Day +151 Inpatient

WBC 7.5

Platelets - 291
Hemoglobins - 5.7 (VERY LOW)

ANC - 4875
Weight 25 lbs 7 ozs
Height 32 inches

We got to hospital as usual this morning and had labs drawn then headed up to the HemOnc Clinic. The first doctor we saw was a Med Student. He was asking the usual questions which I said all is well and then he simply said I see she is jaundice. And I said "She is?" She does not look any different to me. Later on Dr. Wilson said that because we see her everyday and are use to her coloring we did not notice it but she did look a slight bit jaundice. Well after the med student left another doctor came in and asked how she was acting and checked out her vitals and said her Hemoglobins (Red Blood Cells) where very low. So they drew more blood and decided to do a blood transfusion.

This ended up being a very long day. They ended up (since her central line is out) having to stick her twice to get an IV in. Then we waited. They were looking for either signs of Graph Vs Host disease, her anti-rejection medicine attacking her red blood cells, or autoimmune hemolytic anemia. All her other numbers looked good except a slight raise in billirubins (sp?) which can be caused just by the destruction of the red blood cells.

Finally around 1:00pm they came in and told me she had the anemia. They said this is very treatable but that they needed to get on it quickly. So since they already had the IV in they decided that inpatient was the best route to go.

So we got to go home and grab some stuff and headed back up here around 3:00. It is 6:15 now and they just started her on steriods (Methylprednisol) and will take it every six hours. They are having to specially screen the blood to find some that she can not break down as easily. They said we might not have any until tomorrow. The doctors where just in and said this probably going to be an issue for awhile. They will try weaning her off steriods but they said alot of times as soon as they start that her body will start attacking the red blood cells again. So this will be another day by day adventure.

Gabe and Ethan are with their dad for the next two days at least depending on when we are released. Say a prayer and we hopefully will be back home Wednesday.

Day +145

Sorry about the long wait for the results on the hearing test. We had an interesting weekend. Dani is definitely not a happy camper with the animals that are in the boxes during the test. So they actually used her crying as a measurement on what she could hear because she would not look in that direction. Fun huh? Anyway they said she is still show very mild high pitch hearing loss but nothing severe enough to effect speech or development. They also said there could be fluid in the inner ear that the naked eye can not see. So she needs to go back in six months to recheck.

The orthopedic office also left a voicemail and the surgeon said she did not have to go back for a year. So maybe we can space out some appointments.

In other news .... Missy Miss is showing temper. I think she might be teething and she definitely is spoiled. She lets you know as soon as you do something she does not like ... for instance if you do not give her all of your attention. She also looks like she is going to have curly hair so we are gonna keep our fingers crossed on that. She goes to clinic next Monday so I will update then with results.

She loves her books and especially the kitten and bears in them. She is saying a lot more words. She also is now helping more with task. She will try to put her seatbelt on in the car and if you say bath she will start trying to take her clothes off. She is getting so big!!!

Another Angel

Another MPS Angel found her wings....

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


Please say a prayer for her family

Day +138 Ortho Visit

There are Missy Misses X-Rays from today. Her spine looks great!!!! We are so happy about that. They confirmed her Hip Dsyplasia. They are really only going to keep an eye on her until she seems to be having issues with it. It is not slowing her down currently. She will go back for a evaluation in August and then monthly visits after that. The eval will be with the surgeon, OT, and PT.

I will let you know on Friday how the hearing test goes.

Day +137 Clinic Day

WBC - 3.6
Hemo - 9.7
Platelets - 251
ANC - 1767
Weight 24 lbs 6 ozs
Length 32 inches

Hi All,

Well I was not happy to see her numbers down but they said they will flucuate as any normal persons does but I want them to go up up up within reason. She is 100% engrafted with her donor's cell still ... yippee!!!! She is doing well overall and keeping us busy chasing her. She has an orthopedic appt tomorrow and hearing test on Friday so I will update with those through the week.

Our weekend was beautiful and it was nice to be able to get outside with the boys. They have new bikes and Miss Dani received a little Barbie power wheel ATV. She is not sure of that yet. I will take pictures and post them ... I promise.

The Circle of Life

Introducing my newest great nephew Grayson Alexander Dunn. 7lbs 1 oz

Another Angel

Nick passed away this morning ... say a prayer for the family.

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

Day +130

I was going to say all is quiet but ummmmmm all the children are vocal enough that it would not be true ... hahaha. The boys are on spring break this week. Gabe is spending it with Grandma Bullock and we took him yesterday to a half way point between us and them. Dani was really done with the car by the time we got home. It was a three hour round trip.

Ethan is with his Dad this week but will come to our house today and tomorrow to be watched with Dani. So I got to see him this morning and he is all excited about going fishing with his Dad later in the week.

Dani's steri strips came off yesterday so she got to take her first regular bath today. She was kicking and splashing and having a grand ole time. She is still really clinging with Jason and I .. more so Jason (She's a daddy's girl). She saw her pediatrician on Saturday and Dr. Kruesser said her ears look wonderful. So we will go ahead with her hearing test on the 30th. She will have clinic on the 26th and I rescheduled her Ortho visit for the 27th.

Aunt Janet and Uncle Darren are putting together a Golf Tournament. They have it every year but this year the proceeds will go to Dani!!! I will attach the poster and the deadline for registration is April 15th. We attended the after party last year and it was wonderful. I hope some of you can make it.

Day +119

WBC 4.7
Hemoglobin 9.7
Platelets 303
ANC 2773
Weight 24 lbs 7ozs
Height 32"

Dani did wonderful again with her procedure. You can now tickle her belly with no obsticles. Clinic went well. She is scheduled to see the Orthopedic Surgeon next Thursday (3/15). Her hearing test is scheduled for March 30th. She does not go back to clinic until March 26th.

Dad is home and doing pretty well. Mom is trying to figure out how to be a good nurse. She will have lots of practice. The boys are doing pretty well ... definitely pushing the boundaries to see what they can get away with. I can not wait for warm weather.

Day +118

Just a quick picture to share of Dani wearing her pink MPS Society shirt that Kris gave her at the Bowl. I love this picture. She looks sooo big. Her central line comes out tomorrow .... we are soooo excited. I will update more tomorrow.

Say A Prayer

Nick was one of Dani's roommates when she received her transplant and did not get to take his Make-A-Wish trip. Send thoughts and prayers to his family. He has been given a month.

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

Day +116

Dani is doing well. She is really walking around now. She is also getting really good at stacking and put shapes in correct holes. She says Mama, Dada, Play, Butt, BaBa and tries Night Night. She is waving Hi and Bye and does both arms over her head for "so big" and one arm over her head for "all gone or done".

I am sick currently as is all of my babysitters so this should be an interesting week. My Dad is in the hospital and has been since last Wednesday with Kidney Failure. He is doing a lot better now and would be discharged but he is still weak and having trouble walking. They will try to rehab him at the hospital and if not he will go to a rehab center for a bit.

Jason took Dani for her appointments today (Clinic and Hearing) He does not have the routine down so he took her to outpatient for the lab work but forgot to go see the doctor afterwards so I do not know her weight and stuff. He said she was not cooperative during the hearing test so they might have to be redone. The results they have are she has mild hearing loss and possibly some fluid in behind her ear. As I find out more I will let you all know.

She is scheduled to get her Central Line out Thursday and I will post more then. I also have some new pictures if my camera cooperates this evening. It did not last night. With everyone sick around her please send positive vibes her way for her to stay healthy!!!! I can not wait till we are done with flu and cold season. I hope you all have a good week.

Day +108

We had a wonderful time today at the Klenke Bowl, in honor of Kraig, and for the MPS Society. Dani did not attend but Jason, Gabe, Ethan, and I did. I hope more of you will be able to attend next year. We saw a few different MPS families and it was wonderful to see them. I won a wonderful basket of MPS logoed items. Dani is modeling one of the hats in the pictures. Gabe won a volcano lamp and Jason won some Bandana's BBQ sauces and spatula.

I will post more pictures of the bowl when I see them. I, of course, forgot our camera. Dani went to her first family function yesterday. My nephew P.J. (who I wrote about in November) is in town for his sister Erin's wedding. Dani did well and everyone was happy to see her but of course today she has a runny (clear) nose and a little bit of a fever. This could be due to her trying to break a molar through but it has put us on edge. I am hoping we did not push to soon. She has no appointments this week. The boys go to the dentist on Tuesday and then Jason is out of town Tuesday to Wednesday. I am hoping for a normal ... no appointment week soon. Dani goes back to the clinic on the 5th and gets her Central Line out the 9th. I will update again as things occur. Hope you all have a wonderful and uneventful week.

Day +102

WBC 3.6
Hemoglobins 10.2
Platelets 263
ANC 1656
Weight 24 lbs 15 ozs
Height 32"

Hi All,

All is well here. I am back at work and Dani is with Grandma. It will take me a little while to get in the swing of things. My nephew PJ is coming home this weekend and I can not wait to see him!!! Also we are going to Klenke Bowl on Sunday for MPS honoring Kraig. Should be a fun weekend. We do not have another appt for Dani until the 5th of March. I will update before then.

Day +99

Tomorrow is the big day!!!! I can not believe how quickly this has gone. Dani had her Bone Marrow Biopsy this morning and all went well. We will not know results on it for a couple of weeks. I am starting back to work on Monday. It will be nice to get back to a normal routine.

She has clinic Monday morning and when I know results I will update. I hope you all have a good weekend.

Day +96

The boys school was cancelled and ice started before snow so I cancelled her surgery today. I am not sure when it will be rescheduled. Her hearing test will be on March 5th.

She is taking a lot more steps today .... probably because I am pushing her a little more since no infusions.

Day +95

WBC 3.6
Hemoglobin 10.8
Platelets 319
ANC 1440
Weight 24 lbs 15 ozs
Height 31 1/2"

As usual these days I do not have any numbers yet and will update again when I do. Dani no longer has to do ANY infusions!!!! Yippeeee!!!!!! She is on all orals meds now. She will only be doing two test for her 100 days. She will be put under tomorrow to do another Bone Marrow Biopsy and then some point this week she will have a hearing test. They will be doing an MRI and X-Rays at 6 months out. I cancelled her eye exam because I am getting a second opinion May 1st and she will go back to Dr. Tyson June 1st so there is no point in doing one right now.

She will have clinic again next Monday and then start going every other Monday. She will have her central line taken out 2 visits from today. That is sooo exciting also. I asked about doing an eat study on Dani and Dr. Wilson said he would check into it. I would really like to get her eating table food at some point and then switch over to whole milk.

She only has to wear a mask going to the hospital and doctor's offices now. Although we are still not taking her out in public places but we do not have to worry as much as we did. I am trying to think of what else I asked today. She is currently taking 7 medicines (four of those being her heart meds). We will hopefully be weaning those down as the days progress.

I should start back to work next Monday and am ready to go. It will be nice to have two paychecks again. I know Grandma Dunn can not wait to get her hands on Dani. She has not been able to spend as much time as she was use to with her. I can not thank my bosses and friends at work enough for being so wonderful during this entire situation. I could not have asked for a better work environment and so much understanding. Everyone has been so supportive through this and it has helped tremendously.

We are thinking about having a party in the summer so Dani can meet all her family and friends. I will let you all know when I have more details about it.

Please keep Nick and his family in your prayers and hug your love ones.

Send some love

One of Dani's roommates during her transplant received some awful news. His transplant did not take. Please send some love his way!!! He is only 4 1/2 years old and so full of energy.

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

Day +88

WBC 3.4
Hemoglobin 11.4
Platelets 318
ANC 1836
Weight 24 lbs 8ozs


Well today went ok. I do not have numbers yet and will edit this when I get them. They were very busy so it took awhile to get in and then we were in a regular room and not an isolation room. I talked to them about when we would be able to take out her central line and they said a month. They also said we would be starting oral cyclosporine next week ... which will be wonderful!!!

The only test date I got back was Feb 13th at 12:30 they will be doing another Bone Marrow Biopsy. I asked about another MRI and they said one was not requested but that occurred with the original testing before her transplant and when I questioned them they had not realized she should get one so I left a voicemail about it today. I would like them to do it at the same time as her Biopsy so she only has to be put under once.

She took quite a few steps yesterday so it will not be long until she is on the loose. I am in no hurry ... lol. I hope you all have a good week and I will post more when I know more.

Day +85 Cardiology Appt

Well there was good news and new news. At the last Echo in October Dani's shortening fraction was 26% last time and this time was 29%. Her ejection fraction was 52% and now is 53%. Both of these numbers are in the normal range (YEAH!!!). Dr. Goel left the medicine all the same but said he will review her chart more closely later on today and would let us know if he changed his mind. He also is talking about her weaning completely off which was exciting to here. I can not imagine not having to give her any meds ... that would be wonderful.

She still has the PDA (hole in her heart) so he wants to close that this summer. He said its a pretty minor procedure but would require an overnight stay. He said we could possibly do the eye surgery at the same time so she will not need to be put under twice this summer. I am going to get a second opinion on her eyes in May and her appt with the original eye doctor is the first Friday in June. So I will know more then. He wants to wait until summer because she will obviously be further along in her transplant and the less likely she can catch a cold or flu then.

He wants the central line out as soon as possible because of the risk of infection especially with the hole in her heart. So I will talk to Dr. Hayashi and Yvonne Monday to see when that will be.

Ok so the new news is she has fluid around her heart. (Hi Kallie) He said that the GVHD (Graph Vs Host Disease) could be causing it and it might go away on its own. The problem is that we have NOT had an echo since October so we do not know if it has been there or just appeared or is getting better or worse. So she will go back next week for a quick check on it to see if it is getting worse, better, or staying the same. He is not concerned with it if it stays the same but we will keep an eye on it. It seems it is always something.

Dani is teething and has been pretty fussy this week in general. I had her in a pretty good routine last week and that went by the wayside after the weekend. She is not sleeping as good as she had been but after tylenol and numbing medicine she is not as cranky.

She has lots of hair on her back and shoulders. She also has pretty good side burns, mustache, and hair on her forehead.

One day at a time is all we can ask for. Her 100 day testing will be coming up the 2nd week in February I believe. I have not gotten a schedule yet but when I do I will post it.