November 30th, 2010 - Clinical Trials... 24 days to transplant

Hi everyone!

Well, as usual for us lately, it was a busy day at the oncology clinic. Let's start at what happened yesterday... The BMT coordinator called yesterday and said that they weren't aware that Alex was going in for another lumbar puncture and had decided since she was going to be there, that they could do their portion of the bone marrow biopsies while Alex was already under anesthesia. Wow... finally someone is talking to each other. SO... this will free up December 6th for Alex and one less operating room visit. It did mean a longer day today for us. For a couple of reasons. One of the reasons for the bone marrow biopsies has to do with this clinical study they want us to participate in. In order to move that up to today's visit, they needed us to talk with the people associated with the study. In the end, we are still not sure what we are going to do. I am going to call our case manager tomorrow and see just how horrible our pharmacy benefits are going to be. We have great insurance when it comes to the medical side of things... it's really not good on the pharmacy side. Remember the fungal pill... I am hoping to find out more about medications tomorrow. Alex WILL come home from the Bone Marrow transplant on at least 15 medications! No lie! So, as it sits, we are still on hold with the decision about the study. They did take the extra bone marrow sample and have a hold on it at the lab until we make our final decision. It's not an easy one. Of course! The drug that they are wanting to give half the patients on the clinic trial has been shown to have some benefits with GVHD (graft vs host disease) and also with relapse. BUT... and a big butt... it comes with some potential serious side effects (of course!). There are just pros and cons with everything. You just have to decide what makes you feel better about all the poison. In the end, Alex will have to decide what she wants to do. To a certain extent. The cost of such trial medications will come in to play and if they are exorbitant... well, we may have to go with standardized treatment. Which she has a 50% chance of getting randomized to anyway. Make sense? Uggg! I hate decisions of this nature. And we seem to have to make them all the time! Anywho... moving on...

Alex was seen in clinic today for her standard check up. The BMT people also decided that because she needed to get her regular CBC blood draws that they would do their BMT labs along with all of it today. This will save us a good hour tomorrow when we go in again. SO... in the end, they ended up taking about 20 vials of blood from Alex today. Her regular blood counts came in pretty good today. White count 4.3, Hematocrit (red) 30, ANC 3.5 (excellent) and platelets at 46 (low but OK).

After the BMT labs and doctor exam they sent us down to the RTU for her bone marrow biopsy and for her lumbar puncture. They administered that HUGE slow acting ARC chemo again. This is supposed to be very good for attacking any bad cells in her brain and spinal fluid... and is supposed to last for the next 2 weeks. I did not get the results back from the sample they took today. We are really hoping there were no blasts present. I will update on that when I know. The procedure went as planned and she was in recovery within about 30 minutes. For some reason today, this procedure really took it out of Alex. She didn't want to wake up. Nothing alarming, but was just enjoying her drug induced nap. She was freezing... and just plain miserable. I am heartbroken that we have to get her up and do a bunch more testing tomorrow. But... it must be done. At least tomorrow will be quicker and NO chemo! Tomorrow she gets all of her preliminary lab work... Ecko, EKG, pulmonary function test. It should be a fairly easy day. (I hope!)

I will update tomorrow with any other information.

Alex's BMT blood labs

Dan with the therapy dog... they have about a half dozen therapy dogs that come into the chemo clinic. They are so adorable and of course the kids love them.

This is the 'hat tree' in the chemo clinic. All the kids can take as many hats as they want basically. There are so many that are donated.

November 23, 2010 - Home Again!

Hi everyone! Wow, do I have information today. A lot of why I do these informative blogs is to give me some reference for a later time, so those that aren't interested in the details, I completely understand.

First of all, Alex is home and doing pretty well. The MRI result has shown some inflammation. There was no clear plan for this by the time we left today. So... unsure where we'll go from here on that issue. At least Alex knows that she wasn't having some phantom pain :o) I'll update when I know more about that issue. The HD methotrexate has cleared her system and she was released about 1:00 today. Much better time of day to get out of the hospital. On our way home from the hospital I got a call from the BMT coordinator with all of her pre-transplant work-up schedule and MUCH information. Here is the plan:

Tuesday, November 30th

11:30am - Oncology clinic for one more lumbar puncture. Will administer long acting

ARC chemotherapy.

Wednesday, December 1st - BMT work-up

9:00am - Pulmonary Function test

10:00am - ECKO test

10:30am - EKG

11:00am - Pre BMT labs

11:30am - consent consult with Dr. Boyer (I guess there is some type of study they want

me to know about - 30 page reading material tonight)

Monday, December 6th

9:00am - BMT clinic appointment

10:30am - Bone marrow biopsy/LP (lumbar puncture)

Possible surgery for new triple lumen port

Tuesday, December 7th - Radiation work-up

8:30am - Radiation consult - Huntsman Cancer Center

10:00am - Planning - Cranial Boost

11:30am - Planning - TBI (total body irradiation)

Wednesday, December 8th - Dental consult/check up

10:15am - Dental check up with X-Rays (family dentist)

The bone marrow people want this dental appointment done.

Thursday, December 9th (this sounds like a super fun day)

9:45am - Finance education

10:00am - Dietary education

10:30am - Pharmacy ed

11:15am - Nursing ed

1:00pm - social work

1:30pm - child life information

2:00pm - update history and physical

3:00pm - Admit consult with BMT director

Monday, December 13th

Cranial radiation - time to be announced

Tuesday, December 14th

Cranial radiation - time to be announced

Wednesday, December 15th

Cranial radiation and possible admit for new port surgery

One of the frustrating things on this HUGE "to do" list is a surgery for a new chest port. The port that was placed on the 19th of August was a double lumen port (2 I.V. accesses) and she needs a triple lumen port. This is VERY frustrating to me as the reason they were putting in the Broviac double lumen port was for a BMT. Why they didn't find out exactly what type of port should be placed is beyond me! SO... not that Alex is having so much fun and can't be pulled away for yet another surgery... but COME ON! So, we have two different tentative surgery dates. The first being the day she has her bone marrow biopsy on the 6th of December... or the last day of her cranial boost, December 15th, with an early admit for the surgery.

This is what a triple lumen port looks like. As of now, Alex only has 2 lumens.

BROVIAC® catheters are tunneled central venous catheters. The catheter is tunneled under the skin and placed in one of the veins just under the collarbone. The catheter is long enough to reach the large vein that enters the heart.

On the blood issues....

I found out what Alex's new blood type will be. She will now be A+ Not quite as common as O+ but I was urged to get people to come donate anything. Any type is great! But if anyone has A+ please come on down :o) Also, something that we need A LOT of in the coming months ahead are platelets. This is the slowest part of the blood that will recover. Many BMT patients need platelets every day. And every day will only provide a small boost of what is really needed. PLEASE GIVE BLOOD!!! I hope to have some information soon on the Blood Drive. Even if you don't live here in Utah, please know that you can hold your own Blood Drive in Alex's honor. I would be MORE than happy to give you information on getting in touch with the right people to organize this... Are you part of a church group? Have a company that would get involved? This is such an amazing and easy thing to give!!! Please help us get some blood stored up!

November 22, 2010 - Another Lesson in Patience

Hey everyone!

Well, we are still coming to you live from the inside. Hospital life can be so frustrating. The way certain things are done can completely drive you crazy if you let them. Here are a few reasons why.

Alex was supposed to get an MRI on Saturday, but because of the continuous drip chemo it had to be moved to Sunday. They cannot unhook the chemo once it's been started. Ok... I understand that. So... Sunday rolls around and finally someone comes and tells us that they won't be doing it Sunday because they have a very small crew on Sunday and since it's not serious it will be done on Monday. Not Monday morning either... Monday at 6:00pm. Absolutely stupid when our original time was 9:00am Saturday morning. But... since there is nothing you can do about it, you just have to deal with it. In the mean time, Alex is still suffering with back pain and has been on morphine this whole time. We are also waiting around for the high-dose methotrexate to vacate her body. No one really knows how long this takes. It's about there... but not quite. The next very frustrating thing is that they have decided to move Alex to the 3rd floor today because other kids are coming into the cancer floor that are more sick than Alex. Ok... understand that too... but... Can't anyone think about anything ahead of time or plan things out a bit better? I had come home to do a few things and they decide to move her, so they have Alex getting everything ready in her room... things that I have left behind... Alex was a bit stressed about the situation and I just told her to sit on her bed and let them do it all. Either that or wait for a bit until we can return to help. Jeeze! What kills me is that they'll move her down to the 3rd floor where the patients have everything under the sun keeping them in the hospital... but she can't come home and wait for the methotrexate levels to clear when they almost clear to begin with? Packing up to leave is a frustrating chore... but to do it once today and then have to do it again tomorrow... Oh, so frustrating.

Anywho... obviously no results yet on an MRI. I will hopefully be able to update tomorrow with those results. I sure hope it's nothing. With Alex, it's rarely nothing... so? So... send "nothing" vibes everyone :D Other than that, things have been going pretty well. Alex is doing remarkably well and looks great. Also, the doctor stopped by on Friday (late) and said that there were NO blasts in her spinal fluid when they did the lumbar on Friday morning. YAY! That is super good news!

That's about it here. I am really hoping we get to leave tomorrow. It would be so nice to get her home. I will update tomorrow with any new information.

Thanks for tuning in!

November 20, 2010 - A few photos

This is my good friend Dave Koz. He is a HUGE blog follower. This was his first time at the Children's hospital. It was great of him to stop by.

So... this is the view from Alex's room. Can you see where it looks like some kid is standing in the window? It NEVER moves :D

Here is Alex's HUGE bag of chemo. It has a brown sack over it because it's light sensitive.

November 19th - Make that a Triple!

Hi everyone!

Just a little update from the hospital.

We checked in today about 9:00am. They whisked away Alex's 24 hour pee sample. We were glad to be rid of it :) The doctor came in to do her exam of Alex and we talked to her about Alex's back pain. She agreed that it had been too long since the last lumbar for it to be pain caused by that. SO... she wrote for an x-ray first and then an MRI if the x-ray doesn't show anything. Because Alex was going downstairs to the procedure room, they medicated her in the clinic for anti nausea. As soon as the RTU was ready we headed downstairs for the lumbar puncture. Alex's doctor decided that he wanted to do another triple chemotherapy that she had a few weeks back. He wants to make sure that he is treating these cells that keep showing up aggressively. SO... more chemo in the spine :o( boo! (but it's good in a way) The spinal procedure went well and then we went back to the 4th floor where Alex room will be for the next 3 to 5 days. I guess with this high-dose methotrexate, they want to make sure it completely clears her system before she goes home. That is why it could take anywhere from 3 to 5 days. We are in room 4405 this time. We've been here before. This is the room where you can see offices across an open courtyard and it looks like someone has a small kid standing in the window... it's pretty funny. It's some kind of dummy... I will try and take a photo of it.

SO... after the lumbar puncture we headed to radiology for an x-ray. They did two different views and it was fairly painless for all. The x-ray people have already called with no findings. I didn't think they would find anything on an x-ray. SO... tomorrow Alex will have an MRI to see if that will show anything. A pinched nerve or something? Who knows. It is nice to be in a Children's hospital where they don't mess around with diagnosing something for very long... just order an MRI and be done with it. It would take me months to get an MRI for back pain. Anywho... that is on the menu for tomorrow. As of now we are waiting to get the I.V. chemo. They are loading her up on fluids before it can begin. This form of I.V. chemo will run for 24 hours solid.

That's about it today. We did find out that even though we THOUGHT this would be the last treatment before the transplant regimen, we were wrong :o( The doctor thinks he is going to do another lumbar procedure to make sure these resilient cells stay away until the transplant. It looks like we may be back up the Monday after Thanksgiving. YAY! But only for an out-patient procedure.

I hope everyone has a good weekend! We'll be here :o( Please send good vibes so all this crap clears her system quick!

Thanks so much for checking in! I will update tomorrow with the MRI results. Here are some photos from today.

Alex getting an x-ray on her hip/back

Alex and Dan in the clinic

Alex and I

a few photos from the weekend...

It is not easy to put photos where I want to after I have published a post, so now that I have a few photos from Alex's weekend, I will just add them here... For those just logging on, there is a post below the photos that is new information.

November 16, 2010 - Everything a go... maybe?

Day -38 (days to transplant)

Hi everyone. Just a short little update from home.

Everything has been going pretty well this week. Alex has still been having quite a bit of pain in her lower back. I am not really sure what to attribute this to?

The home healthcare nurse has been coming every Monday and Thursday for blood draws. Alex has also been on daily neupogen shots to stimulate blood cell growth. This is how quickly the blood counts will drop from chemotherapy... On Monday of last week Alex's ANC was 4500. This is a pretty normal ANC. We wondered why she had to be getting neupogen shots with an ANC this high. The oncologist assured me that her counts had not dropped from her previous 5 day stay in the hospital. Ok... I guess he knows what he's talking about. Well, the blood counts on Thursday put her ANC at ZERO! With neupogen shots. Unreal that blood counts can drop so low in 3 days. This certainly put a damper on all her weekend plans. Her dad flew in Friday for another long weekend visit. They ended up being house bound but they did have a great visit. She just loves spending time with him. It's a killer when he has to fly back home. Alex made it through the weekend with no fevers and no problems. Yay! Today we had the nurse back out for blood draws and it appears her ANC is back up to 2300! Wooohooo! That means we are right in line for the next course to begin on Friday. Well, we think. Her platelets today were 81,000. They have to be 75,000 to begin. SO... we are there as of today, but... if they go down at all?? I'm not sure. If everything lines up this is how it will go: Thursday starts the 24 hour of urine collection. This sounds like a lot of fun. Alex will not be able to leave the house because we need to collect every bit of urine from 9:00am Thursday morning until we leave for the hospital on Friday morning. We get to keep this by the toilet on ice... nifty huh? Then on Friday she will be admitted into the hospital again. She will get another lumbar puncture with methotrexate chemotherapy. It will be good to see if all the blasts are gone in her spinal fluid still. I am not sure what will happen if there are still some there. I try not to think about that. After the spinal, she will be back in her room and they will prep her for the 24 hour continuous I.V. Methotrexate. This will be an extremely high dose that she has not had before. I hope that she tolerates it well.

That is about it for this week. Nothing too exciting which is good. We have more than enough excitement to look forward to.

I will update more from the inside on Friday. Please keep up the positive ju-ju! We really need and appreciate it!

As a side note... we are trying to arrange a blood drive in Alex's honor. I would like to try to arrange this before the transplant date. I hope to have more information on this soon. I hope everyone that is able can come and donate. The blood banks are low on blood and platelets. I know we have used more than our share. I hope we can give some back. I will update with information soon.

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.....