It’s me again, Wade. We are one week from transplant day today. They tell us that things begin to improve 10 days to two weeks after transplant. I think we have made some progress, but there are still frustrations. Today I will say that I saw the best of Holly this morning. She woke up feeling good. We walked several times, had a good lunch, she got a massage to help her headache, and I left to go run some errands about 2:30 p.m. Holly called me about 4:30 p. m. and had the worst headache she as had in several days. Almost, incapacitating. She has taken Tylenol twice, which takes the edge off temporarily, and is now about to take the drug cocktail, so she can rest and hopefully sleep all night. What a roller coaster we are on!!
Keep the prayers coming. We want to say a special Happy Birthday to Blaire today. We hope have had a Great Day. We Love You, Blaire!!
Wade here. Holly had a little better day today. She got platelets this morning and she is getting more right now. Her blood counts are at the bottom and will remain there for several more days according to the doctors. This causes extreme tiredness and fatigue. Her headaches were some better during the day, but have come on this evening. She will medicate tonight at bedtime and hopefully have a good nights sleep again. She has eaten breakfast and lunch today which are really the first meals she has had in several days. Her attitude is still great and she has not run me off yet 😉 So everything is going good . Thanks for your comments and prayers!
Wade is back! Holly had a rough day. We are still fighting the headaches and nausea. We got the nausea better after lunch, but the headache was terrible. At 3 this afternoon, a new nurse, Sharon, took over for Holly and she wanted to try giving her a sleep aid and then some pain medicine after Holly was asleep. That seemed to work for awhile, but when she woke up at 8 pm the headache came back. We are hoping that it will go away once all the anti-rejection drug she was on works its way out of her system. Maybe by noon tomorrow.
The one thing I have learned this week is that this is an up and down cycle. One day your better and the next things are rough. I’m hoping this will level out in the next few days and Holly can have several good days in a row. Keep the prayers coming. As a bystander it is very frustrating to see Holly in distress and not be able to help. This truly is a battle that Holly is waging and I am like the support troops that can only be behind the lines and keep her in supplies.
Pray for the headaches and nausea to subside and for Holly to start eating something. Thanks for all your support.
I’m BAAACK !!! Seriously…I went somewhere down in a deep hole and it took quite a bit of climbing to see the light again! It is all of your loving, encouraging comments that give me the strength! You will never know how much I appreciate each and every one! You truly make me feel encouraged and loved! Dr. Jones told me this morning that my tacrolimus (anti-rejection drug) is causing the headaches. It causes inflammation of that barrier lining in your brain around your cerebral cortex, and this shows up on the MRI. I am now off the tacrolimus and will get on cyclosporine at 8:00 tonight. So that should get rid of the headaches. I can’t be on tylenol any longer for fear of liver damage. Other than all that I am feeling alot better. Lungs are improved, no fever, and only occasional vomiting. I really don’t enjoy talking publicly about diarrhea, but that is gone now too! YAY!!! Still have hair! Still can’t eat! My last real food was 5 days ago! I eat a few popsickles here and there, and some saltines, and jello. One thing I really like is ginger ale and orange gatorade! Wade has learned never to mention food…one morning he was talking about coffee and it instantly made me throw up! Just the thought of it. I am so much better because I can actually blog about that incident now! I’ve been able to walk around the unit a couple of times today, another big step! Bye for now, and again thanks from the bottom of my heart for all of your encouragement, love, and prayers! Holly
It is me again, Wade 😉 Holly is a lot better today. She is still having some troubles, but has felt much better. The biggest problem is the headache and the Tylenol is not taking care of it. So, we just got back from having an MRI of her head done and we should have the results in the morning. The doctor is looking to see if the headache is related to an anti-rejection drug she is on. She is very, very weak and tired, which is to be expected due to her blood counts falling to zero. The doctor says hang in there for a week or two, and things will start getting better as the blood counts start coming up. Your comments are so uplifting and appreciated. Thank you VERY much.
Wade here again. Started the day off with a unit of blood. This is very common for transplant patients because their blood counts are so low from the chemo. Holly is still very weak with headache, nausea, diarrhea, just overall pretty yucky feeling, but I have to say that she is a little better. Baby steps.
The best thing of the day. When the doctor came in and heard about her headache, he authorized Tylenol. Since she is 4 days past chemo, she can have it now. This is the first medicine that has helped Holly’s headache. yea!
Thanks you for all the comments and prayers. I read them to Holly everyday and she usually cries and says we have the most Awesome friends and family. I agree! Thanks for being here for us.
Wade here. Holly had a tough night and a pretty tough day. She has headaches, up and down fever, nausea, vomiting, diarrhea, and extreme tiredness. She doesn’t really feel like eating much of anything. All these things are to be expected, and the doctors and nurses tell us that this will typically last about a week and then start to get slowly better. Please keep all the prayers for her coming. All your comments make her smile and I appreciate that. We are truly blessed with many friends and family that support us always.
We started out the morning having all three lumens out of my central line declotted. Especially the yellow one where the stem cells would enter. And then we got the news that the transplant would be at 12:30 pm!!!! It was very exciting news!! At noon they started premedicating me with Steroids and Benedryl. Then Dr. Jones brought the Stem Cells into my room and held them up so I could see them and take a picture. Inside the bag it looked like watered down blood. The nurse started the IV and it was non-stop vitals during the entire transfusion. She told us to look real close at the tubing and we could see the little flecks of stem cells moving through the tubing. It was amazing that you could actually see them! The infusion lasted about an hour and a half. The side effects started a few minutes into the infusion…headache, body aches, fever, chills, and nausea. So they gave me lots of medicine to combat those. While I was napping Wade went out and bought me a little piece of birthday cake with a “0” candle and a very sweet birthday card! There have been so many wonderful, kind, sweet, amazing, prayerful, thoughtful acts of kindness shown to us! And your comments have been my strength and confidence! My gratefulness and thankfulness are beyond words! Wade took a picture of me with my cake and candle, but when I saw myself I quickly deleted it! LOL!! So here is a picture of the stem cells. I will blog more tomorrow!
Holly didn’t feel like blogging today, so I am standing in for her. She wants you to know that she appreciates all of your comments whether she can respond to them or not. The ATG treatment has been hard with lots of side effects and lots of drugs to treat those side effects. She has been experiencing fever, chills, nausea, and tiredness.
Two wonderful things happened today. Her nurse, Marah, brought her twelve fake orange flowers that are beautiful. She is from Dominique. Her husband works in the medical examiner’s office in forensics. Then Bob and Camille Beville from Hereford came by for a visit. It was really great to see them. Bob is here at MDA for his checkup and we wish him well tomorrow.
Everybody tune in tomorrow for TRANSPLANT DAY!! We will be posting some pictures.
P.S. from Wade
Please no comments on my dictation skills!!lol
Please click on the song below in blue letters!
My awesome Wade saved the day for me today! He brought me homemade mashed potatoes and green beans, a buttered roll, and a small filet. I took one bite of those mashed potatoes and started happy crying like none other! I had found something I could eat finally! I’m pretty sure he’s going to be pretty busy in the kitchen now! Speaking of Wade, he has been the most awesome caretaker a person could ever have! I love him so! He has been so sweet with me and considerate so I decided to play this song on the blog today to honor him and since it fits us perfectly! I Won’t Let Go