Monday, January 24, 2011

Weekend Swim Meet

We have been busy here lately. Ally seems to be getting a little better...at least if I keep track of her complaints about belly pain. She was complaining all of the time, numerous times a day. Now she has mentioned it only once in the last couple of days. Regardless, she will go in Friday to get some liver blood tests done. Bummer for her because they have to take that blood out of her arm. Usually if we are just doing a CBC (which she does ALL the time) they just do a finger prick. She is pretty brave about it though and I am praying for some good numbers to come back.

After struggling a bit with swimming last week, she went to her first "away" meet this weekend down in Middletown. She did FANTASTIC. She took several seconds off both her 50 yd backstroke time and also her 50 free. She had been working on her flip turns with Coach Rob and I think the work paid off. She was EXTRA excited about this meet because both her teacher and her grandparents were coming to watch her race. I think she got 4th in her heat for back and 3rd for freestyle...we are not in it to win any races though. I just tell her to keep improving her time. She has worked really hard on her swimming, and honestly with three days a week of practice she is ready for it to be over. However, I will attest that it could possibly be the best decision that we have made throughout the process because it strengthened her and also helped her to keep her steroid weight down (most of the kids suffer from weight gain):
Here she is doing the freestyle:


Here she is with Grandma and Grandpa: (they also babysat that night so we could go out for Bob Winger's 40th birthday celebration. Thank you!)


And here she is with Mrs. Torbeck. Seriously, how many teachers go to their students swim meets? Ally was super excited and we were super grateful. She is a lucky girl.


We have also been busy working on the science fair, going to birthday parties, and playing in the snow. We are always mindful of how perfect a "regular" schedule can be...never forgetting the lack of schedule that we suffered with for a year. We also had Evan come down with a fever, but thankfully Ally has been spared so far from it. It still necessitates a trip to the hospital for us, so we try really hard to avoid all illnesses. Although I have kinda learned that if she is gonna get it, she will get it, so I don't go too crazy with isolation tactics and/or cleaning.

We have also had some fun playing in the snow. I LOVE SNOW! However I am kinda ready to be done with all of these snow days already. Dad has a big sledding hill up at Fox Hill that we love. Also, wanted to say that Dad is doing much better these days. He is home from Cleveland and has been feeling better. We can only hope that it will stay this way for him.
I think we have almost this same picture from last winter. Setting up a self timer shot in the snow = not easy.





I love this shot of my girl. Snow makes for the most perfect backdrop and light reflector!


One small thing that I failed to mention last week, but it was a huge deal to us! Our WSU Raiders beat the Butler Bulldogs. Remember the Bulldogs who were in the (ahem) National Championship last March?? We beat them. We love the Raiders. They have always supported Ally and she supports them right back. Check out these signs that her and Madison created:





And again, sorry Mrs Torbeck about your Bulldogs. (We've been seeing a lot of her lately.) She was still smiling here because it was halftime.


At the end of the game the students had stormed the court and I had lost my voice.



Fun times.


- Posted using BlogPress from my iPad

Tuesday, January 18, 2011

Quick Update

Just a quick update. Dad got the first of his meds last night about 9pm. He got some more 12 hours later. He is probably due again any minute. I wasn't able to talk to him today...they asked for no phone calls/texts so that he would remain calm. I did get a note that his heart is in rhythm. So that is good. Whether it will remain that way or not...only time will tell. It seems encouraging to me, so I will take it.

Ally's pain has moved from her belly to her head. She is really struggling with swimming now, but is keeping at it the best she can. She is a very strong girl all things considered. She actually has another swim meet on Saturday and I know she is excited for that. Her Grandparents are driving down to watch her! I think her head is hurting mostly because she just today finished her five day pulse of steroids that she gets every month. Steroid week is never fun for us. Overall, she is a good girl and does not get into the angry stuff that I often hear and read about. We are lucky to dodge that bullet. She definitely eats more and her cheeks get all red and puffy. I am glad another steroid week is past us.

Thanks to all for the prayers. They are working.

Monday, January 17, 2011

Update on Dad and Ally

Hope everyone enjoyed MLK day today. And thanks for all the comments on Ally's piano concert. I may have to put more videos out there!

Our MLK day did not go exactly as planned. Dad was due to have his heart ablation surgery today and had driven up to Cleveland yesterday. Long story short, they could not do it because his blood was too thin and it would have been too risky. However, one of the other options, that he previously had dismissed, was using a medicine therapy to get his heart back into rhythm. The reason he dismissed it was because it required a 4-5 day inpatient hospital stay for monitoring as they gave him the medicine (sounds very familar to Ally's methotrexate hospital stays). So anyway, he changed his mind and decided to go ahead and give this a try. So now he is checked in to a nice room at the Cleveland Clinic for the remainder of the week. Barbara and my aunt and uncle are up there with him. I did not go up for the procedure, but now am wishing I was there because I just can't get enough of hospitals in the last three years. No really...wishing I was with my Dad. Lots of prayers are going up for him and I am still not unclear as to whether I will be in Cleveland sometime this week. (And special thank you to my blog reader....Maria...who I don't even know but lived up by the Clinic and offered to help...wow that is a wonderful person.) I keep reminding myself that everything happens for a reason and that this must be part of God's grand plan.

And Ally...well Ally had her chemo on Friday....and IVIG and Pentamadine. We thought we were getting a light day by only being at the hospital for five hours. Five hours to us is like nothing. Her ANC was 1300. Just perfect. We did talk quite a bit about Ally's belly pain that has persisted for over a month now. We could try more miralax or more prevacid...but he also wanted to check her liver numbers again. We thought all was well until we got home and got the word that her liver enzymes are high again. Sigh. Of course, noone knows what this means...and the liver processes everything out of your body so it is just hard to tell the source of the problem. They are running some liver blood tests on her next week to see if they keep climbing. I am just going to pray and keep my fingers crossed that this is just another side effect.

Sometimes I just think that we have to get to the end of her treatment. Next Fall. And then all will be good in the world. And then I step back and take note of all the long term side effects that these medicines can cause her. They are not good. This is why they will be following her for 20 years. The meds saved her life. But they changed her life too. Well this whole thing did.

And at that I will sign off another medical update by asking for continued prayers for both my father and my daughter.

Thursday, January 13, 2011

Piano Concerto

I thought some of Ally's Army might like a little video performance by Ally on her piano. She had asked for years to try it. We started lessons back in September. She has been a quick learner, as she had no experience at all. Her teacher is really wonderful. She goes to the Piano Preparatory School. Ally's Mom is unable to help, but would also like to take lessons at some point. Anyway, I thought some of the family would like a short concert (and also to see her ever-growing-longer-and curlier hair). The piano was actually my Mom and Dad's piano (but they didn't play either) but I feel very blessed to now have it in my home.

video

We are heading to the clinic tomorrow for chemo. We should be there almost all day with her IVIG infusion and antibiotic infusion also scheduled. Her stomach is a bit better but still hurt pretty much all month. We will discuss with Dr B. Her cough is better thanks to Dr Matt and good old amoxicilian.

Tuesday, January 11, 2011

Tuesday

Ally is not feeling so hot these days. Not horrible, we have obviously seen much worse, but her belly has been hurting for a couple weeks now. Off and on. On and off. I can't really peg what/when/why/how it is caused. I was thinking it was drainage from her sinus infection, and I guess it still could be....but she seems to be a bit better as far as that goes. It is the story of our last 20 months. The belly pain is the one constant that we have always had to deal with.

Jerad and I debated taking her down to the clinic today. She has to go Friday anyway (for chemo) so I was hoping we could maybe holdout. Not that I want her to suffer, but also not thinking an answer will suddenly appear and cure her. Her liver numbers were a bit high in December, so I would like them to check those again.

I don't like worrying and I am back to doing it again. As I write this, she is actually outside in the snow! So that is a good sign. But yesterday I had to pick her up from school early because it was hurting her (and that was after I had already taken her a Zofran in the morning)

Dad is heading to the Cleveland Clinic on Monday. He is having a heart abalation surgery done in order to try to help his atrial fibrillation. He should only have to be up there about two days. Of course, I worry about that too and would appreciate any prayers for him. It is eerily similar to what we did exactly 3 years ago. Dad's surgery at Cleve Clinic is Jan 17th. Mom's surgery at Cleveland Clinic (quite possibly the worst day of my life) was exactly three years ago on Jan 18th . I can almost break out into a sweat just by seeing the Cleveland Clinic logo. You think I am exaggerating, but I really don't like it. Too many bad memories. So hoping this time...the Cleveland Clinic can fix one of my parents.

Another week of healthcare stuff is coming. I will just brace myself and keep on.

Saturday, January 8, 2011

The Big Easy

Back in the fall I was at an Eagleseekers charity auction, and on a whim I bought a sports package. Basically, you could attend all kinds of various sporting events (All star games, world series, PGA events, Bowl Games, etc) and they would also book three nights in a nice hotel for you. I wasn't sure I would ever even be able to use the package, but it was for charity and Jerad had told me to "buy something"
Fast forward a few months, and the Buckeyes earned a spot in the Sugar Bowl. Jerad suggested going but I still was wary that it would never work out. Not to mention that it is so much prep work and stress to leave the kids. It's enough work to leave that it makes me question if it is worth it. But.....We did it! And I am so glad we did. We went down to New Orleans for two days and we got to witness one of the best bowl games I have ever seen! We were able to leave the kids thanks to Miss Lisa, Miss Jackie, my sister and my friend Laura who all pulled together to help us work it out. Thank you all so much. Jerad and I were very grateful to have a couple days away.
So two days without kids....we crammed it all in! I am married to Clark Griswold, remember? We walked up and down all the streets of French Quarter, even running straight into the Sugar Bowl parade by accident.
We went to the famous Cafe du Monde for beignets and coffee....wow they were so awesome.
We toured the St Louis Cathedral, went on a historic tour via horse and carriage, toured the Garden District neighborhood filled with old plantation homes, rode on a streetcar, and saw the VERY OLD Lafeyette cemetery where the graves were above ground.

We also relaxed and got massages and ate at some really great restaurants, including Emeril's NOLA. Several times we just sat on a balcony and had drinks for lack of anything else to do. Great people watching in New Orleans. Finally, of course, we also participated in the whole Bourbon Street night scene...trying out the famous Hurricanes at Patti O Brien's outdoor bar and we may have acquired some beads (not having to do anything risque to get them.)

The coolest part was the night before the big game Bourbon Street was like the biggest pep rally on Earth. Everyone was wearing their gear. Time and time again fans would walk by, see our Buckeyes stuff, and say O-H. To which we replied I-O. And the Arkansas fans were constantly breaking out into their wild hog call, which went something like Woooooooo. Pig. Sooie! (while raising hands in the air and wiggling fingers.) Hang on Sloopy was blaring out of all the bars at various times and you could sense some major excitement in the air leading up to the game. People. Were. Into it.
We ran into our friend Stephanie, who granted our Special Wish, down on Bourbon.
The time finally arrived to go to the game. Y'all probably don't know this. But it is customary to wear a feather boa to the games down in N'olans. So, when in Rome:
I got one. Masses of people flooded into the games. Everyone walking! (so different from any game I have ever been to when the traffic backs up) And Ally's Army officially made it to the SuperDome.
Our tickets were supposed to be upper deck, but the group we worked with upgraded us and we were in the corner in the 25th row. Awesome seats! I do have to say I believe the stadium was about 75% Razorbacks and maybe 25% Bucks. Possibly 70/30. Those hogs were loud too. Someone said the state of Arkansas was deserted because the entire population came to the Sugar Bowl. They had a bunch of cool cheers and were honestly so sweet and courteous that I will now be a closet Arkansas fan. They were just glad to be there.

I did get very sick of hearing one cheer throughout the two days: SEC! SEC! Everyone would chant that because the Buckeyes were 0-9 against the SEC in bowl games.

Not anymore baby. The Buckeyes pulled it off. It may not have been pretty. I may have been nervously standing and praying the entire second half. I wanted my investment to pay off and I wanted our trip to end on a good note. When the punt got blocked...UGH. But a sweet interception and the Bucks knee-d it out. They WON. And then the chant started again. SEC! SEC! This time by the scarlet and gray. I will never forget the game. (My husband was proud of me because I watched every play....)
We got the winning score in this picture, but you can't see it probably.
Terrelle Pryor thanking his fans. After the game he apologized to Buckeye Nation.


We did not celebrate on Bourbon Street. We had to get up at 5am the next day because we wanted to be home early for the kiddies. We had a great trip home and got to see their smiling faces. We all survived it without a hitch and for that I am grateful! For some reason, within an hour of being home, we had seen five spills at the kitchen table. I asked Jerad if they were always this loud? Ah, back to reality.
UPDATE on Ally:
Poor girl has been suffering with a cold/cough for about three weeks. It's been infringing on her comfort and her sleep and her swimming. I finally called down to the clinic because it had just been too long. But really, it has nothing to do with her leukemia, it is just a normal childhood illness. So, for the first time in 20 months, we went back to our regular pediatrician for Ally. It was so strange for us, but good. He is a very caring man and they were so kind to let us in the side door and take us at night when there were very few patients there. He diagnosed sinus infection and put her on an oral antibiotic. She has only had a couple days worth but I do think it is working. Friday is chemo day again. The month goes by so fast and before we know it we are back.

If you have read this far, you have made it. Sort of rambling today, but excited to jot down some memories from the Big Easy. Thanks for following our story.

Saturday, January 1, 2011

Ice Skating!

Wow. It is as if I have fallen off the earth as far as my blogging. We have been super busy doing a bunch of holiday things. We are trying to enjoy holiday break as much as possible. We had the most wonderful Christmas this year. Everyone was well and we were HOME! Once you spend a Christmas in the hospital (and we have actually spent 2!) really anything you do for Christmas is just perfect. The kids were beyond thrilled and all the magic of Christmas was truly evident in all three of our children's eyes.

We spent a lot of time with our families and our friends and having parties and watching WSU basketball. But the highlight for my kids (and me!) was the day we decided to go ice skating with our friends. I was hesitant. And I do think Dr Broccoli would NOT have been happy that we took Ally. She is generally more prone to broken bones due to her steroids. But we did it and we held onto her tight and made her go slow! All three kids started out slow (its hard!) but then picked it up and by the end of our 90 minutes there they were doing pretty well. Luckily Jerad and I can both skate so we could hold them up. The cutest thing in the world...and I will honestly never forget this...was Carly. She had these little white skates on that a friend had bought for her a while ago (Thanks Pam). Well she looked adorable but I thought she would be too scared to even go out on the ice. OH CONTRAIRE. She went out. She held onto Jerad or I for quite a while and we would skate her around by holding onto her hands. But eventually she ASKED us to let go of her hands and there she went. Her little three year old body was walking, half-skating around on the ice. She was SUPER proud and was beaming from ear to ear. It was hilarious and cute and again etched in my memory! I could just squeeze her!

I have more pictures, but for now I will post the picture of all of our friends that went (since Nicki emailed it to me!) It was so much fun for me and my kids are begging to go again soon. We will! Check out Car Car's skates! And her new Hello Kitty hat from her Aunt Gail!

Oh yea, Ally made it out of ice skating with no injury. Always a plus. And it makes our lives seem a little more normal. We said a prayer of thanks on our way back to the car.

Happy New Year! 2011 is setting up to be a great year. We have a few trips planned and God willing it will be the end of Ally's chemotherapy regimen. September.