December 30th, 2010 - Move'n On Up - Day 6

Hi everyone! We are DAY +6

Today we got to move rooms. We have had our eye on a couple of rooms for months. There are only 2 good rooms on the cancer floor. They both have a couch and a palatial bathroom. They were both occupied when we arrived on admit day. We were told it was highly unlikely that we would be able to get one of the coveted rooms since one room had a girl in it that will be there for 6 months! And the other was another BMT that was admitted just 2 days before us. Odds weren't good. Well, fortunately for us... but unfortunately for the other BMT patient, we were moved into that bigger room today. I guess the little BMT girl was taken down to the ICU late last night :o( Alex's dad and I spent a few hours making the transition today. Alex even spent a good chunk of time at her closet taking down all her postcards. Her nurse came in and said in her 10 years of being a BMT nurse that she has never seen a BMT patient being so productive. It definitely took it's toll on poor Alex today. Just being up for about 30 minutes made her exhausted. Well, we got her moved and the new room is better. Of course everything is a trade off. The cell phone signal is almost nonexistent on this Pod we're on. The T.V. isn't quite as good... and now it's a left-hand room... but there is a couch and that will be SO nice when there are more than 2 of us. So, we are in room 4404 now.

Besides the move not much is new. Alex is in a LOT of pain now. Her morphine pump has been increased and she is finding it hard to even talk now. She is also on I.V. nutrition. They have hooked up a tube she can use to suck out her own saliva so she doesn't have to swallow on her own. She was able to drink a whole instant breakfast thing today. That was incredible. She is really tired and weak. It sucks to see her so miserable. Every day that passes is another day closer to engraftment. Hopefully it happens soon!

I hope everyone has a great holiday this weekend. I will update with any new information and photos. Let's hope that 2011 brings much better things our way!

December 28, 2010 - Say Hello To My Little Friend - Day +4

Hi everyone!

Well... not much to report on which is good news. Alex has been doing pretty good. Aside from the horrible mouth and throat sores, she's looking quite great. Not great enough to allow any photos though :)

Day 3 and day 4 have been pretty much the same. Yesterday Alex had the morphine pump installed. This will be a great thing for Alex because it administers a constant therapeutic dose of morphine all the time... and then she can give herself a boost when she needs it. This will alleviate the up and down level of pain she is in. Yesterday was pretty uneventful. The doctors are still having a hard time getting her anti-rejection drug, Prograf under control. It's been continuously high and I am unsure what that means or what it effects. I mean to find out tomorrow. Today things are pretty much the same. Alex is in a lot of pain from the mouth and throat sores and she is hardly eating anything. Which is understandable. Tonight I think they will put her on IV nutrition. It's probably a good thing. I think they will let her eat as many calories as she still can... but this will give her what she really needs. Alex has also gotten platelets today. I am in the process of making Alex another Beads of Courage necklace/lanyard. I started these when she was first diagnosed in 2007 and need to make another since her relapse. It's a pretty cool program that many hospitals have adopted. It's a way to keep track of everything your child goes through. There is a bead for all kinds of different things. Like a red bead is for blood... a glow-in-the-dark bead is for radiation... a white bead is for Morphine... This is what has happened since August 17th of this year:

E.R. visit - 1

X-Ray, tests, MRI/CT scans - 14

Lumbar/bone marrow biopsy - 13 (requiring anesthesia)

Radiation - 9

New port surgery - 2

Round of chemo - 15 (there could be many different chemos in one round of chemo)

Satellite visit - 10 (this is where a healthcare prof. comes to our house)

Dressing change - 22

Clinic visits - 6

Hair loss - 1

Morphine - too much to list

Blood - 23 (units of red blood and platelets)

Hospital admits - 6

Bone Marrow Transplant - 1

Here are a few photos of the necklaces that I have made before. It's hard to tell by a photo how long each of these are. They are about 4 feet long and there are 2 of them.

The wooden head beads are for when you lose your hair. The glow-in-the-dark beads (there by the head) are the ones you get for radiation. Every blue bed is a visit to the clinic. Every red bead is a unit of blood she has needed. The white beads are morphine but I always feel bad about clearing out their supply of white ones so I don't bother...

Here is Alex's new friend... the PCA morphine pump. This little baby sends a constant stream of feel-goodness to Alex.

Still getting O+ blood until her marrow starts making A+ cells

December 26, 2010 - No Cell Left Behind - Day Two

Hi everyone... just a short update.

Well, we are + 2 days now. Everything now will be a count up to 100 (and then some). The first 100 days is very important though.

The second half of the transplant was NOT a fun process. It was very unfortunate that it had to be broken up like it did. The change over on the nurses staff and the all day event that it became was just not a good mix. I just LOVE the fact that everyone... and I mean everyone told us that the infusion was SOOOO easy. That it was the easy part of a bone marrow transplant. (although it could very well end up being that way) The brochure stated that this would be quick... like getting a blood transfusion. Well, it was not! Yes, it runs like a blood transfusion, but that is where the similarities end. This took a total of 12 hours! I told the nurse that I didn't know of any major organ transplants that took as long as 12 hours. She agreed! She said her father had a heart transplant the day before (true story) and it only took 10 hours. Sorry but WTF? So, the transplant finished about 3:00am Christmas day. Now... in theory... Alex will have a 3rd birthday. After the marrow finishes infusing they put saline into the bag and they call it "licking the bowl." They want to make sure they get every last cell they can. It's very strange... there are fatty cells that are present in the bag also and they have to be rubbed and broken up. They leave no cells behind. The process was a lot more stressful than the first bag, which seemed to go so smoothly although lengthy. Alex's heart rate kept going really low... in the mid to low 40s... and her blood pressure was gradually increasing as well. It was very stressful for all. The nurse could not leave the I.V. pole but her vitals needed to be done. If the nurse left the IV pole to take her vitals the infusion quit dripping... I felt bad for the nurse, who did not get a break or was able to leave the room for over 5 hours! No lie. At least she didn't have another patient that night. In all... I have to say... I thought the process was not taken as seriously as I thought it would be. Alex stayed awake this whole time. She was so tired and nervous. As soon as it was complete she threw up an entire pink bucket full of who knows what? She hadn't eaten a thing all day. I think it was a pink bucket full of adrenaline. We were all really glad to have it over. It was a very emotional day, filled with hope and fear.

Alex has been feeling pretty bad. She will get worse before she starts to improve. That is just the nature of getting a bone marrow transplant. I do hope they get her nausea issues ironed out so she only has to deal with the other garbage she is dealing with. Yesterday she was sick ALL DAY! She threw up everything and things she hadn't even eaten yet. She was in and out of it most of the day. But sleeping is far better than being awake and miserable.

Today Alex is feeling much better in the terms of nausea. She is still in a lot of pain and has been on morphine all day. Still no morphine pump. She is scheduled to get platelets today at some point. They told us that this morning and it's now 3pm and they still haven't showed up. I am sure they will at some point. At least Alex has been awake all day. We are watching the Blues Brothers now... and she is actually laughing. So that is a good sign :)

Well, that's about it to report on. I just knew that a lot of people were wondering how things were going since the transplant so I thought I would update everyone.

I hope everyone had a great Christmas. For me, it was kind of a blur. I'm not really into the holidays all that much, so I didn't feel like we were missing out on anything. I am glad the crowds will disperse a bit. If only spring would come with the closing of the holidays. That would give me a big, warm fuzzy! :o)

Thanks so much for being here everyone! I will update more in a day or so with new photos.

December 24th, 2010 - Gold, Frankincense, Myrrh and Marrow - Day 0

And the wise men brought... Gold, Frankincense, Myrrh and Marrow

Day ZERO!

This will be a daily account of things…

We are all up at the hospital and waiting. I don’t even know for sure if the little marrows have arrived. I think they must have, but I can’t wait to confirm this… I have just given Alex a shower and put new sheets on her bed. My friend Natasha gave us some adorable Christmas sheets, so I have chosen them for the festivities. Thanks so much Natasha for the great care package!

Woohooo! The little marrows are here! They are in the process of being cleansed. They think they’ll even start earlier than expected. So… at least those little suckers made it in on the airplane. It was so foggy last night I was thinking “oh! no! you! don’t!”

Alex’s counts have reached zero today. Her own bone marrow has officially stopped making cells. Even though this sounds super scary, it’s what they need to happen for this new bone marrow to find it’s home.

They are running more blood labs on Alex right now. They are checking the anti-rejection drug, Prograf level. They want to make sure the level is just right before the infusion of the new bone marrow.

I wish I could personally thank the incredible donor that took time out of their holiday season to donate these stem cells that will save my daughters life! Thank you thank you!!! I so hope we get to thank you in person in a year’s time. If Alex survives the year, and both parties agree, they will give us all the information on the donor. Right now all we know is the marrow arrived by plane… from a 26 year old female that has, at one time, traveled to Europe.

There is a lot of Christmas cheer up at the hospital today. There are SO many donations of great things for the kids. I think a lot of parents past know the feeling of being up here at Christmas. Most donations seem to come from past patients. There is a kid across the hall that is obviously celebrating Christmas in his room. It’s packed full of gifts! I am so glad we had our Christmas prior to coming here. There is little room in the room as it is.

Well, we just learned some new information. The BMT team came in and said because there is some major incompatibility with Alex’s blood type and the donor blood type, that the infusion is going to be a bit different and lengthy. The cleansing process of the marrow is to take out as many red blood cells as possible. During the spinning of the marrow to remove the red blood cells, they have to add saline to the cells that remain. This creates a lot more volume of product. Because the volume is so great but she still needs all the cells that remain, they have to break up the infusion into two different parts. Sooo… our hour and a half infusion time is now a total of 8 hours of infusion… with a four hour rest period in between bags. This process will finally be complete somewhere around 2am. This definitely stressed Alex out. But… after hearing about the reasons it makes more sense.

So, I met the guy from the lab that came over with our cooler of bone marrow. It was really an incredible situation. The lab guy stays until it gets hung on the pole and it starts to go. The doctor and the BMT nurse verify the product with the lab guy on several different occasions. In addition to all this, we had several others stop by with good wishes, gifts, and a very rare t-shirt. They normally sing Happy Birthday also, but Alex was very firm on the “please no singing!” It took about an hour for things to get underway, so a bit stressful to have so many people in the room for that long. It was a good thing we decided that there would be no visitors today.

It is now 3:00pm and the bone marrow has been flowing about 20 minutes now. It’s proving to be a stressful infusion. Dave, (our nurse who I handpicked yesterday) has to stand at the IV pole the entire time. Bone marrow is not run through a pump system like everything else on her IV pole. The pumps injure too many of the new cells, so it’s all done by gravity. To make the infusion last longer the nurse has to open up the valve, let a few drops in, and then close it off.

So… we are watching the Sopranos and waiting for this first bag to finish up. The nurse is getting an education in the Italian mob scene. It’s a strange program to be on the TV up here at the Children’s hospital.

Thanks for tuning in everyone. I hope you enjoy the photos of the day. I gotta say… watching the lab guy bring in the cooler with my baby’s new bone marrow, brought tears to my eyes.

Merry Christmas everyone!

Alex with her Christmas sheets

The cooler arrives! Dr Boyer and the lab guy pose for photos. This guy has worked on these cells most of the night.

Two tiny little bags of marrow... both hooked up to digital thermometers

The Three Wise Men

Double and triple checking...

Only a few people have one of these t-shirts... says "recipient" on the back

Dave (our nurse) checks the marrow one more time

And off we go...

December 23, 2010 - T'was the Night Before - ONE day to transplant

Merry Christmas eve eve...

I have very little to report on but I feel I must write on the day before the big day.

Today was supposed to be a rest day for Alex and it's been anything but. I think it's kind of frustrated her that there has been so much happening for a day she was looking forward to doing nothing. Oh well... such is life here at the hospital.

Alex hasn't felt very well all day and hasn't wanted even her favorite visitors :( Even Paul, the psychologist couldn't cheer her up :( It's just been a weird day. I think MANY things are weighing on her poor mind and I can't do much to alleviate that.

Alex was scheduled to get more globulins today and I think it stressed her out the entire day. After that bad reaction, it was just hard to distract her. Well... the good news is... the globulins ran PERFECTLY! wooohooo! I am so glad that she had a good experience with these today. She is going to need many in the days to come. She has perked up considerably since the infusion.

So... tomorrow is the big day. They tell us around 3pm. I will update the blog with any information. Please send your prayers, juju, mojo... whatever! We need all of them! Thanks so much for tuning in and I will post tomorrow with fantastic news!

December 22, 2010 - Chemo Complete! - 2 days to transplant

Hello everyone!

There isn't a whole lot more to report on from yesterday but thought I would give an update all the same.

Today Alex's is getting 2 units of blood. This was the lowest I have seen her red blood count get before they have infused her. She should be all tanked up by the end of this evening. A few exciting things have happened today. The most import one is that Alex has finished her last round of chemotherapy...forever we hope! She will get some therapeutic doses of a type of chemotherapy once the transplant happens, but just to tone down the new stem cells. NOTHING like chemotherapy you get in treatment. SO... Chemo is over! That is fantastic! Another great thing is the 3 showers a day are over. These have been awful for Alex. With the new surgery site, it's just bad. After every shower the nurses have to come in and scrub the surgery site and put on a new bandage that has to wrap around her chest. She could not have any tape on her skin with that last chemo. Having an exposed wound and then showering it 3 times a day has been traumatic for Alex. Now that's over. Today also started the first dose of the anti-rejection drug, Prograf. Alex has 6 different pumps on her IV pole today. She has fluids (still need to keep the bladder working) anti-nausea, antibiotics, blood, Mesna (the rescue drug for Cytoxin).

Well, we have 2 days until transplant. I am about ready for this to happen so I know the donor did their business and we are on our way :) Hopefully we get some information tomorrow about what time this will happen on Christmas eve. It will all depend on when the bone marrow arrives and how long it takes to wash the red blood cells from the collection. OOH... learned something today about platelets. It takes 6 different people to make up a bag of platelets. This is why everywhere is always in need of platelets.

I hope everyone has a great night! I will update more tomorrow...

Alex got an adorable animal from Scentsy

Alex getting 2 bags of blood

December 21, 2010 - 3 Days to Transplant

Hi everyone!

Just a short update since there isn't much new to report on.

Alex is doing surprisingly well. We are still going through the 3 showers a day and they are NOT fun for Alex. Tomorrow at 2pm we'll be done with showers. All of us are looking forward to that. Today started the chemo called Cytoxin. This only ran for an hour but the rescue drug Mesna runs continuously 24 hours a day. She also has many fluids running because this is the stuff that is really hard on the bladder. She will get the same dose of Cytoxin tomorrow. Thursday she'll get a rest day. Today Paul the psychologist came to visit. He's always a welcome visitor around here. Alex just loves chatting with him. This I.V. pole is slowly growing. She is hooked up to 6 pumps now. We are told that's nothing... scary!

We've had lots of great Christmas goodies dropped off by generous people around here. Some very nice person dropped off a gift card to the hospital cafeteria for the parents here. SUCH a thoughtful gift. Even though it's the worst place to eat EVER!!! It's still a nice place to go grab a drink or something.

That is about all that's fit to print today. Nothing too exciting which is good. Thanks everyone for tuning in. We appreciate everyone's support so much! I will update in a few days with more information and photos. I hope everyone is enjoying the last few days of Christmas shopping. I'm so glad we are done with ours :o)

Alex and Paul (the psychologist)

Some awesome guy did this today!

Alex's growing I.V. pole

December 19, 2010 - You Did What? - 5 days to transplant

Hi everyone!

First let me start off by thanking everyone that showed up to donate at the blood drive. THANK YOU!!! What an incredible turn out. We had 50 people show up and 35 of them were able to donate. Very cool! I am hoping to put together another blood drive in February. This one will be in Salt Lake City, and we're hoping that we can get a date that will enable anyone that donated this time to donate again.

There isn't too much more to report on since I last updated the blog. Alex finished radiation yesterday evening. It was a frustrating day at the Huntsman Center. Their equipment kept breaking down and Alex had to patiently wait each time for them to get the machine up and running. BUT... she is now done with radiation forever I think. I think she has had a lifetime maximum of radiation. SO... here's hoping we never need it again!

Ok... funny story... Alex wanted a cup of coffee yesterday. She can only have prepackaged, instant coffee because of sanitary concerns. So... she calls the nurse's assistant (they are called techs) and asks her for cup of hot water so she can make her coffee. The tech comes back with the cup of hot water and says "Well, I know it's hot enough because I put my finger in it." Alex's dad followed her out the door and said "Did you just say you put your finger in my daughter's water?" And the tech says "OH YEAH, I'm not supposed to do that with a bone marrow patient!" WTF??? I am hoping she doesn't put her finger in anyone's water! It has been the source of many jokes around here now...

Alex is now hooked up to the Thiotepa. This will infuse over 4 hours. It's a TINY bag to be infusing for this long of time. This is the stuff where she has to shower 3 times a day... change clothes 3 times a day... and change her bedding 3 times a day. AND the water problem still isn't fixed, so we have to go to the tub room to deal with all this. FUN! They are supposed to be installing filters on all the rooms tomorrow. We are in line to be the first room. (I hope!)

There are definitely a few differences up here when you are a BMT patient. One of the first things I noticed is when they take Alex's temperature every few hours they use a standard digital thermometer under her armpit. This is axillary temperature. This is the most noninvasive way to take a temperature and said to be best at determining low grade fevers. I thought that was interesting. Another thing that is interesting is the mouth care regimen. She has to do a series of things 4 times a day. She has to brush... then she has this prescribed rinse that she has to swish and spit... and then she has another product, Nystatin, that she has to swish and swallow. This medicine is used to treat fungi and yeast. Her mouth is a big risk for infection since the mucus cells are one of the most affected cells with chemo. This is why mouth sores are so common. I am glad they are so diligent about mouth care.

Well... that is about it today. Alex is definitely not as perky as the last few days. But that was expected. I just hope she can get through all this with as little sickness as possible. Her surgery site is still very uncomfortable. Hopefully that gets better soon.

I can't believe we are only 5 days to transplant. I'm definitely getting a LOT stressed out. Please send MANY anti-rejection vibes!

Thanks for being here everyone! It's so great to see how many people are reading about Alex's journey! I will update more in a day or two.

Alex playing around at the Huntsman Center.

Here is a picture of the lead plates that rest on Alex's chest. She likens their shape to a couple of steaks :)

Alex's first bag of chemo today... It has a brown shield over it because it's light sensitive. This is the one that secretes out of her skin.

December 16, 2010 - A Whole Lotta Something - 8 days to tranplant

Hi everyone!

Well... tons to report on since my last post. We are now all checked into the hospital and most things have been put away for the duration of Alex's stay. She still has some posters to hang but most things are in place and Alex feels she has a little piece of her room here at Primary's.

I spent most of Tuesday preparing for Alex's hospital stay. All of the clothing that she wanted to bring had to be freshly washed (even if it had already been washed and was hanging in her closet) and then dried and then immediately put into bags to bring to the hospital. This wasn't hard work, but it sure was time consuming. I ended up with 4 big garbage bags full of ziplock bags of clothes... and another bag of odds and ends.

Alex had her last dose of cranial radiation yesterday. My best friend Cindy came with us. It was great to have her with us for the day. We went to the Huntsman Center for the radiation appointment and then immediately to the hospital to get settled into her room... Her new port surgery was scheduled for 2:30 We had a few hours to decorate her room and make it more personal. I think it will go a long way in making Alex feel more at home.

I met with the surgeon and we discussed the new line placement. This was a surgeon that the BMT team recommended. He seemed nice enough. They took Alex back for surgery and Cindy and I went to grab a cup of coffee to wait it out. After about an hour the surgeon came into the waiting room to tell us that the procedure went fine. When Alex finally woke up from all the anesthesia she was in a lot of pain. The new port had to be placed on the other side of her chest so between taking the old port on on the left side... and the new port on the right side... both sides of her chest were killing her. This procedure SHOULD have been done right the first time... and even with needing it replaced, it should have been done weeks ago. It's just complete BS that she has to go into all this with the soreness of a new surgery on top of everything else. Crazy! A big "THANK YOU" to Cindy for spending the day with us. I know Alex really enjoyed your company. You were such a huge help!

This morning was Alex's first round of TBI (total body irradiation) Alex's nurse's assistant took us downstairs to a security van... they drove us up the hill to the Huntsman Center. I was able to go back with Alex to see the room where she would have the TBI. On the table were a set of lead blocks that they would be placing on Alex's chest. This was going to hurt. These lead blocks are shaped like lungs and they were made especially for Alex in the shape of her lungs. They did a series of x-rays to make sure the leads were put in the right place. Her first TBI took over an hour. The radiation itself takes about 30 minutes.

One fun thing that is going on at the hospital this week is a water problem. Apparently they found some chemical in the water that was not acceptable and ALL the kids have to go to this special "tub room" to take a bath. Alex has to bathe at least once a day right now so this was a special activity that we got to do today. I hope they get this problem fixed by Sunday when she starts the one type of chemo where she has to take 3 baths a day. Uggg! Please send good water vibes now :o)

Alex's dad is flying in today. I can't tell you all how happy I am that he'll be here helping me with all this.

Calling out a very special "HAPPY BIRTHDAY to my bestest Kansas friend Debbie!!! I love you! You are such a great friend!

For all the special people in my life that have sent Alex such amazing things... She wishes she could thank all of you personally. She was doing so good at getting "thank you" notes written and sent out... but is just not feeling up to it lately. Please know how much we both appreciate all you do! I do have to call out a HUGE "thank you" to a special woman, Linda, that reads the blog... and to whomever helps her with her generous donations to many... Thank you to the group of people who sent Alex the big collection of goodies for Alex. She was thrilled to see the box set of the Sopranos! She is so excited to watch it while we are here. And all the other supplies will go far in helping me with this process. Thank you SO much Linda and all her little elves.

And for all the local readers of the blog.... Please try to remember the blood drive that is this Saturday (December 18th from 10am to 2pm). I will try my hardest to make it, but am not sure at this point with where Alex is in her treatment. Thank you so much to all that can make it and donate. I will really try to be there. It's a great thing to do this holiday season!

Everything all ready to be packed up

Some sealed Christmas ornaments for Alex to hang in her room

Alex's cranial radiation mask. The gray tabs are inserted into the table to keep her head in perfect position.

Alex and Cindy hanging up posters

Alex's room decor

The stick-on tree that my cousin Rian gave Alex... it's adorable and hanging on her bathroom door.

The cute tree that I got for Alex's room

The view from Alex's window... not bad

Room decor... My bestest buddies in Kansas made the cut for room decor. I don't even have MY photo in her room :D Deb and Rich do a take on American Gothic.

Alex's chest X-Rays for the TBI (total body irradiation)

This is the strange contraption that Alex has to sit on for the total body treatment. She has to sit here for 30 minutes.

December 13, 2010 - Demon Globulins! - 11 days to transplant

Hello everyone!

Well, it was an eventful day for us. I wouldn't say in a good way either. It started out so nice and so unfortunate that it didn't stay that way. That is one thing I will say about all this... you just never know from one minute to the next what will be thrown at you. First of all... a couple things happened since the last post. On Friday, Alex's radiation doctor called and wanted to see us 30 minutes early on our appointment today. And then... Sunday I got a call from the clinic saying that Alex's test they did on Thursday (remember the snot test) came back positive for Rhino virus (common cold) and they wanted to do an IV of globulin today after the radiation appointment. Ok... no biggie... should we come before the radiation appointment? No they said... the infusion will take about 3 hours... so you better come after. NICE!

We started out our drive up to the Huntsman Center joking and laughing in the car. (Time 10:02am) In a blink of an eye Alex was sick in the backseat and miserable. SO, we show up 30 minutes before our scheduled appointment. Alex is sick and laying on the couch in the waiting room. Finally at our scheduled appointment time I went back up to the front desk and made my frustration known. We were finally shown back to the examination room. The doctor finally stopped by at 10 minutes after our regular appointment time. NICE! He said he forgot to talk about a common side effect when we met with him last week. That side effect is cataracts. He said with the amount of radiation that she received 2 years ago in combination with this round of cranial radiation, mixed with the total body radiation she'll receive this week... that she is almost certain to get cataracts. BUT... he did say that was fixable. That she'll probably have to have cataract surgery in her 40s instead of like an elderly person. Ok... fixable... we can deal with that.

After we met with the doctor they took Alex back to do the planning session of the cranial radiation procedure... as well as the procedure itself. If you remember from last week, the machine was down and they were not able to do the full planning session. After the cranial procedure they needed to do a chest x-ray for the Total Body radiation... this was done for the lung plates they will make before that procedure takes place. They also did a practice run while she was in position. We could not go into these appointments with her and it seems she was really upset while she was in there. It broke my heart when she came back into the exam room and then broke into tears when she saw me. Uggg! Dan and I got her settled down and cheered up and decided to go to the rooftop cafeteria and have some lunch. We had to go to the oncology clinic after for the infusion so we thought we'd make the best out of our break. The cancer center is gorgeous! When they get all the inpatient rooms done it will be amazing!

We went to the oncology clinic at Primary and were put in a room to get started on the infusion of Immune Globulin. This is a blood product found in plasma. They did some premeds and gave us 30 minutes for those to get working. The nurse came in to hook up the IV of globulin and hooked Alex up to a blood pressure machine. The infusion was to last 3 hours... the infusion goes in stages... starts out very very slow... and then progresses as long as vitals are good. Alex and I were watching 30 Rock and laughing and Dan was doing homework. We were only about 20 minutes into the infusion when Alex says to me "Wow... they were right... this stuff does give you the chills." Her teeth started chattering so I pushed the doctor button. Within 10 seconds she was convulsing and she was looking really really bad. A team of 4 clinic personnel were in there stopping the infusion and ordering drugs to stop the effects of the globulin. It was very scary to watch. After they administered the drugs to help with the side effects we had to stay there and wait for a long time. It took Alex a while to settle down... she lost her entire lunch... and was just plain miserable. They took some blood labs while we waited to see if there were any other infections brewing. We'll see about those tomorrow I guess. The day was ruined and so were our plans for our night. It was really unfortunate since we only have these last 2 nights at home. Instead of our nice night at Alex's favorite Greek place, we stopped by Wendy's (something that always seems to stay down) and then came right home. (time 6:42pm)

Well, that was about it for the day. It was too exciting! Tomorrow she has to go in for another cranial appointment. It shouldn't last that long and we'll be able to come home. I do hope she is up for doing something tomorrow since it's her last night at home for a very long time. Tomorrow, in addition to the radiation appointment, I have to wash all of Alex's things that she wants to take with her to the hospital and put them all into ziplock bags and then into clean garbage bags for transport. I just hope our day goes as planned and Alex can enjoy part of it.

Thanks for tuning in everyone. I will update more tomorrow. Tonight I think it's time for a big glass of wine. Like maybe a BigGulp size?

Alex and Dan in happier moments today...

Alex's demon globulin product

This is the kind of sign you get on your door when you are positive for some sort of infection. We joked that Alex was leaking some sort of hazardous waste.

The view from the Huntsman Center

Alex in the Huntsman Center

The rooftop restaurant in the Huntsman Center... windows on 3 sides

The view from the Huntsman Center. The building just beyond the heli-pads is Primary Children's.

The lobby of the Huntsman Center

December 9th, 2010 - Special Ed - 15 days to transplant

Hi everyone!

Well, in keeping consistent with most things in our life, today was much longer than anticipated. We did, however, get a lot of information.

Our first appointment was with the dietitian. She was very informative. We learned that Alex would get a special menu as soon as she is admitted. It's called a microbial diet. The hospital kitchen is trained in preparing special meals for the bone marrow kids. We learned that the kitchen will also buy any special items that Alex might want that are not on the menu but are allowed. Like individual Lynn Wilson burritos. They don't stock them... but if we give them a list of things that Alex wants, that they don't have, they will send someone out to buy them and keep them stocked. They would rather have the kitchen do this than me. They want to be sure that it's stored right and prepared right. I think this is a fabulous idea! Unfortunately it sounds like Alex will be on TPN (Total Parenteral Nutrition) for a lot of her stay in the hospital.

The next appointment was with the pharmacist. He was very interesting also. It is just amazing the mixture of drugs that are used in this. After the 6 days of radiation treatment Alex will start on the heavy chemotherapy protocol to prepare her body for the new stem cells. The first chemotherapy drug is called Thiotepa. This is a new chemotherapy and has some interesting side effects. She will receive this for 2 days. This chemotherapy is secreted through the skin so Alex will have to be bathed 3 times a day while getting this drug and for 2 days after. 12 baths in 4 days! Crazy! The next chemotherapy is Cyclophosphamide. She has gotten this chemotherapy previously. This will last 2 different days and comes with the rescue drug Mesna. Alex will also receive a low dose of Methotrexate after the infusion of the transplant to suppress the new immune system. The other drugs used are anti-rejection drugs and infection prophylaxis. She will be on anti-bactierial meds, anti-viral meds, and anti-fungal meds. They are SO worried about any type of infection that the doctor who was talking to us saw that Alex was sniffing... blowing her nose a couple of times... and he says "what's going on there? How long have you had that runny nose?" She said "oh, just a runny nose... had it for a few days." He instantly brought someone in to suck out some snot from her nose. Has anyone seen this done? They do not do this with those little turkey baster things you used on your babies....no.... They come in with 4 feet of plastic tubing and hook it to a vacuum that is built into the wall and they stick a smaller hose down her nose and suck a bunch of fluid out of her nose to test. That was interesting. They do NOT mess around.

We also learned that Alex's donor is a female... age 26... and has traveled to Europe in the past. Because of the whole "Mad Cow" incident, this information has to be disclosed. We learned that the bone marrow will have to be "washed" to remove all the red blood cells from the harvested stem cells. A+ and O+ blood don't play well together at first. So... they take out all the red blood cells. She will not get A+ blood until her new bone marrow begins to graft and they start seeing A+ blood show up. It's a really interesting process. She will be getting blood products daily since her own bone marrow will not be functioning and the new bone marrow will take several weeks to engraft. Engraftment starts anywhere from day one to about day 30... there is a contest that takes place. Alex will have a calendar set up in her room and people (everyone here included) will place bets (any dollar amount) on what day you think engraftment will take place. The winner gets the title of knowing the engraftment date and Alex gets the money to buy something fun for herself. :O)

The last person we met with was our social worker. We tried to make a quick escape but she caught us. I know she thought it was going to be a hard talk, but luckily I had already had this talk with Alex a month ago. It was about a healthcare directive. A talk that you should not have to have with your 20 year old daughter. Alex has appointed me her agent in the event that she cannot talk or make decisions for herself. She has filled out the necessary paperwork relating to her wishes for prolonging her life under different circumstances. These were very difficult conversations to have.

That is about it for today. It was a long day. We learned a lot and feel like we are as prepared as we can be. The doctor doesn't really try to sugarcoat anything. He says to be prepared for anything. I can't believe all of this is starting next week. YIKES! It's so incredibly stressful that I find any distraction that I can right now. I don't know how you can really be ready for all this?

Thanks for being here... and boy do we need your ass-kicking vibes! Talk to you all on Monday with more radiation information. Have a great weekend everyone!

December 8th - Dental Exams - One week to admit and 16 days to transplant

Happy Hump Day everyone!

Everything went great today on our journey up into the North country. :o) Our dentist is up in Layton as well as some of our doctors. When we moved to Salt Lake 3 years ago we had every intention of getting new doctors, dentists and all that type of fun stuff. Unfortunately Alex was diagnosed with cancer the week we were moving into our new place and all of those things have been forgotten about. I keep telling myself, to somehow justify the journey, that there are a lot of people that travel a whole lot longer than 30 minutes to see some of their doctors. There are so many great aspects of living in the city of Salt Lake. Everything is relatively close by and we have been spoiled with how close everything is for Alex. We are fortunate I should say. But during all this time, I haven't made it a priority to find us new dentists or other routine doctors. I think it's a matter of calling the insurance companies and finding out who takes what and I just don't have it in me. I spend SO many hours on the phone with both doctors and the insurance company that it's not worth it to me to switch. SO... we all drag ourselves to Layton every so often to get things done. Usually I try to set up lunch with my BFF, Cindy... but today she wasn't available, so the 3 of us went to one of our favorite haunts after all our dental fun. The Burger Bar. For all you Davis and Weber county friends, you'll know the Burger Bar. It's a little piece of delicious heaven all soaked up in some Utah fry sauce! YUM! We ended up having a great lunch together.... in our car.... because that's the only way you can eat your meal at the Burger Bar. (this part doesn't thrill me)

SO... we are a week away from Alex's hospital admit. She seems VERY anxious to just get it going. I have things all over the house that are ready to go to the hospital. She needed many new, unopened things for her admit. We are still in need of super large ziplock bags... the kind you can put blankets into. And if anyone knows anyone in the food service business please email me... I need packets of mayo. I cannot locate these anywhere, so I am assuming I probably need to get some at a restaurant supply company.

I want to thank everyone that has contacted me about the upcoming blood drive. It brings tears to my eyes to see the response we are getting. I am going to do my VERY best to be there! Alex's father will be in town, and as long as Alex is stable and everything is good up at the hospital, I will be there! I guess I feel like if I can give back in any way to all the people out there donating to us... it will make me feel better. It's something I can do.

I find myself thinking about the donor... Where does he live? What is he doing now to prepare for his donating process? Is he taking care of himself :o) Will he cancel at the last minute? I am sure these are normal thoughts. But they are stressful. I mean, what happens to a poor kid that has just undergone the preparative stage only to have a donor cancel? I know I can't think like that... but those little thoughts creep in now and then.

Tomorrow we have our Bone Marrow education workshop. It's funny... We are the only ones at this stage in a BMT at this time at the hospital, so we'll be the only people in all these little classes. We are going to sluff the "child life" class and also the "social work" class. These two classes are in the middle of the day, of course... making it necessary for us to go back and finish up the areas that we do need to be present for. This will be an all day appointment. Maybe we can go have a great lunch again. We are trying to take Alex somewhere every day to one of her favorite places. She cannot have restaurant food for the minimum 6 week hospital stay. And she cannot have any restaurant food for the 100 days after transplant either. SO... we are cramming her with good food for the next week.

Another cool thing is... get this... Alex gets her transplant on Christmas eve and the first 100 day count up is extremely crucial. Guess when the 100 day mark is? April 3rd. Her 21st birthday exactly! This is the kind of math that Dan does when he isn't sleeping :D

I will update with all our ooodles of information we are sure to get tomorrow.

Thanks for being here with me!

December 7th, 2010 - Come In... It's Broken

Hi everyone!

So... it was not such a productive day. We arrived at the Huntsman Cancer Institute early this morning for a cranial workup and also the planning for the Total Body Irradiation. Alex got as far as the mask made for the cranial part and that was about it. The machine that they need to finalize everything for both the cranial and the total body was broken. Go figure. The woman that was arranging all the planning found me to tell me the bad news and told me that we would need to come back in on Friday to finish up the planning sessions. Well.. I decided to exercise my right to say "NO!" I told the woman that Friday was the ONLY day that we were not going to the hospital for one test or another and I was NOT dragging Alex there on Friday. I said we would be up at the hospital both Wednesday and Thursday for other tests and that they had better decide what day would work for them on the days we would be there. They decided to have us come in earlier on Monday (the day the cranial radiation is to start) and they would do the rest of the work up before the first treatment of cranial radiation. It will be a longer day, but we will ALREADY be there! I told her that the poor kid only has a few days left before she will not see the outside of the hospital for a LONG time. Friday is going to be one of those days. Period.

The consultation with the doctor who is in charge of this type of radiation treatment was very informative. I will say that everything that he told us would scare the crap out of any normal person. For us... the radiation just seems like a detail that we have to have done before the really scary stuff. Here are some of the radiation details... The total body radiation will take place with her standing up against a wall where the machine can project the radiation onto her whole body. The treatment will last 30 minutes each time. I guess with the machine being far enough away to include her whole body makes it so the photons take longer to reach everything they need to reach. Alex will be getting 18 Gray of radiation. This is like a "wattage". Alex received 12 Gray to the total brain back in 2008 and because radiation is cumulative she will only get 6 gray to the brain this time.... adding up to the 18 Gray which is said to be the biggest dose they can give Alex. It all gets a little confusing. Alex will have some lung protectors in place for the total body irradiation to cut down on how much they will receive. It won't totally keep them from getting any radiation but it will help. The other bad news to all this radiation, that is almost for certain, is it will make it impossible for Alex to ever have children. The doctor told us that 50% of the women who get half this dose of radiation have become sterile. For Alex this doesn't seem to be something that makes her too worried or sad... but I just know that things have a way of changing when it comes to wanting or not wanting children. There are so many different side effects from all this radiation. The dosage is designed to kill the bone marrow. If that doesn't tell you anything... One thing that Alex has in her favor is she is done growing. This could have long term side effects for those children who still have growing and other developing left to do.

Well... that is about it for the HUGE radiation work-up we had planned today. A big waste of time... Dan took the day off, so that was a big waste... things like this are frustrating, but nothing we can do about it. The 3 of us did have a nice lunch together anyway :O) Ooooh, and while we were at lunch, on the other side of town, I remembered that we were supposed to stop by the clinic for Alex to have a CBC (blood test) done. SO, for kicks, we got to run back up to the hospital for that. At least it was quick.

Tomorrow is another busy day. I hope that we are able to get everything accomplished. All 3 of us are heading north to Layton for our dental check-up. Alex must go for part of the bone marrow work-up and since we'll all be there... we may as well get that done also.

On a positive note, Alex seems to be doing really well today. She is lively and talkative. It's been a really nice day in spite of it all.

Thanks everyone for tuning in! It is so nice to have this support system. I don't know what I would do without you all!

NOW... let's talk BLOOD! The blood drive has been scheduled. At least one of them has. We are hoping to get another one going in the Salt Lake area soon, but nothing has been done yet. We do have one scheduled for December 18th... 10:00am until 2:00pm at 2300 University Park Boulevard, Layton, Utah (LDS chapel) Please email me if you can make it. ARUP will not do the blood drive unless we have enough people signed up to come. Please come and donate! It's so easy to give and it does so much good! Also... one thing we need the most of, and any blood type will do... is platelets. Platelets are very much needed all the time. They are a HUGE treatment in Bone Marrow Transplants. Platelets last only 5 days so they are needed on a continual basis. Like I said in a previous posting, Alex will need platelets almost daily. This type of donation is not as easy to do. It's safe... and you can actually donate platelets every 7 days... it's just not as easy as showing up to a blood drive. They don't have blood drives for platelets. You have to go to their facility and they take out blood like a whole blood donation, but then a machine spins off the platelets and takes them and the red blood cells are put back into your body. The machinery is a little more intense making it difficult to take on the road for a blood drive. Unfortunately. I am trying to get some small groups who are interested in going with me to donate. I think it would be much more fun to have someone to talk to while sitting there doing this. If anyone is interested, please please email me. sburbank35@aol.com If you want to make your own appointment to donate platelets (and PLEASE PLEASE DO!) you can click HERE.