Today was Mark's bone marrow biopsy. In about a week or so, we expect to get the results which will hopefully tell us that Mark is in remission. Mark was really anxious about the biopsy because the first two were really painful. Actually, while we were waiting, the lady getting a biospy in the next room started screaming bloody murder. It was terrible. The nurse was even shaken up by the woman's reaction. Thankfully, Mark's biopsy went much better. The nurse (same nurse that the neighboring lady had) was excellent. The biopsy went really quickly (about 10 minutes) and Mark did not seem in near as much pain as the other two biopsies. Don't get me wrong, it was still very painful, but Mark was able to take deep breaths and manage the pain well. It also helped that the nurse was able to the bone and marrow samples they needed very quickly. So, please pray that the results show Mark is in remission and pray that the next round of treatment goes smoothly and without complications.
On a happier note, Brodie turned 3 on Monday June 27th. We celebrated his actual birthday by taking him to see Cars 2 in the movie theater. This was technically his 2nd movie in a theater (when he was one month we took him to see Wall-E - he slept in his baby carrier the whole time). This time he sat in his daddy's lap, then his GG's lap, then stood up. He cheered and laughed - it was adorable. At one point, he walked up to me and said "I love you mommy" and gave me a kiss. I love that boy.
We had his birthday party on Saturday - it was Lightning McQueen themed. He had so much fun. Friends and family together, laughing, cupcakes, and presents. Brodie got some light up Lightning McQueen shoes that he may take off his feet one day, remote control cars, clothes, books, sidewalk chalk (which he begs to play with daily), and lots of other stuff. At one point someone said "who gave you that present" and Brodie in his precious innocence said "Santa Claus" - see why I love him so much. When it was time to sing happy birthday, Brodie sang right along with us; it was hilarious. Then he went outside with Kaitlyn (my friend's 3 year old) and the two of them played in the little swimming pool for a long time. He had so much fun. Thankfully, he exhausted himself and slept for about 3 hours or so. He slept so hard that I was able to take him out of his car seat, carried him into the Varsity, ate lunch with Mark and our friends, put him back in the car seat and drove home without him waking up once.
So, long story short. Life is actually pretty awesome right now. We are blessed in more ways than we can count. I am getting lots of quality time with my family and learning daily to count it all as blessings and appreciate it all (though sometimes it gets hard to remember that part). There is always anxiety about the present and the future, but I know God will see us through it all. I appreciate all the thoughts, prayers, love and support each of you have given throughout this process. Please keep them coming.
With a thankful heart,
Amanda
Wednesday, June 29, 2011
Thursday, June 16, 2011
A Glance at What's Next
Well, we are back home (actually went home Tuesday). The doctor thinks Mark caught a virus that ran its course, they never actually identified anything particular. We basically hung out at the hospital for 3 days watching Turner Classis Movies and waiting to go home. Mark feels perfectly fine now and has not had any problems since leaving the hospital. We went to the doctor today for his weekly blood levels check and everything looks great. We don't have to return again until Tuesday, so we are taking a couple days to hang out while Brodie visits Grandma Crawford.
The doctor did give us a quick overview of Mark's upcoming treatment. Basically, Mark finishes his ATRA on Friday June 24th. A few days later they will do a bone marrow biopsy to Mark is in remission. That result will take a couple of days. Once the remission is confirmed, Mark will begin the consolidation phase of his treatment. The pharmacists overview basically told us that Mark will get another round of 2 chemo medicines over about 2 weeks, then he will take a week off. After the week off, Mark will start getting arsenic 5 days a week for 6 weeks. Once he finishes the arsenic, he will begin the maintanence phase. The maintanence phase means Mark will take ATRA for 2 weeks, every 3 months over 2 years.
We are pretty excited to have at least an idea what is in store for us next with Mark's treatment. Thankfully, I am out of work until the first of August, so I will be able to take Mark to his chemo treatments and possibly the first week of arsenic. My current prayer is for help getting him to his daily appointments for arsenic. The pharmacist said the treatment can be all outpatient as long as Mark stays well AND we are able to get him to every appointment. Once I have a detailed schedule, I will start figuring out a schedule and know for sure what dates I will need help getting Mark to appointments.
Continue to pray for Mark's health and avoiding any further infections. Also, pray for continued comfort and strength as we continue this adventure and take further steps towards Mark's being cured of cancer.
With a thankful heart,
Amanda
The doctor did give us a quick overview of Mark's upcoming treatment. Basically, Mark finishes his ATRA on Friday June 24th. A few days later they will do a bone marrow biopsy to Mark is in remission. That result will take a couple of days. Once the remission is confirmed, Mark will begin the consolidation phase of his treatment. The pharmacists overview basically told us that Mark will get another round of 2 chemo medicines over about 2 weeks, then he will take a week off. After the week off, Mark will start getting arsenic 5 days a week for 6 weeks. Once he finishes the arsenic, he will begin the maintanence phase. The maintanence phase means Mark will take ATRA for 2 weeks, every 3 months over 2 years.
We are pretty excited to have at least an idea what is in store for us next with Mark's treatment. Thankfully, I am out of work until the first of August, so I will be able to take Mark to his chemo treatments and possibly the first week of arsenic. My current prayer is for help getting him to his daily appointments for arsenic. The pharmacist said the treatment can be all outpatient as long as Mark stays well AND we are able to get him to every appointment. Once I have a detailed schedule, I will start figuring out a schedule and know for sure what dates I will need help getting Mark to appointments.
Continue to pray for Mark's health and avoiding any further infections. Also, pray for continued comfort and strength as we continue this adventure and take further steps towards Mark's being cured of cancer.
With a thankful heart,
Amanda
Sunday, June 12, 2011
Small setbacks, but Thankful for God's Blessings
Good morning all,
I know it has been a little too long since I last posted about our life, sorry. Since I last posted, Mark did have two bad days. Basically on Memorial Day and then one day later in the week, Mark experienced a lot of chest pain, anxiety, headaches, and overall grudiness. The first believed culprit is Mark finished taking his steroid. The steroid was minimizing the side effects of the ATRA medication Mark is taking. The doctors put him on steroids after his respiratory distress in May, but they wanted him to stop because the side effects of taking a steroid too long are also not good. Basically, that Monday night, Mark called the doctor who allowed him to take another steroid pill to ease the pain until his appointment the next morning. It took several hours, but it did help. The next day, we went to the doctor and after an EKG and Echo confirmed Mark still has pericarditis (probably not spelled correctly), basically inflammation of the sac around his heart causing chest pain, shortness of breath, etc. The cardiologist decided not to continue the steriod because Mark's heart is very healthy, it is simply reacting to the ATRA.
So, a couple days later Mark started to have the same side effects again. At this point, the doctors tested his blood levels because of a new medication he was taking called V Fend. This is an anti-fungal. Turns out a very rare side effect of V Fend when taking ATRA is V Fend will heighten the side effects of ATRA. Basically, Mark's body was reacting like it was overdosing on ATRA, therefore causing the extreme chest pain, headache, and shortness of breath. Well now, Mark has been doing well for several days and on Friday we were told Mark no longer has to take IV meds so he does not have to return to the hospital until Thursday (that's 6 whole days).
Well needless to say, we were very excited about our break from the doctor. Unfortunately, Saturday morning Mark woke up with a headache and sore throat. He pretty much slept all day and when he was not sleeping, he sat in his recliner. When I was putting Brodie in bed, he gave Mark a kiss on the cheek and said "daddy's face is hot". I immediately became concerned, so I put Brodie in bed and took Mark's temperature - 101.2 degrees. Doctors orders are to call if it is over 100.5 because that is a sign of an infection. Though Mark did not want to, I made him call the on-call number. It took a little while for the doctor to call back, but when he did he told Mark to head to the BMT Unit at Northside so they can find out what is going on and treat it. So, here I am sitting in Northside hospital BMT Unit room 442. The nurse took a bunch of Mark's blood to test for every infection you can think of, the doctor ordered an x-ray since Mark has had continual problems in his lungs (pneumonia is what started all this in case anyone forgot), and they will start him on two IV antibiotics just to try and get whatever is causing the fever. Basically, we know absolutely nothing right now, but I will let everyone know as soon as we know something.
To give everyone some comfort for now, Mark looks great. The nurse even commented on how much better he looks than when he was discharged. He feels great, except the headache and sore throat. His fever has actually dropped to about 99 degrees since we got here. I feel very confident he will be fine and the fantastic doctors and nurses here will take great care of him and knock out the problem (hopefully very soon - though it is nice seeing the nurses again, I would rather be home). For those wondering about Brodie; Mark's mom met us at the hospital and took him to her house. It worked out well because we were planning to go to her house Sunday night anyway (Mark still plans to be there - such a glass half full kind of guy).
So, definitely pray that whatever is going on with Mark is taken care of quickly without any problems. Pray for peace and comfort to Mark, Brodie, myself, and all our family and friends who may feel discouraged or at the very least concern at our return to the hospital.
On a happier note, Friday I was getting worried about finances (Mark's pay is 65% right now due to Short Term Disability - PTL for Short Term though). I kept running all sorts of options around in my head. When Mark and I returned home from the hospital I checked the mail, and there was a check for $184 from United Healthcare. I don't know why we got it, but I don't care. Now, $184 is not going to fix our financial concerns, but it is still an amazing blessing. Isn't it absolutely amazing how God uses simple things and perfect timing to bless us. Thank you Lord for the small blessings in our lives.
With a thankful heart,
Amanda
I know it has been a little too long since I last posted about our life, sorry. Since I last posted, Mark did have two bad days. Basically on Memorial Day and then one day later in the week, Mark experienced a lot of chest pain, anxiety, headaches, and overall grudiness. The first believed culprit is Mark finished taking his steroid. The steroid was minimizing the side effects of the ATRA medication Mark is taking. The doctors put him on steroids after his respiratory distress in May, but they wanted him to stop because the side effects of taking a steroid too long are also not good. Basically, that Monday night, Mark called the doctor who allowed him to take another steroid pill to ease the pain until his appointment the next morning. It took several hours, but it did help. The next day, we went to the doctor and after an EKG and Echo confirmed Mark still has pericarditis (probably not spelled correctly), basically inflammation of the sac around his heart causing chest pain, shortness of breath, etc. The cardiologist decided not to continue the steriod because Mark's heart is very healthy, it is simply reacting to the ATRA.
So, a couple days later Mark started to have the same side effects again. At this point, the doctors tested his blood levels because of a new medication he was taking called V Fend. This is an anti-fungal. Turns out a very rare side effect of V Fend when taking ATRA is V Fend will heighten the side effects of ATRA. Basically, Mark's body was reacting like it was overdosing on ATRA, therefore causing the extreme chest pain, headache, and shortness of breath. Well now, Mark has been doing well for several days and on Friday we were told Mark no longer has to take IV meds so he does not have to return to the hospital until Thursday (that's 6 whole days).
Well needless to say, we were very excited about our break from the doctor. Unfortunately, Saturday morning Mark woke up with a headache and sore throat. He pretty much slept all day and when he was not sleeping, he sat in his recliner. When I was putting Brodie in bed, he gave Mark a kiss on the cheek and said "daddy's face is hot". I immediately became concerned, so I put Brodie in bed and took Mark's temperature - 101.2 degrees. Doctors orders are to call if it is over 100.5 because that is a sign of an infection. Though Mark did not want to, I made him call the on-call number. It took a little while for the doctor to call back, but when he did he told Mark to head to the BMT Unit at Northside so they can find out what is going on and treat it. So, here I am sitting in Northside hospital BMT Unit room 442. The nurse took a bunch of Mark's blood to test for every infection you can think of, the doctor ordered an x-ray since Mark has had continual problems in his lungs (pneumonia is what started all this in case anyone forgot), and they will start him on two IV antibiotics just to try and get whatever is causing the fever. Basically, we know absolutely nothing right now, but I will let everyone know as soon as we know something.
To give everyone some comfort for now, Mark looks great. The nurse even commented on how much better he looks than when he was discharged. He feels great, except the headache and sore throat. His fever has actually dropped to about 99 degrees since we got here. I feel very confident he will be fine and the fantastic doctors and nurses here will take great care of him and knock out the problem (hopefully very soon - though it is nice seeing the nurses again, I would rather be home). For those wondering about Brodie; Mark's mom met us at the hospital and took him to her house. It worked out well because we were planning to go to her house Sunday night anyway (Mark still plans to be there - such a glass half full kind of guy).
So, definitely pray that whatever is going on with Mark is taken care of quickly without any problems. Pray for peace and comfort to Mark, Brodie, myself, and all our family and friends who may feel discouraged or at the very least concern at our return to the hospital.
On a happier note, Friday I was getting worried about finances (Mark's pay is 65% right now due to Short Term Disability - PTL for Short Term though). I kept running all sorts of options around in my head. When Mark and I returned home from the hospital I checked the mail, and there was a check for $184 from United Healthcare. I don't know why we got it, but I don't care. Now, $184 is not going to fix our financial concerns, but it is still an amazing blessing. Isn't it absolutely amazing how God uses simple things and perfect timing to bless us. Thank you Lord for the small blessings in our lives.
With a thankful heart,
Amanda
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