Getting the ball rolling in 2009

Tomorrow is the beginning! The first doctor's appointment of the year. It is with Dr. Campbell, the neurosurgeon; remember him? He's the one who, when a little boy, locked his grandmother out, and ate all the cookies she had bakes, and it was cold out there. He claims the spanking he got was worth it, but I'm wondering if he is remembering all of that correctly. Haha

Next Monday, the 12th is my first IVIG of the year, and I have to tell you I dread it, and am scared. We were unable to access my port last month; what is this month going to bring? They had to press on me so hard that I was sore from it for a couple of weeks. I'm just about ready to say let's just go the vein route like we ended up doing last moth, and not even trying for the port. But it *does* have to be accessed for flushing to prevent infection. Ooooooh me. Not looking forward to all of that. Here is what we did last month. Monday the port worked okay, but Tuesday morning when Terry went to flush it, nothing moved. They removed it from the port and attempted another access with absolutely no success at all. The plunger just sat there. After just a bit of pushing on it, I said for us to just go the vein route, and see what happens. So Julia came and slipped that cannula right into that vein. Think maybe these months of rest have made the veins more acceptable to being stuck and probed? After this success, we left it in the vein the rest of the week until Friday! Why Friday? It blew and bled all over everything while we were getting ready to leave for the hospital, and I do mean it bled every where!! Melissa cleaned that hand and arm up, then Julia came down to stick my right hand, shown here.

Monday, I may let them try the port. Well, no choice. We have to because it has to be flushed. Wonder what happens if we cannot get into it to flush it? Call Dr. Phillips up and tell him we need an oncology nurse to throw the port needle at it? Oooooo, naughty, naughty.

Tomorrow we will schedule the date of the back surgery, which will have to be right after the IVIG so that I keep breathing throughtout, and wake up. Campbell said he is well versed in MG and surgery, as well as having an appropriate anesthesiologist who is, too. I'll just be glad to talk to him tomorrow. I'm sure I'll feel more comfortable, and he will answer a lot of my questions. Whew! Loooong deeeeep breath.

Once the back surgery is over, you are liable to find me cutting the rug just any ole place, but not with just any ole guy, no sirree. Dig us here. You *know* who my man is don't you? Yeah, he's been showing me a good time. He knows how up-tight I am over all that's coming down the road face to face, still another untried. We're dancing the gitters all away. Yeah, from bed to potty! That's now. Just wait until it's all over!

Let go!

Remembering Coleman and Team Larson

So much has gone on since Christmas morning in the lives of the Larsons, it is impossible for me to tell you all of it without getting something wrong for sure. After letting Caden open a few things from Santa they let him choose a couple to take with him as they took Coleman to the ER. It was December 30, when they returned to their unchanged living room as they has left it on Christmas moring. While they were in the ER they called their doctor, and he gave them the option of going home or staying there to be looked over. They knew they could not take him home in his present condition, so Coleman and Peggy got a ride in the helicopter though Coleman never knew anything about it. They were well cared for in Des Moines,De

Peggy: We came home today December 30, 2009, and met with a couple of awesome ladies from hospice, and we went over many options. For now, we are home. That may change, but we want to try it at least. Also Coleman is on a new oral chemo, because…. Well… “Team War-sin NEV-VA divs up.” We aren’t finished yet… we know in our hearts we need to keep praying and trusting in God’s love for Coleman and for us all.

We have a new set of meds to keep Cman comfortable. That's our main goal, we DO NOT want him to be in pain, and so far he doesn’t seem to be. We pray that continues. We’ll take one day at a time and see how everything goes. The one thing, the only thing, that’s for certain right now- God is with us and giving us strength to keep going.

Caden was able to come to the hospital and spend the past few nights with us in the room. It was a wonderful gift to all four be able to spend time together, even if it was in a hospital room.

We’ve been having talks with Caden…I can’t begin to explain how difficult it is to answer his questions, hold him as he sobs, and says he needs to “help Coe-man fight harder.” It brings to mind the quote we have on Coleman’s home page here- "“There's nothing that can help you understand your beliefs more than trying to explain them to an inquisitive child.” -Frank A. Clark
How true it is.

The bond between Caden and Coleman is something we’ve seen all along, and that in itself is hard for us to comprehend at times, yet it’s there. I think we’ve given Caden as much as he can handle each time we talk, and we take his cue of when he needs to quit talking about it & go back to being the bouncy little boy he is.

Peggys next update came earlier today, January 3, 2008. Oh, my goodness. I've lost a son, and I do not know if I could go through all she and Scott are going through, the decisions they are having to make, or not. They truly are living one day, one moment at a time as I have shown here in my own blog, but definitely NOT to this extreme. Could I go day by day and watch and wonder if my five-year-old son is going to see the sun rise tomorrow. We all face that uncertain future, and reality is that today IS our future, but Coleman has specific reasons to make his body vulnerable for questioning tomorrow's sunrise. When Robert died, he was killed instantly, thrown from the vehicle in which he was riding. To the best of our knowledge, he died very near instantly from a broken neck, but that is something we will never know for absolute certaintity, for did the officials tell us that to comfort us, or what. Being a mother, I took it as the truth. That is why I empathyse with Peggy so much. I have written her several times. She and Debbie are the same ages, so it is easy for me to place her with us, or vice versa Debbie in her shoes. THAT is why I want to fight for childhood cancer awareness, and wish I could get my family onboard since we have five eligible ones in our family, with a sixth one coming up.

Now from Peggy's update from today, mainly Peggy and Scott were being unsuccessful at keeping him comfortable, and after the hospice nurse arrived, it was decided to move him to the hospice house where they could access his port and give him some stronger drugs that could do a better job at releiving his pain.

Caden gets to come and go during the daytime, but HE wants to be there with the family at night. I feel so much for him. Peggy posted a couple of pictures which are below, and you can see the furrow in his brow in the one where he is kissing Coleman. There is truly an unspeakable bond between the twins, and the doctors have spoken of it from time to time as the best medicine Coleman could be getting.

It is my prayer that God will bring an unspeakable peace to the Larson fa\mily to get them from one moment to the next. When I chose that picture I had more in mind, but it has escaped me at the moment, except for that which I have spoken. Peace, real peace; joy, real joy. Most miss out on this from our true Christmas truth, that it is not Christ's birthday as we think of birthdays as a date on the calendar. I don't know why this picture struck me so for them, but what? Peggy has spoken all along about the Peace that Jesus has given them, and this, to me, reflects that peace. The artist, to me, did a great rendition. Is it God wrapped around them, holding them safely in His arms? I don't know. The longer you look at it, the more you can read it.

We are praying for Coleman's life, and for a cure for his cancer. We are also working for the awareness of the devastating effects of childhood cancer in all of our children. The majority of people are not aware. There are some things I can and want to do, but my station in bed is crimping my style to get them printed. I HAVE to figure a way to get it done from here, and need to do it today!! It will have to be over the pain, but what better way than to do something for someone else to rise above the stinking ole pain that I get so tired of battling. Look forward to try to help someone else.

I'm selfish, too, in that I use my digital graphics in my blog presentations. They are a HUGE pare of me, just as my music was. At times I want to do nothing but digital graphics, working my way back up to be able to use my hands with other mediums. While I was making the following text, "We love you Coleman," I just happened to remember how to do something with the vector text box, as you see I have done here. Maybe not the most austute, but another return of a bit of my knowledge. Just the how snapped in my memory. So, we love you Coleman, and "I" am happy with the work I did with the pictures, and this is why Coleman says, "NEV-VA div up," and why, though in hospice house, they are still trying an oral chemo drug on him, still looking for a cure, and continued life for this five-year-old little boy who has stolen so many people's hearts, least of all, mine! But, especially his five-year-old twin brother. Those hearts grew together, and they have lived together since this monster hit Coleman when he was only 2 1/2 years old.

Be sure and play the Coleman and Caden - Brothers YouTube on the sidebar, made by Lizz. You'll be blessed.

Goodbye 2008 - hello 2009

I just figured out why I've been procrastinating with this next post which is supposed to be the day after the last one which was December 27th, and it was a shorty itself. Mercy, look at the difference in the dates. Unforgivable, absolutely unforgivable. The way I have been feeling is no excuse. Not an excuse. Not even though I totally missed Christmas because I was so sick, and Debbie and Mark brought us a plate of food over, and we just doled gift cards out, and gifts in store bags. Ha! I never even saw anything. Couldn't even care at the time ::shhh, that is "at the time," not now:: Missed the baby's first real Christmas, and they said he had a ball. Reminds me, I've got to text to have some pix sent to me. Got some others, but really now, nothing beats pix of the babies does it?

Hmmm, well, maybe I really don't have it figured out after all. It is so hard to put things together when you are just so blah. Well, maybe it's a bit more than just a bit blah. After last year of wait, wait, and wait some more where Jim's surgery was concerned, I think I am almost afraid to even begin to think of beginning this year since the first major thing on the slate is the back surgery. I want it, need it, but am so scared of it because of the risk with the MG. Campbell says he's well versed in surgery with the MG patient. All I can do is to trust him. What else is there? Hey, I'm just repeating myself, but that is partially where I am, and why I am having trouble getting started up again after that awful time with the last treatment. An excuse? Let's not drop down, and start relying on times like that. It wasn't the first, and won't be the last, will it now?

Okay, here is the group of them, sans us. Yeah, I feel it. It hurts. I don't want to get going post-holidays because I don't want to feel anything. Just lie here, and let the pain define me. Nah, you know better than that. That is not me. I'm going to give you this now, and then get on and see what I can do. Can do. That is action. Not passive. There are a few things I have working right now.

I *do* have to log in this severe pain I am experiencing, which I do not believe has anything to do with the IVIG treatments, the next one coming up in ten days. Okay, that is done. Look now at this fine family. There is Debbie and Mark, then Christen - remember when she got her lip busted during softball?-holding Ashton - well, he's been all over the place; Donnie and Jimbo, who took such good care of Jim following his da Vinci surgery, both of them; then Ashley, flittering about, trying to find her place in life, which she is still doing.

Boy, I wish hair styles had been this simple when I was younger!

Goodbye 2008 - hello 2009

WHEW! IVIG and Lithotripsy are a pair but done!

The IVIG started late on December 15th, and turned out to be a pretty rough week of it. The lithotrypsy was a real doosey that set me back, waaaaay back, and I am still coming back, even when I thought I was coming back. I was about to text my sister this morning that I was doing better, and then, ohhhhhhhhhh untangle yourself and understand how badly I feel. Awwwww. Now. That feels better. I have been trying so hard to compose this blog, but there is no way I can get it done, so I am posting it just with the "girls" pictures, and no explanations of the week I had. Went and got my hair done before I left on Sunday, and that probably helped somewhat.

However, I am not doing well at all. It is talking me days to compose and post this.I know nothig about the back surgery coming up. I will keep you updated as best as I can. I still have my humor!! Jim and I cannot do without that!

After the nurses' Christmas party, they came tripsying into my room bouncing and singing, these caps on their heads, laughing. We took some pictures. I was Rudolph. Aren't we silly?



For now, good-bye for a while so I can can take care of myself. When I feel able to post again, I will do so.

Lithotripsy - Nothing to eat or drink!

The day is finally here. Putt, putt out to the trailer in 11 degree weather outside the warmth of the hospital.

Brrrrr...... I'll have to wrap up warmly this time for the few feet I'll be outside. I'll bet I'll be one of the few patients who has made that trek the most times, and I STILL will not be done blasting those stones away, just hitting the largest one, the one a size of a dime today in hopes that will be sufficient for the go-ahead for the back surgery.

Who in their right mind would be anxious for back surgery? Anyone who might be looking at less pain, better walking and stability, and a myriad of similar things. Please just bare with me as I recover from my IVIG last week, and this today, Christmas, and then I hope to be back on track once again!

Just in case I do not get another post in here before Christmas, here is my Christmas wish for you, and I do hope you have a good one with LOVE flowing all around with those whom you love.

IVIG finishes in about an hour, then HOME!

WOW!! What a week! I am ready to get through with this drip, and get headed home toward Blytheville! Just as quickly as I can, I will be updating here.

See you real soon.

I quit!

Well, I would quit if I could, but with a diagnosis of Myasthenia Gravis, severe neuropathy, and a ruptured disc, I don't guess I have much say-so over very much. Tomorrow is my appointmet with Latif, my diabetic doctor. All I want to do is go the other direction to Jonesboro, to St. Bernard's Hospital and start my IVIG treatment NOW.

I guess this is the way it is going to be until we leave Sunday. There are a few things I can try, and will use them for the trip tomorrow. Alas. As before, I WILL endure. I WILL make it. Like it? Not in the least. It just will not be the most pleasant time, but for how long have I been coping with these diseases? My feet, especially the left one hurt so bad it had me back to the tears again this afteroon. A little med helped, and then while eating, I remembered I forgot to replace my patch the other day when I took it off. THAT will make a big difference right there, and I will get it on just as soon as I finish here. In fact, I stopped and put it on right now. Done. See you later.

Are the IVIG side effects worth the treatments?

A resounding YES!

The fact that I am doing this is evidence within itself.

The fact that I have the energy to become involved with outside interests such as Coleman Larson and Childhood Cancer is another.

The fact that I have the energy to email some again is reason enough.

There again, fact that I have the energy to join up with Twitter and Facebook is reason enough, though it does tire me to *talk* to people in their respective groups. :::sigh::: The fact that I am doing this increasingly is another BIG reason!

See what I mean? None of these are all of the time, and actually doing them weakens me.

Yes, there have been ups and down within the past year, with mostly many ups these past six months since we have been pushing the IVIG infusion rate to eight hours, and now to six hours last month. I'd really like for them to analyze that as to why I started to do MUCH better whenever I started taking it at a faster rate. The headaches were worse, duration was shorter but more severe. Let's see, the last one started three weeks ago Monday, and the side effects are definitely waning, and I can see the improvement in the way I am feeling.


IF I could walk, I *think* I could live somewhat normally, AND they are feeling that my impaired walking is possibly due to the ruptured disk, and NOT the myasthenia. None of this is going to get definite answers until after the back surgery, and I am very hopeful for some improvement following that, as I think Dr. Cauli is, too. As Dr. Campbell said, they normally would not recommend surgery on someone my age, with my multiple physical problems, and with the danger of the MG added to the pot unless they felt it would make a significant difference.


So exactly what are they looking at improving? Bladder and bowel functions, neck and spinal pain, arm pain and weakness, and to me, the best of all..... leg pain and weakness with the hope of at least walking somewhat better once again. Wow! If I were able to be up and about within the house, it would be a dream come true.


It would mean reaching down that road to remission!! Remission meaning to me reaching toward a life of normalcy, normalcy being able to function in the world as most people do..... walking and doing most things for themselves. Ha! Getting up and getting a drink for themselves rather than needing to have someone else to do it for them. Maybe even preparing a simple meal for themselves. Oh, wowie! Would that not be grand. I might could even clean my house!! Listen to me! I go bananas thinking of the possibilities. At one time I thought I never wanted to have a surgery of any kind ever again, but now I am thinking of it differently. At one time - yesterday - I even thought I'd never walk again. What? Maybe. The possibility is in the air now. Am I prepared to be disappoined since the surgery is not a 100% guaranteed. Well, Jim's cancer surgery was not guaranteed either. No surgery is guaranteed. And surely Brenda's two surgeries were not guaranteed, and now her CTs say she is Cancer Free! Both of them. Everything points to HOPE.


My best Christmas present probably after Christmas, I guess, would be the successful back surgery. I'd like to have it just after my IVIG coming up this month. That's just me without considering others. Ummm maybe I should put a poll up here. I'll think about it. Just to see what others think.


I've got to run along now and get Coleman's update posted. Make-A-Wish came to visit him last week! Wait until you see!!!

Coleman in front

Michelle & Lori of Make-A-Wish Foundation
(I don't know which is which ;-)

No lithotripsy afterall

What a mess. We *did* make it to Jonesboro for my appointment with Cauli yesterday, but we might as well have stayed home. It was strictly a check-up to see how I was coming along, and no changes were made at all; we're keeping the status quo until after the back surgery.

Yes, the back surgery. What about it? After the lithotripsy right? Well, I had to cancel it for today. I am a horrible mess. When I told Cauli about the episode with my feet and legs from night before last, he said "Get that surgery soon!" So, he is thinking a LOT of my pain and problems is coming from my back. Campbell, my back neurosurgeon, wanted me to get the stones taken care of prior to his surgery, but I am having an MG episode (not a full crisis) and have had to cancel today's procedure to blast the dime size stone in the left kidney. Things would have been more hopeful if I had not had to make the trip to Jonesboro yesterday. I slept all the way over there, felt too bad to stop at the mall for some socks for my new black shoes (Sandra, Cauli's nurse got on to me for being sockless) and a couple of other things seriously needed. Now, for ME to say I do not feel like stopping by the mall, or just going into Dillard's, that is a VERY good reason to suspect I am not feeling well at all. My throat hurt so we went by Sonic to get an ice cream of some sort. They didn't show the new banana shake we have here, but then I remembered their coffee drinks. Their latte is actually pretty good, and they have an iced latte, but I was not sure if I would like it or not. So, this is what I did, I got my usual hot one, but got the smaller iced one to try it out. It was good, but just not enough of it for the cost. There is another one that I cannot remember the name of it that I want to try the next time.

Okay, this is as much as I can do. I've been asleep, and just now woke. No way could I have tolerated the lith today. I'll sure let you know what all is going on whenever I know what's going one.

Back out again

I don't what the deal is, but I am back down again. Very easily could be the stress of having an appointment with Cauli in Jonesboro tomorrow, and then the lithotripsy Friday in Memphis. Whatever it is, I'm just a-feeling poorly today with it hurting to sit up straight, but..... that is the way I am suppossed to stay all the time. Bummer!! I've got to go looking for something to cheer this up, and maybe at the same time, it will cheer me, too.

It very well could be that I might be suffering from the same thing that happened to this poor fellow right here. Final diagnosis has not been rendered yet, but I have a suspicious feeling he and I suffer from a similar disease, and I don't bellieve it is MG.