'Sprinkles'

Just a quick update, we had a consult with the nurse at the oncologist's office this morning... She's so nice. Ashley has been having just an awful time taking the Depakene syrup,.. she really hates it, and it seems to irritate her throat... I'm sure it must just taste awful. None of us can see making her go through that so they were able to easily switch her to Depakote capsules instead. I'll pick them up from the pharmacy this afternoon. These, we'll be able to pull apart and then dump the contents, lovingly called by the staff as "sprinkles", into pudding cups for her. This will also be nice for when we are away from home,.. we can easily take snackpacks with us, and I'll be thrilled not to have sticky syrup residue everywhere, LOL. Now her ladybug backpack will have a daily purpose instead of just for going to appointments... now it will go with us wherever we go, carrying her snackpacks & 'sprinkles'.

New bone growth!

Hello All. Ashley is doing alright. Her eye pain is increasing again, but somehow I anticipated it would. Overall though, she's doing okay.

Brittney saw her orthopedic surgeon this afternoon for a follow-up. She's been doing well. Today's x-rays indeed showed new bone growth already repairing the break, just as he had said we'd see at this point. It was kind of neat to see. Anyway, she can stop wearing the sling, unless her arm starts to get sore, then we should put it back on, along with taking a dose of Tylenol, until it feels better again, but for the most part, she's free from the sling so she's pretty happy about that. She still has to keep it protected for at least the next month, but he would rather the next two months,.. no doing anything that could pose risk to reinjurying the arm because he said it would just snap it again, and she'd have to go through rehealing her broken arm all over again. She didn't much like the sound of that, so she promised to be careful. She's still having difficulty coming to terms with the fact that she can't ride her quad the whole summer, but worse than that, she's having a harder time with not being allowed to swing on the backyard swingset,.. one of her favorite passtimes, but the doctor said nope. She goes back for another follow-up in 6 weeks.

We're still taking it one day at a time,.. and we thank you all for your support & prayers, as always!

Well, We hope everyone has a great holiday weekend. We will be camping in the mountains again,.. it's always such a nice break from everything. We'll get to spend 4 days & 5 nights this trip, and so we are really looking forward to it. Nice to get away and just 'breathe' once in awhile.
Ya'll have a safe & happy 4th of July. (((hugs)))

Happy Hyster!

Just a Happy 2-year 'Hyster'versary to my darling friend, Andrea!!

Hyster-versary

Today marks 2 years since I had my hysterectomy,.. I can't believe it's already been that long. My quality of life has soared since my surgery. It was a difficult thing to face and go through, but it was certainly worth it in the long run. I don't have much else to say about it, but for me,.. this is a special day.

Embrace Grace...

I came across something this morning in one of my favorite books, 'God Always Has A Plan B - For Women',.. given to me a couple of years ago, when I went through my hysterectomy, by my friend, Andrea, my dear, dear friend that I talked to you about yesterday. I loved it so much that I gave a copy to her when she had her's the following week. I have since given copies to other friends, too. I enjoy going through it often, and highly reccommend it to anyone who is in need of inspiration. It's an awesome book. Anyway, thumbing through it again this morning, I came across this great passage that I had marked before,.. I thought I'd like to share it so that's why I'm posting it here today.

LAUGHING WITH THE LORD by Barbara Johnson
'Are you going through a difficult struggle? Sit down and hold God's gift in your lap. Slowly untie the ribbons. Now remove the lid on the box. Reach beneath the tissue paper. It's party time! In the middle of your trial, God has prepared a celebration. Jesus triumphed over the worst, and now he will help you to do the same.
'How will he do it? In a way you didn't expect. Jesus knows about everything you're going through, and he has made arrangements for you to look back on it---and laugh. He is going to bring you laughter and liberty into your circumstances. Wherever Jesus is, there's a party going on.
'No, life won't ever be perfect. Even in the land of milk and honey you can get kicked by a cow or stung by a bee. But when that happens, you can laugh with the Lord by your side and say with him, "Been there. Done that!"
Embrace grace.'


Also, I got Ashley's neurology follow-up appointment scheduled this afternoon. It worked out to do it the same day as her next oncology follow-up, and they are both in the same building at Emanuel's Children's Hospital so we will see her oncologist at 9:30 AM, and then take a short elevator ride up two floors to see her neurologist at 11:30 AM... and just one drive for the two appointments so that definitely works for me!!
Oh, please also continue to keep Scott's mom, whom is Ashley's Grandma Carol, in your prayers, too, as her CH125 count is going back up,.. went from 11 to 23 in just a couple months, and she says they will likely be talking starting chemotherapy for her ovarian cancer again next month. Let's lift her up high!

Another long day...

Well, another long day, but well spent. We got the results back on all of Ashley's tests. Monday's MRI, on her brain, shows no new changes. He said that the right eye's tumor is close to the chiasm, but that it was before (this I didn't know,.. I thought it wasn't even close before, but I might have misunderstood as there is always a lot of information to digest). The chiasm is the part where the right & left optic nerves cross. Anyway, both the left & right tumors apparently still look about the same, which is good. No sudden rapid growth, or invasion. The MRA did show something, but they are unsure whether it is really something or not. Our oncologist is skeptical about that, and feels that there is a good chance that this could be what is causing Ashley's eye pain. The MRA, which with the use of injected dye, scans the blood vessels & arteries for signs of collective blood,.. it's sort of bulgy in a section on the right side, near the tumor, and so that swelling could mean that the tumor is somehow pinching, or causing spasms. He is going to go over it thoroughly with the radiology team, and they will decide whether they feel they should repeat another MRA at the next MRI appointment. For now, we will continue using the Depicote (the anti-seizure medication), and see if it will help with her symptoms. If it does, then we would continue with that, however it there isn't a significant enough remedy, and it is confirmed that without a doubt there is a genuine effect from the tumors that is causing the pain, then we would procede with chemotherapy. It is still going to be used as a last result, and only if it is confidently felt that it would be beneficial to do so, of course. That decision has been confirmed by his collegues that he consulted with at the conference in Boston earlier this week. They too, had nothing to offer for opinion, or suggestion, on what this is, other than migrain... Ashley's case seems pretty rare. He even consulted with the doctor who actually has the largest amount of patients in the country, that have optic nerve gliomas, and even he has not seen this in relation to the NF tumors before, and was puzzled. They are suspicious of migrain relations, but our oncologist is still leaning also towards this finding on her MRA now. She has also started to show sensitivity to light at times, and especially in the right eye, which is suspectful of migrains also,.. but again that could all be from a constriction from that tumor, too. The lab work for the Liver Function Test came back with excellent results, and so it does not need to be repeated for awhile. He feels that we can wait to do it at the next MRI again, which is nice because then she doesn't even know they are doing it. Speaking of the next MRI,.. the next one will be in another 10 weeks, at the beginning of September. He was going to go ahead and start doing them every 2 months instead of the 3 month intervals, but then decided to meet in the middle and go every 2 1/2 months. That would leave the following one after that for around the middle of November then, too, which will make 7 MRIs for the year. She shouldn't need to have another spinal until at least next January, but the brain scans will be quite frequent as I already mentioned. Her spinal MRI was clear with no tumors, thank goodness. Ashley is to see the opthalmologist again on Monday, July 19th, a month from now, and then she will see the oncologist again the following Monday, July 26th. I am also supposed to schedule an appointment with her neurologist for her 6-month check-in with him, for next month (July) also. The oncologist also wants me to document any of the especially severe episodes,.. particularly ones that wake her in the night. The rest he said we don't need to bother trying to keep up with,.. we already know that we can't really pinpoint anything surrounding those since I journaled on them for awhile already.

Anyway, that's where we're at on that. On the way out, we took a couple of minutes to walk through the Children's Garden again,.. the girls all really enjoy that. I do, too. Next, we headed across the river to see friends... one of my very dearest friends & her family. The girls had a wonderful time getting to play with the other kids & their puppies, and I got to sort of unload some of my 'stuff' with my friend & her husband,.. let me tell you, they are both such tremendous friends that I just don't know what I'd do without them. They have been so supportive & I know she is always right there for me. Andrea, you're like a sister to me, and one of my very best friends... you're such an amazing friend!!

The girls & I stopped off for dinner @ Denny's on the way home, and that was fun. They pretty well slept through rush-hour traffic most of the way... wasn't too-too bad, about a little over an hour and a half. We got home just after 7:00 PM, this evening. Pretty tired though, and so we're off to bed.

Brittney has a follow-up with her orthopedic surgeon next week for her arm. They'll x-ray again, too. She's doing pretty well... getting tired of the sling though, and frustrated more than anything. She very rarely complains of pain,.. mostly just about all the things she still can't do right now, but all in all she's been being a real trooper. Probably handling it a lot better than I would, LOL.

Thanks again to everyone for all of the prayers and the support. We are grateful for each & every one of you!!

A long, LONG day...

Well, we got through today... a very long, long day. I am so tired I can hardly see straight. Daddy had to work today so Grandma came down to babysit the other two girls while Ashley & I went back for today's MRI. Unfortunately, Grandma didn't hear me this morning when I said that Ashley couldn't have anything to eat or drink, and at 8:30 AM she let Ashley have a package of fruit snackies while I was finishing getting us ready to load up... Oops! Honest mistake, and I was hoping it wouldn't end up being too big of a deal, but it was.

When we got to the hospital at 10:00 AM, I told them about it, and the anesthesiologist said we couldn't do it. We need the results back in time for our appointment with our oncologist on Thursday, and so they strongly reccommended that we stay & wait. We had to wait at least three hours, and they happened to have a time slot open in 4 hours. That was so hard,.. Ashley had already started getting hungry at that point, let alone having to wait another 4 hours just to do the scan, and then would be another 2 hours beyond that before she could eat anything.

She ended up not getting to eat anything until about 5:00 PM. I did my best to keep her occupied & distracted, but how much can you really do in a hospital for hours & hours,... so, we watched some cartoons, and then we went for a walk. We walked through the Children's Garden outside for awhile, and that was nice,.. then, we went to the gift shop and Ashley picked out a pretty butterfly mylar balloon, and we tied it to her stroller. Next, we walked around the hospital, up & down all the hallways, but about that time it was lunchtime, and so the whole hospital smelled like food, and that wasn't helping, so we went back downstairs and sat in the waiting room again. After that, we played Go-Fish for a little while, and read a story, and played with some toys... the clock ticked by so slowly. Finally about the point where she couldn't stand it anymore, it was 2:15 and they came and got her for the MRI, She was done about 3:15,.. she woke a lot more roughly than she did yesterday & was pretty upset, but I was able to console her, and by 3:30ish we were on the road. Thankfully, traffic wasn't too bad, and we still made it home in a little over an hour,.. just before 4:45.

A long, long day, and we are so pooped, but otherwise, the scan went well. Grandma, don't feel bad,... accidents happen, and we love you!! (((hugs))) K, folks,.. that's all I can muster for an update today. I'm sheer exhausted. Ashley is doing well, and seems fairly perky now that we're home, and she can play & have some fun in her own environment... I'm going to do as a little as possible until I can snooze. I am so ready for bed and to catch some Zzzzzzzzzzzzzz!!!!! We see the oncologist again on Thursday, and should know all the results from all of the tests between yesterday & today by then.

They're adding up fast...

Ashley's MRI went well this morning. They didn't have any problems. They did the scan on her brain today, and the MRA,.. also her labwork. Her spine will be done when we go back tomorrow morning. Very tiring day, but went well, and that's what is important... ready for a good nap now though. She's a little fussy from the anesthesia, but overall, she's good. Need to rest up before we have to go back again tomorrow. We left here about 7:45 AM, and got home about 1:00 PM. They said the results should be ready in 48 hours. We see the oncologist again on Thursday, and so the results for all of everything should be ready by then. Needless to say, I'm anxious for the results. We wore our new awareness pins today,.. Ashley made sure people noticed her's. She seems pretty impressed with it, and made certain I put her's on her new ladybug hat last night before she went to bed. I added some pictures, of her showing it off, on her website... pretty cute. Well I will post more again tomorrow after she has the next one. I can't believe it will be her 5th MRI,.. 4 of them just this year alone already. January, April, and now the ones today & tomorrow. They're adding up fast...

ErRoR

I just wanted to update on Ashley's MRIs & MRA,.. There was an error in the scheduling information. She is scheduled to check in on Monday @ 9:15 for a 10:00 A.M. MRI, MRA, & labs, and then she is scheduled again to check in on Tuesday @ 10:15 for another MRI @ 11:00 A.M. I'm not sure whether the increased dosage of the anti-seizure medication is helping her some or not, or if this is another one of those periods where she has a couple of goods days, but the last couple days haven't been too bad as far as pain episodes, and they have been by far less frequent, but some days can be that way. She has been a lot more 'wired', and hyperactive though. I've been up with her the last 4 nights, and so I haven't gotten much sleep, nor slept well when I have slept. One of those nights she awoke from an episode which doesn't happen often at night. The other nights, she was just plain 'awake' when she normally shouldn't be. One night it was all I could do to keep up with her,... asking me '20 questions' a mile a minute, LOL. I am plum exhausted from stress & lack of quality rest,... I always do around these MRIs, but overall we're doing okay.

Bruised Spirit...

Sorry to take a few days before posting since Ashley's last appointment. Things have been pretty busy. So anyway, Ashley saw the oncologist again on Friday. On the way there she had a really bad epsiode. The pain was so intense she got sick to her stomach, and she started having that pain in the back of her neck along with the eye pain. This is conscerning the doctor because the neck pain seems to be building similarly to how the eye pain started, increasing in frequency & intensity. Also that the pain level nauxiated her. During the test to check her peripheral vision, she didn't seem to be able to see in the outer regions that she could 3 weeks ago so this is of conscern as well. It was on the left side where that tumor is larger than the right side. Her MRIs have currently been every 3 months, however the doctor does not feel we should wait until next month, and has scheduled her for MRIs next week. He wants an extensive MRI on her brain on Monday, and another on her full spine the following day, on Tuesday. One of the MRIs will also include an MRA which will scan her blood vessels as well. They have to inject a dye, and it will help show if there are any constrictions that the MRI alone doesn't show. These scans will be more time consuming and he does not want her under the general anesthesia for that length of time all at once so that's why he made the decision to do two separate days back to back. Monday, we have to be there by 7:15 AM, and Tuesday, we have to be there by 8:15 AM. It's an hour drive from here each way so will be early rising those days. He is consulting with the opthalmologist again, and we will likely be going back there again in th next couple of weeks. We see the oncologist again next Thursday, after the tests have all been done. He didn't go ahead and do the draw for the Liver Function Test yet. He decided that it could easily be done when they run her IV during one of her MRIs next week, either Monday or Tuesday, and that way she doesn't even have to know they did it because she'll already be under the anesthesia. He's always thinking of her comfort, and I really like that. Next week he will be in Boston at an oncology convention, and plans to consult as many of his collegues from around the country as possible, to see if anyone else comes up with any other thoughts on Ashley's particular case. He upped her dosage on the anti-seizure medication from a 1/2 tsp. 3 Xs a day to 1 tsp. 3 Xs a day, since we weren't seeing any changes. He said we'll try this dosage for at least 4-6 weeks to see if there are any changes. He says he still plans to leave chemotherapy as a last option, but that we may still end up considering her again for the treatment. He did stress that it would be a year long treatment if we come to that, but hopefully that will still be awhile yet. Rush-hour was horrible, especially being a Friday. What is normally an hour drive, took 2 1/2 hours to get home. It was 91 degrees that day,.. thank goodness for A/C! It was stop & go, bumper to bumper, barely moving a few feet at a time for the first 2 hours, just to go the distance that normally takes a half hour,.. insane. We were so glad to finally get home!

Brittney is doing well. I kept her well medicated for the first few days, and then after that she was able to stop all pain meds completely, and hasn't complained of pain much since... only minor soreness a couple times. We saw the orthopedic surgeon yesterday. He confirmed that the break is too high to cast. She has to keep using the sling for 3 more weeks, but we don't have to wrap her with the ace bandage anymore so she's happy about that. They x-rayed again, and we go back for another follow-up in 3 weeks. He said they'll x-ray again, and we should be seeing new bone growth by then. The hardest thing for Brittney is that he said she can't do anything that will endanger her to a possible fall, or injury to her arm for 3 months, and that especially includes riding her quad. Well, for any of you who know Brittney well enough, you know that she's pretty mad about that. That means no riding for her, over our next 2 main camping trips this year,.. 4th of July & Labor Day. Physically she's doing okay, but her spirit is a little bruised at times.

A Broken Arm...

Okay, so Ashley is doing well. There really aren't any changes with the new medication yet. She still needs the Tylenol for eye pain episodes. Her follow-up is this Friday at 2:00 pm. I've noticed she has started complaining about neck pain a little more often lately so something to bring up on Friday when we see the oncologist again. The eye pain is still primarily in the right eye, but she has complained about the left more frequently, too. Her next MRI is planned for mid-July, unless they decide there is need to do it sooner than the 3-month intervals we've currently been doing. Her need for the Tylenol has still averaged the 4-6 hour intervals,.. no real changes in anything as of yet.

Courtney had her appointment with the dermatologist last week, and he says it is a minor skin thing, and definitely NOT Scleroderma, or anything else serious so that is a big relief. He gave us medication for it though, and she has a follow-up appointment next week.

We hope that you all had a nice Memorial Weekend. Our's was wet & soggy, but we had a lot of fun, and it was great to breathe in all that fresh mountain air. We look so forward to those camping trips. We just took our tent this time, and when we got up there, we realized we were short a pole so we found a tree limb and broke out the duct tape and did it 'redneck style'.

Brittney rolled her quad on the hillside, and broke her arm Saturday. She's doing well though. The doctor in the ER said that the break is too high so casting it wouldn't do any good. They splint it with a sling and used a wide ace bandage to immobilize it to her body, and two types of pain meds. And, of course, it was her right arm & she is right handed... isn't that just the way? We were able to continue camping, and still ended up having a nice weekend. Brittney is getting along pretty well with one arm, but she does get frustrated easily about all the things that she can't do now. I'm waiting to hear back from our doctor on which orthopedic surgeon she wants her to see, and then we'll get an appointment set up for this week. *sigh* Does it ever end?