School fears

Another day has passed. I looked at the calendar today and was truly shocked to see that it is July 27. I seem to lose track of all time. It feels like my time is standing still, but yet the world continues to move on all around me. So once I saw the date, I counted forward to the start of school. 4 weeks. I had to stop and catch my breath. Normally, I look forward to school starting. I love a clean slate and new schedules, etc. But not this year. I am scared to death. I WANT Ally to go to school, of course. I just don't know if she has the stamina. I don't know if I have the stamina to get her there. It is not going to be easy. I told Jerad he better start blocking out some time in September. It is going to take one or both of us to get her there...and I mean possibly sitting with her through school. (get ready, Mrs Hamilton) We actually have a few friends who mentioned going to school with her too. Because, to be quite honest, I think she would do better for someone else. Less whiny and needy. There is also the germ factor. When her ANC is low, she is at high risk for picking up any germ/virus that flies by. But the doctors still feel that school is more important and that she should go. (I need to clarify this with them, exactly) I guess they think the experience of school and friends and learning far outweighs the risks of catching something. It is so important for these kids to still feel like kids and not like they are banished from society.

This week was Ally's favorite vacation bible school at Peace Lutheran (Mrs Booher's church). She has gone for the last five years! I am really sad that she is missing her sixth year. We used to wait all year for this week to come. She was actually signed up, and the volunteers said they would be very accomodating to her, but her ANC was only 300 on Friday. I thought it would be better to keep her home rather than risk another in-patient stay. But it is with a heavy heart that I let her brother go, and she stays home, yet again.

Speaking of her brother, he is starting Kindergarten! Normally, that would be a huge deal in our house and we would talk about it everyday etc. Oh, I have barely addressed it. I feel bad. I had a talk with him at bedtime tonight about getting on the school bus. He is not a shy one, not a scared one, so that is good. He'll be fine. But he could probably use a little more coaching from his Mommy. Today I worked with him for about an hour on his reading. He seems to be getting it, just the very beginning. If only I had more time.......I feel bad for the poor middle child, and especially now!

Ally was down a little more today. It seems the weekends are good and then she gets progressively worse. She wanted to go to the pool, but then she never got in. She did sit there for over two hours though, and that got us out. More nail painting. You can tell from this picture that Ally has been here. Lots of Ally's Army bracelets and even more nail polish:
Her belly is hurting. I think she maybe took in 200-300 calories today. She had lost another three pounds on Friday. Her weight is down a lot. I am scared if she doesn't start eating that we will be looking at IV nutrition. I do tell her this, but it makes no difference to her. She just doesn't want to eat. Period. I almost give up on her, but I know I shoudn't.

Thanks to all of you who still check the blog even though we are not in the midst of a medical crisis. I have many LOYAL followers and it is not necessarily the people that I would expect them to be. Some of them are people I have never met, but feel like they are truly my friend (Queen Bee). I tried to teach Carly about blogging tonight. I was showing her the pictures. So here she is... future blogger...Carly Barnett. (okay, she is actually looking at Sesame Street here, but we were reviewing the blog just prior to this)

Fighting a cold

Ally is sick with a cold and a cough. She has actually been sick with this for two or three weeks now. She is a pretty stubborn girl and absolutely refuses to blow her nose. She had several ear surgeries when she was younger and is always afraid the nose-blowing will pop her ears. So now we are dealing with phlegm that has drained into her stomach and is causing her to vomit several times a day (and night). I don't think the chemo makes it any easier either. She was up several times last night with this, and she has even done it tonight already. It is no fun, and I feel sorry for her having to deal with this on top of everything else. I don't know how she is supposed to battle a cold when she has almost zero white blood cells in her body. Their job is to fight off illness. I had everyone listen to her chest at the hospital on Friday, because I am fearful this could settle in her lungs.

Other than this and some general fatigue, Ally is doing pretty good. She wants to do more things, and that makes us very happy, but then she definitely hits a wall whether we are ready to be done with something or not. She gets a really crabby look on her face and then, well, we just know we have to stop. Today she went out to Young's Dairy and played about half a round of putt-putt and had ice cream. Her sweet grandparents (Jerad's parents) drive two hours pretty much every week just to spend a little time with her. They are devoted. So they went with the kids and Jerad while I was with my family at church. I am not sure that I have mentioned this but Jerad's parents and his sisters Tara/Bunk and Jessica/Shaun are helping me out EVERY Friday. And all of them work too. So they have to take a vacation day every Friday just to help us out so that we can go to the hospital. And they all live between one and two hours away too, so there is a drive involved. Now that is what I call devotion to our little girl. Here they are at the dairy:

Grandpa Barnett also showed his solidarity and support of Ally by shaving his head this past weekend. Too bad he is wearing a hat there and you can't tell. I guess his brother Bill just talked him right into it and then Joyce got the clippers out and he was bald. Evan and Jerad decided that they needed to stay bald for our girl so they also went bald again today. This time Ally actually felt well enough to operate the clippers. (last time she felt horrible and couldn't really participate)

Thanks to everyone for all of the hats too. We have received so many! I can't remember them all but we got some from Marco Island FL, Isle of Palms, NC, Tennessee, Wisconsin, Boston, New York City, Maine (thanks Aunt Jess), even Paris, France! (thanks to our exchange student friend Megan Neizgodski who just got back)

One thing that keeps happening to me: when Ally is a little bit better, then I get a little more sad about losing my Mom. I guess I have more time to think about that. I am still very much in grief over losing her and today was a really sad day for me. I have no idea why, it just hits me sometimes and I miss her so much it hurts. If I had my Mom here with me today my life would be incredibly different. So I still have to try to deal with that, because if I don't I am afraid I may end up in the insane asylum someday. I keep wondering why I am being hit with so many things at once. Why? WHY! Right now I keep thinking about going back to our original hometown of Erie PA. My grandparents (mom's parents) are still alive and I want to see them so much. So I am thinking of putting my Evan and Carly in the car with me and taking a trip up there before school starts. Ally just can't go that far away. I hate to leave Ally, but I don't have too many chances to see my sweet grandparents either.

As I was getting the putt-putt pictures off of Jerad's work camera, which we hardly ever use, I noticed this picture taken last fall. Mom and I were driving thru her woods on her golf cart with the kids. They hopped out and posed for this picture with the pretty yellow leaves. Look at my beautiful girl. So full of life and so full of hair. Some of you followers may have never seen her like this. Where or where has my former life gone? And when is it coming back?

Lazy Saturday

A quick post about our lazy Saturday. I don't think too many people are checking the blog over the weekend. I don't blame you...get away from the computer.

We all woke up at 9am. Even Mommy and Daddy. We are so so grateful to be getting a full night of sleep and sleeping in is even better. We did some morning projects: Ally seemed to be raring to go. We went downtown to our market. It is an open air market with fresh veggies and breads, organic stuff, good thai food, homemade dog treats, good coffee, and fresh flowers. It is one of my favorite places, it always has been. We had read that today was kids day. They had vendor's kids and grandkids selling cute little breads, fruit and veggies for a quarter, homemade knitted finger puppets, and several little chefs doing cooking displays etc. It was very cool for our kids to buy stuff from other kids. They also LOVE the market. I especially liked the kid sized cranberry scones. For us, this is the only kind of shopping we can do together. I can't take Ally in Wal Mart or Kroger or the mall. Oh how I wish I could. So I can just stick to the farmers market.

All three of our kids took a nap at the same time this afternoon. This even after waking at 9 am! The stars must have been perfectly aligned. We were making up for a week of late nights. This allowed Jerad and I to exercise together...always good.

We made dinner with the eggplant and bread we bought at the market and ate in the basement for some reason (Jerad's idea). It was fun. Again, we don't eat together all that much because Ally is usually sleeping at that time. So we really appreciate just a simple meal together. The little things are so much more important now. We had family game night in the basement and Ally beat me at Cadoo. She really had a normal day again. Her ANC is low right now (300) so we are pretty secluded, at least from indoor events. But she feels quite well. We are happy.

Looking forward to going to church and breakfast with my Dad and Nicki in the morning. I missed it last week because of Carly's party.

It turns on a dime

It turns on a dime, our life that is. Friday was the perfect example of that. We got to the hospital at 8. Ally's port was already accessed, so no poke! Several things were going our way.

1. Ally was in a great mood! Laughing, joking. Said she wanted to go swimming. Today!
2. Several friends stopped by..Miss Vicki and Miss Betsy who are friends that work at Children's. Both brought gifts and Vicki even told Ally that the nice man who owns the local McDonald's (down by Lowe's) wanted to give her a lifetime supply of milkshakes. woo hoo
3. Her hemoglobin was good (10.5) No blood today!
4. Her platelets were good (57). No platelets today!
5. Dr Broxson had a ton of patients to see in the clinic, he wanted to do her spinal early.

Could it get any better? We were going to be out of there by noon.

And then, the spinal started. She cried and flinched when she got stuck by the needle in her spine. She continued to cry off and on throughout the procedure. She has cried a little before, but not quite like that. At the time, I didn't realize what it could do, but Dr B told the nurse to give her another 10 of verced. (this is the amnesiac drug)

The spinal was done in about 15 minutes. We wheeled her back to her hospital room. As soon as we got in the room, she started throwing up. Also a new thing. She couldn't get up because of the anesthesia, so she was throwing up all over her pillow and (NO!) Bobo. Bobo sits right up by her head for every procedure. Ally has a cold and so we thought it must just be that.

For the next three hours, her heart rate stayed very high. I sat glued to that monitor tracking its every number click. I told Jerad...something is not right, I just know it. He didn't believe me at first, but soon came to realize when Ally started crying every few minutes and asking to go home. We would ask her...what hurts? what are you feeling? headache? anything feel funny? She would seem to get mad at us and just cry and say she just wanted to go home. She has never acted like this. She actually never seems to mind being at the hospital. We make it fun for her. She is like a queen there. She wouldn't eat. She wouldn't drink. She asked for McDonalds, so I ran to go get that for her. She fell asleep and then never ate it. Slowly, her heart rate went back down a little. But she still wasn't acting right. I was so so worried. I kept thinking she might have a seizure..I had read somewhere that 10% of spinals end in a seizure. Once her eyes rolled up into her head and my heart just dropped. I was preparing myself. I had been trained about seizures when my Mom's cancer spread to her brain. The nurse called the doctor back over to check her, but he said she looked fine.

So we just waited and waited for her to come back to normal. I was not going to take her home like this, that was for sure. I was so scared. This was honestly the most scared that I have been the whole time. Maybe I got myself more worked up than I needed to be, but I did not like what I was seeing.

About 3 o'clock, she sat up and started playing a game on the laptop. She just clicked over to normal just like that. Her and I were sitting on the bed playing this game together and she started making fun of her Dad. I knew she was okay. As quick as it came, it left. Ally was back. We were laughing about the game, but I found myself just cracking up. It was relief. I was elated that she was ok. Another bridge...crossed.

I walked out to the nurses station and told Miss Susan that she was ok. We were standing there looking at Ally's charts, and we figured out that the extra 10 of verced was the most that she had ever had. The nurse said it can make them either really giggly or really tearful. We concluded that the verced may have just been too much for her. Dr Broxson called to check on her when I was standing there, and the nurse told him that Ally's mom thinks she is ok now. So we got to leave. Our nice early noon departure was now looking at 4pm. But still time to swim......

We had previously planned to go up to Fox Hill and celebrate Nicki's party with homemade pizza and swimming. Ally said she wanted to go. She was finally freed of her needle and tubes after almost three weeks of being accessed. She was allowed to swim. She did not hesitate very much and went into the pool with her cousin Bella and her friend Madison. They played in the pool a while, then the hot tub, and then I hear that she is going to do the little slide. I was shocked. Wait! I had to grab the video cam so the Army can see! Here she is:



She swam more. I even saw her going underwater. This is huge. I think she was always fearful of getting her port area wet, but she overcame those fears Friday night. Next thing I hear is that she is going to try the diving board. Well, there goes my brave girl! She really is a good swimmer, and she continued to amaze me. Here she is going off the board.


And she finally decided that she wanted to try the 38 foot water slide. With her Dad holding her. They kinda put the brakes on going down, but she did it. And everyone there was cheering for her. You have no idea what it means to Jerad and I to see her being a kid again. To see her not fearful, not crying, not hesitating. Smiling. Jerad and I could just cry a river of tears when we see that.
I thought back to my panic-stricken afternoon. And how did I get from there, with my daughter hooked up to all kinds of monitors..oh yea and she just got two chemos put into her body too....how did I get from that to this. Well, only God can answer that. And I will leave it up to him. As always.

Mommy-Evan fun days (and Carly too)

From my limited experience, I can say that one thing that happens when your child gets leukemia is that your other children get jealous. Not necessarily jealous of the disease, but maybe that too, but more jealous of all the time/attention/food requests/hospital time, etc that the leukemia child is now getting. Let me just tell you right now that it makes everything even that much harder. As if I wasn't already worried enough about my daughter fighting a life-threatening disease, I now also have to spend considerable time and energy to make sure that my son doesn't turn into a punk and that my baby girl learns all of the things a 2 year is supposed to know. My time gets eaten up caring for Ally, but my "quality time" as I will call it has significantly increased for the other two kids also. (Where did this time come from...I don't know...but I haven't cooked lately, so maybe that is part of it... hey, I haven't watched a TV show EVER either) When I get a free moment, I feel a stronger urge to sit down and read them a book or play baby dolls or go do something with them...in the past I probably just spent more time on cleaning, organizing, and laundry.

In efforts to do something with them, and not in our house, I asked our babysitter Jackie to come once a week to the house and sit with Ally. They get along great together, and Ally actually asks for her to come. No guilt on that front-always good. So now I have three hours a week to show Evan and Carly the outside world...I intended on taking them to the pool every week. That's not happening due to our horrible July weather. We have done this a few weeks now. I love it and I think it means something to Evan. Carly just goes along for the ride.

Today we went bowling with friends. Evan, Caulin, and Sam are the three amigos. They are dangerous together. Really. I am worrying about high school already.

And then we went to the Greene...E's been wanting to see those fountains.

Carly actually ran the other way...check out her disgusted look.

Did you know they make marshmallow flavored sno-cones? They are awesome.Root beer is good too.

And that is how we spent our three fun hours today. I am really good at cramming a lot of stuff in a short period of time. I learned that from Jerad.

Interestingly enough, I wasn't the only one taking pictures of Evan in the rain yesterday. I opened the Dayton Daily News and saw my own son on page 3 today. Check this out.

Ally was pretty good today. She did a few things and didn't have a belly ache. We are set to be down at the hospital's Almost Home unit tomorrow at 8am. It is her last spinal for a while (maybe a month or so?) so that is a big hurdle for us. She is also getting the evil chemo...vincristin. I don't like that one. She may need blood or platelets, we never know that until we get there. She also should get freed from her port being accessed. Maybe swimming will be in her near future. Please pray that she makes it through this spinal with flying colors.

Oh, and happy birthday to my friend Nicki. I know I have mentioned her on here before...how she practically carries me around everywhere and guides me through my life. I have learned much about who I am and who I strive to be from her. Some people say their spouse is their soulmate...well I think she is my "soul friend" She has a blog too, and my family makes frequent appearances there. If you ever want to check her out... you can get a few more glimpses of our Ally.
http://remember.winger.com

More after treatment day.......

Rainy Wednesday

Well my day started out by me flying out of bed to the screams of my daughter. It was 7:30 and she was yelling. I didn't even hear Jerad leave, and I was a bit confused. She had to go to the bathroom and thankfully got some relief from her constipation issue, but it is never a pretty sight when that happens. Painful. It got her so upset that she started gagging and also throwing up on the floor in front of the toilet. Her nose has been running so drainage issues are complicating matters. I am not one that handles vomiting very well. I just don't. Ask my husband, I virtually made him sign a prenuptial agreement when we got married that he is responsible for all puke. Unfortunately, having a cancer patient under our roof is not helping matters any. So, I also started gagging at this point and broke out into a cold sweat. Some caretaker I am.

We recovered from that, but Ally just didn't have a good day. I keep trying to map out how the chemo effects her. I just can't get it!!!! It is always different and they are always giving her different types of chemo. I just don't know exactly what is going on inside her little body. I do know she was down today. It seems to me that she does okay the first few days after chemo, but then her counts start bottoming out and so does she. It wouldn't surprise me if she needed blood again.

Her little friend Madden wanted to see her. I knew Ally felt bad and couldn't do much. So her sweet friend just brought over a movie and sat and watched it with her. Kids this age...they do know friendship. They do it and we don't even really have to teach them. It must be somewhat human nature. I am learning all about it and it is precious. Her friend Madison also wanted to see her, so she went to her house for a little bit. Always good to get out.

Other than that, we watched the rain pour down all day outside our bubble. It never stopped...all day. It was quite dreary and seemed especially dreary and depressing to me today. Where is summer anyway? Once while Ally was doing this:
I took the other two kids out to play in the warm July rain. My Gramma Ruth always says you have to get out each day to "blow the stink off" so we followed her motto. My hobby..my favorite thing to do is photography. For obvious reasons this has taken the back seat lately. Lately I usually just point and click and I don't even bother with my "good" camera...but rather use one that fits in my back pocket. Today, I took out my baby, my camera, and tried to get some more artistic shots. Actually looking at the composition and the ISO and the white balance, etc. I haven't done it for months. A little rusty. When I am all done with this saga in my life...I am gonna learn. I am vowing right now that I am gonna read more, study more, maybe even get the master photographer Erin Cobb to do an online class or something. But for now, I was happy to just get a few fun shots and play a little. Grown ups need to play too.

Baby Girl, and I love her curls!...a bit skeptical of the rain and lurking in the garage

Evan making the most of the puddle at the end of the driveway..I was trying to catch the little droplets in my shot.

Soon to be five years old....my boy.

He loved the rain today. At least somebody did!

And thus, I will cease complaining about the rainiest of days. Sorry. And I will share an excerpt from the great poet Henry Wadsworth Longfellow (remember him?) which reminds me that if it were sunny every day, then we would never appreciate the sunny days.

Be still, sad heart! and cease repining;
Behind the clouds is the sun still shining;
Thy fate is the common fate of all,
Into each life some rain must fall,
Some days must be dark and dreary.

Infection is clear

Ally was down a little bit today. More tired than normal, not wanting to get dressed, etc. I still struggle a lot with deciding if I should be doing more with her, or just letting her rest. After yesterday...a long day spent doing things all day...I come to think maybe I should be doing a little more with her. It could be that her counts are "bottoming out" today. In fact, she was supposed to get a blood draw tomorrow because they think she is going to need a platelet infusion. Platelets are cells in your blood that help your blood clot. If your platelets are low, and you even get a tiny little poke (like from a shot or a spinal) you could end up bleeding a lot. Anyway, I called the doctor to set up the test and they told me not to worry about it, they would just do it Friday when we are at the hospital. So I proceeded to ask if they had heard anything about her infection and if the latest blood cultures had "grown" anything. The nurse told me that the cultures were negative. The infection is cleared! Thank god. Here I was worrying myself to death that she was going to need her port taken out, and they didn't even call to tell me about the negative result! Ah well, I am just so happy that it is gone. One less thing to worry about.

Ally's new home instructor for school stopped by this afternoon to meet Ally and also to read to her. Mrs. Brower is a friend and neighbor of ours who just recently retired from being a teacher. She is so wonderful and I am so happy that she is helping us. She applied to be a Beavercreek Schools employee just so that she could help our Ally. I truly believe that God was looking out for us when he sent her our way. She sat on the couch with Ally for almost an hour, reading her a Junie B Jones book and just talking to her about life. She even managed to get a few smiles out of her and our quiet girl even spoke!

We did drag Ally up to Dad's pool tonight again for an impromptu Synergy pool party. (Synergy is our family business where Jerad and I both work...although me, very limited) She was crying and didn't want to go, but we managed it. I know it is not much fun for her to sit in a chair and watch everyone in the pool. Even if she could swim, I don't think she would want to. I do believe the highlight for her was judging the cannonball competition off the diving board, which Kopilchak won. (sorry Todd) And who knew that Suzanne Duplain could do a back flip off the board? Impressive. The highlight for me was having some swimming races. (I swam competitively my whole life, but they didn't know that). I loved beating the boys. heehee To be fair though, we had a relay race competition. Me-Lexi touched the wall after the winners: Todd Duplain and Kopil. So congrats to those boys, but watch out next time! We are so lucky that our work friends are just like family to us. I love to go into work on Tuesdays (and I did go today) and see all of the orange Ally's Army bracelets that come and go from our office. All these big construction guys wearing orange bracelets to support our little girl. Wow.

I am having a feeling that tonight is going to be bad. Her stomach continues to bother her and she has already woken up several times. She is barely eating anything these days. (I can't even get her to eat candy!) McDonalds is about the only thing she will eat. The research nurse that we deal with actually said McD's is one of the better things for her, especially if we get her a milkshake. High protein, high fat, high calories...all good for her situation. Please pray that these bothersome side effects go away and that we can have our old Ally back. Maybe another prayer that she will actually eat something and gain some energy from it. Until later......I am off to do an antibiotic infusion. Only a few more days of this.