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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.

5/2/10_Back Home

Julie had her last round of chemo before the collection/transplant, but it was a pretty intensive dose of cytoxin; she was in the chair @ Froederdt for 11 hours Friday, and then we had to go back in the am for fluids before heading home. Went well, but as you can imagine, it took it’s toll on her; probably hasn’t really hit her till today / tomorrow. Then Tues, she starts the nupogen injections to stimulate the bone marrow to create stem cells, which are then pushed out into the blood stream. On 5/10, we possibly begin the stem cell collection process. Wish us luck on that! It’s critical that they get enough cells here to do the transplant on 6/3.

4/27_Next Steps

We met with Dr. Saad today. The fluid in Julie’s heart was considered non-remarkable, and not related to the myeloma. so the decision has been made to move forward with stem cell. This Friday, Julie will go in for an intensive round of Chemo (Cytoxan) at Froederdt for roughly 10-12 hours, then followed up by shots of Nupigen to stimulate her bone marrow. this is in preparation for the stem cell collection, which is roughly for 5/10-13… uh-huh, that’s her birthday; this is like a dialysis procedure in which they process her blood to try to collect as many stem cells as possible. Then there’s a bone marrow biopsy on 5/19; a conference with Doc Saad on 5/27. 6/3 is the tentative date for transplant admittance.  There’s a long way to go yet, but there is light at the end of the tunnel!

4/20_Heart

Haven’t posted in awhile. Julie had some surgery today to take a look at the fluid on the heart. Turned out that they wanted a sample of the fluid and tissue before they proceed with the stem cell transplant to see if bacterial/fungal etc. or the myeloma. We had to go in @ 5am today, and she was in recovery by 9, but it was pretty rough on her; they had to go in under the chest wall, etc.; not just a “needle” procedure; she’s at Froederdt now, and probably will be through Thurs. Talked with Doc after, and they didn’t find anything significant, but they still have to test it out; we see Dr. Saad on Thurs.to see what the plan is moving forward; not sure if he will have tests back at that point, but I’ll post again when I know for sure. Julie is doing ok, a lot of pain and discomfort, but they are taking care of her.

3/30_Update

We had an appointment with the cardiologist today; had to address the issues with the fluid Julie has (or should we say had) around her heart. Her Myleoma Doc (Saad) was concerned about this, so we needed to have it checked out. Good news is that the CT/Echo showed that the fluid has decreased, and the thought is that it will continue. This can potentially hold up the SCT (stem cell transplant) but it’s looking more and more like it’s from an infection, that dates a few months back; in fact, the Cardiologist decided that it’s too small to even tap; hopefully Doctor Saad will just move forward after consulting with the Cardiologist. At our meeting last Thurs., it appeared that the Myeloma numbers are fluctuating, higher than before; these were taken during a chemo week, so I’m sure he’s going to want to see us after the next round which starts up again Mon., and assumptions are that we’ll be moving ahead with the SCT at some point in the next 2 months, maybe sooner. Talked to a lot of people on the web who either have Myeloma or are caregivers, and clearly, this is the new “normal” for us, so we just need to hang in there, make the best of the situation and hope for a lengthy remission after the SCT. Thanks again to everybody for all the help, prayers and good wishes.