How's Mom?

Many have been asking how Mom is doing. She is doing really well - better than the rest of us. Sometimes I am concerned that she is doing too well. My concern is that she is simply emotionally and physically relieved right now and the fact that she has lost her husband of 41 years will hit her really hard at some point. However, Mom has reminded us that she has been grieving this over the past year and a half as Dad's disease progressed. Mom and Dad handled a lot of things privately between the two of them. Mom was very open and honest with us kids about Dad's condition, but she also chose not to burden us with a lot of the day to day issues she had to deal with. Over time, Mom lost pieces of Dad as the disease progressed and Mom did grieve every one of those loses. Mom knew how very much Dad hated being sick. Mom and Dad had both come to terms with Dad's illness and were very much at peace with each other and at peace with God's plan. Of course, Mom misses Dad, but right now she is enjoying spending time with the grandkids, getting out with friends, etc.

My Tribute

Dad -

You gave me wings. You let me fly. But, you always made sure I had a place to land.

Details

This is not a post I ever wanted to write. Everything is still very surreal at this point. However, I know it is a post I have to write.

Visitation for Dad will be on Thursday, Dec 10 from 4pm until 7pm at Starks & Menchinger in St. Joseph and also on Friday, Dec 11 from 11am until 1pm at Midway Baptist Church in Watervliet. The funeral will be Friday, Dec 11 at Midway at 1pm.

We as a family cannot say THANK YOU enough for all the love, encouragement, help and prayers that have been so generously given over the past year. We have been overwhelmed and so very blessed by the support of our friends and family.

Thanks Mom!

The gift of having this past year with our Dad was a gift to us from our Mom. The care she gave him is unbelievable! Day and night she was by his side and cared for his every need. She kept meticulous records and adjusted Dad's medications and IVs daily to keep everything balanced. Dad often apologized for all the work Mom was doing to care for him. But, she always gently reminded him that that is what she was called to do. She never complained. She always focused on the good and had a song in her heart. Thanks Mom! What a gift you gave us!

It is well

Our hearts are heavy, but our souls rejoice. At 6:30pm Dad went home to his Savior Jesus Christ. No more sickness, no more pain. We rejoice!

Tomorrow is now Today

Dad keeps hanging in there. His condition is very fragile. Last night he had a few episodes in a short period of time where he stopped breathing for over a minute. At that time, calls were made and all the family gathered with Dad. Well, that must have been what he was wanting because he settled right in, started breathing regularly again and rested peacefully all night. He seemed to enjoy the big sleepover. Mom slept well knowing she had everyone there with her. Dad has not had any fluids or nutrition in a while now. But, he is peaceful and has not had to have any medication. We keep saying how blessed we are that we are not having to watch him suffer. God's plan is good, His timing is perfect.

I think it is Sunday

The days and nights are becoming a blur. Dad has declined significantly over the last 48 hours. He is not able to communicate with us anymore. He still knows we are there though. It is very hard to see a frail old man laying in your parents' bed. I keep waiting for Dad to pull in the driveway after a weekend of fishing up north or to walk up from the barn for his lunch. It just breaks your heart. It will be well with my soul.

Day by Day

Isaiah 26:3 You will keep in perfect peace those whose minds are steadfast because they trust in you.

Not much has changed with Dad. He continues to be very weak. We have all been with Dad today. He responds to each of us, but is not able to stay awake very long. He knows we are with him and thanks us for being there. We are taking one day at a time and trusting Jesus with tomorrow. Our hearts ache seeing Dad like this, but it is well with our soul.

But he said to me...

"My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. 2 Cor. 12:9

Dad is very weak right now. He is not eating well and is having very high output. All of this is very discouraging to Dad. We are taking one day at a time and trusting in the all sufficient grace of Jesus Christ to give us power in our weakness. Please pray for comfort for Dad, peace as He trusts in the perfect plan of His Savior Jesus Christ. Our earthly desire is that Dad's strength and physical health will be restored. Our eternal desire is that God's perfect plan will be accomplished and that He is glorified in all that we are and all that we do. We trust His perfect love and are resting in the palm of His hand. While we continue to pray for Dad's healing, we are comforted in knowing that God's plan is good.

Thankful

We are all thankful for the past year. This time last year we did not think we would have Dad with us much longer. This past year has truly been a gift. It has been filled with ups and downs, but it is still a gift and we are mindful of that each and every day.

Mom and Dad have been able to get away for a few days up north. Dad is not able to get around much at all anymore, but he is enjoying seeing Mom be able to take a bit of a break and just get away. More updates and photos soon to follow.

Oh Deer!

This past week, cousin Brian (hunter extradinaire) gave a deer to Allen. So, on Saturday Dad and Al played butcher boy in the barn. Dad really overdid it, but he was determined to stay for the whole thing. And he loved every minute of it! But boy, did he crash when he made it back to the house. He didn't move off the couch for the rest of the day. We're all learning to let Dad do the things he enjoys even when we know he is overdoing it. If it is too much for him and he is wiped out for a few days, that is OK. At least he got to enjoy the moment. Trying to tell him he shouldn't do something is pretty useless anyways, so we might as well get some benefit out of seeing him enjoying himself.

Hands up in the air, all together now "Whhhheeeee...."

What a roller coaster of a ride it has been this week! Dad has just had a rough couple of weeks. We were all pretty much saying, "OK, God, it's all You now." I just picture God responding "well, it's about time you got out of my way! I can handle this so much better than you all!" And then the most humbling thought hit me - who are we to think that we can even get in God's way anyways! He is God - the King of the Universe! And He is very much in control of Dad's situation, just as He has always been. We're just a little forgetful sometimes!

Earlier this week, the Hospice nurse and Dr. determined that Dad was having some prostate issues. This has likely been a big contributor to the repeated urinary tract infections Dad has been suffering from. These infections combined with the chemo and the disease itself have just been about more than Dad's frail body can handle the last few weeks. The bit of good news out of this is that Dad is getting back enough of his feeling that he is now feeling pain and symptoms. So, we don't know how long this has been an issue since his peripheral nervous symptom has been greatly affected by the amyloidosis. He is on medication that should help to resolve some of these problems. And for the first time, Dad is having to take pain medication. The good news is that Dad's nervous system is showing signs of improvement. The bad news is that now Dad knows that he hurts.

The Dr. appointment went well on Thursday. Dad's blood work continues to look good. The Dr. has decided to increase the time between the chemo treatments. So, instead of every four weeks, they will now be every six weeks. Hopefully this extra time will give Dad's body a chance to recover and build some strength between treatments. Mom and Dad also got the doctor's approval to spend a week up north. Traveling with Dad is a lot of work! But, Mom and Dad both need a bit of a break, so I'm glad they are able to get away.

Thanks for your prayers!

Time for a change?

Dad is scheduled to see his doctor on Thursday. The doctor will review his recent blood tests and check his overall progress. At this time, it seems as if Dad has reached a lower plateau. He is still pretty weak, but stable. In the past, he would have a few down days and would rest up and regain his strength. But right now, he is just not bouncing back. On Thursday, Mom and Dad are going to ask the doctor if Dad's body needs a break from the chemo. He has been on chemo since August of 2008 and over time it does take a toll on your body. His test results continue to show a decrease in the amyloid levels. However, he is continuing to get weaker and there has been a general decline in his functional abilities. At this point, we are questioning if his current weakness is a product of the disease or the treatment.

Please pray for this doctors appointment as some difficult decisions may need to be made.

When you're up, you're up.....

and when you're down, you're down.

And Dad is pretty down right now. He had a pretty down week last week and I was hoping he would have a better week this week so I could have positive things to post. But, that just isn't the case right now. So, if you could keep Dad in your prayers, he and Mom would certainly appreciate it (as would the rest of us too!). Dad has been pretty weak and when he isn't doing as well physically as he would like to, he gets very discouraged. His blood pressure is very low and the IVs don't seem to be helping that much. We know HIS strength is made perfect in our weakness and we are all praying that Dad will very much be surrounded by HIS strength right now.

All the older grandkids have been sick, so we haven't been able to visit with Dad due to the risk of passing something on to him. He is just not strong enough to handle that right now. So, we're hoping to get everyone healthy so Dad can visit with the grandkids this weekend. If anything, that gives him a little encouragement.

We appreciate all of you! Thanks so much for praying for Mom and Dad!

Introducing.....

Jackson Walter Sample

The Sample Family is doing very well! Nana and Papa are as proud as can be! Andi and Charlie are hoping to bring little Jack home tomorrow.

He's here!

Baby Sample arrived at 12:53am this morning. Andi checked in to the hospital Thursday morning at 6am for a scheduled induction. She was exactly one week overdue on Thursday. After nearly 2 days of little progress, the Dr. decided it was time to intervene and Baby Sample was delivered by c-section. Baby Sample is still without a name (geez, they had enough time sitting around the hospital to figure that out, ya think?!). He weighed 8lb. 2oz. and is an impressive 21 1/2 inches long. According to Nana he's the most amazing baby with a head of black hair and big feet and hands! Andi, Charlie and little Nameless will be taking it easy today and trying to rest. So, maybe tomorrow I'll be able to get some pictures for you! (and hopefully a name too)

Not Yet!

Many have been asking if we have any new baby news to share. Not yet! Andi and Charlie are expecting a baby boy any day now, but that little guy is quite cozy right where he is and has not made his arrival yet. But, you'll be one of the first to know when he does!

Dad has had a really good week. He has been feeling so good that he has had a hard time getting himself to settle down and take a nap. Last week he had four IVs so he should be feeling pretty good! That's all the news we have for now.

Fighting off another infection

Dad has a pesky urinary tract infection again. Over the last couple weeks, he has been feeling pretty tired. He would keep trying to get himself up and going, but just didn't quite have the energy to do it. He even fell again at home trying to walk. Thankfully, he wasn't hurt. Mom mentioned to the Hospice nurse that she should probably check him for a UTI and mom was right - he had another infection. Part of the problem is that he lays down so much and that makes him more prone to get infections. But, with his blood pressure issues, there really isn't much we can do about that. So, we definitely need to check for these infections more often. They sure do wipe Dad out. He is perking right up again though since he has been on his antibiotics. Dad should have another light chain test in the next week or so. That is the test that measures the amyloid levels in his body. It tells us if the chemo is still doing its job. So far, the past tests have showed a slow but steady decrease in the amyloid levels. We are hoping that trend continues.

Mom and Dad were able to go camping for Labor Day. So many things have changed drastically for Mom and Dad over the last year that it is nice when they can do some of the things they have enjoyed together for so many years. Camping was a much different experience for them this time. They were somewhat of a mobile medical facility, but they still enjoyed themselves.

Thanks for your continued prayers and encouragement!

August Birthdays

We have a lot of August birthdays in our family. First up is Dad - he turned 62 on August 12th. Next is grandson Nathanael - he turned 10 on August 14. Oldest granddaughter, CJ, turned 14 on the 24th and last but not least is Elana Grace - she will be 6 tomorrow, the 28th.

Here is the August birthday crew.
Dad is doing pretty well. He has not been to the hospital in months and only goes to the doctor for his regular appointments. Having Hospice has done so much to help stabilize him. He is able to go on little outings - church, out to eat, grandkid birthday parties, etc. But, he still has to pay very close attention to his body and know when enough is enough. When his blood pressure is low or his output is too high, he gets an IV. If he is worn out, he stays in and gets rested up. It does make it hard to plan since Mom and Dad don't really know what each day will bring. But, they have learned to roll with it and they do what they can when they can. And some things just have to be saved for another day.

We are grateful for the progress Dad has made. He is getting stronger little by little. Instead of his walker he often walks with two canes. He does not need to sleep nearly as much during the day as he used to. Thanks for your prayers and all the love and support you give to Mom and Dad.

Mom's Turn

Not wanting to feel left out, Mom got to take her own trip to the hospital today in the back of an ambulance. This morning, she had some type of an allergic reaction to medication that she took. Fortunately, she felt it coming on and was able to call and ask for help. She is now back home from the ER. She is pretty exhausted and is resting, but we definitely will need to be sure she follows up with her doctor. This is the 2nd reaction she has had within a couple of weeks.

Dad is also feeling a little wiped out. He finished chemo this past Saturday and the week following chemo can be a bit more challenging than normal. He usually has high output and needs to be very careful about checking his blood pressure and getting IVs when needed.

Summer Fun

Dad's condition remains relatively unchanged. Every day brings new challenges and surprises! Some good, some not so much so. Mom and Dad continue to take each day as it comes and celebrate the little victories and work through the challenges. Dad was able to enjoy a week at Gull Lake Ministries Family Camp last week. That was a goal he had set for himself and we are all very proud of the fact that he succeeded in achieving his goal! His test results have shown a slight decline in the amyloid levels, but not enough so to change his treatment. Dad has now been on chemo for a year. His doctor does not like to keep anyone on the same treatment plan for more than a year. However, in Dad's case, this is the treatment with the least complications and test results show that it is continuing to work. His body is still responding to the treatments. So, for now, his treatments will remain the same.

Got Milk?

Dad's bloodwork is showing that his vitamin D is low. The doctor is not sure why, but has prescribed a mega dose of Vitamin D once a week to try to boost his level back up to where it should be. Otherwise, Dad has had a pretty good week. He's been able to get out with friends a little, scoot around the yard, critique the garden, go to the shop and generally just putter around at some of the things he likes to do. Our new dilemma is that Dad is doing so well with the maintenance program Hospice has been able to provide that we are getting concerned that Hospice may kick us out! While it is good to be "too healthy" for Hospice, the bad thing is the improvement is Dad's health is a result of Hospice and stopping that could send us back to where we were - trying to manage the crashes, in and out of the hospital like a revolving door, etc. Please pray that the doctors, insurance company and whoever else will be able to work out the details of a continuing home maintenance program for Dad. It has really improved his physical and mental well-being.

Thanks for all your prayers and encouragement!

All in all, not a bad week

Dad has done quite well this week. He is walking more (with a walker), gaining some weight and able to get out a little. Dad also thinks his neuropathy is improving. He is now feeling some aches and pains. Those are all good things. We are grateful for every step forward. Dad's bloodwork continues to come back perfect. The doctors are very pleased with his overall health. The blood pressure continues to be our main focus. IVs are still given at home on an as needed basis to keep the blood pressure where it needs to be. Whenever Dad's top number is below 90 for a blood pressure reading, the Hospice nurse will come out and hook him up to an IV. Dad usually gets an IV a couple times a week. Within the next few weeks, Dad will be having another light chain test. The results of this test will determine if Dad stays on a treatment dose of chemo or moves to a maintenance dose.

Thanks for your prayers, calls and visits. Mom and Dad are grateful for all of you!

Status Quo

Well, everything is pretty status quo with Dad. A few weeks ago, I mentioned that we were considering changing Dad's treatment plan. At this time, we have elected not to change his treatment. Hospice is really helping by keeping Dad on a better maintenance plan. If we change to the new treatment plan, Dad will have to go off Hospice. The new treatment plan is a 28 day plan where Dad would take chemo for 21 days and then have 7 days off. We have discussed this with Dad and his doctors, and we aren't sure he is really strong enough for that right now. Being off Hospice would mean he would have to go to the doctor's office again for his regular IVs, etc. Right now, I don't think Dad physically or emotionally can handle the ups and downs he was having earlier this spring and we aren't sure the potential benefits of the new treatment will outweigh the negatives at this time. So, we are maintaining the status quo for now.

The Grill Master and his brother

Sunday evening we had a little cookout at Mom and Dad's to celebrate Father's Day. Since it was Dad's day, he decided that he was going to cook. So, he just scooted himself up to the grill and had at it.

Overall, I think Dad had a pretty good day. He was able to spend quite a bit of time outside and enjoyed having everyone around. Dad has definitely been more stable. Having Hospice has really helped Dad to develop a better maintenance plan rather than always operating in crisis mode. He is now able to stay consistently better hydrated and this helps in so many ways. Before, Dad would go to the doctor's office after he had become dehydrated and by then his body was so weak and worn out that it would take him several days to recover. Hospice is now working with Dad to prevent these "bottoming out" episodes and prevent the dehydration. Not only does Dad feel better physically, but it also helps him to have a more positive outlook.

After dinner granddaughter Elana decided she wanted to learn to ride a 2 wheeler bike. Always a sucker for the kids, Uncle Larry obliged. First, the tires had to be pumped up. And then they were off.....
And the next thing we knew, they were in the weeds!

I probably should have been checking to be sure everyone was OK rather than standing back and snapping picture. Always room for improvement I guess! (actually Elana was still giggling, so I wasn't too worried)

All in all, it was just the kind of day Dad wanted - pretty laid back, family around, flowers blooming, and a good nap in the chair!

Thanks for your continued prayers and encouragement. Mom and Dad cherish them so much!

Back Home

Yesterday evening Dad was released from the hospital and is back home. The hospital doctor spoke with the Hospice doctor and it was decided that Hospice could administer everything at home that Dad was receiving in the hospital. His IV fluids have been increased and Hospice can give Dad the shot that slows down his output. Dad's output did slow considerably in the hospital even before he received that shot. So, we are determining that dehydration also causes extra output and by increasing his IVs at home we can hopefully slow down these high output episodes that have been requiring hospitalization to get under control. Hospice will also use the shots as needed to try to keep the input/output balanced. Please continue to pray as we are making decisions regarding Dad's treatment.

Who's on First?

After spending 10 hours in the ER last night, Dad was admitted to Lakeland. Yesterday, Mom called Dad's GI doctor to let him know that Dad had been having very high output for several days. The GI doctor told Mom that Dad needed to be admitted to the hospital to get the output under control and the best way to do that was through the ER. (if that is the best way, I'd hate to see the worst way) At this point, no doctors have even been assigned to Dad. He is simply in the hospital receiving IV fluids - which he does need. But, the whole point of him being there is to get the shots that slow down the output. Mom was going to call the GI doctors office direct this morning since they don't even have Dad scheduled for a GI consult today. So, while we appreciate the team of doctors that have worked very diligently with Dad, sometimes it becomes a bit of a maze trying to figure out who's on first. Mom is exhausted. It was 5:30am this morning before they got Dad settled in his room. And now she has to try to track down doctors to figure out who is supposed to be taking charge of Dad's care. The last few days have been pretty hard on Dad (Mom too). Dad is pretty frustrated and just wants somebody to do something. Right now, he is simply asking everyone to PRAY. We believe in God's plan, we are relying on HIS timing, but it sure is a bit exhausting and frustrating in the process. Dad is very much comforted by knowing that many are praying for him. Thanks!

Please Pray

Dad is on his way back to the hospital and has asked for everyone's prayers. More updates later.

There's the bad news and then there's the good news

For the bad news, Dad has not really had any improvement in the last week. He continues to have very low blood pressure and had to go in for IVs four days this week. Making the trip to the doctor's office really is getting hard on Dad. The Dr. has been trying to find a way for him to get home infusions. Insurance won't cover it and even though Mom and Dad were willing to pay out of pocket, every agency they tried refused to administer the IVs due to liability concerns. At the doctor's urging, Mom contacted Hospice this week. We have been a little hesitant to consider Hospice since our only experience with Hospice had been the end of life care for our grandparents. We had wonderful experiences with Hospice, but weren't ready to give up on Dad's treatments. But, as we have now learned, Hospice has changed quite a bit over the last few years and now offers much more than end of life care. As a family, we met with the Hospice nurse today and she explained all the various services that they can not only offer Dad, but also offer the family. Dad will be allowed to continue his treatments. And, they can give Dad his IV infusions at home! What a huge answer to prayer! (did I mention HUGE answer to prayer). We are so very thankful for all the assistance they are going to be able to offer Mom and Dad. This is going to be such a tremendous help for both of them. (did I mention HUGE answer to prayer!) They even had an aide come out right away to give Dad a bath. They will also be able to provide most of Dad's medicines at no cost. Mom and Dad do not have prescription insurance, so that will be a big help. This all is the good news by the way! They also told us that if Mom just needs to get out for a few hours, all we have to do is let them know ahead of time and they will schedule someone to come stay with Dad. Mom needs the peace of mind of knowing that Dad has skilled care with him while she is away. We are going to insist that she take advantage of this! Dad has been worried about Mom, as we all have. So, he was very ageeable to having Hospice when he understood what a huge help it would be to Mom. The rather funny part about the meeting we had with the Hospice nurse was when the nurse asked Dad what his opinion was about the services she had explained. Dad said he really didn't have an opinion (since when?!) and wanted us (Mom and the 3 kids) to agree and decide. Once we all overwhelmingly agreed (and almost gave that poor Hospice lady a group hug), he was very comfortable with our decision and, I think, almost relieved. He doesn't want to be a burden to Mom. But, he knows that he needs a lot of care right now.

The other bit of news is that Dad's local Dr. had been consulting with Dad's Dr. at Mayos and they are in agreement that Dad needs to try an alternative treatment for his amyloidosis. The low blood pressure is caused by the amyloidosis and the blood pressure meds are not effectively keeping his blood pressure elevated to healthy levels. So, they need to more aggressively treat the amyloidosis. We are in agreement that other options need to be pursued at this point. The problem is that the alternative medication is jaw dropping expensive. I can't imagine how a few little pills can cost that much money! So, the Dr. has applied for a patient assistance program for Dad. The application process is very involved and quite lengthy. It could be weeks before we find out if Dad is approved to receive the meds under the patient assistance program. The alternative medication does come with some risks. We are aware of those risks, but still feel it is an option we need to pursue. Please pray with us that if this is the course of treatment that Dad should take that the patient assistance will be granted.

It just hasn't been the best week

Dad continued to get weaker as the week went on. Today, he collapsed in the parking lot at the doctor's office. His blood pressure was very low this morning when the home nurse was at the house and she sent him to the doctor for IVs. Fortunately, the nurse told Mom that she could not take Dad alone and Uncle Larry went with them. When Dad collapsed, Uncle Larry was right there to catch him so he was not hurt. But, it was still very upsetting for everyone. Dad was taken by ambulance to the ER at Lakeland. He received IVs and was given the option to be admitted for more fluids or to go home. Dad chose to go home. Personally, I would have preferred that he stayed at the hospital for a day or two to try to rebuild some of his strength. Due to Dad's weakness, it is very hard for Mom to handle him by herself at home. But, Dad is more comfortable at home and feels that he gets better rest at home. We, however, are concerned for his safety at home. We are also very concerned for Mom at this point. She simply cannot continue to go at this pace. Please pray with us that Mom and Dad will make wise decisions regarding Dad's care. Please also pray that the doctors will have wisdom in treating this blood pressure issue.

Just OK

Dad is doing OK. Not great, but OK. He continues to struggle with his blood pressure and as a result has had to make frequent trips to his Dr. to receive fluids by IV. We are grateful that at this time he is able to remain at home, but we also know that can change at any time. Dad just doesn't quite have the energy he did a few weeks ago. He is sleeping quite a bit and is also losing weight. When he sleeps a lot he often does not get the fluid or food intake that he should. He is trying to walk on a regular basis to keep his strength up, but it is difficult for him. Intellectually, we all know that we can expect Dad to have periodic set-backs. That is simply part of a chronic illness. However, it doesn't make it any easier. It is still difficult to see your Dad struggle just to get up in the morning. Things we all took for granted just a short year ago.

Please pray for Dad that he will be encouraged and for Mom as she cares for him. Mom is getting pretty worn out. She wants to be with Dad all the time, but she also knows she needs to take a break every now and then. Although it is hard for her to be away from Dad.

"Normal"

Dad is back home and things are returning to "normal". The last 9 months or so have redefined what we consider "normal". In our own way, each of us has had to come to terms with Dad's condition and accept the fact that our family will be forever changed as a result of Dad's condition. Dad was diagnosed in August of last year. Then in the fall we were all in crisis mode dealing with the quick and severe turn in Dad's health. So, it wasn't until the last few months that it really began to settle in that this was now the new "normal" for our family. This is not a journey any of us, especially Dad, was prepared for nor would we have chosen. We all had different plans, different expectations of what our life as a family would be like. But, this is the journey that was chosen for us. We know that God is faithful, and cling to his promise in Jeremiah 29:11, "For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". However, we have all wrestled with God along the way trying to understand in our own humanness the why. Why my Dad? Why now? Why this? We know we are not likely to find the answers here, but we still ask. Like Jacob in Genesis 32, even though we wrestle with God, we are still hanging on to Him trusting in His blessing.

Thank you for your continued prayers for Dad. His health is relatively stable right now, but he is often frustrated by his lack of physical abilities. Please pray for his physical healing as well as his emotional well-being as he continues to adjust to his "normal".

Hospital sweet hospital

Dad was planning for home sweet home today, but his visit to Lakeland Hospital has been extended a little. He has been eating well, his output has slowed down, but he keeps having blood pressure drops. Today, he told the nurse his blood pressure felt a little low and she should probably check it. When she checked it, the machine read 54/29. She thought there must be a problem with the machine she was using. So, she got a different machine. Same reading. Obviously, the machine wasn't the problem. The doctor had taken Dad off his IVs yesterday in preparation to send him home today. But, that little blood pressure issue got him hooked up to the IVs again. At this point, the doctors aren't sure why his blood pressure keeps dropping like that. He cannot go home with those kinds of drops. That is what caused him to fall and break his hip. Who knows what he could break next. So, at this time, the doctors are thinking Dad will be in the hospital another day or so providing he doesn't have another blood pressure drop. As Grandma Griffin would say, "One day at a time, sweet Jesus". We would also like to ask that you pray with us for our dear friends Bob and Bev PeArt. Bev's mom passed away yesterday after a lengthy illness.

Same ole, same ole

Not much news. Dad is still in the hospital receiving IV fluids and shots to slow down his output. Dad was also put on a liquid diet to give his digestive system a rest. The doctors are pleased that his output has slowed considerably, but he is hungry! (we're not sure if the output has slowed due to the medication he is receiving or simply that there is no input.) Hopefully, he can begin eating some food today to help get his strength back up.

Here are some photos from Mother's Day. Mom proclaimed the day "Grandmother's Day". So, here she is in all of her glory.
Mom and Dad with friends, Bob & Bev.

Thanks for your calls and visits. Dad gets a little bored in the hospital and enjoys company.

Off to a Rough Start

Dad's week has gotten off to a rough start. He has made a couple trips to the doctors office for IVs and they just haven't been able to keep his blood pressure up. He has also been having unusually high output from his bag. So, doctors conferred today and decided it was best to admit Dad to the hospital until they can get his output under control and keep his blood pressure at a healthy level. The team of doctors treating Dad are all very familiar with Dad's case and are grateful that he came to the hospital when he did so they can get this under control early. Dad is at Lakeland. I will post updates as I have more information.

On the Move

Dad is doing very well. The surgeon is very happy with his progress. He continues to get physical therapy at home. Dad is also getting a little stir crazy. Mom is trying to get him out of the house on a regular basis. He feels good enough that he wants to jump into all kinds of projects, but his mobility is still a little limited. It is encouraging to see Dad feeling well and enjoying being out and about. Thanks for all your encouraging calls and visits.

Home

Dad just got home from the hospital. He is moving a little slow, but is glad to be home and looking forward to settling back in. He and Mom will have to find a new normal routine. Dad is very anxious to get outside and enjoy the nice spring weather. Thanks for your continued prayers and all you do for Mom and Dad!

Mmmmm....Pizza!

Dad is continuing to recover well.  He has been moved to the ortho-neuro floor.  (He was put in Progressive Care following the surgery so his blood pressure could be closely monitored).  The staff physician who was with Dad during his past hospitalizations has been assigned to Dad.  Dr. Dave knows Dad's case very well and works well with Dad.  We are grateful for all he has done!  Dad's PT is going well.  He is up and walking around the room a couple times a day.  The therapist is pleased with Dad's progress and can already tell that he is getting stronger.  Dad is having some swelling issues due to the steroids that are given post surgery.  The Dr. is starting to reduce the dosage so hopefully the swelling will start to go down.  The Dr. is starting to talk about sending Dad home in a day or two, but is cautiously not making any promises.

The challenge is going to be preventing this type of fall from happening again.  Part of Dad's condition is that when he stands, his blood pressure can suddenly drop.  Dad does not have any warning that this is about to happen.  That is what caused Dad to fall.  We all want Dad to be up and active and doing the things he wants to do.  But, we are going to have to use some precautions.  The blood pressure drops seem to be more frequent on days when Dad is tired or in his words, feeling "dumpy".  He is going to have to learn to allow us to help on those days.  We definitely don't want a repeat performance of his last big number!

Doing Well

Dad is recovering well from the surgery.  He slept well last night and woke up hungry!  He ordered his own breakfast and was telling all his nurses about the pizza party he has planned with the grandkids tonight.    

Out of Surgery

Dad's orthopedic surgeon just came to let us know that Dad is out of surgery and did very well. He will be in recovery for 45 minutes or so and then will move back to his room at Lakeland. At this point, they are planning for a 3-4 day hospital stay unless other medical issues dictate he needs to stay longer.
Thank you for your prayers. Dad will be resting overnight, but the Dr. expects him to be up and moving tomorrow. He and Mom enjoy your calls and visits.

Two Steps Back

Dad fell at home yesterday and has a broken hip.  Mr. Independent was trying to do things on his own while Mom was out doing some yardwork.  Of course, Dad did not want to bother her and ask for help.  He is now in Lakeland Hospital awaiting surgery.  He is very uncomfortable, but they were able to put him in traction and that has relieved some of the pain.  The surgeon has met with them and said the ball of the hip will need to be replaced.  The surgery is scheduled for today between 4 and 5pm.  The good news is that they plan to have dad up and moving the day after surgery.  I don't think he could handle another extended hospital stay of just bed rest.  Dad's health is pretty good right now, so hopefully this surgery will not be too much of a set back for him.  Please keep Mom and Dad in your prayers today as they prepare for this surgery.  

Happy Easter!

An update on Dad - overall he continues to do well, all things considering.  He has good days and not so good days.  He has a hard time not getting discouraged on the not so good days.  He sees them as setbacks, although the doctor has told us that down days are quite normal with a chronic illness.  Dad did have a two week period where he was fighting a urinary tract infection and he had to go in for IVs several times.  His blood work was good indicating that he wasn't dehydrated, but his blood pressure continued to be low.  It was decided that his blood pressure meds needed to be increased.  Hopefully this will help to maintain his blood pressure at a healthy level.

Mom and Dad were able to take their annual trip to Gatlinburg.  It was good for both of them to have a change in scenery.  Dad did pretty well, but they are both glad to be back home.  

We all had Easter dinner together today.  Below are a few photos.

Please continue to pray for Dad's treatment.  Each round of chemo has gotten harder on Dad physically.  The chemo is necessary to control his disease, but it is also taking a toll on Dad.  Pray for the doctors as they direct Dad's treatment.  Pray also for Mom as she is Dad's primary caregiver.  She does it all with a happy heart and not a word or complaining.  But, we all know it is hard on her as well.  She daily sacrifices so much to take care of Dad.  

Good Test Results

Dad got some good news from the Dr. last week. His test results show that his amyloid levels are continuing to go down. This means the chemo treatments are doing their job. This is great news for a couple of reasons - obviously, it means Dad is improving. But, it also means that at this time he can continue with his current course of treatment. The chemo he is taking is the most mild treatment for his amyloidosis. Other treatments are available, but they have more side effects and a much higher mortality rate. We are grateful that at this time we do not have to consider other options. Dad's health continues to improve. He is looking forward to good weather, his annual trek to Gatlinburg in April, and being able to spend time outside. Stop by, he'd love to take you on a "jitney" ride.

Still Plugging Away

There really hasn't been much to report lately. No news is good news. Dad continues to do well at home. He has learned to monitor himself and knows when he needs to go in for an IV. He usually needs a little boost every two weeks or so. Dad enjoys being out and about or having visitors stop by. He is walking pretty well with a cane around the house. But, he still uses a walker or wheelchair when he is out.

Next week, Dad will see the local doctor that is treating his amyloidosis. We hope to have more test results that will determine if the chemo treatments are successfully reducing the amyloid level in his blood.

Thanks for all you do for all of us. Your prayers, help and words of encouragement are so meaningful to all of us.

Moving A Little Slow

I haven't updated in awhile as there really has not been much change. Dad has gone to the Dr's office a few times for IVs. The home health nurse comes almost everyday to check on him. Mom and Dad chart very carefully Dad's input and output to be sure he is getting enough fluids and nutrition. There are concerns that the amyloidosis is interfering with Dad's absorption and that is why he has to get periodic IVs even though he is drinking what should be plenty of fluids. The Dr's are all pleased that Dad has been able to stay at home this long.

Dad is also getting much better at communicating to us and the nurse when something doesn't feel quite right. Last week, he just kept feeling a little dumpy. His normal bloodwork looked good. But he just didn't feel good. Well, they discovered that Dad has a urinary tract infection. He is being treated for that with antibiotics. After doing further testing, they realized the antibiotics that were originally prescribed were not the right ones for the particular type of infection Dad had. So, he started new antibiotics this week. In the meantime, the infection had gotten worse. So, Dad is just moving a little slow this week. The infection is taking its toll on his already weak body.

Dad goes back to his hematologist next week. They will discuss his continuing treatment plan. When Dad was at Mayos, the original chemo treatment was scheduled for 5 rounds. Dad has completed all 5 rounds. They will do another light chain test which measures the amyloid levels to see if the chemo is effectively reducing the levels. Based on test results and Dad's overall health, the next phase of treatment will be discussed.

Thanks for all your prayers. Please continue to pray that Dad will be able to fight this infection and get back to work on improving his mobility and strength.

Happy Birthday Mom!

Today is Mom's birthday.  I won't tell you how old she is, but she turned 60 last year!

Dad is doing well.  He continues to work at getting stronger and regaining mobility.  Some of his muscles have forgotten what they are supposed to do and they don't seem to be remembering quite as quickly as Dad would like.  Dad is able to get out most days now whether it is a trip to Lowes, a doctors apt. or out to eat with friends.  We are grateful for each day and all your prayers!

"Look, Ma, no hands!"

Dad is becoming quite the show off!  This week, he has decided that he is going to start walking - by himself, no walker, no cane, no nothing.  We were at Mom and Dad's house a few days ago and Dad started to get up out of his wheelchair.  I asked him what he needed.  He said that he was going to walk to the couch.  I said, "do I need to be close by?"  He said, "Oh, probably".  But before I could get there, he was off on his own.  When he plopped down on the couch, he just beamed!  

Dad is progressing very well.  He still has his ups and downs.  Yesterday, he had what he would call a dumpy day.  He had to go to the doctor's office to review blood work to be sure all his levels are OK for his chemo next week.  While there, they decided that Dad needed an IV bag since his blood pressure was too low and he was looking a little, well, dumpy.  They could only give him a small bag since it was very close to time for the office to close.  He probably could have used a little more, but hopefully that will give him the boost he needed.  That is the first IV Dad has had in almost 3 weeks.  That is quite remarkable since we were expecting him to be sent home from the hospital with orders for regular IVs and possibly TPN feedings.  Dad also saw the GI doctor this week.  He was very pleased and has released Dad.  He no longer needs to see the GI doctor on a regular basis unless complications develop.  Dad's blood levels have all improved, he has gotten good test results this week and overall he continues to do very well. 

The photo below is from Christmas Day.