Glad to hear everything is OK Lori, was missing you the last couple of days so very happy to hear that Keir is getting better

You make sure you look after yourself as well and eat and drink correctly

xxx

Hi Lori. All sounds pretty good. Arm yourselves with patience. Lots of it. It will get better. Taste will come back, so will appetite. Everyone who went thru this had to count calories in and drink their proteins. My motto became, if doctors are calm, don't panic, even when there are some hiccups. Had I actually listened to them, the whole process would have been lot less traumatic for myself and those around me. Lori, steal some moments for yourself. We, patients, can be too demanding and "clingy", yet we need our caretakers to be positive and full of energy. So find time to brake the monotony and recharge. Even if it is against your first instinct. It'll be better for both of you.
Best
Boris

Lori,

So glad to hear Keir is doing well. Like aussiemum, I was worried about you. I can not imagine what you and Keir have been through to make it to this point. I am sure now that you have moments to breath, the stress of it all is catching up. I will continue to pray for you and as others have recommended, please take care of yourself.

Blessings
Julie

Lori -

It is such a relief to hear from you! Of course, no aspect of this experience is easy, but it sounds like Keir is actually doing pretty well. I know how exhausted you are - hope that every day gets a bit easier now that SCT itself is behind you both!

Love,
Robin

thank you all. I feel badly not posting more. There are days I am just rather overwhelmed with living it- trying to keep track of Keir's meds and his food and exercise and so forth. Going to clinic twice a week is hard - has anyone else found it so? Just being re-immersed in a medical environment is depressing. I hold my breath at every blood draw, I freak out easily. Keir is so isolated - just at day +28 there is no option, really - but I am also isolated and so worried about him -physically, emotionally - all the time that I don't want to be a downer to anyone else. He IS doing well - I want to underline that - and has throughout. I just find it hard to rebound from all of this and to find some port of peace in it all.

Lori -- please don't expect too much too soon -- there is a downer even to success. I kind of had a downer when I got out of the hospital for the last time ... could not believe it ... felt like something had to go wrong -- it is normal. You should get back to normal once enough time goes by. We continue to pray for you and Keir -- dave

Hi Lori,

I'm very happy to hear that Keir is exercising and generally doing well after transplant! And I so hope that you will be able to relax and feel emotionally better soon. I understand the caregiver stress all too well.

xo
Monique

Stay strong Lori! I know you are exhausted. I'm so happy Keir is doing so well (considering what he has been through). I'm keeping you two in our prayers.

:) Julie

Thank you all for your encouraging words. Keir has been going to clinic two to three times a week and we spend about seven hours a visit there - that has been tough. The visiting nurse comes twice a week as well, so there is a great deal of monitoring. Keir has recently had issues with high potassium and creatinine, possibly from the anti-rejection drug tacrolimus, which has made the monitoring very important. I worry, but the doctor has not seemed too concerned beyond careful monitoring. Other than that, his counts are slowly recovering. He has 94 platelets, which is as high as it's been in quite a while.
He still has little in the way of appetite, but is careful to get his calories in. We order Ensure Clear from Abbott Nutrition - this is the sort you can get in the hospital, not those sold commercially - and they are palatable, light and have 200 calories ad protein, etc. Recently, he has added some more solid foods to his repertoire, and has also enjoyed some ice cream and juices. The weather here has been atrocious, like many parts of the nation, so we've only been able to walk outside once or twice. He gets exercise indoors as best he can - he walks, he uses an exercycle, etc. He has had one visitor and is getting another tonight, so he is happy about that - isolation is a big issue. He has been watching a lot of t.v., movies, and trying to read, though reading has been hard (lack of ability to concentrate).

His weight has been stable, and the fatigue varies - some days he is quite tired but others he feels better. Overall, from what I can tell, he is doing well. We struggle with anxiety - that is perhaps the biggest challenge but that is generalized with this illness and just part of the process. The psychological challenges are certainly intense. Right now we are really just kind of taking the "day at a time" approach because looking down the road has not been useful. It is hard to imagine a time when life is more normal but the veterans here are very encouraging on that issue! I would ask for continued prayers - that Keir be kept safe from serious side effects, that the transplant is a complete success, and for his healing - and his life back. He was 29 when diagnosed and it is so hard for him to see his peers moving ahead with their own lives while he is in a sort of holding pattern. My heart breaks for him daily - it is SO hard being a mom and watching this, even when things go well.

Lori -- thanks for the update. Keir seems to be doing fine and it is good that they are keeping a close eye on him at this stage. Things are discouraging but you have much to be thankful for. You and Keir have our prayers. Just keep taking it a day at a time. Things will get better in time. Take care -- dave

Thank you all. Keir is doing pretty well as he is now 1/3 of the way through the "100 days." The doctor has adjusted his anti-rejection medication as his creatinine was elevated, but yesterdays bloodwork was better. His other counts have been good and now we are waiting for the chimerism test results - all prayers appreciated much! It was pleasant out today - 50 degrees and not too windy - so we were able to take a walk. Keir has had a few visitors in the past two weeks, and that meant a lot to him; the isolation is so hard.

His appetite is not great but better and he is eating enough. I know that he has had a relatively smooth healing process so far, compared to many, and we feel fortunate in that and try to focus on enjoying what can be enjoyed daily. I find myself - as a mom and caregiver - still doing a great deal of the "what if" worrying but Keir feels confident that he is healing; he has a great deal of peace about that. We are very careful to follow the medical team directions about hygiene and food. One advantage of living here with my elderly parents has been that it's very quiet in terms of visitors, (a plus and a minus, obviously!) and we've been able to control the environment to a large degree. Lots of Clorox wipes, lots of hand washing and paper towels and Purell, and separate dishes, etc., for Keir. So that's where we stand right now - I'm finding the fatigue and mental strain a bit of an issue and do hope that improves, but have been warned to expect it to continue for quite some time. So I try to make sure I get as much sleep/rest as possible and hope - soon - to be able to do something really indulgent, like get a haircut!

Lori -- thanks for the update -- it is great to hear your good news. We continue to pray for the best long term outcome possible. Take care of yourself -- dave

Lori,

Thank you for the good report on Keir-what a great milestone, 1/3 of the way. I am sorry the isolation is difficult. I am having the opposite issue. My med team has told me to go live my life, of course to be careful with a mask until flu season passes. I am back to work (in the office) two days a week but I stay in my office with the door closed and still call into meetings because people are still sickly.

I only go into stores during off hours-in Utah Sundays are a great day to shop because the Mormons don't shop on (Sundays) :-). As for indulgence, I just started going back for my weekly messages as I approach the year anniversary of my DX on 22 March.

Please take care of yourself and get some R&R. You and Keir have endured so much and prevailed. My family continues to pray for yours and especially for a great outcome of the chimerism test.

Blessings,

Julie

So glad to read this today. Lori! Thank you for the update. I continue to pray for Keir, as well as all the warriors on this site.

Xoxo
Monique

Julie,

We both have March anniversaries! My third since diagnosis is March 28 (a milestone that I will be celebrating with my parents on their 66th wedding anniversary, which falls on the very same date). Actually, we will all be going out Sat night. It is going to be a huge family thing...my sister and her children, my brother, and I with at least one of my three kids enjoying a relaxing dinner out with my wonderful parents. Unfortunately, I am the driver, so I will be toasting with water.

I think Keir represents the hope of this website, and I have told Lori that many times. I think that the sadness we have all felt over the loss of two of our dear friends has to be replaced with good feelings about those of us who are passing our respective milestones in good health. I will never forget Ollie, Andrea, and Ed, and although reflecting on them still makes my eyes water, thinking about all of those who appear to have beaten this AML monster gives me an ear to ear grin.

Cliff