One more ride

We visited City of Hope today, this time the whole family ( Hope, James, Joel, Candy and me) for the meeting before I go in. Only as it turns out that is not what is going to happen.Good news I still have a doner! Not so good news my counts (numbers) are not where they need to be so we start a new plan. The transplant is being moved back three weeks so they (the Dr's) can work on getting my numbers down as needed. M spike, Agi, protien, and kidney numbers all need to come down. Red, white, platelets all need to go up. Sort of like a math brain teaser. Anyway I will be getting infusions on Mon. and Thur. at city of Hope. I will get valcade, and Cytoxan both are chemo plus Decetron (steroid), with all the keep me from getting sick meds. that should make life interesting and it should move the numbers in the right directions.

So for those of you still on the ride with me it looks like the rollycoaster just took off again before we could get off. Hang on for the ride, throw your hands in the air and scream. We might as well have so fun if we are going to keep riding.
Pat
Remember to look for the Miracles
they are everywhere

New Dates

We ( Joel, Pat and myself Hope) went to City of Hope again today for a Doctors visit. (she will be going every week until this is over). I told you not to write the dates in ink, yes we have new dates. The new admit date is not set yet, she has the option of getting her chemo and still being at home for the first week if her numbers stay the same or get better. So we are looking at the end of September around the 28th. The donor is schedule (yes scheduled) to donate on October 1 and she would get the cells on the 2nd. She needs to be in the hospital for nine days before that.

We are having a family meeting with the doctor next week to find out how best to take care of her after she is release from the hospital, but having to stay close to the hospital. Please let me know if any of you are interested in helping with the after care. Just email me or call. I am planning to video tape the meeting.

Other than that she is doing good, tires easily, sore back, and more on the tired end. If you have question post them in the comment section and I will do my best to answer them. Take care and thank you all for your thoughts.

Hope

Third time is the charm. I hope so, if you have been counting doners we are now up to three . Number two couldn't be a doner until Nov. 2010. So the new doner is a male , 20 years old with -B blood type. He matches all but one Major marker and is only a minor mismatch on that marker. He also doesn't match on one minor marker. What does that mean to me? It changes my percents. I now have a 40% chance that this will all work and I will be cancer free before it was 50%. I have a 35% chance that there will be a life threatening host vs doner reaction and or death before it was 25% . I have a 25% chance of going through all of this and being right were I am with the cancer after, that percent is the same as before. Dr. Parker said it just means he will have to adjust the rejection meds, that with the new meds that are out now we should be fine.
Why not wait and see if I can find a better match? My cancer is being very uncooperative. Even on the chemo it keeps trying to take over. The Dr. is having a hard time keeping my numbers down. We can wait but there will be significant damage to my health. So we go with the new doner. I am very lucky I have a third doner to go with there are lots of people that would jump at a chance to have any kind of a match.
We will know for sure if this doner is a go next Friday. I will update all of you than. Have an awesome week and please enjoy each day.
Look for the miracles.
Pat

More Donor issues

Okay so we do not have any idea of what is going on, all we do know is that City of Hope changed my mothers admit date again. So now it is not until the 28th of September. Please do not write this date anywhere in ink. I have made that mistake one too many times. Write in pencils so you can change it as needed. All joking aside.

I wanted to update everyone so that they know. My mother has a doctors appointment tomorrow and hopefully we will learn more. But for now all we know is the date has changed once again, and we will continue to ride the emotional roll coaster until we have my mother cured.

Thank you all, sooner or later we will need your support and help in my mothers recovery, I will keep everyone posted as much as possible.

Transplant Update

Today was another day at City of Hope. Today was the first day we had a bad day there as far as having things go smoothly. Today things did not go smooth. City of Hope put in a new computer system and everyone is still getting use to it, sooo things went wrong. The only major issue was a accidental cancelled appointment, but that was worked out in the end. So all well that ends well. One day in three years is still a great record.

Okay so on with the transplant information. So the original donor backed out. We now have a new donor. She too is in her thirties and in America. They match on 10 out of 12 markers which is good but not great. So the new time line is: my mom will check in on September 14th and then the count down begins for the transplant. Usually 9 days after she is admitted they do the transplant. It goes like a count down for blast of (T minus 9 days ect.. ) the day of the transplant is day zero and the they count up after that. I will most likely will be referencing these dates in the future, for example she is at -1 day to transplant or she is 3 days post. Just so you all know what I mean.

So for those who may not know the whole roll coaster story here is a brief outline: the original date was September 7th, but then we were told the Donor could not do it at that time, she could not do it until middle of October, so then it was a wait until October, then we got called that the old donor backed out and we have a new donor and the date is now the 14th of September. So it was hurry up, then a wait, and now hurry up. So mom went in today and start all her pre-admit stuff. The donor is schedule for the 4th for all her work up stuff, so we do have to wait for confirmation that she is healthy enough to donate before they go to much further. They may or may not have to do another biopsy on mom, though, which Sucks big time, the last one will not count because of the time frame, though we are holding out hope that we make it in the 30days from the last one. (So she does not have to have it done). She will be seeing the doctor weekly from now on. Next appointment will be more prep work and brief meeting with the doctor and then on the 10th of September will be a big meeting about how things will move from there. I guess that is all for now. It has been a very long day. We were at City of Hope all day, and walked back and forth across most of it today.

New time frame

Okay so there is more information from the doctor. My mother (Pat) and father (Joel) and brother (James) went to City of Hope to see the doctor about the time frame for the transplant. There was also concern about my mothers blood levels and palates. So on those two notes we have good news and bad news. The good news is that her blood levels were better not great but better. For the bad news the donor states that she can not give the cells until October so now the time frame for my mother has changed and she will not go in until mid October for the transplant, and the doctors are also going to contact the other possible donors to get more blood tests (just in case). We do not know why or what happened with the current donor, just that she can not do the transplant until October. So we wait. Other than that we do not know. The doctor did not seem happy but not much we can do, she will continue on the chemo for now.

In other news my mother and me went to a support group at City of Hope for blood cancers. It was nice, I believe that we will go again next month. It was nice to talk with people in the same boat. There was support people and patients in attendance.

Well I guess that is all the news for this week. Take care.

Hope

Bone Marrow Biopsy and City of Hope Visit

So today Pat, Joel, and myself (Hope) went to City of Hope for my mom to have her bone marrow biopsy. Which is funny from my point of view but not my mother's (Pat). She is very funny when coming out of the drugs they give her. Today when she came out she was talking to someone? about being a algebra teacher, so the doctor quizzed her about some equations. He was impress with her ability to do that kind of math that drugged. He stated it must be part of her cell structure. He was impressed. Pat came out of it great and they doctors stated that they got a good sample. So now She has another whole in her butt, but other than that everything went great. Pat's cancer numbers are up again. The doctor and us think this is due to the fact she was off her chemo for so long, with her trip and then getting sick. So they are starting her again with no break this time. In order to get the numbers back down. At this point the doctor does not think it will affect the transplant date, however the number do need to go back down before they can do the transplant. So send thoughts about cancer numbers down and good cells up. We will know more after her appointment next week. Doctor Parker wants to see her next week to discuss the biopsy results and her blood work results.

After her biopsy she then had to visit the social worker for City of Hope to make sure she is prepared for the transplant and that she has a good support system. We meet with Melisa and she was a LCSW and very nice. She seemed to think we had a pretty good support system ( I do too). Overall the visit went well. We were there most of the morning, from about 7:30am to 12:30pm Long day. By the end of the day I was done sitting still and was annoying my parents, not much has changed in 35 years. Oh well.

Hope
P.S. I found a website that does a great job of explaining the transplant process and all that goes with it. Here is the link: http://www.marrow.org/ once there then click on Patients & Families tap.

Thank you all for your caring thoughts and statement.