Day +234

WBC 6.1
Platelets 266
Hemoglobins 13.7
ANC 5490
Retic 1.08
Weight 29.4
Height 33"

Dani's numbers where wonderful today. She did get her IVIG, which will boost her immune systems. She does not have to go back for four weeks. She is definitely coming to her "terrible two" stage, but we are fine with that. She really amazes us with her natural dancing skills.

Send A Prayer

Kallie is a little girl with Hurler's that had her transplant 2 1/2 months before Dani. She is not doing well and in PICU.

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

Danica's Charity Golf Tourney 2007

Here is a little view of the fun we had!

Day +228 (I think)

I just wanted to post some pictures from the golf tournament. We can not thank everyone enough for coming out and showing support and of course having fun. We had a few bouts of rain and some of us received more moisture than others (Love you Michelle!!!). I do think we all had a fun time and I heard no complaints. Janet and Darren put together an awesome event and there were so many others that helped make it a success.

Dani is an amazing little girl and she blows us away daily on how much she accomplishes and her wonderful personality. She still amazes me with not crying at all when they draw blood or even being afraid when we go into the labs. We go in on Friday for her next dose of IVIG.

Day +226 A Day at the Zoo

WBC 5.0

Hemo 13.8

Platelets 310

ANC 3200

Retic - Do not have yet

We went to the Zoo yesterday. It was really hot but overall it was a fun time. We met our friends Jenny, Chase, Olivia, and Jack. We went through the Children's Zoo, rode on the train, and saw many different animals. The first three photos are from there. The second one, Dani has a cookie in her mouth.

The last photo is Dani sitting in her basket in the dining room. She thinks that is her chair. All is fine here and Grandma Dunn is doing well with her surgery. My Aunt Dorothy passed away this week and I send out prayers for her family.

The golf tournment is tomorrow and should be pretty hot but a lot of fun. I will try to take lots of pictures to show all. A good friend passed away two weeks ago and I miss her advice and guidance. Please visit www.savesweetpea.com and take in what a wonderful Mom she was and how much she will be missed. Amy was amazing and so proactive on finding out how to take care of her little ones. Hugs to her husband and babies and I know they will use Amy's strength to get through.

Day +220

WBC - 7.1

Hemo - 13.9

Platelets 380

ANC - 6461

Retic - 1.2



It might come off as a shock to some, but today me, Daddy is writing in my baby's blog. Its Fathers Day and I wanted to post today. I so much appreciate my children. Gabe and Ethan are the best stepsons a Dad could have. I enjoy and believe that I am very lucky to have them in my life and I wanted to say that out loud today. And as far as Dani goes, I am the luckiest Dad in the whole world to have such a wonderful and special young lady as my daughter. For all that she has endured up to this point and the way she is still amazes me daily. I pray that she continues to move in the right direction past all of the doctors and needles and medicines and that she begins to live life free of all of this at some point. I have big dreams for her. I dream about her first days of school, and playing with all of the other kids. Going to her plays or games. Dances, dresses, driving lessons, college, marriage, and grandkids. In a Perfect World!
But as long as we continue to take this day by day, minute by minute I am happy. Because I dont want to miss a thing. Not a single thing. I love you Dani, more than life itself baby. You are my sunshine and my star. Kissess and Hugs.

I wanted to also let the world know how much I love my wife today as well. See I got so lucky that Fathers Day this year happens to be Kelli and my 2nd Wedding Anniversary. We had a great dinner last night and I really enjoyed spending time out with her just the two of us. Kelli is a very special woman and I am a very lucky husband. She is exactly what Dani and the boys need and she does so much to impact all of our lives daily. She may never really know how much we really count on her, she deserves so much more gratitude and appreciation and I hope that all of us can live up to the task of repaying her for all that she does.

Well you may have noticed all of Dani's counts look better, and lets keep them getting better! She was taken off her Dijoxin for her heart this week and starting tomorrow she will be weened off of her Lasix for her heart too. And the steriods are continuing to being weened too so very happy for that too. She has lost her Predisone belly and chubby cheeks now and she is looking more like herself. She gets around much better too without all of the extra stuff. She is being very vocal these days and its only a matter of time before she is talking IN ENGLISH..haha. I am scared.

Well I will let Mom post more if she likes and I am going to finish watching the Nascar race now. Happy Fathers Day Daddy Boni and Daddy Dunn!

Day +212

WBC 4.4
Hemo 13.4
Platelets 393
ANC 2464
Retic - Did not get yet


Dani is doing well. She is still trying to cut molars and has a runny nose but otherwise all is fine. She is showing her stubborness and temper which is good (in most cases ;) ) She went to her cardiologist visit yesterday morning. Her heart is pretty much the same. We are probably going to put off her heart surgery until next summer because of new findings with the American Heart Association. We are leary of her being put under 3 times in such a short time and we can not do the eye and heart surgery at the same time now. We are going to start weaning her off of some of her heart meds next weekend and see how that goes. She will go back in about a month for another echo. She will also continue to wean off of her steriods.

We are very excited to have Ethan back home after being at his Dad's for two weeks. Dani has been chuckling a ton today with him.

In our small world Innis, our guniea pig, passed away yesterday. I think I was more effected then the others. He was my first pet that I personally have lost. I feel guilty because I have been waiting for his demise just for the fact that there is so much to take care of around here. We have the 3 kids, 2 dogs, 2 cats, and at the time Innis. Plus of course the house and job (what limited time I get to go there). He was having issues last weekend and I thought he was getting better but yesterday he could not even move. I gave him a bath and cuddled him in a towel for a bit. Gabe and I had to watch him slowly pass on and it was hard. Gabe, being 10, seemed less effected than I, he was asking about getting a mouse already. There will be none of that.

Day +204

Thursday's MRI went well. It was not the funniest time either I or Dani have had but it could of been worse. Dani was a trooper and never griped about not eating. The worst part for me was walking into the MRI room and her being happy as a lark about sitting on the table in the bright light and then watching her eyes roll back in her head after they gave her the drugs. I really would prefer not going through that again but if it helps her to be comfortable than I will of course.

WBC 5.8
Hemoglobin 14.5
Platlets 373
ANC 4466
Weight 29 lbs 1 oz
Height 33 inches
Retic 1.44

Her numbers were awesome this morning. She got her IVIG so that hopefully will help her WBC go up. She does not have to go back to clinic for 4 weeks. We are very excited. We just have to go to the local Quest labs to give blood on Fridays. She did well today for not having a nap and all.

We saw the eye doctor and they are scheduling the muscle correction surgery now. We are hoping to get this surgery and fixing the hole in her heart at the same time. We shall see. We go back to the cardiologist next Friday. They will measure her eyes while she is under and figure out exactly what she needs for the Lens Inplant surgery.

The videos below are her tap dancing and her telling you what a Cow says. She just learned that yesterday while waiting at the hospital.

http://s5.photobucket.com/albums/y199/rdhdtrue/?action=view&current=tapdancing.flv
http://s5.photobucket.com/albums/y199/rdhdtrue/?action=view&current=mooooo.flv

Day +202 Our Agenda

I hope everyone enjoyed their Memorial Day weekend (here in the US :) ). We did for the most part. Dani and I laid low and spent the weekend at home. She finally cut two molars and is working on a third. She had a fever overnight Sunday night into Monday. I was hoping it was just the teething and I think it was. You could tell she did not feel good though. Poor baby. She has created some new words, but we are not sure what they mean. But at least she is trying. I made her watch racing all day Sunday (instead of dancing to music). I am hoping to convert her early. hehehe

Jason and the boys went camping overnight Sunday into Monday. They fished and caught tabpoles and such. They love going and sitting around the campfire. Ethan was attacked by every bug known to man so he enjoyed himself immensely. We BBQed on Monday and just took it easy. It was fun. Jason and I have really been working on the house inside and out. I will post pictures of all the flowers we have planted and the bar downstairs that he has remodeled soon.

I did not mention it before but we went to "The Angelman Syndrome" walk-a-thon a couple of weeks ago. Website http://www.angelman.org/angel/ . Our really good friends Rick and Suzanne's oldest baby boy has this. It was an awesome event. It was held at Jefferson Barracks State Park and we all enjoyed ourselves. Us five went and then a friend from work, Jenny and her son Jack met us there. The boys and Jack had a blast following the trial and enjoying each other. We met up with a few friends we had not seen in awhile (Trevor and his new wife Kim) and then Ricky's parents. We will definitely be going from now on.


Well today we were going to go to the Zoo but it was rained out. Tomorrow Dani is scheduled for an MRI (under anesthesia) and then Friday we have the IVIG (Immune Boost) infusions and the eye doctor appointment. I will let you know how it goes.


Vibeke is getting ready to start infusions and it is very exciting that she finally got approval. Thanks for all the love and thoughts.


Erin ..... I will try the teddy grahams next but I am really working on veggies right now. I did buy baby goldfish but have not opened them yet. She is still more picky then I am used to. The boys use to just shovel everything in. She is more stubborn than Gabe which amazes me.

She is definitely a smart one and knows what we are talking about and the schedule for the day. She tells me what is next in the morning when getting ready. She will tell me when it is time to brush her teeth and when it is time to clean her ears. She now will not keep socks on her feet.

Please do not forget the Golf Tournament on Saturday June 23rd. It should be a lot of fun and there is always prizes to win.

Day +197

WBC 5.1
Hemoglobins 14
Platelets 382
ANC 3315
Retic 5.3

Well this morning Dani decided to worry us because she had a rash under her chin. This afternoon it is better so we will keep an eye on it. Her numbers are good. We are waiting for her Retic number to see about weaning her steriods so more.

She is now on a sippy cup and is tap dancing. She loves her dancing. I will try to take a video of it. She is still not the happiest about table food. She is starting to eat Honey Nut cheerios.

The boys are out of school and are very happy about it. Grandma Dunn is getting her other hand done on the 6th of June so more happy thoughts her way. PJ (my nephew that was in the accident at the end of last year) is back on a Naval Carrier and outside of Iran. Send positive thoughts his way also to come home safely. He is on the USS Nimitz (sp?).

I hope everyone enjoys their long holiday weekend (US bound anyway) and all have a nice weekend!!!!! Send a special prayer that Vibeke in Norway will be started on Enzyme Replacement Therapy soon. She has been fighting so hard to get it and she is getting some positive comments back now.

http://www.caringbridge.org/europe/vibeke/

Updating:

Yvonne, Dani's nurse practioner, called back and she is going to get IVIG (Immune System Booster) next Friday. It is a four hour infusion so I hope we make our 1:00 appointment with the eye doctor to talk about the lens implant. They lowered her steriods from 3.0 daily to 2.8 ml daily. The rash we will keep an eye on and see if it gets any worse.

Day +190

WBC 6.8
Hemoglobins 12.8
Platelets 289
ANC 5644
Weight 28 lbs 14 ozs
Retic - 5.4

It was a good visit. All the numbers are going in the right direction. We are back to going to clinc every two weeks ... very exciting!!! They lowered her steriod dose. We will go to a local Quest Lab next week just to get numbers. They were talking earlier about starting IVIG (which boost the immune system) but that is not definite and I think the numbers might be good enough this week not to have too.

I hope everyone had a wonderful mother's day. We laid low and relaxed the entire day. We are getting a lot done around the house which is nice and so ready for the boys to be out of school. The next clinic visit is the same day as the prep session for Dani's eye surgery. It will be an interesting day.

Dani was tap dancing in clinic today and it was too cute. She is figuring out a lot around the house. Which means we have stepped up on child safety gadgets. She wants to go outside all the time now and we are still scared. But she has been out and not sure about her bare feet in the grass. Jason bought her a blow up pool so I will take pictures when she (and her brothers) get in.

Mom did well with her surgery and her next one is scheduled for June 6th. Keep the good thoughts rolling!!!

Do not forget about the golf tournament June 23rd. Jason is playing and I will be a beer girl. It should be a lot of fun. Shoot me an email for details rdhdtrue@yahoo.com

Day +183 Last Infusion ... We hope

WBC 13.8
Hemoglobins 11.5
Platelets 352
ANC 12,834
Weight 28 lbs 4 ozs
Retic 9.32

Dani started the day of in a mood. She was not happy with anything on the drive into the hospital. I warned them when we got there and they pushed things along. It could of be worst or better but we were very happy it is hopefully the last infusion forever. Her counts are pretty good. Her ANC is high because her immune systems has been suppressed from these infusions and the calculation they use to get this number is errored (sp?).

She has a clear runny nose that we are hoping does not get any worse. She is kind of back to ground zero with her immune system so we have to continue to be careful with cleanliness and such. We have not really relaxed in that department so no big deal.

She loves her music and her gerber graduate crackers. I have a video I will download her in a bit of her dancing. She will grab the remote for the TV or just stand in front of any TV and start bobbing up and down to dance. She loves watching videos.

http://s5.photobucket.com/albums/y199/rdhdtrue/?action=view&current=DaniDancing.flv

May 15th

This is MPS Awareness Day around the world. NASDAQ will ring the opening bell in acknowledgment of it. I have been trying to get work to do a casual day for it but I think they are tired of us. Here is an independpent movie about MPS II.

http://www.jonathanformica.com/portfolio/courage.php

This is an article on a wonderful group of girls and their Mom and Dad's daily struggle.

http://www.mycommunity.com/town/Teaneck/Details_story/Three_beautiful_girls%2C_one_deadly_disease/view.php?action=Detail&type=story&sub_id=18705&area=&category=1

Please consider being a bone marrow donor. It is free to apply online until May 21st. Go to http://www.marrow.org to find out more information.

Day +180 - 6 Months Post Transplant

WBC 8.6
Hgb 10.7
Platelets 403
ANC 7396
Retic 14.44 (Normal .50 - 1.50)
Weight 28lbs 14 ozs (But it was a new nurse and she let her keep her clothes and diaper on)


Sunday was the big day!!!! Dani is 6 months post transplant. We did go to clinic yesterday (Monday) to make up for missing Friday. As you can see the numbers slipped a little but are still ok. The Retic is showing, because it is high, that she is still chewing up Red Blood Cells. So we want to see that come down. She will get her last infusion this Friday and hopefully her body will balance out. She is now being weaned off of the steriods. She went from 7ml to 4ml in the last week. Hopefully she will lose some weight so she can wear some of her new outfits she just got. She is a buddha baby right now.

I received an email from another Mom of a Hurler's patient (which I need to call ;) ) and her daughter is 10 years post transplant. She has Cardiomyothopy and had this particular Anemia ... amazing how similar they are. She said that she is free of the Anemia now but it took years to wean her off meds. So that kind of puts this in perspective. She also said she is a normal and social 10 year old with no orthopedic issues. I can not wait to talk to her more.

Last but not least to mention is the "Thanks Mom" Marrow Donor Drive through the National Marrow Donor Program is going on now till May 21st. That means that it is free to become a donor right now (even online!!!! ). If you have not done this yet please consider it and I will post the link below. Save a life!!!!

http://www.marrow.org/NEWS/Events/Thanks_Mom/index.html

Day +176

WBC 9.6

Platelets 509

Hemoglobins 12.2

ANC 6144

We did not go to clinic today. I have been sick all week and did not want to spread my germs nor sit with Dani in a small room to chance getting her sick. Dr. Hayashi is not there this week so they talked to Dr. Shenoy and she said we could wait till next Friday for her next infusion. I asked Dani's nurse Carrie to follow up with Dr. Hayashi on Monday to make sure that was ok. We went to Quest this morning for a blood draw to make sure her hemoglobins were ok and as you can tell all her numbers are really good!!!!

She has been doing well. The pictures above were taken by Grandma Dunn when she was watching Dani on Thursday. It was labeled Dani's new trick. This was the first time she climbed up. Her hips do not seem to be holding her back at all. Grandma Dunn gets her surgery next Wednesday so everyone keep her in your thoughts that all goes well!!!

Day +173 - 2nd Opinion

2nd Opinion on her vision

I LOVED this doctor. He knew we were coming for a second opinion. He took a lot of time explaining things and gave us as much information as he had.

To catch everyone up. Dani is VERY near-sighted. She also hates her glasses and patching. I mean she will keep her glasses on for an hour or so because she knows she will be in trouble if she does not but she still hates them. We thought that if the glasses where really helping her she would get use to them. That has not been the issue. She was diagnosised in July of last year -14 in one eye and -17 in the other. That doctor (Dr. Tychsen) was very abrupt and did not seem like a people person (I know when you get to a specialist that might be the case). He wants to do a lens implant at the same time as the muscle correction for her crossed eye. When I googled that or talked to our insurance I could not find out much information. So I wanted a second opinion to make sure the direction he wanted to go was the right one.

Dr. Goodrich actually said he has referred some patients to Dr. Tychsen. Dr. Tychsen and another doctor (hospital) in Texas are the only ones doing lens implants. So he did not have a lot of information on the lens implant on children himself. He did try to figure out her refraction while we were in the clinic and he came close enough to Dr. Tychsen's that he had no issues with it. He said a few items he would not be able to determine unless he put Dani under like Dr. Tychsen did.

He also told us that this is a step above an experimental procedure. He said maybe 10-100 children nationwide have had this done. He said if we asked the clinic we can get the info of success rate and complications. He was not sure insurance would cover it. But he said it was appropriate for Dr. Tychsen to want to do this.

He mentioned another procedure which would be put a corrective lens on top of her pupil and get her to an almost zero for now. The downfall on that is cataracts getting worse (she already has corneal clouding) and glaucoma. But that would be later on down the line. Also her vision could continue to get worse so she would still need glasses later on down the road.

It just seems like Jason and I have to keep making these HUGE decisions and it will impact her life to a huge degree. I am selfish enough to want things to get easier at some point. It just does not seem to be in the cards right now. We will talk to the main nurse the first friday in June and make a decision then.

Day +172

Hi All,

I had a few people have been questioning the patch on Dani's eye. Sorry I should of commented on it when I put them up. Dani has Strabismus (one eye crossed) and they have been wanting me to patch her good eye to see if the muscles would strengthen on their own. I did not do it too much during transplant because she was going through enough and she hated it being on. We started again the last couple of weeks and she seems to tolerate it better.

She goes to the eye doctor for her second opinion tomorrow on the lens implant surgery. I am hoping she will cooperate with the exam so they can get an accurate reading. Wish us luck!!!

Day +169 Sixth time is the charm

WBC 16.3

Hgb 10.6

Platelets 306

ANC 15,332

Weight and Height were not taken this time. Ummmm we were there at 8:45 and did not get started with the infusion until 1:30. The nurses in the clinic tried both arms and blew them. Then an hour or so later a outpatient lab tech came in and tried her feet (never again). She screamed blood murder and the lab tech stuck her three times on her feet. She was sooo upset she had the blown veins swollen and they looked scary. So then 2 hours later the paramedic crew came in and choose her hand to try. They took a few moving the needle around and Dani did not like that but got a return so we where all relieved.

They started the hydrocortison and then the flush. When they slow the flush it started beeping. We looked at her hand and it was soaked with fluid (blood and clear). So they opened up the bandages and looked. They flushed it and all and it seemed to be fine. They then regave her the hydrocortisone and it seem to work fine. So we completed the infusion and it was 3:15 when we got out of there. That is amazing because this is a two hour infusion.
Anyway we are a little concerned over her high WBC and hope that settles again. Overall Dani was in pretty good spirits and doing fine right now.

Day +167

WBC 7.8
Hemoglobins 10.9
Platlets 286
ANC 5694

The numbers are good!!!! Nothing really more to report. We will be going to clinic on Friday for her 2nd infusion.

Day +166 Rituximab Infusion

WBC 7.4
Hemoglobins 11
Weight 26 lbs 6 ozs
Height 32 3/4 inches

I forgot her paperwork at home so I do not have all her numbers. But they all looked good. We started Rituximab yesterday. We got there at 8:30 and the infusion did not start until 11:00. She had tylenol, benadryl (both oral), and then hydracortison through her IV prior to the infusion. They hooked her up to a heart monitor (3 leads), a post ox on her toe, and then her IV in her arm. So there was no putting her down to walk. They also did not have a room so we where back in the infusion center. By 11:00 Dani is very done with the whole situation especially after she realizes she can not get done and be free. So she screamed for a half hour or so until she passed out from exhaustion. Not a fun moment in time. She slept for an hour and a half which was almost the whole infusion time which was nice. I laid on a recliner and she laid on top of me.

They originally said it would take 5 hours but only took half that amount which was nice. Next time it actually should be quicker than that. She had no reaction and was very stable through it all. I will take her into Quest by the house Wednesday morning for a finger prick to make sure her hemoglobins are staying up. Hopefully we will not have to go back until next week.

I feel like I am forgetting to include something so I might be back later.... I hope you all have a nice week.

Update*

I did find out they are only planning on giving Dani 4 infusions. I also asked them to change clinic days from Monday's to Friday's. Primarily because my mom (who watches Dani three days a week) is getting Carpal Tunnel Surgery on May 4th. Grandma Boni is available to watch her on Monday's and my niece Trish watches her on Tuesday and will help me with a couple of Wednesdays so I am trying to be able to get in as many hours as I can. I think my sister Vicki is going to work with Mom to help her take care of Dani too somewhat. Are you keeping up? Dani can not go to daycare until she is 2 years post transplant so that is not an option. Fun as always!!!