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
Friday, May 27, 2011
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
Better, but with room for improvement
Mark had a better day today, but still lots of room for improvement. He describes his day as better than yesterday because the pain in his chest is lessening. This is definitely good. The doctors are adjusting his medication in hopes of decreasing some of the side effects, such as the pain. A psychiatrist came to see Mark today also. She got on to Mark because he has not been as active as she wants him to be. She talked with him about the importance of getting up and moving each morning, and doing "normal" activities during the day to try and keep mentally sharp and positive. According to Mark's mom, she also gave us permission to really push Mark and pester him about eating, moving around, etc. This is good for us to know that is okay, but Mark is not too excited about it.
They performed a CT scan of Mark's brain to see if it is responding to the medication they started him on for his anxiety. The doctor thinks it is not working, and will most likely change the medication in hopes of decreasing his anxiety. Hopefully reducing his anxiety will help some of his other side effects lessen. I assume we will hear CT results tomorrow.
For those interested, my day was also pretty good. My lack of sleep started to catch up with me today. I struggled at certain times today to simply stay awake and focused at work. I did get a lot done though, which was nice. I was worried about Mark, it is really hard to be away from him all day and not know what is going on. I went by my house and took a very short (about 20 minutes) nap, but it was fantastic. I also picked Brodie up from school for the first time since Friday April 15th. It was great getting to see him. I often find myself thinking "gee, I wish he would stop talking for one second". Today however, I would turn the radio down just to hear his precious voice tell me whatever random comment. I have missed that voice so much. I drove him to the hospital, so he could go home with his GG (Mark's mom). He was excited to see her too. I love that boogie.
Prayers for today:
1. Mark is struggling to use the restroom. I am concerned he is retaining fluid, which may cause problems. Pray that this problem will be resolved without additional problems.
2. Pray for Mark's anxiety to disappear. It only makes each day worse, and I am ready to have my husband back to his normal attitude.
3. Pray for continued decrease in pain (let's make that no pain).
4. Pray that his cell count continues to drop, and get to zero quickly. We are ready to go home, which won't happen until he hits zero and comes back up.
5. Pray for our family to have continued strength to continue on the difficult journey ahead and wisdom to make the best decisions for our family.
With a thankful heart,
Amanda
They performed a CT scan of Mark's brain to see if it is responding to the medication they started him on for his anxiety. The doctor thinks it is not working, and will most likely change the medication in hopes of decreasing his anxiety. Hopefully reducing his anxiety will help some of his other side effects lessen. I assume we will hear CT results tomorrow.
For those interested, my day was also pretty good. My lack of sleep started to catch up with me today. I struggled at certain times today to simply stay awake and focused at work. I did get a lot done though, which was nice. I was worried about Mark, it is really hard to be away from him all day and not know what is going on. I went by my house and took a very short (about 20 minutes) nap, but it was fantastic. I also picked Brodie up from school for the first time since Friday April 15th. It was great getting to see him. I often find myself thinking "gee, I wish he would stop talking for one second". Today however, I would turn the radio down just to hear his precious voice tell me whatever random comment. I have missed that voice so much. I drove him to the hospital, so he could go home with his GG (Mark's mom). He was excited to see her too. I love that boogie.
Prayers for today:
1. Mark is struggling to use the restroom. I am concerned he is retaining fluid, which may cause problems. Pray that this problem will be resolved without additional problems.
2. Pray for Mark's anxiety to disappear. It only makes each day worse, and I am ready to have my husband back to his normal attitude.
3. Pray for continued decrease in pain (let's make that no pain).
4. Pray that his cell count continues to drop, and get to zero quickly. We are ready to go home, which won't happen until he hits zero and comes back up.
5. Pray for our family to have continued strength to continue on the difficult journey ahead and wisdom to make the best decisions for our family.
With a thankful heart,
Amanda
Monday, May 9, 2011
Today started off difficult. Mark and I were up throughout the night because he could not work and had to make frequent restroom breaks. Needless to say, I only had about 2 1/2 hours of sleep.
I returned to work today; first day back since Mark was diagnosed. It was nice going to work and having a little normalcy in my life for just a few hours. I spent a lot of the day talking with co-workers who wanted to know how we are doing, and what the future holds for us. Unfortunately, I don't know a lot about the future treatment steps, but I tried to explain what I have been told. I did get some work done, which was such a great feeling. Of course, I worried about Mark all day. I called him and his mom several times during the day to see how he was feeling and get the update from the doctor.
Mark's mom spent the day with him again. He ate a little food today, hopefully he will eat more tomorrow. Praise God the pain in Mark's feet diminished a lot, to the point it basically disappeared. This has been a true blessing. Unfortunately, he still has severe chest pain. I know I have said this before, but the doctors and nurses here are wonderful. They think the pain in his chest is a side effect of the medication, but just to make sure it is not something more severe, they ran lots of tests today. The did an EKG, an Echo, and blood tests to analyze the enzymes in his heart. Again, praise God, all the tests came back normal. They will continue running the blood tests for a couple days just to make sure something does not pop up later.
Tonight is simply trying to find a position to be comfortable with minimal pain. The nurse started him on just a little oxygen. His oxygen levels are great, but he was started to panic a little feeling like he could not breathe (though his oxygen was 98%). Basically, the oxygen simply comforts him which reduces his anxiety, which reduces his pain, and allows him to sleep better.
Pray for continued improvement of Mark's pain and side effects. When he is comfortable and not feeling sick, he is able to actively work on improving his overall health and strength.
Pray for continued strength and comfort as we deal with this whole process, especially the time away from Brodie, which is extremely difficult.
Pray for Mark to have a restful night, so he can feel energized tomorrow. We all know how important a good night sleep is when sick.
Pray for me as I continue to go to work. It is difficult to balance work, caring for Mark, and wanting desperately to see Brodie. I am definitely looking forward to returning home with my family.
Thanks for all you do,
Amanda
Sunday, May 8, 2011
One Step Forward, Two Steps Back
First of all, happy mother's day to all the mom's reading this blog. I was blessed today to spend the day with my mom and my little boy. It healed my heart a little to spend time with him. We didn't do anything special, but we were together. Mark's mom spent the night with him last night and spent the day with him today. I know they enjoyed the time together also.
Well, I am glad we had the positive day yesterday because today was a difficult day for Mark. He woke up this morning with extremely sore feet. I admit, my first thought maybe it was from all the walking he did yesterday. Turns out on possible side effect of the chemo is very painful nerve pain in your extremities like hands and feet. As I write this, Mark's feet hurt so bad he literally cannot stand up for longer than a minute or so, and he can't take more than maybe one step.
He is also having some pain in his chest. My understanding is we hope to get more definitive information from the doctor tomorrow regarding what is going on right now. Other than that, Mark's mom said Mark slept most of the day because of the extra medications they gave him for his nausea and pain. He did not eat today and due to his pain, he did not get up today. Hopefully tomorrow will be a better day.
Prayer for tonight:
1. Take the pain away from Mark's feet so he can get up tomorrow and have a better day, and exercise to avoid pneumonia.
2. Take away the nausea so Mark can eat tomorrow. Food equals a healthier body.
3. Give me peace tomorrow. I will be returning to work in the morning, and I am extremely anxious about it to say the least.
4. Continue to decrease Mark's cell count. Once it hits zero, we can start working our way back up. Then we get to go home.
Thanks for your continued prayers and support,
Amanda
Well, I am glad we had the positive day yesterday because today was a difficult day for Mark. He woke up this morning with extremely sore feet. I admit, my first thought maybe it was from all the walking he did yesterday. Turns out on possible side effect of the chemo is very painful nerve pain in your extremities like hands and feet. As I write this, Mark's feet hurt so bad he literally cannot stand up for longer than a minute or so, and he can't take more than maybe one step.
He is also having some pain in his chest. My understanding is we hope to get more definitive information from the doctor tomorrow regarding what is going on right now. Other than that, Mark's mom said Mark slept most of the day because of the extra medications they gave him for his nausea and pain. He did not eat today and due to his pain, he did not get up today. Hopefully tomorrow will be a better day.
Prayer for tonight:
1. Take the pain away from Mark's feet so he can get up tomorrow and have a better day, and exercise to avoid pneumonia.
2. Take away the nausea so Mark can eat tomorrow. Food equals a healthier body.
3. Give me peace tomorrow. I will be returning to work in the morning, and I am extremely anxious about it to say the least.
4. Continue to decrease Mark's cell count. Once it hits zero, we can start working our way back up. Then we get to go home.
Thanks for your continued prayers and support,
Amanda
Saturday, May 7, 2011
It is all about the Attitude
So today was an exciting day. First, the good day began last night when I fell asleep at 9:00. I was exhausted and got about 10 hours of sleep, not sure the last time I slept that long. I left early this morning to get my long overdue haircut. I went to a place in Athens. The people were wonderful. They told me that when Mark starts to have his hair fall out, to call them and they will shave his head for free. The main guy, Mark Meeler, said chemo patients usually handled it better of they shave their head because they maintain control of the situation. It must be true; when I told Mark, he was so touched he started to cry.
After my haircut, I went to he house to get a few things done, then to my dad's house. Then to my mom's to get Brodie. Then Brodie and I went to the hospital to see Mark. It was a great visit. Brodie sat in Mark's lap while they colored Brodie race car coloring book. They both enjoyed the visit.
So, what's the update on Mark? Well today he was a new person. First of all, his white cell count is starting to drop, which is good. The sooner it drops, the sooner it comes back up so we can go home. The best news is Mark's new motivation. Since being in the hospital, all he wants to do is sleep and lay around. Well today his attitude changed. He ate almost all of his food today and walked 2.5 miles. He said he is determined to stay well and get out of the hospital as soon as he can. I literally cried tears of joy hearing him talk about his new attitude. Such a blessing and a major answered prayer - thank you Jesus.
So I am staying at my mom's tonight with Brodie, so I can wake up with him tomorrow for Mother's Day, and Mark's mom is staying at the hospital with Mark so she can see him for Mother's Day.
Keep the prayers coming and thank you for all the blessings you have brought to our lives.
Amanda
After my haircut, I went to he house to get a few things done, then to my dad's house. Then to my mom's to get Brodie. Then Brodie and I went to the hospital to see Mark. It was a great visit. Brodie sat in Mark's lap while they colored Brodie race car coloring book. They both enjoyed the visit.
So, what's the update on Mark? Well today he was a new person. First of all, his white cell count is starting to drop, which is good. The sooner it drops, the sooner it comes back up so we can go home. The best news is Mark's new motivation. Since being in the hospital, all he wants to do is sleep and lay around. Well today his attitude changed. He ate almost all of his food today and walked 2.5 miles. He said he is determined to stay well and get out of the hospital as soon as he can. I literally cried tears of joy hearing him talk about his new attitude. Such a blessing and a major answered prayer - thank you Jesus.
So I am staying at my mom's tonight with Brodie, so I can wake up with him tomorrow for Mother's Day, and Mark's mom is staying at the hospital with Mark so she can see him for Mother's Day.
Keep the prayers coming and thank you for all the blessings you have brought to our lives.
Amanda
Friday, May 6, 2011
Muffins for Mom!!!
The doctor came in today and said Mark is doing well. At this point we are simply waiting for the chemo to drop Mark's white cell count to zero and then build back up. Once they build up, we get to go home. We did have a visit from Mark's cousin Brian today. Mark really enjoyed the visit. They watched Monty Python and the Holy Grail and had a good time. It also worked out well because I had to leave for a few hours this morning, and Mark was not alone the entire time because of Brian's unexpected visit.
So, where did I go? I went to see my precious little boy at his school for "Muffins for Mom". This was the first time I saw Brodie since Sunday. It was amazing to see him. He came to me and gave me a big hug and I started to cry immediately. I miss seeing him so much. I know Mark misses him too. It is hard on all of us. Anyway, after a few minutes of holding him and quietly crying, Brodie and I went and enjoyed a couple of muffins. He was so cute. He told me about all his friends, and took his sweet time eating and drinking his juice. I think he wanted to make it last as long as possible, just like me.
Thankfully leaving him worked out well because he decided he was finished and started playing with his friends. I simply gave him a hug and kiss, and headed out. This was also the first time all the staff at Brodie's saw me since Mark's diagnosis, so I spent probably another 30 minutes talking to several of them, giving them updates, and telling them the information I have at this point.
On my way back towards the hospital, I stopped at my mom's work so she could see how I am doing. She is worried about Mark and me. She has a unique perspective of this situation, and I know it is hard for her. I got back to the hospital about 4 hours after I left, just in time to hear what the doctor had to say. Once Brian left, Mark and I both actually fell back asleep for a short time. Needless to say, I am exhausted. All the stress and sleepless nights from the past two weeks are starting to catch up with me. Thankfully, Mark's mom is coming tomorrow to stay with Mark for a few days. I will check in at home and then stay at my mom's house. This way I get to wake up with my little boy on Mother's Day. Then I will return to work Monday, and visit Mark each night before going home or to my mom's to sleep.
Anyway, I am looking forward to the next couple of days, but I dread leaving Mark. I am comforted by being in the hospital with him because I know what is happening; however, I also know I have to take care of myself so I can take care of Mark and Brodie. Continue to pray for my precious little family and thank you for your support.
Amanda
So, where did I go? I went to see my precious little boy at his school for "Muffins for Mom". This was the first time I saw Brodie since Sunday. It was amazing to see him. He came to me and gave me a big hug and I started to cry immediately. I miss seeing him so much. I know Mark misses him too. It is hard on all of us. Anyway, after a few minutes of holding him and quietly crying, Brodie and I went and enjoyed a couple of muffins. He was so cute. He told me about all his friends, and took his sweet time eating and drinking his juice. I think he wanted to make it last as long as possible, just like me.
Thankfully leaving him worked out well because he decided he was finished and started playing with his friends. I simply gave him a hug and kiss, and headed out. This was also the first time all the staff at Brodie's saw me since Mark's diagnosis, so I spent probably another 30 minutes talking to several of them, giving them updates, and telling them the information I have at this point.
On my way back towards the hospital, I stopped at my mom's work so she could see how I am doing. She is worried about Mark and me. She has a unique perspective of this situation, and I know it is hard for her. I got back to the hospital about 4 hours after I left, just in time to hear what the doctor had to say. Once Brian left, Mark and I both actually fell back asleep for a short time. Needless to say, I am exhausted. All the stress and sleepless nights from the past two weeks are starting to catch up with me. Thankfully, Mark's mom is coming tomorrow to stay with Mark for a few days. I will check in at home and then stay at my mom's house. This way I get to wake up with my little boy on Mother's Day. Then I will return to work Monday, and visit Mark each night before going home or to my mom's to sleep.
Anyway, I am looking forward to the next couple of days, but I dread leaving Mark. I am comforted by being in the hospital with him because I know what is happening; however, I also know I have to take care of myself so I can take care of Mark and Brodie. Continue to pray for my precious little family and thank you for your support.
Amanda
Wednesday, May 4, 2011
Sleepy Time
Mark had another good day today. I can tell his body is wearing down some because he is very tired. Last night he fell asleep about 10:00 and slept until about 11:00 this morning with the occasional restroom trip and visit from nursing staff. Then after going just over 1 mile on the exercise bike in the exercise room, and eating most of his lunch, he laid down to take a nap. So far tonight, Mark feel asleep at 9:00 (not sure the last time that happened) and I feel confident will sleep just as long unless he starts to feel sick. The nursing staff is so nice when they come in and he is sleeping. They try desperately to let him continue sleeping because they know how important his sleep is to get better.
Other than the noticeable increase in Mark's sleep, he is doing well right now, but I know not so good days are ahead when his chemo really kicks in. The oncologist says Mark is doing really good and is handling the treatment well, after the difficulty the first several days last week and this past weekend.
We did get to talk to our Brodie today. He is staying with my mom and going to his school. He is working really hard at using the potty like a big boy. He is doing such a great job with it; I am so proud. When we talked to him tonight, he asked his daddy if he felt better (it was precious). Then when Mark said he was feeling better, Brodie said to his Nana (that's my mom) "he's feeling better!". My mom said his face lit up with pure joy. That is precious. I love that little boy with all my heart, and not seeing him is very difficult. I know I can see him whenever I want to, and I will see him in a couple days; but I have to make sure his daddy is okay, so I have to be here. Mark is heartbroken that he can't see Brodie every day, but I plan to get Brodie down here to see his daddy every day we can, though Mark has to wear a mask. Just seeing Brodie makes the day better.
Today I am grateful for our mothers. They have been rocks during the early parts of this long process. They have helped in numerous ways, most notably taking care of Brodie. They offer encouragement and bring needed supplies, but most importantly they allow Mark and I to focus on Mark's health knowing Brodie is being loved and cared for, and most likely very spoiled, while we get through the first phase of Mark's treatment. Thanks you GG and Nana.
Pray for many more good days ahead for Mark during his treatment.
Pray for people who are available and willing to sit with Mark during the upcoming days so I can go back to work. There are only 2 weeks of school left, and I need to go back to get some things done.
Pray for continued strength and courage to get through this time.
Amanda
Other than the noticeable increase in Mark's sleep, he is doing well right now, but I know not so good days are ahead when his chemo really kicks in. The oncologist says Mark is doing really good and is handling the treatment well, after the difficulty the first several days last week and this past weekend.
We did get to talk to our Brodie today. He is staying with my mom and going to his school. He is working really hard at using the potty like a big boy. He is doing such a great job with it; I am so proud. When we talked to him tonight, he asked his daddy if he felt better (it was precious). Then when Mark said he was feeling better, Brodie said to his Nana (that's my mom) "he's feeling better!". My mom said his face lit up with pure joy. That is precious. I love that little boy with all my heart, and not seeing him is very difficult. I know I can see him whenever I want to, and I will see him in a couple days; but I have to make sure his daddy is okay, so I have to be here. Mark is heartbroken that he can't see Brodie every day, but I plan to get Brodie down here to see his daddy every day we can, though Mark has to wear a mask. Just seeing Brodie makes the day better.
Today I am grateful for our mothers. They have been rocks during the early parts of this long process. They have helped in numerous ways, most notably taking care of Brodie. They offer encouragement and bring needed supplies, but most importantly they allow Mark and I to focus on Mark's health knowing Brodie is being loved and cared for, and most likely very spoiled, while we get through the first phase of Mark's treatment. Thanks you GG and Nana.
Pray for many more good days ahead for Mark during his treatment.
Pray for people who are available and willing to sit with Mark during the upcoming days so I can go back to work. There are only 2 weeks of school left, and I need to go back to get some things done.
Pray for continued strength and courage to get through this time.
Amanda
A Day of Blessings
Today (Tuesday) was a really good day. Mark had probably the best night sleep since we got here, with the exception of the "4 am stand up so we can weigh you". He also slept on and off until about 1:00 when we were blessed with some visitors.
The music minister, youth minister, and our deacon from our church. They offered laughter and brought some joy to our day. They are such wonderful men and aching to serve us in any way possible. They were quickly joined by Mark's mom's deacon and a fellow church member named Randall. They were all truly a blessing. It is so encouraging and re-energizing to be surrounded by godly men claiming God's power and control during situations like right now. Randall was a special blessing to Mark and I because he was in this exact unit, just down the hall from Mark's room a couple of years ago. Randall was diagnosed with AML and received treatment here. He has now been in remission for 2 years if I remember correctly. He was a great encouragement to Mark because he literally knows exactly how Mark feels right now. He knows the fear, pain, and sickness Mark is experiencing right now. He spoke about the wonderful care he received here, and it was so encouraging to speak with someone who knew exactly who we were talking about when we mentioned specific doctors, nurses, and techs. The most encouraging thing Randall said, which Mark really needed to hear, was to keep a positive attitude, do what the doctors say, and trust God to bring him through this time. It gets difficult at times to keep a positive attitude when you feel so sick and helpless like Mark feels right now. Randall helped Mark to get an inside opinion on the importance of staying focused and positive. The visit closed with a fantastic prayer from our deacon that brought tears to our eyes (and the eyes of our sweet nurse who was tending to Mark at the time). The visit was certainly a gift from God because the encouraging words were exactly what Mark and I needed to hear today.
After the visit, Mark ate 3 entire chicken fingers at lunch, walked 4 laps, and at almost his entire cheeseburger at dinner. These are all signs that he feels good today. His mom came by to visit and bring us some freshly washed clothes and some pictures she printed from our trip to Panama City just days before the diagnosis. The pictures are precious and I already cherish them. Brodie was adorable and had such a wonderful time. We all had a great time, and I look forward to the next family vacation we take as soon as Mark is allowed to travel. That family time is crucial, and I know I took it for granted. I will most likely take it for granted again once this trial is over, but I pray I appreciate the time more often than I take it for granted. I am blessed to have my precious family, and I will hold on to them tighter now than ever before. They keep me going and I love both my boys.
Thank you Jesus for all the blessings in my life right now. I find comfort in knowing you are controlling everything and you will take care of us at all times. Thank you for my friends and family, and the blessings they bring to my life everyday. I pray for a good day tomorrow and each day to follow. Amen.
Amanda
The music minister, youth minister, and our deacon from our church. They offered laughter and brought some joy to our day. They are such wonderful men and aching to serve us in any way possible. They were quickly joined by Mark's mom's deacon and a fellow church member named Randall. They were all truly a blessing. It is so encouraging and re-energizing to be surrounded by godly men claiming God's power and control during situations like right now. Randall was a special blessing to Mark and I because he was in this exact unit, just down the hall from Mark's room a couple of years ago. Randall was diagnosed with AML and received treatment here. He has now been in remission for 2 years if I remember correctly. He was a great encouragement to Mark because he literally knows exactly how Mark feels right now. He knows the fear, pain, and sickness Mark is experiencing right now. He spoke about the wonderful care he received here, and it was so encouraging to speak with someone who knew exactly who we were talking about when we mentioned specific doctors, nurses, and techs. The most encouraging thing Randall said, which Mark really needed to hear, was to keep a positive attitude, do what the doctors say, and trust God to bring him through this time. It gets difficult at times to keep a positive attitude when you feel so sick and helpless like Mark feels right now. Randall helped Mark to get an inside opinion on the importance of staying focused and positive. The visit closed with a fantastic prayer from our deacon that brought tears to our eyes (and the eyes of our sweet nurse who was tending to Mark at the time). The visit was certainly a gift from God because the encouraging words were exactly what Mark and I needed to hear today.
After the visit, Mark ate 3 entire chicken fingers at lunch, walked 4 laps, and at almost his entire cheeseburger at dinner. These are all signs that he feels good today. His mom came by to visit and bring us some freshly washed clothes and some pictures she printed from our trip to Panama City just days before the diagnosis. The pictures are precious and I already cherish them. Brodie was adorable and had such a wonderful time. We all had a great time, and I look forward to the next family vacation we take as soon as Mark is allowed to travel. That family time is crucial, and I know I took it for granted. I will most likely take it for granted again once this trial is over, but I pray I appreciate the time more often than I take it for granted. I am blessed to have my precious family, and I will hold on to them tighter now than ever before. They keep me going and I love both my boys.
Thank you Jesus for all the blessings in my life right now. I find comfort in knowing you are controlling everything and you will take care of us at all times. Thank you for my friends and family, and the blessings they bring to my life everyday. I pray for a good day tomorrow and each day to follow. Amen.
Amanda
Tuesday, May 3, 2011
Monday, Monday
Today (Monday) started a little rough. Mark started to get a fever about midnight and started to complain about a "heaviness" feeling on his chest. He mentioned the "heaviness" to the nurse right about the time I started to lay down, and this place sprung into action. Within about one minute, the tech brought in a scale to weigh Mark to see if he had sudden weight gain, which might mean he is retaining fluid (not a good thing). Good news is he is not retaining fluid. About 2 minutes after they weighed him, someone arrived from the 2nd floor with an EKG machine. They hooked him up while the nurse gave him pain medicine and checked his heart to make sure he was not having cardiac distress. Good news, his heart is perfect. They immediately called the oncologist at home to tell him what was going on. Dr. Holland, the oncologist this week, said everything was probably fine, but first thing the testing began again. The night without sleep continued at 3:00 am when I was woken up by the wonderful sound of Mark vomiting in his plastic bucket. I got up to help him and the nurse and tech also came in quickly to take care of him. It is truly amazing how quickly they respond to everything here - very comforting to know Mark is being taken care of so well.
Literally before we even woke up, Mark had an Echo of his heart to make sure it was looking good, followed by a chest x-ray and CT scan to make sure he did not have fluid in his lungs, and to check on the status of his pneumonia (the pain could have been his pneumonia worsening). Good news again, the nurse told us his lungs actually seem to be improving - Praise God!!! Once all those tests were over, the day became very routine and kind of pleasant, considering.
The pain went away during the day. Mark ate 2/3 of his lunch, which made me very happy, but none of his dinner (not so happy about that). Then we walked 6 laps around the unit. This is a big deal because Mark hates doing it, and he is supposed to walk 12 laps a day if possible. He did a great job. The laps are important because they help avoid pneumonia, muscle atrophy, and depression. We also had a nice visit from Roger and Mary (Ken's dad and his wife). They came by and gave us a beautiful devotional to encourage us. It was so nice to see them. They are such sweet and caring people. I look forward to the next time we go to Statesboro, and stop by to see them.
Overall, we had a good day. Mark did get a little irritated and feeling down later in the afternoon. He is not use to being sick, and he is tired of being here and feeling the way he feels. He does not want to take the medicine and he does not want to do things like pee in the plastic urinals. I told him tough. These nurses, techs, and doctors are doing everything they can to make sure he stays as healthy as possible and goes home in a few weeks. It is his job to do what they say. He knows all of this, but it is still a hard adjustment, and he is dealing with a lot of emotion right now. I know that. I am just working really hard at helping him stay focused and positive.
To close, I want to take just a moment to thank God for healing Mark's body today. He took the pain and discomfort away from his back and chest. He also gave Mark the strength to eat some food and walk some laps. Each of these are important steps in Mark's health throughout this process, and God is the only one who can give Mark the strength to get through this time. Thank you God for your healing, caring, comforting power during this time.
Amanda
Literally before we even woke up, Mark had an Echo of his heart to make sure it was looking good, followed by a chest x-ray and CT scan to make sure he did not have fluid in his lungs, and to check on the status of his pneumonia (the pain could have been his pneumonia worsening). Good news again, the nurse told us his lungs actually seem to be improving - Praise God!!! Once all those tests were over, the day became very routine and kind of pleasant, considering.
The pain went away during the day. Mark ate 2/3 of his lunch, which made me very happy, but none of his dinner (not so happy about that). Then we walked 6 laps around the unit. This is a big deal because Mark hates doing it, and he is supposed to walk 12 laps a day if possible. He did a great job. The laps are important because they help avoid pneumonia, muscle atrophy, and depression. We also had a nice visit from Roger and Mary (Ken's dad and his wife). They came by and gave us a beautiful devotional to encourage us. It was so nice to see them. They are such sweet and caring people. I look forward to the next time we go to Statesboro, and stop by to see them.
Overall, we had a good day. Mark did get a little irritated and feeling down later in the afternoon. He is not use to being sick, and he is tired of being here and feeling the way he feels. He does not want to take the medicine and he does not want to do things like pee in the plastic urinals. I told him tough. These nurses, techs, and doctors are doing everything they can to make sure he stays as healthy as possible and goes home in a few weeks. It is his job to do what they say. He knows all of this, but it is still a hard adjustment, and he is dealing with a lot of emotion right now. I know that. I am just working really hard at helping him stay focused and positive.
To close, I want to take just a moment to thank God for healing Mark's body today. He took the pain and discomfort away from his back and chest. He also gave Mark the strength to eat some food and walk some laps. Each of these are important steps in Mark's health throughout this process, and God is the only one who can give Mark the strength to get through this time. Thank you God for your healing, caring, comforting power during this time.
Amanda
Monday, May 2, 2011
A Better Day than the Day Before
Today (Sunday) was a pretty good day. The day began with a quick visit from our friends Ken and Abby on their way home. It was so wonderful having them here so I had a chance to go by my house and make sure everything was going well with my home and cat. As I mentioned before, Mark did not eat at all yesterday and I think only part of one meal on Friday. Today, I did have to push him a little so he finally ate a few bites of his lunch and a little less than half of his dinner. I consider this a success.
Mark did have an emotional moment early this afternoon. He expressed his frustration with not feeling well and that he does not want to eat because none of his food tastes good. He said all his food and drink either tastes like nothing or it tastes like his ATRA medicine. Poor thing. We had a pretty good conversation about his feelings and trying to encourage him that this whole experience will be over soon. Though it will not be easy, he will be better and we can move on from this soon.
Shortly after the emotional moments, Mark did begin to eat a little bit of food. I could tell very quickly that he felt a little better with some food in his stomach. Then the best part of the day, we got to see Brodie. Mark had to put on a surgical gown and face mask to go outside of the BMT unit, but we got to see him. He was tired because his GG had to wake him from a nap to come in the hospital. His allergies are acting up because he has spent so much time playing and having a great time outside this week, and he ran out of Flonase (I got him so more yesterday, so his allergies should get better within a few days). Though he was a little grumpy, I just don't care. I got to hold my baby boy for a few minutes and love on him. He gave his daddy and hug and kissed his mask. It was bittersweet because Mark was physically exhausted just from the slight activity of the day and could not interact with Brodie too much, but still that sweet boy was a very welcomed sight. I love him so much.
We have pictures of Brodie and our family and friends up on the walls and on the shelf in the hospital room. All the hospital staff talk about how cute he is, which is true. The pictures are comforting and it is good to see Brodie's smiling face in them. They also inspire getting well as soon as possible so we can get back to that life.
So overall the day was pretty good considering the circumstances. Hopefully Mark will continue to have good days. Good days are much easier to handle than the bad days. Round 2 of chemo will be tomorrow (Monday) morning. Other than that just the normal rounds of ATRA, nausea medicine, numerous antibiotics, antivirals, anti-fungals, and medicine to help control or prevent other side effects, as well as plasma, platelets, or blood as needed (even his nurse tonight was amazed at the number of medications he is taking - it was kind of funny).
Good night all and thank you for your continued prayers and support.
Amanda
Mark did have an emotional moment early this afternoon. He expressed his frustration with not feeling well and that he does not want to eat because none of his food tastes good. He said all his food and drink either tastes like nothing or it tastes like his ATRA medicine. Poor thing. We had a pretty good conversation about his feelings and trying to encourage him that this whole experience will be over soon. Though it will not be easy, he will be better and we can move on from this soon.
Shortly after the emotional moments, Mark did begin to eat a little bit of food. I could tell very quickly that he felt a little better with some food in his stomach. Then the best part of the day, we got to see Brodie. Mark had to put on a surgical gown and face mask to go outside of the BMT unit, but we got to see him. He was tired because his GG had to wake him from a nap to come in the hospital. His allergies are acting up because he has spent so much time playing and having a great time outside this week, and he ran out of Flonase (I got him so more yesterday, so his allergies should get better within a few days). Though he was a little grumpy, I just don't care. I got to hold my baby boy for a few minutes and love on him. He gave his daddy and hug and kissed his mask. It was bittersweet because Mark was physically exhausted just from the slight activity of the day and could not interact with Brodie too much, but still that sweet boy was a very welcomed sight. I love him so much.
We have pictures of Brodie and our family and friends up on the walls and on the shelf in the hospital room. All the hospital staff talk about how cute he is, which is true. The pictures are comforting and it is good to see Brodie's smiling face in them. They also inspire getting well as soon as possible so we can get back to that life.
So overall the day was pretty good considering the circumstances. Hopefully Mark will continue to have good days. Good days are much easier to handle than the bad days. Round 2 of chemo will be tomorrow (Monday) morning. Other than that just the normal rounds of ATRA, nausea medicine, numerous antibiotics, antivirals, anti-fungals, and medicine to help control or prevent other side effects, as well as plasma, platelets, or blood as needed (even his nurse tonight was amazed at the number of medications he is taking - it was kind of funny).
Good night all and thank you for your continued prayers and support.
Amanda
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