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 :(