I forgot to download my new pictures so I will do that later this week. The Bone Marrow Drive was disappointing. We had eight donors. I know that it is eight more than we had before it but I was expecting more. The cost really seems to put people off. I want to thank everyone that came out to help with the drive. Jason's Mom, My Mom, Jackie, Vicki, Sandy, Laura, Chris, and most of all Rick from NMDP for being so nice about the lack of donors. And of course our eight donors.

Anyway .... Dani is pulling up!!! She is getting so big and was such a ham yesterday. Gabe and Ethan were grounded this weekend from the game and tv so they spent a lot of time with her. She loves her big brothers!!!

I can not believe how the weather has changed... I was actually thinking about decorating for Halloween this weekend. I got quite a bit of cleaning done. I figure a little every weekend and I might be in pretty good shape by the time we have to go to the hospital. Nothing like Spring cleaning in the Fall! We are getting the ducts cleaned Wednesday and Jason's Uncle Ed is coming that afternoon to help us with a few plumbing issues.

That is all I can think of for now. Hope you have a wonderful week.

BONE MARROW DRIVE TODAY!!!

It has been slow so far... The first 20 are free ... please come down!!!! Give a precious gift and save a life!!!!

Just wanted to remind everyone about the Bone Marrow Drive Saturday from 10 - 4 at the James Eagan Center in Florissant. Please consider becoming a donor if you have not already. You are saving a life!!!!

The family is doing well. Jason and I are trying to get everything set before going into the hospital. I have a feeling we wont have time for anything once October pulls around. I want to get a family photo in so maybe I will work on that this weekend. Hope you all have a nice weekend and hope to see some of you at the Drive!!!

New Info

Ok ... Here is what we found out today

Oct 10th - Miss Dani will be tested for Kidney Function and full X-Rays. It will take about 5 hours.

Oct 13th - (This is the scary one) She will be put under and they will draw Bone Marrow and do a biopsy. Also they will do an echo and EKG to check her heart. We will also be told what we can and can not do when we are in for the transplant.

They are predicting for now she will have her campath (like chemo) sometime between the last two weeks of October. They went over the dos and donts today for our stay and the complications. I dont know why (because I have been studying this for awhile now) but it kind of caught me off guard today. To actually think of Dani going through this. I guess as the time draws nearer ....

For all of you locals do not forget the Bone Marrow Drive Sept 23rd at the James Eagen Center in Florissant from 10 am to 4 pm. There is a charge of $25 for the first 100 and $55 for everyone else. It is your chance to save a life ..... please consider being a Bone Marrow Donor!!!!!

Donor Activated

Hello,

We just got the call from Children's and they have activated the donor. So we will have more information in a week or so. Still looking at the first round of chemo mid to late Oct and the transplant beginning of Nov.

In other news...

Dani is doing wonderfully. She loves to watch her brothers. She thinks they are soooo silly. Her hearing test went well. She went to the peditrician for her 9 month check up and that went well also. Dr. Kruesser is still concerned with her tightness in her hips and was to pursue physical therapy. I talked to our helper (Amy) at Children's and she said she will get physical therapy everyday while she is in and we can start something ahead of time if we want. She did not have to get any shots this go around because of the transplant wiping out her immune systems.

I can not think of anything more to update so hope you all have a wonderful week.

Her first Popsicle

Hi All,

First I guess there was no new developments on which 5 out of 6 donor they will take. They are still waiting on the lab to give them more data. Hopefully early next week we will hear something.

Dani went to a developmental therapist at Children's as part of the Transplant process. They put her at low average. Which to us is wonderful considering her bad eyesight and having Hurler's. They will help us while she is in the hospital to keep her as much on target as we can.

She just learned Patty Cake this week and it is soooo fun. She also is getting way too good at crawling. She ventures all over now. We are working on Itsy Bitsy Spider now and Bye Bye.

She will be having a hearing test this week. I do not anticipate any issues there but will let you know what we learn.

We have now decided that I will take leave from work during the transplant to be with Dani the majority of time. Jason will be available evenings and weekends so that I can have time with the boys and myself. It will be hard without having two incomes coming in for awhile, especially with the holidays approaching, but the fundraisers that our families did for us will help. We have a lot of family supports so I know things will go pretty smooth with any additional help needed.

I hope all have a wonderful Labor Day weekend.

The Choice has been made

Dani will be given a chance at a more normal life with a 5 out of 6 match adult bone marrow donor. Dr. Hayashi said the adult bone marrow was a better fit then the cord blood they were looking at. So the agenda is going to go something like this. They will make a final decison (between 2 different 5 out of 6 donors) next Thursday. Then once the decision is made the transplant will occur 4 to 6 weeks later.

Just to get everyone ready, the way they count down the days is any day before the transplant is a negative and any day after transplant is a positive. So the day she gets her transplant will be day 0.

Dani will need quite a few test in the next month or so. The will want to get a base line on all of her vitals. So I know currently she will be getting an MRI, X-Rays of all her bones, Hearing, Developmental, Echo, EKG, Bone Marrow, and blood test.

Day -22 Dani will go into the hospital for 4 days of chemo. She will come out for a couple weeks and then go in at -6 days and stay until after the trasplant. She will have 4 more days of chemo and then 2 days rest and then the transplant. If all goes well she will be in the hospital for 4 weeks after that.

Jason and I are trying to figure out the best course of action on us working and taking care of the family. We have some hard decisions ahead of us.

Also we will be having a Bone Marrow Drive on September 23rd at the James Eagen Center in Florissant on Dani's behalf. Currently it will cost $25 dollars for the first 100 and $55 dollar after that but we are trying to get some corporate sponsors to help with those cost. When I get more information and a flyer I will let everyone know. We were so hoping to get a 6 out of 6 match for Dani and we need to do everything we can to get more choices in the registry. I plan on this being an annual event.

Therapy Friday Aug 18th

Hello All,

Dani did really well during her Enzyme Replacement Therapy. She does not sleep like she use to but she was in a very good mood. Jason and I are going to meet with the doctors and nurses next Friday to make a decision on which donor to use. I will let you know more after that meeting.

I had a call from the city of Florissant this week and they are going to provide a facility to have a Bone Marrow Drive. They are going to call back with what dates they have available in September and I will let you all know when that is going to be. We will create a flyer and I hope you all will send it to everyone you know. We need to get more donors into the registry. We were hoping that there would be a 6 out of 6 match for Dani and that does not seem to be the case. So our goal is to make sure that the next child has more options and a better chance to find the perfect match.

Bone Marrow Drive this Sunday

Sunday, August 20

3rd Annual JoAnn Szolga Memorial Volunteer Donor Recruitment Drive

10 - 3pm

Blessed Savior Lutheran Church
1205 North Lincoln • O'Fallon, IL 62269
Phone: 618-632-0126 • Fax: 618-632-0927

Miss Dani is getting closer

Hi All,

I was hoping to have a picture from the fundraiser before posting but I have not received any yet. We had a wonderful time Friday night. The boys had a blast singing Karoke. Miss Dani and I danced and she loved it. We had awesome food and really cool baskets to raffle. Heather and Diane did an awesome job putting everything together. Erin, Chris, and Melissa slaved over the stove to get the food prepared. They do not want to see another noodle ever. I hope everyone enjoyed themselves.

Jason was told on Friday that Dani should be getting her transplant Mid Oct to Early November. We are definitely ready to get the process rolling to get her better but we are also very scared about the entire situation. Everyone has been wonderful with their support and prayers.

Gabe and Ethan started school yesterday and loved it. We will hope it stays that way. Gabe is in 4th and Ethan in 2nd. Gabe is upstairs and now changes classes for different subjects. He is growing up so fast. Ethan has the same teacher Gabe had and that will hopefully be a bonus. I will post first day pictures when I get them downloaded.

WIL 92.3 and Cardio Visit Update

If you are up and interested I will be on WIL 92.3 Cornbread in the Morning tomorrow morning anywhere from 5AM to 10AM. We did the interview today and again let me state that I am not the best at public speaking. hehehe. The fundraiser is sounding like its going to be a great time!!!

Also Dani's cardiologist appointment yesterday went really well. Her shortening fraction (shortening fraction measures and ratios the change in the diameter of the left ventricle between the contracted and relaxed state) when she was born was at 18 (they were talking about a heart transplant at that time) and has stay between there and 22. Yesterday it was at 25.4 (YEAH!!!) the low end of normal is 26!!! Her ejection fraction (a useful measure of left ventricular performance) at her lowest was 38%. Yesterday it was 60% and the normal range for a female is 55-75%. Great news all around.

So she is doing really well with the enzyme treatments. Dr. Goel did not increase her medication at this time because he wants to see if her heart improves more with just the treatments so we go back in 2 months to check it out.

Talk to you all soon

Fundraiser this Weekend!!!

Well let us start off by saying we were not too happy with the hospital Friday. Someone dropped the ball and did not order her enzymes this week. So she is missing a week of treatment. They said they would order an extra dose this time around so it should not happen again. Very disappointing to know that you are having to rely on professional to make sure your daughter is taken care of and it doesn't happen.

Dani has a cardiologist appointment on Tuesday. I have high hopes that her heart is rebounding well with the enzyme treatments. We will definitely post and let you all know.

I forgot to mention about finding a match. The hospital has results from one cord blood match and are waiting on another. They also have one adult marrow match and are waiting on another. The cord blood are both 4 out of 6 matches and the adult marrow are 5 out of 6. They will put all the results together and pick the best for Dani.

Heather called and said we have quite a few tickets available still for Friday's fundraiser. Gather your friends and come out for a fun time. We have awesome raffle prizes and the lodge itself is beautiful. The foods is going to be wonderful also. Hope to see you there!!! The details are posted on her website (Link to the right).

Two articles to mention.

New Town mentioned the benefit in July, in their August newsletter.
http://www.newtownatstcharles.com/ntCourier.html

And Sydney, a little girl with Hurler's, who is home in Illinois after a BMT has an article out about her that is very interesting.
http://www.pantagraph.com/health/

1st Tooth and Crawling

Well we had the pleasure of our first bout with teething this weekend. Miss Dani was in a fine mood with her first tooth breaking through. She is also mobile. She has the army crawl down perfectly now. She even managed to gain her first crawling injury (just a small red spot below the eye).

There was nothing new on the search. I will post as soon as I get some new information on that. If I did not mention it before they are now looking internationally also.

We have appointments set up in August and September for pretransplant testing. The August appointment is her developmental test and the September will be for her hearing. She also has a cardiologist appointment in a couple weeks.

I can not believe it is time for school to start again. I have all the boy's supplies bought and will need to go through their clothes soon. They wear uniforms so that is pretty easy.

Keep in mind the August fundraiser is coming up on the 11th. Email me if you need tickets. I hope everyone keeps cool!!!

Quick Update

Hi All,

Nothing really new to report on finding a match. I have not received any updates from the hospital. Dani did really well yesterday during her ERT. We had a pretty good storm blow through when we were there but it did not interrupt her infusion.

We have had no electric for 3 days now. Ice seems to be a high commidity. There is no end in site according to the AmerenUE map. The numbers in Florissant keep going up and not down. grrrrrrrrrrrrrrrrr . At least the weather cooled down.

Hope you all are comfortable and enjoying the weekend. I need to update about the August fundraiser and will soon. Looks like we will do prepaid tickets because we have limited indoor space. If you would like a ticket send me an email at the link to the right.

Oh... they just called yesterday and her glasses are ready. We will be picking them up Monday. They had to redo them two times so that is what took so long. The picture above is just a cute one of Dani sleeping on her Dad. Talk to you all soon I hope.

Weekend Update

Well, It was quite a warm one this weekend. Our airconditioning had a hard time keeping up. I hope all kept as cool as they could.

Friday Miss Dani decided that she was going to keep Daddy busy at her ERT. She was not the happiest but they made it through. Her site for her C-Line is swollen and the doctors checked her out. There is no sign of infection but they are going to have the home nurse check it Monday to make sure it still looks okay. She is now rolling all ways and Daddy and I think she is irritating the site with her movements. So we are going to have to do a better job of protecting it.

Jason talked to the Yvonne (Nurse Practioner) and I talked to Amy (Bone Marrow Coordinator) on Friday. They said they are requesting samples of 6 (5 out of 6) adult bone marrow matches to do further testing. They also said they found some 4 out of 6 matches from the cord blood bank. One in paticular has a high cell count and they are going to do further test on that. They said it would be a couple more weeks before we know more.

Her glasses are still not ready. Hopefully we will be able to pick them up Monday.

Please say a prayer for Syndey VanHook. She just got to go home on Friday to Bloomington Illinois from Kansas City MO after completing her 100 days post transplant. This weekend she ended up in St. Jude's with a fever. I will post her website below.

We are having another fundraiser August 11th. I will post the information on Dani's Website. This will be an indoor event and as things progress I will update here.

Also do not forget the bone marrow drive this Wednesday. The information is posted on the entry below this. Hope you all have a safe and cool week!!!

http://www.caringbridge.org/cb/inputSiteName.do?method=search&siteName=sydneyvanhook

New Local Bone Marrow Drive

There is a Bone Marrow Registry Drive next Wednesday the 19th of July from 4:00 PM to 8:00 PM at:

Trigg Banquet Center, 300 O’Fallon Plaza, O’Fallon, MO 63366-2654 Phone: (636) 240-3288

Take Hwy 70 to the O’Fallon Exit. Exit the highway and go toward Old Town O’Fallon (Hwy M/Main Street). Go a couple of blocks and turn right on O’Fallon Plaza. Trigg Banquet Center is at the end of the plaza on the right.

Samples taken via mouth swab (no needle stick). $25 charge for the first 100 people and $50 thereafter.

This marrow drive is being held for:
Jessica Inchiostro who has leukemia. Visit Jessica’s journal at www.caringbridge.org , go to Visit a Caring Bridge Site and enter her name without a space for the Site Name.

If you have questions, here are some contacts:

Cyndi Aufner 636-397-6330 (h)
636-262-1572 (c)

Marilyn Ferber 636-928-5295 (h)
314-591-4279 (c)

Thank you for the heads-up on this one, Barb Dothage.

Pics to go with the Eye Exam Post

I guess the pictures are too big and did not want to go with the post. So I made them separate. The first one is after the exam and the second one is before... go figure.

Eye Exam and Update on Search

Dani did very well today. We got up at 4:30 this morning to chug Apple Juice before the cut off of 5:00. She had to be at the hospital by 6:30. When we got there we answered the usual questions from all the doctors and nurses. You would think they have that information in her chart but maybe they are just making sure nothing is missing.

She was only gone for 30 minutes. They used the restaurant style beeper to let us know she was in recovery and we could come back. I went back and Jason stayed with the stroller. When I got back there I heard her and another little boy loud and clear. Never of them were very happy. The nurse was trying to give her Pedialyte which she had never had and was not willing to try. I took her and the nurse offered us apple juice instead. Now we are talking.

I am not sure what the little boy had done but they had used his hand that he normally sucks his thumb on for the IV and he could not get it in his mouth. BIG MISTAKE!!! He was not a happy camper.

Dani took a little apple juice but still was not very happy. We will blame it on lack of sleep, hungry, anesthesia, and dilated eyes. I can not say I blame her. They made us stay in recovery about 10 minutes and then off to get Daddy and back to Same Day Surgery. Once we got there it was formula time. So much better!!!! Dani took her medicine (for her heart) and drank quite a bit and then finally fell asleep.

While she was sleeping the opthomologist (Dr. Tyschen) came in. Dani has severe nearsightedness. Her prescription is -17 in one eye and -14 in the other. To put that in perspective I am a -9.5 and without contact can not see anything. Her first prescription was -2.5 ... how wrong is that? We mentioned having a hard time being able to keep her glasses on her. As soon as you get them on, even with a sport band, she pulls them down to her mouth to suck on. He said that was common but could be an issue with development so if it continued to be a concern we would have to look at corrective surgery. She also has minimal corneal clouding which is not a problem currently but something to keep an eye on.

We were able to take her glasses back and get new lenses ordered so that she will have her glasses Thursday. And then the battle begin to keep them on. Wish us luck ... lol

Ok .. update on finding a match. We still have not heard anything back about cord blood matches. They are requesting samples of some of the 5 out of 6 matches from the unrelated adult bone marrow. Jason and I are not to enthused with that move but we are waiting to see what happens.

Also we choose a development therapist thru the First Steps program to come out monthly and check out how Dani is doing. Those visit will either start this month or in August.

What a Wonderful Day

Oh my gosh. Yesterday was like a dream. It was amazing. We are so thankful for everyone that came out for Dani's fundraiser. Janet, Laura, and Denise did such an awesome job with everything. It could not have been better. The weather was so nice and there was so many people their wanting to show their support for Dani. Loudmouth Soup was awesome!!! The raffle baskets were beautiful. The kids tent was a huge success. I heard all sorts of compliments on the food. New Town is really neat. We had not been there before but if you havent seen it check it out. Everyone was so friendly there and the amphitheatre was really nice.

I can not thank enough everyone that contributed to the event. I do not want to start listing names because there are so many but I will hopefully have something put together soon to show our thanks.

I am hoping to find out an update tomorrow about Dani's matches and will post when I know more. Dani is going in for a thorough eye exam on Tuesday. They will be putting her under for that and I will let you know when we find something further out on that also. Hope you all have a wonderful week and I will hopefully be updating more regularly now that work is settling down and the fundraiser is over. Just a note and I will post more on this later. There is going to be another fundriaser August 11th. When I get the flyer I will let you know.

Local Bone Marrow Drive

Hey all,

I have had a lot of people asking and I am going to try to get one going but here is a bone marrow drive that is going on this Friday.

The Julie Devlin marrow donor drive is this Friday, July 7th in South County.
Julie Devlin Marrow Donor Drive
Date: Friday, July 7, 2006
Time: 5-8 p.m. (Drinks and snacks provided)
Location: Carrollwood Condominium Clubhouse
10761 Carrollwood Way
St. Louis, MO 63128
Cotton Swab Sample
$25.00 charge

I saw this on one of the local news websites.