Saturday afternoon update: Short version: Jans next visit at Roswell is; October 27 Will be visiting for tests and lab work then. Waiting on lab test of bone marrow and then consolidation arrangements will be made based on those results. Possible Bone marrow transplant then can be arranged once a donor can be located. -------------------------- Long version:) Whew, where to start? Holy crap that was a long day. Okay. I will start with the drive out. Thats was the scariest ride, ever. Just really nervous about her. She did great. (She slept most of the way, which was great) Hotel room; a little pricey but for the proximity and the lack of layout knowledge of Roswell, it was a good choice. We brought the wheel chair with us and that worked out great for all of the trip. Got her bedded down and did the vitals for the evening documentation. Her blood pressure was a little low, so I pretty much stayed up the whole night. (Worry wort.... besides, when I felt comfortable enough to go to sleep, I was to afraid of not getting the wake up call and then being late to the appointment. Uhg:) Friday am, was up in at em early for Jan. Get dressed. Get vitals (readings where much better, so that was a great start for what was to follow). We made our way through the maze of walkways and corridors that eventually brought us to the check in area in Roswell. (Where the picture of Jan I posted earlier, was taken) Roswell was very nice inside. Well laid out. But was very much no different than a hospital. The reception and greeting area was very large though. You could tell there was a lot of people expected here based on the amount of room and chairs and admitting stations. We made it through the admitting process by 7:30. We waited. As instructed, till 7:45 down in lobby area then off to the elevators to go to the third floor where just off the elevators was the BMT (bone marrow transplant) office. Jan rode the wheel chair till just off the elevator and as soon as we got off and entered the waiting area she stood up and walked it the rest of the way. She was not going to let anyone not believe she cant do this. The reception lady for BMT was awesome. Very nice people there. Let me say everywhere we went at Roswell. So, helpful, and commandeering on all levels. Just what you would expect. It was really cool how the rest played out: Now, Im going to explain the rest of the details in three fashions. First will be a run down of how the visit went. Second will be a little more detailed on the specifics. And the third will be numbers, info, and such. I hope to not jump around to much but this is easier and is even now, easier for me just because of the sheer amount of info. So here goes:) Went into the office. First we met with a nurse who brought us back. Did vitals, made her walk around a bit with an oxygen sensor on her finger and took weight etc, etc. Then we met with the new nurse practitioner that works for Dr McCarthy. I have to break here. Throughout this journey so far, jan has met with so many different care takers at different times. From nurses that change shifts daily to doctors that are on weekly rotations. This, in and out care giving is typical and okay. There are many patients that have to be seen and thats okay. Our nurse practitioner at Crouse was the one person though that throughout the whole process that kept tabs on all items that happened daily. She knew what happened and when. This was the thread of knowledge that updated everyone about past issues and was knowledgable since the first day of Jans journey. Now back to the nurse practitioner we have at Roswell. She had pretty much went over Jans whole case prior to our visit. ( Jans history file was the size of war and piece that she brought in with her). This is what I mean by the individualized care that is needed, it seems, to get Jan to the next level. She had gone over all Jans progress but still sat with us and had us go back through all that had happened since the very first day/signs of symptoms. This was a tremendous feeling. Kind of like, now lets hear your side of the story kind of thing. And, after running through it all I realized that there where pieces of the puzzle that where not in the book of war and piece after all. Especially the last bits and pieces of last week. She then laid out what was going to happen from here on out and how the process worked. After that she informed us that she was going to now go get Dr McCarthy and bring him in. This is what else that really impressed us, she said that typically the nurse would go and update the doctor about all that we discussed prior to him coming in, but Dr McCarthy actually preferred her to update him in front of us. So, in came Dr McCarthy and the nurse. They both say down and she proceeded to update him from the beginning. Her update with him was much more medical jargon based though. That was funny. The two of them going back and forth about this that and the other thing. Amazing. He would stop her, turn to us and interject with us on a detail that he needed clarity or more input on. This went on for about half an hour or so. Then he started on the specifics of the BMT. He also explained about the specifics of Jans condition and how he might want to proceed. He is very comical in nature and is just a really personable guy. But with all the talking and what not, he was still able to, in his words, sorry that I have to multi task while we are meeting but Im having a fight with one of our administrators (via texting) like I said, he is very personable. You could actually see the wheels spinning on everything that was being discussed. He actually decided on what was to be next for Jan regarding consolidation while he met with us. The only variable was the tests of the last Bone marrow labs. He says to the nurse whos her oncologist he gets the number and calls Jans Doctor. Right then! Hi doctor, this is Dr McCarthy at Roswell, yes, no, okay, this is what I would like to propose, okay, as soon as tests are back, yes, okay, Im thinking, blah blah blah chemical or possibly, blah blah chemical for the latter, okay thank you and he hangs up, then he says about those labs whos got em? Do you have the number, great. Hello this is doctor McCarthy from Roswell, Janices labs? Oh, okay, when?, okay, As soon as they are ready please stat to my office, okay. Thank you, good bye Not afraid to make his own calls as jan would say, thats for sure. Thats the care Im referring to. After meeting with both of them. We where introduced to Jans new GO TO PERSON for everything here on out. Now you know I dont use names here, (that much anyway) but I have to make mention of one person. But before I do, I would tell you all names as they should be recognized. I would shout their names from the roof tops, but it wouldnt be right I guess without asking first. But I have to break the rules for this one. Back to Jans previous nurse practitioner, will call her Dana. (Who is more than just a care giver to us now) Jans new go to persons name? Yup, Dana:) wild as she would say:) We met with Dana and she explained all the details about the transplant process. And all that accompanies the process including risks. She is also very personable and you can tell that she really knows her stuff and at the same time knows or can sense our nervousness. Really made jan feel comfortable. Me as well. In-spite. After meeting with her: dum dum dum! We met the insurance lady. Lets just say, getting better doesnt come cheap. To say the least. There are mountains, and then there are MOUNTAINS. Well, after sticker shock and Red tape prep, 101 We were off to phlebotomy for a blood draw. 9 vials later we were on our way home. Jan slept most of the way home and is feeling much better today. Okay, how Roswell and BMT works: Jan will be admitted to in patient when a donor is located. She will be: Prepped on day 1 Will be given a very high dosage of chemo from anywhere between 3 to 5 days After chemo, shell get a 1 day rest period before stem cell administration. She will stay in the hospital for approximately 4 to 6 weeks. Doubtful less and possibly more. After she is safe for out patient labeling, she will be released from the hospital but must (and I mean must. Thats part of the agreement/process) remain in the buffalo area for 100 days. 100 days start from the moment the stem cells are administered. (They call them homing pigeons) She must be with an authorized care giver for 24/7 for the remainder of the 100 days. Then its home and. She works towards her next leukemic anniversary. The five year marker. Now the specifics: Okay, Ill try to explain how this is supposed to play out. Jan is to possibly receive another round of consolidation therapy It could be a couple of different approaches. It is all based on what the bone marrow comes back like. Dr McCarthy said that her numbers from the hospital looked pretty good but he definitely needs the results. If the counts arent great, shell have to go for a 3 to 5 day stint at Crouse to receive a consolidation. If real bad, may have to reinduce. That would suck. If not so bad, she might get a small bang to just keep suppressed. Will all know how that plays out next week. The BMT part is pretty risky but worth the rewards. First, they have already started the search for donors. What they do is, they start the paper process. (Yesterday) start the blood process (that was yesterday as well) This will take about a week to get the wheels rolling. What they are going to search for first is a big pool of candidates. This pool will rule out blood types and weird stuff. Jan is a pretty good match person. There is so much involved with this process. I could go on and on about the chromosome stuff and markers and genealogical aspects but i will only get it wrong or will have to really dig in:). Not going to happen:) Anyways, he specifically asked about her ethnicity and she said Im Caucasian he says, kinda of smiling, specifically. She says Dutch, Irish, and German Her donor could come from Europe. Like I said, there is a lot of stuff about that and why she might find a match there, but will leave it at that. She needs an allogeneic donor. Thats someone else stem cells Lymphomas can receive an autologous donor (thats your own stem cells. Just cleaned up and put back)) Long story short on that one is, there are several ways to get a donor, jan just cant be one of them. Theres several books we have to read that covers an awful lot of stuff and criteria that has to be met, but I guess the biggest one here is the graft vs host disease. (GVH) Thats where the new stem cells can attack Jans own body and deem it bad. There are several factors that will be needed to monitor during the 100 days. Thats why she has to stay local and have 24/7 care. She may receive full body radiation. There are some 15 different potentially life threatening complications to this process, but the risk vs benefit out-way all. We received an awful amount of additional long term ramifications from the transplant, but there again, Risk vs Benefit All in all, we have to keep Janice from getting sick, getting better and getting stronger so that she can be excepted into the BMT program. She already has a lot in her favor right now. Just need to have it keep going in the right direction. Courage, strength, emotional, and especially spiritual support are and is what Jan needs now most, beyond what she has already endured. This next leg of the journey is truly a test of survival. But based on her past track record, and all of her support including every last once of my energy She truly has, Got this I putting my bet on her!!! And she is not alone! Sincerely, Shes got this
Posted on: Sat, 27 Sep 2014 19:59:26 +0000
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