Hospital Update – Going Home

Daniel has been diagnosed with Sweet’s Syndrome. It is common with patients with blood disorders and those who take medications that boost production of white blood cells. Daniel falls in both categories. He is responding amazingly well to the steroids and I could see an improvement in the wound in a matter of hours, and it looks even better now. (If you google Sweet’s it talks of little red bumps, his lesions were a bit different. We keep joking that he always has to have the rarest things). He is still in pain but knowing what is going on and that there is an treatment plan has been great for him! This is not a chronic issue. They explained it is something that may pop up again later if there is a big change in his blood or immune system. Which can actually be the first sign that something is changing for some patients.

Sweet’s Syndome is a diagnosis of elimination which is why it took so long to determine. Also, it is rare. One doctor said he thought it was Sweet’s but he hadn’t seen it in over 20 years and it did look atypical from what you usually see. The researchers in the group will enjoy this, his case will be presented at a conference and possible paper.

We have a treatment plan in place which includes steroids.His immune system will be lowered from the steroids so we will have to follow some protocols to keep him from getting any infections but he should be healed up from the Sweet’s in a few weeks.

Then the focus will go back to figuring out the next steps for his MDS. More than likely they will do another bone marrow biopsy so they can determine what his MDS grade is, and then we will talk through all the options for treatment. Prior to the Sweet’s Daniel had been having increasingly worse weeks in terms of of his anemia and the MDS in general. The MDS also started affecting his white cells and platelets. For now we are taking it one day at a time.

So after 19 days in the hospital, 20+ doctors, countless bags of antibiotics, a couple dozen nurses, and lots of hospital food WE ARE GOING HOME TODAY!!!

God has truly blessed us in so many ways during all of this, providing for us in ways we didn’t know we needed!

Thank you for all the thoughts and prayers!

Hospital Update 10

13907188_10100846948560489_1720185420920199695_nDaniel made it to the drink machine today! He got a sweet video for making it to the nurses station yesterday. The nurse today said she would do the Charleston if he made it to the drink machine. She’s gone to YouTube how to do it. So thankful for staff that are encouraging! Everyone in the halls cheered him on even nurses that have never had him as a patient and the hostess that does his meals. I thought yesterday the wound was looking better but was worried it was wishful thinking. Both doctors said today it is looking way better!! Thank you for all the prayers and encouragement!

Hospital Update 9

It looks like we are getting closer to answers. They think instead of this being a true infection it is more an autoinflammatory response. They are thinking Sweet Syndrome or Pyoderma gangrenosum but leaning toward PG. Both are very common in people with blood cancer. Simple explanation, the white cells attack for no reason and painful blisters form as a reaction to the attack. They are going to start steroids today and watch over the weekend. If they are correct and it is either of these there will be improvement. If it is Sweet he will heal in a few days. If PG it will be months. Once they know which one and get the meds figured out we can come home and he can work on getting better there. Steroids decrease the immune system but it’s also the quickest and best way to treat him right now. Please continue to pray for him!

Hospital Update 8

They have narrowed it down some. The biopsy from Monday showed a low level of bacteria. It’s possible it was just on the surface but they are going to make sure the antibiotics cover it. There was also a high concentration of Neutrophils in the sample which could indicate Sweets Syndrome. Sweets syndrome is more common with hemotological patients, neutropenic patients and those on neupogen. Daniel is all three. It’s treated with a steroid so they want to be very sure that is what is going on before starting treatment. Steroids are rough on the immune system which his is already very compromised.

Oncology here will be working with Infectious Diseases and possibly Dermotology to verify. They are also going to talk to his primary onocologist. He is getting is normal blood transfusion today. He is still in a lot of pain and just feels crummy. Thankfully he has not had any high fevers but did have a couple of low grade ones last night.

We appreciate your thoughts and prayers more than you can ever know!

Hospital Update 7

They did a biopsy of the abscess yesterday to try to determine exactly what is causing the infection. Should know in a couple of days. He had a fever spike last night, it may have been an effect of the biopsy but he has been spiking one every other day for a few weeks now and they aren’t sure why. He has to be fever free for 24 hours before they consider a release and then he will have a least a month of antibiotics. His MDS just makes it harder for him to fight any infection. The doctors are all fantastic and want to make sure he is not release prematurely. We appreciate your prayers. Right now it is a “waiting game” as one of the doctors said. God continues to show us His love every day and I am so thankful for how He is blessing us!

Hospital Update 6

All the doctors have come in for the day. He wound is looking better. No more fevers! They want to monitor him a few more days and then release him. They said to plan on sometime next week. He has an appetite again so he is building strength. All the nurses are noticing the improvement because he is more talkative. He has actually made a quip or two. (It has been a couple of weeks since that last one which is just not Daniel). He even ordered orange sherbet with lunch and his pain is a 5 out of 10 today, the least amount of pain he has been in for over a week. Still a ways to go but the improvement is very encouraging. Unless something changes I won’t do updates for a next few days because it will just be sitting and waiting while the meds do their thing. Thank the Lord he is doing better! We are so thankful for all the prayers and for the nurses and techs here at Emory who have made his little room feel as comfortable as possible.

Hospital Update 5

All sources of infection outside of the abscess have been ruled out. There is not a pocket of infection to drain so no surgery is needed. They are giving him three types of antibiotics to fight the infection. They will monitor him for now and see how it responds. If needed they will biopsy the skin to figure out what exactly is going on. Daniel’s hemoglobin was very low (5.4). The average hemoglobin is about 14 and his normal is 7. With it being “critically low” it was causing a lot of symptoms. They have given him 7 units of blood since last Thursday. While he is still in pain from the abscess, he is not having all of the other issues he was having because of the hemoglobin. We hope to know this weekend what the game plan is moving forward. Right now, if he responds well to the medicine and they know it’s the right medicine, they will release him to go home and we will get a nurse to come in to give the IV meds. We appreciate all the prayers! He is looking at his phone for the first time in over a week so if you have contacted him and didn’t hear back that is why. It is nice to see him chatting and smiling more today. Praise the Lord for how He blesses us!

Hospital Update 4

They have ruled out other possibilities of infection. The infection is coming from the abscess area. He has been on heavy duty antibiotics for a week. They are adding an antifungal to see if it responds. In the meantime they will CT the area to see if there are areas of pus. If so they will operate again to drain it. If not they will see if he responds to antifungals and do a punch biopsy of the skin to make sure nothing dermatological was overlooked. Once his is on the right path for healing they will release him and continue to get the IV antibiotics at home.