December 4th, 2010 - A Christmas to Remember (20 days till transplant)

Merry Christmas everyone! Well, maybe not for everyone, but for us it was a very merry Christmas.

Since my last post there hasn't been too much happening. Alex was SO good the day we did the ECKO and all... but boy did she take a turn the same night. It's so frustrating that it's so unpredictable. Alex had a really rough couple of days following. We ended up getting her on some steroids that are seeming to help. I just hope they don't make it hard for her to get around for the 3 days after they end. We'll see. One bad thing just leads to another. It's just a matter of deciding what bad thing you can deal with at the time.

It's been a strange few days; filled with a lot of emotion. I thought it was bad watching Alex endure all this sickness... but it's SOOOO much harder seeing her so scared. In the last few days she has been on the verge of tears constantly. That is hard to watch. I wish there was a way for me to make this less frightening for her.

Alex has been enjoying time with her dad and her stepmom. This visit has definitely been different. You can tell that it's all catching up with her. She has so much on her mind and is finding distractions much more difficult. I hope we can try to take her mind off of things over the next few days while she is home and doing fairly well.

I will update more on Tuesday with the radiation consult information.

Alex and I

Alex unwrapping her super cool tapestry that I got her at the Cluny in Paris.

Alex's grandfather, Carl... in his new Snuggie!

The Thomas's

December 1, 2010 - A Big Hard One (23 days to transplant)

Now for today's events...

We had to get up early and arrive at the hospital for 3 different tests. The first test was the pulmonary function test in the PFT lab. We have tried to make up funny names for this acronym for years. I won't tell you them because most of them are obscene. Anywho... we started out at the PFT lab. This consists of a two room space. Both labs look equal. There is no check-in counter, no nothing. You would totally miss the door if you didn't know what you were looking for. Basically Alex sits in the chair and blows into this thingy. She has to hit a desired field and she has to do it 3 times in a row. SO.. the woman administering the test would do the coaching "BLOW BLOW BLOW.... A BIG HARD ONE!!!" For The Office lovers out there... Alex and I both said "That's what she said!"

After the PFT lab we had to go to Cardiology. This is where they do the EKG and the ECHO. Alex wanted to go there alone so no photos. It seems that they have all the views they need of that stuff now.

For a few updates since yesterday...

Alex's CSF results from yesterday's lumbar puncture were excellent! No blasts present! This is great news for her BMT. The better this stays in remission, the more successful this will be. Cerebrospinal fluid (CSF) analysis is a set of laboratory tests that examine a sample of the fluid surrounding the brain and spinal cord.

On a not so great note... We have learned from Alex's x-ray last inpatient visit, that she already has some Osteonecrosis. Some of her bones have literally died from the prolonged steroid use during the course of these last 3 years. So far, they are finding this on her hips. SO... hopefully we will have more luck with the other steroid that they will use after transplant. They will use steroids to battle the GVHD (graft vs host disease).

The strange breathing chamber

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