129 days later

It has been 129 days since Mark was first diagnosed with leukemia, and I am thrilled to announce he is DONE with his consolidation treatment. He has battled through fevers, nausea, vomiting, hair loss, weight loss, chest pain, nerve pain, and a seemingly endless list of other side effects in the last 129 days, but now we are both taking a deep breath and enjoying our first day of "freedom". One bummer is Mark was diagnosed with shingles on Thursday (the day before his final treatment) so he is in some pain right now, but his meds are really kicking in and he is doing well now. Thankfully, they were still able to give him his last arsenic trioxide treatment Friday despite the shingles outbreak.

So what's next? Well, Mark gets to take the next few weeks to let all the treatments leave his system and rest before returning to work at the end of September or beginning of October. He is allowed to drive again (I may be more excited than him about this). Actually, he drove today for the first time since April 22nd. He is also allowed to eat whatever he wants again. He has had a salad every day for the last three days. He has had plums, a smoothie, a medium-cooked burger and steak, and probably several other things he has not been allowed to eat since April.

Mark is still taking potassium and magnesium because the arsenic can still drain those minerals, which could cause him some problems. He is also taking celexa for any anxiety or depression, which has not been a problem. He is also taking an antifungal (V-Fend) for the congestion in his lungs that has been there since April. Add the 6 pills a day to deal with the shingles, and he is taking about 11 pills a day, but that is fine with us. Mark also had his PICC line removed Friday, so that increases his ability to play with Brodie and overall freedom. On Monday September 12th I will take Mark to the hosptial for another bone marrow biopsy, those results will probably take a week or so. That is just to make sure one more time that Mark is still in remission before releasing him to return to work. Then he will have a biopsy every 3 months for the first year and every 6 months for the second year to continue to monitor his remission. Other than that, we know he will start taking the ATRA medication again for his "maintanence" phase of treatment which will last 2 years and work to ensure permanent remission.

So just a little reflection from me:
When Mark was first diagnosed, I found myself getting really irritated when people would complain on tv, radio, facebook, etc about whatever minor irritation they were experiencing at the time. Thankfully, I quickly realized I should feel grateful that these people (some I know, some I don't) are not experiencing the same struggles I am facing. Whatever the minor irritation is in that person's life is a big deal to them, and I am thankful for that. I have also realized that so much in life is simply not worth getting upset about anymore. Lots of things in life are out of our control and all we can do is take each event and day at a time and stay positive through it all. Positivity is crucial. Positivity builds hope and I truly believe positivity can change events. Staying positive allows you to have a different approach to life events, which changes everything.

I am incredibly grateful Mark is in remission and the second phase is behind us (just one phase left). I am grateful our little family will be able to return to a semblance of normalcy, though I honestly don't remember what that old "normal" was like. I am grateful God has given me even more experience to build a stronger testimony for the world. I am grateful for all the family and friends who have really shown their love through this struggle. I pray for continued strength as we face the maintanence phase over the next two years and work to restructure our lives and continue to recover physically, finacially, and emotionally from this ordeal.

Crazy Two Weeks

Sorry it has taken so long to post again, the last two weeks have been crazy.

First, Mark started his arsenic trioxide treatments on Monday July 25th. These treatments are pretty uneventful. One problem is the arsenic drains potassium and magnesium out of Mark's body, so he has to get extra magnesium and potassium almost daily which takes 2 hours a bag (and take potassium and magnesium pills daily). Other than that, pretty routine.

On August 1st Mark started week 2 of arsenic, which was the last day I could take him to his treatments because I started back to work on Tuesday. It makes me anxious that I will not be with him each day and know all the details of what is happening each day. Unfortunately, Mark developed a fever on Monday evening so he is now in the BMT unit at Northside. This has been difficult because I have to go to work so I cannot stay with Mark, which would make everything a little easier. Plus I am keeping Brodie at home with me the nights I don't visit Mark and he wants to know where's daddy. Thankfully he accepts my answer of "daddy's at the doctor getting medicine" all hours of the day and without much argument. That does make things a little easier. Actually, one day he asked where daddy was, I gave the usual answer and then he said "you didn't take daddy to the doctor for his medicine", I said no and Brodie said "cause you have to work...to get money". I love that child, he is so smart and in tune to what is going on around him.

Mark's fever has continued to rise and fall throughout the week. The doctors now think the fever is caused by the arsenic rather than an infection because all the tests have returned negative. The concern right now is Mark's cell count. His white blood cells, platelet, and hematocrit levels have returned to normal already after the chemo. However, his absolute neutrophile count is still literally zero meaning his body is susceptible to infection. So, yesterday (Friday) they gave Mark a shot of Neupogen, which stimulates his body to create neutrophiles. In less than 12 hours, his neutrophiles went from 0 to .5 (we are shooting for 1.5). Once this count is up to 1.5, we think they will let him go home even with a fever.

Unfortunately, one side effect from the neutrogen seems to be muscle and bone pain. Mark has severe pain in the back of his neck, lower back, and hips when he stands, walks, sits up, or moves in general. The doctors are working to manage the pain with muscle relaxers and pain medicine. At night, hopefully they will continue to give him oxycodone because it is the only thing that helped enough last night so he could sleep.

So, it has been an interesting week. I got on to Mark for getting sick the one week I had transportation arranged for him. Now I will finish getting transportation arranged for this coming week with the assumption he will be coming home in a couple of days. I know one little boy who will be so happy to see him.

I want to finish with a quick thank you to all the friends and family who are offering rides and food for us as we continue through this last month of treatment, especially our loving church Union Baptist for all the meal offers. I appreciate it all so much. Pray for Mark to get to come home very soon, for the pain to disappear, and for the rest of the treatment to go on without problems.

3 more weeks and we are done!!!

With a thankful heart,
Amanda

One Week Down, Five to Go

I am writing this blog from the BMT unit of Northside hospital. Mark was admitted last night because he had a fever of 102.7 degrees. One good thing is Mark's white cell count is still between 7 and 8, so they were not too worried about infection, but still better safe than sorry. By the time we arrived at the hospital, Mark's temp dropped to 100.4 degrees and this morning it was back down to 97 degrees. The doctor said they think Mark's fever was a reaction to the antifungal medication they started giving him Monday. So now they are discontinuing that specific medication and he will start a different antifungal on Monday when he starts his arsenic treatment. Thankfully, Mark feels like a new person today. His color looks better, he isn't as nauseas, and he is fever free.

The rest of the week went pretty well. Mark's treatment quickly became routine. We show up at the BMT Clinic after a morning of nausea and vomiting, they give Mark nausea medication, start fluids, give him pre-meds and antifungal, and then do whatever chemo is necessary. Thankfully, Mark is done with the chemo part of the consolidation phase. He finished daunorubicin on Wednesday and they unhooked his IV pump of cytarabine on Thursday.

The week did become difficult on Thursday when Mark starting feeling sick and vomiting. he felt miserable and I could not do anything to help except try to make him take his medicine. Again, thankfully he feels better today, though he is still feeling nauseas. At least he finally ate a little today at breakfast (first food he has eaten since about 10:00 Thursday night). Now we are simply sitting in the hospital waiting for them to discharge him. The doctor said he should be able to leave this afternoon, but they are struggling to get his potassium level to normal. After two bags of potassium, it is still low so we are waiting to hear back from the pharmacist about what they want to do next.

So, continue to pray for Mark's side effects to subside so he can make it through the next few weeks as comfortably as possible; pray they are able to get his potassium normalized; and pray we can go home today.

With a thankful heart,
Amanda

A colorful couple of days

These three days are colorful days. Mark is taking one bright yellow IV medication and one bright orange medication, which very quickly turns his urine peach. We knew to expect it, but he said it is still pretty funny.

Mark started his consolidation treatment yesterday. It was a long day that started with us meeting Mark's mom late Sunday evening to give her Brodie because Brodie was throwing up. That's right folks, the day before Mark starts chemo, Brodie starts throwing up. Thankfully, GG (Mark's mom) was able to get him, and he did not get sick any on Monday. At 8:45 am on Monday, Mark and I got to Northside to begin the next phase. The first three days of his consolidation phase he receives 2 different chemo drugs. As soon as we get into the clinic and they draw blood for his lab work, Mark gets a bag of fluids which take about an hour. While he is getting the fluids, the nurse gives him his pre-meds, which help lessen or avoid some side effects of the chemo. His pre-meds are simply benedryl (knocks him out cold), tylenol, and a nausea medication. He also has to put steroid eye drops in his eyes 4 times a day for this entire week to try and avoid eye irritation that can be caused by one of the chemo drugs. After the pre-meds and the fluids, Mark gets an anti-fungal to continue treating a fungal pneumonia-like thing in his lung (he has had this for a few months now). Then the first chemo, daunorubicin, which only takes about 15 minutes. Then just before we leave, they hook Mark up to an IV pump that he has to wear constantly until we come in Thursday morning. The pump dispenses the second chemo, cytarabine, continuously for 24 hours. Then we go home. The first day we arrived at 8:45 and left just after 1:00 (the pharmacist did have to consult with us before he could start the treatment, so hopefully today won't take as long). We are doing the same exact treatment today and again tomorrow.

We have to mone into the hospital Thursday, Friday, Saturday, and Sunday to get the anti-fungal IV medication (which is bright yellow) and some lab work but that is all until Monday. Monday Mark starts his treatment of arsenic trioxide, which he will get Monday through Friday until August 26th.

So, now a little information about the chemo drugs for those of you interested.

1. Daunorubicin - bright orange drug given to Mark using his PICC line.
    - Takes about 15 minutes.
    - Common side effects are:
               - decreased blood count (makes Mark susceptible to infection and difficult to clot his blood)
               - nausea and vomiting (we have meds to help with this, so we will see how bad it gets)
               - temporary hair loss (funny thing is the hair he lost before is growing back baby soft and blond, so who knows what he will look like in a couple of months)
    - Less common side effects:
               - can cause heart damage if taken too long or too much so the doctors are constantly checking his levels and he gets two EKGs a week.
     
***Mark did not have any problems with this medicine last time, just normal nausea, vomiting, minor hair loss, and decreased blood count.***

2. Cytarabine - boring clear IV drug dispensed using an IV pump in a bag over 24 hours.
    - Common side effects are:
              - decreased blood count
              - nausea and vomiting
    - Less common side effects:
              - elevated liver enzymes (they monitor these daily)
              - change in coordination (they monitor daily)
              - pink eye (he is using eye drops to prevent this problem).

3. Arsenic trioxide - clear IV medication
    - Gets Monday through Friday from July 25 - August 26
    - Common side effects:
              - increased white blood cells
              - changes in heart rhythm (monitoring with EKG twice a week)
              - fever, fatigue, headache (we have meds for these)
              - nausea/vomiting (we have meds for these)
              - changes in electrolytes (monitor daily and give him electrolytes as needed)     
    - Less common side effects
              - Muscle pain/weakness
              - Confusion, tiredness
              - Increased liver enzymes (monitored daily)

So that is the treatment plan for the next 6 weeks. Today Mark has had a little nausea and he is currently sound asleep (the benedryl knocks him out). His potassium is a little low, so they are giving him 2 IV bags of potassium (2 hours per bag) in addition to everything else, so I am just going to get comfortable and try to get some homework done.

Pray for Mark to stay well during this time and avoid any infections.
Pray if Mark must have side effects, they are minor and easily managable.
Pray for God to send us those with a servant heart, willing to transport Mark to and from the hospital for his treatment when I have to return to work on August 2nd.

Anyone wanting to provide some transportation or bring meals to our home, feel free to call, text, or email me
678-975-4954
kashepherd1@gmail.com

With a thankful heart,
Amanda

Remission!!!

I have waited 77 days to say this "Mark is in remission!!!". It feels as good as I hoped it would feel. So what does 'remission' mean? First of all, Dr. Soloman, the oncologist, said Mark is in complete remission meaning they did not see any leukemic cells in all of the extensive tests they ran on Mark bone marrow. This is wonderful news. Now that we have finished the induction phase and reached remission, Mark begins the consolidation phase. Basically, the consolidation phase means more treatment to completely kill off any stray leukemic cells that they could not find. This phase is a critical part. I have read lots of research that shows many patients who skip the consolidation and maintenance phase (that's the last phase) have a relapse that could have been prevented. So consolidation greatly increases the chances of our ultimate goal "permanent remission" which in my mind equals "cure".

So, what is in store for Mark during the consolidation phase. First of all, as long as Mark stays well and has transportation to the hospital each day, the whole phase can be outpatient. YAY!!! Secondly, Mark will go in a couple days to get a new PICC line (they took the other one out about a month ago just in case it caused the infection that made him sick in June). Just like the induction phase, the PICC will be used to give Mark all his IV medications and take any blood tests that are needed, so he does not have to get jabbed every time. Probably the first of next week, Mark will get 3 days of chemotherapy. The two chemo drugs are daunorubicin (this is the same chemo he had in the induction phase) and cytarabine. After the 3 days of chemo, he will get a few days off from treatment (but good chance we will still have to go to the hospital daily to have lab work done.

After a short break (just a few days), Mark will go in 5 days a week (Monday thru Friday most likely) for a daily dose of arsenic trioxide. He will continue the arsenic treatment for 6 weeks. Once he completes the arsenic treatments, the doctors will evaluate how he is doing and it is likely he will be approved to drive and return to work. He was really excited to hear that he might be able to return to work in about 2 months, seriously really excited. This will be the end of the consolidation phase. At that point, Mark enters the maintenance phase, where he will take the same ATRA pills he just finished taking. This time he will take the pills for 2 weeks, every 3 months, for 2 years. That sounds easy after overcoming the induction and consolidation phases.

So, obviously we are all ecstatic to know that Mark is in remission. He is responding to all the treatment exactly how the doctors want him to respond. The upcoming chemo treatment will drop Mark's cell counts back to zero. This means he will be neutropenic again and extremely susceptible to infection. Hopefully, any side effects can be easily managed and infections avoided so Mark can stay at home during the treatment. He will also have probably daily trips to the BMT clinic at Northside for lab work and to receive any medications or blood products he needs - since his cell counts will drop, it is pretty much guaranteed that he will need some blood products such as red blood cells and platelets.

At this point, I am just grateful for the blessing of remission and ready to take on the consolidation phase. I again thank each of you for your love, support, and prayers throughout this journey. Please continue to pray for Mark's health. It is so important that his body copes well with the treatment. We pray to stay outpatient, which means he has to avoid germs (good luck with a 3 year old and an educator in the house, but we will certainly try). Pray for continued remission and eventually permanent remission. Pray for strength and courage for our entire family to face the coming challenges with the same tenacity we faced the first challenges. It is important to remember that all is for God's glory, and I am so thankful to Him for all the blessings in my life.

With a thankful heart,
Amanda

Biopsy Day

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

First Day of Chemo

Today was Mark's first day of chemo. Thankfully it is literally painless at this point. A nurse slowly pushes a syringe full of red liquid into Mark's PICC line. Apparently any side effects will start in a few days once all his cell counts drop.

The real story of the day is headaches, nausea, and vomiting. Mark woke me up at 8:00 this morning needing me to grab the trashcan because he had to vomit. He continued to feel nauseous for several hours. The nurses are now giving him a rotation of nausea medicines ever three hours in an effort to stop the nausea before it starts. They are also working with his pain medications in an effort to ease the headaches without causing too much more nausea. Unfortunately, since he felt sick for the last couple of days, Mark did not eat anything today. Hopefully he will feel better tomorrow and eat at least a little bit.

The other thing that happened today is Mark started having a "smokiness"in his right eye. His eyes reacted normally, but he saw the smokiness. The oncologist called for an opthamologist to see what might be causing the problem. The opthamologist said it looks like a small hemorrhage caused by his low platelets. The oncologist decided to give Mark platelets to increase them so the hemorrhage should correct itself without any damage to the eye. They are also starting cough medicine regularly to control his cough in order to decrease the chances of causing similar problems.

Our friends Ken and Abby came into town to see us. Ken stayed with Mark today, while Abby and I went to my house. We started a load of laundry to have clean clothes. Then while the laundry continued, Abby washed my dishes and cared for my plants, while I cared for the cat and sorted through the mail (which took a while). Then we both worked at basic clean up stuff like putting away clean clothes, vacuuming, and taking out trash. It is great to know that when I do make my way home, the house is in good shape and I don't have to worry too much about it now. I do have to do a deep clean before Mark gets home, but that will come later.

It was great to get out for a little while, and I managed it because I knew Ken would keep me updated, which he did. A great big thanks to both of them for everything they did today to care for and serve Mark and me.

Prayer requests:
1. Mark's headaches, nausea, and vomiting disappear.
2. Mark begins eating at least a little.
3. Mark gets energy to walk around the unit some in an effort to avoid muscle atrophy and additional pneumonia issues.
4. If Mark must have side effects, keep them minimal and easy to manage.
5. Strength and continued positive attitude to get through this part of the treatment.

With a grateful heart,
Amanda

Acute Promyelocytic Leukemia (APL)

Today (Friday April 29) we got the official information we have been waiting for, Mark's diagnosis. Mark has Acute Promyelocytic Leukemia (APL). Basically, one day while his white cells were making new white cells bad white cells was made due to a chromosome abnormality in the 15th and 17th chromosome. At that point, the bad white cells could no longer mature, which means they would not die. Therefore, Mark has lots of young, bad white cells in his body that won't work the way they are supposed to and also won't die.

According to all the doctors, if you had to choose a leukemia to have, this is the leukemia you would choose. According to the Leukemia and Lymphoma Society literature I am now reading instead of my homework, patients with APL are among the most frequently cured. The oncologist today, Dr. Holland, said about 90% of APL patients achieve remission, which is the best percentage of all the leukemias. The doctor did make sure to let us know that not all APL patients get remission, but the odds are definitely in our favor, especially since Mark is young, it seems we caught it early, and his body is healthy otherwise.

So, let's talk treatment. Turns out, according to the doctors, the treatment for this leukemia is generally a little better than the other leukemias too. Mark started taking ATRA (All-trans retinoic acid) on Wednesday evening. ATRA is only used with APL. The ATRA is basically a REALLY hyped up Vitamin A pill. He takes 5 ATRA pills, 2 times a day. ATRA causes the immature, bad white cells to mature so they will die and therefore decreases the number of leukemic cells in his body. As of right now, he will take these pills for 60 days, everyday (today is day 3).

The second part of treatment is chemotherapy. Mark starts his chemo called Daunorubicin at 10:00 in the morning. He will get chemo tomorrow (4/30), Monday (5/2), and Wednesday (5/4). This will wipe his system clear of the good and bad white cells, and practically everything else in his blood like red cells and platelets. Then his system will gradually rebuild with good white cells. The whole cycle is supposed to take about 4 weeks. Once his system rebuilds and his white cells are at an acceptable level, Mark gets to go home. He will continue to take the ATRA for the full 60 days (June 25th to be exact). Then we move into the next phase, which is outpatient and we will learn more about it later.

Now, the doctor did inform us of side effects such as severe headaches, nausea and vomiting, increased chance of blood clots, increased risk for spontaneous bleeding, temporary hair loss and more severe, yet less likely side effects that we will only address if we have to address them. Mark is having pretty severe headaches, nausea, and some vomiting, which make him feel pretty miserable at times. The nurses are very responsive to treat his symptoms and side effects and consult with other nurses and doctors when they feel it is necessary.

So, we are staying positive. We are blessed because Mark's diagnosis and treatment are the best options we could have asked for under the circumstances. We are in a great hospital with kind, caring, knowledgable doctors, nurses, and techs. We have wonderful family and friends who are really stepping forward and practically begging to help us in any way possible. Thank you so much for your prayers and servant hearts during this trying time truly a witness to those around us. It will be very stressful and difficult at times for the next several months, but God will pull us through it all, and we will be better and stronger in the end because of this experience.

Amanda

P.S. Many of you have asked about donating blood. Dr. Holland, the oncologist said blood donations are great but they really need platelet donations. Platelets only stay in your body about 10 days, so when you  have trouble making new platelets due to something like leukemia, you need platelets very often, and it takes several units of platelets to help an adult. Also, platelets only last 5 days after being donated, so new platelet donations are always needed. Finally, if you go to a blood donation center and donate blood, they separate the blood into platelets, plasma, and red cells and get a little of everything. If you donate platelets specifically, you get all your other stuff back into your system and they get lots of platelets. Anyway, if you are interested in donating to the pool of platelets that they get Mark's platelets from call Atlanta Blood Services at 404-459-8744. This is a simple, free way you can help Mark numerous times during his treatment.

Our New "Normal"

Last night was not exactly restful. Mark developed a fever about 2 am so they had to give him tylenol. Since he could not eat or drink after midnight to prep for the bronchoscopy they had to get permission for a little bit of water to take the meds, which the doctor approved. They also gave him some pain medicine because his back hurts really bad from the bone marrow biopsy and his morning dose of ATRA chemo pills so he would not get off schedule (they are due at 6 am but he could not take them that close to the procedure).

At 9:00 am Mark left for his bronchoscopy. He was nervous because they will sedate him and he has never had a procedure like this or any other procedures for that matter. The procedure went well. He does not remember anything from it. It will take several days to get the results, so we continue to wait. He felt really nauseous after the procedure and got sick a few times. He also developed a fever at about 3:00. The nurses stayed right on top of everything and stayed in contact with the oncologist to let him know of all the symptoms and side effects because some of the side effects of his medications can be serious.

Just to give a run down and to give everyone an idea of our new routine: At 3:00 today Mark had a fever with nausea, a headache, and anemia due to low red cell count. Once the fever dropped to an acceptable level, the nurse gave Mark plasma and red blood cells. The plasma helps his blood clot faster and the red blood cells help the anemia he has due to the leukemia and all the blood the nurses have to take for the lab tests twice a day. He had platelets this morning to increase his platelet count before the bronchoscopy, so they are looking fairly good right now. Once he woke up from his 5 hour nap, we walked 1 1/2 laps around the BMT unit (12 laps is a mile). He thought he could make 2 or 3 laps, but the IV thing started beeping cause it needed to charge. The doctors want him to try and walk 1 mile a day (not necessarily at once, just over the course of the day). So that is our new routine at this point.

I spoke to some friends today about how weird it is that he is always one of the healthiest people I know, and now he has leukemia. He hardly ever gets more than a slight cold due to allergies, much less anything major. Of course, the reason we know about the leukemia so early is an always healthy man suddenly go pneumonia for no apparent reason. Just goes to show, always listen to your instinct (or your spouse, whichever is loudest) and if you even think about going to a doctor...go. If nothing is wrong at least you know, but what if something bigger than you could imagine is going on. A nurse came in earlier talking to Mark, asking him the usual questions and I commented "he is a very healthy person, he just has leukemia", which is true and makes this whole experience even more surreal.

I will admit, today was a rather emotional day for me. Mark was asleep practically all day. For several hours he had a fever and some other symptoms that the nurses were watching very closely and talking with the doctor to make sure he was not developing some of the severe effects of the ATRA medication. It is incredibly hard to sit back, completely helpless and watch someone you love so much feel so sick. It is especially difficult because it happened so quickly. It is also difficult because I know this is just the beginning. This whole experience will get harder before it will get easier, but I know God will help us through it. There are literally hundreds, if not thousands of people across the world (I know at least 1 person in Afghanistan is praying for Mark - thanks Dale) praying for us. I can feel the prayers and I am incredibly grateful.

Last thing, we do not have any results from the biopsy yet. The doctor said it might be tomorrow, or it could be over the weekend, possibly even Monday. All the information they are trying to gather to get a complete diagnosis takes a while to get from the pathologists due to the complicated tests they have to run. I will be sure to post the official diagnosis and treatment plan as soon as we know one.

Thank you all so much,
Amanda

Busy, Busy, Busy

Hey folks. Today was busy to say the least. I slept til about 10:00; Mark was woken up throughout the early morning for lab work, vital signs, and plasma. The day began with Mark getting a CT scan, which showed Mark has some pneumonia in his left and right lungs. Therefore tomorrow at 9:00 am Mark will get a bronchoscopy (basically they knock him out, put a tube up his nose and into his lungs to suck out some stuff so they can send it to a lab to identify the cause of the infection). If they can identify the cause they can give him medication to specifically target the infection.

After the CT scan, Mark had an Echo. This was basically an ultrasound to make sure his heart is healthy before starting chemo. Then came the bone marrow biopsy (BMB). I was able to stay in the room this time, though I had to stay seated on the couch so I would not pass out (liability issue). Though it was painful at times, especially when numbing the area and extracting the marrow, this time was much better than last time. Mark also seems to be in less pain after the fact too. They got a little marrow (last time was a dry tap) and 2 slivers of bone, which looked much different than I expected it to look. We are expecting the results tomorrow to confirm the diagnosis and identify the subtype so we can start the treatment plan.

Literally as the nurse practitioner (NP) patched up his back from the biopsy, and ENT came in to clean his ears to avoid any possible infection (Mark naturally makes lots of ear wax which causes him problems all the time). Before he could get out the door good, two ladies came in to put Mark's PICC line in.

A PICC line is basically a long-term IV that feeds through a major vein and dumps pretty much right into his heart. Sounds painful, but actually he said only the numbing stuff hurt and he did not even notice the rest of it. The ladies were hilarious. We all joked together and laughed and really had a good time while they did their job. Mark is excited about the PICC because it greatly decreases the number of times the nurses will have to use a needle to draw blood. They will now use the PICC for chemo, IV meds and fluid, CT contrast, and to draw most of the blood tests they need. They also removed the other to IVs Mark had so he has more use of his arm now too.

The oncologist came in and pretty much said hi and let us know that there is not a whole lot to tell until we know the subtype. He did explain a little bit about the upcoming process, but said most of the details rely on knowing the subtype. Our next visitor was the pharmacist. He was also really nice. He explained this medicine called All Trans-Retinoic Acid (ATRA). Basically it is a mega does of Vitamin A. They are starting him on ATRA now in case the BMB confirms the subtype they think it is (I will let you all know tomorrow once we have the results).

The rest of the day consisted of a few very welcomed visitors. Mark's cousin-by marriage, Mary came by to visit and get some paperwork. She is watching Brodie for a couple of days and Brodie will go to daycare with her son, so she needed some paperwork filled out. Also two of our friends from church came to visit (thanks Paul and Lee, it was great to see you guys). We had a great time swapping stories, updating them on what is going on, and just enjoying the fellowship. Then Mark's cousin Brian and his wife Nema came by. Again great fellowship. It was great getting to see them because we rarely see them though they don't live very far from us.

As you can tell, it was a long and eventful day. We are both in really good spirits. I figure, it does no good to be negative or feel bad for myself. Everyone at Northside is super nice, super helpful, and answer all our questions no matter how many we ask. They are all taking great care of Mark, and making sure I have anything I need within their power. This is the best place for leukemia treatment and I know Mark is in good hands.

Through all of this, I am actually finding peace right now. It must be God's hands on me because the peace certainly does not make sense. I have had so much anxiety the past month, I guess finally having a diagnosis and taking the steps to fix it gives me comfort at this point. I know things will get stressful and many tears are ahead, but right now I am holding onto the peace I have and taking everything one day at a time. Again, thank you to everyone offering help of all varieties. Every little thing is appreciated; actually I am quickly realizing that simple things we often take for granted are the things we often need first, like clean clothes. I am truly blessed to have the friends and family I have and I know I will continue to lean heavily on each of your in the upcoming months.

With a grateful heart,
Amanda

The Day the World Stopped Turning

My whole world was turned upside down today. At approximately 10:30 am a doctor told us that Mark has acute leukemia. "My husband has leukemia", I truly never thought I would say those words. The emotion is indescribable. We cried - a lot. Then we tried to think positively. Then we cried some more. Then we had to tell family and friends, and we cried each time. Each time we said the word "leukemia" it stabbed like a knife, and made us cry again. Telling our moms was by far the hardest part. They were devastated, needless to say we all cried. For those who don't know, my stepfather died two years ago from leukemia, so this is hitting very close to home. Also, Mark's dad died a year ago from pneumonia, so we are still reeling from that only to have this happen.

Once we got the diagnosis, everything kind of jumped into warp speed. Very quickly Mark was transferred to Northside hospital to begin treatment. Northside has a Leukemia and Bone Marrow Transplant Center. We now reside in the Bone Marrow Transplant (BMT) section. The entire wing was built specifically for leukemia and BMT patients. The rooms have a filter system to keep all the hallway air in the hallway, and all our air in our room. To enter the wing, you have to call the nurses station then press a button to open the doors. These doors lead to a small room. In this room you have to put a gown and shoe covers on and wash your hands very thoroughly. Once you have done this and the doors have closed behind you, you push another button to enter the BMT wing.

Anyway, tomorrow they are going to do another bone marrow biopsy and CT scan. The CT scan is to check for blood clots (I think) - the type of leukemia the preliminary tests show increases Mark's chances of developing blood clots, so they have to keep an eye out for them. The biopsy is to confirm the type of leukemia he has so they can finalize the treatment plan. I will be sure to update everyone.

So, today has definitely been emotional and the next few months will be a challenge, but we are determined to face them head on and beat this leukemia. We know God can move mountains and he will heal Mark's body. We will all rise from this whole experience with a greater appreciation for life, family, friends, and God.

Thank you to everyone for all your love and support.

Testing Day

So today was testing day. Mark was woken up at 5:45 this morning by nurses wanting to take his blood for the viral tests they want for the infectious disease doctor. Then came the bone marrow biopsy. They gave Mark some IV medicine to make him relax and kind of sleepy so he would not care about the pain and discomfort of the procedure because you cannot numb bone. They also put some numbing agent to numb his skin for the incision. Unfortunately, Mark seems to be resistant to these types of things because he felt EVERYTHING.

A bone marrow biopsy is basically the doctor makes a small incision and inserts a very small pointy tube into the incision and into the bone. Once in the bone, the doctor suctions out some bone marrow (the fluid in the bone that makes your blood cells). Then the doctor removed a small sliver of bone about the thickness of a toothpick. Mark described it like a person taking a jackhammer to his back - painful.

So after the procedure which took about 30 minutes, the sedative kicked in and Mark slept practically comatose for about 3 hours. Once he woke up, the nurse gave him 2 Loritab for his back pain and he knocked out for about another hour. Now he feels better though his back really hurts. The doctor said he will hurt more tomorrow, but should feel better very soon.

Then a dermatologist came to visit because Mark has a strange blotchy redness that randomly comes and goes and started just before this whole situation started. Basically he has stumped the dermatologist, but they did a skin biopsy to see if they can figure it out. This was much easier than the other biopsy. These results will take several days, possibly a week.

As far as updated information, we really have nothing at this point. We are thinking we will have preliminary results from the bone marrow tomorrow which will hopefully rule out leukemia and other severe causes.

I admit, it is funny that Mark keeps stumping so many specialists because they just don't know what to think about his symptoms. Hopefully we will figure out something soon so we can start any necessary treatment.

Welcome to the my world!!!

Hello friends and family. Apparently blogging is very popular, and I thought it could be a great way to get info to all of you at once. Assuming I keep up with this blog, I intend to use it to share family stories, the good, the bad, and the whatever else happens.

If you have been following the current events of my little family lately, you know that Mark is currently in the hospital with low white cell counts. This has definitely been a rollercoaster ride. For those who do not know the happenings or are missing details, here you go.

Basically in March, Mark started coughing alot, which became really annoying because he is a loud cougher. Anyway, I finally convinced him to go to the doctor Friday March 25th. He was diagnosed with bronchitis. He took his meds and started feeling better. Saturday April 2nd he started feeling bad again, and by Monday April 4th he felt so bad he went back to the doctor. The doctor said he developed pneumonia and put him on a new antibiotic. Tuesday April 5th, he had lots of pain and vomiting, so Wednesday April 6th, he went to the doctor, and she sent him to the hospital for 24 hours of observation, fluids, and antibiotics.

At the hospital, they decided to keep him for 48 hours. Then blood tests showed his white cell count and platelet counts are low - really low. For those who are unfamiliar, white cell counts should be somewhere between 4.0 and 5.0 - Mark's bounce between 1.3 and 1.8. Basically this means his body cannot fight any infection, even a simple cold. So, that new information began a series of antibiotics and blood tests trying to find a viral cause. All the tests came back negative. The doctors generally agreed it was the pneumonia causing the low WBC and sent Mark home with a WBC of 1.7 and antibiotics on Tuesday April 12th (yes, 24 hours turned in to 6 glorious days of CT scans, chest x-rays, and daily 6 am blood tests).

Friday, April 15th Mark had a followup and his WBC was 1.4. The doctor greenlit us to go on vacation for Spring Break to Panama City Beach with food restrictions, additional antibiotics, and multiple daily temperature checks. We had a great time at the beach for a week with Brodie, playing in the sand, eating at Margaritaville (3 times cause Brodie loved the airplane in the restaurant), and just hanging out as a family. By the time we returned to Atlanta on Saturday April 23rd, Mark's temp was bouncing between 99 and 101 degrees so we came to the emergency room.

As I type this, we are sitting in the hospital - again. Mark's WBC is 1.5ish. Tomorrow's exciting plans include lots of blood tests for a variety of viral infections and the delightful bone marrow biopsy. The bone marrow biopsy is pretty scary. First of all, they will basically stick a needle in Mark's lower hip bone and remove some of the fluid (that's the marrow) and a small sliver of his bone (both of which will replace themselves). Then the pathologist will examine the samples to see if they see any concerns that may equal leukemia, lymphoma, and an assortment of other not-so-great problems with his bone marrow. These results will help identify or eliminate possible causes for the low WBC, and may help guide any needed treatment. We will get preliminary results after about 24 - 48 hours, but any additional testing may take a few more days.

So, that is where we stand now. We are both nervous about the upcoming tests and possible results. We are more than ready to return to our normal life. We are seeking as many prayers as possible, and we are enormously grateful for the love and support so far.