September 3, 2010

Hi everyone...

It was a LONG day yesterday. Poor Alex had to go through many things before we had a 3 hour consult with the Bone Marrow director.

We started off in the clinic where Alex got her SUPER big syringe of Vincristine. We did get to talk with her regular doctor today, Dr. Lemons. He is always so informative and straightforward with everything. He is the director of the Oncology department up at Primary's and we are so lucky to have him as our primary physician. (some kids aren't so lucky with their docs). Anywho... he is making a call to someone that's the head of the board with our insurance company. Apparently he knows them (another great thing with having the head of oncology on your case). He appears to have a low tolerance for bullshit as well.

So... the examination went well... the first part of chemo went well... and then they sent us down to the RTU for Alex to have her lumbar puncture and her bone marrow biopsy. This bone marrow biopsy will tell a lot. They really would like to see that the chemo she has been getting has almost cleared out the leukemia cells. I know it's been working because her labs this week show her white blood cell count as horrible. Last week her white cell count was at 4900 (which is great... and with help of LOTS of steroids) and this week she only has 200 onboard (that is super bad). Her doctor did not feel like he needed to admit her, but he did send us home with more antibiotics for Alex to start taking just in case. She is now on 4 different precautionary antibiotics. The risk of infection is great... and dangerous in her condition. I am really not sure why it's more of a danger this time around, but it is.

After her visit to the RTU we had to go back upstairs to the oncology clinic to meet with the bone marrow team. This was what I had been dreading all day. I filled out a TON of paperwork on her history, family history, and current information. Then the transplant team dropped off the perfunctory booklets and paperwork. All of which to blow your mind but with cute little cartoon people on the front. Once all the paperwork was done the director of the Bone Marrow department came in to talk with us. I immediately liked him. (not always the case with me anymore) He was very informative and did not talk with Alex like the normal age group he is used to addressing up at the children's hospital. He talked to us about her medical history since diagnosis and explained why he thought that the bone marrow transplant (BMT) was his first choice of treatment. There were a few reasons why...

#1 - One of the big drugs used to treat leukemia is a peg asparaginase shot. This is what they have linked to Alex's stroke that was completely debilitating back in the beginning. That chemical has been taken off the table since the stroke. No one knows if this is one of the reasons why she has relapsed, but it could be. It is a key player to treating leukemia. So, without being able to use it again, he just feels that is one of the reasons why BMT would be more successful where chemotherapy alone would fail again.

#2 The most successful BMTs are done with cancer in full remission. If Alex were to choose to treat this relapse with chemotherapy alone (which she can) and she were to have another relapse, the chances of putting the cancer in remission for a third time would be very unlikely. It would also make having a BMT less successful or even possible. The body can only handle so much chemotherapy. Your body either becomes immune to the chemicals, or organs start getting so damaged by the effects that they shut down.

SO... after meeting with everyone, it's more clear what we need to do if Alex is going to have a chance at surviving this relapse. We need to move on to the BMT course of treatment. It's SO radical... it's completely foreign to me... and it's so incredibly scary. BUT... it sounds like it's about the only thing that could save Alex's life. It's an easy decision based on everything we heard yesterday. It's just not an easy course of treatment.

Here is what will happen:

Alex will continue on with the 3 blocks of chemotherapy treatment. Each block is 35 days or 5 weeks. She is day 16 into Block 1. These 3 blocks of treatment are designed to put the cancer into total remission to have the BMT successful. It also gives the BMT team time to find her perfect match. There are many factors to doing this... once they find the matches they have to coordinate with each and every one (they pick 5 or so) and they have to submit more blood test for local testing. After local matching is approved, they get with the best matches and schedule the bone marrow donation. This all takes time.

After block 3 is complete she will move into the BMT phase... this is a 5 to 6 week inpatient hospital stay in total isolation. I am not sure when everything takes place or if her counts recover at all for this?

There is WAY more information about the bone marrow grafting and when all that takes place, but I won't tell you about it here until I know more.

Here is the good news:

Alex has 3,008 PERFECT matches. She has plenty of 100% matches to choose from.

Here is the scary news:

This chemotherapy that she is doing now MUST put the cancer into remission for this BMT to take place.

The complications of a successful BMT are vast and can be long term.

Here is the weird news:

The donor may not have the same blood type as Alex. Once the BMT takes place her DNA will still be her, but her bone marrow and blood will be someone else. The director told her that if she wanted to turn to a life of crime after, it could be easier. She is weighing her choices now... College professor/International art thief. It's a hard choice.

All of this information that we received yesterday, although encouraging, was devastating to Alex. We are all trying to figure out how to cope with what lies ahead.

I will update the blog more this week when we find out her preliminary bone marrow results from yesterday's appointment.

For the locals (and non locals) wanting to visit:

This is EXTREMELY dangerous stuff we are working with here. If you have been exposed, or possibly exposed to any infection of any kind, PLEASE stay home! Even something as simple as strep throat for someone else is highly dangerous to Alex... even deadly. This is especially important to all those that have young children that are still in school or in daycare. There is just no way to tell if they have been exposed to anything... and then have exposed you (the parent). I know there are many that want to visit Alex, but everyone really needs to check themselves... a simple cold will send Alex to the hospital for a prolonged stay, and a set back to the BMT process... We really appreciate your thoughts and prayers. Please know that we would love to see everyone. It's just not possible with this treatment plan. And anyone who does come to our home for a visit (thought I would post this here so you aren't surprised) the first thing I will have you do is wash your hands. Also... make sure you are wearing CLEAN clothes! This is especially important for any of Alex's friends because they like to go down to Alex's room and sit on her bed. Everyone picks up many things on their clothing... please just be aware of where you have been, and how serious it is to Alex's life.

Thank you SOOOO much to everyone that has emailed me or sent text messages to me... or called. The support is just amazing and I appreciate each and every one of you!

August 26th

Hi all...

We are home from the hospital. Everything seemed to go well. It was soooo incredibly sad to see everyone up at the clinic. And they were especially sad to see us. We had many different nurses and doctors stopping in the room to ask us "what the hell!?"

We started out in the clinic with Alex getting Vincristine and labs done. After all the doctor visits they sent us down to RTU (Rapid treatment unit) for the lumbar puncture. They decided against the bone marrow biopsy today since the one they will do next week is the one that they really want the reading off of...

Alex did really well for all the treatments today. She is home resting now and will continue this course until next week where we find out what more is to be done. The bone marrow biopsy next week will hold a lot of answers for us. They want to see an abnormal cell decrease by almost all. I think they said the first reading was 80% abnormal cells and they want to see it at 5% at two weeks. SO... she needs some serious ass-kicking drugs in there fighting all the bad cells.

We are also doing an IV anti fungal medication twice a day.... Listen to how stupid this is... Our insurance will not pay for the anti fungal pill (well, they will but at $1300 a month our cost) but they will pay for the drug to be administered by I.V. This is where it's so frustrating that ALL healthcare insurance is is big business. No one really cares about the human element... or even the bottom line... it's just the "rules". Since the IV method is covered under "medical" it is paid... but the pill is covered under "prescription" so those benefits are different. AND they are both through the same company. The pill runs the insurance $2400 a month... the IV costs them $6400... the risk of infection is greater on the IV... the supplies involved are incredible... and the worst part is, is that Alex is hooked up to an IV pole at home for 5 hours a day! It would be different if this were just a 10 day antibiotic regimen but we have been informed that this drug will need to be given for a YEAR AND A HALF! At a cost to the insurance company at $74,800.00 a year! The pill, which Alex would only have to swallow twice a day will cost the same insurance company $30,568.00 a year. HELLO!!! Do these people NOT have an accounting department?

Well, that is my rant for the week :o) Actually, I have tons of things that I think are bullshit this week. Cancer topping the list... BUT, I am grateful for a few things... I could not ask for a better group of people that are here to support me!

I hope everyone has a great week... and I hope we have no complications and you don't hear from me until next Thursday. :o)

This is a photo of Alex with her new nook. My friend Kristy sent it to her. What an amazing gift. Thank you!

August 24th, 2010

Well... we are home. That is good news. They released Alex yesterday with a list of medications, twice daily I.V. anti biotics (that I get to administer at home) and an appointment to see her back in the chemo clinic on Thursday. She will receive a lumbar puncture weekly for the next 4 weeks. She will also receive IV chemo in the clinic each week. The process this time will be more aggressive than last time. The drugs are stronger and it is extremely important that they throw this relapse into complete remission in 36 days. We will have a bone marrow biopsy a week after this to determine how she is responding. We need some serious ass-kicking vibes sent out!

The bad news is, is that with this treatment plan, if she becomes neutropenic at all (low blood counts) she will have to be hospitalized until her counts recover. So, they are anticipating a lot more hospital time associated with this round of fun!

I will update more on Thursday with more information.

Thanks so much for tuning in!

August 23, 2010

So... here is what's happened so far. On Tuesday, August 17th Alex had a really bad headache so she called the clinic to see what to do. They told her maybe it would be best if she went to the E.R. We went up to the E.R. where they did a CT scan and a MRI. They showed 3 different masses in her brain. The neurosurgeon came in and checked out the films and said that he was 99% certain that this was a reoccurrence of the leukemia and that it was not operable. They admitted her back into the cancer floor for more testing in the morning. On Wednesday they took Alex down for a bone marrow biopsy and also a spinal tap to draw some fluid out of there as well. Both sites came back with leukemia cells. This time the diagnosis is a little more challenging. With the abnormal cells contained in the bone marrow and the spinal/brain fluid they have called this condition CNS disease. On Thursday they took her into surgery to insert another port for all the chemo and medications that she will be getting throughout this process. This port is different... it's called a Broviac. It's a double lumen line that will always be outside her body. She was not happy with this port decision. But, one thing we found out was that it has to be this type of port for a bone marrow transplant (BMT). From what we have heard so far, this is what will happen "ideally" after these next heavy courses of chemo are over with and she has recovered enough for the transplant. Also on Thursday she received another lumbar puncture to administer the first round of chemo to her brain and also was started on many different I.V. chemos.

To say that she is devastated about this news would be an understatement. She has to defer her scholarship again and this time by a whole year. Our social worker up at the hospital is putting together a letter for Dan to take to her school and try to get this done.

She has also had an Echocardiogram done to get some preliminary pictures of her heart. It sounds like these next rounds of chemos are hard on the heart and also cumulative. She also needed a lung x-ray so they had some films to go by as well...

As of last night she seems to be coming out of the fog of ALL the anesthesia she has been getting since Wednesday.

I want to thank SO many people that have already called and/or emailed. I also wanted to say here to remind everyone that Alex is not allowed any flowers (although we appreciate the thought so very much!).

The best thing anyone can do in this situation is go to www.bethematch.org and register to become a Bone Marrow Donor. Alex has no full siblings and no matches within her immediate family. I am only a half match (which is obviously no good) and so is her dad. The more donors the better! We have met with the transplant team briefly and they say the younger the better, but I am not sure what they meant by that. I will get more information from them I am sure.

I will try to keep this blog as updated as possible. Thank you for caring and wanting to keep up with Alex's progress.

August 21, 2010

I just wanted to write a quick note to say that Alex is back in the hospital and the cancer has returned. It's a bit more complicated this time around. I will resume the blog and try to keep it up to date for those following Alex's progress.

I am sorry to see you all back here :(

March 14, 2010 - last clinic appointment

Hi everyone! I just wanted to update the blog with some photos... past and present... and to finish things up.

Alex has had her last round of chemo and is finally done with all her medication. We celebrated all this with a trip to Las Vegas last week. Alex has been wanting to see a Cirque de Soleil show so we figured Las Vegas would be the easiest place to do that. I can't believe the people that came to Las Vegas to celebrate this with us. I have truly unique people in my life. My best friend from Kansas and her husband flew in... Debbie and Richard Folkers. These are two people who flew out to Utah after Alex was diagnosed JUST to give me a hug! AMAZING friends, these two. We also had Dan's son, Mick and his girlfriend, Amanda, with us. My cousins April and Rian were there from California. VERY nice to see them! Rian's father, Bill Medlin and his wife Sue from California were there also. I am SURE you all know Bill and Sue from their constant support here on the Caringbridge site. These two people sent Alex gifts and cards constantly! For the celebration dinner we also had one of Alex's favorite teachers show up, Cynthia Smith. She drove all the way to Vegas for dinner! Amazing woman! This teacher of Alex's would drive down to Salt Lake (where we live) in the beginning and would watch Alex while Dan and I went to a movie... or dinner. She is a great friend! Dan also had his best friend show up for dinner... Cory Chamberlain is a pilot that has flown with Dan for years! He drove all the way from Salt Lake City for this dinner also.

What an amazing time we all had. I wish I could have had more time to spend with everyone individually but there just wasn't much time with Alex and I going to two Cirque de Soleil shows. It was great to see everyone though! Both Alex and I appreciate your support!

What's next???

Well... Alex has two things that have to be done soon. The first is another Echocardiogram. They took one of these the day after she was diagnosed. They wanted a really good look at her heart... to be able to compare it with the one they need to do this month. All of these drugs are so hard on a body. They want to make sure everything looks good and little if no damage has been done to her heart. We really need some good vibes for this please!

She also needs to schedule a surgery to remove the port that they put into her chest in the very beginning. They no longer need to access that for chemotherapy. She still has blood draws every month, but they do not need to use this. This will be a great thing for her to have removed!

Other than these two things, she only has to go into the clinic once a month for blood draws and physicals. YAY!

Alex has also started her second year of college. She is extremely busy but loving it! It's so nice to see her back in her element. She is a history major and loving the college life. She still lives here with us and probably will for awhile longer.

I cannot tell all of you how much it means to me to have all these messages here for Alex and I. I can't believe there have been over 6,000 people that have come to this page to read about our journey through all of this. I have printed out this journal today and have read through from the beginning. I cannot believe Alex has had to go through all this! I cannot believe I have done all this! It's truly a testiment in not knowing what you are capable of until the situation arrives. I wish I would have known about CaringBridge in the very beginning. I wish this journal was complete. This journal was started after the REALLY bad stuff... I wish I had a daily account of my time through November and December. Those were very dark days for me. The only thing that got me through that time was my AMAZING husband, my incredible mother, and a few select friends and family. I have no idea what Alex and I would do/would have done without my husband. I have never seen anyone care for a child that isn't their own, like he cares for Alex. He's held her... he's carried her... he slept many a night in the hospital so I could come home and sleep in my own bed with my dogs... have a cup of coffee in my own kitchen... This man has always said that he wanted to do something with a higher purpose. I think he has covered that. He was also our advocate. In the beginning all I was worried about was Alex. I didn't know the right questions to ask. The protocal of treatment is literally as big as a ream of paper... they stacked notebook after nookbook in my arms the night we were admitted into the hospital. I had NO idea what we were facing. Dan took ALL of this home and read it. He highlighted everything he had a question on. He asked anything that he didn't know. He questioned things I didn't think of. If there really is a heaven... I think he has earned a front row seat. I really do.

Also, I could not have made it through this without my mother. Any of you who know her understands this. She is the most amazing woman that I will ever know. She came whenever I needed her without question... without worry for her job... or herself. She just showed up. I know that she feels so incredibly sad that I have had to experience all of this. As a mother, the last thing you want is for your children to experience this type of pain... this type of worry... BUT... I want her to know how very much she means to me and that all of this would not have been possible without all her help. She is the best mother anyone could hope for!

I have a few others that have been crucial as friends and supporters. I consider them the best people in the world. They know who they are and they know how much I love them! I hope we only talk of happy and healthy things from now on!

And last but not least.... I want to thank all of you that have been a part of this ongoing blog. I have no idea what it would have been like without all of you. I read your messages daily. You will never know what effect you have had on all of this. I wish I could thank each and every one of you in person! I am so grateful to all of you. Thank you all for being a part of our lives!

And lastly from me... there is always the monster in the closet when it comes to leukemia, Alex and how well she is doing. The success rate for leukemia in her age group is good. BUT... as a mother, it's not what I would hope for. With that said... I hope that she continues the way things are... that she only has improvements ahead of her... and that she gets all out of life that she wants. She SO deserves it. And I hope that you never have to read anything else about leukemia and Alex.

March 4th-7h, 2010 - Celebration in Vegas!

Here are some photos from our celebration in Las Vegas. We had a great turn out...

One of my very best friends in the whole world.. Deb

Alex and Rich (our very good friend)

Alex and her grandma

Debbie, Mick, Amanda, Alex and Rich

Debbie and Rich

Cynthia and Alex

Cory and Alex

Everyone at breakfast in Las Vegas

My cousins April and Rian (with me)

Mick and Amanda