An Update

It’s been a long time since posted, but it’s time. Stem Cell transplant was initially successful, but remission lasted for a short period; Julie’s myeloma is, and always was, identified as very aggressive, and unfortunately, there’s very little left they can do to control it. Further SCT’s were thought to be unproductive; a chemo treatment called Revlamid was rejected by her body as well. The only alternative was aggressive chemo and Julie has made the decision against further treatment as of roughly 1 month ago, as the medicine is extremely hard to tolerate. The Doctors here in the Valley and Froderdt did everything they could, but Julie ultimately made a very difficult, brave decision to take matters into her own hands. She is doing in-home hospice treatment as of today, and the objective is to keep her as comfortable as possible. All Family members will be here to see her through to the next phase of her journey. Julie, Abbie, Maddie, Chloe Jo and I want to thank everyone for all the support and efforts over the past year. Not much else I can add except that we are in good hands and I’ll keep you posted.

7/26/10_Recovery

Julie’s been back home from stint #2 in the hospital since last Tues. The GVH (graft vs. host) is under control, and from here on in, it’s just recovery from the SCT. She will be seeing Dr. Saad weekly for the blood panels, treatments etc.;  things are looking good right now in terms of her numbers; nothing else to report for awhile till we here till things develop in terms of gauging remission. Thanks to the Aunts and Uncles Jody, Mike and Julie and Carl for taking Chloe the last few weeks; and the Grandparents as well! So grateful for all the help!

SCT Update_7/12

Sorry it’s been awhile since my last post; information has been a little sketchy, but here’s the latest. Julie was discharged on 6/24, but is now back at Froedert; she has been there since 7/8. She has something called Engraftment Syndrome (or autologous graft vs. host disease); this was the cause for all the problems with her bowels. The stem cells that were reintroduced are causing the issues, and they are not behaving – even though they are her own cells. She is on a liquid diet, and is being treated with steroids till the problem goes away; Dr. Saad tells me the problem is not chronic, but it needs to be treated. Pretty miserable experience at the moment, but as far as I know they can treat this and move on.

6/24_Julie is Back Home

I picked up Julie yesterday afternoon and she is home now. Still very weak and tired. A lot of recuperating yet to do, but still home well ahead of schedule. She was ready to leave in any event and I know that she’s happy to be here. I don’t know anything yet in regards to where her numbers are etc.; we have a Doctors appt at Froderet on Fri. I suspect we won’t know the lasting effects of the SCT for a while yet.

6/20_SCT_Day 18

Julie is doing very well, but still in hospital; WBC count is up over 5000, which is a great indicator; still some lingering effects from chemo, but much better overall; still waiting for  word from Docs for release; would think she’ll be out next week at some point. More to come when I know more.

SCT_Day 13

Julie has been in now for 13 days. Her white blood cell count on 6/9 was 2200, on 6/10 @ 700 on 6/11 under 100. As of yesterday, the count was going back up, and was around 500. She is still very uncomfortable: the chemo is really taking it’s toll on her body; it’s very hard to keep any food down, but she’s trying hard. With any luck, the counts will keep climbing and by tomorrow she’ll see a good jump. All of this is expected, and part of the plan, it’s important to know that. The high-dose chemotherapy is designed to zero out the immune system in order that the stem cells can jump start her new immunity; so as hard as that is, it’s the way the process works. I can’t tell you much more than that; it’s a waiting game at this point. Not sure when we’ll get her home at this point. I’ll keep you posted! Thanks again for all the good wishes, prayers and support! Julie does appreciate it very much!

Stem Cell Transplant _Day 6

Saw Julie the last two days, and she is still hanging in there, but getting very anxious to get out. So to recap, she had her chemo on Thus., and the stem cells were given on 6/4, As of today, her WBC counts haven’t dropped, but and they are expected to any day now. At this point it will get a little rougher, and she won’t be feeling too well for a week or so. This is when they monitor the WBC numbers very closely. The expectation is that he numbers will drop very low, giving the stem cells a place to inhabit and re-establish a new immunity system; when they are satisfied she is back up and running they will release her; probably somewhere close however to keep an eye on here. Her address is :

Froedtert Medical College
4th Floor; BMT Unit #9, Milwaukee WI
9200 W. Wisconsin Ave.
Milwaukee, WI 53226-3596

Please drop her a note, but they can’t take plants, flowers, etc. just mylar balloons.

Thanks! Much appreciated!

Stem Cell Transplant 6.3.10

Julie was admitted this am into the BMT unit at Froedert. She was given her chemo this evening, which is the only she’ll receive during this process, and it only took about 15 min.; it is extremely powerful, and will take her immune system down to nothing in about a week.  Tomorrow, she will be given back her stem cells, and the rest of the transplant requires waiting out the effects of the chemo, because she will be so vulnerable to infection etc. The reason they need to blast out her immunity, is that the stem cells, need to reassert themselves in her body, and jump-start her immunity all over again, as if the last version never existed; the objective is putting her into remission. The minimum stay is 14 days, but it could be longer. She’ll be getting white blood cell shots frequently, and when they are assured that her levels are back to normal and stable, she can be released. She’ll still need to stay close to Froedert at that point, but I suspect sometime early/mid-July, she’ll be back home. She’s back in the BMT unit on the 3rd floor again, and it’s not full isolation, but restricted; she can have visitors, but any colds or flu, not worth risking it; as long as she doesn’t catch a bug, she’s free to move around in there, etc. It’s going to be pretty event free week for her starting out, till the chemo kicks in about 5-6 days from now, and then it will be a little more uncomfortable; hopefully not too bad for her, but I’m assuming that following week will be the toughest leg for her to date. If you want to call her, shoot me an email, and I will get you her number. Don’t send flowers, as they can’t take them anyway. Cards, letters are great. Send her an email if you like to joolie61@new.rr.com; she reads all of them, but she’s probably not going to respond back. Thanks for all the support folks, this family really appreciates it. Tough times, but we are making progress, little by little ; she’s in great hands, and they are doing everything they can to turn this around, so we have faith!

5/12_Julies Birthday

We went in for the second round of stem cell collection today, and just got the call, looks like we’re done! They got 4.5 million on Tues., and 5.4 million today; so a total of 9.8 and they like to have about 10 million to do 2 transplants. So we’re good to go at the moment! I guess that’s as nice a birthday present as she can hope for, and she gave it to herself!  This is the autologous transfer again, where you harvest stem cells from yourself, then return them to the body after a dose of chemo called malofin (or something – not sure of spelling) which totally breaks down her immune system. The idea, is that these stem cells regenerate her immune system, and she can go into remission. So feel good about her birthday today, because it looks like she got what she needed; instead of a bottle of cheap perfume, she got 10,000,000 stem cells! Who else can say that! If all goes well, the transplant will start up on 6/3.

5/10

I know a lot of people are wondering how the stem cell collection is going, but it hasn’t gone yet. White blood cell counts were down too far, so we start the process again tomorrow; looks like things are better today; we have to be down the for labs @ 7 tomorrow; we’ll keep you updated tomorrow.