looking and painful eyes he has had over the last few days. This is how he described the eye situation - take your fingers and squeeze your eyeball like it is going to pop and that is how it feels all the time. Just lots of pressure and he thinks that is what has been keeping him from sleeping. We are praying that starting this medicine will relieve some of that situation.
We are still dealing with the insurance company. Evidently they have been calling MDACC asking for Dr. Cardama and are told they don't have a doc by that name. He just moved from teaching to actually working with patients, so few people know him yet. And his name is Quintas-Cardama, but just goes by Dr. Quintas. I guess they were never going to call us to tell us about this problem! Agghh, so frustrating! So we gave them better info and hopefully they will verify all the paperwork tomorrow. The first is coming rather quickly and I'm nervous there will be absolutely no paycheck! Eeek! Please pray the Metlife people get their act together.
Once again, thanks for all the wellwishes and messages, and don't be offended if I don't write back to you! Especially now that our computer is down! We will update later next week. Everyone have a great Easter!
Monday, April 18, 2011
3 days!
We've had quite a few phone calls/texts today checking on Joshua, so we thought we would write a quick post to let all know how he is doing. Today makes three full days on chemo! I think each day has been a little harder on Josh than the day before.
He's having a hard time in the mornings till about 2:00 in the afternoon. Today he looked pretty rotten - just puffy in the face and his eyes look terrible. He said it felt like he was bruised all around his eye. It was pretty puffy but didn't look bruised or anything. And for the past 2 days he has had some pretty serious headaches. Of course Joshua gets headaches a lot, so not sure if it is CML related or what. He has also been super tired during the day and having trouble sleeping at night. He has also been really fatigued - just wearing out super quickly with normal tasks. Then for some reason in the late afternoon things start to clear up a bit for him. Not that he could run a marathon or anything, but he just feels better.
From what we have read, most of these minor side effects last for the first couple of months and then seem to fade away. So we are praying that for him.
We had our first movie night with the kiddos tonight since Annie has been born, so that was really nice. Josh got to lay around with all his snuggle bugs, which is just what he needs. Sadly he couldn't partake of any of our snacks due to his med schedule. But I do believe he will partake in his favorite candy of all time, a Snickers egg, late tonight! :)
He's having a hard time in the mornings till about 2:00 in the afternoon. Today he looked pretty rotten - just puffy in the face and his eyes look terrible. He said it felt like he was bruised all around his eye. It was pretty puffy but didn't look bruised or anything. And for the past 2 days he has had some pretty serious headaches. Of course Joshua gets headaches a lot, so not sure if it is CML related or what. He has also been super tired during the day and having trouble sleeping at night. He has also been really fatigued - just wearing out super quickly with normal tasks. Then for some reason in the late afternoon things start to clear up a bit for him. Not that he could run a marathon or anything, but he just feels better.
From what we have read, most of these minor side effects last for the first couple of months and then seem to fade away. So we are praying that for him.
We had our first movie night with the kiddos tonight since Annie has been born, so that was really nice. Josh got to lay around with all his snuggle bugs, which is just what he needs. Sadly he couldn't partake of any of our snacks due to his med schedule. But I do believe he will partake in his favorite candy of all time, a Snickers egg, late tonight! :)
Saturday, April 16, 2011
Going strong!
A quick note to say it has officially been 24 hours on meds! So far so good - no major aches, pains, or problems. A little bit of muscle pain in his arm, but he's not sure if that is drug related. I know it is early to come to conclusions about his tolerance of this stuff, but we are encouraged that nothing drastic has happened. So far the most exciting thing has been that every time he comes out of the bathroom he announces to all that there was no blood in his urine. :)
We go back Wednesday for more bloodwork and another EKG. Will post those results then if nothing else exciting happens in the next few days.
We go back Wednesday for more bloodwork and another EKG. Will post those results then if nothing else exciting happens in the next few days.
Friday, April 15, 2011
And we've begun!
We are proud to announce that Joshua Paul officially took his first pill tonight! Really don't even know what to think about it! Josh is feeling quite nervous - there are so many side effects of the pills he is apprehensive about how he is going to feel these next few days. And I can understand why - check out this list of common ones (occurring in at least 25% of patients):
Back pain; bone, joint, or muscle aches; constipation; diarrhea; dizziness; dry skin; flushing; gas; hair loss; headache; loss of appetite; mild itching; mild muscle cramps or spasms; mild stomach pain or upset; nausea; runny or stuffy nose; sneezing; tiredness; trouble sleeping; vomiting; weakness.
And here are the uncommon ones:
Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); black or bloody stools; blood in the urine; change in the amount of urine produced; chest pain; confusion; dark urine; fainting; fast or irregular heartbeat; fever or chills; lightheadedness; mental or mood changes (eg, anxiety, depression); numbness, tingling, or weakness of an arm or leg; one-sided weakness; pale stools; seizure; severe or persistent cough or sore throat; severe or persistent dizziness, headache, tiredness, or weakness; severe or persistent muscle pain, weakness, or cramps; severe or persistent stomach pain, loss of appetite, nausea, or vomiting; shortness of breath; slurred speech; sudden, unusual weight gain; swelling of the hands, feet, ankles, or around the eyes; unusual bruising or bleeding; vision changes; vomit that looks like coffee grounds; yellowing of the eyes or skin.
I think the most concerning one deals with the heart, which could lead to sudden death. Here is the info Tasigna has on their site:
What is the most important information to know about TASIGNA?
QT prolongation causes an irregular heartbeat, which may lead to sudden death.
Your doctor should check your heart with a test called an electrocardiogram (ECG): • Before taking TASIGNA
• 7 days after starting TASIGNA
• Regularly during treatment
• After any dose changes
You may lower your chances for having QT prolongation with TASIGNA if you: • Take TASIGNA on an empty stomach.
Umm, no thank you! Don't want any of that. Josh did have a base line EKG this week and then another scheduled for next week. Our day at MDACC was rather uneventful today, which was a nice change. The trial nurse was out today so we met with a different one who got us all set up. Basically all we have to do is take the pills and keep a diary of the times that he takes him. Sounds easy enough!
They gave us a three month supply in this huge brown sack, and when we walked out with it in hand I really felt like we were stealing something! Our insurance company approved us to be in the trial, so we were able to get the meds without paying a single penny for them! We figure we walked out with about $20,000 worth of pills. Insanity! Of course we still have to pay for every other aspect of his care - bloodwork, EKGs, doctor appointments, biopsies. We got the bill for our first meeting with Dr. Quintas and it was $455! For thirty minutes! Ack! And that was truly just for talking to him!
We were also able to chat with the doctor who told us he would redo the paperwork for the insurance company for Josh's disability pay, since he did it wrong the first time. Hopefully all that paperwork gets done. So frustrating to have to let someone else be responsible for everything. I like to do it all myself!
We were surprised on our way home with a call from one of Josh's coworkers saying they wanted to stop by. Luckily my wonderful momma cleaned my house for me today while we were gone! :) Although I'm honestly at the point of not caring too much at this point. It was really nice to finally get to meet some of the folks from his work. I hear so many stories about different people that I have created little cartoon images in my head of what each person looks like. They were so sweet and supportive and surprised us with an envelope of money they had collected for us. They hadn't walked out the house for more than 1 minute when I had to just melt down. I am so touched by how people have reached out to us. Each and every penny will go straight towards paying all these bills that have started coming in! Thank you so much UP folks! I asked Joshua what he wanted to say to you guys, but he just teared up and said he doesn't have the words to express how it has touched him. So you guys made him a big ball of goo!
Right now we are asking people to please pray that Josh is able to tolerate the medication. So many people have to stop this type of med because the side effects are just too great to bear. And in the long term, please pray that he does not become resistant to the Tasigna. I'll post more about that tomorrow. Hope everyone has a great weekend!
Back pain; bone, joint, or muscle aches; constipation; diarrhea; dizziness; dry skin; flushing; gas; hair loss; headache; loss of appetite; mild itching; mild muscle cramps or spasms; mild stomach pain or upset; nausea; runny or stuffy nose; sneezing; tiredness; trouble sleeping; vomiting; weakness.
And here are the uncommon ones:
Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); black or bloody stools; blood in the urine; change in the amount of urine produced; chest pain; confusion; dark urine; fainting; fast or irregular heartbeat; fever or chills; lightheadedness; mental or mood changes (eg, anxiety, depression); numbness, tingling, or weakness of an arm or leg; one-sided weakness; pale stools; seizure; severe or persistent cough or sore throat; severe or persistent dizziness, headache, tiredness, or weakness; severe or persistent muscle pain, weakness, or cramps; severe or persistent stomach pain, loss of appetite, nausea, or vomiting; shortness of breath; slurred speech; sudden, unusual weight gain; swelling of the hands, feet, ankles, or around the eyes; unusual bruising or bleeding; vision changes; vomit that looks like coffee grounds; yellowing of the eyes or skin.
I think the most concerning one deals with the heart, which could lead to sudden death. Here is the info Tasigna has on their site:
What is the most important information to know about TASIGNA?
TASIGNA can cause a possible life-threatening heart problem called QT prolongation.
QT prolongation causes an irregular heartbeat, which may lead to sudden death. Your doctor should check your heart with a test called an electrocardiogram (ECG): • Before taking TASIGNA
• 7 days after starting TASIGNA
• Regularly during treatment
• After any dose changes
You may lower your chances for having QT prolongation with TASIGNA if you: • Take TASIGNA on an empty stomach.
Umm, no thank you! Don't want any of that. Josh did have a base line EKG this week and then another scheduled for next week. Our day at MDACC was rather uneventful today, which was a nice change. The trial nurse was out today so we met with a different one who got us all set up. Basically all we have to do is take the pills and keep a diary of the times that he takes him. Sounds easy enough!
They gave us a three month supply in this huge brown sack, and when we walked out with it in hand I really felt like we were stealing something! Our insurance company approved us to be in the trial, so we were able to get the meds without paying a single penny for them! We figure we walked out with about $20,000 worth of pills. Insanity! Of course we still have to pay for every other aspect of his care - bloodwork, EKGs, doctor appointments, biopsies. We got the bill for our first meeting with Dr. Quintas and it was $455! For thirty minutes! Ack! And that was truly just for talking to him!We were also able to chat with the doctor who told us he would redo the paperwork for the insurance company for Josh's disability pay, since he did it wrong the first time. Hopefully all that paperwork gets done. So frustrating to have to let someone else be responsible for everything. I like to do it all myself!
We were surprised on our way home with a call from one of Josh's coworkers saying they wanted to stop by. Luckily my wonderful momma cleaned my house for me today while we were gone! :) Although I'm honestly at the point of not caring too much at this point. It was really nice to finally get to meet some of the folks from his work. I hear so many stories about different people that I have created little cartoon images in my head of what each person looks like. They were so sweet and supportive and surprised us with an envelope of money they had collected for us. They hadn't walked out the house for more than 1 minute when I had to just melt down. I am so touched by how people have reached out to us. Each and every penny will go straight towards paying all these bills that have started coming in! Thank you so much UP folks! I asked Joshua what he wanted to say to you guys, but he just teared up and said he doesn't have the words to express how it has touched him. So you guys made him a big ball of goo!
Right now we are asking people to please pray that Josh is able to tolerate the medication. So many people have to stop this type of med because the side effects are just too great to bear. And in the long term, please pray that he does not become resistant to the Tasigna. I'll post more about that tomorrow. Hope everyone has a great weekend!
Thursday, April 14, 2011
Prepping for meds!
I kid you not when I say Josh and I were on the phone for hours today trying to deal with all this madness. The poor kiddos just kept being shooed from one room to another just so we could hear. And now,at the end of the day, we really don't know much more than we did when we started this morning. :)
We will be leaving for MDACC first thing in the morning and we have the expectation that Josh will officially begin treatment. You know we were waiting for the approval from the insurance company for the clinical trial, and we think they approved it. Nobody really knows what they are talking about. Different answers from every single person we talked to. All that I know is that there is no way I am leaving that building tomorrow without a bottle of chemo pills in my hand!! If insurance decides not to cover it for whatever reason then we will work on paying it off for the rest our my lives - we just have to get started, right?
All of the disability foolishness will hopefully be worked out tomorrow too. We didn't think we would be meeting with the doctor, but it turns out that we will. We are happy that we will get to talk to him about this whole disability situation. So more bloodwork, another meeting with Dr. Quintas, meeting with the nurse in charge of the trial, and then some sort of review of his blood tests. Another long day it looks like. But an exciting one!!
We are busy trying to figure out Josh's new eating schedule and routine he will have to get into. The pills have to be taken on an empty stomach - no eating 2 hours before or 1 hour after taking the pill. And then the pills have to be 12 hours apart. So it will kind of be a mess for Josh since he rotates days and nights during the week. It means he won't be able to snack on his way home, which is how he stays awake for the long drive! I told him he will have to enjoy eating ice instead. Don't you love eating ice? And Josh's job has a sonic ice machine! Isn't that great? He says eating ice is gross, though. What is wrong with this man? He will also have to eat at specific times during his shift at night, which could prove to be problematic. Josh doesn't get a lunch break, so he grabs a bite whenever he can. He just moved to a different desk that is extremely busy where it can prove to be difficult to snack. I told him he has to just tell his supervisors to deal with it cause he has no choice about these eating times now! We'll see how that goes over. :)
Feeling sad tonight cause we were supposed to take the kids to the Aggie's spring game on Saturday, but it looks like we won't be able to now. You know there is not much in this world that Josh loves more than Aggie football, and it is exciting that Noah is finally at the age to really begin enjoying it. And the boys are slightly obsessed with the Aggie band, so they were really looking forward to it. Noah told us tonight he had the best idea - to bring his Reveille dog with him to the game. Just broke my heart tonight to tell them we won't be able to go. Josh will only be two pills into his treatment, so we are afraid to be so far away in case he isn't feeling well.
So for tomorrow please pray that all the paperwork stuff goes smoothly, and that Josh actually gets some treatment! And please pray for our sweet boys to deal with all this change going on. Noah is so sensitive, and he has been acting a bit off, so please pray for his precious little heart.
We will be leaving for MDACC first thing in the morning and we have the expectation that Josh will officially begin treatment. You know we were waiting for the approval from the insurance company for the clinical trial, and we think they approved it. Nobody really knows what they are talking about. Different answers from every single person we talked to. All that I know is that there is no way I am leaving that building tomorrow without a bottle of chemo pills in my hand!! If insurance decides not to cover it for whatever reason then we will work on paying it off for the rest our my lives - we just have to get started, right?
All of the disability foolishness will hopefully be worked out tomorrow too. We didn't think we would be meeting with the doctor, but it turns out that we will. We are happy that we will get to talk to him about this whole disability situation. So more bloodwork, another meeting with Dr. Quintas, meeting with the nurse in charge of the trial, and then some sort of review of his blood tests. Another long day it looks like. But an exciting one!!
We are busy trying to figure out Josh's new eating schedule and routine he will have to get into. The pills have to be taken on an empty stomach - no eating 2 hours before or 1 hour after taking the pill. And then the pills have to be 12 hours apart. So it will kind of be a mess for Josh since he rotates days and nights during the week. It means he won't be able to snack on his way home, which is how he stays awake for the long drive! I told him he will have to enjoy eating ice instead. Don't you love eating ice? And Josh's job has a sonic ice machine! Isn't that great? He says eating ice is gross, though. What is wrong with this man? He will also have to eat at specific times during his shift at night, which could prove to be problematic. Josh doesn't get a lunch break, so he grabs a bite whenever he can. He just moved to a different desk that is extremely busy where it can prove to be difficult to snack. I told him he has to just tell his supervisors to deal with it cause he has no choice about these eating times now! We'll see how that goes over. :)
Feeling sad tonight cause we were supposed to take the kids to the Aggie's spring game on Saturday, but it looks like we won't be able to now. You know there is not much in this world that Josh loves more than Aggie football, and it is exciting that Noah is finally at the age to really begin enjoying it. And the boys are slightly obsessed with the Aggie band, so they were really looking forward to it. Noah told us tonight he had the best idea - to bring his Reveille dog with him to the game. Just broke my heart tonight to tell them we won't be able to go. Josh will only be two pills into his treatment, so we are afraid to be so far away in case he isn't feeling well. So for tomorrow please pray that all the paperwork stuff goes smoothly, and that Josh actually gets some treatment! And please pray for our sweet boys to deal with all this change going on. Noah is so sensitive, and he has been acting a bit off, so please pray for his precious little heart.
Wednesday, April 13, 2011
Ups and Downs!
Today was a day of ups and downs, along with plenty of waiting. Waiting seems to be such a big thing with MDACC. Filling the hours between appointments is enough to make you crazy! The good part about it is that Josh and I get to snuggle up together and do crossword puzzles, which I have missed doing since the kids were born. Yes, we snuggle up on a couch in a hospital and really just have fun together. I am loving getting to spend so much time with this man!
The good news was that Josh definitely has CML. I know some might think this was bad, but we are really relieved this is the form of leukemia that he has. Josh's white blood cell count last week was 225,000 where normal is 4,000-10,000. So we were quite certain that he had leukemia, but they cannot officially diagnose CML without the bone marrow biopsy results. And sure enough, they found TONS of the Philadelphia chromosome in there. They actually discovered that 9 out of 10 bone marrow cells Josh has are cancer cells. Isn't that crazy? It certainly explains the excessive fatigue he has been experiencing these last few weeks. This Ph chromosome actually creates a special protein called bcr-abl. All of us have the bcr protein, and all of us have the abl protein. In Josh these two proteins have fused together, which then creates the cancer cells. It is reassuring to know that this is one of the most treatable forms of leukemia.
They have decided that the best course of action for Josh it to take Tasigna. This is one of those drugs that used to be a second line drug that was recently approved for first line defense of CML. Can you believe that a one year supply of this drug costs $80,000? It is so incredibly shocking. Dr. Quintas wants to Josh to join a clinical trial they have going on right now that is testing this drug. It is kind of strange because this is an already FDA approved med, so it seems weird for it to be in a trial. But like I said before it was only recently approved for first line use. So they are gathering long term data and results on its use in newly diagnosed patients. The great news about the trial is that they pay for your meds!! ALL of them. For at least five years. So that is an amazing answer to prayer.
We qualify for this trial, but we were unable to start treatment today because the insurance company has yet to approve it. MDACC said that United "hasn't said no, but hasn't said yes." So we waited around for hours today with the hopes of walking out the door with the prescription bottles in hand, only to have to come home empty handed. We are praying that tomorrow all of the insurance madness will be worked out and hopefully Friday we can begin treatment. It seems pretty obvious that it would benefit them for Josh to be in the trial, so we are hoping they will come to the same conclusion. While the trial would cover medicine costs, we/the insurance company would have to pay for all the testing and labs. The trial does not require anything extra, so we would be doing these tests anyway. Please pray they make a timely decision tomorrow so we can start getting Josh better!!
This specific form of oral chemo only targets the cancer cells, which is what makes it so amazing. So none of the terrible side effects of regular chemotherapy. There is a large chance that it will drop his WBC too low, so that is a concern in the beginning, till we get the dosing worked out. There is also a possibility that Josh can't tolerate the medicine because of side effects, which would be very difficult. From there we could try a few different medicines. We are optimistic with the extremely high survival rate under these meds, but at the same time realize that it doesn't work out that way for all patients, even young healthy ones. Josh will have to take it twice a day on an empty stomach, so we're going to have to get into a better routine as far as when we eat! It is really amazing that he will be able to receive his treatment in the comfort of his own home, instead of hooked up to machines in a hospital.
We are expected to see amazing results almost immediately. Within the first three months his blood counts should be drastically better. With CML you never really have remission, since it is something you live with forever. What the doctors look for is instead called a Complete Cytogenetic Response (or CCyR). It really just measures the numbers of Philadelphia chromosomes in a sample of bone marrow. So we should see a major response within 6 months, and the end goal is a complete response by 12 months.
We did find out that Josh will have to have bone marrow testing done every three months for a while, eventually getting to a point of only one a year. So he is feeling quite stressed about that, although the doctor told him that they could knock him out next time if they needed to. Dr. Quintas was very nice in commenting that "people have different pain thresholds." I told Josh he was lucky he didn't call him a little girl. Josh wants me to make sure that I let you all know that he also said that sometimes younger people have a harder time with it. :)
This afternoon Josh called the disability insurance people just to make sure that they had received all the paperwork and he was told that his claim is on hold cause our doctor said that he never told us that Josh can't work. It is absurd!! The very first night Josh called in cause 2 hours before he was supposed to go to work he was told he had cancer. They then called us and told us to take the whole week off. So once with met with the first oncologist we realized that he needed to file a claim cause we were going to be going to some many doctor visits over the next few weeks. Since Josh works nights he has to take off 2 "days" just to spend a few hours at the doctor. And his extreme fatigue is really hitting him hard - there is no possible way he could stay awake and alert enough to do his job all night. And besides that, the man is stressed to the limit and extremely distracted. Is this the person you want giving train orders that are safety sensitive? Definitely not. Of course this all happened at 5:00 pm, so we will have to wait for tomorrow to try to get this all worked out. And now we are starting these extremely powerful drugs with a massive list of side effects. Don't think the man needs to be dizzy and vomiting while trying to answer emergency calls and give verbal authorities that require 100% accuracy. So please pray for all those involved tomorrow to get this paperwork processed!
So happy to be home tonight watching our favorite show, ANTM (yes, Joshua loves it too!), and relaxing with the kiddos fast asleep. Thanks to our wonderful babysitter's today! And we were so surprised and excited to see that Josh's Give Forward Fund has hit the $2000 mark today! So incredibly humbled and thankful for the generosity of our friends, family, and complete strangers!!
We'll update tomorrow when we find out about the insurance coverage for the trial! Have a good night ya'll!
The good news was that Josh definitely has CML. I know some might think this was bad, but we are really relieved this is the form of leukemia that he has. Josh's white blood cell count last week was 225,000 where normal is 4,000-10,000. So we were quite certain that he had leukemia, but they cannot officially diagnose CML without the bone marrow biopsy results. And sure enough, they found TONS of the Philadelphia chromosome in there. They actually discovered that 9 out of 10 bone marrow cells Josh has are cancer cells. Isn't that crazy? It certainly explains the excessive fatigue he has been experiencing these last few weeks. This Ph chromosome actually creates a special protein called bcr-abl. All of us have the bcr protein, and all of us have the abl protein. In Josh these two proteins have fused together, which then creates the cancer cells. It is reassuring to know that this is one of the most treatable forms of leukemia.
They have decided that the best course of action for Josh it to take Tasigna. This is one of those drugs that used to be a second line drug that was recently approved for first line defense of CML. Can you believe that a one year supply of this drug costs $80,000? It is so incredibly shocking. Dr. Quintas wants to Josh to join a clinical trial they have going on right now that is testing this drug. It is kind of strange because this is an already FDA approved med, so it seems weird for it to be in a trial. But like I said before it was only recently approved for first line use. So they are gathering long term data and results on its use in newly diagnosed patients. The great news about the trial is that they pay for your meds!! ALL of them. For at least five years. So that is an amazing answer to prayer.
We qualify for this trial, but we were unable to start treatment today because the insurance company has yet to approve it. MDACC said that United "hasn't said no, but hasn't said yes." So we waited around for hours today with the hopes of walking out the door with the prescription bottles in hand, only to have to come home empty handed. We are praying that tomorrow all of the insurance madness will be worked out and hopefully Friday we can begin treatment. It seems pretty obvious that it would benefit them for Josh to be in the trial, so we are hoping they will come to the same conclusion. While the trial would cover medicine costs, we/the insurance company would have to pay for all the testing and labs. The trial does not require anything extra, so we would be doing these tests anyway. Please pray they make a timely decision tomorrow so we can start getting Josh better!!
This specific form of oral chemo only targets the cancer cells, which is what makes it so amazing. So none of the terrible side effects of regular chemotherapy. There is a large chance that it will drop his WBC too low, so that is a concern in the beginning, till we get the dosing worked out. There is also a possibility that Josh can't tolerate the medicine because of side effects, which would be very difficult. From there we could try a few different medicines. We are optimistic with the extremely high survival rate under these meds, but at the same time realize that it doesn't work out that way for all patients, even young healthy ones. Josh will have to take it twice a day on an empty stomach, so we're going to have to get into a better routine as far as when we eat! It is really amazing that he will be able to receive his treatment in the comfort of his own home, instead of hooked up to machines in a hospital.
We are expected to see amazing results almost immediately. Within the first three months his blood counts should be drastically better. With CML you never really have remission, since it is something you live with forever. What the doctors look for is instead called a Complete Cytogenetic Response (or CCyR). It really just measures the numbers of Philadelphia chromosomes in a sample of bone marrow. So we should see a major response within 6 months, and the end goal is a complete response by 12 months.
We did find out that Josh will have to have bone marrow testing done every three months for a while, eventually getting to a point of only one a year. So he is feeling quite stressed about that, although the doctor told him that they could knock him out next time if they needed to. Dr. Quintas was very nice in commenting that "people have different pain thresholds." I told Josh he was lucky he didn't call him a little girl. Josh wants me to make sure that I let you all know that he also said that sometimes younger people have a harder time with it. :)
This afternoon Josh called the disability insurance people just to make sure that they had received all the paperwork and he was told that his claim is on hold cause our doctor said that he never told us that Josh can't work. It is absurd!! The very first night Josh called in cause 2 hours before he was supposed to go to work he was told he had cancer. They then called us and told us to take the whole week off. So once with met with the first oncologist we realized that he needed to file a claim cause we were going to be going to some many doctor visits over the next few weeks. Since Josh works nights he has to take off 2 "days" just to spend a few hours at the doctor. And his extreme fatigue is really hitting him hard - there is no possible way he could stay awake and alert enough to do his job all night. And besides that, the man is stressed to the limit and extremely distracted. Is this the person you want giving train orders that are safety sensitive? Definitely not. Of course this all happened at 5:00 pm, so we will have to wait for tomorrow to try to get this all worked out. And now we are starting these extremely powerful drugs with a massive list of side effects. Don't think the man needs to be dizzy and vomiting while trying to answer emergency calls and give verbal authorities that require 100% accuracy. So please pray for all those involved tomorrow to get this paperwork processed!So happy to be home tonight watching our favorite show, ANTM (yes, Joshua loves it too!), and relaxing with the kiddos fast asleep. Thanks to our wonderful babysitter's today! And we were so surprised and excited to see that Josh's Give Forward Fund has hit the $2000 mark today! So incredibly humbled and thankful for the generosity of our friends, family, and complete strangers!!
We'll update tomorrow when we find out about the insurance coverage for the trial! Have a good night ya'll!
Tuesday, April 12, 2011
Feeling the love!
While we have felt so very thankful for all the prayers, support, and words of encouragement that we have received over the last 2 weeks, there has still been such a sense of isolation. Illness has such a strange way of doing that. The computer gets turned off, the cell phone is quiet, everybody has gone home and you are left alone. Alone with the cancer. Alone with the thoughts. Alone with the fear. So today when one of those fears has been eased, it has been a HUGE weight off our shoulders.
Besides the many fears we have had for Josh's health, we have been overwhelmed with fears about our finances. This is one of those alones. Alone with the bills. Alone at the check-out at the hospital. We just keep hearing from people over and over again not to worry about it and that it will all work out. But after going to MDACC for just one day and forking over nearly $3000 we had a very real picture of how things are going to go. And to know that this will be forever - every year paying deductibles, and crazy expensive prescriptions is extremely overwhelming.
Some amazing friends of ours have set up a Give Forward site to help ease some of the financial burden we are experiencing. When they emailed yesterday asking if we would mind if they did this, honestly I was afraid to say yes. Taking money is SO incredibly difficult to do. But this burden has been so heavy on our shoulders I just knew this was God. He heard my doubts. He knew my thoughts. And He is proving me wrong!
I sat in the Wal-Mart parking lot this morning and just cried and cried, because I was so ashamed of my doubt. You know those moments where you can actually hear God so clearly it is like he is sitting next to you? This was one of those. So gentle, so loving, all I could hear in my head is Jesus' words, "You have so little faith. Why did you doubt me?" (Matthew 14:31) I guess finances have always been something we have struggled with handing over completely to God. Poor Wyatt in the back seat didn't know what to think was going on! :)
So thank you Josh and Kelly for letting God use you to teach me to trust completely. In ALL areas! We hesitated to even write about all this cause we didn't want it to seem like we were begging for money, but we really wanted to brag on our friends and God's amazing plan for us.
Tomorrow morning we get to meet with Josh's doctor again at MDACC and hopefully we will have an action plan for beating this thing! I will post an update tomorrow night. For now, we offer our complete thanks and gratitude for the donations, prayers, phone calls, emails, meals, and well wishes!
Besides the many fears we have had for Josh's health, we have been overwhelmed with fears about our finances. This is one of those alones. Alone with the bills. Alone at the check-out at the hospital. We just keep hearing from people over and over again not to worry about it and that it will all work out. But after going to MDACC for just one day and forking over nearly $3000 we had a very real picture of how things are going to go. And to know that this will be forever - every year paying deductibles, and crazy expensive prescriptions is extremely overwhelming.
Some amazing friends of ours have set up a Give Forward site to help ease some of the financial burden we are experiencing. When they emailed yesterday asking if we would mind if they did this, honestly I was afraid to say yes. Taking money is SO incredibly difficult to do. But this burden has been so heavy on our shoulders I just knew this was God. He heard my doubts. He knew my thoughts. And He is proving me wrong!
I sat in the Wal-Mart parking lot this morning and just cried and cried, because I was so ashamed of my doubt. You know those moments where you can actually hear God so clearly it is like he is sitting next to you? This was one of those. So gentle, so loving, all I could hear in my head is Jesus' words, "You have so little faith. Why did you doubt me?" (Matthew 14:31) I guess finances have always been something we have struggled with handing over completely to God. Poor Wyatt in the back seat didn't know what to think was going on! :)
So thank you Josh and Kelly for letting God use you to teach me to trust completely. In ALL areas! We hesitated to even write about all this cause we didn't want it to seem like we were begging for money, but we really wanted to brag on our friends and God's amazing plan for us.
Tomorrow morning we get to meet with Josh's doctor again at MDACC and hopefully we will have an action plan for beating this thing! I will post an update tomorrow night. For now, we offer our complete thanks and gratitude for the donations, prayers, phone calls, emails, meals, and well wishes!
Thursday, April 7, 2011
Disability
Just a short note to once again ask for prayer. We are wading through the piles of paperwork we have accumulated this last week, and are especially nervous about the whole short term disability situation through UP. Everybody we have talked to has told us something different, and it doesn't look like we will be able to get the forms completed by their deadlines to receive full payment. Specifically I am worried about getting the forms filled out by the doctors and then mailed to the Railroad Retirement Board on time (they fund part of his disability). Please pray that tomorrow we are able to talk to somebody who actually knows what they are doing, and also for expedient processing of our forms at MDACC. Really don't know what we will do if Josh's paycheck is delayed next month. I know Josh is really feeling this specific burden tonight, so please pray that he is able to sleep well tonight without too much stress. Don't really think he needs any more of that right now!
And for those of you interested, here is an article that talks about the chemo we are hoping to get Joshua on.
Goodnight!
And for those of you interested, here is an article that talks about the chemo we are hoping to get Joshua on.
Goodnight!
Wednesday, April 6, 2011
One down, ? to go
Can I tell you how tired we are over here? One of us more than the other, but sleepy nonetheless. We had to leave the house at 5:45 this morning, which you know neither of us are good at. So shortly we will be off to bed! :)
Today we completed all of the paperwork to get admitted as a patient, met with his new doctor, had a bone marrow biopsy and aspiration, and then some x-rays. It was quite a day! We started the day with high spirits, and ended it rather heartbroken. Not for us, but just for all of the hurting people we saw today.
We are very happy with Josh's new doctor. He was extremely soothing and just exuded confidence and knowledge. He explained CML so perfectly as well as all the treatment options. Josh just told me that I absolutely must reference that he was just like Antonio Banderas. He is from Spain and is pretty much just what you might imagine - so European cool with his hip clothes. Oh, and his accent. At the end of our conversation he just stood up and then said, "Lay down, I want to touch your belly." At that moment we could just not control our laughter. You just have to imagine it with Antonio saying it. So funny! He was also witty and just generally easy going. So we are super pleased with him.
As far as the cancer goes, he was hesitant to begin treatment without having a definite diagnosis. Evidently the only 100% diagnosis of CML can come after finding the Philadelphia chromosome in the bone marrow. So we have to wait for those labs to be done before they will begin treatment. Dr. Quintas said not to worry, since he has had it for some time now already. So we have an appointment next Wednesday to come back and get the results as well as set up a treatment plan. It seems strange, but we are praying that Josh really does have CML. If he does not, then he definitely has some other type of leukemia, which are more difficult to treat.
We are excited that he thinks Josh will be able to get into a clinical trial they have going on at the center. He would either be getting Tasigna or the newest med which he says is even better than Tasigna. We are excited! And so very thankful that the technology has come so far in such a short time. He told us that 10 years ago half his patients were dead 4 years after diagnosis. So now the 95% success rate in such a short time is truly amazing. They say this new drug will have even better results.
The bad part to our day was Josh's bone marrow aspiration. He was already extremely nervous about it, and if you know Josh you know he can't handle pain. He even told the nurse as they took him off, "I'm a really big sissy." I think the straw that broke the camel's back was that they wouldn't let me go back with him. And they didn't tell us that till 20 seconds before they took him back, so I don't think that helped any. He was gone for close to an hour and when he came out I immediately knew it didn't go well. The man looked like he had run a marathon, completely drenched in sweat. He had to change clothes he had sweated through his jeans so much. Absolutely broke my heart. He said that they told him it would feel like pressure, but he equated it more to the pressure you might feel with a building crushing your hips. They told us that his blood is so incredibly thick right now due to the massive amounts of cancer cells and platelets sticking together, so maybe that is why it was more difficult. Please pray Josh doesn't have to go through this again till for another full year.
Our day ended with a non-traumatic set of x-rays. These of course were no big deal, but I think it might have been the hardest part of our day. There was a man sitting in front of us with his son who was waiting to be x-rayed. The dad was about 50 or so, and his son must have been just a little over 20. The boy was not in good shape and was sitting in a hospital gown in a wheelchair. The dad walked off for a sec and then came back with a blanket in his arms, and tenderly wrapped it around his son, tucking it in behind his neck. It was so quiet, so gentle, so loving. Then he put his big, rough, hand on the back of the boy's head and neck, rubbed it back and forth. Just like we do with our boys all the time. All I could think was that this grown man is still his little boy. I looked over at Josh to nudge him to watch, only to find Josh staring with tears in his eyes. So we both melted down. Everything about cancer is just so wrong. No dad should have to watch his son dwindle away.
It seem so strange the things that have affected us the most. It is really surreal how our life has completely stopped, while everybody elses is moving ahead at full speed. Haircuts, dinners, movies, work. And we are here just waiting. Really the strangest feeling I have ever experienced. Can't wait for things to get moving next week.
Today we completed all of the paperwork to get admitted as a patient, met with his new doctor, had a bone marrow biopsy and aspiration, and then some x-rays. It was quite a day! We started the day with high spirits, and ended it rather heartbroken. Not for us, but just for all of the hurting people we saw today.
We are very happy with Josh's new doctor. He was extremely soothing and just exuded confidence and knowledge. He explained CML so perfectly as well as all the treatment options. Josh just told me that I absolutely must reference that he was just like Antonio Banderas. He is from Spain and is pretty much just what you might imagine - so European cool with his hip clothes. Oh, and his accent. At the end of our conversation he just stood up and then said, "Lay down, I want to touch your belly." At that moment we could just not control our laughter. You just have to imagine it with Antonio saying it. So funny! He was also witty and just generally easy going. So we are super pleased with him.
As far as the cancer goes, he was hesitant to begin treatment without having a definite diagnosis. Evidently the only 100% diagnosis of CML can come after finding the Philadelphia chromosome in the bone marrow. So we have to wait for those labs to be done before they will begin treatment. Dr. Quintas said not to worry, since he has had it for some time now already. So we have an appointment next Wednesday to come back and get the results as well as set up a treatment plan. It seems strange, but we are praying that Josh really does have CML. If he does not, then he definitely has some other type of leukemia, which are more difficult to treat.
We are excited that he thinks Josh will be able to get into a clinical trial they have going on at the center. He would either be getting Tasigna or the newest med which he says is even better than Tasigna. We are excited! And so very thankful that the technology has come so far in such a short time. He told us that 10 years ago half his patients were dead 4 years after diagnosis. So now the 95% success rate in such a short time is truly amazing. They say this new drug will have even better results.
The bad part to our day was Josh's bone marrow aspiration. He was already extremely nervous about it, and if you know Josh you know he can't handle pain. He even told the nurse as they took him off, "I'm a really big sissy." I think the straw that broke the camel's back was that they wouldn't let me go back with him. And they didn't tell us that till 20 seconds before they took him back, so I don't think that helped any. He was gone for close to an hour and when he came out I immediately knew it didn't go well. The man looked like he had run a marathon, completely drenched in sweat. He had to change clothes he had sweated through his jeans so much. Absolutely broke my heart. He said that they told him it would feel like pressure, but he equated it more to the pressure you might feel with a building crushing your hips. They told us that his blood is so incredibly thick right now due to the massive amounts of cancer cells and platelets sticking together, so maybe that is why it was more difficult. Please pray Josh doesn't have to go through this again till for another full year.
Our day ended with a non-traumatic set of x-rays. These of course were no big deal, but I think it might have been the hardest part of our day. There was a man sitting in front of us with his son who was waiting to be x-rayed. The dad was about 50 or so, and his son must have been just a little over 20. The boy was not in good shape and was sitting in a hospital gown in a wheelchair. The dad walked off for a sec and then came back with a blanket in his arms, and tenderly wrapped it around his son, tucking it in behind his neck. It was so quiet, so gentle, so loving. Then he put his big, rough, hand on the back of the boy's head and neck, rubbed it back and forth. Just like we do with our boys all the time. All I could think was that this grown man is still his little boy. I looked over at Josh to nudge him to watch, only to find Josh staring with tears in his eyes. So we both melted down. Everything about cancer is just so wrong. No dad should have to watch his son dwindle away.
It seem so strange the things that have affected us the most. It is really surreal how our life has completely stopped, while everybody elses is moving ahead at full speed. Haircuts, dinners, movies, work. And we are here just waiting. Really the strangest feeling I have ever experienced. Can't wait for things to get moving next week.
Tuesday, April 5, 2011
Tomorrow!!
We cannot even believe it, but at 7:30 in the morning we begin our journey with MD Anderson! We are so excited! Well, I am super excited. Josh is nervous. :) They told us they would call us by noon on Wednesday just to set up the appointment, but they called just before closing today and said we could come first thing tomorrow.
They also said we have to pay our deductible up front, before they do anything. So we had a good one hour panic mode, trying to figure everything out financially. I mean, seriously, just freak out mode. Josh's insurance is just so awful. So we're figuring out a few thousand for the deductible, and then we have to pay for his meds this week too. One month of the stuff will cost around $3000. Isn't that out of control? Luckily after the deductible it is only 15% of that. So we're working on juggling funds around to figure this month out. Josh says MDA better be worth it, cause we could definitely take care of this cheaper somewhere else. Sounds just like him, huh? :) His frugality is one of my favorite things about him!
They told us to plan to be there all day, rotating to different appointments. They will do more bloodwork, some x-rays, and then a bone marrow biopsy. Obviously there is some apprehension about the latter. We have been reassured though, that it is not too bad.
We are feeling like God has paved the way for us with this. We were told it would be days before Kelsey-Seybold sent our info, then it would be days for them to review our application, and then days to get an appointment. And here we are going tomorrow morning. My heart is overflowing with thankfulness tonight!
We talked with the boys at dinner tonight about how Daddy's blood is sick and that he will see the doc tomorrow. And then we stressed that they have to be gentle with Daddy tomorrow. If you know the boys you know that will be a hard task for them! Immediately Noah hopped off his seat and whispered to me that he wants to make Daddy a "well card" tomorrow. That just melts my heart! Of course Wyatt then got in on the action with whispering that he wants to get Daddy a "prize." I love those boys. After they ate they ran off into the school room, shut the door, and colored some pictures for him. Noah wrote all over his - I love you. From Noah. I just love their tender hearts. And nothing says get well soon like a lime green, pink, and orange batman!
So this is our prayer list for tomorrow:
They also said we have to pay our deductible up front, before they do anything. So we had a good one hour panic mode, trying to figure everything out financially. I mean, seriously, just freak out mode. Josh's insurance is just so awful. So we're figuring out a few thousand for the deductible, and then we have to pay for his meds this week too. One month of the stuff will cost around $3000. Isn't that out of control? Luckily after the deductible it is only 15% of that. So we're working on juggling funds around to figure this month out. Josh says MDA better be worth it, cause we could definitely take care of this cheaper somewhere else. Sounds just like him, huh? :) His frugality is one of my favorite things about him!
They told us to plan to be there all day, rotating to different appointments. They will do more bloodwork, some x-rays, and then a bone marrow biopsy. Obviously there is some apprehension about the latter. We have been reassured though, that it is not too bad.
We are feeling like God has paved the way for us with this. We were told it would be days before Kelsey-Seybold sent our info, then it would be days for them to review our application, and then days to get an appointment. And here we are going tomorrow morning. My heart is overflowing with thankfulness tonight!
We talked with the boys at dinner tonight about how Daddy's blood is sick and that he will see the doc tomorrow. And then we stressed that they have to be gentle with Daddy tomorrow. If you know the boys you know that will be a hard task for them! Immediately Noah hopped off his seat and whispered to me that he wants to make Daddy a "well card" tomorrow. That just melts my heart! Of course Wyatt then got in on the action with whispering that he wants to get Daddy a "prize." I love those boys. After they ate they ran off into the school room, shut the door, and colored some pictures for him. Noah wrote all over his - I love you. From Noah. I just love their tender hearts. And nothing says get well soon like a lime green, pink, and orange batman!So this is our prayer list for tomorrow:
- that they don't find something worse than CML
- that Josh's CML will be in the chronic phase
- that the bone marrow biopsy will be nearly painless
- that financially we are able to pay for the visit as well as the prescriptions
Monday, April 4, 2011
More waiting...
Today we had our consultation with the oncologist at Kelsey-Seybold, since that is where Josh was diagnosed. At the end of the day now, thinking over it all, it was really such a non-event. We have spent so many hours online over the last three days that he was mostly just repeating what we already knew, other than that Josh's spleen is enlarged.
Our main interest/concern with today's appointment was to find out what phase of the cancer Josh is in. Other cancers have stages, but CML has phases. They are chronic phase, accelerated phase, and blast phase. We were really hoping to have caught this at the chronic phase. Unfortunately they were not able to tell us that today. They need to to a bone marrow biopsy to find that out. The doc did say that the preliminary results look like chronic and small chance of accelerated since Josh's white blood cell count is so out of control high.
There are three main drugs that they use to treat CML. The main drug being Gleevec, which is pretty much considered a wonder drug. The two other drugs have in the past been saved for use when Gleevec fails. Well recent clinical trials have showed that starting with one of the 2 stronger drugs actually gives better results. So just six short months ago they were approved for use as a first line defense against CML. We feel so blessed that this has happened in time for us to be some of the first people to start with the best drugs possible.
So Josh's treatment plan consists of this oral chemo pill daily (for the rest of his life), along with tons of blood tests and occasional bone marrow tests to see how he's doing. A bone marrow transplant is a last option, only used in the case that nothing else works. We are relieved to hear this, since we know how hard it can be to find a match, and alsois a very risky procedure. Everything we have read said that the five year survival rate is phenomenal - around 95%. This is great news, but you know, I just keep thinking about how much I want Josh around for so much more than five years. So today we were anxious to ask about the average life expectancy for this, but sadly he didn't really have an answer. Gleevec itself is so new, with people just starting it less than ten years ago. And now with these other drugs there is really no data. Regardless, we are feeling very optimistic after our meeting.
We did not start treatment today like they wanted, cause we are still waiting to get into MD Anderson. The process to get an appointment is kind of ridiculous. They have to decide to accept you as a patient. We have been urged to start treatment as soon as possible, as in a few days. So to have to wait to even get a consult with MD Anderson is super frustrating. We have been told by Josh's case worker that they will call us Wednesday to set up an appointment. Our goal is to have Josh starting treatment by Friday, so please pray that we can get started by then.
So to sum it up, we had a good day. We didn't really get the answers we were looking for, but it was nice to hear it all from a doctor and not just the internet. :) Emotionally, each day has been so much better than this awful April Fool's joke we received Friday. Friday night and all day Saturday was pretty much spent crying, and then yesterday we decided to get out of the house and busy our minds with a trip to Kemah. It was a tough day for me, just letting all my thoughts run wild about the future, watching Josh with the boys. And of course with his precious Annie. But today the laughter returned to our house. Things that Josh and I normally laugh about and make fun of were actually funny again. And for that, I am thankful.
Our main interest/concern with today's appointment was to find out what phase of the cancer Josh is in. Other cancers have stages, but CML has phases. They are chronic phase, accelerated phase, and blast phase. We were really hoping to have caught this at the chronic phase. Unfortunately they were not able to tell us that today. They need to to a bone marrow biopsy to find that out. The doc did say that the preliminary results look like chronic and small chance of accelerated since Josh's white blood cell count is so out of control high.
There are three main drugs that they use to treat CML. The main drug being Gleevec, which is pretty much considered a wonder drug. The two other drugs have in the past been saved for use when Gleevec fails. Well recent clinical trials have showed that starting with one of the 2 stronger drugs actually gives better results. So just six short months ago they were approved for use as a first line defense against CML. We feel so blessed that this has happened in time for us to be some of the first people to start with the best drugs possible.
So Josh's treatment plan consists of this oral chemo pill daily (for the rest of his life), along with tons of blood tests and occasional bone marrow tests to see how he's doing. A bone marrow transplant is a last option, only used in the case that nothing else works. We are relieved to hear this, since we know how hard it can be to find a match, and alsois a very risky procedure. Everything we have read said that the five year survival rate is phenomenal - around 95%. This is great news, but you know, I just keep thinking about how much I want Josh around for so much more than five years. So today we were anxious to ask about the average life expectancy for this, but sadly he didn't really have an answer. Gleevec itself is so new, with people just starting it less than ten years ago. And now with these other drugs there is really no data. Regardless, we are feeling very optimistic after our meeting.
We did not start treatment today like they wanted, cause we are still waiting to get into MD Anderson. The process to get an appointment is kind of ridiculous. They have to decide to accept you as a patient. We have been urged to start treatment as soon as possible, as in a few days. So to have to wait to even get a consult with MD Anderson is super frustrating. We have been told by Josh's case worker that they will call us Wednesday to set up an appointment. Our goal is to have Josh starting treatment by Friday, so please pray that we can get started by then.
So to sum it up, we had a good day. We didn't really get the answers we were looking for, but it was nice to hear it all from a doctor and not just the internet. :) Emotionally, each day has been so much better than this awful April Fool's joke we received Friday. Friday night and all day Saturday was pretty much spent crying, and then yesterday we decided to get out of the house and busy our minds with a trip to Kemah. It was a tough day for me, just letting all my thoughts run wild about the future, watching Josh with the boys. And of course with his precious Annie. But today the laughter returned to our house. Things that Josh and I normally laugh about and make fun of were actually funny again. And for that, I am thankful.
Saturday, April 2, 2011
Diagnosis
I'm sure this is a shock to most reading this, and we are honestly just as surprised as you are. This week Josh received an initial diagnosis of leukemia after having some bloodwork done. Specifically it is Chronic Myeloid Leukemia (CML). We have been told that this is extremely treatable, and there are multiple treatment options that are highly effective. We are really not certain of much, as he has yet to meet with a hemtologist due to the weekend. We will be meeting with the doc on Monday where we should get some more answers. We are also currently waiting on an appointment with M.D. Anderson. Some of you who have already heard are asking how this all came about, so wanted to give a brief explanation.
Some of you might remember how Josh almost passed out shortly after Annie's birth. Well, he woke me up earlier this week telling me that he had another episode like that on his way home. He had to stop the car, get some food, and sit for a while before he continued on. He also said that this has happened a couple of times since Annie's birth, but he hasn't mentioned it. So he looked up hypoglycemia online and realized that he had nearly every single symptom listed. So after he went to sleep I made him an appointment with the doc he saw after his car accident last year. The man is never sick, so we don't have a regular doc.
His main concerns were the issues after prolonged not eating and fatigue. Of course the fatigue thing is super hard to gauge with his bizarre sleeping schedule, due to the night shift. He also discovered a strange bruise on his thigh that morning. It was pretty bad and he couldn't remember hurting himself, so he showed that to the doc as well. At his appointment she concluded that yes, he was probably hypoglycemic but they needed to get some blood work done to make sure. He went in the next day to have it done and she told him she would call back in 2 weeks. With Josh's strong family history of diabetes we thought that would be a worst case scenario.
So when she called back Friday leaving a message saying it was important, I immediately knew something was seriously wrong. Sure enough, it was worse than we could have imagined.
We have spent the last 24 hours basically in shock. There is just a sadness permeating our household. We are anxious for Monday so we can learn how advanced the disease is. It turns our the 2 main symptoms of CML are fatigue and unexplained bruising. We are so thankful for this hypoglycemia madness, or else we would have never gone to the doctor otherwise. Poor Josh has been fatigued since he started working at UP. Josh's job has been really great - he called in Friday night and they called us back today letting us know that he doesn't need to come in all week. We are so grateful for that, cause it was a major concern for us.
Some of you have sent emails or called, and we really appreciate it. We are feeling so supported right now! I am just having a hard time talking about this. It just seems like if I don't voice it then it can't be real. And just about every other word I'm having to stop and pull myself together just to speak. So please don't think I don't want to talk to you if you can't get a hold of us! This is just so new it is overwhelming.
So we need prayers! We are asking for some specific ways you can pray for us:
Laura
Some of you might remember how Josh almost passed out shortly after Annie's birth. Well, he woke me up earlier this week telling me that he had another episode like that on his way home. He had to stop the car, get some food, and sit for a while before he continued on. He also said that this has happened a couple of times since Annie's birth, but he hasn't mentioned it. So he looked up hypoglycemia online and realized that he had nearly every single symptom listed. So after he went to sleep I made him an appointment with the doc he saw after his car accident last year. The man is never sick, so we don't have a regular doc.
His main concerns were the issues after prolonged not eating and fatigue. Of course the fatigue thing is super hard to gauge with his bizarre sleeping schedule, due to the night shift. He also discovered a strange bruise on his thigh that morning. It was pretty bad and he couldn't remember hurting himself, so he showed that to the doc as well. At his appointment she concluded that yes, he was probably hypoglycemic but they needed to get some blood work done to make sure. He went in the next day to have it done and she told him she would call back in 2 weeks. With Josh's strong family history of diabetes we thought that would be a worst case scenario.
So when she called back Friday leaving a message saying it was important, I immediately knew something was seriously wrong. Sure enough, it was worse than we could have imagined.
We have spent the last 24 hours basically in shock. There is just a sadness permeating our household. We are anxious for Monday so we can learn how advanced the disease is. It turns our the 2 main symptoms of CML are fatigue and unexplained bruising. We are so thankful for this hypoglycemia madness, or else we would have never gone to the doctor otherwise. Poor Josh has been fatigued since he started working at UP. Josh's job has been really great - he called in Friday night and they called us back today letting us know that he doesn't need to come in all week. We are so grateful for that, cause it was a major concern for us.
Some of you have sent emails or called, and we really appreciate it. We are feeling so supported right now! I am just having a hard time talking about this. It just seems like if I don't voice it then it can't be real. And just about every other word I'm having to stop and pull myself together just to speak. So please don't think I don't want to talk to you if you can't get a hold of us! This is just so new it is overwhelming.
So we need prayers! We are asking for some specific ways you can pray for us:
- ultimately, healing for Josh's body
- wisdom for the doctors
- guidance for us to make the right decisions
- supernatural financial provision
- protection for our kids (emotionally)
Laura
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