June 15 Update
Dear Fods,
Debbie had quite a week this past week with an extra trip to HUP today. When she went down this past Wednesday, her counts had fallen dramatically. Her wbc was down to 1.3 and her platelets were 5K -- very seriously low. They gave her platelets on Wednesday and required that she return again today to check her levels. Also, Debbie has now developed multiple small lumps all over her body which are very painful. Doctor Porter called them "balls of leukemia" and said that they are not unusual. Obviously, the problem for Debbie is that she cannot get comfortable in bed because she cannot find a spot where one of these "balls" is not getting pressure.
Today, we arrived at HUP before 8 and were literally the first patients in the place. With unusual efficiency we were immediately called into the lab and had the results within 10 minutes. Her platelets were 14K, which was too low, and they ordered another infusion to make sure that she would get through the weekend. Her wbc was 2, but that was after the neupogen shot she took on Wednesday night. All of this means that the chemo is doing its job and is knocking down the leukemia and everything else in its way! The good news is that the leukemia that was in Debbies' blood stream is not there now. While this is not remission, the chemo appears to be holding the leukemia at bay for the moment.
Heather came to the lab and visited with Debbie for quite a while to discuss her condition and continued care. Debbie will have to get her counts taken again on Monday -- but luckily at our local lab rather than HUP. Hopefully, her counts will hold until the next scheduled visit on Wednesday. At this visit, they will also do the first BMB of the clinical trial.
We left HUP around 11:00 and headed to the shore house for a quiet weekend. With technology, my office is always available with the laptop and I finished the day in OC. Hopefully, we will have a little sun tomorrow and Debbie will get some good beach time.
Thanks for all of the cards and well wishes.
Debbie sends her love to all.
posted by Joe @ 6:39 PM
15 Comments:
Hi Debbie and Joe! Hope you can relax this weekend and forget about PA doctors and hospitals. The ocean is the best therapy! Happy Father's Day! Always prayers and love, Trudy
Good morning Debbie and Joe -
So glad to hear that you're in O.C. this weekend. The beach & salt air always makes life better... Also a glass of iced tea and a sandwich from that special deli delivered to you, Debbie, on the beach is just the best!!!
Happy Father's Day to you Joe... and Debbie we send our love to you.
donna (tea bags)
Hi, guys. Hope your weekend was as relaxing as mine was busy! Just never seems to let up. I'll be so glad when the remodeling's done. The dog takes time too, but he's fun. Went kayaking with us last week. He's 11 mo. old now and 118 lb. Rocked the boat a bit but didn't tip us. Jim also ordered a cart for him to pull and we started cart training him. Cute! It's like a child's red wagon with 2 bicycle wheels. We get honks and smiling stares and comments when we're walking down the street. We're heading out to San Jose next week for a week to see Kate and attend a church conference. Looking forward to it, but, again, BUSY!
I know I don't write often, but I check in a few times a week and pray for you a few times a day - every time I look at my 'relentless' bracelet, which I always wear. Sorry to hear you're so uncomfortable. Hope those lumps and bumps are short-lived!
Love and prayers, Mussie
Hi Debbie,
I am so glad to hear that you were down OC. There is nothing like the
relaxing beach and sound of the ocean. Sorry I did not get to see you....actually I saw the back of Joe sometime over the weekend. We did not get a chance to even see the beach this weekend....but Wyatt did get to go down with his
older cousins. Chuck and I have
been buzy with the final painting.
Oh what a job...never again. We are
all looking forward to our family reunion this weekend of the 23rd.
I am so sorry to hear about the uncomfortable bumps all over you. That is such a shame for you.
Please know that we think of you all the time and continue to pray
for you! Feel better my friend!
Love,
Donna, Chuck and Wyatt
Joe...a Belated Happy Father's Day!
Are the bumps the welts, or do you have both? i have never heard of them. but i sure hope they dissolve soon.... good news that it sounds like this new chemo is doing its job though
we were in yountville/napa for another baseball game t his weekend.. mark was asked by the american legion coach to play in a tournament in oregon with them (it's an 19 under tournmanet.. mark is now 15!) but he's going, it will be good experience..
patrick continues to relax from graduation.. he got his report card, and opened it up , and saidy "wooo, im going to college!" when we asked what that meant.. he said.. "i didn't know any of the questions on my stats final!" but he ended up with a 3.5 so, we were happy with that, especially if you could have seen how much he cruised at the end!
did i tell you that the night before his graduation he and 14 friends tp'd their favorite teacher's house.. they used 143 rolls of tp! well, the teacher watched them, and had them all come back the next day and clean it all up...ha
fathers day was sort of a bust.. i have a hard time with these hallmark holidays.. im not going to go out and buy tim a tool to show him how much we appreciate him.. but unfortunately we only ended up getting a card,, busy with baseball games and what have you. so, it wasn't that great for him...would have loved to be at the shore though..
well, i do hope and pray you are a little more comfortable today..you really are so brave! love,mdf
Glad you got to the shore for the beautiful weekend. The beach is always good medicine. Hopefully the bumps will go away and you can get comfortable - glad ot hear the chemo is working and prayers are still on the way for you to be in remission and enjoying life again. Love, Shelly
Debbie,
I hope you had a nice relaxing weekend at the beach. I haven't been down in so long, I forget what its like. Matt and I are going to Lake George for vacation b/c he isnt much of a Jersey shore guy. Oh well. Hopefully those balls have gone away and you are feeling better. Good luck with your BMB and we're always still praying for you and Uncle Bob! XOXO MEG NOON
Hi Guys,
I hope you had good weather at the shore. I was sorry to read Debbie is having pain. The rest sounds good though. I hope today's test results are better. Keep your spirits up.
Take care,
Betty
Hi Deb,
As always I keep you and your family in my heart. You are known everywhere.
I had Mom at the eye surgery center in Southampton and the nurse taking care of Mom heard me mention your name and said I know Deb. What a small world. Her name is Wendy, I forget her last name, but she worked with you in the lansdale surgery center, she named all of you. She sends her love and prayers. Hope you get relief soon. Those bumps sound awful. Take care.
love hugs and prayers,
jean
Deb...
Have been thinking of you all the time. I'm in OC now until 6-23. Wish you were here for a little chat.
We are also having regular Wed HUP trips- hope they aren't too painful for you.
I'm with you.
Lizzie.
Debbie...
I'm with you every day....this little light of mine..
HUP Rhoades haunts me and inspires me at the same time... such incredible beautiful human spirit and at the same time.. such struggle.
Go Debbie.... come on.. we have to have a cuppa...
Tomorrow we have the first ever Irish Festival in Annapolis (of course yours truly is a founding member of the Annapolis Irish Cultural Society).... so proud it will be a great event... I've bought a ticket for you.. a round trip airfare to Ireland.... I sold the last winning ticket so you never know! If you win it... we're all going!!! cause it will be the ultimate "sign"...
love you Debbie... Jess catch a hug...
I think and pray and send vibes your way all the time.. can't wait until we meet..
Love Al. (oops Visitor Alison... Visitor to Rhoades)
Visitor Allison.. i hope your irish affair went well.. i am married to an irishman..wooooo..my mother in law is from carey county..she came out here to visit us in california. but said after her trip here, her next trip was to the grave.. not sure what i did wrong...ha., but thank god she is doing well back east..
Deb.. how are all your lovely lady lumps? I sure hope you are feeling so much better.. its been warm out here.. mussie better be ready, although she will be in silicon valley, which is cooler than sacramento area..
Enjoying summer vacation.. Mark is in oregon playing with the amer legion team, and patrick has gotten himself into a schedule of up till 2am, sleep in till 12 noon, i vacume anyways.. it doesn't seem to faze him,, i even bisselled outside his room.. he slept..
well, i better go.. i hope and pray you're feeling better..love ,,mdf
Hey Chizzie-
Thinking of you honey. Wondering how all is doing with your lovely lady lumps! (LOL -only you could come up with that one, mdf!)Did you have a good weekend?
We had a busy one. Josh and Jack came and we got things loaded up for them. It went pretty smoothly but now I've got big empty places here and there around the house and it looks kinda funny. Been procrastinating starting the big closet and drawer clean out, but that's gotta be next. Oh God. And the garage.
Still negotiating on the Denver place but think we're getting close to agreeing on a contract with the seller.
Well honey, just wanted you to know I'm thinking of you. Holler if you need me! Love ya!
K
I went to the gym yesterday for the first time in months.. tried to be cool, like i knew what i was doing.. did the eliptical, ab machine, rowning machine, then decide to ask a quick question to one of the "trainers" on which machine is best for old ladys fatty backs and upper arms.. dont' you know, he set me up for a 90 min appt for tomorrow!!! well, when they called to "confirm" my appt i got out of it,, said i just needed to know about one machine, that i used to be a jock and thin and i know all about the cardiovascular stuff.. make a long story short, not only am i out of the appt, i think they are going to dodge me all day tomrrow.. having a little trouble when i inhale due to atophied abs,, but i'll work thru it...
so, how are you feeling? it's now tuesday.. last i heard you were on your way to the beach? i sure am hoping no news is good news. prayers and good wishes headed your way..love,, mdf
Hey Debbie:
I feel so deliquent in sending you midwest wishes! This doesn't mean that I haven't had you on my mind throughout the day. Gosh, those lumps make me hurt. But your weekend in Ocean City had to be of comfort to you.
Well, Monday and Tuesday of this week we got Mere registered at St. Louis University. What an exciting time! I think we are all ready for this new chapter in our lives. Mere more so than us! It is fun to see what changes in the University life has taken place in the last 20-25 years. All this privacy stuff...with grades and medical care. All the seemingly overabundance of opportunities...
All is well here. Mom is really starting to get out a lot. The winter was hard on her and now she is really keeping busy at the Senior center and playing cards with friends.
The boys are such good friends. Bee just follows Colin around and does whatever he asks. Usually he does the scut jobs we leave for them to do and Colin picks the easy stuff. Poor Bee.
Dave is keeping very busy and throw in Mere's grad party on 7/07 and he is doing all my honey do's.
We will no doubt talk about you while we are all together. Mike, Bev and Matt have made arrangements to come. Rick and Laura will be busy with her recouperation from hip replacement on July 2nd.
Continued progress to you with the chemo. Sounds like this treatment is a step (though strong) in the right direction.
Love to you and Joe and the rest of the family! XXXOOO
COD Eileen
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