Sunday

Hi y’all!  We didn’t walk today, mostly because we need a day to recover and it is church today.  I teach Sunday school in the morning and church starts about the time we would be walking.  We also start another Bible study this week so that should be interesting.

Back to walking tomorrow and the hope to get a bunch of stuff around the house done.  Being in school I tend to let things get behind.  It seems worse working on a Master’s degree.  I have no time but to work on that and to do the necessary stuff like pay bills and laundry and grocery shop.  But I plan on catching everything up this week and in the following weeks.

Yesterday we went to Wal-Mart and I had to go ahead and buy some new plates and forks.  They tend to disappear to my daughter’s room.  I am not sure what she does with them.  They are there, then gone, and then gone from her room.  I think we have a plate monster or she is eating them.  Either way I bought some new ones.  I like the Corelle lighter weight plates.  I also have a thing about matching stuff. I prefer it mismatched.  It matches my life and personality that way.  Or maybe it just expresses what a goof I am.

I do have one complete set of Corelle still in the box.  It has the plates, salad plates, cups and saucers. I just don’t have the desire to open it and lose pieces of it.  (You reading this Annie?)  Now I am not as bad as those people with the Christmas presents.  You know those people–everyone has one or two in the family.  They keep wearing the same jacket, or shoes or whatever and it is falling apart or has holes in it.  You know they have a new one because you see it when you pass their room. And you also know they have a new coat or whatever from 1973, 1958, and almost each successive year since, still new and packaged up and in the same condition it was in as the day they got it.  You also know they won’t wear it.  The excuse is they are saving it for a special occasion or for when what they have is worn out.  Hello-the stuff you have has holes or worse!  You know who I mean here!   I told my uncle that once not too long ago and he went digging for something and came and told me later that he believed I was right because he found undershirts from the 80s still in the packaging.  The point is, I am not trying to gift-horde them but I just don’t want to lose the only complete set I have.  Corelle dishes are expensive!  The set I have I found at a store closing sale but they still weren’t cheap.

With summer coming and school out,  I have several things to look forward to.  The highlight coming quick is the Rob Thomas concert next month.  My daughter scored 2nd row seats!  I cannot wait!  Rob is one of my favorites.  I have loved matchbox twenty since they came out and that of course means I love him as a solo artist as well. I am still in shock and I get a little more excited every day because it is getting closer and closer.  I have always been a huge fan.  My brother says that if I ever got to meet him I would get to keep his shoes as a souvenir because I would puke on them.  Well, maybe.  I have determined 2nd row back will be bad enough and for Annie to tape my reaction when he comes out.  I am sure it will be Comedy Channel worthy.  I of course love Maroon 5.  I have seen matchbox twenty before and when they were touring Maroon 5 was touring with them so I have seen them twice now.  That was my Christmas present this year.  I have determined that I love Adam Levine as much as I do Rob so getting to see them again was awesome.  Maroon 5 just has good music.  I love to listen to them a lot when we walk and Rob and matchbox twenty too.  We had pretty good seats for Maroon 5.  We hope to catch them again too when they come around again.  We may get lucky with a meet and greet too.  Pretty good seats but the camera I had didn’t do the view justice.  We were way closer than the camera shows.  Awesome show regardless!

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As I have been doing all week, here is another post or a few from the blog I wrote when Jeffrey was sick.
There aren’t too many more left.  The last one in the line here, and you can see where they stop and start because I believe at the end I thank everyone for their love and support, it was one of the most important and revealing ones I have written.  I hope it helps to make sense as far as how parents see these things.

Hello all!  Sorry I haven’t updated in a while.  There has been nothing much to speak of because he had been doing well and we had gone home.  Didn’t think anyone wanted to read about 10 days of scratching the dog and cat!  Ha! 

On Monday we had an appointment for a bone marrow aspirate at 11AM.  We show up on time, and find out that our appointment was scheduled at 8AM and for some reason there was a scheduling mix up.  We waited and got the test done around 2PM.  We were allowed this time to go in the room with him.  It was interesting to see what they were doing, and the vials of bone marrow look like vials of blood.  We were to be admitted since his ANC had climbed up to 2800, and it needed to be at 750 minimum to start chemo again.  Disappointing because we really REALLY wanted to spend some more time at home, but good because his body was rebuilding well after the chemo!  Had we been able to go home it would have meant his body hadn’t recovered as fast from the last round of chemo.  Talk about a catch 22!  But on a happy note, we are all glad we are getting the chemo started, because the faster we get it done, the faster we can be on the road to living a normal life again!  I have been told life will never be “normal” again, but as long as we can have something that resembles what we had before the diagnosis, that would be great.   

OK, anyway we were supposed to be readmitted on Monday so we could start chemo.  There was for some reason no way there were any beds open.  So we stayed in the Methodist Tower and that was an interesting evening!  We ate pizza, slept well, and came back over the next morning to the outpatient center and went ahead and got his chemo going.  We had a bed that evening.  We changed rooms the next day but that is ok.  We are in 5120. 

Now for the other information.  Jeffrey’s bone marrow tests show him to be in REMISSION!  Yes that is correct!  That is the best news I have ever received!  We have to keep up with the next treatments of chemo, in order to get rid of the leukemia cells that may be there that cannot be seen and are hidden for some reason. 

I am going to post more information about his treatments and things later.  But I wanted to convey the most important information of all and that is he is in remission!

Hello I am back!  His chemo this time runs for 8 days instead of 10.  He will have Cytarabine every day for the 8 days.  He will have Daunorubicin for 3 of these days, and the etopiside as well for 5 days I believe.  The Daunorubicin is the hardest.  It tends to make him sicker than the rest of it.  It seems though this time he was sick from the beginning unlike the first time, when it took a few days for it to hit him.  He is still eating though, and hitting the Playstation hard!  He weighed approximately 92 pounds when we got here in December, and now he weights around 90 pounds so he hasn’t lost too much.  We will keep the snacks coming, if that is what it takes to get him to eat!  He has been eating cheesesticks and pizza, and some Long John Silver’s.  His ANC has fell from 2800 when we came in to 1995 today, which that is the number that tells us what his immune system is doing and how the chemo is affecting him.  Now don’t everyone panic!  The numbers MUST go to 0 and fluctuate up and down, and this is normal!  If it would not, then there may be something wrong, and we want the chemo to work as it should, and the fluctuation shows that the chemo is working as it should.    Otherwise it will take about the same amount of time for his immune system to build up and we don’t want him to walk out of here without that building.  He would be more susceptible to getting a serious illness, and that would not be good!   As much as he and I and Derek want to be home, we are here to be sure he is well, and when he is well, we will be home for a period of time again!  After this time there are 3 more rounds of chemo.  The days on them may change but if I have understood correctly the amount and types of the chemo should remain about the same, until the very last dose.  It will be 2 days of chemo, skip 2 days, then 2 more days of chemo, and it will be stronger than the rest.  

We haven’t received the results yet of our DNA typing.  Derek and I had blood drawn the day we came home to see if in the future, if there was a need for a bone marrow transplant, if either him or myself would be a match for Jeffrey.  The results of that aren’t back yet, but  I will let everyone know when they are.  If we aren’t a match, then we would type his sister, and if she wasn’t a match, if a transplant was needed, then we would have to go to the national registry.  But we are going to hope that we will not need a transplant at any point in time! 

As everyone knows, these last few weeks/month have been very stressful on all of us, in more ways than anyone would ever be able to imagine.  We appreciate so much all the love, support and prayers, more than anyone will ever know.  We thank you all from our hearts!

Hello again!  It is snowy here today!  But hopefully that will clear up by the time we get ready to come home. 

Last week Jeffrey passed out Valentines and candy to all the nurses and patients on the floor.  In face we ran out and had to get more!  He finally did get one to everyone.  Last week was an ok week.  We knew his numbers were falling and was fighting being tired every step of the way.  This only created some issues that we worked out as far as behaving goes.  Sunday he finally admitted to us that he was tired. 

This morning about 1:30AM he sprouted a fever.  We knew he would get one eventually, and figured his numbers had finally fell to 0 or he is fighting a bug.  He had a lab drawn and they started him on antibiotics.  We will know his lab results in a day or so as far as what may be there today.  His blood pressure was monitored as well as all his vitals.  We had a DR or nurse in the room with us until early morning, monitoring all of his vitals, answering my incessant questions, and trying to convince me to go back to bed for a while! ( I don’t mean that the way it sounds.  They have all been wonderful answering everything no matter what it is I asked.  But they did determine we both needed to sleep, and tried to get me to do such after he went to sleep!)  His blood pressure dropped, and the DR ordered an EKG due to an irregularity seen that was connected with his heart rhythm.  He also has to have Tylenol and Benadryl started before the antibiotic, because it tends to break him out.  He slept well all morning.  The results came back from EKG.  They believe his blood pressure is ok, because after reviewing his regular night time blood pressures, it tends to run a little lower.  The rhythm on his heart is ok at this point.  They said other people have these types of things and are generally ok with them, but to let them know if he had any issues or wasn’t feeling well with anything connected with his heart.  His fever hit 104 around 11AM, but he ate lunch and is now sleeping, and will get more antibiotics around 2-3PM. 

Don’t anyone panic here!  We knew he was going to have a fever, they knew the antibiotic has a tendency to drop blood pressures when given.  The fever is a good sign though.  The best way I can explain that is that once your immune system is down to 0, your body will get a fever trying to rebuild itself.  This is normal!!  This also means the chemo is doing exactly what it is supposed to, and that is what we want to hear!  Again, don’t anyone have a spazz over what I have typed!  I haven’t informed many yet as to what is going on today, because I wanted to be sure all was well, as I have been reassured of many many times today, and I wanted to be able to convey the correct information when I shared it.   

Otherwise, all is well.  There are plenty of activities for him to participate in, his schooling is going well here, and he is starting to make friends with some of the other kids on the floor.  We are surrounded with some of the best nurses and DRs anywhere, and we know things are going as well as can be expected! 

Hope everyone has a great day playing out in the snow!  Be careful if you are out and about!

Hello everyone!  We are loving these warmer days and even the rain!  Amazing Indy smells so clean after the rain but it does.  I don’t update this as frequently as I probably should, but sometimes I don’t have much to report, other than numbers dropping or blood being given, and I figured making one big entry may be the way to go for now. 

 

As most of you know we only had 2 days home between round 2 and 3.  This has caused many issues as far as how Jeffrey has been acting, and I can’t say I blame him!  But there comes a time when we need to do as instructed as far as taking our daily medications.  He has finally come around and has begun taking it as he had been doing.  One is the Strattera, and he needs that daily.  The other is fluconazole, which is supposed to help him in case he eats something that may have bacteria in it.  We figure he is trying to control what he can, since we are sure he feels like he has no control over anything else. 

 

When we got back the first thing that happened was the bone marrow test, which still shows him in remission!  Thank God!  That result keeps the doctors from being terribly concerned with how fast he rebuilt after round 2.  If he wasn’t showing in remission, they would be more concerned and who knows what that would entail.  I am not sure if there is even a level of remission that can be seen from the tests, but I don’t want to open that can of worms.  Anyway we got to go in again when they did the bone marrow test.  The test itself didn’t bother me, what bothered me was when he sat up mid-test crying for me and asking for him Mommy.  That about tore me up.  They all told him I was there, I told him I was there, but there was nothing I could do, which has brought me to how I feel, or partially how I feel about his leukemia diagnosis. 

 

A lot of people have asked me how do I feel, what do I think.  I can’t tell anyone.  I never will be able to formulate into words the feelings I have, nor would I want to if I could.  But for those who are curious, I can give a close description.  I wish I could do it for him.  All his life, I, Dad, Grandmas, Aunts, Uncles, or someone, has always helped him.  I have helped him with schoolwork, picking things out, putting things together, etc.  This isn’t as simple as that.  I sure wish it was.  I should be the one taking the chemo for him, so I can ensure the leukemia goes away and never comes back, but I can’t.  I am totally helpless as far as doing it to help him or for him.  It isn’t as easy this time as going to the store to pick up some sinus medication, or rubbing his leg because it hurts, or going to the school to see if I can find out what is causing issues and working on a solution.  It is so not as easy as picking up the phone and making a phone call and to help with whatever issue he may have.  It isn’t that easy, and it is very frustrating.  We have done the only thing we can do as parents in this case and that is getting him to one of the best facilities in the world to take care of the leukemia.  Some days I get up here at the hospital and I am fine, things are looking good.  Midway through I have noticed that the fear of what could be tends to creep up on you because in my case, I have tried so hard to concentrate on the positive and to shut out the fear of the unknown.  Now, I have been swirling in nightmares and having days where I just feel off.  Some days I wake up sad, in fear, and I have to go on.  I try not to let him know all that, because he can feel it.  Other days I wake up happy, knowing that the doctors are quite happy with how things are going, and when we get close to going home, I start getting all giddy with that prospect, as does he!  It is a constant swirl of emotions.  I don’t think it is necessarily the fear of the unknown as much as the realization at times of the facts.  But as long as I stay focused on the positive, or at least keep heading myself in that direction, most of the days here are ok.  Other times I wonder where in the world did this come from?  THAT is the thing that I will never, ever get over.  I carried him for 9 months, was it something that came from me or his Dad?  Was something defective somewhere that no one knew about until now?  Why why and WHY?  I keep asking these things and I have no answers.  In order for me to be able to proceed, I have to keep looking to the positive, the day we can go home CANCER FREE!  Otherwise I would be an emotional mess, as I tend to slip into every so often.  I am sorry if I have rambled on and on about things.  He will overcome this!  I won’t settle for anything less and neither will he!

 

He finally opened up to me a little last week about how he feels about things.  He is just like his Dad and I, not wanting to really talk about things and basically just trying to deal with the issues within on his own.  He says he has not been scared at all during this, just a little worried at times.  He told me how it felt to get chemo as well.  He said that sometimes it made him light headed, and so did the blood transfusions.  He said the chemo does the same thing to him that eating foods that give him a “high”, if you will, like sugar or something, and that in general it just “feels funny.”  I was so glad he opened up and talked to me about this a little!  I/we had been trying for a long time to get him to share how he feels about it.  He knows he has cancer, and says he does, but with no hesitation, as if he has always had it and has dealt with it for years.  He has never cursed it (he isn’t bad about talking like that anyway), and he has never said things that would make someone think that he thought was doomed or anything.  He seems to be dealing with it well so far, or as well as a 10 year old can be dealing with having leukemia anyway.  I am so thankful he has a positive attitude, as this has helped him so much!  He has gone to school every day, and attends all the activities and play times with the child life crew.  He got to host bingo again last week, and boy does he love that!  I have pictures I will post as soon as I get them on the computer.  

 

Back to the update from this admission–after the bone marrow test we were readmitted, got back into our very first room we had when we got here in December.  Thank goodness, as it appears to be one of the biggest on the floor.  Seems like the 5 days of chemo flew by, but they also seem to have been rougher.  I think I have talked about this before but as time goes on, his bone marrow will wear down and get tired.   And when it gets tired, the chemo is harder on him because it takes his system longer to rebuild and be healthy enough again to deal with the chemo.  He was violently ill most days with the chemo.  But on the good side, his numbers are taking longer to fall.  We are in the 190s today, and last week we were still hovering in the 2000s.  Again, they weren’t too concerned at this time, because at first the numbers were in the 1000s and rose up in the 2000s right after chemo was done this time before finally dropping, but since he is in remission they weren’t too fired up over it.  I hope they take a while to climb back up, since none of us had the chance to wind down at home between rounds, and I think as I said above that it has affected him badly.  He had to have platelets last week, and he had 2 bags of blood today.  He seems to be feeling good, no puking for around 7 days now and running all over the hospital with me!  Now we just wait. 

 

There have been so many people from home who have gone out of their way to help us during this difficult time!  I want to thank everyone for all they have done for us!  You all have no idea how good it feels to know that people from home are showing their love and support in any way they can!  THANK YOU ALL! 

That is all I have for now.  I always have something to talk about but this change in diet and apparently what has caused the lifestyle changes have made me go from feeling like I am seriously tired to feeling seriously starving.  I am going to have to sort these things through.  I hope everyone has a good night and great dreams, or at least ones that can take one’s mind off the humdrum of everyday mundane things.  🙂

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