I am writing this blog from the BMT unit of Northside hospital. Mark was admitted last night because he had a fever of 102.7 degrees. One good thing is Mark's white cell count is still between 7 and 8, so they were not too worried about infection, but still better safe than sorry. By the time we arrived at the hospital, Mark's temp dropped to 100.4 degrees and this morning it was back down to 97 degrees. The doctor said they think Mark's fever was a reaction to the antifungal medication they started giving him Monday. So now they are discontinuing that specific medication and he will start a different antifungal on Monday when he starts his arsenic treatment. Thankfully, Mark feels like a new person today. His color looks better, he isn't as nauseas, and he is fever free.
The rest of the week went pretty well. Mark's treatment quickly became routine. We show up at the BMT Clinic after a morning of nausea and vomiting, they give Mark nausea medication, start fluids, give him pre-meds and antifungal, and then do whatever chemo is necessary. Thankfully, Mark is done with the chemo part of the consolidation phase. He finished daunorubicin on Wednesday and they unhooked his IV pump of cytarabine on Thursday.
The week did become difficult on Thursday when Mark starting feeling sick and vomiting. he felt miserable and I could not do anything to help except try to make him take his medicine. Again, thankfully he feels better today, though he is still feeling nauseas. At least he finally ate a little today at breakfast (first food he has eaten since about 10:00 Thursday night). Now we are simply sitting in the hospital waiting for them to discharge him. The doctor said he should be able to leave this afternoon, but they are struggling to get his potassium level to normal. After two bags of potassium, it is still low so we are waiting to hear back from the pharmacist about what they want to do next.
So, continue to pray for Mark's side effects to subside so he can make it through the next few weeks as comfortably as possible; pray they are able to get his potassium normalized; and pray we can go home today.
With a thankful heart,
Amanda
Saturday, July 23, 2011
Tuesday, July 19, 2011
A colorful couple of days
These three days are colorful days. Mark is taking one bright yellow IV medication and one bright orange medication, which very quickly turns his urine peach. We knew to expect it, but he said it is still pretty funny.
Mark started his consolidation treatment yesterday. It was a long day that started with us meeting Mark's mom late Sunday evening to give her Brodie because Brodie was throwing up. That's right folks, the day before Mark starts chemo, Brodie starts throwing up. Thankfully, GG (Mark's mom) was able to get him, and he did not get sick any on Monday. At 8:45 am on Monday, Mark and I got to Northside to begin the next phase. The first three days of his consolidation phase he receives 2 different chemo drugs. As soon as we get into the clinic and they draw blood for his lab work, Mark gets a bag of fluids which take about an hour. While he is getting the fluids, the nurse gives him his pre-meds, which help lessen or avoid some side effects of the chemo. His pre-meds are simply benedryl (knocks him out cold), tylenol, and a nausea medication. He also has to put steroid eye drops in his eyes 4 times a day for this entire week to try and avoid eye irritation that can be caused by one of the chemo drugs. After the pre-meds and the fluids, Mark gets an anti-fungal to continue treating a fungal pneumonia-like thing in his lung (he has had this for a few months now). Then the first chemo, daunorubicin, which only takes about 15 minutes. Then just before we leave, they hook Mark up to an IV pump that he has to wear constantly until we come in Thursday morning. The pump dispenses the second chemo, cytarabine, continuously for 24 hours. Then we go home. The first day we arrived at 8:45 and left just after 1:00 (the pharmacist did have to consult with us before he could start the treatment, so hopefully today won't take as long). We are doing the same exact treatment today and again tomorrow.
We have to mone into the hospital Thursday, Friday, Saturday, and Sunday to get the anti-fungal IV medication (which is bright yellow) and some lab work but that is all until Monday. Monday Mark starts his treatment of arsenic trioxide, which he will get Monday through Friday until August 26th.
So, now a little information about the chemo drugs for those of you interested.
1. Daunorubicin - bright orange drug given to Mark using his PICC line.
- Takes about 15 minutes.
- Common side effects are:
- decreased blood count (makes Mark susceptible to infection and difficult to clot his blood)
- nausea and vomiting (we have meds to help with this, so we will see how bad it gets)
- temporary hair loss (funny thing is the hair he lost before is growing back baby soft and blond, so who knows what he will look like in a couple of months)
- Less common side effects:
- can cause heart damage if taken too long or too much so the doctors are constantly checking his levels and he gets two EKGs a week.
***Mark did not have any problems with this medicine last time, just normal nausea, vomiting, minor hair loss, and decreased blood count.***
2. Cytarabine - boring clear IV drug dispensed using an IV pump in a bag over 24 hours.
- Common side effects are:
- decreased blood count
- nausea and vomiting
- Less common side effects:
- elevated liver enzymes (they monitor these daily)
- change in coordination (they monitor daily)
- pink eye (he is using eye drops to prevent this problem).
3. Arsenic trioxide - clear IV medication
- Gets Monday through Friday from July 25 - August 26
- Common side effects:
- increased white blood cells
- changes in heart rhythm (monitoring with EKG twice a week)
- fever, fatigue, headache (we have meds for these)
- nausea/vomiting (we have meds for these)
- changes in electrolytes (monitor daily and give him electrolytes as needed)
- Less common side effects
- Muscle pain/weakness
- Confusion, tiredness
- Increased liver enzymes (monitored daily)
So that is the treatment plan for the next 6 weeks. Today Mark has had a little nausea and he is currently sound asleep (the benedryl knocks him out). His potassium is a little low, so they are giving him 2 IV bags of potassium (2 hours per bag) in addition to everything else, so I am just going to get comfortable and try to get some homework done.
Pray for Mark to stay well during this time and avoid any infections.
Pray if Mark must have side effects, they are minor and easily managable.
Pray for God to send us those with a servant heart, willing to transport Mark to and from the hospital for his treatment when I have to return to work on August 2nd.
Anyone wanting to provide some transportation or bring meals to our home, feel free to call, text, or email me
678-975-4954
kashepherd1@gmail.com
With a thankful heart,
Amanda
Mark started his consolidation treatment yesterday. It was a long day that started with us meeting Mark's mom late Sunday evening to give her Brodie because Brodie was throwing up. That's right folks, the day before Mark starts chemo, Brodie starts throwing up. Thankfully, GG (Mark's mom) was able to get him, and he did not get sick any on Monday. At 8:45 am on Monday, Mark and I got to Northside to begin the next phase. The first three days of his consolidation phase he receives 2 different chemo drugs. As soon as we get into the clinic and they draw blood for his lab work, Mark gets a bag of fluids which take about an hour. While he is getting the fluids, the nurse gives him his pre-meds, which help lessen or avoid some side effects of the chemo. His pre-meds are simply benedryl (knocks him out cold), tylenol, and a nausea medication. He also has to put steroid eye drops in his eyes 4 times a day for this entire week to try and avoid eye irritation that can be caused by one of the chemo drugs. After the pre-meds and the fluids, Mark gets an anti-fungal to continue treating a fungal pneumonia-like thing in his lung (he has had this for a few months now). Then the first chemo, daunorubicin, which only takes about 15 minutes. Then just before we leave, they hook Mark up to an IV pump that he has to wear constantly until we come in Thursday morning. The pump dispenses the second chemo, cytarabine, continuously for 24 hours. Then we go home. The first day we arrived at 8:45 and left just after 1:00 (the pharmacist did have to consult with us before he could start the treatment, so hopefully today won't take as long). We are doing the same exact treatment today and again tomorrow.
We have to mone into the hospital Thursday, Friday, Saturday, and Sunday to get the anti-fungal IV medication (which is bright yellow) and some lab work but that is all until Monday. Monday Mark starts his treatment of arsenic trioxide, which he will get Monday through Friday until August 26th.
So, now a little information about the chemo drugs for those of you interested.
1. Daunorubicin - bright orange drug given to Mark using his PICC line.
- Takes about 15 minutes.
- Common side effects are:
- decreased blood count (makes Mark susceptible to infection and difficult to clot his blood)
- nausea and vomiting (we have meds to help with this, so we will see how bad it gets)
- temporary hair loss (funny thing is the hair he lost before is growing back baby soft and blond, so who knows what he will look like in a couple of months)
- Less common side effects:
- can cause heart damage if taken too long or too much so the doctors are constantly checking his levels and he gets two EKGs a week.
***Mark did not have any problems with this medicine last time, just normal nausea, vomiting, minor hair loss, and decreased blood count.***
2. Cytarabine - boring clear IV drug dispensed using an IV pump in a bag over 24 hours.
- Common side effects are:
- decreased blood count
- nausea and vomiting
- Less common side effects:
- elevated liver enzymes (they monitor these daily)
- change in coordination (they monitor daily)
- pink eye (he is using eye drops to prevent this problem).
3. Arsenic trioxide - clear IV medication
- Gets Monday through Friday from July 25 - August 26
- Common side effects:
- increased white blood cells
- changes in heart rhythm (monitoring with EKG twice a week)
- fever, fatigue, headache (we have meds for these)
- nausea/vomiting (we have meds for these)
- changes in electrolytes (monitor daily and give him electrolytes as needed)
- Less common side effects
- Muscle pain/weakness
- Confusion, tiredness
- Increased liver enzymes (monitored daily)
So that is the treatment plan for the next 6 weeks. Today Mark has had a little nausea and he is currently sound asleep (the benedryl knocks him out). His potassium is a little low, so they are giving him 2 IV bags of potassium (2 hours per bag) in addition to everything else, so I am just going to get comfortable and try to get some homework done.
Pray for Mark to stay well during this time and avoid any infections.
Pray if Mark must have side effects, they are minor and easily managable.
Pray for God to send us those with a servant heart, willing to transport Mark to and from the hospital for his treatment when I have to return to work on August 2nd.
Anyone wanting to provide some transportation or bring meals to our home, feel free to call, text, or email me
678-975-4954
kashepherd1@gmail.com
With a thankful heart,
Amanda
Monday, July 11, 2011
Remission!!!
I have waited 77 days to say this "Mark is in remission!!!". It feels as good as I hoped it would feel. So what does 'remission' mean? First of all, Dr. Soloman, the oncologist, said Mark is in complete remission meaning they did not see any leukemic cells in all of the extensive tests they ran on Mark bone marrow. This is wonderful news. Now that we have finished the induction phase and reached remission, Mark begins the consolidation phase. Basically, the consolidation phase means more treatment to completely kill off any stray leukemic cells that they could not find. This phase is a critical part. I have read lots of research that shows many patients who skip the consolidation and maintenance phase (that's the last phase) have a relapse that could have been prevented. So consolidation greatly increases the chances of our ultimate goal "permanent remission" which in my mind equals "cure".
So, what is in store for Mark during the consolidation phase. First of all, as long as Mark stays well and has transportation to the hospital each day, the whole phase can be outpatient. YAY!!! Secondly, Mark will go in a couple days to get a new PICC line (they took the other one out about a month ago just in case it caused the infection that made him sick in June). Just like the induction phase, the PICC will be used to give Mark all his IV medications and take any blood tests that are needed, so he does not have to get jabbed every time. Probably the first of next week, Mark will get 3 days of chemotherapy. The two chemo drugs are daunorubicin (this is the same chemo he had in the induction phase) and cytarabine. After the 3 days of chemo, he will get a few days off from treatment (but good chance we will still have to go to the hospital daily to have lab work done.
After a short break (just a few days), Mark will go in 5 days a week (Monday thru Friday most likely) for a daily dose of arsenic trioxide. He will continue the arsenic treatment for 6 weeks. Once he completes the arsenic treatments, the doctors will evaluate how he is doing and it is likely he will be approved to drive and return to work. He was really excited to hear that he might be able to return to work in about 2 months, seriously really excited. This will be the end of the consolidation phase. At that point, Mark enters the maintenance phase, where he will take the same ATRA pills he just finished taking. This time he will take the pills for 2 weeks, every 3 months, for 2 years. That sounds easy after overcoming the induction and consolidation phases.
So, obviously we are all ecstatic to know that Mark is in remission. He is responding to all the treatment exactly how the doctors want him to respond. The upcoming chemo treatment will drop Mark's cell counts back to zero. This means he will be neutropenic again and extremely susceptible to infection. Hopefully, any side effects can be easily managed and infections avoided so Mark can stay at home during the treatment. He will also have probably daily trips to the BMT clinic at Northside for lab work and to receive any medications or blood products he needs - since his cell counts will drop, it is pretty much guaranteed that he will need some blood products such as red blood cells and platelets.
At this point, I am just grateful for the blessing of remission and ready to take on the consolidation phase. I again thank each of you for your love, support, and prayers throughout this journey. Please continue to pray for Mark's health. It is so important that his body copes well with the treatment. We pray to stay outpatient, which means he has to avoid germs (good luck with a 3 year old and an educator in the house, but we will certainly try). Pray for continued remission and eventually permanent remission. Pray for strength and courage for our entire family to face the coming challenges with the same tenacity we faced the first challenges. It is important to remember that all is for God's glory, and I am so thankful to Him for all the blessings in my life.
With a thankful heart,
Amanda
So, what is in store for Mark during the consolidation phase. First of all, as long as Mark stays well and has transportation to the hospital each day, the whole phase can be outpatient. YAY!!! Secondly, Mark will go in a couple days to get a new PICC line (they took the other one out about a month ago just in case it caused the infection that made him sick in June). Just like the induction phase, the PICC will be used to give Mark all his IV medications and take any blood tests that are needed, so he does not have to get jabbed every time. Probably the first of next week, Mark will get 3 days of chemotherapy. The two chemo drugs are daunorubicin (this is the same chemo he had in the induction phase) and cytarabine. After the 3 days of chemo, he will get a few days off from treatment (but good chance we will still have to go to the hospital daily to have lab work done.
After a short break (just a few days), Mark will go in 5 days a week (Monday thru Friday most likely) for a daily dose of arsenic trioxide. He will continue the arsenic treatment for 6 weeks. Once he completes the arsenic treatments, the doctors will evaluate how he is doing and it is likely he will be approved to drive and return to work. He was really excited to hear that he might be able to return to work in about 2 months, seriously really excited. This will be the end of the consolidation phase. At that point, Mark enters the maintenance phase, where he will take the same ATRA pills he just finished taking. This time he will take the pills for 2 weeks, every 3 months, for 2 years. That sounds easy after overcoming the induction and consolidation phases.
So, obviously we are all ecstatic to know that Mark is in remission. He is responding to all the treatment exactly how the doctors want him to respond. The upcoming chemo treatment will drop Mark's cell counts back to zero. This means he will be neutropenic again and extremely susceptible to infection. Hopefully, any side effects can be easily managed and infections avoided so Mark can stay at home during the treatment. He will also have probably daily trips to the BMT clinic at Northside for lab work and to receive any medications or blood products he needs - since his cell counts will drop, it is pretty much guaranteed that he will need some blood products such as red blood cells and platelets.
At this point, I am just grateful for the blessing of remission and ready to take on the consolidation phase. I again thank each of you for your love, support, and prayers throughout this journey. Please continue to pray for Mark's health. It is so important that his body copes well with the treatment. We pray to stay outpatient, which means he has to avoid germs (good luck with a 3 year old and an educator in the house, but we will certainly try). Pray for continued remission and eventually permanent remission. Pray for strength and courage for our entire family to face the coming challenges with the same tenacity we faced the first challenges. It is important to remember that all is for God's glory, and I am so thankful to Him for all the blessings in my life.
With a thankful heart,
Amanda
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