February 24, 2008 - That's a wrap!

Happy weekend everyone!

Sorry for the late check in. Thursday was a long day, and then we had good friends come in from Kansas and Alex's dad from Florida on Friday, so things have been a little crazy all weekend. First of all, it was soooo good to see our friends. We missed our cruise with them in December, so they decided to come out this way and give us all hugs and hang with us for a few days. We had such a good visit! Thank you for coming Debbie and Rich!!!

Alex's treatment on Thursday was able to go forward! It was a great thing. Even though you dread the sick days that are ahead, you know that if treatment gets postponed, you are just further away from maintenance. So... her white counts were high enough to continue. She had IV Methotrexate, and Vincristine. The clinic visit was actually quite quick. We had to be at the hospital at 7:30am for her EEG (pictures updated). The test went well, but we don't know anything... of course. I will have to find out from the neurologist this week how things look.

After the EEG we went up to clinic and sat and waited for the doctor and the blood test to come back. After the blood counts were checked out, we had to wait for the chemo to be made up. It is specially made for every patient, so it takes awhile. They make it up based on your weight at that time... and the increase of chemo is also based on what your blood counts read that day as well.

Alex has had a great weekend with her dad and step-mom. Yae!!! Everything has gone really well. I am sure she is going to be very sad to see them go today.

Keep up the good blood cell vibes everyone! Send some more red ones... we were really low again. Not enough for a transfusion on Thursday, but they were way down from last week. And for ONCE since all this started, we have NO clinic visit this week (dare I say that?). Yippee!!! Our next visit is next Monday, and that should be "day 21" of our 51 day program.

Thank you everyone for everything! I hope there isn't much exciting to report on before next Monday :o)

February 19, 2008 - A walk outside!

Hi everyone!

I just thought I would write a quick update and let you know that things are going pretty good here. We were able to get Alex out yesterday for a walk... she made it about half way up the street and then we turned around. It was awesome to get her out walking. We still have to hold on to her, but her endurance is getting a whole lot better. Yae! It probably means she has plenty of red blood cells right now. Today Alex actually came into the kitchen and helped me a little with dinner. We have a galley type set-up here, so she has something to hold on to and go from one side to the other very easily. It was great to have her in the kitchen with me.

Thursday Alex is having a few things done. Hopefully her counts will be good enough for her treatment, but she also has an EEG planned. This is where they hook up many many colored wires to your head and you lay there for a LONG time and they flash strobe lights, and other lights... very strange to watch. The Neurologist wants to have another one done to check to see if she is still at risk for seizures. Alex suffered two of these after her stroke. She doesn't think she is at risk anymore, but she wants the test done so we can (hopefully) take her off the twice a day seizure medication. The first EEG she had done was just after the stroke and it showed a very sleepy brain... SO, it will be very interesting to see how this one turns out. I do know that this test will be much easier because they won't have to weave through all her hair. She has to be sleep deprived for the test and they only want her to sleep from the hours of midnight and 4am the night before. SO... tomorrow we will be up partying! I will try and remember to take a picture of this test.

Also... I have had many of you write to me and ask if there was anything they could send Alex, and I have been at a loss as to what to tell people. I thought of something over the weekend that she really likes and seems to be quite helpful. We learned in clinic that the scent of peppermint really helps with nausea, so we put 100% peppermint essance oil on cotton balls and put them on her humidifier in her room. Well, she could really use more peppermint oil, we go through a lot of it. You can find it at most health food stores. Anyway... that is something she really enjoys and it helps her.

I hope everyone is doing well! Please keep up the good blood cell vibes. We need many for Thursday! I will write then and update pictures and let you all know if the treatments have continued.

Thank you everyone for everything!!!

February 13, 2008 - YAY! Day one!

Hi everyone! We finally made it to "day one" of Standard Interim. This will prove to be a very confusing, long process. From what we were told yesterday, every single treatment in this course, is count dependent. Dang! There is a treatment every 10 days, but if her ANC is not over 750, then they re-draw blood in 4 days and go from there.

This is how our week started out... Monday I picked Alex up from her GREAT weekend with her dad. They had a fantastic time and everything went smoothly. Thank GOD! We had a MRI appointment later that day so we went into the clinic early so they could draw some blood to see if they could start her new phase on Tuesday. This was 3pm... They took the blood and we were downstairs ready for the MRI. Once she was inside the machine (dang, I forgot to take a picture of it!) I ran back upstairs to see if the blood results were back... It is now 5pm... The lab has lost her sample and Alex is in the MRI machine for 45 minutes, so we wait... Once she came out of the machine, the lab sent someone down to take some more blood and we all went back up to clinic to wait for the results. We were the only ones in there besides the nurse. We are quite close now. Anywho... by 6:45 we still did not have final results but the ANC was only looking to be 610... not enough to start treatment, but they wanted us to wait because the final tally can sometime produce a few more cells. BUT... of course in our world things didn't happen quickly or smoothly and they sent us home and wanted us to come back in the morning for another sample. At 7pm we headed home. Jeeze! At 7:30am they wanted us back in to give some more blood. Once we were in the examination room waiting for the doctor, we found out what the deal was the night before. When the doctor came in, he said that the lab didn't like the look of some of the cells and they wanted him to look at them. Turns out that everything was normal and good. I am glad that I didn't go home knowing this. Anywho... the night did us some good because she grew a couple more white cells through the night and she had 900. Enough to start.

Alex was first taken down to the RTU (Rapid Treatment Unit) and they sedated her and she had a spinal tap, where they administered chemo, and they also did a bone marrow biopsy to make sure everything is still in remission. We should find out about that on Friday. After she came out of recovery we went back upstairs to clinic, and she got two different doses of chemo. Vincristine and Methotrexate. This is the first time she has gotten Methotrexate through the IV. This type of chemo will be given every 10 days and they will gradually increase the dosage with each treatment. This is called the Capizzi method. We are lucky that we were randomized to this form of Methotrexate, because if she would have gotten the High Dose Methotrexate, she would have had to have every treatment "in patient". Not fun! Anyway... everything went smoothly and we were home by 1pm. This was a record time visit. Yae!!!

So, next Thursday she will go in again... if her counts are good. SO, please send bunches of good blood cell vibes. We need a lot!!!

Thanks for all the messages, the thoughts and prayers. They are very much appreciated.

February 7, 2008

THURSDAY, FEBRUARY 7, 2008 6:36 PM, MST

... Just thought I would check in really quick and say that there is nothing new. The MRI machine is still broken so we were canceled again. It is rescheduled now for Monday but the part is still not in and it should be on Monday. Yeah... right :) I am hoping so and then when we go to the doctor on Tuesday, he can read the results to us. I am SURE it won't happen this way in my perfect world... so...

Alex leaves tomorrow until Monday with her dad. She will be up in Ogden at her grandfathers house. She has been a little anxious about going there, since that is where the stroke happened. But I think as time goes by, she gets a little more certain that things are getting better. I really hope they have a nice visit together. So far, she hasn't had a great one with her dad since all this has happened. Let's all send great vibes for a GREAT weekend for Alex.

Dan's sister, Sandy and his brother in law, Duane are coming into town tomorrow as well. I SOOOO hope they get here before Dave picks up Alex. I know they would like to see her. I am really excited for their visit. They haven't been here together to visit us in 7 years... and neither of them have met any of my side of the family, so I am really looking forward to them being here.

I will check in Monday or Tuesday and see how all of you do on your vibe sending skills :o)

Have a great weekend everyone!!!!

February 5, 2008 - Alex's first outing in 3 months!

Hello all...

Well, what I thought would be "day one" of Standard Interim was not. So sad... her counts were not good enough to start the new course, so they sent us home. At least Alex was not anemic this week. Yae!!! Her platelets were all in line, but the good white blood cells, the ANC, was almost 0 again. I was a little shocked. It was 1900 last week, up from 300 the week before, so that was weird. And the MRI machine broke so we didn't have that done yesterday and we do it tomorrow. SO... not much to report on today as far as clinic goes. We did have some fun waiting on the doctor again. If you want to pull up the pictures, you can see how Dan spends his time while we wait. Never a dull moment with these two. He actually blew the glove up while it was on his head. He really is quite talented.

One VERY exciting thing that has happened since we last talked... is that on Sunday we took Alex to The Cheesecake Factory!!! She couldn't wait to go there. It is new here and she has been very anxious to go. We have not been to dinner as a family since October! It was a great outting. She felt good... she has been doing good with food... and at the time I thought her counts were good. Who knew that they probably weren't?? Hopefully it proves to have been ok. But like Alex said today... she doesn't want to be a total hermit, so we just have to be as careful as we can.

No chemo for Alex this week. That will be a nice break for her, although she was eager to get on with it too. But, one good thing is that her dad is flying in from Florida this weekend, and she should be feeling really well for his visit. They won't be able to go anywhere, but they should have a good visit.

Check out the new pictures... and I will write again tomorrow with MRI pictures and more info.

Please don't forget to send the good white blood cell vibes. I think I lost a few of you this week??? hee hee Just teasing... you are all doing great.

February 5, 2008 - Denied!

Hello all...

Well, what I thought would be "day one" of Standard Interim was not. So sad... her counts were not good enough to start the new course, so they sent us home. At least Alex was not anemic this week. Yae!!! Her platelets were all in line, but the good white blood cells, the ANC, was almost 0 again. I was a little shocked. It was 1900 last week, up from 300 the week before, so that was weird. And the MRI machine broke so we didn't have that done yesterday and we do it tomorrow. SO... not much to report on today as far as clinic goes. We did have some fun waiting on the doctor again. If you want to pull up the pictures, you can see how Dan spends his time while we wait. Never a dull moment with these two. He actually blew the glove up while it was on his head. He really is quite talented.

One VERY exciting thing that has happened since we last talked... is that on Sunday we took Alex to The Cheesecake Factory!!! She couldn't wait to go there. It is new here and she has been very anxious to go. We have not been to dinner as a family since October! It was a great outting. She felt good... she has been doing good with food... and at the time I thought her counts were good. Who knew that they probably weren't?? Hopefully it proves to have been ok. But like Alex said today... she doesn't want to be a total hermit, so we just have to be as careful as we can.

No chemo for Alex this week. That will be a nice break for her, although she was eager to get on with it too. But, one good thing is that her dad is flying in from Florida this weekend, and she should be feeling really well for his visit. They won't be able to go anywhere, but they should have a good visit.

Check out the new pictures... and I will write again tomorrow with MRI pictures and more info.

Please don't forget to send the good white blood cell vibes. I think I lost a few of you this week??? hee hee Just teasing... you are all doing great.