More surgery?

It's been a good month. Busy, but good. We did the neuro testing, iq tests, etc. We are still waiting on the results, but preliminary confirms some real strengths and some weaknesses depending on the area. The doc said his memory is very good, however, and seems unaffected.

We also went in for the plastic surgery appointment and, surprisingly, they seem very interested in facial reanimation. I suspected from my research that it would be too late and extensive to revive nerve damage. However, the military docs in Washington D.C. are interested in his case and have requested his reports and scans. It sounds as though they might fly us to D.C. soon to do some nerve testing and consultations. I'll admit, I was taken aback by their interest. It would be a very complex and involved surgery/process but if it could lead to a smile then it's worth a look. We'll know more after the holidays. I'll be sure to update the site as I hear more.

Tonight we met at the Rainforest Cafe on the Riverwalk to receive Ethan's Make A Wish trip itinerary. We take flight in less than 48 hours! Eeeek, I haven't begun to pack!! We are very excited, of course, and very thankful for the opportunity. Ethan picked a week visit to Disney World. Yay, Christmas with Mickey Mouse! Every young child's dream I'm sure. Anywho, our Make A Wish volunteers, Evette and Faye, were really kind and gracious and we are thankful they were assigned to us.

I suppose this is a short one- I could go in to Ethan's recent developments further, but honestly, I'm too tired and have too much to do. I will report that he continues to do very well. He's getting stronger, eating more, and still making progress bit by bit. Again, I'll be sure to report any news on the facial reanimation.

Happy Holidays and love to all.

<3 <3 <3

G-Tube out, lots of walking...

Ethan hadn't been tube fed in over two months so we felt it was finally time to take the mic-key button out. The docs just said to pull it out and patch it and it would heal on its own. It did, the hole had closed by the next day when I changed the patch. He was quite nervous about removing it - it kinda rubs when you pull them out and insert them, but he's very happy he doesn't have it anymore and doesn't have to endure any more replacements. Obviously, he's eating pretty well on his own now. Recently, I've seen an increase in his appetite which is probably attributed to all the walking he's been doing!

Yup, I demanded no more scooting around the house. He could only use his walker at home. He fought it at first, but then seemed to prefer it. Then, Uncle Cole was like - just take the walker with you instead of the wheel chair while you're out and about. I fought it, but then preferred it! The walker is kinda big and I find it a little difficult to watch Ethan and control Brynn while we're out, but it's worth it. Ethan loves taking it out for our nightly walks now and loves to go roam around Walmart, or similar roomy stores. He's doing very well overall.

His eye seems to have centered very well. We were suppose to have a follow up Monday but the office cancelled it weeks ago and I have not been able to get through to reschedule it since then. I'm very irritated about that! I'm resorting to having his Oncologist get his follow up with the eye doc.

We had the CureSearch Walk on Nov. 5th. There were lots of other cancer kids there along with lots and lots of supporters. Many commemorative teams, etc. We belonged to the BAMC Brave, which Nicole, Ethan's nurse, organized. Their goal was only like 2k and they managed to raise over 7k. There are some pretty amazing supporters out there. Some of the big donors were even parents of a patient! Good job Nicole!

Ethan's upcoming appointments consist of the plastic surgery appointment I discussed in my last post, the neuro psych testing, and a clinic appointment - oh and an eye follow up if that office ever gets their stuff together!

School is going well. Ethan and I spend a lot of time together working on schoolwork on the days his teacher doesn't come. I used to have him do it daily (Mon-Fri), but felt I was overworking him, so I cut it down to Tues, Thurs, Fri. It takes a long time to do the assignments online. The math is getting fairly involved now. However, he's probably ahead of the game in some areas, but a little behind in others. I feel much better about how things are going now.

I think that about covers it. Hope you all are well and keeping warm, safe, and happy for the upcoming holiday season.

Thanks to all for your support and love to all!

Neurology Appt. & MRI

Went in Monday to see a neurologist at BAMC. We discussed neuro psych testing to get an idea what his positives and weaknesses are in the educational arena. This type of testing should be a bit more thorough than what the school can provide. I also discussed his aptitude with his teacher and she believes Ethan is very smart and skilled but obviously has some physical limitations along with a delay in response. The delay in response is due to the Posterior Fossa Syndrome.

We also discussed the facial paralysis. Most likely it involves the 5th, 6th, & 7th cranial nerves with some impairment in all but no complete loss of function in any one. This doctor believes radiation was likely the primary cause. However, we've asked just about every doctor and not one can be certain and many have said it was from surgery, CSF pressure, radiation, an infection, a combination, etc. We will probably never know the true and exact cause. Based on my research and doctor input, we're not sure a whole lot can be done at this point to regain what has been lost but we're still hopeful. We continue to do facial exercises and are going to start electrical stimulation soon. Also, we have an appointment lined up with a plastic surgeon just to get an idea what options are out there, if any. To me, this is more or less so we have an understanding of what types of treatment are available now versus what will become available over the years.

On Thursday, we went in for his MRI. They scan the brain and spine just looking for ANYTHING. So far so good!!! He'll continue to get MRIs, blood tests, etc. probably for the rest of his life! Obviously, these will become less frequent as time goes on, but possible late effects will be closely monitored forever!

He is now eating on his own 100%!!! We're very excited about that. Some days he doesn't eat enough or drink enough, but typically that is just one out of five, so we believe all will be on par very soon. He drinks his nutritional shakes by mouth now, so that helps to keep the weight on till his stomach is used to taking in a regular diet. We will be removing the g-tube soon enough! Also, we have the option of removing his port in a month or so too, but we may opt to keep it in due to the fact they will still be drawing blood so often. We'll be discussing it with Ethan to decide.

So all is well.

Next Saturday, we will be doing the CureSearch walk with Ethan's nurse, Nicole Molett. Here is a link if you'd like to support a good cause: http://www.curesearchwalk.org/faf/search/searchTeamPart.asp?ievent=481284&lis=1&kntae481284=931E60D8679C4128A63A05501AA27CF9&team=4863534


Did you know "For every six research dollars per patient with AIDS and every one research dollar per patient with breast cancer, a child with cancer receives only 30 cents?"

Thanks for all your support, love, prayers, positive thinking and energy. Love to all!

Eye surgery today - hummelshiem

Went pretty well. It was delayed and then longer than we thought it was going to be but the docs said he handled it like a champ. He's a pro at this surgery thing. His doctor, Valentin, said they looked perfectly aligned and there is a 95% chance they will stay that way. We'll know for sure in about eight weeks. So all is well. We're all very exhausted and happy to be relaxing at home now. Thanks for all the prayers. You can see a post surgery pic on Facebook.

Love to all.

Ears, eyes, head -

Went in for the hearing test last week. He did lose a little more hearing in both ears, but nothing drastic. I was actually hoping for some improvement, but we'll take a small decline versus a large one. Next Friday he has his pre-op appt. for his eye surgery the following Monday. He also finally has a neurology appoint schedule for Oct., in addition to, his next MRI on Oct. 20th. It'll be a busy month.

This past Saturday Ethan's right ear started draining a great deal, so we started ear drops on Sunday and confirmed that it was the right thing to do in clinic by Monday morning. They decided not to give an oral and to see if the drops would clear it up - it worked. Stopped draining yesterday. He had no pain or fevers so we weren't too worried. He still has a tube in that ear.

We talked about his g-tube being removed when they take his port out - six months post last round of chemo. That will be really nice, but he has to be eating enough on his own first, of course. He's getting there, slowly but surely.

In all, things are progressing fairly smoothly. It is so nice NOT getting chemo!!!

Love to all.

Doing quite well.

It has been so wonderful not getting chemo and making multiple trips to the hospital! Ethan is doing great. Playing tons and catching up a great deal with his education.

He recently went in for his eye appointment and they decided to go through with the hummelshiem surgery. This will bring his right eye to the center so that he can see with both of them at the same time versus alternating them. This surgery is October 3rd. On Thursday, he has another hearing test, so we can find out what his baseline is post chemo. Maybe we'll get lucky and some of the right ear hearing loss has dissipated. Then, in October, he has an appointment with the neurologist who should be able to tell us what nerves are damaged and causing the facial paralysis. Maybe he'll even have some options for recovery there as well (cross your fingers).

Ethan still has multiple therapies a week and home school. It is all going well. Now, if it would just rain...

Back from our trip.

We had a nice visit to UT and CO. The weather in both states was phenomenal. Of course, it is outrageously hot here in San Antonio right now. We can't wait for the winter to roll around.

Ethan has been doing great. His energy is building and building and his appetite is slowly increasing. He starts home-bound school again next week. We're all looking forward to that. I've got to get on top of supplementing his learning!!

Hope you all have a great week.

-Nikki

MRI Results

Ethan has been doing very well. Since we got out, he has only needed one platelet transfusion and that was last Thursday. He also had his MRI last Thursday and the results were good of course, no changes. Everything looked clean.

We went in this Monday and counts are continuing to climb, slowly but surely. We will go in again this Thursday to be sure he is creating his own platelets before we head out to UT for a couple weeks.

We got Ethan a bigger bike last week and a new helmet. Although he needs help getting on and off, he does a great job pumping those wheels on his own. He has enough balance now to stay upright with training wheels. Biking was his favorite thing to do before surgery, so hopefully we can get him back to that. It would sure give him some needed independence!

He is continuing all his therapies and will be starting homeschool again in late August. Thus, even though there is no more chemo, he still has a very busy schedule. This vacation will be a great break!

Thanks for all the love. Hope you all are well.

Nikki

Getting Out - Finally

Ethan's ANC was 324.9 today. Typically, this would be a direct get out of jail free card, however, the attending this week is a bit more conservative than others with regard to the ANC. He really was pushing for 500, but we talked and since Ethan is clearly on a continued rise, he's going to let him out this afternoon!!! Ryan relieved me and will stay with him until the official release. He was getting another platelet transfusion when I left because those are still declining. He should start maintaining and producing his own platelets by week's end if not sooner.

This was a loooooong stay. Phew, so glad it's about over. Plus, we don't have any more chemo so we should not have to check in again.

Next up, clinic visit bright and early Monday morning. He may be due for platelets again... Then, Thursday, we have a sedated MRI scheduled. Then, August - da da na naaaaaa - vacation! Driving on up to Utah for a bit and getting out of this heat.

So, finally, things are looking good. Oh, and, before UT, Grandma Black is still coming out for a week. She had to postpone it one week, so now she's arriving next Thursday.

Thank you for all your prayers and positive comments. I know it helps.

Until later -

Getting There

All right, his ANC is still low at 174. However, it looks like the ANC is continuing to climb. He hasn't had any fevers for over 24 hours. Unfortunately, he got one yesterday afternoon. He's definitely feeling better though. No vomiting, fevers, and a lot more physical activity is transpiring. He even ate a little dinner tonight!

So tired of being here. It's even getting to Ethan! He is so ready to be in the comforts of home.

At least we're phasing out of the worry stage.

<3

WBCs Finally Climbing

WBCs are finally on their way back up! He still is having some low grade fevers, but fewer and fewer. Hopefully, this pattern holds or gets much better now. He got another platelet transfusion yesterday afternoon and he got a good boost.

Pray, pray, pray we can get out sometime tomorrow! My only concern now is if a high fever pops his ugly head up again. This has been a grueling stay. Mostly because Ethan has been feverish for so long. That's not his typical pattern. Regardless, this should be his very last admit - no more chemo to beat his little body up!

<3

Maybe a little progress...

Last night I got a break. Ryan came in and spent the night with Ethan. He continues to have high fevers and is vomiting occasionally, but the intervals between fevers continues to get longer. Also, they saw a few new, healthy WBCs on his slides. Though his counts are still really low, it could be the start of the climb back up.

When I came back in this afternoon, his eye also looked much better. Hopefully, my next post reports his WBCs are climbing for sure! The docs and nurses both suspect his fevers may actually be due to the antibiotics at this point, but obviously can't be sure.

So keep the prayers coming please.

<3

Still Fevering

Ethan continues to have fevers, so early this morning they added a stronger antibiotic, vancomycin. Hopefully, this covers whatever the problem is with Ethan. However, there is always the chance he is only fevering because his bone marrow is so beat up and his counts are low. They suspect this may be the case, since even in this poor state his body would likely produce some WBCs and he still hasn't. Really, that's a good suspicion, but they can't risk not treating him in case it is something more serious that they can't see.

Anywho, I'm guessing his fevers are going to start cutting back soon. Actually, the interval in between fevers is already getting longer. That actually began before they started the second antibiotic. I see that as progress, although the doctor didn't seem all that encouraged. Anyway, I know the little punkin is going to get better soon. Hopefully, we get out before Grandma Black arrives. She'll be here on Thursday. The kids are very excited!

<3

Rough night -

Ethan had high fevers throughout the night, but handled it fairly well. The little guy rarely complains. He would shake then sweat pretty heavily. His left eye now appears to be infected. Could be chemically or bacterial. They'll keep an eye on it. If it continues to get worse, they'll treat it specifically.

He appears to be much better this morning. Hopefully, he doesn't get any more high fevers. His counts are actually still dropping though. The blood and platelet transfusion obviously helped, but his fevers probably burned through quite a bit of the boost already. I'll bet he'll need more platelets tomorrow. Looks like we're in for the long haul - 4-5 days or so.

Just pray the little guys turns a corner today and his little body starts producing nuetrophils.

Brynn and Ethan are watching the hospital's The Fox and the Hound vhs.

Fever - back in the big house

Ethan started feeling lethargic yesterday afternoon but didn't spring a true fever till the wee hours of the morning. He did, however, start vomiting quite a bit, and wasn't able to hold any tylenol down. Thus, here we are at the hospital again. They've started fluids, antibiotics, and I'm sure platelets and blood will be next. His temp has crept up to 102.

His eyes are really blood shot, but they get like that when his platelets are low. We will be here for 48 hours at least, to make sure no cultures grow back. He'll have to be fever free for a bit and his WBC should be at 500 or climbing as well. I don't believe it has to do with the peg tube this time, as it doesn't look the least bit irritated.

Hopefully, he'll be here just long enough to get some fluids and get those WBCs on the way back up. Will check back soon.

Week one check up and LAST VINCRISTINE push!!!

The week has gone pretty well. Ethan has been tired but not too bad. He hasn't eaten much at all so he is on tube feedings. We're at the clinic and just got the very last dose of chemo. His counts are low, so we're getting platelets today. We will come back Monday for a blood transfusion and more platelets if needed.

We will have to take it easy the next week or so until he his counts come back up.

<3

And we're home...

It may be 6:30, but knowing we no longer have to be admitted for chemo makes a late start and late discharge seem trivial. (Actually, it drives me nuts being at the hospital longer than planned, but Ethan and Ryan are cool about it.)

I know I keep saying it's the last round of chemo, but the last round actually includes one more shot of vincristine next week at the clinic. It'll be official then, but seems like more of a celebration today since he no longer has to be admitted to the hospital for meds.

We are so happy we've come this far and so thankful Ethan has responded this well. We will continue to pray for Ethan, that he remains cancer free and continues to regain strength and abilities he lost post surgery.

Thank you to all of you who have supported us along the way, in any way shape or form. You all are awesome!

I'll continue to make progress updates. We still have a bit of a road to travel, but we're almost there!

Have a happy fourth of July!!!!!!!!!!!!!!!!!!!!!!!

Last dose is up...

Yesterday went well. Last night wasn't bad either, Ethan only went pee a hundred times or so. The hydration is a good thing though, gotta cleanse out all those harsh chemicals.

They're hanging the last dose now and then he'll have additional post hydration. We should be outta here by threeish. Cross your fingers!

<3

Slow start on the final round -

I don't really want to start off the final chemo post by complaining, but that's what I'm going to do! Got here at eight and chemo is finally going to go up at 12:30. New sloooow record. Ah well, can't all be a breeze when curing cancer.

Anywho, Ethan's been doing pretty good. ANC today is 1300 which seems kinda low at this point, but he has had eight rounds already. He's been a little shaky, eyes are red, and bruising a little. But, he's been scooting around the house and playing quite a bit with Brynn.

We're hoping this admit goes smoothly and he starts feeling really good in just a few weeks.

It's been really hot and it never rains... I thought I left AZ. Looks like we're moving to WA next March. Ryan will complete his internship at Fort Lewis. I'm excited - mountains, trees, rivers, ocean, it has got it all! I keep telling Ryan I'm taking the kids camping with or without him.

I'll update with any changes, but as it stands we should be out of this joint by tomorrow night. Then, it is time to gorge ourselves on cake and ice cream. I'm sure Ethan will be up for it - NOT!

- Love to all

Doing great...

Knock on wood. It's hard for me to say things like this, because then it seems like something happens... However, we went in Monday and counts were holding so we went in again on Thursday. Although his ANC was still low around 300, he seemed to be on the climb back up. Cutting his cisplatin in half sure has helped this round. I can't remember a treatment wherein he only needed one blood and platelet transfusion and didn't have an unplanned stay in the hospital. PRAY it stays that way. If so, we have till June 30th before he goes in for his last round of cyclophosphamide.

He's definitely still weak but not very nauseous and in good spirits. Like I mentioned before, he dropped weight, but I was relying on him too much and doing less feeds than I should have been. When he's not fresh off the chemo he does a great job eating on his own. He'll probably put the weight back on in the next couple weeks.

So there you have it. Almost through it!!!

Love to all.

Ear infection

We came in last Tuesday and his ear was infected, but the meds for it have worked great. He was also bordering low counts so we returned last Thursday and got blood and platelets. Plus, he got his vincristine again last week.

Over the weekend he did fairly well. Seems a little weak and tired, but not terribly. He has vomited a little. He's also cut weight. We're in the clinic right now and I was surprised to hear he is only 43 lbs today. Back to three cans instead of two in addition to what he eats on his own.

All else is well. It's very hot around here these days. It's a lot like AZ. It's frustrating because you have to wait till evening before you can get the kids outdoors. However, there is always a nice breeze that helps relieve some of the heat.

If counts are good today, we won't have to come back for three weeks. We are just waiting to hear.

Hope you all had a great weekend and have a wonderful week. <3

Update

It's Sunday afternoon. We're just hanging out at the house. It's very hot here in San Antonio.

Ethan has done well so far, although his ear has been draining a bit. A bit of blood here and there, so we will go in first thing tomorrow to be sure his platelets are not too low. He seems to have a bit more energy this time since his dose of cisplatin was cut in half.

I'm really excited that we are nearing the end of his chemotherapy. This has been an intense year. Like many before us and after us, we value the simple things in life much more now. Money, jobs, foreclosures- they can't shake you like this!

After his last treatment, we will continue to see the doctor frequently to make sure all continues to be well. Then, hopefully, slowly, we will resume some "normalcy." I can't wait for Ethan to feel good again.

As always, thank you to everyone who reads these posts and prays for Ethan. Seems to me that is the most important and most powerful thing you can do for someone you love.

Alright, enough, enough. Hope you all are well. Love to all!

Eight down, one more to go...

We checked out at 10:30 am! Everything went smoothly. He didn't vomit once while in hospital, but made sure to as soon as we got home! Then, he spiked a low grade fever two hours after getting home. Nothing since though, so hopefully he maintains and we don't have to head back. If you're the praying type, please say a prayer that he starts feeling very good, doesn't get an infection, and gets to stay home all the way to the next round - six weeks or more from now. Please and thank you :)

We love you all. Thank you for all your support; prayers, energy, and positivity.

Almost to the end and we can't wait.

Love,

Nikki

Chemo is going...

I thought we might have to wait another week, but, no, his counts were good. He's been doing pretty good but not as steady on his feet. He continues to improve in all areas though. His most recent hearing test continued to show a decline, so they cut his Cisplatin in half this round. Maybe he won't be as pukey! He also had an eye exam yesterday. For those of you who don't know, since surgery, his eyes cross at times and don't track out (to the sides). The doctor discussed surgery, post chemo, to correct the crossing but probably won't fix the lateral outward tracking. Erg, another surgery... But if it will help his eyes, it's worth it. Vision in both seemed to be 20\40 but they'll test that again to be sure.

I think that sums it up...

Will check in again soon.

Love to all.

Delayed!

Ethan's counts are too low to get chemo. He's actually borderline, so we're going to delay it one week. I did think he was a little more tired than usual, but I was still surprised when they told us his counts.

Things this morning were moving along fast, they had prehydration going within the half hour we got here. Hope it goes that smoothly next week!

P.S. Looks like a tornado is about to touch down out here!

Almost there...

Second to last treatment underway. We just got to the hospital, hope everything goes smoothly. Praying for no unplanned, extra stays this round.

All has been going well the last few weeks. Ethan eats most of his food by mouth now. He'll prob go back to formula after the chemo is administered, but only for a few weeks I'm sure.

I'll update with any changes.

Nikki

Getting Out!

We get to goooooo. Just waiting for our discharge meds and for Ethan to be deaccessed. So happy we didn't have to stay 3-5 nights. Ethan has been very playful this afternoon and should be able to resume all his normal activities.

Thanks for the love.

-Nikki

Cross your fingers, hold your breath...

Just spoke with Dr. Howell, his WBC is 500, ANC 125, but platelets were low again. They just gave another transfusion, however, she'll let us go home tonight as long as the cultures continue to be negative at 5:30pm. Yay!!! Praying we go home. This will be the shortest infection stay if so.

He has not had a fever since the first night and has been perking up. He is still a little shakey but he has the tendency to sit still when he's hooked up, so I'm trying to move him around and loosen his joints. He ate a decent lunch by mouth too!

They gave us a new ointment for his peg tube site too. Hopefully, it helps more the next time his counts are low.

TTYL

Things can change quickly...

We're back in the hospital. He started having low grade fevers yesterday and this afternoon it was high enough to head to the ER. Turns out his counts are all really low again and there is redness at his peg tube site - again.

He'll get platelets, fluids, Cephapine, and Vanco. We'll be here for a few days at least. As usual, Ethan's handling it well. The usual anxiety, but being a trooper. He's got the occasional fever shakes.

There are some new faces here on the floor, but they seem to be attentive and pleasant. Let's hope everything runs smoothly.

Ethan's not the only one in the hospital bed right now. His Grandpa Black is also TRAPPED! We hear he is doing well but won't be able to come out for the visit that was planned at the end of this month. Maybe if we can get Ethan well enough we can visit him before Ethan's next round. Regardless, we are thinking of Grandpa Black and hoping he gets better soon too.

We will update soon with any changes.

-Love to all

Still doing well...

We went in Thursday and his counts were holding so he got his Vincristine and we left! He is not due to go back in till next Thursday and, hopefully, will not need anything.

This week is Fiesta in San Antonio and since we are very close to downtown, there has been a lot of activity near our house. We decided to keep the kids out of the crowds so we are just laying low. Actually, the streets are blocked off anyway...

Grandma & Grandpa Black will be visiting soon and the kids are super excited.

Other than that, we have not been up to much. Just enjoying the uneventful right now.

<3

More platelets and blood

We went in yesterday for counts, but the clinic was so busy we had to come back in this morning for Ethan to get his platelets and blood. Everything went smoothly and, although Ethan's counts are low, he is doing superbly! He definitely seems a little weak but his spirits are high and his peg tube site looks great. We're hoping his body starts to come around on its own later this week. After his Thursday check up and Vincristine, he should have a three week break before the next round.

Sigh.

It's been a good week.

-Love to all

Update on Ethan's every day life

I thought I'd give an update on Ethan's progress and what his daily life is like.

He still primarily feeds through a tube (a hole in his stomach). He gets two cans throughout the day (four separate feeds) and then two cans on a slow drip (with machine) overnight. He can eat and drink by mouth but there is really only 2 weeks out of a cycle when he feels well enough to do so and it's still not enough. We suspect he'll do fine on his own once he is done with chemo. I believe they told us they will wait several months before they remove the tube post treatment.

He doesn't quite walk on his own yet. He can hold himself up just fine but he's wobbly. Some days are better than others, and, as mentioned above, there really are only 2 good weeks (of a chemo cycle) of physical activity. In those time periods, it almost seems like if he just had a little more time he could walk on his own. We hope to see him walking on his own soon after the chemo is over or even before. He does pretty well with either of his walkers and scoots around the house all the time. He needs assistance going to the bathroom. He can't sit down on the toilet on his own or stand up, but he is making progress with his clothing. He is relearning to dress himself. However, this tires him easily. His dexterity is not the best yet either. Buttons are a pain but he does okay with zippers. His writing is getting much better, but he's switched to being left dominant from right. He does really well in home school and he still has a an awesome memory!

When he gets in his Powerwheel Caddi, he has a great time. No problem steering, pushing the pedal, turning, etc. Great combination of hand, eye coordination activity.

He usually takes an afternoon nap but not always. He sleeps fairly sound, thankfully. He has a tendency to talk in his sleep, but he did that prior to all this.

He doesn't have a lot of home meds. Just the zofran which helps with his nausea. He takes a dissolvable pill under his tounge every six hours. He only uses this for 2-2 1/2 weeks at a time, as the nausea eventually subsides and he stops vomiting.

On an A cycle (six week), he checks into the hospital and gets Cisplatin, Lomustine, and Vincristine overnight at the hospital. If all goes well, it's a 26 hour stay. When we get home, he isn't doing the hottest but really starts sinking after five days. He starts puking right away, due to the Cisplatin, and he vomits continuously for two weeks. That part sucks. I'm better at his feeds and avoiding extra vomits, but you can only avoid so much. One week after his admit, on Thursdays, he goes in for Vincristine which he gets at the clinic and doesn't have to stay overnight. This stuff makes him extra pukey, so Sat and Sun we are guaranteed a little extra! His counts are always low at this point and he usually will need a platelet transfusion. Then, we typically go back in the following Monday for a blood transfusion and another platelet if needed. Then, again, two weeks post admit, he will get another shot of Vincristine and more blood and platelets depending on counts. After that, he typically starts the climb back up. Of course, there are unplanned visits in there some times. Infections, fevers, flu, etc.

On a B cylce (four week), he goes in for one night as well and gets Cyclophasphomide with Mesna and Vincristine. It seems like it hits him harder faster, but does not last as long. He does not vomit near as much but his counts still sink and he needs transfusions. He also gets another Vincristine one week post admit.

Every time he gets meds or needs his counts checked he has to get his port accessed. This is a needle going into a port placed in his chest. HE HATES THIS! He has a lot of anxiety because of this. His is not always reliable either, sometimes they have to poke him 2-3 times. Sucks that these little kids have to go through all this, but it is all part of the life saving process.

Here is his treatment plan:

Surgery 5/4/10

June 2010: 6 weeks of radiation with Vincristine

4 weeks off

Chemo Cycles begin: AABAABAAB

He only has two cycles left!!!!!!!!!!!!!!!!!

Obviously, we have seen a lot of improvement. The wearing off of the effects of the radiation has helped tremendously. PFS is much better too - from practically being paralyzed and speechless to today it is unbelievable! However, the accumulating effects of the chemo are taking their toll. He gets neutropenic quickly now. Thankfully, we are near the end!

He gets Speech therapy 2-3 times a week for 30 minutes. He has PT & OT two times a week for 45 minutes a pop. He enjoys his therapies... LOVES MS. AMANDA, his physical therapist.

He also does homeschool twice a week for two hours a pop. I thought he'd be behind since he started recently, but he does great. He really likes his teacher too.

We still go to the zoo and museum often. He goes for a ride in a double stroller with his sister daily. I think we all still have had a great year together, despite it all. We are really looking forward to the years to come and Ethan feeling strong and healthy.

EVERYONE we know has helped us tremendously and we are very thankful. BAMC has been a great hospital and I love Ethan's doctors and nurses. I feel like they are all my friends, not just Ethan's medical staff.

My brother, Cole, jokes that he doesn't help much but he really does. He is always there if I call. He's a great Uncle and entertainer to the kids. He keeps me fairly sane too. I think the last six months would have been a lot lonlier and harder without him here - THANKS COLE! <3

Okay, I'll close here. That is sort of daily life... and yearly...

Thanks again to all of you.

Thursday Chemo and Counts

Counts are decent but he needed platelets so we're hanging out till the transfusion is over. Other than that, things have been going smoothly. Surprisingly, not a whole lot of vomiting this round - so far!

We will probably have to come back soon to get a blood transfusion. Until then, we will just hang out and pray he doesn't get sick. :)

He has an eye test on April 25th to check his vision and discuss options to correct his crossed eyes post cancer treatment. Then, another hearing test will be scheduled.

Until later...

-Hanging in there

Ethan's been doing pretty well. Not too much vomiting but quite a bit of weakness. We're just praying for an easy cycle this time with no unplanned admits!!! Thursday we go in for vincristine and to check counts. I don't think he'll need any products but maybe. For some reason I can't remember the trend - if he needs them the second week out or right away? The recent B cycle threw me off.

I don't remember if I mentioned, but the last hearing test had a little more hearing loss in the upper octaves in the right ear. Nothing in the voice range and no major drop so they did not alter dosages.

I still haven't heard the final results on the MRI but the preliminary pretty much covered it. Everything looks really good, no cancer cells spotted! YAY!!!

It's hard to believe we have been doing this for almost a year. It really seems like just last week we found out. We've had so many changes this year. From moving, Ryan joining the Army, Ryan trying to swing a year-long master's program amidst all Ethan's treatments, and me becoming a housewife! I can't complain too much, as staying home with the kids is a gift, but I really appreciate Ryan for managing all these changes and doing it so successfully.

Barring no setbacks, Ethan's last round should be in June. We are so excited and so thankful he has come this far. Ethan is such a trooper. Today, even as weak as he is, we practiced walking with him just holding one of my hands and walking next to me versus in front. Every day is a challenge for him but he just keeps pushing through it. We love him soooo much - he has such a sweet heart.

And Brynn, who is absolutely 100% just as amazing. For a little 2-3 year old girl to have to endure all of this too, all the pain and changes she has witnessed Ethan go through, her outlook must be so enlightened for her age. We always think of how Ethan's perspective must be about life, but his little sister has had no veil either. Thankfully, they play together all the time now and it is a joy to see again. There were months on end where they just weren't on the same page, not to mention all of Ethan's physical limitations he was dealing with.

Well, I'm rambling a bit...

I'll update again soon.

Love to all,

Nikki

We're home!

Everything went very smoothly - only one vomit and, other than the slow start, the night went off without a hitch. We had a big, quiet room so the only thing keeping us up was the usual hydration (makes Ethan pee hourly).

They let us out early at 11 am. Which is funny because I was so upset about them not getting things going till three hours after I got there potentially causing us to be there three hours longer. In the end, however, we got out three hours early. Just goes to show me that I should not fret so much about the small stuff and be so much more patient. Man... it's hard.

Once again, thank you to every one who reads, thinks, prays, and more about Ethan. I know all the positive energy out there helps him and our family exponentially.

Now, only two more rounds and, hopefully, no extra admits in between.

I'll update next week or sooner if any changes.

Love to all,

Nikki

7th Round of chemo - busier than ever!

Sometimes it does not pay to prepare. Got up earlier than usual and got to the clinic early and had to wait longer than usual to get the seventh round started (no designated appt time). Nevertheless, it's finally going and we are hoping to only be here through tomorrow afternoon. We've been busier than ever, with extra admits, MRIs, hearing tests, PT and OT twice a week, ST three times a week, and now, finally, home school twice a week! It's non-stop lately and I'm feeling the effects - Ethan is still handling it all pretty well. Although, he did not want to come in this round and was the most unhappy about it he has ever been. It seems since it was only a four-week cycle and since he spent an extra week of it in the hospital, it had an effect on him. Thankfully, we have only two more rounds to go after this admit!!!

The preliminary MRI results all look good. <3 <3

Will update you on our departure but a okay so far.

-Nikki

Finally home!

He made his counts this morning and they let him go at 8am!!! Boy, that was a long one. He is still pretty weak but wants to go out and ride his Cadillac right now! Ryan is sleeping, Brynn is picking on Ethan, and I just wrapped up my bills. Now, maybe some normalcy around here.

He is such a tough little guy. He never complains about pain or discomfort. He is NEVER whiney. He handles everything amazingly. He does have some major anxiety but he is allowed to express some form of anguish, right?

Anyway, we are really happy to be home. Thank you to everyone for your encouraging words, thoughts, prayers and energy. It perks us up and keeps us all going.

<3 Nikki

Okay - almost there...

I think we need to be more specific. WBC went up, but not quite enough and not with the type of WBCs we need - neutrophils. Soooooo, Think Neutrophils! Think Neutrophils! Think Neutrophils! His ANC (absolute neutrophil count) is still not there.

He is feeling much better and playing more. The doctor recommended a GSF shot to pump up those counts, but Ethan was not for it. I had Ethan talked into it when Ryan shot it down, but then Ryan realized it was just a quick shot in the arm. (He thought it was a new IV in the arm.) Yet, it was too late by the time we figured out the miscommunication and I already gave in, cancelled the order, and let Ethan know... so we'll hang in there one more day and if counts are still too low tomorrow Ethan said he'd reconsider the shot. The doctor was pretty convinced he would have been released tonight with the GSF boost.

Nevertheless, he started the climb up so maybe by tomorrow his neutrophils, specifically, will be high enough to let him come home safely. THINK MORE NEUTROPHILS FOR ETHAN. :)

At least we know the end of this stay is near. I'm getting too grouchy and I'm ready for some much needed sleep!

<3

Think WBCs!!!

Fevers - in check.
Infection - in check.
Red blood cells - in check.
Please pray, project, and send for more white blood cells and we will be home free!!!

Still here

Fevers keep coming but the site of his infection is looking better. Hoping by tomorrow he is feeling better. His wbc is still really low though, so regardless how well he starts feeling he won't be released till wbc climbs back up. We're watching a lot of movies, reading, and playing a few card games.

Will post if anything changes.

<3

Check-in

We ended up admitting Ethan after all. The fever crept up and he's on antibiotics and tylenol. I think it's another peg tube infection but the docs are not convinced yet. He seems to be handling the stay okay but he was very upset he had to come. He'll probably be here for a few nites. His white blood cells counts were only .2 last nite, so he'll have to recover some and continue on the climb before a release. Fever spiked to 102 last nite before the second dose of tylenol hit.

So, once again, send good vibes his way please.

Nikki

Hanging in there -

Doing okay. Got platelets on Thursday and may get more Monday. Will definitely get blood Monday. He doesn't feel like doing much at all. His temp is only a notch above usual and hopefully doesn't creep up any higher. He'll have a mandatory hospital stay if so as his WBCs are barely there. So send positive vibes his way please.

Love you all and will update with any changes.

6th Round of Chemo

Another check on the calendar. We're all done with the sixth round and it went very smoothly. No fevers and only one vomit episode so far! The six month count down has begun...

He's doing really well today, but we expect he might start feeling weaker within the next couple of days. Cyclophosphamide tends to hit him faster, but maybe we'll get very lucky. I got to say, I was surprised by how well he did while we were in the hospital and they were administering it.

We go back in either Wednesday or Thursday for his check up so I'll update again then.

TTYL <3

Getting better...

Went in today for his check up. His peg tube infection is much better. He is also a bit more energetic. His counts are finally on the upward climb, so we don't have to go in for another two weeks unless there is a problem. The only negative is his right eye is really red today. This is a fairly common occurrence for him, but it's a bit more irritated looking than usual. Hopefully, it resolves on its own.

I'll review his overall progress:

-He's still not walking on his own, but is getting better with his walker. I still support him a little when he uses the walker.
-His right eye tracks better than ever, but still doesn't track past mid line to the right. His eyelids still don't fully close at night.
-His right-sided weakness has improved immensely, but the left has taken over as the dominant side.
-Speaks really clearly now, but still can't close his lips all the way. Not much of a delay from thoughts to speech.
-Left side of jaw is clearly stronger than right but seeing improvement on the right.
-No smile yet, but still seeing a little more muscle movement on the left. Plus, he's learned to express a lot with his eyes.
-Coordination overall has much improved.

He is doing really awesome when he feels well. Much has improved, it's really uplifting. Even though the chemo can be tough on him, he always comes through and starts surprising us towards the end of the cycle.

Next chemo cycle starts on March 3rd. It is only a four week cycle. Then, his next MRI is scheduled for March 29th. Somewhere in between those he'll have another hearing test. The last one went well with only a little loss in the right ear.

Today was Brynn's birthday. We've already had cake, ice cream, and presents. We had a lot of fun!

Love to all!!

Yup, it's an infection and his...

Platelets were extremely low this morning (12,000). He got another transfusion today. He also got antibiotics prescribed for his g-tube infection. The gastro doc thought it probably developed from friction (creating a sore-like ulcer), then low white blood cell counts not being able to help it heal, etc. Regardless, Ethan seemed a little perkier this morning, even before the transfusion. He is much more sensitive at the site of the g-tube though. I'll have to clean it excessively and such but we're used to that around here. Hopefully, by his next check up on Thursday the little guy will be in much better shape.

Ah, we made it through the weekend. It was a sleepless one for me, but I feel much better now knowing he's getting the attention he needs. Turns out that even if I had wanted him to be transfused on Friday, he wouldn't have been in the clinic. They were closed due to the snow.

Now, time to relax a bit... Dino Dan is on the tube and I'm going to bury my nose in a book for a few.

Have a good week!

Knock on wood:

The next time I try to post about how normal things are - stop me, or at least knock on some wood. He has been crazy weak, has had a low grade fever, and bruising everywhere. I really should have taken him in Friday. I think another transfusion of platelets would have got him through the weekend successfully. He started puking and got a low-grade fever last night. He was also being really sensitive about his g-tube but said there was no pain. I called the doctor last night to report the fever and such, but he did not want me to admit him to the hospital unless his fever became problematic. Also, Ethan kept saying he was fine, although he clearly didn't want to go the hospital. The doctor thought it was best to wait till his Monday appointment. I'm sure keeping him out of the hospital is always the best option unless he is fairly acute. However, tonight I can see his g-tube is probably infected. It has suddenly become much more red and even a little swollen. No oozing yet, but I'm sure that's next... Anyway, we'll go in tomorrow morning and hopefully more platelets and some antibiotics will do the trick. I really hope he doesn't have to be admitted.

Totally stressful weekend, but it could always be worse. I'm thankful this is all I'm worrying about now. :) I'll post again tomorrow.

-Love to all

Feeling tired...

Ethan had to go in Wednesday for blood. That went smoothly, but it didn't perk him as much as usual. By Thursday night, I was contemplating taking him back into the clinic Friday morning. I know his platelets are low. His eyes were really blood shot and he had a few more bruises than usual but nothing significantly alarming, other than how utterly weak and tired he is. It is so hard to see him like this with all the progress he's made and with how much energy he had within his recovery period last round. Well, I decided not to take him in this morning since most of the roads were closed due to snow, I didn't want to put him through being poked three times in one week, his eyes looked a little better this am, and I was really hoping his body was taking a turn for the better on its own. We'll know by Monday when we go back in for his planned check up. I pray his platelets are on the climb.

It's been super cold in our house but the heater finally started working for us today. Anything below 40 outside and apparently the house can't get any warmer than 58! It's a lovely little, old home, but definitely not insulated well enough for the weather we've been having. There was an inch or two of snow on the ground at 4:30 am when I woke up to switch Ethan's fluids.

Ethan and Brynn have resumed their prior surgery playing... there was quite a stretch where they didn't. That gives me a little more time around the house. I was going on and on to my brother about cutting my hair, going back to school possibly at some point, and some other nonsense when he commented that it's really great that I can spend my time thinking about regular stuff now versus fretting about Ethan constantly. This is so true! It's great that, even though the cumulative effect of chemo sucks, he really has been doing well. He only has four more cycles and an end in sight is really helping. Things could possibly feel normal again - and we will be so grateful.

I'm not cutting my hair (Laura snapped me out of it) and Cole is probably wishing I would have acquired more girlfriends by now to ramble on to! However, "home" is feeling a little more normal and relaxed. Ryan, on the other hand, is still really absolved in his school. It requires ALL of his time. I feel really bad for him, but he is doing really well and he'll be starting a rotation (short internship) soon which will hopefully give him a short break from schoolwork.

That about sums up the current status. Looking forward to more visits from family and friends. Hope you all are warm and well.

Love, Nic

Platelet Transfusion Today:

We got to the clinic early this morning because we figured he'd need a transfusion. Last Thursday when he got his outpatient chemo his counts were dropping fast. Today his platelets were as low as 15,000 - really low. We will be back on Wednesday too for blood which should perk him up. He has been really tired an inactive but doing well otherwise. Thankfully, no bugs. Looking forward to his counts coming back in a week or two.

This weekend we took Ethan and Brynn down to the cattle drive/parade they had downtown. The kids loved it. Uncle Cole then decided to take Mama to get a new pair of boots. While I haven't found a pair yet, Ethan picked out a very cute pair of brown and red ones. He is loving them!

There's your update... We will post again soon. Love ya!

Fifth Round of Chemo:

We went in Thursday, got his chemo, stayed the night, and got a whole lot of hydration. He did great and it all went smoothly. We're home now and happy things went so well. The only downer is that he was doing soooo well before he went in that it's much harder to see him struggling when he comes home from a new dose of chemo. He is so tired and is so nauseous, it's hard to see him like this every 4-6 weeks.

BUT, we are very thankful he has made so much progress. I can't wait till we are done with chemo!!! Only four more cycles to go.

We love you all and thank you for all your support. We will check in again next week.

Another check up:

We had a very quick check up yesterday. New nurse also, and, thank goodness, no problems accessing his port. Phew! Counts were decent so we don't even need to go back in next Thursday. In two weeks, we'll just check in to the hospital for the next round of chemo. Some time next week, he'll have another hearing test to see where he is at with that. They have to make sure he is not losing it due to the Cisplatin.

He is still drinking and is walking pretty darn good with his walker. His eye continues to be a little gooey, but we're chalking it up to allergies. Thus, we're all happy campers at the homestead for now!

We'll update you if anything comes up...

Have a good one!

Check up - no chemo.

Hi,

We went in Thursday for counts and, although Ethan was low, he did not need any platelets or blood. His white blood cell count was lower than usual and you can tell he is a little weak, as he is not walking as much (assisted), and seems a bit shakier overall. Usually, by this time he's doing much better, but it could change any day now. We're guessing the cumulative effects of chemo are taking hold.

On the upside of things, he drank milk from a straw today!!! This was an amazing feat for him since he has refused liquids all this time. He just hasn't had the muscle strength in his cheeks to do it but things are obviously getting better. He is eating a lot more variety now too. Cereal, ice cream, etc. These were all things he had too much trouble with before and wouldn't even attempt them. So yay, he's doing better and better!!! The right side of his face definitely has more and more expression too. The left probably does as well, but we don't notice anything obvious. We are with him everyday though, so it would be harder for us to notice subtle changes.

I'm still trying to push him really hard to get up and around with his walker. I have also started making him dress himself again. It takes him a really long time and it's in a seated position but at least he can do it most of the time.

He still has a couple more weeks before he has to check back in to the hospital for the next chemo cycle, but we'll continue to go in to check counts on Thursdays.

Thank you all for your encouraging words and support! We love and miss you all. Have a great week!

Nic & Fam