On to Clofarabine

[jaxem]

today is Day#27. Following hand-foot syndrone, liquids got out of balance w/ filling of lungs & eventually lowering of the ejection fraction below 20%. w/ the heart meds & antibiotics, some one or combo caused an episode of short breathing which lead to intubation & then insertion of a ventilator in the CCU. the vent was removed after a day & a half and a few days passed of monitoring. She is now back in the bone marrow unit getting her balance & strength back. Hopefully she’ll be discharged to home in 3 days following a tell-tale bmb. Man, what an experience this month has been. I tell her better a lost month of her life than the loss of her life. She’s a fighter & isn’t letting up. she wants to see her grandkids graduate college. the youngest one is 7.

[Mary4Mike]

Bless her heart, Jack. Continued prayers for strength and good BMB results.

[cherylm]

I’ve been so worried for you Jack. You guys have been thru so so much, too. I have to admit I had a hard time praying for anything after my dad, but I have begun praying again now for you and your wife. Do you think your wife would like to receive cards to let her know we are thinking about her and praying for her?? Cheryl

[poppyshope]

Jack tell your wife she is in the second grade’s intentions book for tomorrow’s mass (first Friday Catholic School) and they are all receiving communion for the first time with their school, so powerful St Martin’s prayers your way!!! The youngest is seven – great age- my oldest is 7- love that age! In my thoughts and prayers that easier times are ahead- jen

[jaxem]

thanks for all your prayers. it is well appreciated. she’s a little foggy but getting stronger. I’m trying to convince the docs to delay the bmb since her heart is struggling & will for a while. she’s in no condition for a transplant until the heart pumps better & her lungs will need a drying out time. i think though that they want to see what’s happening in the marrow.

[jaxem]

this is day#37 for my wife. she is still in the Hospital and weak but all vial signs are good. results of her bmb done 3 days ago put her blasts at between 4-9% depending upon judgement of the cells seen. they were between 15-20% before given the chemo. the flow cytometer puts them around 6% but again fogginess in cell judgement is inexact. her heart’s ejection fraction fell from 43% to less than 20% due to the clofarabine. this will have to return to above 35% if she is to get the transplant. her doc team is planning on a med to keep the blasts where they are while her heart recovers. I must say, the clofarabine did cut down the blasts but severely clobbered her body.

[annie-anne]

Jack,
Our prayers and thoughts are with you and your wife, best of everything.

[Jo L.]

Jack –
How is your wife? I’ve been thinking about both of you, hoping to hear the good news that she will be able to go home soon.

Jo

[jaxem]

hi, jo
my wife finally came home a week ago after 37 days in the hospital. she’s very lethargic & is getting along with a walker & me. we’re back on our normal 2 days/week clinic run to check blood & overall health.

[Jo L.]

Jack –
I am happy to hear your wife was able to come home. After 37 days it must be wonderful to be able to sleep in her own bed with you by her side. I hope this gives her the extra ooompf to help her healing and recovery.

Do you have people to come and help you with the caretaking? It’s important to take care of you, too.

Jo

[jaxem]

jo
after 10 days at home, she started getting cold one night. taking her temp, she was at 102. back to the hospital for cultures which turned out to be negative. given an antibiotic & anti-fungal med, it’s home again tomorrow after 2 1/2 days in the hospital. Oh, the life of a blood compromised patient! Have a nice Memorial Day weekend.

[jaxem]

well, 2 1/2 days turned out to be about 10 more days as she continued to fever and have sweats.
turns out fevers she was spiking to over 102 were caused by tumors (blasts) getting into the peripheral blood. previously, all blasts were confined to the marrow. the little @!?>(( blasts had gotten into her lungs causing to cough a lot. after they removed all doubt of infection, it was the only source left. A dose of hydroxyurea seem to wipe out most of them. she’s completed a round of mylotarg which we hope will keep the blasts in the marrow at bay until the facility she is currently at are approved to perform Cord transplants which hopefully will be soon. she is currently at home convalescing.

[Zoe]

Jack,

I am glad you all figured out what was going on. What a tough road you all have had. Can she go somewhere else for the transplant so she doesn’t have to wait? I will keep praying for you all.

Zoe

[Harold P]

Jack,
Our thoughts & prayers are with your wife, you, & your family. Your wife gives all of us strength. Please keep us posted. My husband Pete was diagnosed with secondary MDS & abnormal chromosome damage like your wife. Take care of yourself. Your wife is very lucky to have you be there for her.

MDS friends
Pete & Sandy Peterson

[Mary4Mike]

Jack,

Your wife has got to be one tough cookie and you are no slouch either

Our prayers are with you and your wife that things get rolling any day now.

[Author]

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