Hello LLS friends. With all of Dean's recent hospital stays & multiple trips to Houston, things have been unbelievably busy for me at home and at work, so I apologize for not posting any sooner. Here's the latest journal entry that I posted to Dean's Caringbridge site on Monday of this week:
Dean & I were in Houston on Monday, Nov. 14 for a follow-up CT of his lungs and appointment with Dr. Andersson, his transplant doc. I was actually afraid we might have to go sooner than that because Dean had fever of 102.7 and chills on Friday, Nov. 11. I went to work that morning for a little while to get things lined up to probably be gone for another week, and then came home and packed our suitcase. While I was getting ready Dean's temp started gradually going down so we decided to wait and see. By Friday evening his fever was gone completely so we just waited and saw Dr. Andersson on Monday as scheduled. The CT of his chest showed pneumonia in the upper lobes of both lungs again so Dr. Andersson wanted Dean to have another bronchoscopy. Unfortunately, the earliest they could do it was Wednesday. After the bronch, we saw Dr. Andersson again and he doesn't think the pneumonia from 2-3 weeks ago ever resolved completely so he put Dean back on 2 oral antibiotics (Avelox & Azithromycin) for 3 more weeks. Then we'll have another follow-up appointment on Dec. 7. It'll take several days for the cultures from the bronch to grow anything so if something new grows that Dean isn't already covered for with the antibiotics and IV antifungal he's already on Dr. Andersson will make adjustments.
While in Houston Dean also had a regular scheduled bone marrow biopsy, and by Wednesday the preliminary results were back showing clean results....no leukemia cells....Praise the Lord!!! Dr. Andersson congratulated Dean on reaching the 5 year milestone since transplant and reminded of us the positives such as good blood counts (good for Dean at least), being on no immune suppresants, and no active GVHD. We're so very thankful that Dean is not still battling the leukemia itself or the horrible problems that GVHD can cause, but all of the recent hospital stays have really taken a toll on Dean & I, both physically & mentally. Hopefully next year will be a better year!!!
After coming home, Dean had a low grade fever on Thursday but at least we know the pneumonia is what's causing it. He's also had pretty extreme pain from the pleurisy again. The tough part is there's not really anything the docs can do for it. Dean really doesn't want to take the narcotic pain meds unless he has to, and anti-inflammatory meds such as Ibuprofen is what they told Dean to take for it when he was discharged from the hospital earlier this month. He's been taking Tramadol and Ibuprofen to hopefully reduce the inflammation around his lungs but I worry about the Ibuprofen because it can be masking fever from the pneumonia. The Tramadol & Ibuprofen really don't help much so he's still in quite a bit of pain. If anyone has any ideas or suggestions of treatments for pleurisy that might have worked for you, we'd certainly love to hear it.
Please continue to keep Dean in your thoughts & prayers. As I mentioned, this has been a really tough few months for him because he feels like he just isn't ever going to get any better. Any words of encouragement for Dean would be greatly appreciated. Thanks again to everyone for all of your love & support and thoughts & prayers. Love always......Betsy
My only thought is that maybe you could delay the Ibuprofen until you have an accurate reading of his temp before you he takes them. Maybe try to let them wear off as long as possible. That might help avoid masking any fever.
The only thing I can think to say is to remind ya'll that holding your own can be the same as making progress if the current is flowing against you. He hasn't held on this long to stay where he is. He will improve. I believe that.
I'm keeping both of you in my thoughts. I can't imagine the frustration you both must be feeling. I'm sure it's tough for him to imagine an end to the Houston trips. He's fought so hard for five years, I have to think there's going to be a resolution long term. It's great that the bmb was clean!
I hope you all had a wonderful thanksgiving betsy and you all managed to stay home.
Stevens oncologist once compared avelox to using a canon on the bugs causing pneumonia. So i hope that canon blows away the pneumonia and dean can have a quiet, event free, stay at home Christmas.
I can't even imagine how frustrating this has been for you both, we had alot of sickness and appointments last year, the stress just made me feel like i wanted to scream. Yet it came no where close to what you all have been through. My fingers are crossed that this is your turning point and you all can have some peace. .
So glad to hear of the bmb results. You all take care.
Hi LLS friends. Well Dean & I have had quite an exciting week. We went to Houston on Monday for a follow-up CT of his lungs and appointments with Dr. Andersson (his transplant doc) and Dr. Chemaly, the Infectious Disease doc on Tuesday. The good news is that the CT showed Dean's pneumonia in both lungs is much improved from when we were there in mid November. Dr. Andersson and Dr. Chemaly agreed that Dean should continue the 2 oral antibiotics (Avelox & Azithromycin) for 10 more days as well as the IV caspofungin until they get the results from blood work done to check the level of the oral antifungal med he takes (Posaconazole) to make sure his body is absorbing it at a theraputic level. If it is, then they'll discontinue the other meds and Dean will return in mid-January for a follow-up. At that time, they'll do another CT and hopefully remove the PICC line.
We were just getting back into town Tuesday evening about 9:00 p.m. when our son Jerry called to tell us his wife Mandy was in labor and they were headed to the hospital. We had just gotten into town so we went straight to the hospital, and Sarah Renee was born 3 hours later at 12:08 a.m. on Wed. She weighed 7 lbs., 8 oz., and has beautiful red hair just like here big brother Jonah! This was another wonderful blessing for our family to have Dean still here with us to share in more special memories, and I'm so glad Sarah (and Mandy!) decided to wait until Grandaddy & Bebe made it back home!!!
Like any proud grandma, I've posted a couple of pics for everyone to see. Thanks again to everyone for all of your love & support.....Betsy
Hi LLS friends. Well Dean & I have had quite an exciting week.
That line usually scares the hell outta me but it all sounded like good news. The therapeutic boost of grandchildren cannot be oversold. My first thought on dx was that I wasn't leaving my grandkids without a grandfather (they have others but those guys are completely checked out).
Beautiful kid, and happy grandpa. What more can you ask for?
Would you please tell your husband to knock this nonsense off?! I'm bored to tears with it, I can't imagine how you're feeling about it.
You've actually been on my mind a lot lately. I've been hoping things had gotten better and there was no need to post. I guess that was the case, but things got sticky again.
You know, I don't know if you ever mentioned that Dean has Busulfan Lung but I was wondering about it while reading your latest. I couldn't understand why he was having so much lung junk. Now I know.
I've got to believe there's a better future for ya'll here on earth so I'm not going to accept this is your life from now on. I'll just sit over here being a mule while ya'll make whatever accommodations you need to..Just know I'm here doing that...it's not much work, I'm a belligerent most of the time anyway.
Please keep us posted and give Dean my regards. I hope this is a shorter stay than he's had before.
Betsy, I haven't been able to post much, but have been following Dean's saga and I was among those hoping that "no news" was "good news". And it seems that it was...I hope that the team at MD Anderson can get Dean turned around once again and you'll be back home with him again very soon. The pulmonary vest sounds interesting - I hope that it's something that might prove to be helpful.
Sending best wishes out for a quick turnaround and a quicker trip back home!
Hi Betsy! I hope Dean gets approved for the vest. It's sooo much easier than the alternative - you learning how to do percussion and vibration. Having to do P/V manually takes up sooo much time (for both the giver and the recipient). You're so fortunate in having an expert in the family.
I'm so sorry to hear about the Busulfan lung issue. That's a real bummer! I can only imagine how Dean feels! (I can identify on one level: I've been hospitalized with pna twice - absolutely nothing to do with leukemia - and also for asthma.) Hopefully, one of these days the docs at MDA will come up with the right drug combo to finally kill off the pna bug.