Well it's been a busy few weeks... Eric has been back work plugging away working 12 hour days with no end in sight. Whewwww... he comes home pretty spent and tired but I know he is grateful to be back to work and getting back to "NORMAL." We laugh that we should be careful what we wish for right but seriously we are so grateful that we are where we are right now. It's exactly the month mark from when we started Eric's transplant journey. Last year at this time we had just found his donor and in two more weeks we were getting ready to fly down to start his bone marrow transplant! WOW!! I am so thankful to be at this point and seeing how far Eric has came.
We have had alot of reminders of how lucky we are, what a miracle Eric is recently with Eric's good friend Patrick passing away in June ( Eric and Patrick had the same cancer and started their bone marrow transplants together at the same time), Eric's Aunt Carol passing away a few weeks ago from her valiant battle with her cancer. We recognize the blessings and we cherish each day and moment we have as the gift it truly is! I reflect on my emotions I was feeling last year at this time I was crying alot , preparing to leave the kids for 5 months, getting them ready for school and knowing that we were about to embark on the hardest journey yet as a family!
What a difference a year can make! I am so thankful to the Lord for his countless tender mercies and blessings we have received. Sometimes you feel if this makes any sense a little guilty that Eric has made it and that he is doing good, you question things and wonder..." Why couldn't Patrick have made it then? " Why couldn't Aunt Carol have made it?" but then I remind myself that just because they passed doesn't mean that they are gone from us..we all have a mission and purpose in life and just because their physical body could not hold on any longer their spirits are fulfilling a greater purpose. They both are such amazing and wonderful people whom changed our lives for the better and we would not be who we are if we did not know them and have them touch our lives as they did!
Eric and I both know that our journey is not complete and we will still have trials, bumps in the road but we recognize with the Lord all things are possible and we can do anything. On paper this was a horrible, sad tragedy that shouldn't have worked out. Many times I had doctors look at me and tell me that this is nearing the end and that they would try to do all they can do to give him more time, keep him comfortable but I am so thankful that in those moments, those dark lonely hours I could turn to the Lord and feel his arms wrap around me and provide peace and comfort. Sometimes it would be just enough to give me a sense of calmness so I could close my eyes and fall asleep and wake up with a new outlook, more faith and hope, peace. That is what the Lord provides all of us..that overwhelming unconditional love.
Eric went to the doctors yesterday and he lost again 5 pounds.. his doctor was a concerned and said " Seriously Eric are you not eating I need you to quit losing weight!" I told his doctor that he really is eating more than he has in the last year and that I really don't understand why he keeps losing weight cause he is eating... Eric responded in his regular humorous way and said " Dr. Chandramouli I think my donor just must have an amazing metabolism and really in shape" we all just laughed! Eric's counts are pretty good his white cells fell a little to 4.1 (still good), red cells are 4.57 (they went up) and his hemoglobin is 45.8 with his platelets going up to 112!! All these are really good some of these levels are the highest he has been in the last seven years! We are so grateful to Eric's donor whom we think of often and how he has given the gift of life, unconditional love to save a strangers life! We are so grateful the Lord for Eric's health recovery process and his body being able to fight and be strong, getting stronger each day! We are grateful to all of you as well for riding this roller coaster and traveling this journey.. providing us love and support! We couldn't have done this past year without all of you and the Lord, the gospel and faith in the journey!
Thursday, August 12, 2010
Thursday, July 29, 2010
Update....
Well it has been a busy week since Eric went back to work. He is excited to be back and he has loved seeing all his law enforcement family/buddies. Eric was suppose to edge his way back but for those of you who know Eric well he doesn't know the meaning of that. His first day back he did 10 hours and the next days that followed 12 and 14 hour days just to get through all his case load and organized. He loves his job but I am not a fan of him putting in so many hours but what can I do. He came home his first few days and took 2-3 hour naps once he got home which is well deserved! I am proud of him for this next step he has taken to return to work and so early as most bone marrow transplant patients do not return until 2-3 years after their transplants. I am cautious but so proud of him and know that he wants to be back to a "normal" life again and that this is an important step for him towards that. He is a hard worker, wonderful man whom I am blessed to be married to.
We had some sad news the other day Eric's Aunt Carol passed away from her cancer unexpectedly she took a sudden turn for the worse. Her viewing and funeral is tomorrow and Saturday. We are so sad to have her pass but we know she must have loved the reunion with Eric's Dad (her brother) and her mom whom I am sure was there to bring her to the other side. I am not sure if it is just us lately but we feel so surrounded by this horrible "cancer" and we are feeling like we are losing more and more wonderful people to it. What a wonderful day it will be when there is a CURE for cancer!!
Eric is doing well he is still decreasing down on some of his post transplant anti rejection medications. We are still in the thick of paying for all his medications and moving fast towards our out of pocket maximum $8,000.00. I can't believe we will hit our out of pocket maximum for the year just in Eric's medications within the first 30 days of it! It is crazy, his medications are well over $10,000.00 a month alone, on last Friday I went to the pharmacy to pick up just 4 of his medications for 30 days worth and it was $4,453.00!!!! The pharmacist when she sees us just shakes her head and says" OK are you ready for the amount today- it's an arm and a leg!" Whew I can not wait to hit this out of pocket maximum and start having everything paid for 100%!!! It's hard to pay all your normal monthly obligations and on top of that come up with $8,000.00 all within a 30 day time period. There are not payment plans for required prescription medications that you NEED to LIVE!
That being said we are blessed Eric is doing well and accepting his donors marrow and 100% grafted with his donors cells! We recognized the blessings and miracles the Lord continues to provide to us and we are grateful. We have experienced on many occasions tender mercies from the Lord that without him I do not know where we would be. I am so grateful for Eric's donor and for his selfless unconditional love and act of kindness to save Eric's life! I pray for him and his family everyday and know that without him we would not have Eric here today with us! What an amazing feeling it must be to know you saved a person's life and for nothing in return just out of unconditional love! There are amazing people in this world and it restores my faith and hope.
Eric's counts are pretty good a few things went down a little but that is to be expected all in all pretty good.. Eric's white cells are at 4.4 a little down from last time, red blood cells 4.33 with his Hemoglobin at 14.8. His platelets went down a little from 110 last time down to 102 but still hanging in there. His creatinine is good and his kidney functions and liver is at the levels they expect right now. We just got done with Chelsea being in the Bountiful 24th July parade for her Woods Cross High School cheer team, the kids returned from Youth Conference/Quest and loved it! Just signed Austin up again to start football - there goes our Saturdays right! It is good though back again as a family making the memories we so have missed over the last year! All in all things are good at the Barker home and we are continuing on this journey hopefully coming down the hill now and piecing back together our lives. We know that with the Lord and our continued faith all things are possible!
We had some sad news the other day Eric's Aunt Carol passed away from her cancer unexpectedly she took a sudden turn for the worse. Her viewing and funeral is tomorrow and Saturday. We are so sad to have her pass but we know she must have loved the reunion with Eric's Dad (her brother) and her mom whom I am sure was there to bring her to the other side. I am not sure if it is just us lately but we feel so surrounded by this horrible "cancer" and we are feeling like we are losing more and more wonderful people to it. What a wonderful day it will be when there is a CURE for cancer!!
Eric is doing well he is still decreasing down on some of his post transplant anti rejection medications. We are still in the thick of paying for all his medications and moving fast towards our out of pocket maximum $8,000.00. I can't believe we will hit our out of pocket maximum for the year just in Eric's medications within the first 30 days of it! It is crazy, his medications are well over $10,000.00 a month alone, on last Friday I went to the pharmacy to pick up just 4 of his medications for 30 days worth and it was $4,453.00!!!! The pharmacist when she sees us just shakes her head and says" OK are you ready for the amount today- it's an arm and a leg!" Whew I can not wait to hit this out of pocket maximum and start having everything paid for 100%!!! It's hard to pay all your normal monthly obligations and on top of that come up with $8,000.00 all within a 30 day time period. There are not payment plans for required prescription medications that you NEED to LIVE!
That being said we are blessed Eric is doing well and accepting his donors marrow and 100% grafted with his donors cells! We recognized the blessings and miracles the Lord continues to provide to us and we are grateful. We have experienced on many occasions tender mercies from the Lord that without him I do not know where we would be. I am so grateful for Eric's donor and for his selfless unconditional love and act of kindness to save Eric's life! I pray for him and his family everyday and know that without him we would not have Eric here today with us! What an amazing feeling it must be to know you saved a person's life and for nothing in return just out of unconditional love! There are amazing people in this world and it restores my faith and hope.
Eric's counts are pretty good a few things went down a little but that is to be expected all in all pretty good.. Eric's white cells are at 4.4 a little down from last time, red blood cells 4.33 with his Hemoglobin at 14.8. His platelets went down a little from 110 last time down to 102 but still hanging in there. His creatinine is good and his kidney functions and liver is at the levels they expect right now. We just got done with Chelsea being in the Bountiful 24th July parade for her Woods Cross High School cheer team, the kids returned from Youth Conference/Quest and loved it! Just signed Austin up again to start football - there goes our Saturdays right! It is good though back again as a family making the memories we so have missed over the last year! All in all things are good at the Barker home and we are continuing on this journey hopefully coming down the hill now and piecing back together our lives. We know that with the Lord and our continued faith all things are possible!
Saturday, July 17, 2010
Going Back to Work....
Well sorry for the delay the past few weeks not posting anything... We left off with Eric's friend passing away Patrick. Eric was not able to find a way to fly down for the funeral but he thought about him alot during the past few days and weeks. I know that Patrick is not suffering anymore and he is in a better place...it's just hard for us, the ones he leaves behind. We love you Patrick and the bond you and Eric share is eternal!
The past week our home has been really quiet. The kids both went on Youth Conference/ Quest with the Ward/Stake. We had to make them tribal wear for them to wear everyday up there, that was fun! A big thank you to my Mom who sewed them for us at the family BBQ!! We couldn't have made them without her, she gave Eric a class 101 on sewing it was fun to watch! The kids both got home last night and they said they loved it!! Chelsea and Austin both told us about how they re-enacted parts from the Book Of Mormon and at the end Pres. Terry was Christ in the second coming dressed in white, asking the leaders and them to " Come Follow Me" and how emotional/ spiritual that was, they said everyone was crying! They loved the "Faith Walk" -they had to be blind folded for it, the "Hold to the Iron Rod" trial where they were tested and tempted and how neat and fun that was! I am so glad they both went and had this amazing experience, it was a opportunity both Eric and I did not want them to miss! Chelsea had to adjust her work schedule, trade shifts, give shifts away- I told her she would be blessed for doing that in many ways. I missed them and I am so happy to have them HOME!!
Eric is going back to work Monday .....I have to admit I think it is to soon and I am extremely worried! He doesn't know the meaning of pace yourself, slowly go back or part time like the doctors have told him. He just goes...I know he wants so bad to get back to work though. He wants normalcy, he wants to be back at the job he loves, surrounded by all his law enforcements friends/buddies. He has missed it, I am thankful he loves his job so much and its a happy place for him not a burden I just wish he was not going back for a while longer so he could get stronger and more out from his transplant and recovery. I am a typical worrier so I am a bit over bearing but after you watch your husband go to deaths door and climb back and have a second chance at life you get a little protective! He went golfing this morning with some ward friends/ buddies Tori Hinkle and Paul Clements. I know he is enjoying himself and having a chance to start to piece back his life and normal things. I am so thankful to the Lord for all our blessings, for Eric being were he is right now and having another chance at life.
I am so thankful for Eric's donor and saving his life! When we went to the doctors the other day Eric's counts are pretty good. His white cells are 4.5, his red blood cells are 4.55 and hemoglobin 15.7 with this platelets at 110 ( they went down a little but still good). All in all things are doing ok and we are slowly moving along. We are blessed and thankful for all the Lord has given us and know with him all things are possible!
The past week our home has been really quiet. The kids both went on Youth Conference/ Quest with the Ward/Stake. We had to make them tribal wear for them to wear everyday up there, that was fun! A big thank you to my Mom who sewed them for us at the family BBQ!! We couldn't have made them without her, she gave Eric a class 101 on sewing it was fun to watch! The kids both got home last night and they said they loved it!! Chelsea and Austin both told us about how they re-enacted parts from the Book Of Mormon and at the end Pres. Terry was Christ in the second coming dressed in white, asking the leaders and them to " Come Follow Me" and how emotional/ spiritual that was, they said everyone was crying! They loved the "Faith Walk" -they had to be blind folded for it, the "Hold to the Iron Rod" trial where they were tested and tempted and how neat and fun that was! I am so glad they both went and had this amazing experience, it was a opportunity both Eric and I did not want them to miss! Chelsea had to adjust her work schedule, trade shifts, give shifts away- I told her she would be blessed for doing that in many ways. I missed them and I am so happy to have them HOME!!
Eric is going back to work Monday .....I have to admit I think it is to soon and I am extremely worried! He doesn't know the meaning of pace yourself, slowly go back or part time like the doctors have told him. He just goes...I know he wants so bad to get back to work though. He wants normalcy, he wants to be back at the job he loves, surrounded by all his law enforcements friends/buddies. He has missed it, I am thankful he loves his job so much and its a happy place for him not a burden I just wish he was not going back for a while longer so he could get stronger and more out from his transplant and recovery. I am a typical worrier so I am a bit over bearing but after you watch your husband go to deaths door and climb back and have a second chance at life you get a little protective! He went golfing this morning with some ward friends/ buddies Tori Hinkle and Paul Clements. I know he is enjoying himself and having a chance to start to piece back his life and normal things. I am so thankful to the Lord for all our blessings, for Eric being were he is right now and having another chance at life.
I am so thankful for Eric's donor and saving his life! When we went to the doctors the other day Eric's counts are pretty good. His white cells are 4.5, his red blood cells are 4.55 and hemoglobin 15.7 with this platelets at 110 ( they went down a little but still good). All in all things are doing ok and we are slowly moving along. We are blessed and thankful for all the Lord has given us and know with him all things are possible!
Wednesday, June 30, 2010
Bitter Sweet Update...
It is a very bitter sweet update...First I want to let everyone know thank you for the prayers and love, support for Eric. We received a phone call last night from Eric's doctors that the liver tests results came back and his levels/ enzymes on one part had dropped back down to almost normal range but the other part of the tests they were a little elevated but not bad - they had went down from the last weeks results which is good they said. They do not feel he has Graft Vs Host in his liver...what a blessing!!! We are thankful to the Lord for yet another blessing, they said however they think the reason his liver levels went up like that is due to all the 100's of blood transfusions Eric had to have to stay alive he has now 3 times the toxic amount of Iron in his body/blood. This is a common problem that if left untreated can cause long term damage to your major organs and cause heart failure or liver failure. So that being said we are meeting next week to talk to his doctors on what we need to start to do to prevent this and not have on going problems.
It's very hard today cause just as you feel a brief sigh of relief and thankful we got some very sad and devastating news this morning. Eric's friend whom has the same cancer as Eric that I have mentioned before on the blog, Patrick Chong sadly has lost his 3 year battle with his cancer and passed away with his mother and family by his side. This has been very hard news on Eric and he hasn't stopped crying today since he found out. Our hearts are broken and we miss him already but we know he is not suffering anymore and in a better place. His Mom Janice was talking to us on the phone today and she mentioned how much Patrick and Eric bonded in the hospital while they were going through their transplants together, how much they loved and cared for each other and how much Patrick thought of their friendship. He told his mom Last week right before he went into his coma that he didn't want his mom to call and tell Eric he was not doing good again cause he was worried how Eric would take it and didn't want to make Eric upset and stress, he didn't want any bad news to affect Eric and his recovery. That was how Patrick was always caring about Eric and what an amazing bond and friendship they shared.
Patrick and Eric shared the some wonderful sense of humor which is one of the many reasons why I think they bonded so well. Eric and him always said who would have thought that we would meet under these circumstances, while we are both going through the worst time in our lives and fighting for them. They had a very strong and unique bond that was amazing and beautiful to watch. Eric and Patrick could make each other laugh even when some days it seemed there was nothing to possibly laugh about. They would walk those hospital floor and halls together with their IV poles and if you watched them they would be laughing and talking just like any good two friends would enjoying each others company almost as if they were not even in the hospital at all.. as if they were in another place. Our hearts are heavy and we want Patrick's Mom Janice to know how much he loved her and appreciated her. She was always there by his side, taking care of him and loving him- he was very blessed to have her and I know he loves her so much and appreciated all she did for him as he shared with us on many occasions.
Eric is having a hard time, the funeral is Saturday and we are scrambling trying to see if we can some how get a flight or buddy pass to get to his funeral on short notice. Eric really wants to go it's important to him. I am very worried about him, he really is taking it so hard - I pray the Lord will comfort him and Patrick's family during this time.I am posting a picture of Eric and Patrick together...this is the one we took on the last day before Eric was coming home to Utah. We will forever in our hearts Patrick cherish our time we shared and our friendship and know that you are in a better place now, not suffering anymore, no more chemo, no more hospitals, no more blood transfusions, no more tests and experiments...you are home! I am posting a link to Patrick's obituary and guest book http://www.newcomerorlando.com/ we will see you on the other side my friend...until we meet again!
Friday, June 25, 2010
Please join us in a FAST FOR ERIC....
I know I posted the other day that everything is good ....so we thought. We received a phone call last night at 6pm from Eric's Dr. Chandramouli that they are worried Eric has Graft Vs Host in his Liver due to one of the test they do regularly each week when we go in came back with Eric's liver enzymes high. They were fine on all the weeks prior tests so they feel that this might be due to what we worried about as you decrease some of these Immune Suppression and GVHD drugs the risk is very high for Graft Vs Host. His doctor said that he wanted to prepare us that in the Liver is not good and he is extremely concerned. So much so he and Eric's transplant Doctors in Texas spent over an hour on the phone discussing what they should do.
They are having us go in Tuesday morning to repeat the same blood work and liver test and if it still shows his enzymes high or higher he will go into the hospital for a Liver Biopsy. We are very sadden by this recent news and worried and we pray that this will turn out that it is not Graft Vs Host. Immediately they have placed Eric's anti rejection meds and GVHD back to the higher older dosage and told us not to tapper anymore meds down. We ask if any of you could please join us Sunday we are doing a fast asking that the doctors will be guided and that the results will turn our good and not Graft Vs Host. We also welcome any prayers as we know all of your prayers with ours have always helped and comforted Eric in the past. Thank you for your continued support and we are sorry about this roller coaster we are taking you guys on with us as you can see each day, each moment this cancer life can bring more trials and changes. We know the Lord is mindful of Eric and his health and we pray for continued strength for his body to fight his cancer, for his positive attitude to continue and his fears to be lifted.
They are having us go in Tuesday morning to repeat the same blood work and liver test and if it still shows his enzymes high or higher he will go into the hospital for a Liver Biopsy. We are very sadden by this recent news and worried and we pray that this will turn out that it is not Graft Vs Host. Immediately they have placed Eric's anti rejection meds and GVHD back to the higher older dosage and told us not to tapper anymore meds down. We ask if any of you could please join us Sunday we are doing a fast asking that the doctors will be guided and that the results will turn our good and not Graft Vs Host. We also welcome any prayers as we know all of your prayers with ours have always helped and comforted Eric in the past. Thank you for your continued support and we are sorry about this roller coaster we are taking you guys on with us as you can see each day, each moment this cancer life can bring more trials and changes. We know the Lord is mindful of Eric and his health and we pray for continued strength for his body to fight his cancer, for his positive attitude to continue and his fears to be lifted.
Wednesday, June 23, 2010
Results are in....
Sorry for the delay everyone it took them a little longer to get all the final results in and call us from his doctors in Texas at MD Anderson Cancer Center.. but they are in and they are good!! Eric's bone marrow results still show no signs of cancer and no abnormalities in his cells and his genetics show he is still 100% grafted with his donors cells! YESSSSSS!!!!!! We are so grateful to his donor and the Lord for this wonderful blessing! It has been a hard road and we still continue down this journey and know we will for years but we are glad to be where we are however mindful daily of how quickly things can change.
As many of you know from my last post Eric's good friend whom we meet in the hospital down at MD Anderson Cancer Center Patrick who has the same cancer as Eric MDS Myleodisplastia from Florida has relapsed and rejected his transplant and not doing well at all- his cancer has now turned into a secondary cancer Accute Lukemia. We got a phone call from his mom Thursday that he has been moved into ICU and has pneumonia and been placed on oxygen like what happened to Eric during his transplant. He has been graded like Eric was a level 4 and the next level 5 is death they told his mom to get all his brothers ans sisters and family flown in to say their goodbyes and to call their priest which they did. Eric has been devastated! He has been so upset by the news he just keeps saying why, why can't Patrick be blessed and be doing good he is such a great guy. I think it has really scared Eric especially with the recent reducing Eric's GVHD (Graft Vs Host) medications and the risks we are facing right now he said to me " That could be me in a few weeks you know, I could be doing good and then all the sudden back in the hospital" It is scary for me and the kids but of course more for Eric he is the one that has had to fight so hard to stay alive, to come from the brinks of death and climb back to life- every day knowing that tomorrow is not promised and hoping for it all at the same time.
Eric is a very brave and amazing man, I have learned so much from him about love, courage, faith, strength and the appreciation for every moment. He is truly my HERO and I am so blessed to be his eternal companion. That being said as strong as he is I can see the fear and discouragement in his eyes, he doesn't have to say it - you look at him and see it there. He was saying to me the other day how sorry he is that the kids and I have had to deal with his cancer life and the stress, worry and hardship it has brought to us but I told him I wouldn't trade a second of it for anything! I mean that it has been hard but the Lord has carried us through and I know no matter what he will always continue to carry us. For that I am grateful and I feel a great sense of humbleness and gratitude.
The kids have been doing good...Austin has been busy with basketball camp, U of U Football camp which he has loved with Bradeon Godfrey teaching him (one of his idols), his baseball team has went to the Allstar Babe Ruth Tournament with nightly games and if they win tonight they continue on the the Championships!! We had to miss all this and we are trying to make up for lost time when we were gone for 5 months to Texas for Eric's transplant. Eric said to me the other day while we were watching Austin do a double play getting first base player and then the second baseman out all in the double play " Did you ever think that we would be here, right now again- I 'll be honest I had my doubts but I am glad I am here!" He is right we are so grateful! Chelsea has been busy with extra college classes she is taking on line, working, cheerleading and this week she has been gone to Girls Camp and I MISS HER SOOOO MUCH!!! She left Monday and she won't be home until Friday and its killing me! I know you would think that less laundry, no loud music, cleaning up after her and early cheer mornings I would be celebrating ( Eric says he is enjoying it) I would be happy but I miss her so much! It's so bad I found out that Heidi Finklea in our ward was going up to Girls Camp this morning and I ran a letter to Chelsea up to her and begged her to give it to Chelsea and give her a BIG HUG from me cause I MISS HER SO MUCH!
I know you would think a week would be no big deal right after having to leave them for 5 months for Eric's transplant in another state but I NEVER WANT TO HAVE TO LEAVE THEM AGAIN LIKE THAT! I hated being away from them. It was really hard for them and I really thought it would be Austin that would have had the hardest time but it was harder on Chelsea she said she hated and emotionally she has really struggled with that and still does. She said even though she knew we made a family decision that it was the best for Eric and his cancer to get this transplant and treatments down in Texas she felt abandoned, alone it was hard when everyone else had their Mom and Dad their for them in high school being a sophomore and everything new- she felt abandoned. For that I am so heartbroken and I will spend the rest of my life trying to make up for that to her. I always said it was the hardest thing I think I have ever had to do in my life, leave my children behind almost like I had left them/ abandon them and try to care and fight to save Eric's life.
As for Eric as I mention he is doing pretty good some days less energy and his memory short terms he struggles but the doctors say that is common post transplant and that some of that is also his medications. They say he will get better with all that over time. He is getting excited he convinced the doctors to let him go back to work ( suppose to be very little at first part time) Eric doesn't know the meaning of slow, little bit at a time ever since he has started to feel slightly better March on he has been talking about returning to work ( I think it to soon- the doctors have all told us usually a bone marrow transplant patient doesn't return to work until 2-3 years after the transplant - it hasn't even been a year yet! He was trying to go back to work around August but his work has been pressuring him to come back sooner, they wanted him back on 7/1/10 but he explained no way due to his doctors and them decreasing his medications right now and its so risky right now so I guess they settled for 7/19/10 he will return. I am not so sure about it and I think its to soon but what can I do he needs his job and medical insurance, he loves his job and wants to feel like he is providing again for us. Plus we start our lovely insurance fees and out of pocket again 7/1/10...his work goes from 7/1/09 to 6/30/10 and then the year starts over again on 7/1/10. So as of 7/1/10 we have to pay up front for his medications and medical bills the first $8,000.00 right away which will be within the first two weeks of July in his medications alone due to his prescriptions costs over $ 10,000.00 a month alone and so we will hit the $8,000.00 right away in the meds which is hard for us due to you can't do payments for pharmacies/ prescriptions...You pay the full price right then at the pharmacy or NO MEDICATION!
It's been a struggle but I continue to pray it will get better and we will be blessed because if there is one thing we have learned through all this - on paper this shouldn't have worked out, we should have lost everything by now and countless times we have continued to put our faith, trials and struggles to the Lord and he has always provided a way, a door opened, a miracle, another blessing. We feel alot of the times like maybe the Lord is getting sick of the blessings and miracles being handed to us but we continue to pray, be hopeful and grateful. Thank you to all of you whom have blessed us with your love, support, prayers, fasting on our behalf we know it has been from all of your prayers!!
As many of you know from my last post Eric's good friend whom we meet in the hospital down at MD Anderson Cancer Center Patrick who has the same cancer as Eric MDS Myleodisplastia from Florida has relapsed and rejected his transplant and not doing well at all- his cancer has now turned into a secondary cancer Accute Lukemia. We got a phone call from his mom Thursday that he has been moved into ICU and has pneumonia and been placed on oxygen like what happened to Eric during his transplant. He has been graded like Eric was a level 4 and the next level 5 is death they told his mom to get all his brothers ans sisters and family flown in to say their goodbyes and to call their priest which they did. Eric has been devastated! He has been so upset by the news he just keeps saying why, why can't Patrick be blessed and be doing good he is such a great guy. I think it has really scared Eric especially with the recent reducing Eric's GVHD (Graft Vs Host) medications and the risks we are facing right now he said to me " That could be me in a few weeks you know, I could be doing good and then all the sudden back in the hospital" It is scary for me and the kids but of course more for Eric he is the one that has had to fight so hard to stay alive, to come from the brinks of death and climb back to life- every day knowing that tomorrow is not promised and hoping for it all at the same time.
Eric is a very brave and amazing man, I have learned so much from him about love, courage, faith, strength and the appreciation for every moment. He is truly my HERO and I am so blessed to be his eternal companion. That being said as strong as he is I can see the fear and discouragement in his eyes, he doesn't have to say it - you look at him and see it there. He was saying to me the other day how sorry he is that the kids and I have had to deal with his cancer life and the stress, worry and hardship it has brought to us but I told him I wouldn't trade a second of it for anything! I mean that it has been hard but the Lord has carried us through and I know no matter what he will always continue to carry us. For that I am grateful and I feel a great sense of humbleness and gratitude.
The kids have been doing good...Austin has been busy with basketball camp, U of U Football camp which he has loved with Bradeon Godfrey teaching him (one of his idols), his baseball team has went to the Allstar Babe Ruth Tournament with nightly games and if they win tonight they continue on the the Championships!! We had to miss all this and we are trying to make up for lost time when we were gone for 5 months to Texas for Eric's transplant. Eric said to me the other day while we were watching Austin do a double play getting first base player and then the second baseman out all in the double play " Did you ever think that we would be here, right now again- I 'll be honest I had my doubts but I am glad I am here!" He is right we are so grateful! Chelsea has been busy with extra college classes she is taking on line, working, cheerleading and this week she has been gone to Girls Camp and I MISS HER SOOOO MUCH!!! She left Monday and she won't be home until Friday and its killing me! I know you would think that less laundry, no loud music, cleaning up after her and early cheer mornings I would be celebrating ( Eric says he is enjoying it) I would be happy but I miss her so much! It's so bad I found out that Heidi Finklea in our ward was going up to Girls Camp this morning and I ran a letter to Chelsea up to her and begged her to give it to Chelsea and give her a BIG HUG from me cause I MISS HER SO MUCH!
I know you would think a week would be no big deal right after having to leave them for 5 months for Eric's transplant in another state but I NEVER WANT TO HAVE TO LEAVE THEM AGAIN LIKE THAT! I hated being away from them. It was really hard for them and I really thought it would be Austin that would have had the hardest time but it was harder on Chelsea she said she hated and emotionally she has really struggled with that and still does. She said even though she knew we made a family decision that it was the best for Eric and his cancer to get this transplant and treatments down in Texas she felt abandoned, alone it was hard when everyone else had their Mom and Dad their for them in high school being a sophomore and everything new- she felt abandoned. For that I am so heartbroken and I will spend the rest of my life trying to make up for that to her. I always said it was the hardest thing I think I have ever had to do in my life, leave my children behind almost like I had left them/ abandon them and try to care and fight to save Eric's life.
As for Eric as I mention he is doing pretty good some days less energy and his memory short terms he struggles but the doctors say that is common post transplant and that some of that is also his medications. They say he will get better with all that over time. He is getting excited he convinced the doctors to let him go back to work ( suppose to be very little at first part time) Eric doesn't know the meaning of slow, little bit at a time ever since he has started to feel slightly better March on he has been talking about returning to work ( I think it to soon- the doctors have all told us usually a bone marrow transplant patient doesn't return to work until 2-3 years after the transplant - it hasn't even been a year yet! He was trying to go back to work around August but his work has been pressuring him to come back sooner, they wanted him back on 7/1/10 but he explained no way due to his doctors and them decreasing his medications right now and its so risky right now so I guess they settled for 7/19/10 he will return. I am not so sure about it and I think its to soon but what can I do he needs his job and medical insurance, he loves his job and wants to feel like he is providing again for us. Plus we start our lovely insurance fees and out of pocket again 7/1/10...his work goes from 7/1/09 to 6/30/10 and then the year starts over again on 7/1/10. So as of 7/1/10 we have to pay up front for his medications and medical bills the first $8,000.00 right away which will be within the first two weeks of July in his medications alone due to his prescriptions costs over $ 10,000.00 a month alone and so we will hit the $8,000.00 right away in the meds which is hard for us due to you can't do payments for pharmacies/ prescriptions...You pay the full price right then at the pharmacy or NO MEDICATION!
It's been a struggle but I continue to pray it will get better and we will be blessed because if there is one thing we have learned through all this - on paper this shouldn't have worked out, we should have lost everything by now and countless times we have continued to put our faith, trials and struggles to the Lord and he has always provided a way, a door opened, a miracle, another blessing. We feel alot of the times like maybe the Lord is getting sick of the blessings and miracles being handed to us but we continue to pray, be hopeful and grateful. Thank you to all of you whom have blessed us with your love, support, prayers, fasting on our behalf we know it has been from all of your prayers!!
Saturday, June 12, 2010
Back Again from Texas...
Well we made it back from Texas / Eric's doctor appt's at MD Anderson Cancer Center. We had a short trip 3 days there and back to get back in time for the kids last day of school. It went well as most of you know we will not have all the final tests results back for 2 weeks so we will see then but his doctors were shocked how skinny again Eric is and more weight he had lost. Since we were there 3 months ago in March Eric has lost another 10 pounds! The doctors came in and the that was their first comment and concern, they asked if he is trying to eat extra healthly he replied " A little I guess but I am now eating 3 meals a day- better than I have been eating in months." They told us they don't want him to lose anymore weight so they suggested if we have to eat high fatty foods....I really don't know why he keeps losing weight since he has been dong alot better the last 3 months on eating.
His blood counts are holding pretty good his white cells are 4.00, Hemoglobin 13.4 and Red Cells are ok at 3.64 and then DRUM ROLL>>>>>>>>>>>>>His platelets for the first time in 7 years are over 100 he is at 105!!! YESSSSS!!!!! Way below normal and still critical but we are happy to see them go above 100. His levels are looking for his kidney function and his creatine and tacrolimus level is holding ok at 4.0. All in all we are happy but we are nervous... As we thought his doctors would they warned us that they are going to just start lowering slowly 2 of the 32 anti rejection/ immune suppressed medications he is taking to prevent GVHD ( Graft Vs Host Disease)- they reminded us this is the second most scary time after his transplant that they had prepared us for. They said that he has a 50% chance of rejecting his transplant and getting GVHD so we need to watch him extremely close. They warned us again about all the signs and the restrictions we need to be so careful of. I get so nervous for this and I am so scared we know a few people that did reject and get GVHD one passed away quickly and the other is declining but still holding on and they try to fight it. We are hopeful and we pray for the Lord to continue to bless Eric and help his body to fight!
We have had an emotional few weeks and hard reminders of the reality of cancer. We have had several loved ones pass away from their cancer and it has been hard for us to be reminded of the day to day risks and what we are up against. We know all things are in the Lords hands and we pray for continued faith. Eric good friend we meet during his transplant named Patrick whom has Eric's same rare cancer MDS/ Myleodisplastia recently has rejected his transplant and was told that his MDS has now rapidly turned into AML/ Lukemia he has had to immediately start to undergo more chemo and is very sick. We pray for him and his family and know that the Lord will watch over him. We realize each day what a battle this cancer is and know that the road is long and hard. We are so grateful for Eric's donor and think of how lucky we are and blessed that he donated to Eric and saved his life! We will always and forever be grateful to him- still can not wait to meet him! We ask that if any of you could please find it in your hearts to pray for Patrick right now he needs our prayers and we want him to feel our love and support around him as well as the continued prayers for all the sick that they may be comforted in their time of need.
I am so grateful to the Lord for all the blessings he has bestowed on us and know with him all things are possible! We will keep everyone posted as soon as we get Eric's final test results in the next week or so.
His blood counts are holding pretty good his white cells are 4.00, Hemoglobin 13.4 and Red Cells are ok at 3.64 and then DRUM ROLL>>>>>>>>>>>>>His platelets for the first time in 7 years are over 100 he is at 105!!! YESSSSS!!!!! Way below normal and still critical but we are happy to see them go above 100. His levels are looking for his kidney function and his creatine and tacrolimus level is holding ok at 4.0. All in all we are happy but we are nervous... As we thought his doctors would they warned us that they are going to just start lowering slowly 2 of the 32 anti rejection/ immune suppressed medications he is taking to prevent GVHD ( Graft Vs Host Disease)- they reminded us this is the second most scary time after his transplant that they had prepared us for. They said that he has a 50% chance of rejecting his transplant and getting GVHD so we need to watch him extremely close. They warned us again about all the signs and the restrictions we need to be so careful of. I get so nervous for this and I am so scared we know a few people that did reject and get GVHD one passed away quickly and the other is declining but still holding on and they try to fight it. We are hopeful and we pray for the Lord to continue to bless Eric and help his body to fight!
We have had an emotional few weeks and hard reminders of the reality of cancer. We have had several loved ones pass away from their cancer and it has been hard for us to be reminded of the day to day risks and what we are up against. We know all things are in the Lords hands and we pray for continued faith. Eric good friend we meet during his transplant named Patrick whom has Eric's same rare cancer MDS/ Myleodisplastia recently has rejected his transplant and was told that his MDS has now rapidly turned into AML/ Lukemia he has had to immediately start to undergo more chemo and is very sick. We pray for him and his family and know that the Lord will watch over him. We realize each day what a battle this cancer is and know that the road is long and hard. We are so grateful for Eric's donor and think of how lucky we are and blessed that he donated to Eric and saved his life! We will always and forever be grateful to him- still can not wait to meet him! We ask that if any of you could please find it in your hearts to pray for Patrick right now he needs our prayers and we want him to feel our love and support around him as well as the continued prayers for all the sick that they may be comforted in their time of need.
I am so grateful to the Lord for all the blessings he has bestowed on us and know with him all things are possible! We will keep everyone posted as soon as we get Eric's final test results in the next week or so.
Subscribe to:
Posts (Atom)
