Well, we had our doctor visit yesterday and found that the blood counts were worse. Wow! He has set a new record. After our appointment we headed to the 3rd floor for transfusion. It took the rest of the day so we didn't arrive home until 9:30pm. The kids had been taken care of though because we had some awesome friends bring a meal for them.
Platelets = 5(LL) - never been that low before, though he was only 7(LL) last week. Normal range is 136-331(I just noticed that those are new numbers on the normal range but I'm not sure why). So he got one bag of platelets yesterday.
WBC = 0.3(LL) - possibly a new low here too, though it was only 0.5(LL) last week. Normal range is 3.6-11.3.
ANC = 0.1(LL) (absolute neutrophils) - he has been here at this count for a couple weeks, and there is really no where to go but up on this one. Is that good news or ? We just wish he was going up! Normal range is 1.2-8.0.
RBC = 2.18(L) - Normal range is 3.72-5.85.
HCT = 21.0(LL) - Normal range is 36.9-49.9. So he got 2 units of red blood cells yesterday.
We are keeping the liter of hydration going each day so his Creatinine is doing great at .90 - Normal is 0.70-1.20.
We are continuing the daily infusion of Ertapenem (antibiotic) and have changed one of his oral meds to a little stronger med to help fight this infection that must still be present. The swelling in his face has gone down (which is really nice) but the occasional fevers, chills, sweats, and lack of energy continue (not so nice).
We are hoping that his energy level can pick up a bit for BJo's graduation, and we hope the weather will be nice.
Tawnee had a great idea when she learned that Brandon and Megan and Turner were coming to visit - she put together a wonderful baby shower for them.
First we thank everyone who attended the baby shower. THANK YOU! You are awesome! And a thank you to those who were unable to attend and sent your love and congratulations. A special THANK YOU to our helping hands - those who showed up and helped out with the yard work, house work, and food and prep for this event. YOU ARE AWESOME! We love you!
We did get a few unprofessional pics to share.
Setting up the tent the day before:
The adorable welcome sign:
Loving family and friends attending the event:
The yummy food:
Thank You All!
And then the clean up:
or should I have said drink up?
Then came resting after a big day:
Another big THANK YOU to all!
Oh! Here is a photo of the swing set ... and my brother and his granddaughter.
You might notice that the weeds are gone! I had some helping hands with that project one day this week.
We had a visit with the doctor yesterday. We were eager to share facts about his week with her and to hear the results of the lab work. We thought for sure his reds were low, and probably his platelets too, and that he would get a transfusion of each. We know his whites are low and he still suffers from some infection that is attacking his body.
We were surprised to find that the reds were not bad for him (RBC = 2.89 and HCT = 27.5), so he did not need a transfusion of reds. The whites were very low (WBC = 0.5 and ANC = 0.1 [can't get much lower than that]), but as usual, nothing can be done there. Platelets were also very low (7). So we did stay to receive some platelets.
This last week has been filled with chills and fevers a couple times every day and evening until Sunday. He also added throwing up to his symptoms. Sunday and Monday seemed to be free of of fever and chills, but he was still very weak. Monday evening he began to feel some aching and swelling in his cheek/jaw area just in front of and below the ears. Tuesday morning it was worse. He felt like he had mumps. This morning it is more swollen and hurts to eat and talk, and is tender to touch.
The doctor seemed to think that this swelling could be good news, as the body is trying to fix the sinus problem. (It's draining from the sinuses.) That was a strange way to look at it from my point of view, but I'll take good news if it truly is good news.
The not so good news was the fact that Terry's counts are not improving. The MDS is causing the counts to remain low, and the fact of the matter is that a body cannot live with low platelets and infection for an extended period of time.
The hope is still that the graft verses host or graft verses disease kicks in. She said that it could happen anytime from 3 weeks to 3 months after the immune suppressants are stopped, and they were stopped about 3 weeks ago. I'm hanging on to that hope and I'm praying like crazy that we see some sort of turnaround and that things begin to improve.
During my weak moments I try to recall the blessing our bishop gave Terry last fall. The few words that I hang on to from that blessing are "that this miracle can take place". I need a miracle! I'm afraid my problem right now is that I want this miracle right now!
So, I add to my prayers, as I have done many times before - I pray for peace.
As I was sitting in the infusion room yesterday I tried to recall my prayers and if I had felt any real answers to them. I couldn't recall specific times that I had heard or felt a specific answer, but my mind immediately received an answer telling me that He promises to be with me. That is what I need. I need my Saviors love and I need Him every hour!
And, I'm grateful for a Father in Heaven who loves us and hears and answers our prayers, even on His own time and in His own way. He can make me strong.
Terry was not having a very good week health wise (more on that later) so we didn't leave the house or go do anything special, but we did enjoy a visit from Skyler, Lisa, and Claire. We love having family come and visit and play and grow together. I have always loved (that would be past and present) when my children play together nicely and are kind and happy with each other and I have learned that I equally love it when the grandchildren play so nicely together and enjoy each others company. There is so much joy that comes from a loving family, including generations of family.
Here is Akleigh after lining up chairs and baby dolls. It almost looks like a primary or nursery class.
Claire and Elsie enjoyed playing in the rocks together for a few minutes one day.
And they stood at the window watching their daddy's in the garden. (Skyler weeded and planted our garden while they were here and Michael put together a drip hose for it. Lucky Me!)
We had a hot dog roast at Thomas and Dana's one evening.
Terry was getting too cold and went to the car to warm up. Auger made his way there and visited with him for quite a while. Auger is a pretty good story teller.
The kids enjoyed the riding toys and the swing set.
Maybe the next time you see a photo of the swings you'll not see the weeds. I'm hoping to get to that today. Wish me luck!
It's just so fun to be together...
Claire had her first tractor ride. It was a bit concerning to her, but I loved it! ;) I'm going to have to get a better pic from someone else, but this is what I have today.
And the very last night they were here the kids played outside where the lawn had just been watered. Elsie's pants were wet, so we put her in a little dress that BJo used to wear. Akleigh loved the idea and wanted one too, and Claire thought it sounded fun, so we found another one. They were so excited.
Auger wanted in on the "special clothing" fun so we found a shirt and a pair of pants for him, that Anthony used to wear. I love having grama drawers with clothes in them for the kids to wear, and especially when they enjoy wearing them.
I was so happy to see that BJo had taken a photo of this sweet little guy. Boston wasn't up playing with the kids much, but he is so adorable and his smiles and "stories" just melt us.
We'll do this again sometime, but we're pretty sure we'll add some more children to the bunch before then. Skyler and Lisa are due in August, and it's a BOY! He will tip the grandchildren scale which is at this point
5 boys and 5 girls.
We love each and every one of them!
We love their mommies and daddies too!
It will be so fun when someday we can get them all together at the same time! ;)
Years ago Terry wrote a poem that used the phrase "in momma's dreams" and I guess it would be fair to use that phrase with a slight change - "in grama's dreams". I so hope to have all of our children and grandchildren together sometime after Connor gets home from his mission in January 2015, and before someone else leaves on a mission. That's my dream! I hope dreams do come true!
We have managed to stay away from the doctors office and hospital the last few days, but Terry's health hasn't really improved. The day after our doctor visit he began getting those trembling chills when he got a fever. We haven't called the doctor because he doesn't want to go to the hospital and he hopes that they subside soon ... and today seemed to be a slight bit better day. I don't want him to have to go to the hospital either, but I am concerned. He has added drenching sweats to his list of health issues this week and they have not been pleasant, to say the least.
We have been infusing daily hydration and antibiotic - new to the scene are these little balls or balloons of Ertapenem (antibiotic).
The picture on the left is a full dose before use and the picture on the right is after it has been infused. These do not require a pump, but have their own built in pump allowing it to flow through the line within a 30 minute period of time. They are so easy to use - just rip off the little white tape that holds the line, attach the end to the Hickman lumen, and unclip it - it starts infusing on it's own. I thought it was kinda fun watching it shrink the first time we used it.
We hope this is helping, but I am wondering if this medication might be the reason for the sweats, however, it could just be coincidental too, so we don't really know anything. Maybe we'll learn something at our next visit and I hope what we learn doesn't make us regret not going in earlier. If the doctor begins to reprimand us maybe we'll just smile and nod and say with an accent "no English!"
After visiting with the doctor yesterday afternoon Terry went into the infusion room for an IV antibiotic because he still gets a fever and needs the extra help to get rid of whatever infection is present. We will also be getting this antibiotic for daily home infusion today, and all this week. Dr. Smith said he probably should be re-admitted to the hospital but agreed to allow us to handle it at home since he said he thought he was doing slightly better. It's a good thing he thought he was doing slightly better yesterday, because I don't see much improvement other days. It's also a good thing he hadn't had any shaking chills before that visit or he would have been sent to the hospital.
Red blood counts look pretty good for Terry, which means that the transfusion he had all night Friday while in the hospital are still hanging around. All other counts are about what they have been lately. No big changes for better or worse.
He wishes to be up and doing something but has no energy to allow that. We will keep hoping, praying, and doing the best we can.
I managed to get three photos during a slow moment on Mother's Day.
Then I started cooking, eating, and visiting, and taking photos was forgotten. I think that means we had a great time together.
The tablescape was more of the same - assorted China plates and stemware - like I have been doing for a few years now. (Easter 2014, Father's Day 2013, Thanksgiving 2012) I just keep adding pieces each time. This time I added matching chargers (that I purchased a few months ago) under the plates. I didn't have time to make or purchase centerpieces so I just used the space for food. I would have loved to have some fresh flowers on each table, but my week previous to Mother's Day was too busy to complete that task.
Our company and phone calls from missionaries were our favorite part of the day!
Terry received red cells last night which of course made his HCT better this morning so he was allowed to come home today! We are happy to have him home. He is still lacking energy but feeling better than when he went in on Monday. We hope that he continues to improve, and will do our best to make it happen.
Tonight is prom night and here is a picture of three beautiful girls.
And here they are with this great group of guys, who get to be their dates tonight.
It's too late to think, but I'll share a little bit about Terry's health condition ...
His blood counts were low again today and they didn't let him come home. He slept a lot of the day and began a red blood cells transfusion this evening. They plan on giving him 3 units and hope to let him come home tomorrow if his counts look good.
I wish I could say it's all better, but it's not. We'll see how things are in the morning.
That's all I feel like writing today because I still have some work to do on the prom dress and I'm too tired to spend time at the computer, and it's already late, but just wanted to share something.
Maybe there will be a photo of BJo in her dress tomorrow. ??? One can hope!
Terry said he began feeling better yesterday evening. He slept so much yesterday that he didn't sleep much the first half of last night, but did get to sleep the second half. He read a few messages in the Ensign but has not had the TV on. (Can you tell I am amazed that he hasn't had the TV on?)
Today was a pretty good day. I didn't get there until about 1:30pm, so I missed his morning, but he said it was a good one. I was happy to be able to spend the afternoon and evening with him, leaving sometime around 7:15pm.
We walked around the halls this afternoon and he wasn't as tired this time as he was last time and we walked two to three times as far, so that is improvement. :)
I did however notice that his face was getting flushed after they started the antibiotic this evening (about 6:30pm). It could just be a simple reaction with no issue, so that's what I'm hoping for. He is trying to coax the doctor into letting him come home tomorrow, so we'll see how that goes. We would still have to infuse antibiotic and hydration at home.
We're happy to have a good day and look forward to another ..., and another ...
I got in bed without posting and had to get right back up to accomplish this task today. So I hope this makes sense.
I guess it was a good thing I couldn't call Terry yesterday evening because he was in no condition to talk to me. He had an infusion of platelets yesterday afternoon and then in the early evening had a fever and another trembling chill and was throwing up. That isn't better! I will have to admit that we should be glad that we chose to go to the hospital and not do this at home, especially since I was in ML (thinking he was doing well) last night and there would have been no one at home to help care for him. I'm sorry that he is in the hospital because it's never comfortable, but I am pleased to have someone there to care for him when I cannot be - and we have some busy days this week.
Today's plans include an additional IV antibiotic and a red cell transfusion (HCT is 18) which he was getting when I left at about 1:50pm.
Dr. Smith came to see him this morning for a couple minutes and made the comment that he had to have no fever for 3 days before he could go home, so that is somewhat discouraging since he did have a fever last night and I heard that he may have had a low grade fever this morning.
I arrived about 8:45am and wasn't there for Dr. Smith's visit but I was there when Dr. Miller (Dave) came in and asked Terry how he was doing and Terry responded saying that he felt like he needs help. He still doesn't feel very well, has no energy to get up and do much walking and he sleeps as much as possible, day and night. I thought he would get restless and bored and tired of watching TV. Well, he hasn't had the TV on since he has been there and he has only read part of an article in the Ensign. He rests and he sleeps! And he needs it!
Dr. Miller assured us that though they are waiting for tests to return, they are giving him the correct meds at this point - one IV med takes care of MRSA, another takes care of everything else, so he is covered that way. They are still obviously concerned about the sinuses and have tested for fungal infections. We don't know what infection is present, but we do know that there is one. It is common that even 50 percent of the time they are unable to locate the type of infection, but they are still able to treat and fix the problem. They are also giving oral meds and nasal sprays and the blood products to help combat whatever it is that is causing the problem.
I had to leave early again this afternoon to take BrittanyJo to Kennewick to pick up her prom dress and some hiking shoes. We had a bit of a run around, but we got them both. I have an insurance meeting in ML tomorrow morning before I can go back over to see him. I hope things will be looking better by that time, but I will probably miss the doctor coming in to visit. Oh Bother!
We are taking it one day at a time ..., because it just can't be done any other way. At least I've never known it to be a possibility. If you have a trick that takes care of more than one day at a time please let me know. :)
I left to see Terry after the kids left for seminary this morning and by the time I got there he had finished his breakfast and had a chest x-ray. He is still weak and tired but no longer having the trembling chills. He does get cold and needs an extra blanket but does not chill to the extreme like before.
He showered this morning and put on clean pjs, had lunch, and we took a walk around the hallway, then he got back in bed. He was feeling sleepy by about 2:00pm when I had to leave so I hope he got some good rest before they bugged him again. There are always so many interruptions during the day in a hospital, making it hard to believe that one can get better rest while there, rather than at home.
The doctor came in while I was there this morning and his biggest concern seemed to be Terry's sinuses - they are still bad, and we have known that, but nothing seems to help. This doctor wanted to talk to Dr. Smith and get a stronger antibiotic for him. I don't know if that has happened yet, or if for some reason it cannot happen, but I'll be anxious to find out tomorrow. I have been gone with the kids all afternoon and evening so I haven't been able to talk with Terry and don't want to call now in case he is sleeping.
I hate not being there with him all day, but we decided that I should come be with the kids and take care of the responsibilities here since this week is so over scheduled anyway. And remember, it is not a life or death situation, so I'm not worried that something critical will happen while I'm away. I just miss him. We haven't been apart this many hours in a day for a very long time. Crazy huh! I don't like it!
We don't know when he will be able to come home, but I'm pretty sure it's not tomorrow. Dr. Tucker mentioned 4 or 5 days. Things better speed up around there if that remains true.
As we were talking this morning he remembered a special moment years ago after being diagnosed with this disease when the Lord told him - "I know you, I love you, and you will be alright!"
We went to Wenatchee this morning for the first of the five Vidaza infusions this week. Terry began chilling again on our way there and was still trembling when we arrived. I am so sorry that this happens to him but I was glad it happened so that they could see it.
These chills are not just chills that cause him to feel cold, they cause his whole body to shake and tremble making it easily noticeable, so the receptionists and nurses quickly went to work to help however they could.
As we sat in the infusion room I had the thought that it's going to be a good day if we can get this figured out. We will be here every day this week for Vidaza infusion, so they can keep an eye on him. I liked that!
One nurse contacted Dr. Smith, who is in Moses Lake on Monday's and she wanted Terry to be seen by a doctor here, so we saw Dr. Tucker. After visiting with him for a few minutes we learned that he wanted us to go to the hospital for twice a day antibiotic infusions. We tried to talk him into letting me infuse at home, but he wasn't thrilled about that idea and didn't want to agree to it. I suggested that we could come to the clinic every morning for the morning infusion where they could get his vitals and blood draws and check him however they felt necessary and then I could give the evening infusion at home. We assured him that I have been doing infusions at home, even up to 5 times a day, but he still thought I might kill him and didn't want to agree to it. Really! He suggested that if we were okay with him dying on our watch we could do that. Oh Bother! Just to assure you - this is not a life or death situation here! But we did agree to go to the hospital, because yes we do want him around for BrittanyJo's upcoming graduation, and we didn't want to feel anymore feelings of guilt or inadequacy. He does seem to be a fine doctor though - I think Dr. Smith told Dr. Tucker that he was going to have to lay it on thick and strong if he was going to get us to agree to hospitalization ..., and so he did!
Terry will no longer receive Vidaza this week and is presently in a room at the hospital until this infection is cleared up. So much for the good day I was feeling when our favorite nurses were caring for him.
We were sent to the world of waiting again, where it seems everything is done in slow and hardly steady motion. It seems to take hours to get anything done in a hospital, unless it's vitals and then that is too often. Oops! I'm complaining a bit, aren't I?
Well, I had to leave Terry early this afternoon so I could fulfill some assignments we had at home - we really thought we'd only be a few hours this morning so we had promises to keep. I left about 12:15, just after the hospital doctor finished up and just as the lab assistant came in to take his blood.
I talked with him this evening and he is doing fine - but I already knew that didn't I?
He has had a CT scan and a couple bags of antibiotic.
Please remember that he is fine and that there is no need to worry. I hesitated to share this info, especially since I know it would make Terry a bit uncomfortable, but decided that it was the right thing to do since I have promised to share our medical life with you, and if I also let you know that we are all doing fine and we are not in need of anything at the moment. However, we would never turn down a faithful prayer.
Terry has been feeling extremely weak the last few days. He has had more chills, joint pain and muscle soreness too. We took his temperature this afternoon and found that he had a fever, so we called the doctor who told us to go to the ER. There was concern because of the blood transfusion he had Tuesday.
We went to Wenatchee, but Terry did not want to go to ER, so we went to the clinic and made our way up to the nurse who kindly (yet feeling somewhat forced, because Terry was not willing to go to the ER) put him in a room and took his temperature and blood pressure. Those readings were more normal by now, which we expected because on the way to the clinic he began to feel the sweaty feel one gets when the fever breaks. He actually wanted to just turn around and go home, but I didn't agree to that one.
The doctor came in and visited briefly and sent us to the chemo room where they took his blood (to check the counts and for a culture to check for infection), and then they infused some antibiotic and a liter of hydration. Those nurses are so kind - even when you show up unannounced.
They took care of him quickly and we were able to get home just shortly after 6:30pm. FYI - we have never before had a liter of fluid infused over a one hour period of time, but it can and did happen today.
We then infused one more liter of fluid when we got home (but this was infused the normal way, over a four hour period of time). We also began an oral antibiotic.
Terry was feeling somewhat better this evening, but we'll be anxious to see what a new day brings. We hope it brings more strength and better health. That's what we always hope!