Well, I said last week that I was going to try to keep up with this blog, and I've already let almost a week go by since I last posted.  There are reasons for that, or maybe excuses, but before we get to those let me tell you right now before you read any further, if you have not read Whitney Hardee Cox's blog yet, go there RIGHT NOW!  She has such a testimony and awesome faith to share that you will be SO BLESSED!  That girl and her family is AWESOME and there is NO doubt that God is working in her life. The URL is http://whitneycox.thislittlelightofmine.net/. Our family BELIEVES that God is healing her NOW!

     Now back to our journey with cancer, and I say "our" because Thomas and I could not make it through without a host of friends and family that support us in more wonderfully awesome ways than you could even imagine.  Since March is Multiple Myeloma Awareness month, I wanted to tell you a little about MM. Now this is what I "think" I have learned over the last 5+ years, but don't quote me!  I definitely don't have a medical mind. 

Multiple myeloma is a blood cancer that forms in a type of white blood cell called a plasma cell. Plasma cells help you fight infections by making antibodies that recognize and attack germs.

Multiple myeloma causes cancer cells to accumulate in the bone marrow, where they crowd out healthy blood cells. Rather than produce helpful antibodies, the cancer cells produce abnormal proteins that can cause sometimes serious problems.

What triggers plasma cells to become malignant in multiple myeloma is not known. The cancerous myeloma plasma cells proliferate and crowd out normal plasma cells and can etch away areas of bones. These lesions may cause pain and even breaks or fractures of the bones so damaged. The proteins produced in large amounts can cause many of the symptoms of the disease by making the blood more thickened and depositing the proteins in organs that can interfere with the functions of the kidneys, nerves, and immune system.

You know what?  This has SO taxed my brain!  I am SO glad God called me to be a teacher and not a doctor!  I am going to try to be short on my prayer request for tonight.  Thomas is STILL running fever, so we are going in the morning to see our FAVORITE oncologist, and I mean that from the bottom of our hearts.  She is going to place a peripheral IV line so that I (yes, I said me!) can give him IV antibiotics 3 times a day for the next 14 days!  Hey, you all know I will do anything for Thomas and this is keeping him from a 14 day stay in the hospital.'  Hopefully, this will take care of whatever is causing these fevers that he hasn't been able to shake since December, and we can get back to his regular treatment plan.  Thank you for all of the prayers for Dr. Adams and all of the others who treat him, as well as all of us.  And please continue to pray for Caroline Keene, Dr. Adams' daughter who is battling cancer too, as well as Whitney and MANY others! 

 

 

It's Been a Long Time...

Well…here goes…I wrote on Facebook two or three nights ago that I was going to try to update and continue the blog that our daughter, Claire started when Thomas was first diagnosed with multiple myeloma in 2009.  In order to do that, I decided to read back over the 33 or so posts that Claire made starting four months after his diagnosis in November of 2009.  WOW!  I wasn’t prepared for the emotions that I was going to feel reading those precious heart-felt snap shots of our lives written by our precious child!  But by far, the most overwhelming response that I felt over and over and over was the pure awesomeness of our wonderful Lord and Savior.  He NEVER let us down, and I know He NEVER will, no matter what happens on this earth!

Claire wrote in her first entry that blogs were a lifesaver for her when her daddy was first diagnosed, and lately I have found the same to be true.  Not only do they help connect us with real people fighting this very real battle as Claire said, but they also give us HOPE. I have found that writing about what is going on is very therapeutic for me as I try to express our daily struggles, fears, successes, and disappointments, because as I write I am ALWAYS reminded that GOD has CONTROL of all of this and He LOVES US SO much that He gave His Son!  Hopefully, as I am reminded of this and write about it, I can give others hope too! I subscribe to a couple of Multiple Myeloma Support Groups online and plan to share this blog with them as well, so some of what I share may be of no interest whatsoever to you unless you are walking a similar journey!  A dear, dear friend reminded me on Facebook today that you can always skip what you don’t want to read or not read it at all! HOW true!  At first I thought I might sound rude saying that, but it is just true.  I just pray that someone will be helped or glean something that might be useful in whatever journey their lives are taking!

OK…now that all that’s said, I want to give a brief update on what has been going on recently in Thomas’s walk with MM.  Around the end of November, the decision was made for Thomas to stop the chemotherapy treatments that he had been taking for about a year.  There were several reasons for this, but I think the main one in our minds, or at least mine and the children’s, was just to give Thomas a break and let him feel really good for Christmas and the last part of his favorite season of all…HUNTING!  Well, he did have a couple of great weeks!  He loved being able to hunt and not have to worry about treatments and such.  But you know what y’all, we sometimes forget that Satan is just looking and waiting for his chance to jump in and try to wreak havoc in our lives and try to make us doubt God.  Thomas began to have low back pain and shooting pains down his legs that progressively got worse and worse until he finally conceded that he needed to see Dr. Adams sooner rather than later in the hunting season. (I just want to stop here for a minute and say that everyone has their own personal heroes, and we all choose differently, but Dr. Betsy Adams ranks at the very top of our list!  She is Thomas’s oncologist, but our family’s anchor as we fight this battle with him.  She is brilliant in her field, and is always consulting with specialists all over and looking for what is the very best for her patients, even if she needs to send them elsewhere for treatment.  But that is not the best thing about her…she is SO kind and compassionate, but even more than that, she knows that we all need God to guide us and we can feel His presence with her as she treats Thomas.) While Thomas was taking a break from chemo, a tumor or mass of myeloma cells formed at the base of his spine and was causing him lots of pain and trouble walking and it got to where he couldn’t lie down in the bed.  He began radiation treatments to dissolve or break up the tumor, but just when things started getting better, he developed pneumonia in both lungs and had to be hospitalized a week or so before Christmas.  For those with MM reading this, he says pneumonia was MUCH worse than either stem cell transplant, so if you a facing a SCT, take heart...Thomas has had two, and he really never complained when he was hospitalized those two times.  Once he was released from the hospital and started back on radiation for his back, he realized that he had not only broken a small bone in his right forearm, but also his clavicle on the same side…that’s a story for another day though.  THEN he continued to run a low grade fever that slowly and progressively got higher and higher. He was admitted to the hospital, had all kinds of tests done and nothing proved conclusive; fever stopped.  SO he went as out-patient and had his medi-port removed since doctors thought that might be the source of the fever.  Came home for ONE day and began running fever AGAIN!!! Hospitalized Saturday with fever and a determined Dr. Adams to find out once and for all and for sure that he fever was coming from the port.  Turns out it was!  He stayed in the hospital through Tuesday and we came home with ME being the nurse!  I actually JUST gave him his last dosage of antibiotic and removed the IV line!  GO me! (Obviously, I have been writing this post for several days!) SO we are scheduled to have a port reinserted at 6:30 Monday morning and then meet with Dr. Adams Tuesday to hopefully resume chemotherapy! 

I am telling you all of this as I said for many reasons…common information for other going through treatment, to update friends and family, therapy for me, but MOSTLY to give PRAISE and honor to our Lord!  Even through the scary times in our physical lives (and we all have them), HE proves over and over that this too shall pass and we will all come out so much for the better on the other side!  Gonna stop now, but will post again later! Can’t wait to tell you about the broken clavicle!  Much love and prayers for all who read!

Update

     I might be the worst updater (if that is even a word) ever!  I think the third child has sent me to an entirely new level of busyness :)  Anyway, Daddy is doing great!!  He got out of the hospital on Wednesday.  They were originally going to stay in a hotel when he got out but God had other plans.  There is a WONDERFUL place right across from Hollings Cancer Center called Hope Lodge.  It is kind of like the Ronald McDonald House but for adults with cancer.  They had told us it was a very long waiting list and don't expect to get in.  However, they came to Momma last Monday and told her they got a call that they could come stay there.  So, because they were going there, they let Daddy out of the hospital on Wednesday.
    He has to go back to Hollings first thing every morning to have blood drawn and labs done.  He had to have potassium Thursday but has had to have NO transfusions since then.  If he can hold until Wednesday with no blood transfusions, he will get to come home!!!  I was going to take my children to see them today and they surprised me by saying they thought they would ride home for the afternoon.  They really aren't supposed to be that far away from the hospital but since he had labs done and all was well this morning, we decided it was safe to sneak away :)  Can I tell you how excited we all were for their visit?  Aunt Mary fixed lunch and it was nice to get to spend time together outside of the hospital.
    Daddy's doctor commented to the nurse practitioner this week that Daddy was the invincible man.  He was telling her how well he gets along.  There is NO doubt at all that God is with him.  He doesn't always follow the rules like he should but God continues to plant a hedge around him and keep him infection free and for that we are so thankful!   
     Speaking of things to be thankful for, I cannot say enough what a blessing Hope Lodge  is!  First of all, it is SO nice.  It is like a bed and breakfast.  There are 17 suites for patients and their caregivers. It has a large dining area with a separate area for neutropenic patients like Daddy (people who have little or no immune system).  It has 3 big kitchens where you can cook and one is reserved for neutropenic patients.  There are refrigerators and cabinets where each suite has its own shelf.  Several nights a week different people, organizations, or businesses bring in dinner.  It is just a nice, nice place where you get the chance to spend time with people who understand what you are going through and feels a little more like home.  After being in the hospital for 15 days, they are thankful not to be stuck in a hotel with no one to talk to and visit with.  Also, it gives Momma peace of mind that there are others around in case she needs them especially after the little episode last Friday.  I have to say that just to think that people care enough to donate their time and money to provide this for cancer patients is overwhelming.  I can't say enough nice things about it and thank the Lord for blessing Momma and Daddy with this.  Daddy kept saying he felt like he hit the lottery :)  Joey and Deanne were able to take Rivers to see them Friday so that made the weekend even better.  
    Although Daddy continues to battle the hives, we are very thankful for how well he is doing.  We try very hard not to take this for granted.  Please continue to pray that he stays infection free and that he gets his appetite back.  If you see him around and he doesn't shake your hand or hug you, please don't be offended.  He has got to be very careful especially this time of year.  Like I said earlier, he doesn't follow those rules very well so maybe if you all could just remember to love him from a distance, it would be better :)  He gets really aggravated with me and Momma because we are like hand washing, mask wearing, germ preventing police.  But, somebody has to be! 
     Just want you to know your love and support means so much to all of us.  When we get weary, someone is always there to lift us up and we are grateful.  God is good and we have so much to thank Him for!
~much love to you all!

New day and a new "do"

     Quick update...Thank the Lord Daddy hasn't had anymore passing out episodes.  He continues to be very weak and had to have a transfusion last night and was getting ready to get one tonight when I talked to them.  His fever is still up and the hives are still around. But, the nurse said that maybe tomorrow things would begin looking up.  We are believing this!  Joey, Deanne, and Rivers visited today and said Daddy looked pretty good.  I know he would've felt better if the nurse would've let him go see that sweet baby but he can't go out of the unit with a fever so Nonnie got to love on him instead.
     We had a special prayer for Daddy today in church and the peace that I have felt since then has been amazing.  Momma has been so positive every time I talked to her today and I know the Lord is giving that to her as well.  So, in between scratching those hives...Momma gave Daddy a new "do" :) 

     His hair began falling out this morning so they decided to go ahead and give him a Mr. Clean cut :)  Doesn't he look happy!  Thank the Lord that brighter days are ahead.  Days filled enjoying Daddy's healing and being back home again.  We sang a song today in church, "I Just Feel Like Something Good is About to Happen..."  That's how I feel tonight...something good is about to happen and I am ready!  Please continue to lift Daddy and Momma up.  Two weeks in a tiny room is not fun to say the least.  But, brighter days are ahead...thank God for them!
~Much love to you all

Thanksgiving Update-Day 7

     It seems like Daddy likes to be in the midst of a transplant on a holiday.  Last time it was Easter, this time Thanksgiving.  Just kidding!  We all know he would give anything not to be here.  But, we are thankful that this is an option and that healing is on its way!
     Kristen, Tanya, and I have a Black Friday shopping tradition.  So, we headed out a little early and brought dinner to Momma and Daddy.  Daddy looked pretty good and ate some sweet potatoes, ham, and banana pudding.  He said he's not sure what it tasted like but at least he ate it :)  
     Daddy had started running a fever Tuesday night.  They began him on very strong IV antibiotics yesterday as a precaution.  Yesterday afternoon, his fever got to 100.4 (it doesn't seem high to us but remember he has NO immune system so it is basically like an infant) so they ran blood work, did a urine culture, and a chest x-ray.  So far, nothing has shown up.  He has had a rough day today.  He passed out in the shower and the doctors aren't sure if it was simply passing out, a seizure, or what.  So, they did an EKG and have him on a heart monitor, and did more blood work.  I think he just wanted to see if Momma could handle it :)
     She did handle it, bless her heart.  She and Daddy claimed she was calm, although with Daddy passed out I'm not really sure how he knew :)  So, I asked the nurse to verify, and amazingly she said Momma was a lot calmer than her.  It had to be divine intervention.  I am not being factious.  Those of you who know Momma, know that this was peace that could only come from the Lord.  But, the poor man will never go to the bathroom alone again bless his heart :)
     Anyway, I am here with them now and Daddy is resting. He has the hives so they are trying to get that under control. I am so proud of Momma and how well she handled not only today, but everyday.  It is hard being the cheerleader, nurse, mean one who makes you do things you don't want to, and all kinds of other things.  But, she never complains.  
     Please lift both of them up tonight.  Pray that Daddy's counts will start rising and he will be fever free.  Please pray for no more of the episodes he had today.  God is so good and while this isn't where we would choose to spend Thanksgiving...it is all in God's plan and we praise Him for it.  
     We have so much to be thankful for.  We are together and that is blessing enough!  I was thinking today that we have had an eventful year in our family...2 new babies, 2 heart surgeries, and a transplant.  But, good or bad, God is always by our side.  He continues to give us peace that passes all understanding and we will continue to praise Him in this storm!   Thank you all for your prayers, calls, texts, and messages.  You will never know how much they mean.  Tomorrow will be a better day :)
~much love to you all!

Update

     I apologize for taking so long to update.  We have been so busy and this week is kind of a blur.  Daddy did well with the chemo Tuesday and Wednesday.  Joey and Deanne went to visit Wednesday and that thrilled Momma and Daddy.  And, Daniel and I took the children to see Nonnie and Poppie Wednesday night and you would have thought we hadn't seen them in a year.  My children are use to seeing them every day so this is very hard for all of us.  Daddy won't follow the rules though and hugs and kisses all over them.  He got very upset with me because I asked the nurse if he had to wear a mask and she made him.  He doesn't understand how dangerous any type of infection is for him right now.  Because his counts will bottom out this week and he has no immune system, we probably won't be taking them back.  Thursday was his day of rest but he had a bone marrow draw that he agreed to do to help with the clinical trial he is a part of.  It was optional but he wanted to do it to hopefully help with finding a cure for this awful disease.  He said it was just another day in paradise when I asked him how it went :)
    Thankfully, there are several familiar faces from last time still working in the unit.  Ashley, which Daddy affectionately dubbed "the mouth police," did his draw.  She comes by every morning at 6:30 and checks his mouth and he really likes her.  Friday was his "new birthday," as they refer to the transplant day.  It was uneventful which was a good thing. All Daddy talked about before he came was getting a room with a view.  He told the transplant coordinator to make sure he was on the other side of the hall so he could see the water because all he had to watch last time was construction.  Well, he ended up right back on the "bad" side of the hall.  But, on Friday, they unexpectedly moved him to the other side and he has a beautiful view of the harbor.  He was excited about this.  Today he was supposed to a drug that is new since the last transplant that will make his stem cells begin regenerating quicker.  Well, because he is inpatient, insurance denied payment.  So, it was up in the air as to whether he would get it because apparently it is VERY expensive.  But, God always makes a way.  Because he is a part of the clinical trial, they covered the shot. Praise the Lord.  This should help his immune system to come back sooner and prevent infection from occurring. 
    The children and I were in town last night because I had to take MC to the doctor.  It was heartbreaking to be that close and not be able to go see them.  At the time, we didn't know if what she has was contagious.  Thankfully, it isn't contagious, so I was able to go spend the day with them today.  They are very homesick and a little weary but we had a good day together.  Daddy can't taste anything but we did get him to eat a doughnut and five chicken nuggets. He said we could've fed him a napkin and told him it was a doughnut and he wouldn't have known the difference.  
     Bless his heart...he is such a good sport and so is Momma.  She doesn't complain about watching sports or westerns or whatever he wants to watch all day.  She hasn't left the hospital since Tuesday.  She is truly his rock and they are both  my heroes.  I am so thankful to have such Godly examples set before me and my children.  I know God has a plan in all of this and I choose to believe that His plan is to heal my Daddy.  That's what I am most thankful for in this Thanksgiving season.  Please continue to lift him up as this is typically the calm before the storm.  However, we have been praying and rebuking all of the things they have told us to expect.  Thanks for praying that with us.
~much love to you all!
PS...his room is now 5021 so the number would be 876-7521.

Admissions Day

     We just got back from MUSC.  Daddy got in his room about 5:00 this afternoon.  After his and Wilson's appointment this morning, we messed around Charleston waiting for them to call to say they had a room for him.  Well...finally Momma called them about 4:45.  Long story short, they had been calling their home number all day.  Great doctors...sometimes not so great communication.  Anyway, it worked out because really he would've just been sitting there not doing much all day anyway.  He is in room 5038 and his number is 876-7538 if you would like to give them a call or they have their cell phones as well.

     Tomorrow Daddy will begin chemo.  He will be taking the chemo he has been taking for the last few months.  This is the clinical trial phase of the transplant.  Normally, transplant patients are giving Melphalan alone.  He will be taking Carfilzomib along with the Melphalan to see if the two will be more effective together.  I know a lot of you don't care about all of this technical stuff but please remember that one day someone may be clamoring for information on Myeloma just like we were three short years ago, and I want to help them in any way possible.  Wednesday he will get the other chemo, Melphalan.  This is a massive dose and will kill his entire system pretty much.  

     With that in mind...some have asked can he have visitors?  Yes, he absolutely can and would love that I am sure.  BUT...he cannot have visitors who are sick or that have been around someone who is sick.  Even a common cold.  I am not trying to be rude but please keep in mind that Daddy, nor the other patients on the unit, will have an immune system.  Even a common cold can have a devastating effect on them.  But, if you are healthy, please feel free to go by and see them.  He also cannot have fresh flowers or fruit on the BMT unit.  

     He will have a day of rest Thursday and get the transplant on Friday.  This week will probably be okay and his numbers are expected to bottom out next Wednesday or Thursday.

     Daddy never complains and we were trying to tell his doctor that tonight.  They will ask how he is and he will say fine.  So, we were warning her.  He chimes in and says well I really didn't have pain last time I just felt like I was going to die but other than that I was fine.  Well....there you go!  That's Daddy!  He is so strong and handles things a lot better than we do.  Please lift him up and Momma too.  The caregiver has a lot of responsibility and she is understandably nervous and a little sad.  But, God is good and He provides all our needs so we are already praising Him for not just good, but GREAT results!

~much love to you all

PS Wilson had a great EKG and ECHO today and if his 24 hour monitor looks good we don't go back for 4 months...God is good!