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
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