Hello again! Walking this morning was awesome-1 hour 6 minutes and 2.34 miles. The cat went part of the way with us too but he pooped out and went home. Silly cat. It was really cool and for the most part we had a nice breeze. It didn’t seem too hard today to walk. Well actually it is getting a lot better. Walking up and down these hills out here is getting so much easier and the longer I go the less I am huffing and puffing. I know that my huffing and puffing will get better. I do know that sometimes it seems like I am doing this for nothing especially on days when it feels like your gut has backslid into being as big as it was. I am noticing changes. I just have to keep at it as long as I can which will be indefinitely at this point. Maybe when I get to where I want to be I can cut the exercise by a day or so but knowing how things work for me, I will have to add a day. I will need to exercise 8 days a week…..
I have learned over the past couple of years and part of it just recently that it is just as important to take care of yourself spiritually as well as physically. I have been reading my devotionals and my Bible and saying my prayers without fail almost daily. I say almost daily because if I know I am going to be gone I do my reading a day ahead but every day I talk to God. It doesn’t matter what it is about, how silly it is or how insignificant it is, I talk to Him. I am sure he gets tired of me but I never tire of talking to Him. I like everyone have very serious requests, some I am still asking about. I will see results, but I have a feeling it will be something huge that will knock my socks off. I cannot do anything without knowing that I have that inner peace that comes from a relationship with God. All my decisions aren’t perfect, as I am human, but that inner peace that comes with knowing that you are trying your best to do what is right is priceless. Tonight we start a new Bible study at church so I am excited for that. One of my friends that I don’t get to see very often will be there so I am anxious to see how much trouble we can get in, like we did at the last Bible study. They should know by now not to let us sit together….or me and her Mom either…..ha!! We are all dangerous when left to ourselves. Ha!!!!
Taking care of yourself physically is important as well, internally and externally. This stuff I am dealing with as far as my health goes has changed my attitude on many things. I just have to keep plugging and not give up. And I won’t. I think I have said before that all things happen for a reason, and I think that when we get to the point where changes HAVE to be made, I think our body as a whole gets on board and cooperates. I think we can cooperate before then but there is something about need that changes the view of everything. If I didn’t have whole body cooperation, I would not be able to do this. God is also guiding me and without His strength, I couldn’t do any of this either. I can do all things through
Christ who strengthens me-Phil 4:13. I do say I am very head strong and stubborn and I have not a clue as to why I haven’t been able to take care of this before now. I can only figure it is all about the need. I am not saying that need is the ultimate motivator for everyone but you know maybe it is. If someone feels like they need to be smaller, or healthier, or whatever they think they need to be, I think that would have the same influence. We all know that for serious changes like that there has to be, at least for me, an underlying NEED to make these changes because they aren’t easy. Furthermore, at least here where I live it is so much easier to purchase food that isn’t necessarily good for you but good tasting and easy to fix. Let’s just say that if I DID like fruits and veggies the fresh ones are in limited season in this part of the country and I would be stuck with the produce section for the most part, or cans or frozen. Or trying to find a restaurant with a low carb option. That is almost impossible. It is so much easier to eat what I call “normal”, burger, fries, sweet sodas, cakes for dessert, etc., than something healthy, It is how we were raised and the ingredients are easily accessible. There is nothing wrong with that, but later in life when weight almost kills you, it isn’t easy. This is all what I think and what I have noticed in my household and area stores over the years so don’t spazz out. I still think moderation is best but when you have a craving for something and but if you aren’t concerned with how it affects you, you don’t care how much you eat, which was apparently my issue which I have changed.
For those who are curious, this is my 4th week of the new diet and the 3rd week of exercise. I still think I need to add more exercise but for now I will just stick to my walking and my weights in the evening, if I can remember to do them. I talked about the changes I made yesterday and adding the extra protein did seem to help. I had been thinking that it was either the lack of carbs and sugar or maybe an hour of walking was wearing me out. I will get myself leveled out but that takes time too.
The blog I wrote when Jeffrey was sick is getting close to coming to its end. The post today was a rough one to write then. Jeffrey’s Grandma Crowder, Derek’s Mom, had gotten sick and was taken to Methodist a day or two before we were able to come home. She was very sick and there was nothing they could do for her. She passed away the next morning after we came home. I think that was one of the hardest times in our lives, when she passed away and Jeffrey was right in the middle of taking chemo. Looking back it looks like something that was impossible to get through, but we did. Again God had us when we didn’t even have a clue for ourselves. Here are the next few entries.
Hello all! I know, it has been a long time since I have updated, but we have had a LOT going on. I will try to get everyone up to speed as best as I can! But boy it is a hot one out there today isn’t it?
The last entry I made was on April 27th I think. The next day Derek calls me to tell me that they are taking his Mom to the hospital and she was unresponsive. Once she gets to the hospital they determine she had a massive brain hemorrage and was airlifted to Methodist here in Indy. Derek decided to come on up that night and brought Larry, my best friend of 22 years, with him. I was so thankful he came, because I wasn’t for sure if Derek would be ok on the drive or not, and he needed another person to help him see in the dark for his turnoffs. I am so thankful to Larry for coming. None of us would have survived until we went home had he not come! I know I don’t say it often enough, but thank you Larry, for always being there for all of us!
When he got here we went over to Methodist to check on her. Due to the part of her brain that was damaged the doctors couldn’t do anything for her. We came home on Thursday, and they let us know on the way home that she wasn’t doing well. Jeffrey cried from Bedford all the way home. I felt so bad for him. She passed away that Friday. Talk about sad! Here Jeffrey and I and his Dad, fighting the battle against leukemia, and Jeffrey and her had been so close and now he had to tell her goodbye. We went on Saturday to make the arrangements and Jeffrey wanted to be a part of that so we let him go too. I was very happy that he wanted to help but a little scared too that it would be to overwhelming to him. He told me and his Dad later that he knew that Grandma had not been feeling well for a long time. I was thinking of Grandpa Crowder too. I can still see him sitting there on the bank of that pond collecting persimmons with me, trying to get to them before the dogs did. But they are together again now!
On Sunday Jeffrey went to church with Uncle “Dee Dee” but we were late but he did get there! We didn’t do much on Monday but the viewing was Tuesday and I had a dr appointment. The funeral was Wednesday and on that day I had to run to Bedford in the AM. Yes trying to cram in a month’s worth of errands while we were home! We had to leave early from there to get ready to go back to Riley on Thursday. We got to clinic Friday and got to our room and they started chemo that evening. We only had to stay until Saturday and we went home until the next Thursday. Since his numbers wouldn’t drop that fast there was no need to keep us. He had two days of chemo and a shot. He was pretty icky at home. He was sick at least once on 3 of the 4 days we were home. We just let him rest mostly. He wanted to get up and do stuff though. He spent time at my aunt’s and my Mom’s and I went to lunch with my best friend Suzann the Wednesday before we came back. That was a lovely time! I miss her so much when we are here! I talk to her everyday but still that doesn’t replace a good lunch together!
So again we arrive at Riley on Thursday and first the parking garage was all boogered up. We drove for 16 minutes trying to find a space and could not and they charged me $2 for being in there! I was NOT a happy camper! Then we get to our room after we wait forever in clinic and they try to put us in a semi-private room. Sorry, but I was NOT having any of that this time! We ended up in one last round and was only supposed to be for a few days and that ended up being TWO WEEKS! Needless to say we had a private one 10 minutes after getting there and we got very lucky! I was fully prepared to do something else other than ride that out again. It wasn’t just me either! Jeffrey wasn’t having any of it either! I am sorry but the things that one goes through during chemotherapy, one does NOT need to be either sharing that with the neighbor, OR partaking in their catastrophes either!
Once we got moved in the chemo started rolling and it didn’t last too long it was done by Saturday, but the dose of the Cytarabine was very very high. He then had another shot to end it on Saturday and done! We are all done with chemo! It was done at 11:15AM last Saturday! YAYAYAYAYAY!!!!! His numbers fell between Monday and Wednesday and have been low ever since which is good, and we want them to be like that. That means the chemo is doing what it is supposed to. So far this round he has had two platelet transfusions and one bag of blood.
Then this last Thursday we spiked. We knew it was coming, it had happened every time, and hence the reason AML patients are in the hospital for so long. Would rather be here than in the boonies when a fever spikes! It started out mild around 10:30PM but an hour later hit 104.7! Damn! I thought the last round at 104.1 was high, but this has been the highest he has ever been in his life! It dropped and continued to drop and hit a low of 97.9 the next AM but so far at least once in the day and night up until today he hit a fever. He was on three antibiotics and now they dc’d the vankomycin (spelling?). He has a gram negative rod infection which is the same as last time, the citrobacter infection. His blood and platelets are heading down again, but remember his body is worn out and will be longer to recover. Tomorrow will be day 18 of this round.
So far today he has been up and about and has visited Keely several times! We have hung out and talked to Michelle and Keely most of the day! I am so glad they are back, although I know they are like us and hope we could stay home! My brother came up last week with Derek and God knows I needed some of his humor!
Last week we did get to meet some Indy drivers. Sarah Fisher and John Andretti were among them! That was awesome! I have pics I will post soon!
That is all I have to report for now. Thank you all again for the prayers and support! We do appreciate it!
The next one is from after his treatment. It was later in 2010. The two after that, they are in 2012 and 2013. The one in 2012 is about his Make-A-Wish trip and I want to write more on that before I post it. We still talk about that trip almost every day and we did get to meet some famous people. Stay tuned for that! Here is the last 2010 entry.
Hello all! Boy it has been a long time since I have been on here updating but I figured it was time!
First of all, Happy Birthday to Jeffrey! Eleven years ago today at 4:18AM Jeffrey arrived in this world! The last year has been such a struggle and this birthday is soooo important to us! We are having a party tomorrow for him and I am sure it is going to be a big one!
Before I go on, please remember to say a prayer for all the children at Riley. One of the families we knew from Riley, their son passed away earlier this week. Please keep Cody and his family and friends in your prayers. It just saddens me to no end to think that children, and adults as well, have to suffer through cancer or any type of blood disease. Let us hope someday for a cure so we don’t have to deal with this ever again!
I am not sure where I left off at in the other entry, so pardon me if I repeat stuff. About midway through the last treatment, as I think I had put in the previous entry, Jeffrey had spiked a fever and it just did not want to go away! It would go up and down every day for a long time. I like to never thought it was going to end! It finally did! In the middle of all of it I finally asked one of the nurses what would happen to cause us to have to go to the ICU. It would have to be breating problems and things like that she said. Thank goodness we never had any of those! Just with all that was going on, I had my doubt that we would be leaving the hospital together. That last round was a very, VERY tough round. It was combination of the high doses of chemo and the fact that his body was wore down.
Right before we got ready to leave, I didn’t think we were going to get to go home. We had been inpatient for, I don’t remember now how many days, but counting the two days that we came and then went home, we were well over 30 days total in round 5. We kept waiting and watching the numbers. They would just not come up like we had hoped. We go really lucky, and on that Saturday, we were finally allowed to leave! There was absolutely NO WAY we were going to spend another day in there! By the time we were done, we were all ready for home! Just the sheer stress of what is going on with your own child, and those around you, it was just way too much, and being away from home by this time had really taken its toll on all of us. Needless to say when they have us our walking papers we were gone! God that day was hot! I had taken my car up with us and drove home with no air! I liked to croaked! But we made it home, no issues, and the very next day I think Jeffrey went to church with Uncle Dee. Back into a normal routine!
We spent most of June with home health coming in twice a week, cleaning his site and flushing his line. Dr Zeng did not want to remove his line until they made 100% for sure he was transfusion independent. At the end of June we went in to have his central line removed and a final bone marrow test. That surgery went very smoothly, other than the fact that we had to wait all day to get into surgery. He had no complications at all during the 6 months or so the line was in, and we were so happy for that! Then there were no issues with removing it at all. He had no problems with the line site or any infections.
Medically he had been coming along just fine in June. Otherwise, those who know us well, you all know about the issues we were having. He got to a point where he was saying he was taking his meds and then spitting them out as soon as we would confirm he took it. Needless to say this led behaviors that to a breakdown of sorts and that almost turned bad! Not only that but he did several other things that should have never ever happened, and would not have happened, had he been on his medication like he was supposed to. He was then rewarded with the option of do you want your meds in pudding or applesauce. He has been on them since, and although we may have to add another medication on the near future, things have improved! He was grounded for quite a while from several different things, and he did learn a lesson from all that thank goodness!
In July we had our first checkup. Our schedule will be one time a month visit to Riley until 6 months after the final chemo treatment, which will be December, then we will go once every two months to finish out the year from the last treatment. During that visit, I asked some very important questions. Dr Zeng said his immune system would not be close to normal for about 6 months after treatment. It was important to keep him from sick people, and if he had to be around them, then he needed to wear a mask. He could then go swimming and do most of those type of activities. The one marrow test still showed him remission—yes!!!! He had gained weight, up to 94.3 lbs. from the 79-80 that he was when we left in June. He shouldn’t have to have any more bone marrow tests. And I was concerned about his color. He would still have days when he would look paler, then go away. Dr Zeng confirmed that there was no reason to panic, and if I had concerns, they would look at the overall picture of blood tests, if he was constantly tired, and other symptoms, and if there was a need, then further testing could happen. Basically, no need to have a fit if something seems out of place to me. His numbers in July–ANC 1400, hemoblogin 13.6 and platelets 326,000. He was moving right along! They prefer no OTC meds, and if we need something they can get a prescription for us. That appointment went very very well!
July sailed by, generally with some such thing going on every week, and most of August flew by. Jeffrey keeps eating good, going to school, and some of his behavior is lining out as well. We had another appointment in August, and again, be careful around sick people, etc. When we were there he had a slight head cold. As far as I know, and I could be wrong, if he gets a fever I need to call, but it may not require a trip to Indy, but they need to know about it as soon as it happens. His numbers in August ANC 1960, hemoglobin 14.2, platelets 248,000. All the numbers are great and Dr Zeng is still happy with how well he is doing!
I need to thank all the people at Riley who assisted us while we were there. I really appreciated all the DRs and nurses, but there were a few that really stick in my mind. Dr Zeng and Dr Shih, and Dr Pradahan and Dr Knoderer—we really loved this guys! Dr Vik too! There were several interns and such but we can’t remember their names! They were always compassionate, and helpful ,and chatty when they came in. The Last thing one needs is a Dr that looks at you as a statistic and not as a person. Not these guys! They came in, presented what we needed to know, and took the time to chat ALWAYS! Even seeing them in the hallway in passing, they always talked our ear off! And sometimes, even if they weren’t on for that month, they would still make time to stop by and see how things were going. And the 5th floor nurses! I would trust them with my life also! Salli O, Christina W, Denise, Erin, Paul, Audrey, Jackie, Renee, Kathy, Katie, and I know there are others there that I am missing, but they were all wonderful! Not sure what we would have done without them on some days! And Krista and Heather from Child Life and our social worker Stacey D. Thank you all so much for all you had done for us! It was not the same as being at home, but you all made it as bearable as possible!
Seems as though an experience like this tends to make one panic at times. Jeffrey has been slightly sick the last couple of days and of course in my head I had him pegged for the worst. Someday I will figure out how to shut my head off so I don’t panic! Then the other day, he started coughing, and I jumped up, yelling are you ok, with the intent to get him a puke pan, because for whatever reason I thought we were still at Riley and taking chemo! And I was wide awake! Geeze! I remember when we first came home I heard his machines beeping at all hours of the day. Not so much now, but that was an interesting experience regardless.
Again, I want to thank everyone for all their support and assistance during this time! We would haven ever survived as we have without help!
The panic I am talking about up there, it eases but never leaves. I still get all weird if he looks funny or acts or feels funny. I know this far out he should be ok, but that worry is always there. Just as the worry over germs. You have seen that Luvs commercial where when the 2nd baby drops the pacifier the Mom picks is up, licks it and gives it to the baby? That used to be me. Now, if someone sneezes I am looking for Lysol. Old habits die hard. I think I mentioned a few posts back that it took around 22 days for something to become a habit, and after almost a year of avoiding sick people and germs, it is hard to stop at this point. I still keep him from sick people and I have been known to keep him home from school if there are many sick. We ditched the masks several years ago but I carry a small can of Lysol and hand sanitizer with me. Going into the DR office I still dread it because there are always germs in there, not on my account but out of habit to keep it away from him. The beeping monitors I heard forever in my sleep. That finally stopped. I do say though we have had some relatives in the hospital in the years since and I had to suppress my need to shut their monitors off beeping like we did at Riley. I never paid attention to washing hands and stuff but now I sure do. And how fresh food is when you order it. We had to order fresh-cooked for him and to this day we can tell if something is fresh made or not. I am sure maybe somethings there may ease up in time, but who knows.
This is all for today but more posting again tomorrow. I need to get ready for Bible study. Have a great night!