Friday Update

Thanks for all the good wishes and prayers. We sure need them about now. We're still trying to figure all this out, so bear with us.

Greg went to clinic this morning, and found out yesterday's count. Basically, they were not able to collect ANY stem cells Thursday. That's not good. Typically, the collection begins 12 to 14 days after getting the Cytoxan. They began on day 14. The first day is supposed to net the highest number of cells. But, when has Greg ever done anything according to the protocols?

Greg had a long chat with his nurse-coordinator, and they discussed his entire history. He really never has done anything according to plan. He doesn't respond well to chemo, and he's usually late when he does. For example, his white counts always come back much later than the literature says they should. So, one possible theory is that he's a "late bloomer." Maybe he will release his stem cells later than he should. Based on that possibility, they did not attempt to collect any stem cells today. Instead, they gave him another shot of growth factor, and will do that again Saturday & Sunday. Then, they'll try to collect again on Monday. We won't get the count until Tuesday a.m. Basically, we're in a holding pattern until then. But, I can't underestimate how serious this is. No stem cells means no transplant. At least not this kind of transplant. This is not unheard of, but its not usual, either. Sigh. We haven't really been told what we do if this attempt to collect fails. So, direct lines to the Big Guy Upstairs are definitely warranted. Thanks to all for your love & support.

Matthew and I came up to St. L today and are spending the weekend. Eric had to work, so he's taking his first solo at home. The neighbors will let me know how good the parties are.... Note to Eric: When my parents left me home alone for the weekend, the house was always cleaner when they got home than when they left. (Of course, in this case, that means you have A LOT of work to do!)

We plan to just try to relax & enjoy the weekend, as its all out of our control anyway. My oldest sister, Debbie, (she hates when I call her "oldest") is on her way here from Cudahy tonight with her two youngest girls, Larisa (17) and Kacey (15). Matthew is looking forward to seeing his cousins. They love playing with him. The duplex will be very cozy. Matthew gets to sleep in the kitchen. We plan to go to the zoo tomorrow. Greg continues to feel good, so we'll take that as a positive sign.

Tonight, we went to Zia's restaurant, on the "Hill" per the recommendation of Daniel & Judge England. Judge, you were right, the Chicken Spedini Proscuitto was great! Greg ordered Chicken Parmesean, and had entree envy. Ted Drew's Custard tomorrow.

So, I may not have much to report again until Tuesday. Meanwhile, we really can't thank all of you enough for all your support.

Love,

Us

Numbers

Well, yesterday's collection didn't go as well as we wanted. Greg only collected 0.1 units. This is pretty discouraging, since usually the first day is the best day. Greg had a long talk with the resident, who met with the doc in charge of pheresis. The plan is to try again today, and see how many they get. If the number goes up, then we can probably continue to collect. If not, they'll try to come up with another plan.

Lisa, I like your idea about finding a stem cell broker. I'll "Google" that.

Will keep you all posted.

Thanks for all the support.

Love,

Us

Harvest Time!

Its 9:30 and Greg is in the chair & hooked up to the machine! His white count made it over 5, so they're harvesting the stem cells. We thought they were going to harvest a total of 2.5 million, but the orders say to harvest 5 million. We're a little confused as to why, because we understood that 2.5 are needed per transplant. Maybe (pure speculation) they plan to bank some for another transplant down the road? Of course, it would be helpful to speak to the doc, but all we're seeing is the nurses (who are wonderful and knowledgeable, but sometimes give conflicting info). So, with the .9 he has in the bank from last year, he needs 4.1 total. Hopefully, he can do this over the next 3 days.

They will harvest for about 4 hours, then it goes to the lab to be counted. He'll get a call tonight, anywhere from 7 to 9 p.m., letting him know how many they got & whether he has to come back tomorrow. (Pity the poor slob who has to count all those: "One, two, three, four......" I guess it takes a while to get to 5 million. What if he loses count?)

Thanks to all for the great comments. They really help to lighten things up, and Greg really enjoys reading them. Keep it up!

And,

PRAY!!!

Thanks!

Us

Home Sweet Home

There's no place like home!

The boys and I went up to visit Greg this weekend. It was a quick trip, because Eric worked until 8 on Saturday night, and had to be back to work at 12:45 today. Got to St.L about 11:30 Saturday night. Both boys slept most of the way up. Once we got there, Matthew was really cranked up & finally fell back asleep about 4 a.m. He and his dad had a great time. Eric & I were snoring.......

Speaking of snoring, the last photo above is them "watching" Indy. Exciting race......

Well, the duplex is REALLY small (if you can't already tell from the pics). But, its very pleasant inside, and Toni (the owner) has made every effort to make it seem like a home. She has 8 or 10 units in the same general area. Most people who rent from her are those who've had lung transplants, and end up staying for 3 months or more. I didn't get any pics of the basement, but there's a washer & dryer, and two twin beds down there. To give you an idea of what its like, both Eric & Matthew said, "I'm not sleeping down there!" They slept on a blow up mattress in the living room -- after we removed some of the furniture to make it fit. Very cozy.

Don't really have much to report on the medical side. Greg went to clinic every day, but since its the weekend, they didn't order any labs. I'm not sure why, as you don't suddenly get better just because its the weekend. The nurse went ahead and drew some Sunday, but it was "express" so we didn't get all of his counts. We'll have a much better idea of what's happening tomorrow. He's scheduled to start pheresis tomorrow, but, unless his counts have improved dramatically in a short period, I don't think that's likely. So, time to knock on the Big Guy's door again.

Enjoy the pics.

Love,

Us

P.S. Quick Tuesday morning update:

Its almost 10 a.m. Greg's plateletes are good, and his whites are over 4. Ian, you'll be happy to know that he's no longer neutropenic. (I wonder if that had something do to with my visit this weekend?) Anyway, altho its a day later than we wanted, it looks like he'll be able to start pheresis tomorrow (Wednesday). It can take about 4 days, and they don't collect on the weekend, so that's a bit of a bummer, but all in all, not bad news.

More details as they develop.....

"Rocco, I'm sure gonna miss ya"

Well, we had a little scare yesterday a.m. when Greg showed up at the clinic extrememly tired -- way more than he should be. Turns out he was very dehydrated, his pulse was 160, and his blood sugar was off the charts (over 400). As you saw from the last post, he wasn't eating the most healthy, but, he wasn't gorging on sugar and junk, either. His white count was really low, too. I thought I was going to be making an unscheduled trip to St.L.

They got him hydrated, and gave him an IV antibiotic prophylactically. He felt a lot better. He was good and ate more carefully yesterday. However, Rocco and the boys sure are gonna miss him!

Today, his blood sugar was still high (300), even with the good diet. So, there's a possibility an infection is lurking. The nurse explained that with his whites so low, and the blood sugar so high, that's one possible explanation. Skibby can probably explain this better, but that's the gist of it. Today they sent him home with a 14 day supply of oral antibiotics. But, he's feeling MUCH better.

This diet thing is going to be tricky, though. High blood sugar means no carbs. He's neutropenic, so no fresh fruits or veggies. Also, he can't have a lot of protien, as its hard on your kidneys, something multiple myeloma patients really have to watch. I think he's having a stick of butter for lunch.

His platetelets are coming up a few ticks every day, so they haven't needed to transfuse him yet. That's good. The boys and I are going up to see him this weekend. We still hope to start harvesting stem cells early next week.

Thanks for all the prayers. Keep 'em coming!

Love,

Us

"I'm really only here for the food"

Just a quick update.


Greg is in St. L and doing well. He feels good, although still a little tired. His duplex is very near "The Hill," which, for those of you unfamiliar with St.L, is an ethnic Italian neighborhood full of wonderful restaurants, complete with "grandma" back in the kitchen -- or at least her recipes. I've been getting the daily update on all the great places he's been to. Yesterday he went to a breakfast joint that was straight out of the "Sopranos." Needless to say, he was the only Polish boy in there, and the only guy who needed a menu. At one point "Rocco" came in (his name really was Rocco) and it was like Norm coming in to Cheers ("ROCCO!"). Greg's first thought was: "If a fight breaks out -- I'm on his side!" He looked like a Rocco, too -- big, hairy & dripping with gold jewelry.



Last night he got a pizza that he plans to eat off of for days. Thin, crispy, and loaded with everything. Since I wasn't there, he even got mushrooms -- the first ones he's had in over 20 years!. Sounds yummy (except for the fungus part!)



Today, his labs showed the chemo is definitely working. His platelets are down to 2.2, white count .7, reds at 3.5 and absolute neutrophil (whatever that is) at .2. No blood transfusion today, but he's penciled in for platelets tomorrow. (Andy, get yourself down there and donate some!)

He's diligently hand washing, and being careful not to cut or bruise himself. I told him to get lots of rest, too. So far, everything is as expected. The real trick now is to have his counts start going back up -- something he hasn't been very good at up until now. So, if you're looking for something specific to ask the Big Guy for, this is it.

Thanks to all for the prayers & support. I know I always sign off with that, but its really true!

Love,

Ann, Greg, Eric & Matthew.

Haircut Time!

Well, they're not exactly in order, but here's the haircut pics. You can enlarge each image by clicking on it. We actually had a good time. Greg is looking forward to all the money we'll save on shampoo! Matthew was scheduled for a cut, too, and up until he got into the chair, he vowed he was going to get his head shaved, too. When push came to shove, however, he thought better of it and just got a "regular" haircut.

Greg is doing OK. A little tired, and the chest cath is giving him a lot of discomfort. But, all in all, not too bad. No real side effects yet from the cytoxan.

He and Eric left at 4 this morning for St. L. Eric just called & said they were eliminated from the tournament early, so he's on his way home with the Altoonians.

Greg is on his way to the duplex to get settled in. Tomorrow he will start his growth factor injections.

Keep the prayers flowing!

Love,

Ann, Greg, Eric & Matthew

Its a Good Thing Gas is so Cheap!

Well, yesterday was an interesting day. We got up at 3 so we could leave for St. Louis at 4. Greg was scheduled for labs (7:45), chest catheter placement (9:00) and chemo (11:00). Because we had to leave so early, we took Matthew with us.

At 4:20, when we were at I-44 and US 65, I realized I had packed everything we could possibly need for the day (snacks, DVDs, books, crayons, toys, juice, extra underwear)...except Matthew's shoes. Great. Too late to turn around so we pressed on. Got Greg to the front door of the hospital at 7:40 & dropped him off. Then went in search of a Wal-Mart for shoes. Actually found one fairly quickly. Matthew is now the VERY proud owner of a pair of $5, "cammo" colored Crocs. I hurried back to the hospital because I was afraid they wouldn't start the chest catheter until I, his driver, was there. They're very strict about that.

Well, I needn't have worried. They called Greg back, & said they'd go ahead and prep, but were still waiting for labs. When the labs FINALLY arrived, turns out the scheduling nurse had ordered the wrong lab work. (Its only surgery, why on earth would we need a platelete count?) So, they had to start that over with a new blood draw. Its now about 9:30. When those finally got back, his plateletes were below 5. Choice? Either rerun the count with a different procedure, or transfuse him. Because this is vascular surgery, they can't go with a count below 5. They decide to rerun the labs, STAT (I always wanted to say that!) They come back 5.1. Its a go. Its about 10:45 now. No one (including me) thinks to call the Treatment Center to let them know he'll be late for chemo.

Meanwhile, Matthew and I have been watching classic Tom & Jerry on DVD. Actually made us pretty popular in the waiting room. We decide to head out for a snack, as we really haven't eaten anything. I look like a pack-mule, carrying purse, DVD case, duffle bag, & Matthew's backpack ("I'm soooo tired, Mommy!") We go to the Children's Hospital cafeteria. Had a fruit plate (3 slices pineapple, 5 stawberries, 20 grapes & a quarter cup cottage cheese), yogurt, milk and a Diet Pepsi. All for only $12! What a deal!

We go back up and at about 11:45, the nurse (who was great about keeping me informed -- she was (almost) as frustrated as we were) tells me they're about to start. Yea! So, we watch MORE Tom & Jerry, break out the coloring books, & eat Goldfish crackers, trying (unsuccessfully) to keep the crumbs to a minimum.

At about 1:15, he's finally sprung from radiology & we show up for chemo. The receptionist tells us its a 2 hour process, & tells Greg to go get something to eat, as he hasn't been able to eat all day due to the cath placement. So, back to Children's Hosp. After applying for a second mortgage, we have lunch & go back to treatment. Greg signs in. We wait. And wait.

Finally, at 2:45 or so, the treatment nurse comes out. Houston, we have a problem. The treatment takes SIX hours. And, they won't start it after 11 a.m. Great. (Why didn't the receptionist know this?)

Meanwhile, Matthew, who had been running fever the day before, and only slept about 30 minutes in the car on the way up, is getting really tired. And stuffy. And is sneezing all over the place. Just what you want in a cancer treatment center. (No fever, though -- and his pediatrician told me he's only contagious when he's running fever.)

Dr. Vij is consulted, and says Greg has to come back tomorrow. Sigh. We get home about 7 p.m. Wine is definitely in order.

So, Greg left at 6 this morning to go back (hey, its only an extra tank & a half of gas!). I get up soon after, and then Matthew wakes up crying. Very uncharacteristic. He sounds like a 4-pack a day smoker, can't breathe through his nose, and is running a fever, again. So, I'm at home, again. The good news is, my coloring skills are really improving! But, my house isn't any cleaner.

Now, the growth factor & pheresis, which was supposed to begin Sunday, is pushed back a day. Hopefully, this won't effect our June 9 admission date. We'll see.

But Greg & Eric are off to St. L on Sunday anyway, as Eric has a JV LaCrosse tournament there. Greg will take him, and the Altoonians will bring him home. Greg will stay for about 2 weeks for stem cell collection.

We definitely have the duplex beginning that day. I'll send out a separate e-mail with the address & phone number, since the blog isn't secure.

So, we're off, but not exactly running. Hopefully we're getting all the hitches out of the way early, and it'll be smooth sailing from here on out.

Oh, and Saturday is haircut day, so stay tuned.

I'd write more, but I have to go watch Sesame Street & play cars now.

Thanks again for all the love & support. We sure need all we can get!

Love,

Ann, Greg, Eric & Matthew

Prep Time

Well, we got the final schedule, and, if pheresis (collection of stem cells) goes as planned, we are on track for hospital admission June 9.

Next Wednesday, 5/14, we start in St. L at 7:45 a.m. (This will be interesting, as Greg has to teach in Joplin Tuesday night until about 8:30, and gets home around 10). He will get his catheter placed, and then his cytoxan chemotherapy. In my last post, I thought this was to release stem cells. Actually, its regular chemo to start cleaning things up. He goes back to St. L to stay 5/18, where he'll start injections of growth factor -- that's to stimulate stem cell release.

His hair will start falling out soon after the 5/14 injection, and he's scheduled for a "haircut" on 5/17. I'll take pics & see if I can figure out how to post them. Matthew and Eric said they're going to get "sympathy cuts," but we'll see. Eric has to work that day, and Matthew may decide he likes his pretty red locks. Mom does. Last time, Greg didn't want to get the "pre-transplant" haircut (head shave). Things got pretty ugly. After about half of it fell out on its own (ew!), we cut the rest off while at the hospital. For legal reasons, they won't give you shears to do it, so we did it with the craft scissors I had brought along (damn lawyers!). Not pretty.

Anyway, he could be in St. L as long as 5/30 before he gets to come home. We hope the duplex will be available on time.

So, in the meantime, we're busy getting ready on our end. The "care and feeding manual" is up to 32 pages, but most of that is things related to the house (garbage pickup, mail, grass cutting, etc.), and driving directions. We've had tons of offers of help, most of which we're trying to take advantage of.

For now, just keep those prayers and good mojo coming our way. We can't tell you how much we appreciate them!

Love,

Ann, Greg, Eric & Matthew

Leaving Comments on the Blog

Hi everyone!
A number of people have reported experiencing problems leaving a comment on the Blog. I've checked around, and I think there are two possible ways.

The easiest is to just click on the comments section. Off to the right is a box you can type your comment in. You will be listed as "anonymous" if you do this, but you can leave your name at the bottom. If you use this method, you have to type in the word verification that appears after the comment box.

The other way is to create an account, which I think you can do on either the blog page or on the comments page. Just look for a link. I think you may have to create an e-mail account, too. Its a Goggle account, and its free.

If anyone else has any further input on comments, let me know (or, leave a comment!)

Either way, I hope to hear from everyone once things are going strong.

Love,
Ann