Today was Rion's first trip to the medical oncologists office all by himself!! I felt like a mother letting her son go off to school for the 1st time- I was afraid he would forget to ask the doctor something, or they'd have trouble drawing blood and I wouldn't be there to hold his hand, basically I was afraid I would be needed but I wouldn't be there. But of course everything went fine & Rion probably enjoyed NOT having me there to butt in all the time & ask a million questions : )
He got the all-clear this morning from the medical oncologist to start his next round of Temodar tomorrow. There was a small concern that his white blood cells might not be high enough because they were slightly low last week but they have rebounded nicely and are perfect now. We were also concerned because Rion still has frequent bruising on his legs of unknown origin which before indicated that his platelets were low; this time the doctor says it's due to spatial awareness, more specifically his lack there of. Even though his vision is spot on, Rion still runs into things frequently because he isn't as acutely aware of his body positioning at all times like most people are. But this, like everything else so far, is just a minor inconvenience and isn't really a hindrance on every day life.
We feel much, much more prepared as far as what to expect from the Temodar & how to be pro-active instead of re-active. We are going to keep Rion on round-the-clock anti-nausea medication even if he is feeling good since last time he suffered from vomiting with no nausea (which the doctor says can be controlled with anti-nausea meds.) We are planning a very low key week next week and next weekend. I'm going to have healthy, mild dinners for us each night so if he does feel up to eating it should be easy on his stomach. Additionally he is going to make a conscious effort to snack frequently and eat small meals so there is always food in his stomach- another way to combat the vomiting (and I bet it will help with fatigue too.) And no alcohol for the 5 days he is on chemo...I know that drinking at all on anti-seizure medication is controversial but both sets of oncologists agree that one drink a day is fine. It may seem silly but with everything Rion has had to give us, letting him have a beer every now & then is really important to maintain a sense of normalcy. However it didn't seem to go over so well last time he was actively taking the chemo so we're cutting it out this time.
I'm not going to lie, the first round of chemo sucked. We were constantly faced with new (and worsening) side effects and it felt like each time we found something that helped alleviate the problem then something new would come up. Now we have an arsenal of tools to use instead of scrambling around using trial & error to figure out what works. Irregardless, we are both apprehensive about this up coming week.
One last tid bit, the doctor indicated this morning that they will more than likely increase his dosage of Temodar after this month if everything goes ok and his levels remain up or don't dip too much. Hopefully that won't cause the side effects to be unbearable and Rion will be able to manage it for the 10 months that he will have on that dosage. It's hard not to feel like we are "losing" a year to the chemo (a year and a half if you go back to when this all started last November) but I keep telling myself it will all be worth it if he continues to have consistent MRI's (I'm not saying clear in light of the information that we received last week that there is in fact still iffy spots on the MRI.) I'm already ready to have this all behind us and have Rion back to his old self. But maybe I'm holding on to an unrealistic expectation and should just be grateful for every day we have together, I am definitly grateful that God has given us more time together!
I hope everyone has a great weekend!
Emily
Friday, May 18, 2012
Tuesday, May 15, 2012
Eye exam
Rion went this morning to have his eyes examined and everything looks good! The radiation oncologist had recommended that we do this to check for any changes in vision both now and in the next few months when the delayed side effects of radiation treatment may occur. The optometrist did say that he has astigmatism in his left eye but it's very possible he has had it for quite some time and it's not necessarily a side effect from treatment. The astigmatism is very slight, definitely not bad enough to warrant glasses or surgery. Rion went ahead and scheduled a follow up exam for 6 months to so we can check for any changes in his vision. We are very relieved to know his vision has not suffered since this was one of our major concerns with undergoing radiation treatment!
Thursday, May 10, 2012
Misled or mistaken?
Today's was Rion's first blood work since he started his new chemo regiment last month and the results are good: his platelets are really good (170 I think) and the only think that is slightly off is his white blood cells. We are going back next Friday to repeat the blood work and make sure everything is set for Rion to start his chemo again on May 19th. The doctor will call in another prescription for the chemo to be delivered next week and then we're all set to go at it again. Hopefully we'll have a better handle on the side effects this time and Rion won't be as sick as he was before.
Unfortunately something else happened at the appointment that I can't let go of. Duke sent down a very comprehensive summary of our appointments up there last month along with a verbal description of the MRI Rion had. For some reason the oncologist in Athens felt that we needed a copy of this. When we were up there all they told us and pointed out on the MRI were good things: re-sectioning cavity closing up, iffy spots from Feb MRI gone, & swelling gone down. Well...according to the report there is a new area of concern, approximately 4mm in size, on the edge of the re-sectioning cavity that is most likely more of the same iffy spots we saw before. There is still some possibility that it could just be swelling from the radiation which the oncologist today was quick to point out. But then why would the report say that it's "most likely" to be residual from the cancerous areas we saw in February? I am having a very hard time with this. The doctor agreed that we would need to have additional MRI's (told him the next one is scheduled for June 27th) and he said that the chemo dosage would be adjusted (increased) if this area grew larger. Why would he even mention that if he thought it was just swelling from the radiation?
Could it already be growing back?
So...while we had a good appointment for the most part I am stuck on this and can't let it go. We will get a chance to talk with the doctor again next Friday to discuss the blood work and I'm torn about what to do: do I ask him to be more thorough explaining what they think this area is on the MRI and risk getting more information than I want to know? Or do we just play along and accept everything the doctors say at face value? The one complaint (compliment?) I have about every single doctor we've seen is that no one has mentioned the chance of Morton coming back or how long it will take before he does. Yes, you can tell me to stay positive and pray that God will heal Rion (after all, He has already brought him through surgery & radiation with minimal side effects) but let's be realistic: how many people do you know who were diagnosed with a malignant brain tumor and are still living 10? 15? 20 years later? The book that everyone keeps telling me to read, the one that I can't remember the name of but it was written by a brain tumor "survivor," yeah, if you google him, you'll find out that he recently passed away FROM BRAIN CANCER. Um, not much inspiration there folks. I want to believe that after this year of chemo we'll never have to deal with Morton or cancer again but realistically I know that's not likely. And today for the first time I felt like the doctors know that as well, no matter how guarded they are with their words or how quick they are to smooth things over when they feel like they've said too much. Maybe it's time to start asking the hard questions and accepting things that we've ignored up until this point.
Sorry that this update isn't all puppies and rainbows but I'm not feeling very puppies and rainbow-y today.
Emily
Unfortunately something else happened at the appointment that I can't let go of. Duke sent down a very comprehensive summary of our appointments up there last month along with a verbal description of the MRI Rion had. For some reason the oncologist in Athens felt that we needed a copy of this. When we were up there all they told us and pointed out on the MRI were good things: re-sectioning cavity closing up, iffy spots from Feb MRI gone, & swelling gone down. Well...according to the report there is a new area of concern, approximately 4mm in size, on the edge of the re-sectioning cavity that is most likely more of the same iffy spots we saw before. There is still some possibility that it could just be swelling from the radiation which the oncologist today was quick to point out. But then why would the report say that it's "most likely" to be residual from the cancerous areas we saw in February? I am having a very hard time with this. The doctor agreed that we would need to have additional MRI's (told him the next one is scheduled for June 27th) and he said that the chemo dosage would be adjusted (increased) if this area grew larger. Why would he even mention that if he thought it was just swelling from the radiation?
Could it already be growing back?
So...while we had a good appointment for the most part I am stuck on this and can't let it go. We will get a chance to talk with the doctor again next Friday to discuss the blood work and I'm torn about what to do: do I ask him to be more thorough explaining what they think this area is on the MRI and risk getting more information than I want to know? Or do we just play along and accept everything the doctors say at face value? The one complaint (compliment?) I have about every single doctor we've seen is that no one has mentioned the chance of Morton coming back or how long it will take before he does. Yes, you can tell me to stay positive and pray that God will heal Rion (after all, He has already brought him through surgery & radiation with minimal side effects) but let's be realistic: how many people do you know who were diagnosed with a malignant brain tumor and are still living 10? 15? 20 years later? The book that everyone keeps telling me to read, the one that I can't remember the name of but it was written by a brain tumor "survivor," yeah, if you google him, you'll find out that he recently passed away FROM BRAIN CANCER. Um, not much inspiration there folks. I want to believe that after this year of chemo we'll never have to deal with Morton or cancer again but realistically I know that's not likely. And today for the first time I felt like the doctors know that as well, no matter how guarded they are with their words or how quick they are to smooth things over when they feel like they've said too much. Maybe it's time to start asking the hard questions and accepting things that we've ignored up until this point.
Sorry that this update isn't all puppies and rainbows but I'm not feeling very puppies and rainbow-y today.
Emily
Monday, May 7, 2012
More about me than Rion
I've been racking my brain all weekend for something to blog about but there just really isn't anything new to say about Rion. He is doing very good for the most part- he still takes a nap (or 2) most days and this weekend he slept for 12 hours each day including all his napping. I don't think his platelets are down because he doesn't have any unusual bruising like he did before. We'll know for sure Thursday when he goes for his first round of blood work since completing cycle 1 of 12 of the new chemo regiment 2 weeks ago. That is how this cycle will work- take chemo days 1-5, blood work on (or around) days 21 & 28 and then start chemo again on day 29 (day 1 of new cycle.) The running joke is now that Rion has a "cycle" and a bad week each month : )
I, however, finally made the time to address some issues I've been having and stopped ignoring them hoping they would just go away. I am doing MUCH better since I went to the doctor last Thursday and got validation that I'm not going crazy but just really, really stressed. I haven't mentioned it much here except for comments in passing but I've been having kinda a rough time lately. I think it's knowing that we're going to be dealing with this for at least another year that just makes me feel worn out mentally. At first I was all gung-ho and energized to do whatever I needed to do to get us through this but the initial motivation has worn off and now I just feel drained and tapped out. I have battled with depression in the past and I decided now was as good a time as any to start back on anti-depressant medication; after all Rion has been on an anti-depressant since he was diagnosed back in November so it makes sense I might benefit as well. I also got a refill on my migraine medication so I won't have to suffer as much when I get one of the horrible headaches I've been plagued with lately.
It's not so much the prescriptions that made me feel better but just talking with the doctor and having her acknowledge that I've take on A LOT lately and it's time to cut myself some slack and quit trying to be a perfectionist- maybe this spring wasn't the best time to start training for a 10K & taking off the few extra pounds I had put on over the winter...instead I ended up totally burnt out on exercise and faced with closer to 10 pounds that have accumulated since November. Enough is enough! Putting my nose to the grindstone and obsessing over every little thing wasn't helping me get anywhere. I am now making a conscious effort to chill out and just focus on my health and staying sane so I can be the best possible care giver for Rion.
Being a caregiver is much harder (and also much more rewarding) that I ever thought it would be. But the saying that you have to take care of yourself first in order to be a good caregiver are definitely words to live by. I've always had trouble with making time for myself because I've always been more of a people pleaser, gaining satisfaction from taking care of others instead of myself. The way I look at it now is that by taking care of myself I am able to take better care of Rion and that keeps the people pleaser side of me happy!
That's all for today- I'll be back after our appointment Thursday to let everyone know how Rion's blood work turned out.
Blessings,
Emily
I, however, finally made the time to address some issues I've been having and stopped ignoring them hoping they would just go away. I am doing MUCH better since I went to the doctor last Thursday and got validation that I'm not going crazy but just really, really stressed. I haven't mentioned it much here except for comments in passing but I've been having kinda a rough time lately. I think it's knowing that we're going to be dealing with this for at least another year that just makes me feel worn out mentally. At first I was all gung-ho and energized to do whatever I needed to do to get us through this but the initial motivation has worn off and now I just feel drained and tapped out. I have battled with depression in the past and I decided now was as good a time as any to start back on anti-depressant medication; after all Rion has been on an anti-depressant since he was diagnosed back in November so it makes sense I might benefit as well. I also got a refill on my migraine medication so I won't have to suffer as much when I get one of the horrible headaches I've been plagued with lately.
It's not so much the prescriptions that made me feel better but just talking with the doctor and having her acknowledge that I've take on A LOT lately and it's time to cut myself some slack and quit trying to be a perfectionist- maybe this spring wasn't the best time to start training for a 10K & taking off the few extra pounds I had put on over the winter...instead I ended up totally burnt out on exercise and faced with closer to 10 pounds that have accumulated since November. Enough is enough! Putting my nose to the grindstone and obsessing over every little thing wasn't helping me get anywhere. I am now making a conscious effort to chill out and just focus on my health and staying sane so I can be the best possible care giver for Rion.
Being a caregiver is much harder (and also much more rewarding) that I ever thought it would be. But the saying that you have to take care of yourself first in order to be a good caregiver are definitely words to live by. I've always had trouble with making time for myself because I've always been more of a people pleaser, gaining satisfaction from taking care of others instead of myself. The way I look at it now is that by taking care of myself I am able to take better care of Rion and that keeps the people pleaser side of me happy!
That's all for today- I'll be back after our appointment Thursday to let everyone know how Rion's blood work turned out.
Blessings,
Emily
Thursday, April 26, 2012
Done with round 1
Last night was Rion's last night of chemo for the 1st (of 12) cycles and it couldn't have come fast enough. The double dosage of chemo definitely has hit him harder than it did before when he was taking the single dose (duh) and undergoing radiation. The fatigue has been almost debilitating at times and it's all Rion can do to listen and follow along in a conversation with me. He is cold all the time- his hands and feet are FREEZING even when it's 80F outside. He looks pale and his eyes are red around the rims. For the first time he truly looks like a cancer patient and it breaks my heart! Last night was the 2nd time he has vomited during or immediately after a meal with zero nausea or warning. One minute he's fine and carrying on conversation while we eat at the table and the next second he's rushing to the bathroom. Each time he has been violently ill to the point that he is shaking and sweating afterwards. We have no clue how to combat this but if it continues to happen when he is off the chemo we will be contacting our oncologist at Duke. Another new side effect he has experienced is a low grade fever in the evenings right before bed time. But it's possible that the fever was caused by him taking a bath and raising his core body temperature. We have been taking his temperature periodically throughout the day and so far he hasn't run a fever at any other time. We are anxiously awaiting his blood work on May 9th to see what this dosage has done to his levels, especially his platelets since they suffered before.
But even with all of this we know that we are blessed beyond measure. Comparing his new MRI (wow, can't believe that was just last week, it seems like so much longer) with the original diagnostic MRI from November reminds us that we were fortunate his tumor was operable and, through the work of God, we were about to get in touch with Duke and arguably the best neurosurgeon in the world. We've come across so many people that are living with inoperable brain tumors or whose surgery wasn't as successful as Rion's, these other brain tumor patients aren't as lucky as us and we always try to keep that in the front of our minds when something goes wrong. Our heart aches for each and every cancer patient who has it worse than us and at times we feel guilty complaining about side effects when it could be so very much worse. I couldn't imagine how horrible it would be if Rion still had to continue working right now, he can barely stay up for more than 5 or 6 hours these days and just doing house work leaves him worn out. I'm confident his treatment wouldn't be going as well if he had to manage the stress and demands of a job on top of his treatment & side effects. WE ARE BLESSED!
So things aren't exactly what we would like for them to be but we are constantly humbled by what others have to go through in their treatment. I am hoping that Rion's side effects will subside now that he isn't taking the chemo each day and that his quality of life will improve some what.
Thank you for your continued prayers and support, it blows my mind that we are still getting get well soon cards and donations in the mail almost every day. It makes me want to fight even harder and do even more to keep on top of all of this and take as much stress off Rion as possible- you guys make me feel empowered and I can't accurately express my gratitude and the extent to which I rely on this to keep going.
God Bless,
Emily & Rion
But even with all of this we know that we are blessed beyond measure. Comparing his new MRI (wow, can't believe that was just last week, it seems like so much longer) with the original diagnostic MRI from November reminds us that we were fortunate his tumor was operable and, through the work of God, we were about to get in touch with Duke and arguably the best neurosurgeon in the world. We've come across so many people that are living with inoperable brain tumors or whose surgery wasn't as successful as Rion's, these other brain tumor patients aren't as lucky as us and we always try to keep that in the front of our minds when something goes wrong. Our heart aches for each and every cancer patient who has it worse than us and at times we feel guilty complaining about side effects when it could be so very much worse. I couldn't imagine how horrible it would be if Rion still had to continue working right now, he can barely stay up for more than 5 or 6 hours these days and just doing house work leaves him worn out. I'm confident his treatment wouldn't be going as well if he had to manage the stress and demands of a job on top of his treatment & side effects. WE ARE BLESSED!
So things aren't exactly what we would like for them to be but we are constantly humbled by what others have to go through in their treatment. I am hoping that Rion's side effects will subside now that he isn't taking the chemo each day and that his quality of life will improve some what.
Thank you for your continued prayers and support, it blows my mind that we are still getting get well soon cards and donations in the mail almost every day. It makes me want to fight even harder and do even more to keep on top of all of this and take as much stress off Rion as possible- you guys make me feel empowered and I can't accurately express my gratitude and the extent to which I rely on this to keep going.
God Bless,
Emily & Rion
Monday, April 23, 2012
a good learning experience
If you're friends with me on Facebook you might have seen my post yesterday morning that Rion wasn't doing so well and we needed prayers for mental & physical strength...I am very happy and relieved to report today that he is doing much, much better. Praise God!
Yesterday was by far the worst day we've had since starting treatment but it was also a good learning experience for us. It's hard sometimes to remember that Rion has limitations even though he may look and act "normal." We are constantly having to re-adjust and re-think our priorities and how we are going to manage our lives for the next year+ while Rion is on treatment. Unfortunately we made a simple mistake of over doing it which left Rion totally zapped of energy which in turn made him more susceptible to the side effects from starting his new chemotherapy dosage on Saturday night. Last week would have been a bear for anyone- going up to Duke an back in 36 hours (725 miles round trip,) going to a cook out Friday night and staying out later than usual, and then staying busy all day Saturday and once again staying out later than we normally do Saturday night. On top of all of that, it stormed at our house Saturday night and neither or us were able to get any quality sleep throughout the entire night. When my alarm went off Sunday morning (we were heading out of down for the day to visit family) Rion's body pretty much said "no way jose!" He was so weak he could barely get up to walk across the house and all he wanted to eat was a smoothie because it was bland and easy to eat. He slept the majority of the day yesterday waking up only to eat 1/2 a bowl of soup for lunch and the other 1/2 a few hours later. He did get up for about 3 hours yesterday evening and ate a really good dinner but was ready to go back to bed almost immediately. He slept soundly last night and woke up this morning looking and acting much more like his old self!
From the looks of it the fatigue is going to be even worse with this regiment than it was during chemo/radiation. I can't describe exactly how debilitating it is because I can't honestly grasp it 100% myself. But I can say that Rion looks and acts like a totally different person when he's feeling so poorly- he moves & talks slower and it's clear that even thinking takes more out of him than it normally would. This is very hard for me to watch, helplessly, because for the last 7 years I've gotten accustomed to Rion's quick thinking, always on the go personality that often made me feel lazy for my lack of energy in comparison to him. (and if you know me, you know I am NOT a very lazy person LOL) It is just in our nature to stay busy all the time and try to pack the most into each and every day. But that has to stop, he (we) have got to learn how to say "no" more and realize that he (we) are not the same as he (we) were even 6 months ago. To us it feels unnatural, we have always packed our evenings and weekends with as much activity as possible because that's what makes us happiest. Or it was what made us happiest. Yesterday's hang over from all of the fun & activity over the last week was a not-so-subtle reminder of this. With all the extra stress I'm having to deal with right now it's clear to me that I also need to start taking more time to just relax and re-group. I have so many balls in the air as it is, I'm starting to feel like I'm going to have a break down if I don't quit taking on so much. It's just hard, because we're having to say no to things we want to do just so we can manage the things that we HAVE to do. But I guess it's just another component of cancer treatment that no one thought to enlighten us about up front- the constant struggle to return to normal but to be ever mindful that normal isn't what it used to be.
Thank you all for your thoughts and prayers yesterday and thank you for your understanding that when we say no to an invitation that it's nothing personal but we're going to have to start being a little more selfish with our time. After the next year is over we'll have the rest of our lives to go and do and see but for now we need to focus on Rion and getting him through this 12 months with as little pain (physically and mentally) as possible. We would also both ask that you respect our decisions that we make in regards to Rion's treatment and what WE think is best for him. We understand that not everyone would choose to do the things we are doing and we were probably just as judgemental and skeptical as anyone before this happened to us. But it hurts, more than anyone knows, when our friends and family question our decisions and imply that we are not doing what is best for Rion. Please keep these opinions to yourself: it is not going to change our minds and will only place more stress on us. We don't make any decisions lightly but through prayer and the advise of our medical teams we are confident that we are doing everything we need to be doing at this time.
God bless,
Emily
Yesterday was by far the worst day we've had since starting treatment but it was also a good learning experience for us. It's hard sometimes to remember that Rion has limitations even though he may look and act "normal." We are constantly having to re-adjust and re-think our priorities and how we are going to manage our lives for the next year+ while Rion is on treatment. Unfortunately we made a simple mistake of over doing it which left Rion totally zapped of energy which in turn made him more susceptible to the side effects from starting his new chemotherapy dosage on Saturday night. Last week would have been a bear for anyone- going up to Duke an back in 36 hours (725 miles round trip,) going to a cook out Friday night and staying out later than usual, and then staying busy all day Saturday and once again staying out later than we normally do Saturday night. On top of all of that, it stormed at our house Saturday night and neither or us were able to get any quality sleep throughout the entire night. When my alarm went off Sunday morning (we were heading out of down for the day to visit family) Rion's body pretty much said "no way jose!" He was so weak he could barely get up to walk across the house and all he wanted to eat was a smoothie because it was bland and easy to eat. He slept the majority of the day yesterday waking up only to eat 1/2 a bowl of soup for lunch and the other 1/2 a few hours later. He did get up for about 3 hours yesterday evening and ate a really good dinner but was ready to go back to bed almost immediately. He slept soundly last night and woke up this morning looking and acting much more like his old self!
From the looks of it the fatigue is going to be even worse with this regiment than it was during chemo/radiation. I can't describe exactly how debilitating it is because I can't honestly grasp it 100% myself. But I can say that Rion looks and acts like a totally different person when he's feeling so poorly- he moves & talks slower and it's clear that even thinking takes more out of him than it normally would. This is very hard for me to watch, helplessly, because for the last 7 years I've gotten accustomed to Rion's quick thinking, always on the go personality that often made me feel lazy for my lack of energy in comparison to him. (and if you know me, you know I am NOT a very lazy person LOL) It is just in our nature to stay busy all the time and try to pack the most into each and every day. But that has to stop, he (we) have got to learn how to say "no" more and realize that he (we) are not the same as he (we) were even 6 months ago. To us it feels unnatural, we have always packed our evenings and weekends with as much activity as possible because that's what makes us happiest. Or it was what made us happiest. Yesterday's hang over from all of the fun & activity over the last week was a not-so-subtle reminder of this. With all the extra stress I'm having to deal with right now it's clear to me that I also need to start taking more time to just relax and re-group. I have so many balls in the air as it is, I'm starting to feel like I'm going to have a break down if I don't quit taking on so much. It's just hard, because we're having to say no to things we want to do just so we can manage the things that we HAVE to do. But I guess it's just another component of cancer treatment that no one thought to enlighten us about up front- the constant struggle to return to normal but to be ever mindful that normal isn't what it used to be.
Thank you all for your thoughts and prayers yesterday and thank you for your understanding that when we say no to an invitation that it's nothing personal but we're going to have to start being a little more selfish with our time. After the next year is over we'll have the rest of our lives to go and do and see but for now we need to focus on Rion and getting him through this 12 months with as little pain (physically and mentally) as possible. We would also both ask that you respect our decisions that we make in regards to Rion's treatment and what WE think is best for him. We understand that not everyone would choose to do the things we are doing and we were probably just as judgemental and skeptical as anyone before this happened to us. But it hurts, more than anyone knows, when our friends and family question our decisions and imply that we are not doing what is best for Rion. Please keep these opinions to yourself: it is not going to change our minds and will only place more stress on us. We don't make any decisions lightly but through prayer and the advise of our medical teams we are confident that we are doing everything we need to be doing at this time.
God bless,
Emily
Friday, April 20, 2012
Duke appointment Tuesday 4/20/12
From this (November 2011):
To This (February 2012)
To this (April 2012)
And this (November 2011)
To this (April 2012)
In a nut shell the 6 weeks of chemo and radiation was a success, Rion is healing still from surgery and almost all of the fluid that was present on his skull right after surgery has been reabsorbed. Since he did so well on the chemo/radiation regiment, the doctors are optimistic that the next round of chemo will go smoothly and we won't have to keep going back to Duke so frequently!! YAY
Here are the nitty gritty details of what's to come:
- the next chemo regiment will be with the same oral chemo drug that he was just taking in combination with the radiation but it will be at a much higher dosage (double to start off with until we make sure his platelets can handle it and then it will probably be increased further.)
- Speaking of platelets- his have rebounded nicely! We had labs done before we left Duke on Wednesday and they called us later that day to say his levels are all great- platelets are at 135 now so he is all set to start chemo ASAP
- We will be starting the chemo this Saturday evening- on the new regiment he will take the oral chemo for 5 days and then stop for 23 days. We will have lab work done on the 3rd & 4th week to make sure his levels are high enough to start the regiment again the following week
- Our next appointment back at Duke is June 27th and as long as the MRI is clear and he is tolerating the chemo then we won't have to go back "for a while." (Not sure exactly how long that is but sounds promising to me.) We will still have to have MRIs done periodically but we will just send the scans up to Duke to review & keep in Rion's file
God has renewed our hope and we continue to be faithful that He will see us through this difficult time. We look forward to Saturday and actively participating in treatment again which brings us one step closer to remission!
God bless,
Emily & Rion
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