If you have more skymiles than you can use, please e-mail us if you will provide tickets for Robin and/or caregiver's next trip to Houston for treatment.
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My latest biopsy report shows that I've relapsed. God has truly blessed me with a remission for many months longer than ever believed possible. I've been advised today that I need to return to Houston to discuss my options with my hematologist and transplant doctor within the next couple of weeks.
I still don't have the perfect 10/10 match that is needed for a bone marrow transplant . The transplant, either way is very risky. But if they have to go ahead with a less than perfect match, with an unrelated donor, it will be much more risky. I'm hoping and praying that when I get to Houston, there will be another study I can go on that will bring me the success that I had with this one.....giving me more time to find the perfect match needed. I was the first one to complete the study with 24 weeks of Decitabine treatments over a 31 month period ...and continued with my 25th, and now, the 26th treatment off study. Only 22 % of the people doing the study went into remission. I was blessed to be one of them. Without that treatment, I would not be here today. I just know God wants me to have that perfect match if I go through a transplant and will give me time to find it. I was actually interviewed for an article in "Cure" magazine's fall 2006 issue that can be read here: http://www.curetoday.com/currentissue/features/mds/index.html . I was interviewed back in the summer before I had the relapse, but it tells more about my disease , if you're interested.
There is actually a way people can get tested now , to be a donor, without having to leave their living room.....if they're willing. There is cost involved, which keeps many people from doing it....others are afraid, even though bone marrow donation is an easier process than it used to be. Here is the link if you would like to share with your friends: Here is the page that tells you how to get the kit to be tested...
it costs $52 but its tax deductable too. The reward in saving someone's life....anyone's life....is, of course, priceless. Through our group's bone marrow drives, (Pickens County Bone Marrow Drive Group) we know of at least 5 matches that have been found for others!
I'm doing Decitabine for the last time all this week. They also gave me an Aranesp shot to boost my red blood cells to keep me from being so fatigued. I'll be in Houston for a visit with Dr. Kantarjian in Houston on Nov. 16 to discuss new strategies or transplant with Dr. Giralt (also Houston). My son, Fritz, plans to go with me.
My biggest need is for PRAYER for the following challenges I face:
- Physical strength
- Wisdom
- Comfort for my family
- Being able to arrange to pay for the expense of living in Houston for at least 100 days and still pay the bills at home
- Being able to arrange to have someone with me during that time...24 hours a day...that doesn't have to quit their job or lose income to do so (Now....only God can come up with that answer...wouldn't you say?) Wow!
- My friends and family to continue to see me as their friend, their daughter, their mom, their sister, cousin, jewelry designer/instructor , fun loving person, etc.......and treat me that way, instead of focusing too much on the disease and either asking me everyday how I'm feeling....or just ignoring me because they don't know "what to say". I want everyone to know that I'm going to have fun every day of my life that I feel like it....and the days I don't feel like it, I'll be thinking about what I can do when I do feel like it. Know what I mean, friends? As always....I love my life..... and plan to LIVE it well. Love your life , too .....
Donations can be made to:
Robin Whittemore Medical Expense Account
Carolina First Bank
5041 Calhoun Memorial Highway
Easley, SC 29640
UPDATE: NOVEMBER 18, 2006
I've just returned from Houston and a consult with my doctors because I've come out of remission and disease is progressing rapidly. Both my hematologist and transplant doctor believe it is time to move on the bone marrow transplant....even though I only have an unmatched, unrelated donor. Unfortunately, I went on Medicare in August and for some crazy reason, Medicare will not pay for the transplant ($500,000.00) until after it turns into Acute Myeloid Leukemia???? Are they crazy? My hematologist can start me on another experimental chemo but it doesn't sound very promising. He highly recommends it's time for the transplant.
I talked to Sue (Dr. Kantarjian's nurse) yesterday and she said the new chemo would have side effects of nausea, rash and muscle ache....and even worse I would be dependent on transfusions...probably both blood and platelets. Doesn't sound so great at the moment...so, I just need time to think. I'm very confused right now about the best thing to do. Please pray that I'll have wisdom to do the right thing.
Am pouring over the studies I have found on the internet and am toying with the idea of just asking Dr. Gluck (oncologist at home) to do something for me. Since I can't have the transplant 'til it turns to Leukemia...it doesn't seem to matter much. Then again, the National Marrow Donor Program's patient advocacy dept. is going to help me write an appeal to Medicare....we'll see what happens. All of my blood counts are low and I'm very fatigued.
I'm trying to make the most of each day....as always. This is just an inconvenience that is cramping my style...hehe. Thanks for all of your continued prayers.....As always....I love my life..... and plan to LIVE it well. Love your life , too .....
UPDATE: DECEMBER 7, 2006
I've had an absolute miracle happen in my life! My blast count has gone back down to 3 per the results of my biopsy! You probably don't know what that means (unless you know someone else with MDS or leukemia) but it's a good thing. My doctor's can't explain how it happened, nor do they expect it to last. They are still saying I need to plan for the transplant if I can get it approved by Medicare. The thing is...it gives me more time for that perfect match to be tested and added to the National Marrow Donor Program Registry, and for Medicare to change their policy. My perfect match....where are you? Medicare....are you listening? Since my blast count went down, I'm no longer eligible for the new studies they wanted me to try while waiting for the transplant. Therefore, for the first time in 3 years, I will skip a chemo treatment this month (?? a bit scary) while they closely watch my blood counts. Once they go kaflooey (a Southern word) again, they'll do another biopsy and start me on the study that best suits the mds/leukemic stage I'll be in. I was talking to a dear friend yesterday and told her how strange this feels. As wonderful as it is, it's like I'm waiting to wake up and be told I'm dreaming. Like, a couple of weeks ago I was preparing for the absolute worst and now, for no reason except for the absolute grace of God, I've been given more time...and hopefully it will be enough to get this situation with Medicare straightened out. A lot of prayers have been said for me, and wonderful things have been done for me, over the past few weeks.....wow....the power of prayer never fails me. Our God is an awesome God, isn't He?! I am so blessed! Thanks for your prayers, meditations, love and light and all those things you've sent my way. Please keep praying...I'll be so grateful! It will be a very good Christmas knowing that I won't have to start the new chemo 'til next year! The blood transfusion I had last week has made me feel much less fatigued, so.....I'm going to get out of the house and enjoy the wonderful days I have........
Life is an experience and a challenge.....Love your life through it all. I'm lovin' mine....and growing stronger in faith with each new twist and turn....God sure doesn't allow me the opportunity to get bored.
"I was told numerous times that when one donates marrow, his or her outlook on life often changes for the better, and I wholeheartedly agree. I now can see the wonderful miracles and happenings of God in everything and everybody around me. From one simple operation that saved someone’s life through the technology of modern medicine, I have a newfound understanding and outlook on life, for which I am forever grateful." Sarah Bryant
Update January 18, 2007
I wish I had great news to tell you like I did the last time I sent out an update. Unfortunately, my cousin, (Donna Powell), and I have just returned from an emotionally trying week in Houston with frustrating news. The preliminary results from the biopsy I had done there revealed that my blast count has gone from "3" back up to "7" in a matter of 6-8 weeks or so. (In plain English, my disease is raging onward.) Again, all of my doctors agree that it's imperitive for me to have the transplant now for the best chance of survival.....even with an imperfect bone marrow match. The longer I wait (as my disease progresses toward leukemia) to do the transplant with the only possible donor I have (the imperfect match one) creates conditions for:
- greater complications from graft vs. host disease whereas my body does not want to recognize the donors marrow as my own.... and serious, long term side effects occur
- my chances of survival diminish greatly
So many of you have been so wonderful to write letters to our senators and congressmen about my situation with Medicare not wanting to pay for my transplant. As many of you already know, Medicare has denied my appeal for the transplant, saying I must wait until my disease progresses to Acute Myeloid Leukemia for assurance of payment. My transplant doctor, along with the head of the bone marrow transplant center at MD Anderson spent 45 min. to 1 hour pleading my appeal with the director of Medicare a few weeks ago. I was told they argued and gave all reasons of medical necessity and urgency for me to have the transplant now, with my advanced stage of Myelodysplastic Syndrome. Medicare would not budge, stating that Medicare guidelines are "law" and can only be changed by the government. Again, Medicare told the doctors to go ahead and do the transplant, send in the claim forms to Medicare and they would "consider" paying for it if the claim was coded right...but would not guarantee payment.
Because of your letters, Senator Lindsay Graham's office also spoke to Medicare. Medicare would not budge. Someone from Senator Graham's office suggested I plead with the hospital to "take a chance", do the transplant and hope Medicare would pay for it. The hospital agreed to discuss a "Medical Override". This meeting was held at MD Anderson on Tuesday. I received a call from them on my way home from Houston saying it was turned down, also, and the only way I could get the transplant now is to pay $500,000.00 up front and hope that Medicare reimburses me. Just how am I supposed to come up with $500,000.00?(LOL) They're not willing to take the chance of Medicare reimbursing them,of course. I fully understand that. The sad and disturbing news is that I was told (behind closed doors) that illegal immigrants, living in Texas, have received transplants there.....paid for by the government. Now, tell me....how is this possible????????
Because I'm not able to have the transplant, I've explored chemotherapy options available both at home and at MD Anderson. There is no known drug that has worked as well as the Decitabine that I took for the past 3 years. Some of the new "study drugs" I explored have miserable side effects. I have told my doctors that I value quality of life over quantity. It was decided that I'll do Decitabine again (at home) until a new protocol with experimental drug called "Sapacitabine" opens up ...in Houston. This new drug is in the Decitabine family that worked for me for so long. It's possible that I'll also need more transfusions and growth factors to keep my hemaglobin from dropping too low. And of course, especially in these winter months, I'll have to be very cautious to avoid colds, flu, viruses, etc. because of my low white blood count and dimished ability to fight off infections.
In spite of everything, I really do feel pretty good right now except for being somewhat tired and a little overwhelmed. My mom's health has been failing for a while now. She became very ill recently and stayed with me for about a week before I left for Houston. She then went to stay with my cousin, Sue Houston, while I was gone. My brother came down to stay with her over the weekend and helped her find a nice apartment in a retirement home where she will be moving this coming weekend. She's putting her house up for sale.....the home we were raised in. It's a difficult time for all of us but exciting, too. We're glad that Mother will not only have her independence and privacy, but also friends in apts. around her, fun activities, hot meals, transportation and no grass to cut. Please keep her in your prayers as she makes this adjustment.
I'm not sure why the doors to transplant have been closed to me, but God knows. I must trust that possibly he's making arrangements for the perfect match to be tested and entered into the national registry. Possibly, He's trying to make me and/or other family members/friends stronger through this situation. Perhaps, He'll use my situation to bring about change to Medicare laws not only for me....but for so many others. (I'm really hoping my friend, Miriam Weintraub, is still working on bringing this to the attention of the nation). Whatever His reason, I love my life and am ready to accept the challenge. Because of your love and support, life is much sweeter and helps me face these challenges. Thanks for being my friend!
Donations can be made to:
Robin Whittemore Medical Expense Account
Carolina First Bank
5041 Calhoun Memorial Highway
Easley, SC 29640
So many people have been asking for updates, I thought I'd better tell you what I can about what's been going on. As I sit up in my bed at St. Francis Hospital receiving a blood transfusion, and writing this to you, I hardly know much of anything new to tell you. Medicare has not changed their position ... still refusing to guarantee payment for me to have a transplant. I still have not found the mythical "Money Tree" to pay for the transplant myself, either. Therefore, I'm basically in "wait and see how long it takes for my disease to transform to Acute Leukemia mode". I stopped doing the chemo treatments around February because my oncologist felt I had taken more chemo than "anyone in the world" and it was starting to hurt my bone marrow instead of helping it. He said my body needed a rest. Since then, I've become transfusion and Aranesp dependant, as my hemaglobin levels continuously drop. My plateletts are also extremely low and my disease continues to progress. Fatigue has set in more than ever, but I do try my best to continue to get out and do things, even though I have to rest quite a bit. This keeps me from doing the simplest things that I love, as much as I would like to, such as crafting jewelry, spending quality time with family & friends and staying caught up on e-mails from members of jewelry groups I belong to on-line.
On a positive note:
- there's a possibility that I will be eligible for a new study drug in a couple of weeks that is not chemo. It's a monoclonal antibody. I don't know how to explain what that is. I just know that my oncologist, Dr. Gluck, seems to believe it's worth a shot. It would not be a cure, but might help me for a while. My doctor's all continue to say I need to go ahead with the transplant, but since I can't, there's nothing to do but try it.
- Members of The Pickens County Bone Marrow Group (including me) have been working diligently since January on another bone marrow donor drive. The testing for this drive will be done FREE...thanks to the National Marrow Donor Program. Come to Palmetto Health Baptist Easley on Thursday, May 17, '07 from 2pm-8pm OR go to www.marrow.org before May 21 to request your free test kit.
- One of my personal goals has been accomplished. I'm excited to say that a piece of jewelry that I made has been published in the spring issue of Studio PMC magazine. This thrills me because it gives me hope and encouragement to continue my jewelry design and crafting when I'm feeling well enough to.
- I have the best group of family and friends in the world. They' constantly lift me up through their prayers, encouragement and actions. Thanks dear ones....I love you!
I'll be having a biopsy on Tuesday of next week to see to what point my disease has progressed. Will give you an update as soon as I know something more. Keep lovin' your life....I'm lovin' mine!
Donations can be made to:
Robin Whittemore Medical Expense Account
Carolina First Bank
5041 Calhoun Memorial Highway
Easley, SC 29640
6 year old Evan
needs transplant, too!
Robin
I got some startling news at the doctor today. I now have Acute Myeloid Leukemia. My blast count count has gone from 6 last month to 70 this month....totally out of control. I will have to also have
another platelet transfusion tomorrow (2 units). Dr.'s say my blast count must come down before they will attempt transplant. Will have to have some kind of chemo immediately (next week) to try to bring it down while MD Anderson is doing donor search and preparing for transplant within next 4- 12 weeks....Pray all of this works out, including finances for transportation/housing in Houston....and for
strength for me and Fritz and Elizabeth. At least now Medicare should pay for the transplant!
My doctor at home and doctor in Houston consulted and decided I can get started on bringing my blast counts down here. That will ease the financial burden and emotional burden to family....and me....having most of my loved ones close by. I'll be admitted to the hospital (Greenville Memorial) on Monday afternoon to start the induction chemotherapy. I have no idea what to expect, but since I'm being admitted, don't think it's going to be fun. Please pray all of this works out, ....and for strength for me and Fritz and Elizabeth....and my dear mother. (Mother's not well and this will be especially hard on her emotionally). At least now, Medicare should pay for the transplant!....there's always a silver lining to every cloud! I'll do chemo every day next week , as an inpatient, and after that they'll see how I'm doing before making a decision of when I can come home from the hospital. Dr. Giralt (my transplant doc in Houston) says it will take 4-12 weeks to locate, do further testing and prepare one of the less than perfect unrelated donors available to me.
As most of you know, Mom (Robin) received some pretty startling news last week. When at the hospital receiving results from a regularly scheduled bone marrow biopsy, she found out that her blast count had risen drastically. For those of you who are wondering what blasts are, basically all you really need to know is that you want this count to be below 5. If they ever got to 20, Mom would have Acute Myeloid Lukemia. Over the last few years, Mom's blasts have hovered around 5 to 10. A few weeks ago her blasts were at 6. So you can
imagine our shock when we found out that they had risen to 70! After contacting her doctors in Houston, the decision was made for her to start an intense chemo immediately. The goal of this chemo is to bring her blast
counts down to a level that will allow her to proceed with a bone marrow transplant. The good news is, she is able to receive this chemo in Greenville, so she is close by for local friends and family to visit. The bad news is, she will be in the hospital for at least a month. The doctors say that she will lose all of her hair, and will be very sick. All of you know how Mom always keeps a positive attitude. Rather than complaining about the terrible sickness she is about to go through, her biggest worry seems to be that she will miss the upcoming American Idol concert coming to Greenville, SC. haha She is trying to talk her doctor into letting her go to
the concert. She has said to me that I will need to be her cheerleader through this. The funny thing is, she has been such an inspiration to me through all of this, that I can't imagine her needing a cheerleader.Regardless, I will certainly be there for her, as I know all of you will be as well. I can't tell you how much it means to her how many people are praying for her. Some of you, (from the jewelry designers community), she hasn't even met in person, yet you care about her as if you have known each other your entire lives. This means so much to me to know that so many people love my mom as much as I do. So many of you have asked what you can do to help. The biggest thing all of us can do right now is pray.
She started her chemo today, and it will be a continuous drip through her port for 24 hours a day for 7 days. Beginning tomorrow, she will start another chemo that will drip simultaneously with the other one. This one
will last for 3 days. They are giving her other drugs to help with nausea. She will be regularly receiving blood and platelet transfusions as her counts continue to rapidly drop.
Many of you have asked about where to send cards, and whether or not she can receive flowers. She is in room 5418 at Greenville Memorial Hospital...(Greenville, SC). Because her immune system isn't working as well as it should, she really shouldn't have any flowers, but would be happy to receive cards, and hear all of your words of encouragement. She can have visitors, but because she won't be feeling well, we ask that visits are limited to about 15 minutes. (No visitors allowed that have a contagious illness or who have been exposed to someone that has a contageous illness.) Mom is able to receive your e-mails, and she appreciates them very much. Unfortunately, there is an issue with the server at the hospital, and sometimes it will not allow her to send responses. (she gets error messages)
I know this is getting long, but many of you have asked me questions, and my goal was to get most of them answered in one e-mail. I will send updates as things change, and as we hear important information from the doctors. Thank you all for your continued prayers, and for your amazing friendship to my mom and family. God bless you all.
Fritz
