Lea,

My girls were 8, 10, and 12 when I was dxd last year and we kept there visits to s minimum. Between the germs and the sorrow I just didn't want them there. My husband and I agreed our goal was to keep their life as normal as possible. While getting induction I missed my oldest sixth grade dance, my fifth graders maturation class and broken finger, my poor hubby. We have no family support but my neighborhood and church helped with meals and rides to school. I don't know what's harder, a young child or older children. To me, the worse scenario would be what Lori is going through, a child with aml.

I'm glad tiny gets to see izzy. Please don't feel guilty about your time with her, hold her tight. When I came home from induction, all three of my daughter's slept in our room for months. The did not want me out of their sight, so sweet.

Tony has such a strong body and will to survive. He is going to make it.

Again, Cliff dave j and Julie thank you for your support and words of encouragement. Tony is finally getting to a place where he mentally feels like he is ready for this fight! There's a young man on the floor was eight days post transplant walking around doing laps at Tamalpais just like Tony and I still keep it up with our 3 miles a day, and that has given him encouragement! Is Dr. stopped in yesterday and has two patients that she sees posttransplant now that were similar cases to Tony's and both women have offered their phone numbers for Tony to contact them which is I think it would be so helpful and wonderful for him. Going to head home tonight so that I can bring our daughter back in the morning.Tony's counts are stable for reds, getting pretty low on the platelets, and his ANC is almost 0 (.09) already and there are no blasts detected, so I want to bring Izzy to see him before counts bottom out.
Small world, We ran into a client of mine husband doing our laps the other night, his wife Liz is admitted on the floor 3 doors down from us, she had Aml and was treated at Rush 15 months ago, induction then transplant, doing well for over a year, then unfortunately relapsed, and landed in w an infection, after newest bmb they detected flt3 and Rush hospital and sent her here to U of C as well due to their research trials & drugs avail for flt3). It's crazy to run into them again under these circumstances, but we feel that we (and she) are in much better hands here with these doctors. Dr Wendy Stock is our lead doctor and the director if Hemotology here, she keeps us informed and balanced and confident in Tonys care! He's always more calm after her visits

Lea,

I had the offer to call AML survisors who had traversed the chemo only journey prior to mine and it helped me so much. One great lady who is two years in remission is still in contact. That is great that your med group has offered this type of support.

WHile in for Induction most of the other leukemia patience were there for BMT. I was shocked to see how routine it all seemed. They walked the halls with me-huge inspiration just like Tony will be to others!

Praying for your amazing family

Julie

Hope all is well with you and Tony and that his treatment is progressing smoothly. My husband was diagnosed with AML last July and had his BMT in January. We would be happy to to answer any questions you may have about the process, what to expect etc. Though everyone is different there are somethings that seem to be the same for all. Also here if you ever need a shoulder. I know there are some rough days ahead, please know you are not alone.

Sending you a hug,
Colleen

officially in the nadir phase now, ANC zero for a few days now, needed blood Saturday, and platelets today. He's otherwise feeling good, no nausea or anything just a little sour stomach and a more frequency, but great appetite still. We have a nadir bone marrow Wed (day 17) to make sure the marrow is "empty" then another bone marrow on day 42 to confirm complete remission and healthy cell growth
Any opinion on what the platelet count minimum is to transfuse, 10,000 or 20?

Colleen, thank you, as we go through this we are learning a little each day about transplant but the med team doesn't tell us too much, which is probably best for us right now. I think tony would love to. Speak with your husband. Dave J offered his ear too, and I've told tony about both of you offering to chat. He's excited! Here's our personal email aplacek@me.com

Lea,
I have been reading your updates on Tony and you are all in my thoughts and prayers. My son was only 2 when he was diagnosed with AML. He is now 4 months post-chemo only treatment and doing well. I can certainly relate to wishing to be in two places at once and to entertaining a 2-year old in a small hospital room! I'm sure it is so good for them to see each other. When my son, Julian was sick, my daughter was only 5 months old, so my husband and I took turns with her and my son. My parents watched her a lot too. She has a great bond with them now!
At our hospital, 20,000 was the cutoff for platelet transfusion, but they always waited until they were WAY down there, and I understand that some facilities do wait until only 10,000. That always stressed me out worrying about if he would fall when his platelets were so low.
I'm so glad that Tony has many matches and I hope for the best possible post-induction results!
Jacki

Jacki- oh my God I can't even imagine going through what you went through I cant even form the words to express the pain that that thought alone of a sick child brings me after seeing the things I've seen these past few years!
I will add you and your son to my prayers for his continued health, and for him to live a long and beautiful life!
The cut off for platelets here is 10,000 which is low and so we asked because we're so active and Tony's walking so much for it to be 20,000 for him which they agreed to however they did suggest that 10 is completely safe and that is why it's the cut off, also the more that you get the more antigens your body can react to which going into transplant would not be ideal
they also agreed to somewhere between say 15 or 12 so we might end up there but he did get a bad today bc he was at 17.

Lea,

My parameter was 15. Many times I would be around 8 with no bleeding. If fact I wouldn't bruise and my med team told me the body adjust to the low platelets. As you know, I walked everyday with no issues. We did have a25 mile drive to the hospital to get labs about every other day while a nadired at home and it dawned on me one day, a car accident would have been a really bad thing. God's hand was always and is always there.

Sorry to hear no more green smoothies for Tony. Praying that this phase pass es quickly.

Julie

So since last night, he started feeling a little crummy, he's very in tune w his body and said I'm going to spike a fever tomorr or tonight, and he did this afternoon, around 230 it started rising over 100.4 then up Abd down for about an hour And half. They drew cultures at 4, temp raised up to 101.7 by 430 and finally by 5 they got him antibiotics
He feels crummy, bad headache, Tylenol helped a bit, and us heading down fir chest xray now.
I hate this!!!!!!!!

Hi Lea, I know this journey can be so testing but this momentary hiccup for Tony is really quite common. I had a 38+ temp after my transplant when my neuts were nil. I also am quite in tune with my body now and truly believed mine was due to my meds as I am quite sensitive to them and had previously had a fever from cytarabine so not unfamiliar to me. As standard procedure they have to do the cultures and chest x-ray but always better to be safe than sorry. They started antibiotics and even though my cultures grew nothing they continue until your counts come back up just in case and it is quite common to never find out the source of the supposed infection. I know it's hard (more so for a caregiver) but try not to worry about this as I know Tony will get through this fine :)

Tas, thank you, I know, we've been through this before, but the slow pace that things unfolded after he had been telling them for an hour he felt febrile is in acceptable, I'm so furious with that part of it.
His temp is just kinda fluctuating b/w 100.8-101.2 now, but his heart rate is normally 65-70 bpm, and tonight had been 85-95 bpm but his blood pressures are normal
I'm just scared, I lost my dad to a nutropenic fever two years ago
It's hard not to feel terrified :/

sorry to hear about the fever but please try not to worry yourself too much. (easier said than done i know). If tony can put down the kind of mileage walking with what they have put him through the last few days he is one tough cookie. I survived a nutropenic fever that put me in ICU a couple days, so if i can do it he can easily. It's hard to imagine having to deal with AML twice in your lifetime, with your husband and dad. You are a huge part of Tony beating this, he is very lucky to have you and your daughter.

Prayers for complete remission and an easy time of it from here on out.

Dave J

thank you Dave. Long night again, but temp is down to just under 100 finally, he's exhausted, as am I, but he feels better. His crushing headache went away, so that helped too. Heart rate is getting better too.
We have the nadir bone marrow today- just praying that his marrow is empty and that chemo did it's job.

Lea,

So glad to hear Tony's fever is lower and the headache has eased. Headaches plaguged me throughout my treatment and if Tony continues to get them you may want to ask for Fioicet. It was my go to for relief.

I have and will continue to pray for a clean BMB. The fact that this relapse was caught so early with such a low blast count coupled with a favorable cytogenic (inversion 16) seem to be in your favor.

May God bless your family

Julie