Thursday, January 27, 2011

Day 183

Hello,

Well, we are back at the hotel. Rita was discharged this afternoon - and not a day too soon either. She didn't hit all of her numbers but I think that the Doctors knew that there would be hell to pay if they didn't let her go. We are safe - it will just take a day or two longer to clear her system of the Mtx. She is taking pills for that and they will monitor her closely at the clinic.

So, we have finished all of the courses required prior to stem cell transplant. It's hard to believe that we have arrived at this time. It is both scary and at the same time a huge relief to have the chemo treatments behind us. Now, it will be all of the challenges that come with transplant. First the mega doses of chemo to get ready for the transplant and then waiting for the graff to take hold and praying that there is no significant amount of graft vs. host disease. We will be spending the next couple of weeks getting Rita's strength back up so that she can endure the transplant process.

We look forward to some good food and good sleep tonight. The hospital stay was exhausting for Rita so it is really good that we are back here where she can get some good food and some good rest.

Good evening for now - Take Care, Dave & Rita

Tuesday, January 25, 2011

Day 181

Hello,

Well, only one day late but, we have completed the last intrathecal MTX treatment of course 3 and hopefully, forever!! Things went pretty good today and Rita has handled everything like a storm trooper. She has even walked the hallway today - once for 7 laps and once for 9 laps!! While this was delayed due to all of the complications that we experienced last week, we feel really positive that we are back on track and are looking forward to being able to go back to the hotel on Thursday. It will be important for Rita to get back to an environment where she can eat good and sleep good. We haven't had much sleep for the past three days because they keep pumping fluids into Rita and then she has to go to the bathroom to get rid of them. She has had to go at least once every hour for the past three days. In addition to that, they keep coming into the room every few minutes to see if there is a spider or something in the corner, but we think its just to make sure we don't fall asleep!!

So, we are getting close to the end of course three. That means that stem cell transplant is the next step. It is hard to believe that we have come so far and that now, we are on the doorstep of the last critical step. Please keep Rita in your prayers as you have throughout this process. This is our best chance at a cure and we can use all of the help we can get. Hoefully, we will get home for a few days before we start the stem cell transplant. Rita will be trying to recover and gain strength which means that she may need to rest quite a bit so, please, be sure to call before coming over to see how she is feeling.

So, all in all, course 3 has been OK, if it wasn't for the blotched intrathecal last week that started all of the problems/complications. That really started a cascade of events and set Rita back quite a bit. We are hopeful that we won't run into any of these problems this week and that we can get through this with nominal outcomes.

Goodnight for now - Take Care, Dave & Rita.

Saturday, January 22, 2011

Day 178

Hello,

Just a quick update. Things were better today. Rita walked 8 laps (6 + 2) and is feeling a little better. She had a fever this morning and we are hoping that was the last one so that she can get her next treatment on schedule. She needs to go 48 hours without a fever in order to get the next intrathecal. Keep your fingers crossed.

Rita slept alot today and I think the rest was good for her. We are in the middle of another food channel marathon. Its good to see her awake and alert. If all goes well from here, Rita will be able to stay on schedule and get her chemo on Monday. She is really focused on keeping to the schedule so that the rest of the process goes as planned. For those of you that know Rita, it is important to keep on schedule. She has been so organized all of her life and has been in control of all that is going on around her. I'm sure you can appreciate how difficult it is for her to not be able to control this process. Poor Dr. Wetzler - he has met his match here. Rita keeps challenging him and finally, he just says "There is nothing I can do about that - I'm sorry." Today, Rita didn't ask too many questions and you could see the relief on his face. I said "Doc - she let you off easy today". He didn't say anything but he did get a huge smile on his face. That's not someting you see very often so I'm sure he felt like many of us have when Rita's interrogation is over.

So, things are improving and we hope for a better day tomorrow. Thanks for all your well wishes and prayers.

Well, time to go - Love, Dave & Rita

Friday, January 21, 2011

Day 177

Good Evening,

OK - sorry for the lack of information this week. Actually, I didn't really know what to say. Its been a tough week. Rita had a complication with her lumbar puncture on Monday and things kind of went downhill from there. The complication from the lumbar puncture caused a leak in her spinal fluid which resulted in severe headaches everytime she sat up or stood up. As a result, she has been pretty much flat on her back all week. Then, she started retaining fluid and some of that went into her lungs. Her weight on Tuiesday morning was 127 lbs. and by Wednesday morning, she weighed 140 lbs. They need to keep the fluids up for her spinal leakage and to keep her blood pressure up but, they don't want her to retain too much as it could cause a pneumonia or other complications. The fluid in her lung has caused significant pain in her side when she takes a breath. So basically, she can't sit up or stand up or breath without experience significant pain. Other than that, she feels pretty good!! Also, she has had some fever and so, they are treating the fluid in her lung aggressively as though it is a pneumonia but, they don't know for sure. Now, just because we need one more thing, one of her lines have cultured positive for infection so they may have to replace her PICC line. We will know more about that tomorrow.

All of this is considered to be known complications from this chemo treatment so it is not anything that the doctors haven't seen before. Naturally, its all stuff that we haven't seen before so it is pretty disturbing from our point of view. Rita is really concerned that this will once more delay her transplant and thereby extend her time out here. As of right now, we are still in the window for a 2/23/11 transplant and we are keeping our fingers crossed that it goes accordingly.

On the brightger side, Rita's headaches seem to be reducing in intensity and we even walked two laps around the nursing station a little while ago. It was really hard for Rita to do this but, she did it and I take it as another important step forward. We will try again tomorrow but for tonight, we will just try to get as much sleep as possible. As you have all heard before, sleep does not come easy around here as someone is barging into the room on almost an hourly basis around the clock. Rita's normally cheerful greetings to the staff are starting to diminish!! Now its more like "What can you possibly want now???". I know that they are doing their job and I appreciate that they are keeping such a close watch over Rita. She will also realize this when she is feeling better.

So, goodnight for now. Love, Dave & Rita.

Monday, January 17, 2011

Day 173

Good Evening,

We have completed the second Monday of course 3. This consisted of vincristine IV, MTX IV, and MTX IT (itreatheacal). All we have left is MTX pills which will be MTX pills every 6 hours for the next 18 hours and then they start the Luecovorin (rescue drug) every 6 hours until Rita's MTX level gets down to the required levels. Last week, that was on Friday so we'll see how it goes this week. Rita is feeling OK - a little tired and she feels like she has a cold. She also has some painful sores in her mouth which makes it hard to eat. She is still walking good and we just finished 13 laps around the nurses station. While we were walking, Rita would look into this one room every time around. After about 5 times, she said to me "That person has the same pillow and blanket as I do". Yup, you're right, it was our room!!

This is the most intense day of each week during course 3. Only one more to go.
Rita's numbers continue to be very good. We are hoping that when this course is finished, she will be able to come home for a little while. We do have a tentative date for her stem cell transplant - 2/23/11. We will get more information as we go along and as always, evrything is subject to change. If all goes according to plan, 2/23/11 will be considered to be Rita's new birthday. I think she is using that just to get one more present each year but, I'm fine with that!!

We continue to be optimistic and trust that with all of your prayers and positive energy, Rita will do just fine, be currred and return to her normal lifestyle - the one that has made her so special to all of us. While this experience will have a profound impact on us, I just want Rita back the way she was. That is more than anyone can ask for.

So, Goodnight for now - talk with you later, Dave & Rita.

Thursday, January 13, 2011

Day 169

Hello,

Well, we are back at the hotel. Rita was discharged from the hospital yesterday after completing the first phase of course 3. Rita gets pretty heavy doses of chemo for three days each week followed by something they call a rescue drug. That drug helps to flush the chemo out of Rita's system. They test her blood and the level of chemo (MTX) has to be below a certain point before she can be discharged. After that, we go to the clinic as an outpatient each morning until the level gets down to another level. Then, they can start the next phase 72 hours after Rita gets to that level. Rita did develop a fever last night but we didn't have to go back to the hospital because, for now, her numbers are relatively good. They did do a lot of tests today at the clinic and we will find out the results tomorrow when we need to return to the clinic. They have put her on more antibiotics as a precaution.

All in all, its going pretty good. We are keeping our fingers crossed that her fever breaks and that she won't have to be readmitted due to an infection. We have learned to be flexible as far as the schedule of treatments goes as alot of it depends on how Rita handles each treatment. Rita dosen't like the delays because it means that she will be out here a little longer with each delay. I keep telling her that it will all be worth it once she has been curred and all of this is behind her. The process can take a little longer as long as the outcome is positive.

So, we continue to move forward which is a good thing. I'll let you know more when we know more.

Take care, Dave & Rita

Tuesday, January 11, 2011

Day 167

Hello,

Just a quick update - Rita has finished her chemo for this week. Naturally, it will take a few days (7 to 10) before the effects of the chemos manifests themselves and we see how she responds to the treatment. We are hoping that her body clears the MTX is short order so that we can go back to the hotel for good food and good sleep. We will know more tomorrow.

Rita is feeling pretty good so far. I have noticed some slight changes in her eyes and she has been a little tired. Also, she has been just a little wobbley when we walk but her endurance is good. We will be walking again soon so I'll see how she is doing. We are happy to be on 5 West with all the familiar faces. Everyone here is so happy to see how good Rita is doing. These people have seen it all so we are encouraged by their optimisim.

So, for tonight, all is well. We are settling in for a little tv, conversation and hopefully, a few hours of uninterruprted sleep. Goodnight for now and keep the faith. We promise that we will.

Love, Dave & Rita.

Monday, January 10, 2011

Day 166

Good Evening,

Well, Rita got through the first day of course 3 in pretty good shape. The intrathecal treatment went well and Rita has tolerated all of the chemo that was adminsitered today. It has made her kind of tired and she did take a couple of naps today. We were still able to get our mile of walking in and she seemed to eat OK. We do hope that we can maintain the gains we have made over the past few weeks as she will need the strength and energy for the transplant. Each Monday for the next two weeks will be the hardest part of this course. The rest of the week is pretty much pills and IV's - no needles as far as we know and Rita is getting much better at taking the pills. Now, we wait and see how this course of chemo affects her numbers. We are hoping that she will not get as far down as she has in previous courses but, we will have to wait and see.

I'll keep you posted as this course progresses.

Take care, Dave & Rita

Thursday, January 6, 2011

Day 162

Good Evening,

Just wanted to update everyone on Rita's bone marrow biopsy results. How does this sound - there is no evidence of leukemia!!! She has 2% blasts which is normal. I know this sounds a little confusing but, we all have some blasts in our systems - usually less than 5% so, basically, Rita is in a normal range.

This is the result we were hoping for so we remain encouraged. We start course 3 on Monday and we don't really know what to expect. We will keep you posted on how she is doing as we move forward. It has been a great 3 weeks at home and Rita has really made alot of progress - progress that we believe will help her to sustain through the next phases of her treatment. So far, Rita has been able to hit the marks required for a successful outcome and we are confident that she will continue to meet or exceed each goal along the way. We stay focused on the outcome and continue to take comfort in Dr. Wetzler's words "You are doing outstanding". That is what we expect to hear for the rest of this process.

So, all is well. We are happy and trust that, with the assistance of your support and prayers, we are going to beat this thing.

Thank you for all of your support, prayers and acts of kindness, Dave & Rita.

Monday, January 3, 2011

Day 159

Hello,

We are back home from Roswell for one more week before Rita starts course 3. Today went very well. The bone marrow biopsy went smoothly - we will probably get the results on Thursday. Rita gained another 2 pounds and is now up to 126. That's 12 pounds in three weeks. I'm still shooting for 130!! Today, Rita asked Dr. Wetzler how she was doing (amoung many other things). He said, and I quote: "You are doing outstanding!!" I can't tell you how good that made us feel. Dr. Wetzler is not the type of person that would just tell you what you want to hear so, when he says "outstanding", that really means alot and that all of Rita's hard work and that all of your prayers are paying off. All of Rita's numbers are excellent. It has been a very encouraging day.

Course 3 will be 30 days with around three days of inpatient chemo each week for three weeks and then a week of rest before the next bone marrow biopsy. Rita will get chemo in her central nervous system, through and IV and orally. They will keep a close watch on her so we will probably be in Buffalo for the entire 30 days. Then, we will probably come home for a bit until the transplant. Its not just having Rita ready for the transplant but, thay have to get the donor ready also. So, the timing will be determined after the next bone marrow biopsy. Rita has let it be known that she wants to get to transplant as soon as possible. She just wants to get on with it so that she can return to a normal life style. Dr. Wetzler understands this but told us that it will all depend on how Rita does over the next course. As we have become accustomed to, we will need to stay flexible, be patient and let the process work out the way it does. We really dodn't have much control over the process but, I think we are doing the right things to have a positive affect on the outcome.

OK - enough for tonight. Goodnight, Dave & Rita

Saturday, January 1, 2011

day 157 Happy New Year!

hi everyone!  hope you are all enjoying your new year's day.. we are!  mom asked me to take her on a "quick" shopping trip to return a few items from christmas and check out the sales.. 4 hours later, i had to drag her home!  she's getting back to normal!!  we had a great day and she's now resting while we're getting dinner ready. 

mom and dad are off to buffalo tomorrow for monday's bone marrow biopsy.  if all goes as planned, mom will have the procedure done around 9am and will be heading home by maybe noon-ish.  mom was hoping they'd just start course 3 monday, but Dr. Wetzler said they'd have to wait for the BMB results which most likely would come wednesday or thursday... so the plan is to start course 3 on next monday. 

course 3 will be 28 days long, then we're on to the stem cell transplant.  we don't know exactly how all that will pan out, so as we get information, we'll share with all of you.  mom's hoping she can start the stem cell transplant immediately following course 3, but we might have to wait for her numbers to go up. 

mom's had such a great visit home.. she's continued to get stronger and she's been doing a lot more to take care of herself.. it's amazing to see how much progress she's made! 

thank you for checking in on us, continuing to pray and follow the blog and for the uplifting cards that you have all been sending. 

we would like to make a toast to all of you.. here's to a year filled with love, health and happiness, to friendships that continue to grow and to a cure for mom.  cheers.

love.