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!!!

Day +161 Transfusion

WBC 12.4

Hemoglobin 7.6

Platelets 343

ANC 8928

Weight 26 lbs 9 ozs

Did not get a Bilirubin count

It was a long day but things went fine on Dani's end. Just in case there are newbies, if you are at the hospital and the say 15 minutes it really means an hour to an hour and a half. She was lower on her red blood cell count so received a transfusion. She will start the medicated infusions on Monday.

Miss Dani has started a new trend of rolling her R's when mad. With steriod she seems to be mad quite a bit. So when she is learning spanish in high school she should have a step ahead of everyone.

We arrived at the hospital around 8:30 and left at 2:30. Dani actually cut it short by pulling out the IV line from the blood warmer. Luckily we only had probably ten more minutes to go on the flush so she received everything she needed. With the warmer on there we are not given a very big leash so she actually tripped on the wheels of the IV pole and when she went down it pulled it out of the warmer. I guess they were not thinking of little ones when they invented that.

She is totally in love with the Gerber Graduate Veggie Crackers. I think we went through half a box just today. She did not sleep much so she wore both of us out. They actually did not pre-med her before the transfusion nor did they start low and ramp her up on her infusion rate. She did really good with neither being done.

It is still unclear where our journey will lead us and so far none (knocking on wood) of this is effecting Dani besides the steriods. They did say they will wean her off the steriods while doing this medicated infusion so hopefully all will work and we will be moving forward. Please keep her in your thoughts and prayers.

Day +158

WBC 10.0
Hemoglobins 8
Platelets 352
ANC 7500
Bilirubin - 2.1 (Normal .1 - .3)
Weight 26 lbs 1 ounce
Height 32 1/2

Ok ... Another interesting day. So as you can tell her Hemoglobins are going back down. The steriods are obvioulsy not helping. They took blood to start screening for a blood transfusion on Thursday. They will look at her counts then and decide the next course of action. Dr. Hayashi is talking about starting her on a drug called Rituximab. This would be a weekly infusion. It will help destroy the B Cells. The B Cells are what are attacking her red blood cells.

I put the Bilirubin count up there because it is high and we need to keep an eye on it. They said when Red Blood cells are broken down it lets out Bilirubins. We were concerned about her liver function because normally high bilirubin means her liver function is not good but they said that they can also monitor liver function by the AST and ALT level. I am not sure what they stand for but they are both fine.

She is still acting fine but of course we are on edge with all of this. She was a trooper when they were trying to stick her for blood today. She got poked three times. Her arms have track marks on them. Right now they are not considering putting the central line back in, but if her viens get too chewed up that might have to be considered.

Day +157

All is well but I do believe the steriods are starting to show. Missy Miss has been really cranky today. I will take that as opposed to the alternative. We are hoping for good news tomorrow at Clinic.

The pictures are from at least a week ago with Dani enjoying her brothers and her bath. The middle one is Jason and I going to a 70's party. It was a lot of fun dressing up.

Day +156

WBC 10.4
Hemo 9.4
Platelets 3920


Well I took Dani for a blood draw this morning. They said we would not have results until later this afternoon. I talked to her Cardiologist yesterday to see what he was thinking. He was not aware of her hospital stay so I filled him in. He said we would wait to see what her labs show on Monday and go from there. He said the bright side of this whole thing is with her hemoglobins down so low that if her Cardiomyothopy was bad she would of went into heart failure. Since she was non symptomatic that show her heart is pretty strong. So a bright side to the last week.


Very good results!!! We are relieved that the steriods seem to be helping. I will update after clinic on Monday. I hope you all have a nice weekend!!!

Day +154

Dani slept over 12 hours from last night to this morning. She has been in a pretty good mood. I was astounded by the amount of steriod she is to receive everyday. I believe she is already getting her football shoulders. They also put her back on her anti-fungal which I am not sure why. I will ask on Monday. Above are some pictures from our hospital stay. You can see her IV arm on the first two days and she is lounging and watching Baby Einsten with Dad the last day while she was getting her second blood infusion.

I can not find my Kodak Camera's cable to download those so all I have is my cell phone pics. Hopefully the cable shows up soon. I have some cute bath time pictures.

We Are Home

WBC - 15.1
Hemoglobin - 9.3
Platelets - 338
ANC - 1102

We just got home an hour ago (6:30ish). They gave Dani the 2nd half of the blood and waited an hour and took her blood and let us go. We did not have the best experience today and I will not go into details but we are sooooooooooo happy to be home!!!!

We never did get to talk to a doctor today but the rumor was we would have Home Health Care come out Saturday to take blood for a count but that was not on the discharge papers so I am not sure. I know we have an appointment at clinic on Monday.

Dani is doing well. She is really tired as am I and we are hoping she will catch up on her sleep tonight. With her being back on steriods we assume her attitude will show and she will get her football shoulders back but whatever it takes to get her better.

I took some cute pictures with the cell phone at the hospital but do not have enough energy to download them right now. I will tomorrow. Thank you all for the thoughts and prayers and hopefully we are on an upswing.

Day +153 The Long Night

WBC 14.0
Hgb 8.3
Platelets 344
ANC 1134


First off everything is fine and Dani did really well last night.

They finally got the blood upstairs around 10:30 last night. They had to have a blood warmer on the IV pole because they had to keep the blood at Dani's internal temp. They hooked her up and ran it very slow for the first hour and took vitals all the time. Her blood pressure was showing slightly low but stable and no other appearance of a problem. After the hour they started cranking up the rate and Dani was sleeping so I snoozed for an hour or so. Dani woke up around 12:30 and then the IV started beeping that there was an occlusion. The two night nurses worked with her IV for a bit but we were running out of time because all the blood had to be given by 2:00 or it would have to be thrown away. They concluded that the IV originally given was so tiny it clotted with the blood.

They called in a Paramedic team to run a new IV in her other arm ... more fun!!!! Dani did really well and they had it in pretty quickly. Fortunately they could put in a larger tube and now we can get blood drawn out of it as well so no more poking. They finished a little bit after 1:00 and then we got the rest of her blood in by 2:10 am. I had to hold her for that hour because the lead from the warmer was not long enough for her to be very active. We finished the blood and then gave her her steriod and we were asleep around 2:45 to be waken a little after 4:00 am to get a new blood draw for counts. After that we slept until around 7:20am. When I asked about counts they said the labs had to be done a special way so they needed to redraw blood to get an accurate read. The last I heard (not officially) was her hemoglobins were at 8.3 (better).

The docs have not made rounds yet but the word on the street is they will give her the second half of the blood and she will be discharged today. Fingers Crossed!!!! I will update when I get more official word. Thanks for all the prayers!!!

Day +152

We have not gotten a full report yet from blood work but Hemoglobins are up to 6.0 ... normal is 10.5 to 13.5. She has gotten 3 doses of steriods so far. They still have not gotten any blood to give her. They are hoping they will get it this morning. She slept fairly well considering better than Jason and I. Her blood pressure is a little low ... bottom number 30 or 33 depending but that is also them taking it with the automatic machine that does not like Dani. I have not heard that they are concerned about that yet.

I will update again when I know more.

3:07 pm ... We are still waiting for blood. We found out she has both cold and warm antibodies. With this anemia it is normally one or the other. They had to take a fresh sample of blood and measure the temperature of it to get the transfusion to match. We will hopefully be getting things going soon.


5:37 pm ... Frustration setting in. Well a half hour ago they had two samples they matched (although not perfect ones) and they were going to let Dr. Wilson decided which one to try. He did not like how "reactive" they were and decided to confer with Dr. Hayashi and run another set of counts and decide if they would just let her bounce back on her own. Of course this means she got stuck again. Her poor arms looks like target practice. Although she is being a trooper and did not cry at all with this last one. So we are still waiting ....

7:43 pm ...

Hemoglobins 5.2
WBC 11.6
ANC 1730

Ok well something is not right but we are not clear on what it is. We just got the lab results back but have not talked to the doctors again. I will let you know when I find out. Obviously her Hemoglobins are even lower than yesterday and her WBC are much higher. Maybe this will end up being viral ... not sure.

9:46 pm ...

At some point we are going to do a blood transfusion but I am not sure when. We are apprehensize about reactions and such but they said if anything goes wrong we will head straight to ICU.

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