October 27, 2010 - A Meeting Among Us

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

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

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

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

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

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

October 23, 2010 - A puzzling week at home

Hey everyone! Just an update from home...

Well, let's see... we were discharged Saturday about 2:00pm. It's always so nice when things happen before you think they will. Alex was SO happy to leave almost a week early. I still don't know if they just needed the bed, or if she really was ready to go home.

Our first few days at home weren't really fun. Alex didn't feel well at all. She wasn't running any fevers and things were fairly calm, but she really was in bed the entire first few days. She seems to be feeling much better now. On Monday morning the home health nurse came and took blood... then we wait and see... it usually takes half the day for the lab to get all the counts in. As it turned out, her red blood count had stabilized and her white count had risen to 1,000 since Saturday. Unbelievable! They decided I could discontinue the I.V. antibiotics and also the neupogen shots. All great news... BUT, Alex's platelets were extremely low so they said to come right up. So... off we went to the clinic to get some platelets. There was really only Sunday in between platelet transfusions so hard to believe they were that low. Anywho... at the clinic Alex's doctor poked his head in the room to say hello and to see how Alex was feeling... He also wanted to talk to us about the Bone Marrow Transplant stuff. It appears that both teams (the oncologist team and the Bone Marrow team) are not in agreement as of yet as what to do with Alex. This situation is HIGHLY frustrating. We thought that everything was in order! Our Bone Marrow contact has already sent off for the HLA matching for the transplant. SO... being the person that I am... I called the Bone Marrow people when I got home and said that I wanted a meeting with BOTH teams in the same room so that we could ask our questions and we could get a really clear picture as to the risks and benefits of both protocols. Alex's doctor (Dr. Lemons) seems to think that the Bone Marrow's people estimates of successful chemotherapies are extremely pessimistic... and the Bone Marrow people seem to be sticking by their percentages. SO... what to do? We have a meeting with both Dr. Lemon's and the Bone Marrow team on Wednesday. I am writing down questions that I have this week. In the end, this decision really is Alex's to make. I don't think this makes her that happy, but I cannot make this decision for her. It's going to be the hardest one she has made for sure. Here's the thing... If she goes the chemotherapy route and she relapses again, she COULD (and possibly could not) have a BMT down the road... this is where they are in disagreement as to being possible to have a BMT after a second relapse. BUT... here is the big BUT... if she went the BMT route, and she rejected the BMT or for some reason she was having troubles, the only thing to do is have another BMT. The benefits to a successful BMT would be amazing. But... the risks and side effects of a BMT are very very broad, very common and at times can be fatal. All this can be said for chemotherapy too, though. We all remember Alex's massive stroke in November in 2007. So, you just don't know...

Well, even with all this said, it will be nice to meet with both teams and get a better feel for the situation. Alex's doctor is the head over the entire Oncology department at Primary Children's. We trust him. And don't get me wrong, he's not saying that Alex shouldn't get a BMT, he is just saying that it MAY not be the only way to go... and he wants her to be totally aware of all the risks that are involved. That is one part of all this that I am TOTALLY aware of. In fact, I know all too well the problems with a BMT. I guess this is what makes me a person that hates gambling. There can be a big payoff, but what are the odds?

SO... on Wednesday we have a really big day. First Alex has an appointment with the clinic for just a check up and then also for a Bone Marrow biopsy. No chemo will be administered. The doctor wants to check how well Alex is responding to everything before he proceeds with the next block of therapy. After the biopsy we go to this meeting with both the oncology team and the bone marrow team. It should be interesting. But it will be a long day for Alex.

Also this week... the home health nurse came in on Thursday for another blood draw (this will happen every Monday and Thursday that we are home) and her counts came back excellent. Her ANC is 3,400 (which is a NICE fat ANC), her red count is stable at 31, and her platelets at 43... which is still low but now climbing on their own. The next block of treatment cannot begin until they are in the 140/175 range. I don't think this will take that long. The next course is set to begin on the 28th of October, but the doctor wants the results of the bone marrow biopsy first. So, we wait. Something we are really good at. :D

I will update after our appointment on Wednesday with all the information that we received. Thanks for tuning in :o)

I can't tell you how grateful we are for all the cards and gifts! I can't even write "thank you" notes out quick enough. BUT, I am working on it! Thanks to the dentist that I haven't even met that sent me a WHOLE case of Colgate soft toothbrushes. Really... THANK YOU! And, to my very good friend Kristy... you are truly one of the most generous people I have ever met. I do have a great group of friends!

Here is what Alex and I have been doing at home this week (several weeks really). This is an 8000 piece puzzle that is a history of the world. It's an Italian artist and the captions are SO adorable! You just have to see it to believe it.

Here the sweetest man sits with us while Alex is getting platelets. This is the infusion room at the cancer clinic. There are about 12 lazy boy type chairs that the kids sit in. There are TVs and snacks and toys of course. The staff here are amazing!

October 16, 2010 - Single White Blood Cell

What do you know... A single white blood cell has decided to show his cute little self today! Wooohoooo! Alex's bone marrow has officially started working! And the exciting news is...............

Drum roll please..........

Alex gets to go home today!!!! YAY! She has one little lonely white blood cell but the doctor sees how well she is doing and has decided to release us from this prison. BUT... she has to have the home health nurse come every monday and every thursday until the next block starts to check her blood counts. We also will go home on IV antibiotics until her blood counts reach a safe number too. As long as she stays fever free the only time she'll have to come back up to the hospital is if she needs a transfusion. BUT... the good news is is that her red blood cell count actually went up a tiny little bit today. They are going to transfuse some platelets before we go home today so she'll have a few more of those. This will be the 12th blood product since the 30th of September.

It is amazing how fast Alex can start packing up her stuff. Hilarious really. Dan has taken a bunch of stuff home and is off to work... I am hanging out waiting on this long, drawn out process of discharge. Of course Alex has to get the platelets first but those are fairly quick. We are taking bets on when we'll really go home :) I am guessing 3pm and Alex is guessing 4pm.

Oooooh the platelets have arrived! YES! Now to work on all the fun stuff they have to deliver to the house today.

I will update more later! Wooohooo!

October 14th - Two Bags Full

Good morning everyone!

We have been here two weeks today! Uggg!

Today Alex is feeling pretty good and is up and about joking around. So that is always great. We have already gotten blood counts today. I would not say they are good... BUT they are leveling out so to speak. Meaning that they don't seem to be losing a lot of ground compared to yesterday. Her red blood cells went down like I thought they would, but not much. I think this is good news. She still has no ANC white cells. SO... she is going to get 2 bags of red blood cells today... making this the 11th bag of blood products that she has been given since getting here this go-around. Amazing! And THANK GOD for donors! This will take about 4 hours of infusing and hours to get it going. It will be an all day process to get'r done.

The photos included today are from last night's activities. We were surfing the pods and they have them all decorated so cute for halloween (kid's hospital and all). They have all these adorable spiders made out of pipe-cleaners. Adorable as spiders get I tell you! :o) Any who Dan decides to take to a life of crime and steal a few.... Too bad I don't have a video to post. It was hilarious. And I am just SURE no one knew who took them with all the laughing that was going on. Now Alex's room has a few more decorations. Maybe I will make a cute "WANTED" poster and hang it outside the room. (I am good at WANTED posters by the way.)

This is the cute little spider... these have magnets and look so cute by the bathroom door. Especially funny when one scares someone :o)

Doesn't Alex look pleased with the stolen property?

Here is the big spider... this one had to be smuggled under a sweatshirt. He's attached to the I.V. pole now and seems to really like it there. He does look happy don't you think? I think we saved him really...

October 13th, otherwise known as Day 21

Good morning everyone and welcome to the new blog! I will try and get all the archived posts moved over soon so that anyone who is just joining will be able to catch up on all the excitement we have had over the last 3 years.

So, for today, things are going pretty well. Alex has just woken up and I am getting ready to help her shower. The nurse today is a bit of a dingbat. It's frustrating when they talk to you like this is your first day on the cancer job. Like today for example the nurse says "Well, before you shower I like to put these special strips around her dressing so they don't get wet." (said in this little sing-song voice) And I looked at her and said "We've been doing showers every day for 2 months and we have a system. I don't want anything else attached to her. We sort of know what we are doing." (I kept the sing-song voice out of my reply) This nurse is new. It's amazing how many there are! How could it be that we can keep getting new nurses after all this time? Where do they come from? This one seems to have worked in a preschool previously. I can tell it's going to be a long day. Alex is already annoyed with her.

Alex is going to get some more platelets today. This will be her 9th transfusion of some type of blood product since she arrived on the 2nd of October. Platelets are easy and they are fast to transfuse, so they aren't too much of a problem. All her counts today are horrible. Her red blood cells have gone down for yesterday also... so wouldn't be surprised if red blood cells are on the menu for tomorrow. Her ANC cells are still at zero. This will be the 12th day of Neupogen shots and so far... nothing.

I plan to call the bone marrow people today and see if they have any information for me. I feel like everything is coming up and I know nothing. It's a frustrating feeling. I will update as soon as I have some information.

Here are a few photos from the last couple of days

October 12th - Day 20

Hey everyone. I know that some of you are wondering where the updates are, so I'll get started :o)

First of all... Dan and I had a GREAT 4 day break. I would like to thank EVERYONE that made that possible. It's hard at times being married to a pilot. The only times that we truly get one on one time together is when we go away. Which is why we try to do it as often as possible. SO... first of all I would like to thank Alex's dad and step mom for being here and allowing us the opportunity to get away. Second... There are several people at Dan's work that really stepped up to the plate to take some shifts and do some things that made it possible for him to get away. Also... would like to thank my friend Tabitha for house-sitting with our crazy dogs. We could not have gone without you Tabitha, so thank you!

SO, while we were away Alex did really great. She is still in the hospital of course, but things went really smoothly.

Alex has received 8 different blood product transfusions in the last 13 days! That is unbelievable and not showing a whole lot of improvement yet either. Her ANC portion of her white count is still zero. Her platelets seem to decrease every single day except for the days they give her more. Her red cells actually gained a little ground today and this is the first day for that. So... maybe that's a sign??

Another thing that has happened is Alex had another MRI. Her eyes haven't been improving so the neurology department came in and decided they wanted to have a look at an enhancement in the cranial nerve. The MRI results were really great. Nothing there of concern. The oncologist didn't think this was necessary in the first place, but agreed that it wouldn't hurt. Her doctor started her on some different eye drops with some steroids in them. Her eyes seem to be a bit better today already. This is great news!

Also, we learned that the next block of treatment (another 35 days set to begin sometime around the 28th of October) will be done outpatient! WoooHooo! That is IF Alex responds well and doesn't get any infections, fevers, etc... We also learned that we can go home as soon as Alex has a rise with the ANC portion of her white cells and they continue to climb for 2 consecutive days. So far we are calling her bone marrow defunct. It's not producing crap :( BUT, she is feeling well... and that is about all we can ask for while stuck in this place for so long.

Thank you to everyone that has sent cards and gifts to Alex. There are many of you out there that are SO thoughtful!

Thank you to Pam Kettell for dropping off some great and MUCH needed supplies at my mom's house. Alex would love to see you some time if you aren't busy. She just loves visits from her teachers. And she says she LOVES your idea for 2011! I can't tell you how happy I am that you two were able to go together this past summer. What a great thing for you both to do. She loved her time with you!

That is about all the information that I have to report on. Which is great news :o)

We need some good blood vibes coming in so we can blow this joint!

October 6th

Good morning! Things here pretty good. Alex's C-Diff tests came back negative. YAY! So, no one has to dress up like a hazmat team to come in any longer.

Alex's blood counts are continuing to drop. Of course the white cells have nowhere to go... they have been at zero for 6 days now. The red blood cells are low today and the platelets are continuing to go down as well.... I am sure they will transfuse again in a day or so. For all those who give blood on a regular basis... GOOD JOB!!! For those that don't... Please try to do so. It's soooo easy to do and we just heard that the blood banks are low (not dangerously so) and it's such an important thing to have blood in the blood banks. PLEASE GIVE BLOOD!!!! It could be something that saves your own life. I never gave blood a second thought before Alex was diagnosed with this awful disease and now... wow... She has gotten so much blood from people just to keep her alive. It's just an incredible gift to someone... and such an easy thing to give.

We had the staff Psychologist stop by yesterday. He is the nicest guy. Alex really likes him. She did NOT back in the beginning. After her stroke she didn't want to talk to ANYONE about any feelings... or how she was coping with things. He basically stops in just to visit. Him and Alex had a long talk about college... and what his dissertation was on... and then got into a bit of philosophy. They were having a good time just chatting... and I am sure she is a totally different patient than he is used to up here at the Children's hospital. He was going to try and talk to the night Dr. about getting us out of the room (with Alex wearing a mask) and letting her walk over to Starbucks with us. It's SUPER dead here at night and he thinks it would go along way for her state of mind. I agree but then some times I think we should put her in a sterile bubble until this is all over. I am just sure my way doesn't make much sense... or is very reasonable... but...

Other than that there is not much that is new. Which is a good thing really. We just sit here and wait for blood counts to climb. Alex is on her 4th day of neupogen shots. I wonder how long this stuff takes to start working?? And if the cells would grow at all without it? So far things are still dropping so? Amazing how all of these protocols are put together AND how different they are from case to case. Some people have different kinds of leukemia that they treat ONLY with oral medications and move right into a Bone Marrow transplant. Why is Alex in a group where they have to pretty much kill her off before they do it? It's all so confusing but interesting at the same time.

Alex's dad is coming into town tonight to stay with Alex for the next 4 days. Dan and I are going to get away and have a little break while her dad is here. I can't even tell you how much we are looking forward to having a bit of a break. She is SOOOOOO looking forward to his visit. It's such a hard time for her to have her dad so far away through all of this. I am sure it's hard for him as well. I am also sure Alex is going to love having a different face to look at for a few days! :D

I hope everyone has a great day. I will update more in a few days unless there is something to report on. Hopefully there will be nothing too exciting happen :o)

October 4th

Day 12

It's Monday morning in Utah and the weather looks like it's finally changed to fall. As much as I love this season, so much of it is tied to this illness for me that's it's hard to enjoy it. October of 2007 is when Alex was first diagnosed with leukemia (ALL). It will forever be the most devastating time for us. Now it's October again and we are faced with our biggest battle yet.

I have been scouring the internet for days looking for resources that can help us all through this. Manly looking for others that have been through this that I can talk to. I feel mentally prepared for most things, but would love to speak to some "real" people to find information for things that I haven't thought of... things that can help us simplify our lives for the months ahead.

Alex will be going through a Allogeneic transplant with an unrelated donor. I have been doing a lot of research on the facilities where this is performed and their ratings. Mostly the important factor is that they are FACT certified. After MUCH research I have found out that this facility is in fact, FACT... So, that is good news. It appears that there are many tests that will take place before the transplant... Echocardiograms, EKG, Pulmonary function tests, CT and MRI scans, and more bone marrow biopsies. She will also undergo total body irradiation.

If anyone knows of any up-to-date Bone Marrow Transplant blogs, please forward them to me. I would greatly appreciate it. I'm having a hard time finding anything current.

At this point I am not sure if they have made the decision to do the the bone marrow or peripheral stem cell transplantation. They are both pretty similar in the way they are performed. I am really hoping to know more soon.

From where we sit right now, it appears we have at least 8 weeks before we can begin.

Today Alex is doing pretty well. She is having some side effects from this last round of chemotherapy. Her hands look extremely sunburned and they are sore. She also is having a hard time opening her eyes all the way. They assure us that this is normal, but haven't commented on how long they think it will last. We are also waiting on the C-Diff test to come back. I really don't think they will find anything there but... who knows? She is unhooked from the IV pole for a few precious hours and is enjoying that :) I have not received her paperwork with her blood counts today, but she did have to have another platelet transfusion yesterday. I hope those little guys are looking up today.

I am also thinking of moving this blog to a different place. This website (which is totally awesome by the way) makes it hard to find archived posts... and also hard to post photos and such. If anyone has a blogging site that is easy to make and update, I would sure love some recommendations. Please email me :) My email address is always on the right side of this page. Email me any time!

Thanks for tuning in everyone! I truly appreciate it!

October 2nd

Day 10

Good morning everyone. Well, it's been a pretty uneventful morning so far. Alex finished up her last dose of ARC (the chemo) about 10am. She tolerated this round of treatment very well. Especially when considering that she has received SO much poison over the last few days. I think because of the violently ill night she had last week she decided to forgo food until the treatment is over. I hope she feels like eating something today.

We are officially stuck in the hospital room until her counts recover. Her white blood cell count has officially hit zero and she has no infection fighters onboard at all. Her platelets are still pretty low so I am not sure, but I think she will get more of these soon. I can't see those numbers climbing at all.

Also it appears they are worried about some issues going on in the bathroom and are now going to test for C-Diff. Clostridium difficile, often called C. difficile or "C. diff," is a bacterium that can cause symptoms ranging from diarrhea to life-threatening inflammation of the colon. Illness from C. difficile most commonly affects older adults in hospitals or in long term care facilities and typically occurs after use of antibiotic medications. This is another reason we are stuck in the room. This is contagious and even the doctors wear gloves and gowns to come in Alex's room until these tests come back. Which I have been told takes a couple of days.

Other than that we are just hanging out. I do believe the neupogen shots start tomorrow. I will update on just what that means when I know.

Thanks so much for all your thoughts and prayers. We do appreciate them!

October 1st - Day 9

Day 9

Good morning everyone!

Well, here we are again at the hospital. We checked in yesterday and were settled right into a room. It was a nice experience compared to last week when we moved around. We brought decorations to make the room as comfortable as possible for Alex for what will be her home for the next 3 weeks. It seems like such a long time.

Most of the hours leading up to the first dose of chemotherapy are about getting her correct weight and height. They check all her vitals and hook her up to a bolus of fluids (meaning they pump her full of fluids at a very fast rate). They want her kidneys and everything to start working quickly. They also draw blood labs out of both of her lumens that are coming out of her chest. They check these for blood counts, infections, and all types of things before they proceed with the chemotherapy.

Alex's blood counts yesterday weren't that great. Her ANC was only 200 (basically nothing). We left on Monday night with an ANC of 2000, so that is how much they have dropped in 3 days. Her red blood cells and her platelets were also low. I am pretty sure they will be doing a transfusion today on both of those. It's really a shame they cannot transfuse white blood cells :o(

Alex is getting 4350 mg of Cytarabine 4 times over the next two days. She will finish the 4th dose tomorrow morning about 9am. 24 hours after the last dose of chemotherapy they will begin Neupogen shots. This drug is used to promote white cell growth. It appears that they will be given at least once daily and will continue until her ANC reaches 1500 for 2 consecutive days. These shots can cause extreme bone pain as the bone marrow works to promote new cell growth. After reading about all of this today it appears that this is a side effect that not everyone experiences. So, let's hope this does not bother Alex. She has enough she is dealing with.

We are in room 4401 at Primary Children's Hospital. This is the dreaded room we had after Alex had her stroke almost 3 years ago. We are hoping to kick the bad voodo once and for all :o)

I am a little concerned about infections and all that. Alex got one bug last week with great blood counts and almost no interaction with people. What's going to happen during this 3 weeks while her counts are pretty much nothing? Uggg! Please send good blood vibes. We sure need them.

Thanks so much for taking the time to read about Alex. I know that I sure appreciate the support that I have here.

By the way... the cards are starting to come in and they really add to making this room personal. Thank you to everyone that are participating. Alex looks forward to the cards that arrive each day. Please keep them coming. Send them to:

Alex Thomas
1727 E Ramona Ave
Salt Lake City, UT 84108