November 11, 2010 - Save the Date! Day -43

Hi everyone!

Well, I have a big update for everyone. A date has been set. The BMT coordinator called me today and said that she had all the information and all the dates. Alex will have cranial radiation on Dec 13, 14, and 15th. These will be done out-patient, 3 days in a row, at the Huntsman Cancer Center. This is considered a cranial "boost" because she had leukemia cells show up in her brain itself. On December 16th Alex will be admitted for the duration of the process. She will start the preparative regimen immediately. The actual transplant will happen on... get this... Christmas Eve. So... Christmas eve will be "Day 0"... Then it will be, hopefully, a steady count-up from there. A lot will be taking place between now and the 24th of December. There will be many different "work-ups" on Alex. We'll have to go into the Huntsman Center for them to make another mold of Alex's head. There will be many different blood work-ups and everything under the sun, I imagine. SO... today we are at minus 43. 43 days until transplant. Uggg!

On the donor... The bone marrow director made his decision on the donor on Monday evening. He decided to go with the donor that is CMV negative, but that is a different blood type than Alex. I forgot to ask what her new blood type will be. The donor was then contacted on Tuesday with a list of dates for Alex's targeted transplant date (a few days earlier than we'll end up doing it) and the donor came back as of this morning already and said that those dates wouldn't work, but the next few days after that would... so the donor is set and ready to go. This all determined Alex's transplant date of Christmas Eve. Oh well... Hopefully this will end up being the best Christmas ever instead of the worst? I am going to think this is a good omen having Alex's new birthday being on Christmas Day.

It is SOOO good to get all the information. But it has left me with a strange feeling today also. It sucks to have this reality made real today... even though I know we need to get this moving along.

Other than that exciting news, it's been pretty quiet around here. Alex hasn't felt all that well this entire week at home. The steroids that they gave her with the last lumbar puncture has made her entire body stiff and really sore. She has been on neupogen shots again this week and her counts are zero today. She has NO infection fighters at all onboard. Hopefully we make it to the next appointment without having to go back to the hospital. It's unlikely. It looks like waiting until after Thanksgiving isn't an option... dang it. For now her next in-patient appointment is November 19th. BUT, she has to make blood counts for the next round to proceed. Her ANC has to be 750 and her platelets have to be 75,000. Her platelets are good enough today (if they don't go down anymore) but her ANC has a long way to go. SO... here is the fun part of getting ready to go into the hospital on the 19th. Alex has to collect 24 hours of urine. We were given a big jug to put it in, and it has to be timed. They sent us home with what they call "hats". They set in the toilet, under the seat, to collect all urine. The jug of urine has to be kept on ice for this entire time. Cool huh? Then we bring this jug with us to the hospital when we check in.

So that is the plan for next week... and the coming weeks ahead. YAY!

I will update next week with blood count results and any other information.

Thank you everyone for taking the time to read about Alex's progress!

I also want to thank some of my most amazing friends!!!! (again, you know who you are!) I have the most incredible support system. I can't even believe it at times!

A very special thank you to Cynthia for bringing us dinner last Friday night when we were released late from the hospital. You have NO idea what that meant to me. The last thing on my mind was worrying about dinner but needing it at the same time. You truly truly helped me a ton! THANK YOU!!! We SO adore you!

Another very special thank you to our most amazing friends in Kansas... they are driving out here this weekend just to spend a few days with us. I can't wait to see you guys!!!

November 5, 2010 - Two Bags and a Boot

TGIF everyone!

Well, it appears that they want to kick us out of this place today. Everything has been going really well, and Alex's doctor is very pleased with the way she looks. SO, they are discharging us tonight. My most favorite time to be discharged... NOT! Oh well... BUT... Alex needs two bags of red blood before she gets to go home. Once again... THANK YOU to the people who donate blood! We sure use a lot of it.

So, as it sits right now, it looks like we'll be breaking out of here about 7 or 8 tonight. So dumb really...

That's about all I have today. Nothing too exciting has been happening. Which is good. I do think I got the doctor talked into starting Alex's next round of chemo the day AFTER Thanksgiving. How cool is that?! Wooohooo! SO, no more chemo until then! Yipppeeee!!!! We'll go home with twice a week blood draws done by our super home healthcare team. YAY!

Have a great weekend everyone!

November 4th, 2010 - Part deux

Just a little update...

The bone marrow coordinator stopped by with some news. She said that out of the 3 donor samples that they have received so far, that 2 of them are 10 out of 10 matches. This is great news in the HLA matching. The 3rd one came back with 9 out of 10 of the parameters met. One thing with the 2 matches is this: One match is Alex's blood type but CMV positive. The other match is NOT Alex's blood type but CMV negative like Alex is. I guess CMV is very common in many people. It's a virus that is present in many of us. The coordinator didn't know which match that the director would choose. BUT... she did say that she didn't think he would need the other two donor samples with what has been received so far. SO... good news on the matching process so far. You can find a bit more information about CMV here.

November 4, 2010 - Day 4 - Life on the Inside

Hi everyone!

Sorry that I didn't update yesterday. I could tell by the text messages and phone calls that some were looking for news.

It was a LONG day. Alex had her lumbar puncture scheduled for 11:00am. They were actually quite good at getting her in there on time. The procedure went quite fast. While she was in recovery the anesthesiologist stopped on by to talk to me... which was weird because they never do that. Apparently Alex's blood pressure went VERY low during the procedure and the Dr. said it "surprised" him. Her systolic actually dropped to 50 (this is usually the big number). The anesthesiologist had to give her some medication during all this to get that back on line. Alex's baseline blood pressure is pretty low anyway but this went well beyond that. In the recovery room her blood pressure was normal as usual and nothing more became of that. I am sure they'll watch for that in the future. It appears that more lumbar punctures are in her future. They already had Alex's cell results by late afternoon yesterday. The blasts in the spinal fluid (cancer cells) had gone down to 17%. This is better than last week but the blasts inside the spinal fluid are still persistent. They infused some longer acting, thicker ARC chemo. This will hopefully do some long term house-cleaning with those bad cells. I guess we'll find out in a few weeks how successful it was. I REALLY hope it does the trick. It's really frustrating to think back to those high-dose treatments that were supposed to take care of all this and didn't. I hope Alex doesn't suffer through weeks and weeks of this chemical lifestyle and have it not be effective. Ya know?

Alex is feeling a LOT better this morning. As good as it gets considering she's had 3 full days of chemo and being put under anesthesia and getting a big metal needle shoved up her spine with more chemo... She is just amazing. She felt well enough to walk across the 4th floor all the way over to the University Hospital (connected by a walkway here in Primary...it's awesome) where there is a Starbucks. She had to wear her mask, but it was nice to get her out of the room and it's so good for her to walk a little also.

SO... on rounds today the doctor stopped in and said they are going to bump up her chemotherapy by 4 hours for the next two days. They have been doing it each day at 5:30pm. Today it's starting at 1:30pm and then tomorrow at 9:30am. They are hoping that they can get us out of here tomorrow night. This will very much depend on how Alex is feeling by late tomorrow afternoon. If they still want her on I.V. fluids, I think we'll opt to stay another day rather than deal with them at home. It's very difficult to get an evening discharge and then go through waiting for home healthcare all night. And having to deal with dragging a pole around for just a night. Not worth it. So... we may still stay until Saturday anyway. We'll see.

I read a sad news story yesterday about the little girl who starred in Broadway's The Lion King died a few days ago from complications from a cord blood transplant that she received after battling leukemia. I read that over 80% of African-American's are unable to find a good bone marrow match. That news is SOOOO incredibly sad! I guess Alicia Keys and a few others were campaigning to find this little girl a match... and to increase bone marrow awareness. I urge everyone to be part of the bone marrow registry.

I hope everyone has a great day today. I will update tomorrow with news of when we get to go home. So far all of Alex's blood counts are good, so?

November 2, 2010 - Day 2 in the Final Block

Hi everyone!

Well, there isn't really much to report on today. But for the sake of those that are really interested in Alex's day to day progress, here goes...

Alex did very well with her first doses of treatment last night. She had a decent night although being made to go to the bathroom every 2 hours wasn't oodles of fun. I really cannot believe someone has not invented an I.V. pole that is better than the things that are in use. REALLY?? After all the advances that have been made in the world of medicine... and we are still stuck with these stupid poles?? I think there is a conspiracy theory here somewhere :O)

Alex's doctor stopped in today to tell us about the lumbar procedure tomorrow. It's pretty similar to every other one she's had. This one will release slower into her system and hopefully do the trick. He also said that after he examines the results of this next procedure that he may want to do another MRI so he can see if there are other things showing up... We'll see.

After reading her protocol last night for this next and final block (called a Road Map) I saw that there was a new type of drug and dosing that takes place on Day 22. I brought it in with me today to talk to the doctor about it. My suspicions where confirmed. SO... on Day 22 she will arrive for a 3 to 5 day stay. She will get an infusion that will last over 24 hours... of straight IV chemo! This did not sound like fun! And guess what days those will be??? Thanksgiving week. How sad! Especially since this is Alex's favorite holiday. I am hoping I can bribe the doctor to let her start this treatment a few days early so she has a better chance of being home on Thanksgiving day. We'll see.

That's about all I have today. I will update tomorrow after her lumbar puncture with any new information.

Please send more ass-kicking bad cell vibes :o) We need them!

November 1, 2010 - Blast the Blasts!

Hi everyone!

Well, it's been a shitty day up at the Children's hospital. Nothing too dramatic, but shitty none-the-less.

First... (and this I love) we are supposed to be here at 11:00am. We arrive at 11:00 and we are told that there is an entire pod of rooms but they aren't available yet because they have waxed the floors and we are to go to the clinic. Here we are with suitcases, computer cases, bags and now we get to hang out in the clinic... WITH all the children. Yay! SO... first of all we stand at the check-in counter for 37 minutes!!! With all our crap! And I ask the check-in person if things aren't ready if we can leave, go have lunch and come back?? Seems reasonable. Ummm, no. Finally after about an hour we are told that she needs to go back into the infusion room and they will start her bolus of liquids (a ton of liquid administered over 30 minutes). They want to do many different urine tests to make sure everything is working properly and also to have a comparison for tests that will come after this round of chemo.

Well, first let's talk about the shitty news. While Alex was getting her bolus of fluids her doctor stopped by to talk to us about the lumbar puncture results from Wednesday. After examining all the cells collected, they found that 37% of the cells were Leukemia blasts. This is not good news, as we thought the leukemia was in remission. The doctor said it was concerning and he agrees that a BMT sounds more likely the course of action. So, the plan of attack for these new cancer cells is; a second lumbar puncture will happen on Wednesday where they will administer a long acting chemotherapy called ARC. This is the same chemo that she received while in the hospital in those super high doses. They are hoping that this will kill those remaining cells. We need some serious cell-ass kicking vibes sent our way. Alex took all of this news really well.

So, now the routine info...

We finally got into a room at 1:30. Neat eh? We got Alex settled in and were handed the paperwork on all the chemicals that Alex will receive this week. She will be getting Etoposide and Cyclophosphamide every day for 5 days in a row. Both of these will be closely monitored by the chemo team. They both come with some different side effects than some of the other chemos. Cyclophos can cause heart damage and bladder damage. This is why they are always pumping her full of liquids. She has to go to the bathroom every two hours for the 5 nights she is here... even through the night. They will use as much liquid as necessary to achieve this. This medicine can also effect the liver. There is a special medication that they give with this chemotherapy called a "rescue medication". It's called Mesna. It helps with the bladder issues. The second chemotherapy is called Etoposide and causes some strange things also. The big thing they look for is lowered blood pressure. So, as this is administered, they will check her blood pressure often. There are also problems with shortness of breath. Both of the drugs this week have a side effect of "hair loss" which is kind of funny as Alex is totally bald now. She's not too worried about this side effect. So, all these drugs in addition to the lumbar puncture (which was NOT on the brochure!) will be given this week. Let's hope they kill all those remaining lurkers out there.

SO.... that's what we got going for us this week.

Once again I need to thank so many special people! You know who you are! Thank you for all the nice things you send... do for us... I am so grateful to so many!

I will update tomorrow with any additional details.

Let the fun begin.....

October 27, 2010 - A Meeting Among Us

Hi everyone! What an eventful last few days. After finding out about the meeting that was planned today, Alex's dad decided he wanted to fly in from Florida to attend. Of course Alex was thrilled! It's so nice to have him around for all this. Dave got into town on Tuesday and him and Alex got to spend a GREAT day together. This was the first time that they have been able to do something outside the hospital since all this happened. They had a great dinner together at the Melting Pot and she even slept over with him at his hotel. He also got early morning clinic duty.

First things first... Alex went into the clinic today early this morning and had a lumbar puncture where they administered 3 different types of chemotherapy. This was a new thing for her. She was examined in the clinic and then went right downstairs for the lumbar puncture and she also had a Bone Marrow biopsy. After the recovery room her and her dad went back upstairs to the clinic where Dan and I met them for the meeting. We had a little bit of a SNAFU about Alex's doctor not being able to make it... but when I kindly pointed out that was not an option and he must... it seemed that he changed his mind :D We all met with Alex's oncologist and also with the bone marrow director. It was really nice that Dave was able to meet Dr. Pulsipher. After presenting them both with all of my questions and getting TONS of information, we have definitely decided that the Bone Marrow transplant is the best option for Alex. It was actually NOT a hard decision for Alex to make. And we all agreed. First of all, going the chemotherapy route alone only has a 50% success rate. The bone marrow success rate on a person like Alex... with the matches they have found... is in the 80% For me, this really wasn't a hard choice. I guess if you were to have a diagnosis like Alex and there were NO good matches, then yea, maybe then you would choose to go the chemotherapy route and hope for the best. BUT... for Alex to be as healthy as she is AND for them to have put the leukemia in remission this fast, it seems the ideal time for a Bone Marrow transplant. Even her oncologist said that if we did choose to go the BMT route that now would be the best time. Not down the road. The chemotherapy way to treat everything would be another 2 years of chemo. The BMT way is more chemo right up front, but after the day the BMT happens there will be no more chemo. There will be many medications, but no more chemo.

So... the course of action is... We have another 5 weeks (35 days) of treatment. Day 1 is set to start on Monday. This will start with 5 days in the hospital. After the 5 days if she is fever free she'll be able to return home. After the 5 weeks have been completed she will have a 3 week break. This will give her organs a break and also her tissue... blood counts will stabilize again... and the risk of infections will decrease. THEN it's time. With my calculations that would be Christmas day. I am thinking that we could hold them off until Monday morning. It would be sooooo nice to have her home for Christmas before all this madness starts! I guess we'll find out soon enough.

So... I also talked with the BMT team today. The HLA matching is underway. They have already received 3 of the 5 matches that they sent out for. The other two should be here any day. At this point the University of Utah does extensive matching on the samples to make sure they are as identical as possible. The testing is almost complete on the 3 they have in so far. The coordinator who is named Stephanie (catchy name) said that she would come see us while we were inpatient and let us know about the other 2 matches and how the progress is going.

Alex felt well enough to spend the rest of the day with her dad. I tell you, she is one tough cookie! I would still be under the bed sucking my thumb since August... but not her. She puts on a smile... jokes around with us... and then decides to make the best of this last day with her dad. Dave asked if he could take us all out to dinner tonight so we met him and Alex at a great Greek place in Salt Lake. It was SUCH a nice evening. Alex was SOOO happy. We discussed the meeting and unanimously thought that the BMT was the best decision. I am extremely happy that we weren't presented with choices today that were hard to make. Here are some photos from tonight. It was such a nice thing having Dave her for all this. And so glad we could be together as the team that we are going to have to be to get through this.

This is such a great photo of Dave and Alex. I just love it!