Tomorrow may be discharge day! eek

[maureenreynolds]

This is an update written by my xh's wife Amy. One blessing that has come out of all this is finally after 25 years post our divorce, having some kind of relationship with them. It's also one where we are all looking at the same picture and working amongst ourselves to find workable options. Amy is a clear thinker and a say what you mean person as much as I am. We are on the same page with this daughter.

Update via Amy McC (ty Amy for taking notes! I uh...used another method...)

So we all met with Dr. Cullen this morning.(Jan 21) He's the A team for this type of cancer. (eta..Dr Cullen strongly advised us not to transfer Liz from UMD MC and we concurred.)

Elizabeth will finish this course of chemo on Monday. They will evaluate her then to make sure that she is eating, is mobile and is able to manage the pain. She will still have the headaches but the Dr. felt that the chemo will have lessened the pain to a level which would be managed by prescription drugs. Right now Elizabeth is very nauseated and has not been able to keep food down because of the chemo. Also she dozes most of the time and has been reluctant to get out of bed.

Upon her release she will be going to stay with her mom and Dick in Annapolis. She will have an appointment with Dr. Cullen in about a week and at that time they will set up the next round of chemo. That next round would occur in about 3 weeks. Elizabeth would come into UMMC infusion center, get hooked up with the chemo and then would be released (after many hours at the hospital!) that same day with the chemo to return to whereever she is staying. The chemo is 24 hours a day for 4 days. Then someone comes and disconnects her. Then there are more checks with the Dr. and then 3 weeks later, the next round starts. This will be done through the UMMC.

Dr. Cullen anticipates 2/3 rounds of chemo - each cycle 21 days so he figured 9 weeks for that. Concerning radiation treatment, she will start that in about 6 weeks There is an initial evaluation in a month, then two weeks after that Elizabeth will start daily radiation treatment,Monday through Friday, for 7 weeks. That will be done in Annapolis. (eta by Maureen - This is still dependent on Dr. Cullen's advice on release to another facility. But at least much of our winter weather could be over.)

Of course, these numbers of weeks and days are not set in stone -- they are hardly set in paper!! Timing and medication and treatment will all depend on her condition and response to the treatment.

So that being said, Maureen and Dick and Vince and I will work out who does what when and where. We will not be taking her to NC until we see the results of the treatment and the Dr evaluates her. So we will be coming to MD to stay when it's our turn at bat. Those details follow when we have them.

We are returning to WNC on Tuesday and will be back in MD ....... whenever!!

[Lisa Pate]

What a blessing that you all are communicating so well. This seems like quite the process. I'm hoping they are able to mange the pain and keep her nausea under control.

[echogirl]

glad to hear of all the good news.

[ang66]

Thank you for the update Maureen!! Will be thinking of you and hope things improve as the weeks go by. God Bless.

[Aino]

It is good that you all communicate so well. These are good news. Thanks for the update.

[digigrandma]

It all sounds so complicated and a tough road you are on, Maureen. I hope the nausea and the pain can be alleviated as much as possible for your dd while she undergoes treatment.

[anke]

Oh my goodness, you sure have an ordeal in front of you. It's a good thing you are pulling together on this front, that will be such a blessing! We'll continue to pray for all of you, you will need all the strength you can get!

[connieg]

It's going to be a bumpy hard road and I will continue to pray for you all.

[esther_a]

So much to work through. It is terrific that you are working so well together to get through this very difficult time.

[justbnsharon]

I agree it is such a blessing for you all to be working together on this process. Sounds like it will be lengthy and complicated - and hard! One step at a time - one day at a time. You will all continue to be in my prayers.

[blhdvm]

This will be a long road, I am happy to hear that a bright spot is the communication and willingness to work together that has come about. Blessings and prayers!

[Deborah Wagner]

This just breaks my heart....glad to hear you are finding some positive notes through it all. Prayers are with you.

[home in ottawa]

Thinking of you ALL moving forward. Good that everyone is focused on Liz. Wishing you strength Maureen.

[beehive50]

Elizabeth will fare so much better having all four of you working for her and supporting her and loving her... it's truly wonderful that you're all pulling together on this. Continued hugs and prayers...

[conorsmum]

Thinking of you Maureen.

[KimR+]

What Aflac to be traveling down. It's wonderful that there is good news and communication.

[MINIDEB]

Maureen, I'll continue to keep all your family in my prayers...I'm glad the communication is working during this difficult time! It's wonderful there is good news.

[blkcow]

Keeping you all in my thoughts and prayers.

[earlofoxford]

What a blessing that all of you are on the same page and working so beautifully together for the success of Liz's treatment.

[TereseC]

Happy to hear the good news!

[maureenreynolds]

Well, it was another day up to Baltimore and back but no discharge. I suspected as much but we 4 parents needed to finalize our uncertain plans! That worked out well, and it is so much of a blessing to have communication, a lot of laughing at the futility of TRYING to plan etc etc. We have all grown through this and if that's all that changes, it could be enough.

Liz has survived so many things in her life that none of us were surprised that her rare cancer was one that the head of oncology is very, very familiar with and has treated often and with great success. Another hospital might never have come up with the specific diagnosis as quickly.

Tomorrow we call after 10 to see if discharge will happen. Right now she is not eating and is not mobile and as those are two criteria for discharge I wonder...but that is for the hospital to decide not us. The NC parents will go home tomorrow and come back in a month and take over from us. They'll rent a house on a month to month basis. Fortunately, there is a big market for that kind of housing rental with a big military complex nearby. A month on and a month off for each of us sounded good to all of us.

Sadly for Liz, this last day of chemo will end at 03:00 tomorrow. That means one lousy night trying to sleep.

Dick and I and the other set of parents at least feel like we have an idea of what lies ahead and what we need to do. Anything could change but tonight we all felt like we could at least see the road ahead a bit, not just total uncertainty. We may not be able to control the circumstances but now we finally see them with a bit more clarity.

[blhdvm]

So much to deal with Maureen! Hard not to feel overwhelmed!!! KNow that you have been in my prayers!

[Janet1949]

Thank you for updating us Maureen, you know that we are ALL still praying for you, and so very pleased to hear that the load is being shared.. [cyber hugs]

[lizj]

Keeping a good thought for all of you. That was nice of Amy to pinch-write!

[ExoGonia]

Oh Maureen I am ashamed to hear very late about the serious health problem of your daughter. My own problems with my husband's health keeps me away from the gallery and the community for a long time. It's wonderful that you are a great team. I will keep you into my prayers.