Fever is down today but not gone, it's low grade 99.2-100.2, so they not adding any new drugs (on cephapime now for over 24 hours) his clinical symptoms are less, still has stomach and bowel movement issues but not as bad, but his headache is better and chest xray was clear. The blood Cultures from his line and peripheral vein and urine are negative up till now, so still waiting to see if they grow anything. His urine output has been a little less and sometimes a little darker , anyone have any ideas?
Oh His heart rate was super high for him last night but is normal today, and blood pressures remain stable.
Hoping Dr.Cliff sees this post and chimes in..,

Lea,

The drop in temperature sounds good. Having bowel issues (especially diarrhea) are par for the course. It is amusing, however, how the nurses are petrified about constipation. I am glad that the chest XRay was negative. I would bet that the darker urine is a sign of some dehydration rather than related to any liver issues (bilirubin in the urine). His heart rate might be up for several reasons...rapid deconditioning, which seems to happen to everyone, dehydration, and the medications. I developed a pulse of over 100 that took me a very long time to get rid of, even after transplant. I would not worry about the pulse at all, unless is is accompanied by fever.

I had many headaches when in the hospital. I think the sleep deprivation doesn't help. I have a history of migraines years ago, which I had not had for years. Then, when in the hospital, I had them constantly, but didn't say anything to the nurses, because I knew what was going on.

Here's what you need to do....relax a bit....tell him how much you love him. That will make everything better. All kidding aside, I am pleased with his progress. Just keep your eyes on the prize (good health). Despite how terrorizing things seem now, it will happen.

Cliff

High pulse was accompanying the fever but both have resolved finally. Temp down to 98.0 this morning, Heart rate down to 62(his norm) late afternoon yesterday.
Lol Cliff I kiss him on the forehead, and tell him I love him, actually so much, that he said yesterday that my "greasy face" was bothering him (as u can imagine, me not being able to shower everyday here is wearing on us both) I got a good laugh and then washed my face
So, another weird question, he hasn't lost his hair this time, should we be concerned chemo isn't as effective? After treatment last year he lost it about day 15 but when we were in last round of consolidation last year, it started growing back and came in thicker (which he was thrilled about bc it was thinning before)
His ANC has been at zero since 1 week post day 1. We had a bone marrow yesterday and am just praying it's empty

Thats great that the fever is gone and his heart rate is back to normal. My normal is 66 but i had spells where it was less in the hospital and spelIs of low blood pressure too.

I wouldnt equate not losing the hair to the chemo not working. I bet he is just glad its not falling out. When i lost mine it came out in huge clumps, it took about 3 days from a full head of hair to kojak bald. It's finally trying to come back after 9 months.

I'm glad you are both doing well, praying for remission and no more complications. Keep us posted.

Lea,

SO glad to hear Tony's fever resolved along with his heart rate. I was told that the idarubicin (red devil) was what caused hair loss. The AriC usually does not cause hair loss. My hair started growing back right after Induction. My hair did not fall out until 2 weeks.

I am praying for a clean BMB

Julie

Lea,

My sister's BP also went up with her start of chemo. They were checking hers every two hours which drove her crazy :) It did settle down also.

Praying for good results for Tony!!

I cannot really say about hairloss. I know my son lost all of his over a period of several days post-induction. They always gave us a printout of the drug side effects, so if you have something like that, you could see if hair loss is listed. Honestly though, I would take comfort in the fact that Tony's anc is zero. That is important from what we were told. It means the chemo is doing it's job. Waiting is so hard. I am glad to hear that his temp and heart rate are down though. I understand how scary fevers are...even low grade. I remember worrying anytime Julian's temp creeped into the high 98s. Hang in there. Praying for another remission"

Tonys BMB nadir results show clean/empty marrow!! he's doing much better after the fever subsided, back to his active self. I was able to come home Thursday night and spend a few days&nights w Isabella
She truly is the glue that holds tony and I together thru this ordeal!
For Mother's Day(& her 2nd birthday which is tomorrow) I was able to drive her up for a visit w Daddy, it was so wonderful to be with my husband and daughter today, even if for only a few hours
Happy Mother's Day to all you mommas out there and thank you you for the continued prayers and support
Xo
Lea

Praising God for tonys clean bmb!!!!!! So great to hear you were able to spend time as a family. You have my family's continued prayers

Julie

Lea,

Great to hear about Tony's marrow results. Just what we all wanted. Don't count your chickens about Tony's hair. I cannot imagine that it will not be saying sayonara. Nevertheless, hair loss is not a barometer of the effectiveness of treatment. Rather, his terrific bone marrow is.

It's all good (as the overused phrase goes). I am very happy about how things are going with Tony.

Cliff

Lea,

I'm so happy to hear of the clean BMB! I seem to remember Vince had some dark urine at times due to dehydration and they would up his fluids. So glad you all were able to spend some time together as a family too.

:) Julie

That is great news. On to transplant. Have they narrowed the field on the donors?

Dave J

They have not narrowed it down to a single donor yet from what I understand because he has so many perfect 10 of 10 matches their action going to dig further into bloodwork and DNA to find some K IR gene matches which have proven to be beneficial especially in unrelated donors.
The research seems very promising and so I think they've done is they've selected the top 10 donors to have additional blood work done and are narrowing it down to five now.
Not sure if anyone has heard or had any experience with KIR matching
My only concern with this would be if it extends the amount of time it will take to get to transplant I don't want Tony having to go through around of consolidation chemotherapy in between so I'm really hoping they can get on top of this and get it done ASAP
Is ANCis still at zero and he's had have three blood transfusions and three platelet transfusions so far and he really has reaction to platelet transfusions almost every time temperature goes up almost a full degree and he just feels off I hate it it's so stressful
Just managing symptoms and toes counts recover and then another bone marrow to establish complete remission before transplant

Progress is being made so that's a good thing. I cant speak for your transplant center but mine needed to be nudged along to keep things moving. I was on the phone with the coordinator at least 3 times a week.

Sorry he is having difficulty with the transfusions. I didn't realize how easy I had It till I started following along here.

That amount of matches still blows me away. Theblord at work for sure. I think I read "keep your eyes on the prize" from cliff. Seems to apply here perfectly. Continuing prayers for your family

Dave J

So he's Been profoundly neutropenic for 15 days now, had a fever last week, with no found source, still on creepiness until neutrophils recover though. Tonys been feeling well since that resolved. His normal body temp is 97.9, but yesterday around 5pm his temp rose to 99.8-99.3 and pretty much stayed there until earlier today. Around 2pm his temp was finally down to his norm 97.9, so I packed up my bags and got ready to go home and see izzy (been gone 6 days) and he took his temp and it was just 99.7, and I'm just not comfortable leaving him, as if anything happened I would be over an hour & half away. He said he feels a little achey but not febrile, and wants me to go home to our baby:(
I am so stressed by these temp fluctuations/ possible fevers.
Today he did have .02 nutes for the first time since chemo, so I'm praying that they are on the rise finally. I'm so tired and so tired of the ups and downs and we have so far to go:(
I did hear that sometimes your temp goes up a bit when your bone marrow starts kicking back in, bc of cytokines. Any one else go they this ??