January 27, 2008

Hi everyone!

I thought I would write a weekend update. It has been a pretty decent week since Tuesday. I really think Alex is starting to feel better, all the way around. If you could see the changes in her since a month ago, you would be amazed. Unfortunately, her energy level and her mobility isn't getting much better... in fact, I think she has lost some endurance. I am a little concerned about it, but after calling the oncologist on Friday, they don't seem to be too concerned yet. One of my concerns is her heart... When she was first diagnosed she had an echo-cardiogram. They do this at first to check out the heart... muscles... how the heart is performing and then they use that to check against other scans as the treatment progresses. Some of the chemo drugs can damage the heart, so I want to make sure that isn't happening. With some of the other "rare" side effects that she has had, I don't want to take any chances. The doctor seems to think that her endurance, or lack of, is due to her extremely low blood counts, and that should improve as her counts do.

My husband and I finally had a night to ourselves last night!!! My mom came and spent the night with Alex and Dan and I went to dinner with friends and then we spent the evening downtown. It was a great night... it was such a nice day and the evening was so mild, that we were able to walk all over downtown, have a few drinks... meet up with friends... and then even went to my other favorite restaurant, after dinner, for creme brulee and coffee. It was nice to get away and leave Alex is capable hands. She had a great time with her grandma. Thanks mom!!!! I don't know what I would do without her!

Tuesday is going to be another busy day at the hospital. Alex has her regular appointment in the clinic, and then we head over to the University side and she sees the Neurologist. They have been wanting to see her to check her progress from her stroke. I am really hoping for an MRI soon to see how that dang blood clot is doing. Just to see if there is any, even if little, progress has been made will make me feel MUCH better!!! PLUS, we both are so excited to get rid of the Lovenox shots some day!!! Poor Alex is so black and blue right now from the twice a day shots. It is getting hard finding a place to give them to her, and she has about 5 more months to go... Uggg!!! And another thing... with her platelet count so low, everything bruises her. And I mean BAD!!! Alex joked the other day that she is going to call Child Abuse Services on me. She looks like I have thrown her down the stairs every day since we have been home. I swear that I haven't :) When your platelets are this low, just bumping things causes bad bruising. I would take pictures, but she would definitely call Child Services on me.

I hope everyone is having a good weekend. I will write back in on Tuesday and let you know how all the appointments went.

One more thing... my cousin, Tina, is trying to arrange a blood drive for family and friends. I will keep you updated on when and where. Alex is O+ but, really, please come and donate no matter what type you are. It's a great thing! Alex can actually receive O+ or O- blood.

Please keep the good blood cell vibes coming! We really need them! Thanks for all the thoughts and prayers.

January 22, 2008

Tuesday - Day 15

Hi everyone!

We went to clinic today and it was a busy day there. First we were scheduled to go right to the Imaging Dept and get a CT scan done... of course they had never heard of us, so we sat there for awhile waiting. Finally Alex got another picture of her lungs and we were on our way upstairs to clinic. Alex wasn't feeling all that well today but there ended up being some good parts of the visit. First, her blood pressure is finally starting to come down. We are getting to kick off 1 1/2 pills off the list tonight. Yae!!! If it is still down next Tuesday, all the blood pressure meds are history. Yippee! Alex's counts were the craps. But, we figured they would be. Her red blood cells were WAY down and her white blood cells are almost gone. SO... Alex received another transfusion today (picture posted). If any of you have ever had one of these, you know that they take FOREVER!!! First they have to type and match the blood... each friggin time you do it... that takes a few hours... SO, we sat in the infusion room and watched TV and waited (picture posted). But, while we waited we found out that the lung thingy is definitely getting better and is almost gone. Makes me wonder if maybe it is just some left over goobers in there from the biopsy awhile back... Dr. says "could be", but whatever it is, it is going away. Finally the blood arrived and Alex gets closely monitored the first 15 - 20 minutes for signs of reaction. She has always done well with getting blood, so we were good there. Then we just sat there watching TV while the blood ran in... and then she got her chemo too, which took a whole minute or so... NOW... I learned something new today. Even though this Vincristine can be nasty nasty chemo, there is one good thing... it does not affect blood counts. SO, they think in a couple of days, her counts will start to rebound, and she won't have anything dragging them down again for some time. Which means... maybe we can get out of the house again soon?? Hopefully.

So... here is a funny story... While Alex was in the hospital, they gave her this stuffed animal, snowman, that was given directly to the dog (Murphy) when we got home... Murphy LOVED this snowman. Well, the snowman lost it's head over the weekend and it went in the garbage. Murphy was heartbroken... well, they have this tree in Clinic that is decorated each month, in whatever holiday type whatever we are in... well, right now it is decorated with these SAME snowmen... SO, Alex and I were on our way out of the clinic, and Dan had gone to get the car... so we were walking by the tree and Alex leans over and starts yanking on one of the snowmen...and pulls it from the tree and tucks it into MY coat! (thank GOD they weren't tied into the tree) I DO believe Alex is starting to feel better. She is starting to steal things. We got into the elevator and we were both laughing... and she says "that was pretty stealthy of me". I think the blood did her some good.

On the blood topic... I have never given much thought to blood... the people who get it, or the people who donate it. I have to say that I am so thankful right now for those people who donate blood. It isn't a fun thing to do... and there isn't much immediate thanks for doing it... but I want anyone out there, that gives blood to know... how thankful I am. And to all of you who are able and willing... please continue to give blood. You have no idea who's life you could be saving. This is Alex's 7th or 8th bag of red blood cells... she has also gotten many bags of platelets. She wouldn't be here today without them. SO... whoever you are... Thank you!

I posted a few pictured tonight. The one of the infusion room is where they send you after you are seen in the examination room. The doctor comes in... checks her over and we go over meds and any questions that I have had over the week... they take blood to check all her levels, and then they send you out to the "infusion suite". Here, Alex sits in a lazy-boy type chair and family and friends can sit around her. There are refrigerators with snacks and drinks... and games (mainly for children) and tv's with movies or games. They really try to make your time in there as pleasant as possible. It would be nice if we didn't spend so MUCH time there, but hey... at least we came home tonight!

Ok everyone... keep the white blood cell vibes cook'n! We need them!

January 18, 2008

FRIDAY, JANUARY 18, 2008 12:56 PM, MST

Day 11 - Last day of IV chemo this week

I did it! I am done with the chemo thing! I am sure Alex is glad to have it over also. The 4 day in a row chemo treatments are over for awhile. I have looked ahead in her protocol and I don't see this one introduced again for a LONG time. YAE!!

I am sure Alex's white counts are down to zero now. Hopefully by Tuesday, when we go to clinic, they will be coming back up.

Alex's friend, Valerie, came by last night and they watched a movie together. SO nice to see Alex doing some normal things. She has not been feeling well at all these last two days. They say that this type of chemo she has been getting is cumulative, so maybe we have a few more bad days in store?? The poor thing isn't too bad during the day, but night comes and it is not good! She hasn't been getting much sleep at all and the nausea has been almost uncontrollable. It makes you feel so helpless. I sure hope that the next two weeks will be better for her.

Thank you everyone for all the good vibes! Keep them coming! And thanks for all the nice emails that I have been getting also! It is so nice to see that so many of you are thinking of us.

I have updated the pictures to include me administering chemo, and the chemo kit.

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January 16, 2008 - IV chemo at home

Day 9 - Second day of IV chemo

Today I administered my first chemo without anyone telling me what to do. When I left the clinic yesterday, I was thinking "no biggie, that was simple". Today the pharmacy delivered a HUGE box to my door with the chemo inside and all sorts of safety clothes. So, I suited up and I had it all set out on Alex's lap and had a mini panic attack. Jeeze!!! It was WAY more stressful at home. Dan drove home from work so I wouldn't be alone the first time. First I have to clean off her port (she has a line inserted into her chest that will remain there for the entire 2 1/2 years) and then hook up a saline syringe and I push that about 1/2 way and then draw back until I see blood to make sure I have good blood return... then I push the rest in... Then I get the chemo syringe ready... I hold a cloth under it while I hook that up to her port. I hold that syringe at a level that keeps the bubble inside at the top of the plunger, and then I administered a 1/2cc every 15 seconds. When it is complete I watch the last of it go in and make sure that the bubble does not. You can't clear the bubble in a chemo syringe because you can't drip it anywhere first. Then I hook another saline syringe up and push 1/2cc every 15 seconds for another minute because there is chemo still in the lines... then, after I finish flushing the saline, I hook up a Heparin syringe and push that all the way in and clamp her line. That's it... Simple eh? I was sweating BULLETS!!! I will try to get a picture of it tomorrow so I can post here.

Alex also had one visitor today. One of her favorite teachers from high school, Mrs. Muhlestein from Northridge High. She had such a great relationship with this teacher. I hope she can visit often. Alex loves and respects her very much. It was so nice to see her visiting.

I think I have figured out how to resize some pictures. Since I can only have 12 pictures at a time on here, I will try to put recent pictures and keep them new and interesting. Please check back often for new pictures and news. Today I loaded a picture of her medicine bucket. CRAZY amount of drugs! She takes all of these at least once a day... and most twice... and a few three times a day. We keep track of medication and times on a spreadsheet and check them off daily.

Thank you everyone for everything! All of you mean so much to us!

January 15, 2008

Day 8

Hi everyone!

We had clinic today and actually returned home after the appointment! Yae!! I swear, even what you would think would be a quick visit takes 3 hours. The chemo she received today was administered over 3 whole minutes, and we were there for 3 hours. Now, it will be my job over the next 3 days to give this to her. I actually administered it today under watchful eyes... it was not hard, just a lot of precautions for myself, mostly. Her counts are a whopping 700. Bummer we have lost so many since Saturday. We probably have another 4 to 5 days of losing them before they start to recover.

One exciting thing over the weekend was we took Alex to Best Buy. On Sunday I asked her if she would like to go anywhere... I figured that it would be her best chance to get out of the house while she still had decent white counts. She had gotten some gift certificates for Christmas and she couldn't wait to go. She was pretty tired after just two rows of looking, so she bought a few things and was ready to come home. It was really nice to get her out of the house. This was the first time that she had been anywhere but the hospital or her grandfather's house since she was diagnosed in October. Hopefully some things can get a little better so we can take her out again. I was hoping we could go to lunch on Thursday with my mom, but with her counts, that won't be happening now.

That is about it for today. Alex is resting... she was exhausted after her appointment. She will go back in next Tuesday and get another CT scan done to check out her lung, and then the nasty chemo... Vincristine. Bad stuff that one is...

If anyone has any questions about visiting, please email me at sburbank35@aol.com AND please, keep the good white cell vibes happening. Thanks so much for all the thoughts, prayers and messages. They mean so much

January 12, 2008 - Home at last, home at last!

Day 5

Hi everyone!

Good news! We are home! That is why my update is a little late today. It has been a busy day. It takes FOREVER to get discharged. Alex is free from IV's (until Tuesday) and home resting. Her counts even went back up to 3000 today and her temp was actually 98.5 an hour ago!!! You guys are awesome at sending chilly vibes!!! I am going to enlist your help all the time!!!

I guess we don't qualify for in-patient rehab because you have to be able to withstand 3 hours of exercise during rehab and Alex can't do that. That leaves me wondering if she didn't have us, where would they send her next?? I thought in-patient rehab WAS exactly for people who weren't ready to go home... who need to get stronger? hmmmm... some things in this world I just don't understand. My world is CHUCK full of those things these days.

So the plan is... home until Tuesday (if the fevers stay gone) and then she will have one day in the clinic for IV chemo, and then 3 days of IV chemo at home... and guess what the fun part is??? I will be getting chemo certified so that I can administer this at home when she has these weeks where it is 4 days in a row. Oh, the things that I never thought I would be doing.

Please keep sending your cool vibes... your white cell vibes and MOST of all, some more energy vibes (and in the back of your minds, keep those lung thingy vibes in there too)... and I will update you on Tuesday unless there is something exciting to tell you all before then. Thanks so much for all your messages. I read them a few times a day.

January 11, 2008

Day 4 (the last of the IV chemo this week)

Hi everyone!

Well, not much has changed since yesterday. Alex's count took a small hit and now we are at 2800, so the chemo is working... by next week when they start again, it could be ugly. BUT... it appears that the fevers may be going away. SO, I think we will be out of here tomorrow. Let's hope. Alex is sooo ready to go home. I am hoping to get her into some in-patient rehab though. We will see what we can work out with that today. I really think it would do her a lot of good to be there. I am having a hard time motivating her. I am at a loss as to what is the right way to do it, and all this hospital time has really made her more weak than before. AND that, we can't have. It's really a catch 22... if she gets up and moving and doing the excercises she gets nauseous... when she lays around all day, I can't hardly get her walking. And I really think that is worse. It is very frustrating. I'll let you know what happens.

Thanks everyone for all the thoughts and prayers! And all the good vibes!!! We need energy vibes now, k? I know... I am asking for WAY too many vibes, but you all seem to do very well at this!