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
Friday, May 27, 2011
Our family is blessed
Sorry for the delay in blogging. Needless to say, the last week and a half have been extremely hectic and rather overwhelming to be completely honest. So here is the recap...
First of all, Mark was released to go home on Monday May 16th at about 2:00. We got all checked out, picked up his medication (about 23 or so pills a day), and headed home. Very scary and very surreal. Mark celebrated by watching a movie and relaxing at home. We did not bring Brodie home immediately though. We knew we would need a little time to adjust to our new life at home. Plus Mark is tired and needs to rest which is practically impossible with a almost 3 year old. So Tuesday, Wednesday, and Thursday, my granny took Mark to Northside hospital each day for outpatient services. He had to go back everyday to get an IV antibiotic and antifungal through his PICC line. Takes about an hour, then he comes back.
On Friday, Mark's co-worker, Josh took Mark to the doctor for his IV meds and a CT scan. The CT scan showed a little something in his lungs, so they discontinued the IV antibiotic, and started him with only the IV antifungal. Best part is since he only has to get one IV medicine, he only has to go in every other day. Basically, he went in on Friday to get Friday's dose. Then they attached Saturday's dose to a portable pump, which he has to carry with him all day. The medicine is released first thing in the morning and then I unhook him, sterilize and flush the IV lead, and we continue through the day as normal.
As far as symptoms and side effects, Mark feels great. He has less energy than normal Mark, and he is having really bad night sweats, but other than that no problems at all. Praise God for that, and please let it continue.
On Wednesday, I picked Brodie up from his school and brought him home. It was the first time all three of us were home at the same time since the morning of Friday April 15th. It was a great feeling, and Brodie was so excited. He missed his toys, clothes, bedroom, bed, mommy, and daddy. Unfortunately, I developed a fever of about 101 on Wednesday evening and spent the rest of the night with a mask hoping to not get Mark or Brodie sick. I felt absolutely terrible to the point I could hardly move. Plus poor Mark could not play with Brodie, so they first night home was a bit of a bummer, but still great for us to all be together.
Thursday I woke up feeling even worse, called in to work, took Brodie to school, came home and slept. Finally got a dr appt at 4:30 to discover I had strep throat. So not fun. Good thing is, Mark's cell count is so high, he is at practically no risk of catching it. We also sent Brodie to stay with my mom so he would not get sick and I could rest. I hated doing that since he just got home, but I really had no other choice. Thankfully over the course of the next couple of days, I started to feel better, Mark's energy continued to improve, and our little family reunited again. Actually, Mark's mom brought us some food on Saturday and we planned for Brodie to spend the night with her so I could take Mark to his dr appt, but Brodie refused to leave the house without Mark and I. How cute is that??? He said he wanted to stay at his house with his mommy and daddy, but his GG could stay at his house. Well, all of us ended up staying at GG's house which worked out well cause she kept Brodie during Mark's appt and we were much closer to the hospital.
So, why the huge gap since my last post. Well, it turns out it is A LOT of work to care for a husband recovering from leukemia, an almost 3 year old, keep up with school and work, all while having strep throat. Mark has done nothing but eat since he got out of the hospital, so I am constantly going to the store to get him food (especially donuts and hostess cupcakes). I am working every day, and keeping up with Brodie each night. Plus, my class for my doctorate degree was finishing up, which required a 10 - 20 page paper. I am exhausted again just from saying it all.
I know I could not have managed all of it without the love and support from so many family and friends. My friends Jamie and Hollie paid to have my house cleaned so Mark is in a clean environment (thank you ladies again for such a tremendous blessing), several people have brought us food (thanks Julie, Anne, Allie, Meghan, and Betty). It is so nice not to have to worry about dinner each night. Several people from our church our maintaining our yardwork since Mark can't and I must admit, our yard has not looked this good since Mark's dad was maintaining it.
So, the latest updates. Mark had an appt today to get his medicine and another CT scan. He now does not have to go in for medicine. We don't have to go back til TUESDAY!!! That's right and they will check his blood to make sure he is still going good. If he is, we go home; if he needs something, we get it before he leaves. As long as he stays well, we will only have to go back once or twice a week. Mark has lost a lot of weight (about 20 pounds). Thankfully, he actually needed to lose some weight, so he actually looks really good and down 2 pant sizes. His hair is starting to come out. He is really upset about it. It is not really noticeable, his hair is just thinner than usual. If you talk to him, please don't say anything, let him bring it up if he wants to. He is upset and it is a tramatic experience for him. Mark is also starting to slowly come off some of his medicine. He just finished one antibiotic, finishes his steroid tomorrow, and no longer has to take the 3 pills a day for the nerve pain in his feet that he had in the hospital because the pain has stopped for about 2 weeks.
So, we are doing really well. Still tired and adjusting, but good. We go to the doctor as needed, Mark takes his meds everyday like a good little boy, spend time with our sweet little boy (who is completely daytime potty trained, sure wish we could get him to put on a night time diaper so he doesn't wake up soaked each morning), my class is over (start another one in about a week), work is out for the summer, and just gonna spend time and appreciate life for a while. Also, we are supposed to find out if Mark is in remission at the end of June; then we will find out the game plan for the future.
Again, we appreciate all your prayers, love, and support. This experience has taught me a lot. It has brought Mark and I even closer to each other and closer to God. God is the only thing getting us through this, and he deserves all the praise and glory.
We appreciate any sort of help folks want to offer, especially meals because it is one less thing to have to worry about each day. Feel free to leave me a comment on this blog, email me (kashepherd1@gmail.com) or call or text me 678-975-4954 if you wondering how you can help us over the next several months. Also, if you want to mail cards our home address is
1252 Clearwater Drive
Winder, GA 30680
Thank you all for everything. I promise to do better at updating the blog. With love and a thankful heart,
Amanda
First of all, Mark was released to go home on Monday May 16th at about 2:00. We got all checked out, picked up his medication (about 23 or so pills a day), and headed home. Very scary and very surreal. Mark celebrated by watching a movie and relaxing at home. We did not bring Brodie home immediately though. We knew we would need a little time to adjust to our new life at home. Plus Mark is tired and needs to rest which is practically impossible with a almost 3 year old. So Tuesday, Wednesday, and Thursday, my granny took Mark to Northside hospital each day for outpatient services. He had to go back everyday to get an IV antibiotic and antifungal through his PICC line. Takes about an hour, then he comes back.
On Friday, Mark's co-worker, Josh took Mark to the doctor for his IV meds and a CT scan. The CT scan showed a little something in his lungs, so they discontinued the IV antibiotic, and started him with only the IV antifungal. Best part is since he only has to get one IV medicine, he only has to go in every other day. Basically, he went in on Friday to get Friday's dose. Then they attached Saturday's dose to a portable pump, which he has to carry with him all day. The medicine is released first thing in the morning and then I unhook him, sterilize and flush the IV lead, and we continue through the day as normal.
As far as symptoms and side effects, Mark feels great. He has less energy than normal Mark, and he is having really bad night sweats, but other than that no problems at all. Praise God for that, and please let it continue.
On Wednesday, I picked Brodie up from his school and brought him home. It was the first time all three of us were home at the same time since the morning of Friday April 15th. It was a great feeling, and Brodie was so excited. He missed his toys, clothes, bedroom, bed, mommy, and daddy. Unfortunately, I developed a fever of about 101 on Wednesday evening and spent the rest of the night with a mask hoping to not get Mark or Brodie sick. I felt absolutely terrible to the point I could hardly move. Plus poor Mark could not play with Brodie, so they first night home was a bit of a bummer, but still great for us to all be together.
Thursday I woke up feeling even worse, called in to work, took Brodie to school, came home and slept. Finally got a dr appt at 4:30 to discover I had strep throat. So not fun. Good thing is, Mark's cell count is so high, he is at practically no risk of catching it. We also sent Brodie to stay with my mom so he would not get sick and I could rest. I hated doing that since he just got home, but I really had no other choice. Thankfully over the course of the next couple of days, I started to feel better, Mark's energy continued to improve, and our little family reunited again. Actually, Mark's mom brought us some food on Saturday and we planned for Brodie to spend the night with her so I could take Mark to his dr appt, but Brodie refused to leave the house without Mark and I. How cute is that??? He said he wanted to stay at his house with his mommy and daddy, but his GG could stay at his house. Well, all of us ended up staying at GG's house which worked out well cause she kept Brodie during Mark's appt and we were much closer to the hospital.
So, why the huge gap since my last post. Well, it turns out it is A LOT of work to care for a husband recovering from leukemia, an almost 3 year old, keep up with school and work, all while having strep throat. Mark has done nothing but eat since he got out of the hospital, so I am constantly going to the store to get him food (especially donuts and hostess cupcakes). I am working every day, and keeping up with Brodie each night. Plus, my class for my doctorate degree was finishing up, which required a 10 - 20 page paper. I am exhausted again just from saying it all.
I know I could not have managed all of it without the love and support from so many family and friends. My friends Jamie and Hollie paid to have my house cleaned so Mark is in a clean environment (thank you ladies again for such a tremendous blessing), several people have brought us food (thanks Julie, Anne, Allie, Meghan, and Betty). It is so nice not to have to worry about dinner each night. Several people from our church our maintaining our yardwork since Mark can't and I must admit, our yard has not looked this good since Mark's dad was maintaining it.
So, the latest updates. Mark had an appt today to get his medicine and another CT scan. He now does not have to go in for medicine. We don't have to go back til TUESDAY!!! That's right and they will check his blood to make sure he is still going good. If he is, we go home; if he needs something, we get it before he leaves. As long as he stays well, we will only have to go back once or twice a week. Mark has lost a lot of weight (about 20 pounds). Thankfully, he actually needed to lose some weight, so he actually looks really good and down 2 pant sizes. His hair is starting to come out. He is really upset about it. It is not really noticeable, his hair is just thinner than usual. If you talk to him, please don't say anything, let him bring it up if he wants to. He is upset and it is a tramatic experience for him. Mark is also starting to slowly come off some of his medicine. He just finished one antibiotic, finishes his steroid tomorrow, and no longer has to take the 3 pills a day for the nerve pain in his feet that he had in the hospital because the pain has stopped for about 2 weeks.
So, we are doing really well. Still tired and adjusting, but good. We go to the doctor as needed, Mark takes his meds everyday like a good little boy, spend time with our sweet little boy (who is completely daytime potty trained, sure wish we could get him to put on a night time diaper so he doesn't wake up soaked each morning), my class is over (start another one in about a week), work is out for the summer, and just gonna spend time and appreciate life for a while. Also, we are supposed to find out if Mark is in remission at the end of June; then we will find out the game plan for the future.
Again, we appreciate all your prayers, love, and support. This experience has taught me a lot. It has brought Mark and I even closer to each other and closer to God. God is the only thing getting us through this, and he deserves all the praise and glory.
We appreciate any sort of help folks want to offer, especially meals because it is one less thing to have to worry about each day. Feel free to leave me a comment on this blog, email me (kashepherd1@gmail.com) or call or text me 678-975-4954 if you wondering how you can help us over the next several months. Also, if you want to mail cards our home address is
1252 Clearwater Drive
Winder, GA 30680
Thank you all for everything. I promise to do better at updating the blog. With love and a thankful heart,
Amanda
Sunday, May 15, 2011
Tomorrow, Tomorrow; I Love Ya Tomorrow
First things first. The doctor came in today and told Mark that if he is doing as well tomorrow as he is today...drum roll please...he can go home!!! That's right folks, home. Basically Mark had another great day. He said he today he feels better than he has felt since the end of March (when this whole mess was starting). He ate well, walked a little over a mile, and the fluid in his ankles and chest is going away.
So the game plan is hopefully Mark will be discharged tomorrow. We will finally get to go home. Brodie will stay with my mom for just a couple more days, so I can make sure everything is set up for Mark before we have to worry about Brodie. (By the way, we got to see Brodie again today. He is so cute. He got right in his daddy's mask-covered and said "you all better now". It was so sweet.) Once Mark gets home he will have to return to the hospital every day for 10 days as an outpatient to get IV antibiotics, have his blood checked, and get any necessary blood products. Thankfully, my granny is is town to watch over Mark this week, so she will take him to his outpatient this week, so I can continue to work. I am sure tomorrow the doctor will give us tons of discharge instructions including lots of medications and outpatient information.
So at this point, I have started gathering our belongings so we can be ready to go tomorrow as soon as I get here. We are anxiously awaiting official word tomorrow that we can leave.
Prayer requests:
1. Pray Mark is well enough tomorrow to go home.
2. Pray for me. I am scared to death about taking him home. Here I know he is cared for regardless of what happens; at home he has me - that's scary.
3. Pray for no complications once we return home.
Continued thanks to everyone for their help this past month. Those interested in bringing food to our house now that we are returning home; give me a call 678-975-4954.
With a thankful heart,
Amanda
So the game plan is hopefully Mark will be discharged tomorrow. We will finally get to go home. Brodie will stay with my mom for just a couple more days, so I can make sure everything is set up for Mark before we have to worry about Brodie. (By the way, we got to see Brodie again today. He is so cute. He got right in his daddy's mask-covered and said "you all better now". It was so sweet.) Once Mark gets home he will have to return to the hospital every day for 10 days as an outpatient to get IV antibiotics, have his blood checked, and get any necessary blood products. Thankfully, my granny is is town to watch over Mark this week, so she will take him to his outpatient this week, so I can continue to work. I am sure tomorrow the doctor will give us tons of discharge instructions including lots of medications and outpatient information.
So at this point, I have started gathering our belongings so we can be ready to go tomorrow as soon as I get here. We are anxiously awaiting official word tomorrow that we can leave.
Prayer requests:
1. Pray Mark is well enough tomorrow to go home.
2. Pray for me. I am scared to death about taking him home. Here I know he is cared for regardless of what happens; at home he has me - that's scary.
3. Pray for no complications once we return home.
Continued thanks to everyone for their help this past month. Those interested in bringing food to our house now that we are returning home; give me a call 678-975-4954.
With a thankful heart,
Amanda
Saturday, May 14, 2011
What a rollercoaster ride
Sorry for not blogging the last couple of days, Thursday the blog site was unavailable and last night it was far more important that I sleep.
So first things first Thursday May 12, 2011
Mark had a fever today. His blood levels are all dropping so he had to have 2 blood transfusions, 2 things of plasma, and 2 things of platelets. His white cell count is 1.2, and the oncologist said he may be going home in the next 7 - 10 days. This is very exciting news. It is the first time anyone has given us even a possible date range. He walked a couple of laps and ate some food. He started having more chest pains. They did a EKG, which was normal; a chest x-ray which showed fluid in his lungs. They are giving him a little medicine every so often to help him urinate in an effort to get rid of the fluid. Just before bedtime, they hooked Mark onto a heart monitor, so they can monitor his heart rate until further notice just as an added precaution.
Friday May 13th. Yes that's right Friday the 13th.
Today started off fairly normal with blood products and a slight fever. Ms. Dale came to stay with Mark, which turned out to be a huge blessing. Just afternoon, Mark got up to use the restroom, and by the time he sat back down he could not breathe. He started coughing and struggling to catch his breath. Mark officially went into respiratory distress. Basically, it took about 5 doctors and nurses approximately 2 hours to get Mark's breathing under control. They used a combination of an oxygen mask, anxiety medication, breathing treatments, wet wash cloths, and breathing techniques to calm him down and regulate his breathing. After the episode was over, Mark rested and continued on the oxygen mask.
By the time I got to the hospital after work, Mark was starting to feel a little better. He asked me to bring him some McD's so I bought him a McDouble with cheese and a small fry. He ate all of it, which made me very happy. Our friend Eric came by to visit with us. We had a great time hanging out and talking. Mark continued to munch on stuff, like cereal and ice cream. Turns out his munchies are most likely due to the steroid the doctors started him on to avoid future respiratory distress and ease the inflammation around his heart. Needless to say, very happy Friday the 13th is over.
Now for today, Saturday May 14th.
Mark and I both slept really good last night. We finally woke up and started to function about 10:30 this morning. It is amazing the difference 24 hours and various medications can do. Mark woke up with a smile on his face. He said he felt really good. We sat around and watched TV while he got some red blood cells. The respiratory therapist came and gave him 2 breathing treatments to further help increase his oxygen levels. We also walked 6 laps around the unit, and got to see Brodie. Brodie was so cute. He got a hair cut, so he looks just precious. He put heart shape stickers on an envelop as a card for his daddy. He was so excited to give the card to his daddy, he nearly jumped out of his chair. He also gave me a GREAT hug, and told me the big pink heart is for me. I love that sweet little boy.
So, a couple of new developments. First the doctor thinks all of Mark's respiratory problems are the result of ATRA Syndrome. About 20% of ATRA patients develop ATRA syndrome which causes weight gain, fluid retention around the lungs, and shortness of breath. They treat it with steroids and said Mark should react fine to the ATRA after this; I sure hope so because Mark will be taking this at least until June 25th, and probably intermittently for a while. Second new development is Mark's blood sugar. The steroids often cause your body not to process sugar properly (like a diabetic) so now they have to check his sugar by pricking his finger several times a day. Anytime his blood sugar is over 180, they have to give him a shot of insulin. Now, just as a reminder, Mark hates needles. He has had to get insulin twice today, but thankfully he said it is not that bad. Actually the finger prick hurts the most.
So, we are finishing our night watching TV. Mark gets the medicine to help him urinate a few times a day in order to get the fluid out of his chest and feet. They are continuing to monitor his oxygen, and he may have to sleep with the oxygen mask again tonight. By the way, Mark says hi to everyone reading this.
Pray for continued improvement Mark's breathing.
Pray for the excess fluid to go away.
Pray for more good days, they are very encouraging to us both.
With a thankful heart,
Amanda
So first things first Thursday May 12, 2011
Mark had a fever today. His blood levels are all dropping so he had to have 2 blood transfusions, 2 things of plasma, and 2 things of platelets. His white cell count is 1.2, and the oncologist said he may be going home in the next 7 - 10 days. This is very exciting news. It is the first time anyone has given us even a possible date range. He walked a couple of laps and ate some food. He started having more chest pains. They did a EKG, which was normal; a chest x-ray which showed fluid in his lungs. They are giving him a little medicine every so often to help him urinate in an effort to get rid of the fluid. Just before bedtime, they hooked Mark onto a heart monitor, so they can monitor his heart rate until further notice just as an added precaution.
Friday May 13th. Yes that's right Friday the 13th.
Today started off fairly normal with blood products and a slight fever. Ms. Dale came to stay with Mark, which turned out to be a huge blessing. Just afternoon, Mark got up to use the restroom, and by the time he sat back down he could not breathe. He started coughing and struggling to catch his breath. Mark officially went into respiratory distress. Basically, it took about 5 doctors and nurses approximately 2 hours to get Mark's breathing under control. They used a combination of an oxygen mask, anxiety medication, breathing treatments, wet wash cloths, and breathing techniques to calm him down and regulate his breathing. After the episode was over, Mark rested and continued on the oxygen mask.
By the time I got to the hospital after work, Mark was starting to feel a little better. He asked me to bring him some McD's so I bought him a McDouble with cheese and a small fry. He ate all of it, which made me very happy. Our friend Eric came by to visit with us. We had a great time hanging out and talking. Mark continued to munch on stuff, like cereal and ice cream. Turns out his munchies are most likely due to the steroid the doctors started him on to avoid future respiratory distress and ease the inflammation around his heart. Needless to say, very happy Friday the 13th is over.
Now for today, Saturday May 14th.
Mark and I both slept really good last night. We finally woke up and started to function about 10:30 this morning. It is amazing the difference 24 hours and various medications can do. Mark woke up with a smile on his face. He said he felt really good. We sat around and watched TV while he got some red blood cells. The respiratory therapist came and gave him 2 breathing treatments to further help increase his oxygen levels. We also walked 6 laps around the unit, and got to see Brodie. Brodie was so cute. He got a hair cut, so he looks just precious. He put heart shape stickers on an envelop as a card for his daddy. He was so excited to give the card to his daddy, he nearly jumped out of his chair. He also gave me a GREAT hug, and told me the big pink heart is for me. I love that sweet little boy.
So, a couple of new developments. First the doctor thinks all of Mark's respiratory problems are the result of ATRA Syndrome. About 20% of ATRA patients develop ATRA syndrome which causes weight gain, fluid retention around the lungs, and shortness of breath. They treat it with steroids and said Mark should react fine to the ATRA after this; I sure hope so because Mark will be taking this at least until June 25th, and probably intermittently for a while. Second new development is Mark's blood sugar. The steroids often cause your body not to process sugar properly (like a diabetic) so now they have to check his sugar by pricking his finger several times a day. Anytime his blood sugar is over 180, they have to give him a shot of insulin. Now, just as a reminder, Mark hates needles. He has had to get insulin twice today, but thankfully he said it is not that bad. Actually the finger prick hurts the most.
So, we are finishing our night watching TV. Mark gets the medicine to help him urinate a few times a day in order to get the fluid out of his chest and feet. They are continuing to monitor his oxygen, and he may have to sleep with the oxygen mask again tonight. By the way, Mark says hi to everyone reading this.
Pray for continued improvement Mark's breathing.
Pray for the excess fluid to go away.
Pray for more good days, they are very encouraging to us both.
With a thankful heart,
Amanda
Wednesday, May 11, 2011
Praise God!!!
So, Mark feels so much better today than he has since Saturday. He still feels very tired, he is fighting a fever, and he has a hard time breathing calmly...but...he feels much better. Today, Mark woke up after finally breaking a fever with nausea. He would have vomited, but he had not eaten since Sunday so there was nothing in his stomach. He continued to fight with the fever into the early afternoon. They also gave him some medicine to help him urinate because he physically could not urinate. They also took a sample to test to try and figure out what is causing the problem. The doctors also did another CT scan of his chest to see about his pneumonia (he started coughing today and they want to make sure everything is ok).
By mid-afternoon, Mark ate half his chicken, half his mashed potatoes, and all of his chocolate cake. This is truly an answered prayer. He does not have the chest pain like he has the past few days, and he is in better spirits. The doctor changed his depression medication to wellbutrin, hopefully this medicine will work. I admit, when I walked in the room this evening after work, I could tell a difference in him immediately. It brought pure joy to my heart.
I want to say a great big thank you to Keith and Mary Johnson for staying with Mark today (and tomorrow). It helps me make it through the day at work knowing someone is here with him. He seemed to enjoy the visits, and he is looking forward to seeing them again tomorrow. Another big praise is McDonald's. I bought McD's tonight for dinner on the 1st floor and brought it to Mark's room to eat. He saw the bag and said "that looks good". Needless to say, Mark ate about half my fries. I was so happy, I offered to go get him more if he wanted them. Right now, he is thinking he will ask Keith to bring him some Chik-fil-A tomorrow cause I told him they have sweet potato fries now (which are awesome by the way - thanks for letting me try some Rory)! Anyway, as you can tell, I am so happy he is feeling better and eating better. Now we just need to get him moving more and keep him this way.
Prayer requests for today:
1. CT scan shows no pneumonia.
2. Mark's depression and anxiety get under control. I really think it will make all the difference.
3. His cell counts continue to drop (they dropped from 5.4 to 4.2 today YAY!!!)
4. The swelling in Mark's ankles goes away.
5. Mark feels up to seeing Brodie tomorrow. I know that will make him feel better too. On a side note, I feel confident our prayers will be granted because our little boy prayed for Jesus to make daddy feel better today. If that doesn't work, I don't know what will. I sure do love that precious little boy.
Keep the prayers coming and thank you all for your wonderful and encouraging comments on this blog. I really enjoy writing it, and I hope it helps each of you feel connected to us during this difficult time.
With a thankful heart,
Amanda
By mid-afternoon, Mark ate half his chicken, half his mashed potatoes, and all of his chocolate cake. This is truly an answered prayer. He does not have the chest pain like he has the past few days, and he is in better spirits. The doctor changed his depression medication to wellbutrin, hopefully this medicine will work. I admit, when I walked in the room this evening after work, I could tell a difference in him immediately. It brought pure joy to my heart.
I want to say a great big thank you to Keith and Mary Johnson for staying with Mark today (and tomorrow). It helps me make it through the day at work knowing someone is here with him. He seemed to enjoy the visits, and he is looking forward to seeing them again tomorrow. Another big praise is McDonald's. I bought McD's tonight for dinner on the 1st floor and brought it to Mark's room to eat. He saw the bag and said "that looks good". Needless to say, Mark ate about half my fries. I was so happy, I offered to go get him more if he wanted them. Right now, he is thinking he will ask Keith to bring him some Chik-fil-A tomorrow cause I told him they have sweet potato fries now (which are awesome by the way - thanks for letting me try some Rory)! Anyway, as you can tell, I am so happy he is feeling better and eating better. Now we just need to get him moving more and keep him this way.
Prayer requests for today:
1. CT scan shows no pneumonia.
2. Mark's depression and anxiety get under control. I really think it will make all the difference.
3. His cell counts continue to drop (they dropped from 5.4 to 4.2 today YAY!!!)
4. The swelling in Mark's ankles goes away.
5. Mark feels up to seeing Brodie tomorrow. I know that will make him feel better too. On a side note, I feel confident our prayers will be granted because our little boy prayed for Jesus to make daddy feel better today. If that doesn't work, I don't know what will. I sure do love that precious little boy.
Keep the prayers coming and thank you all for your wonderful and encouraging comments on this blog. I really enjoy writing it, and I hope it helps each of you feel connected to us during this difficult time.
With a thankful heart,
Amanda
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