Jolly Holidays

We have been flying high with Izzy feeling good this month. The 5 of us are having such a great time together! In particular we have done some really cool Christmassy things:

1. Izzy sang a duet with Lorin in our ward Christmas program. I tried to upload the video...didn't want to work. They did the cutest job, standing up there smiling and singing out. Granted there was a little microphone trouble, but they handled it really well. The first verse you could hear Lorin best and the second verse Izzy announced "I want to sing too" and took the microphone in which you could hear her best. Lorin just smiled and kept singing, so it was really cute.


2. The Ross MBA Partners Club and UofM Childlife specialists were able to coordinate a Christmas Store at the Cancer Center with donated gifts and volunteer helpers to bring some "shopping" fun to the kids who's counts are too low to go to regular stores. They were pumped to pick out something for each member in their families, complete with professional gift-wrapping!

3. Izzy got invited to go on a magical journey to the North Pole with other cancer kids throughout Michigan. Cory took her to the airport where they proceeded to board a plane that took off and landed at the North Pole. Santa and a huge celebration awaited them. She was on the 5:00 Channel 2 news tonight (about 5 seconds worth).




4. Finally, you've got to check this out http://www.elfyourself.com/?id=1379704339. I have one question...who are all those cute elves?

Another Transfusion

Contrary to the way Izzy has been feeling, her Hemoglobin was at 6.1 (aka. low). So we are in for a blood transfusion today. All of her nurses and doctors are surprised as she is being very bubbly and fun. Yesterday she had a triumphant moment and exclaimed "Mom I just made it up the stairs without using my arms." A week ago I thought she was practically back to normal, but then everyday she gets stronger and does another thing that I forgot she used to do (like trying to wrestle Lorin)--it's great to continue seeing the progress. Her hair is even 1/4 inch long now! Thanks again for all the prayers and thoughts.

NO MORE SHOTS! NO MORE SHOTS! NOMORE SHOTS!

Triumph over the Biohazard jug containing all of her needles!


Monday was a day of good news for Izzy:

1. We got the call that Izzy is done with her Lovenox (bloodthinning) leg shots. She has been getting them twice a day since July 18th which is approximately 260 of them.

2. Her blood counts were up higher than they've ever been at 1,000 WBC (regular children are from 5,000 to 10,000; Izzy has been between 100 and 300 the last 2 months). We have been strictly quarantining her in our house ever since the last hospital visit.

So needless to say we felt like PARTYING! We called up friends and we all met at Jungle Java (kid's play place) and ate lots of junk food. It was very refreshing and Izzy was flying high with the chance to leave the house and play with friends.

So today we started maintenance kicking off with a spinal tap and 5 days of steroids. But all the doses are lower and should keep her counts between 1 and 2 thousand. Lots of smiles here! Happy Thanksgiving to y'all!

Feelin' Good!

Check out Izzy's smile...she's back!!!

Home! And Intense Chemo Done!

Here are some pictures to go with the descriptions of the last few days' posts:

Rash and hives

Trick or treating on the cancer floor (shortly before leaving our vampire-like blood trail :) Izzy not feeling the best here. Notice the pink cowboy boots won over the red costume matching boots.

SuperGirl all tuckered out (after this nap she started feeling much better).

Visit from the Sisters--much needed on Halloween night.

Our ice cream / popcorn / movie party to celebrate our return and end of intense chemo phase. As you can see Ryan did what she's best at and took our basement/playroom down to China Town!

Staying Here for Halloween

She really was perking up yesterday, but Izzy is feeling downright nasty today with constant diarrhea, belly aches and random fevers. The cultures are not showing anything bacterially growing, but apparently there are still spots in the body that could be hoarding an infection that doesn't show up in the blood cultures. So they don't feel good about letting her go, and honestly I don't either with how yucky she feels.

She wanted to trick or treat to the rooms with the kids though, so with some strian we were able to get her SuperGirl costume on and move her to the stroller. Things were going pretty well (she pointed to me every time she needed to say "trick or treat" so that I would say it for her), but then one of the connectors on her Port tube broke apart and we were half way down the hall before anyone realized the blood trailing behind--nice Halloween surprise. If only she had been a vampire it would have all fit together a little better, but SuperGirl bleeding? Com'on :)

We hope she feels better soon. I'll keep you posted when I can. (I'll post pictures when we get home)

Hospital Update

Izzy is having a hard time with some phlegm in her chest and a hacking cough which caused her to need oxygen while sleeping last night. Thankfully though, the bloody noses have subsided and her fever has come down a bit through the night. She won't eat anything still (I think 2 bites of pancake was all she had yesterday), but is drinking plenty of water.

So, we're really hoping that the fever will go away and that we can head home before Halloween and at least party together at home since outdoors isn't going to work for her. But just in case, we have her SuperGirl costume with us--nothing cuter than a bald supergirl, right?!! :)

As for Izzy's morale, she is chatty-chattin' with me nonstop and loving me to rub her head and feet with lotion. When she is gagging and puking she says (almost everytime) "this chemo is really so hard....I don't love it." I think that's way cute. One of the student nurses this morning was sad when she saw Izzy telling me I could go ahead and give her the Lovenox shot in her leg (still bawling) and trying to hold as still as she could. Her strength is inspiring to me.

Thanks for your offers to help--I'll be calling you real soon I'm sure :)

ER / Hospital stay

Well, I spoke too soon yesterday with my blog. Izzy developed a 103 fever in the night. With her white blood cells at 200 and her platletts at 5 they promptly admitted us (3:30 a.m.). If it is that infected thumb, the antibiotics they are pumping into her (7 doses a day) will take care of it.

A couple of concerns: with her plateletts so low she has been bleeding from the nose every time she coughs; and she reacted to something (one of the meds or the platelett transfusion) with a rash and hives. Hopefully both of these things will be cleared up soon. The doctors act like they've seen both enough that they are not too worried.

We've got at least 48 hours here either way. Thanks for your concerns.

Super-Girl

Izzy has done an amazing job recovering from steroids and fevers. Fittingly, she wants to be Super-girl for Halloween and her cute Daddy paid handsomely for the costume (jk, it wasn't too bad :). Stay tuned for after-Halloween shots of that.
For now here is a cute one of her deflating (from the steroids) and feeling better. ***I should have started this long ago, but better late than never...new game: FIND THE HIDDEN CRAZY STUFF LORIN IS DOING IN THIS PICTURE***


Her counts are still very low however, and as a result any little wound is having a hard time healing. Here is a picture of her thumb which, ironically enough, was hurt by a hospital bed. After almost 2 weeks and lots of bandaids, it looks nastier than ever.

Home Sweet Home

They freed us! I was actually a bit surprised as Izzy woke up after an endless night with a headache and a belly ache; her leg had a problem clotting after a blood-thinner shot; and her fever is still there, though minor. But the cultures they drew didn't grow any bacteria and so we will give her Tylenol until the virus goes away. All in all she is playing and feeling pretty good. Didn't want to leave you all hangin'. But I'm signing out with a quick blog and no pictures :) Thanks again to all of the help and love.

Hospital Time

Another (at least) 48 hour sentence has been issued by the docs due to a fever that occurred during a blood transfusion (which obviously means her counts are way low again). So we have been here at the cancer center for 7 hours (all inclusive platelett transfusion, spinal tap and chemo) and await our room on the 7th floor where we will spend some more quality time while they make sure her port is not infected or something of the like. It's been a while. A hospital stay was predicted for this last intense month. We're holding out for November. I'll keep you posted! (Kerri)

Bye Bye Hair

It happened all of a sudden, but a few days ago Izzy's hair really started to fall out. Kerri would run her hands through Izzy's hair, and it would come out by the handful. Today it started to look extremely wispy. So with the incentive of going to buy a toy, Izzy had us shave it off. She looks way cute. Her new look was definitely a shocker for us. But we knew that she would take her reactionary cue from us so we've been telling her how cute she looks non-stop. Here are some photos of her new look and some of the hair alternatives. Thank goodness she has her mom's shapely skull.

Quick Hoorah!!

Just a quick note to say that Izzy ended steroids Tuesday morning, and within 36 hours I could tell she was feeling better. Before she could not sit up on her own or focus on anything for longer than a couple of minutes, but yesterday she sat around the table coloring and learning her letters for a good 45 minutes. Lorin is very happy to have her playmate back a bit. As for the eating fetish....we'll just say it's come down a hair from her most feeding frenzy moments. Non-steroid moments are a beautiful thang! :)

6 more doses

We are almost done with these dang steroids. Izzy is trying desperately to keep her chin up while dealing with constant diarrhea, belly pain, and extreme hunger. She prefers laying on the couch dawn 'til dusk and puts up with some stroller walks to the park even when she tells me "I don't need any fresh air." Lotion foot rubs are her other form of exercise :) But we are rounding the bend to a steroid-free existence once again and hopefully the lucky "Buddha belly" rubbing will bring some new energy.

Other than a port-poke for a quick blood draw, she gets a break from treatment this week. Starting on October 2nd we've got a month left (including 2 spinal taps...ugh!) before Maintenance begins (which will feel like a good dream...yeah!!).

As always, we appreciate all of you and know your positive vibes are coming our way.

Steroids redistribute weight to cheeks and belly as well as cause some swelling (and of course with all the eating, she has gained about 4 pounds which is good--finally back to pre-Leuk weight)


Between low platelets and blood-thinner shots she can be a pin-cushion for Halloween :)


Cancer sisters at the cancer center. Morgan (left) and Izzy are good friends.

Steroids...all the "rage"

Steroids hadn't hit yet at this fun shot of a carnival ride.


Wow! Some major flash-backs to the beginning of April. Izzy has been on Steroids again now for 12 days. Major irritability, extremely tired, and her belly is so swollen she looks pregnant--it is hard as rock and yet her brain tells her that she is still starving, so she eats. It is the craziest thing...she starts talking about what she ate on a certain occasion 2 months ago and how yummy it was. Her mind is consumed by food. She wakes up in the night deciding what she wants to eat come morning. And then she sits there groaning that her belly hurts.

I asked the doctor what exactly the steroids do for her and he simply said "it is a chemotherapy." He commenced to tell me that it is one of those parts to the protocol that they don't fully understand what it's doing; they just know it plays a key role in wiping out any hiding cancer cells still looming in her body somewhere. So, we feel a little like it's the blind leading the blind. Then again we want that 85% chance that she will make it through this.

So we are in a bit of a valley as she screams (literally) for more food (e.g., mac n' cheese, pizza, and cereal all before 8:00 in the morning) constantly. If we remember to laugh instead of cry (or worse, rage back), it works a lot better.

Or if we remember that Make A Wish is sending our family to Disney World in February, it can help a bit :). The rep called and worked out the details just recently. Afterwards I told Izzy I was talking to her Fairy Godmother. Her eyes got so huge as she smiled in disbelief and said "I have a Fairy Godmother?....what color is she...blue or pink?" We had the cutest conversation.

September is Childhood Cancer Awareness Month. Here is a video that is worth watching: http://www.youtube.com/watch?v=AGS4yE5v9rM

These four ladies work at the cancer center doing all the behind-the-scenes grunt work. They bought Izzy this tile that she could turn into a work of art and it will become part of the new Children's Hospital when it is done. They love Izzy, and we love them!

Last Phase of Intense Chemo (2 more months)

We are back in Ann Arbor with Lorin and I starting school today, Kerri and Izzy at the cancer center and Ryan with a babysitter from church. We are busy again but excited about our last year here in Michigan. ...nobody say anything about the Appalachian State game...


We had a great time in Idaho a week ago visiting Kerri's family. Izzy was feeling really good and had a great time with her cousins, riding horses, riding four wheelers and chasing chickens. I had a great time getting bucked off of a pony. If you are feeling up for a good laugh at my expense you can check out the video here.




Izzy is in her last phase of intense chemo. The phase will last about two months. It could be a really tough one for her in that the doses of chemo are heavy, she is back on steroids and she is still getting her twice a day blood thinning shot. The steroids will likely cause a similar swelling (redistribution of her fat) in her face and stomach as the first steroids she took did. However, we are extremely grateful that she is doing so well and that we are close to being done with the intense chemo period of her treatment.

Trip to the Hinterlands and West Coast of Michigan

We just got back from an amazing trip to Western Michigan. A family whose daughter passed away of a brain tumor has a cabin with 5 apartments there in a little town called Wellston. The family lets families who are going through similar trials come and stay for free. It's called Little Mary's after their daughter. The cabin has a large playground and a small lake with a dock and boats. Needless to say, fun ensued. Thank you Maurine and family.

Izzy's counts have been higher through this phase of chemo, so she was feeling well and able to do a ton. We went horseback riding, canoeing, paddle-boating, swimming, dock-diving, etc. It was fantastic.

Izzy has her next chemo day on Monday of next week. We are getting so close to the end of the intense chemo, about 6 weeks left. This trip made us realize how great it will be to have her feeling better.

High Counts, Low pounds

We were happy to find Izzy's counts relatively soaring yesterday. March through May she had about a dozen transfusions between platletts and blood and in June she had about 6 transfusions. But her body is finally picking up the pace and she hasn't needed any blood or platletts for July and August. Now we just have to figure out how to get her to gain some weight. She was at her lowest yesterday...25.7 pounds (Ryan weighs about 24 right now) and her 3T shorts drop to her ankles when she runs (it's actually really cute). The problem is nothing tastes good to her anymore and I guess that's common through this phase. So I let her have a dinner of brownies if that's what she wants. Extra butter, tons of cheese, chocolate milk galore, and full meals at bedtime. I'm sure the rest of us are gaining the weight she's losing :)

So to celebrate high counts and feeling good we FINALLY took Izzy to Chuck E Cheese. Since her first week in the hospital back in March she has been wanting to go. But low counts and scuzzy arcade games don't match. So yesterday was a huge treat for all of us (especially when high on excessive hand-sanitizer and clorox wipes). And Izzy ate 2 1/2 peices of that good 'ol Chuck E Cheese pizza...another win!

I also wanted to thank all y'all again. We have continued to recieve abundant donations, amazing gifts, and dinners sometimes 3 times a week. We could not feel more grateful for the constant show of emotion and generosity. Thank you thank you thank you!

Another Cancer Center Day Down

The Cancer Center has become a happy place for Izzy. She particularly loves to see Jessica (picture), a Childlife Specialist, who has been known to tell knock-knock jokes with Izzy for 2 hours straight if that's what she wants. Back in March I thought she would never become one of those kids playing happily between infusions of Methotrexate and Vincristine, but she has and it is so refreshing to see. It makes cancer days doable.


On a solemn note, one of our cancer friends, 5-year-old Gavin, spent his last day at the cancer center. He has had 3 bone marrow transplants, and they are not working. So "team Gavin" (his main nurses and doctors from the last four years all have a team shirt) sent him home with a hug and a smile but unfortunately not much hope for him to live out the month. We are constantly reminded of how wonderful Izzy's prognosis is, not to mention how great she's doing now. But we wish the reminders didn't come at the despair of others sometimes.

Her shots are almost tear-free now which is amazing. Her counts are staying high enough to continue. She's loving to swim, ride bikes, and play with the sisters. And riding Daddy like a horse is at the top of her list right now--it's great to have him home again :)

The Art Fair and Shot Practice

On Friday afternoon, we took the fam to the Ann Arbor Art Fair. It was a lot of fun walking on campus and downtown with the girls checking out the exhibits. The girls even spent some quality time in a fountain.



The blood thinning shots that we have to give Izzy every 12 hours to prevent seizures have turned out to be pretty horrific. Our system is to have Izzy in Kerri's lap. Kerri holds her/pins her down while Dad administers the shot. We got some advice on the least painful way of giving it to her, but to be sure I made Kerri practice on me. She tried a couple of different ways of poking me with the needle. Then Kerri might have ;) injected the blood thinner, and the blood thinner might have ;) burned like the devil himself stuck me with his pitchfork for about a minute. The poor kid has to go through it twice a day. Below is the shot of Kerri practicing, and my legs are not that white in real life--curse you camera flash. :)

Seizure Pictures

Cory posts... Great news. We got Izzy home from the hospital, and the test results came back that there was no permanent damage from the seizure. Here are some of the pics from the last two days and one of the freakiest pics you'll see of the 911 team--they did an amazing job--and Izzy in seizure. (See last blog post for details)

911 team and Izzy's hollow stare during her seizure


The EEG test to make sure that the seizure wasn't still happening


Scarfing down some soup after the battery of tests was done today