Hi all! Hope Monday has treated everyone well. We went on our morning walk today, about an hour earlier than normal since my daughter didn’t have to work last night. 1 hour and 3 minutes and 2.3 miles–yay! Of course I have to keep in mind that the amount of time spent walking is the most important but I am also curious as to how far we go during that time. When I first I got up and out of bed this morning I was absolutely sweating to death and turning the air on didn’t help. I sat in my chair in the living room sweating. Anyway, the walk didn’t help as far as the heat goes. I have smothered all day and am just now cooling off. Come on cold front! May get down in the 50s tonight so maybe I can sleep good.
One thing we were talking about today was friends, again. Won’t go into great detail there but the thing I went off on a tangent about was when people message or text you, can you hear their voice in your head? Is it just me? I can hear them as if they are actually talking to me. That may be why I don’t mind being emailed or texted a lot. Who knows! I know I can’t be the only one.
We live in the middle of no where, so when we are walking there is just us and woods and the sounds. My favorite part of the walk, other than the fact that someday I will be cute (ha I am funny), is that the woods smells. I love the smell of the country early in the morning. There are really spicy smells and woodsy odors on one part of our walk. On another, and this one took me a long time to figure out, was some wild smelling stuff that smelled better than the best perfume you could get. Finally found the source of it, some really pretty flowers that were way back the road and not anywhere near where we kept smelling it at. The smell from those seemed to lurk everywhere and follow us. Then a different flowery smell on another part of our walk that actually smelled like flowers blended with Downy. And the smell of clean–everything smells so fresh and new and clean.
I thought I would go into greater detail over what eating changes I have made. I have completely stopped the soda. I don’t even drink diet. I have the impression that sodium even in the diet type may cause us to retain water and I don’t need that. I put it down. I do drink tea, made with Splenda and coffee. I love the sugar free flavors in water. I actually drank a whole unflavored bottle of water today and that was a bizarre thing for me. I actually wanted it. Been very thirsty today too. Hopefully it was just related to being hot. I have also cut as many carbs as I possibly can. I am having a hard time finding side dishes to eat with stuff. The whole point of this diet is that I can’t stand lots of fruits and veggies. If I could I doubt I would be fat. At least one side dish in almost every meal would be a potato or a noodle. I can’t have those like that anymore. I also don’t care for salads. I am at a loss on what to do. Hopefully I will figure something out. I can’t shake the feeling that I am just starving all the time so I added some more protein today and I do feel a bit better.
Jeffrey and Annie both have their own blogs. Jeffrey’s is https://beffsstories.wordpress.com/ and Annie’s is https://anniebanannieee.wordpress.com/. They do pretty good so check them out if you get a chance.
I am really not trying to relive our experience with Jeffrey’s leukemia. I think it is very important to share all this so it can help someone else, even if it only helps people understand that what they are thinking is normal. I think it can help anyone who has a loved one experiencing a serious illness. It is a huge part of our lives still and always will be. There have been many positive changes that have come out of this whole experience, including spiritual (growing closer to God), relationship related, and just attitude changing in general. All of these changes were needed in our lives. I try to believe that all things happen for a reason and this was a blessing, because Jeffrey is healed and things in most regards have gotten better. I cannot look at is as a negative. I really do try to see the positive in everything, even in the most dire of circumstances.
Here are a few more entries of the original blog I did when Jeffrey was sick. There aren’t many left but we will keep going until we run out.
Hello all! Hope everyone is enjoying the warmer weather we are having. Said it could snow up here Sunday, but I have hope that we will be home before then!
I had several questions that I asked the DR the other day that I thought I would share with you. I decided to ask about his immune system and how the chemo would effect it in the long term and about him retaining anything that would still be working as far as him immunizations go. I was curious if he would be stuck the rest of his life wearing a face mask due to possibility of getting sicker easier and how long that would last. The DR said that they were monitoring his immune system as we go and had he been sick during treatments that they would have already started him on this thing called IVIG ( if I remember it correctly) if he had shown signs of getting sick. Basically if he hasn’t had that then there would be no worries as far as him immune system goes. About 6 months after chemo is over his immune system would return to about how it was before chemo started and he would indeed retain enough of his immunizations for them to still be working. Also he will not need to wear a mask the rest of his life.
I went ahead and decided to ask if there was a level of remission or how they determined there was no issues as far as his body recovering faster some times as opposed to the first round. She explained there was no level of remission, either you were in remission or you weren’t. What they consider to be in remission is less than 5% blasts in the blood. His counts at both of the bone marrows in January and February were at less than 1%, which is considered the same as 0 they said. Whoo hoo! I of course had to ask well what happens if they register as 6%. She said they would look at the whole picture as far as how he feels, how his body is reacting, being sick or not, etc. Then they would make the determination from there as far as what to do.
She then went ahead and told me that since we are finishing up round 3 what would be in store after all the chemo was over. She said for a while they would do blood tests and stuff, and remove his central line. They would schedule weekly visits, and then bi weekly then monthly and every 3 months and every 6 months to have check ups. I may have some of that wrong ,but the idea is that they schedule them farther apart as time goes on. Basically as far as remission/relapse goes, if we can go through the first year in remission, then the chances for relapse go down, and continue to go down the longer we go. She said the first year is always the toughest. She said that on January 15, 2015 if he has remained in remission that long, they would let us know that he is cured! Let us hope and work toward that date!
This morning around 430AM we acquired a fever. It was around 102 and has fluctuated all day around 98-102. They did a blood draw which involved poking his hand, which he did very well with, and started him on two antibiotics. He also has to be pre-treated with Benadryl as the one antibiotic breaks him out pretty severely. He woke up around 1PM, saying he wanted to go to school. He took his meds and went, and painted birdhouses with some football players, which brought him back to the room around 4PM. He went back to sleep and has been napping ever since. This again is normal, as the body fights itself when it is rebuilding. His ANC was at 56 I believe, and they said these are true numbers now and shouldn’t fluctuate. The 3 parts of the good news are 1-the chemo is working on his body as it should, 2-we should come home in the next week or so, and 3-since his body is rebuilding slower this time, we should have more than 2 days at home! Whoo hoo!
The picture on this entry is Jeffrey with Heather, doing the bingo program that he got to host! He loves hosting it, and I have more pics that I will get on here.
Have a good night! Thank you all for taking the time to read my updates, and thank you for the support!
Hello all! Been a while since I have been here so here I am! I have lots to say, so I will do my best to balance the bad with the good.
We went home and had a blast last month! Every day we had something planned. We visited his classmates on Friday, and he has a date for the prom up here! Whoo hoo to that! On Saturday we got together with family and had lunch. What a day that was! We had such a good time then we took Jeffrey to Wal Mart but let me rewind here. On that Thursday when we came home he ran Uncle Jeff all over Greenwood shopping! Of course Uncle Jeff was all gung ho taking Jeffrey wherever he wanted to and we had a blast that day too. Sunday I med Uncle Dee and Grandma Crowder in town and ate breakfast with them on Jeffrey went to church. Monday we didn’t do much and Tuesday I met a friend of mine for lunch while Jeffrey hung out with EJ and Grandma Todd and hung out with EJ and Grandma Todd several times that week too. Wednesday Sharon and John brought us our new stove and Uncle Dee came and measured what it would take to get our rural water hooked up and the stove going. Thursday I think we went shopping or something and Friday Jeffrey went to see Grandma Crowder and Derek and I had supper with Curt, Suzann and Janet. Saturday, Jeffrey, Annie and I went to the movies with Aunt Rhonda and Kaylin and saw “Diary of a Wimpy Kid”. We had such a good time! Sunday we met in town again so Jeffrey could go to church and I packed for Riley.
On that Monday we were off to Indianapolis before dawn was cracked! We knew by Friday of the week before that our numbers were good enough to be readmitted so it was no surprise when we were. The only thing they did this time before admitting us was a lumbar puncture where they check his spinal fluid to see if there is any leukemia cells there and inject the Cytarabine into his spinal fluid. I again got to go in and watch them do this, and Derek this time decided not to as he was about beat from the early rising. We had to go into a shared room and let me tell ya’ll that was sheer torture! Being in the hospital for any ailment is not something that one wants to share with the neighbor next door! Then they went home and we got another neighbor who for the most part slept all day and was up all night! GEEZE! It is hard enough to sleep on a pull out couch but my goodness. After three days of that or so I was punch drunk and everyone who got near me realized I wasn’t right…..Then Jeffrey got an infection that is referred to as C Diff, which happens when you take antibiotics for a long time. That got us alone in the shared room because he had to be isolated! A few days later we got moved into a shared room and in one we had been in before. Seems like beds were hard to come by so Derek had been having to sleep in the lounge which he did not like at all, even after we got into a private room.
OK so we got moved and before we moved and after it seemed like this particular genre of chemo drugs or at least the combination was taking a serious toll on him. He was tired more, throwing up more, needed more stomach meds and such this time and didn’t argue over taking them. We knew going into this round it was going to be one of the roughest, because his body is wearing down due to the toll the chemo was taking on it. Anyway it took a bit to get his numbers to drop as they started climbing at first. Since this Monday he has been at 0 ANC and has had to have 2 blood transfusions and 2 platelets, and I see more on the horizon before the weekend is out.
Let us back up to Monday. He has still been throwing fits over taking his medicine and due to his ADHD/ODD we have him on a plan to reward him for good behavior or take something for bad behavior. Seems easy enough right? Well not so much on Monday. He threw an absolute fit around 8 PM that lasted until 10PM. Oh my! Monday was just rough and we got through that one. He is still taking his meds as he should. Tuesday wasn’t bad, but Wednesday night was when the new adventure started. He started out with a temp around 1AM Thursday morning of 101 something. We checked it again at around 4AM and it had jumped up to 104.1! That is the highest he has ever had in his life! Holy cow! They had to draw blood with a stick and from his line and 7 hours later, count them 7, when a normal culture takes around 48 hours, they found something growing in it! So that just changed the plan up a bit. Dc’d the vancomycin (spelling?) and added a new one that begins with a g—not sure what the infection is called but I was told it is serious enough that if it doesn’t go away we could be looking at a trip to the ICU. They say this should knock it in 3-5 days. At the same time that this was going on, the family next door, their little girl was passing away. So needless to say my capacity for rational thought has gone completely away at this point.
But he is doing much better today. No fever, he has been eating and was up for activities. I know he didn’t feel good yesterday. He was down most of the day. And he just wanted me to lay with him when he went to bed and I did. We shall hope that this goes away and does not require a trip to the ICU. Keely is back so he has been enjoying hanging out with her as well! They get along so well! She just runs him all over the place and he enjoys every minute of it!
And a special note for all the Purdue/basketball fans! Jeffrey got to meet Gene Keady and Chris Kramer and got two autographs from him! I have a photo on Facebook and will get one on here in a few! Until then here is the link to it http://www.facebook.com/?ref=home#!/photo.php?pid=4397588&id=516617340. That may only work if you have Facebook. If not, I will get one on here.
Wednesday when Derek and my brother came back up Uncle Dee had come by too. Jeffrey really enjoyed visiting with him. And may I just ask Uncle Dee, did you find a trunk yet? HA!!!
Again I want to thank everyone who has stood beside us with prayers and more during this time! We appreciate it so much! We would never be able to make it without them, the prayers, support, friends and family!
Hello again! Had some info to pass along plus a whole bunch of pictures to post!
The infection that he got that could have landed him in the ICU is called citrobacter. They treat it with gentamicin and cefepemiene. Apparently the bacteria that causes it is already on our skin and in our bodies, and since he has no immune system, it took over or tried to. It requires a 14 day treatment that has to be ran through the IV so we won’t be home until after 28th. The other thing is, his ANC took another drop. He was at 0 until Sunday and then he went to 16, stayed there on Monday and today dropped to 10. I just don’t see his numbers climbing up until then anyway and even though this has been a rough round, his numbers haven’t been this low until this round.
He has a place under his nose that he keeps picking at. He picked at it the other day and ended up with a huge blood spot in the bed by morning and required platelet over night when he didn’t actually need them. He has successfully picked it off again now. I am not sure how to deal with that one, but we may be looking at a platelet transfusion again today.
I have a bunch of pictures to post on here. As you already know he met Gene Keady and Chris Kramer a few weeks ago. Today, we got to meet IU football players! That was awesome, and they were huge! There was about 7 of them in here, and I had to take 2 pictures to get them all with him! Wow! They gave him a bag that had an IU shirt, pencil, pom-pom, pennant, football schedule, kazoo, book bag and an IU towel in it! They were very nice and very happy to cooperate with having their pictures taken twice! A big thanks to whoever arranged that one for us!
Otherwise the exhaustion of being here is still looming large in our heads. We are so ready to be home and to be able to get on with our lives! But at the same time we are just as thankful this type of place exists so that we didn’t really have to go far from home to get the treatments he needs.
Hello all! The time is winding down for this round! Yay! Thank goodness! He is ready to come home and relax! I don’t think a lot of people understand the mental stress and complete mental exhaustion that this entails. But that will be alleviated here shortly when we get to head home. The only thing I can compare it to would be like being stuck somewhere in a blizzard far away from home and no way in or out and nothing familiar around you, even if you had previously visited it. And I know he feels the same way!
The thing that slowed us down was the antibiotics that he had to finish. The last dose will be at 1PM and we should be told to go home after 2PM. They said they would start the paperwork tomorrow so I hope that is ready to roll. Then we need to set a date to come back and I am not sure how that will work being so far away and the fact that his numbers are not climbing very fast at all. I just don’t want to have to make a trip to Indy only to be sent home. As great as that would be, it is still costly and I have to consider that as well. But we will work that out here in a bit or tomorrow I am sure.
This is about all I have to update on. Just trying to keep myself and him sane until we can go home. Not sure about our plans at home yet. I am sure we will get something interesting going!
The next few go into some serious stuff that I will add additional notes on and one of the last ones I did there talk about his Make-A-Wish trip, which we still talk about to this day. I will have more to say about that too. Imagine that. I will also look for some of the pictures that I am talking about on here and add them later on.
I think i am ready to call it a completed blog for the day. Have a good night!