Update

Madison is doing well according to Mom. The end of the month has the normal 3 month interval testing. This time they may opt to do an ultrasound of the torso vs a CT Scan. This is 9 months since transplant. What a success story that little girl is !

Scans

Madsie's scans ( cancer ) from 2wks back are clear. Unfortunately she missed camp due to a stomach virus and had to be hospitalized.

Cancelled

The nursing staff couldn't hit a vein this morning. Hit and miss is Madsie's least favorite activity. The event was called off and is being rescheduled for a later date.

Scans

Tomorrow goes from 8 to 8 and is filled with the anxiety filled battery of scans. These tests are performed to determine if there is any Cancer growth in the new Kidney. I'm saying my prayers and know that God is looking down on Madsie and will give us a positive outcome.

Clear

Madison's tests came back, she is in the clear !

biopsy

Monday Madsie is going in for a full day to complete the 4.5 month test. Normally this would have occured at 6 months but because of the early rejection last time they have accelerated the testing. Praying for good results.

Admission

Madison was admitted last Fri/Sat. The results of her Friday labs warranted an overnight stay at Chez LPCH. She was out in time to celebrate Easter.

On a sillier note, I didn't remember, but Madison is a Cooking show addict. A famous ( don't recall who ) Cook/Author is going to be at the Stanford Mall signing books later in the week. Madison is lobbying for a meeting with her favorite TV Cooking celebrity. What a hoot that girl is.

Frustration

This past week was especially difficult for the family. Madsie was required to have a blood draw each day. These are especially difficult because, after 8 yrs on dialysis veins are hard to find. Madsie says she can feel her veins rubbing against her bones in her arms. In an act of kindness the Doctors let Friday's blood draw be optional. Madison said she would rather be dead than have to have these blood draws. I guess even with good veins, nobody likes blood draws. My heart breaks for Madison.

Thank you LPCH

Apparently LPCH is on the cutting edge of organ transplants. The needle biopsy procedure is not done at the same frequency or as early at other institutions. Having caught the rejection early enough on they were able to put Madsie on stronger drugs that have in likihood reversed the early rejection. Madsie is back at home. On the downside she is very upset. The admission to the hospital this week was too painful a reminder how she has spent much of her childhood. LPCH stands for Lucille Packard Children's Hospital.

March 18th

Lisa says Madison is doing very well.

• Health wise Madsie is great
• They just had her room redecorated; new paint and a new bed.
• Madison is going to have a needle biopsy of her new kidney. The procedure will be an all day event
  
• This will be the post transplant baseline biopsy.
  
• Biopsies will be performed again at the 6 month, 1st year and then at the 2 yr milestones. The transplant occurred December, 19th.
  
• Mind boggling Medical terminology but worth skimming ( click her for Medical terminology ) to get an idea what information they are looking for from the results of the test.
  

Yesterday's pictures

Madison and her kitty, Riley !

Yesterdays pictures

Madsie opening some way past due Christmas presents....
  

School

Madison was realeased from home isolation last Tuesday and returned to school. We saw her yesterday afternoon and she looks so healthy. Her cheeks are full and her color was so good. I was surprised to find out that when they do the transplant that they put the kidney on the front of the body. Lisa said this was so if they had to go back in for any reason that they would have easy access. Her incision/scar is quite a shark bite.

Cancelling COTA donations

I found that I was able to cancel my donation to COTA for Madsie after contacting Judy

Judy Sutton
Administrative Assistant
judy@cota.org
800.366.2682x200
Children's Organ Transplant Association

I'm setting up an automated payment via my Bank targeted at the Smile Fund.

Donations

The new direction is to donate via the Smile fund setup in Madison's name. Issues around the relationship with COTA and personal desire of the family have led to the choice of a different vehicle for raising money for Madison. I have an email off to COTA to find out how to cancel an automated payment being made in Madson's name. I should have instructions by tomorrow evening. At the new site please disregard the link for COTA and look for the information regarding the Smile fund.

DONATE HERE

Awesome..

Madsion is doing so well in her recovery, that the Doctors are saying that she can forego the 100 days in isolation. It now looks like she will be able to return to school in the next week or so. You can imagine how exciting that is to her. Back with her friends at last.

Update

All the trips to the Hospital are taking it out of the family. Madison is otherwise doing fine. She is gaining weight. Madison says food tastes good for the first time. All those toxins in the body must have affected her taste.

Go Girlscout/Brownies

Not sure if it was Girlsccouts or Brownies. We do know that our favorite niece, Mellisa, and her troup raised $750 for Madison. Girl Power !!!

Saturday Update

The Kitz family is so busy with the new Kidney that I hate to call and bother them. When I get a call it's a slice of heaven.

I'll never comprehend how Lisa and Madison can be at clinic by 7AM, 7 days a week; yet somehow they do it. Lisa says Madison's left arm is all black and blue from all the labs. Since removing her dialysis lines and the port, surgeons have installed a temporary fistula in Madsie's right arm. This is in case there is a complication and they need to perform dalysis. The write up on the fistula is beyond the scope of the blog. If you are interested look here Fistula

I'm hoping to have more information tomorrow if I can visit. Right now I'm healthy and on the approved list of visitors and hope to be able to drop by.

Super News

Madison is humming along like the champ we all know she is. No issues with the kidney. As a side effect of all that is going on, her platelet levels are better than normal. Normally she would have needed a transfusion, but won't right now. She looks really good. One issue is that with all that water she is drinking she is peeing constantly. What I didn't realize is that because her bladder was essentially unused for all those years, it shrank. Now that her body is processing toxins normally via the kidney they are finding that the bladder doesn't take long to fill up. Talk about worse than a prostate issue. I imagine this will resolve itself over time and the size of the bladder will return to a more normal size. She also says she sees better, and that she can taste food and that the bad taste in her mouth is gone. Most importantly , she believes that she thinks more clearly. What gifts to be bestowed on such a wonderful young lady.


The donor information is unknown largely to the recipient and family. What I did find out is that the first go round with the transplant the donor kidney was rejected because it was only a partial kidney. No indications what that meant. The only information known now about the final donor transplant is that it was from a 23yr old young man. I'm not totally certain, but I believe after a year the two families can opt to meet. That must be incredible for the donor family to see the result of the organ donations as a result of their loss of their loved one. Especially for a child as precocious and special as Madison.


The family is still in need of donations and could use any help possible. See the COTA link above right if so inclined to donate.


On a more touching and personal note. Madison has always commented on how she feels the presence of my daughter Paige after her death. Madison was so in tune, she asked for new clothes on the 1 yr anniversary of Paiges death, she wanted to wear all black on that day. I guess you take it for granted that children also mourn. Madison says since the transplant she feel Paigee beside her all the time now. I'm so happy to know now why I don't feel her presence, she is with her dearest friend; Madison.

No news is good news

The Kitz's have been off the wire since they got home. Their voicemail greeting indicates that they are doing well. Also, we have news from an anoymous LPCH employee, that based on Hospital gossip things are great. No issues with the kidney and Madsie is doing just fine !

News

I just got off the phone with Lisa. Madison got out of Peds ICU on Christmas eve.


It looks like Madison is going home tomorrow.


Starting yesterday Madison will have to drink 4 liters of water per day. Up until that she was getting the fluid through her IV. Lisa mentioned that LPCH's procedure post transplant is to keep the new kidney adequately "profused". Even better according to Madison is that within the next week or two they will surgically remove her dialysis lines and her port. Madison says she will no longer be a freak. The plan is to leave the feeding tube ( mickey button )coming from her stomach to a little button next to her navel in. The mickey button will be good for medication and perhaps pushing some of that enormous amount of water down while Madsie is asleep.

Holiday Greetings from Madison

This cute picture was of Madsie at Halloween, she was a soldier !

Quick Recovery

Besides recovering much faster than expected, the only news is that Madsie may be coming home in the next couple of days !

In the paper again.

San Mateo Paper
Don't forget about COTA ( www.cota.org ) donations if you feel inclined ( COTA ) or see link in top right.

Coming to a TV near you

The word is...the Today Show wants to do a segment on Madison. She has already been on the show, but much earlier in her life when she was initially being treated for Cancer.

More info

Charlie is a bundle of nerves. Tonight will be the first time he has stayed overnight at LPCH. What with Madison being in ICU and the transplant, that will make it just that much more stressful. He has commandeered one of the alcoves in the hospital there on the 2nd floor next to the ICU that is set aside for visitor seating. It's not an uncommon thing to see the alcoves taken over by people sleeping, and yes all their possession close at hand. In the 32 months that Paige was under treatment it was a well established rule that alcoves were for families of ICU patients. The ICU is next to the Oncology Ward.

Madison is dong well. Her urine output is stable. Her fluid intake is regulated and is dependant on an IV going into her port. Madsie doesn't have a Central Venus line like Paige did. The port is one of the other options and only is a single line. In all actuality she probably has another IV for all the medications, fluids, etc....... Charlie mentioned that during the day that blood output increased and caused concern. He is becoming very adept at reading the faces and body language of the ICU Nurses and Doctors.

The plan is that within the next 2 to 7 days that Madsie will become stable enough to be transferred to 3 West at LPCH. Another factoid. If you categorized kidneys like clothing, Madsie's new kidney would be an Extra Large. The Nephrologist asked Charlie if he would like to feel by pressing down on Madsie's stomach. As you can imagine he turned that opportunity down. This is just so real !

The family has found a Hotel close by so that they can take shifts sleeping outside the Hospital. The ICU rooms do not have day beds for parents. The parent staying with the child overnight sleeps in the alcoves I mentioned above. Leaving your child alone isn't an option for some families.

It's Amazing

Although she is catheterized, Madison is peeing. Unimaginable ! So far everthing is going well. The as yet untold story is that the donor family was unable to decide whether to donate the organs of their son. This decision took 2 days. Because of the possiblity that the donation would happen, Madison was staged and ready at LPCH for those 2 days.

One family's grief is anothers joy.

Without all the ups and downs

This time we didn't get a warning until Madison was actually on her way into surgery.  The good news though is that at 10:30PM tonight she was operated on for a new Kidney.  No details right now.  The family wanted to keep it close to the vest this time.

Sad News

When the kidney arrived at the Hospital tonight the transplant team found something at issue with the organ.  They have postponed the transplant pending finding another suitable match.

Exciting !

So the story goes..   Charlie and Lisa were on the way to pick Madison up at school.  Ok, ok.... 

The call did actually come in while Madsie was at School.  Charlie and Lisa rushed like chicken's with their heads cut off to the school to pick Madison up.  When they got there school had just got out.  And just like you'd expect, they couldn't find Madison anywhere.  Finally the school had to announce over the PA system, "will Madison Kitz please come to the office."  To say Madison was excited was an understatment.  The entire trip to Stanford she kept saying faster, faster.

Now they are at Stanford and going through the normal  Admission routine.  

To make a long story shorter: (Bullet Chart ala Vince Gallagher)
1) She has been started on antirejection drugs in preparation for the surgery.
2) She has also been placed on some type of Steroid.
3) when I talked to the family around 7:15 she was in bed haveing her blood drawn
4) having to have your blood drawn at 8 isn't a happy thing.
5) initially the surgery was scheduled for 8:30PM, then it was bumped to 9:30PM.  As of now the
plan is to begin the transplant procedure at 12.

On the downside, Madison's Grandmother got a speeding ticket for driving 80 in a 65 as she rushed to Stanford, and no, the Officer didn't let her off with a warning.

Answered Prayer

It finally happened. Madison was yanked out of school today and rushed to Stanford. A donor organ that was a perfect tissue match was found today. I'm not clear yet about all the details. I just got off the phone with Madsie's Mother. I'm going to call back in 30 minutes or so, Madison's room was full of Doctors and Nurses.

This day in history

There were 125 distinct connections to the Blog.  At least 125 People following Madsie's progress.  Welcome.

Not much has been happening out of the ordinary, so nothing really to report.  Madsie called and sang happy
birthday to Rosie, that was very cute and sweet.

Regarding Fund raising

Another friend of the family; one of Madison's tutors is picking up the ball on the Peninsula.   Besty has numerous contacts and  ideas.  This is exciting !

Great news

The monies raised from the PFI group amounted to approximately $2,800.00 donated to the Cota site.  Other donations made directly to the family was a little over $5,000.00
Charlie and Lisa asked me to thank everyone that helped out.

Officially On

This coming Friday Madison will become officially active on the Organ transplant list for a new kidney.

A little scare

Madison was admitted to the Hospital yesterday. They are keeping her for a couple of days. It's not life threatening.

Update & Incremental Disclosure

I talked to Madison's mother Lisa today.  The plan is to proceed with the transplant the first of the year.  They are putting Madsie on the Donor match list.  The idea is to try and find a kidney that is a closer match to Madison.  If they can't find one by the time of the surgery they will go ahead and use Lisa's.

The result from the bone marrow aspirate was clear.  The procedure for the biopsy was somehow missed and is likely to be rescheduled shortly.  More pins and needles for the family.

I"m anxiety ridden.  The magic date was met and now the delay is putting me over the top.  I'm feeling all the, "can't wait till it happens" jitters the family must be going through.

The new information about closer tissue match not being disclosed when we first heard about the postponement leads me to believe the Doctors are managing the amount of information disclosed.  They appear to be protecting the family from too much information; possibly upsetting information.

Medical Update

Dr. Marina ( Oncology ), and Dr. Alexander ( Nephrology ) are recommending the trasnplant be postponed until the first of the year. The tests indicate that Madison's platelet counts are low. Since she responds so well to Dialysis, and because there is no emergency situation, it sounds like they want to give Madison's blood and bone marrow a chance to catch up in the platelet department.

Another component in the decision, is that after Madison's operation she will be immune suppressed and will need to be kept away from the general public for a period of 100 days. Since we are coming into the Holiday Season, the break will give the family an opportunity to enjoy the Holidays and rest up for the transplant.

Also, the bone marrow biopsy/aspirate procedure is happening Wednesday. The results will be available on Friday during the Clinic visit with Dr. Marina. Fingers are still crossed and prayers a plenty are being said while we await this final test. Dr. Marina told Lisa it was just a formality doing this test; but that could have been what I wanted to hear. Madison never has had cancer cells in her bone marrow. We were always on pins and needles awaiting the result of these 2 tests.

COTA

Today Dave Laughren ( I believe he is the President ) from COTA called. He was calling because of the large number of dontations that came in over the past week or so. Thanks to everyone, regardless of amount; it adds up quick according to Dave. We aren't told who or how much an individual donated. We hope to have a number regarding the total tomorrow. Dave didn't have that number, just that it was significant.

The Birthday details...

Madison's birthday party was at the Libby Lu in Pleasanton on the 8th of this month. These pictures are of her and some of the 15 little misses that were in attendance. I don't have pictures, but the cake and lunch celebration were at the Fresh Choice in the Stone Ridge Mall. Madison and her family live on the Peninsula. Pleasanton is the closest Libby Lu.
  

Happy Birthday

  

Happy Birtday

  

Happy Birthday...

  

!!!! HOORAY !!!!

Bone Scans and CT Scan came back clear !  The bone  marrow ( biopsy and aspirate ) test has not been done but we are so hoping that comes back clear too.  The results from that test should be back within the week.  We are all doing a happy dance.  The mood at Madsie's birthday party Sunday, was tense.   Madison of course was her happy, smiley self.

PFI

Thanks to all the PFI contributors to Madison's cause.  In case it wasn't clear, Madison is a very close friend of the family.  She and my daughter were very close.

Updated Calendar

Updated schedule.  The next battery of scans is scheduled for October 9th.  If the results come back clear ( no cancer ) then the surgical procedure to transplant a kidney will be November 6th. 

Time's approaching

The final battery of tests before transplant happens the end of this month. Seemed like it would never happen, and here it has snuck up on me. We've been out of communication with Madsie's family the past month; I can only imagine what they are going through. The plan is to take some time off to help them ( Lisa, and Madison ) recover after the surgery. Being the donor, Lisa ( Madsie's Mother ) will need time to recover too.

Scans

Yesterdays Scans came back clear. Such great news ! One more clear scan and on Madison goes on the list for a new Kidney. Praise God in Heaven. I think the last scan was in February.

Easter Sunday

Madison looked breathtaking in her new Easter dress. I forgot my camera so the memories will need to be without photos. Both families shared a wonderful time at brunch in Half Moon Bay, California.

In the NEWS

Some of Madison's newsworthy history
New April 2006
And here Gene Therapy
At Stanford's Art Program
And here in Austin
When I was 5 San Jose City College Times

Cosmo

Cosmo has returned home. He does however have Kitty acid reflux. He is taking kitty size doses of Pepcid AC.

Touching

Madison has an older cat named Cosmo. Cosmo has been sick and has been staying with the Vet over the past week. Lisa ( Madison's Mother ) takes Madison in for frequent visits. During the last visit, Madison was holding Cosmo stroking his head. Madison leaned closer to Cosmo so she was whispering in his ear. Madison said, "It's ok Cosmo, I know what you are going through" She truly does. Touching, that such a young girl can have such wisdom and understanding. Cosmo is a fortunate cat to be Madison's pet.

OOps

Almost forgot.... Just before Madsie's Scans, Rosie, Lisa and Madison visited Libby Lu Libby Lu for a makeover and ear piercing for Madison. Talk about heaven, Madison was so excited. After 6 weeks she will be able to come back to Pleasanton and get her "new" pair of earrings. Paigee would have tolerated it for Madison's sake.

Scan Results

No Cancer ! The Scans were clear. No white spots on the CT Scan. Hooray ! 8 more months clear and she goes on the list for a Kidney transplant.

Anxiety

Monday and Tuesday will be difficult days. The anxiety leading up to Scans is unexplainable to the uninitiated. The fear of what white spots will show up on a CT Scan will be worse than those felt by many. I know that fear. I remember August 05 after Paigee and I returned from Hawaii and the time leading up to her Scans. Those Scans ultimately led to the knowledge that the Tumor in her Brain was in fact growing and had broken the Blood Brain barrier, it was now in the Brain.

Charlie, Lisa and Dee Dee are on pins and needles. They can only be funtioning in a primitive state of fear waiting for the tests and the day leading up to the meeting with Dr. Marina and the reading of those Scans. You may remember that Dr. Marina was Paigee's Doctor too. Dr. Marina is a well loved woman. I often wonder how I can love someone so much even knowing she was at best only able to give us 32 months and that Cancer would take Paigee from us.

Madison is in our thoughts and prayers during this time. Our greatest hope is that she continue to remain Cancer free til November when she will be eligible for a Kidney transplant. My next greatest hope will be her continued health throughout her life.

Wow

Madison's trip to LA/Disney Land went off like a charm. Her favorite rides were Tower of Terror and the Indiana Jones ride. I have been designated the co-rider with Madison in future visits say her Parents, Charlie and Lisa. Paigee didn't like scary rides, so joining Madison at Disney would be fun. Madison was back to Palo Alto in time for her afternoon Dialysis session.

Update !

 

Madsie posed as a hamster ready to strike

Yesterday both Rosemary and I visited Madison at Dialysis. I didn't realize it had been since August at the Alameda County Fair that I had last seen Madsie. That was while Paigee was still alive. Look at all that hair ! This little girl is nonstop; school, etc...

Come this November ( if she remains Cancer free; that will mark the 2 yr point since her last Chemo ) Madison will be eligible to go onto the list of Transplant receipients, waiting for a donor match. 

A Child's dream come true

When Madison was 3, the Make A Wish Foundation provided Madsie with a trip to Disney Land and Knotts Berry Farm. Since then life has been a race to or from somewhere related to Madsie's Kidney diseaase or Dialysis. On a normal week when she isn't being admited to LPCH for Central Line infections or another calamity, Madsie is at LPCH on M/W/F for 5 hours a day doing Dialysis. With tutoring at LPCH she is able to keep up with her School classes ( 2nd Grade ).

The lastest news is that a second Wish Foundation responsible for granting wishes to children that have relapsed is contributing a significant amount ($500) toward a weekend trip to Los Angeles. Others from the LPCH network are contributing to the Hotel costs for the entire weekend. Further searching has uncovered free Disney passes for the weekend. Good fortune has smiled on Madsie's family and the logistics involving a 3 day trip to LA are beginning to look doable. After completing Dialysis Friday at 6PM, the family will leave LPCH at the Stanford University and begin the drive to LA. It looks like enough fun can be packed into Saturday and most of Sunday before Madsie needs to be back to LPCH Monday around 1PM.

Other exciting news is that the Doctor's office was able to convince Madsie's father that it was in his best interest to undergo testing of the lump ( everyone's worst fear is Cancer ) on his hand. Being a male I can relate to, "ignore it and it will go away philosophy". Results are pending and many people are anxiously awating that phone call.

Scans

Madison's next series of scans is scheduled for the end of next month. Scans occur at 3 month intervals for the uninitiated. A scan consists of a CT and likely a bone scan.

Nightmares

To tell or not to tell ! When a friend of your child dies, what's the best decision regarding what you tell your child. Madsie's parents agreed telling Madison would be the best. Lisa and Rosie talked and decided Madison would find out just by being at the Hospital and thought it would be best if she heard from her parents first. Madison is having nightmares now about death and dying. It makes it more real for her since she too is fighting Cancer.

They sang opera

I created this Blog as a way to communicate Madison's story to follow the efforts Rosie and I are planning to go along with the COTA ( www.cota.org - see donate below ) fund raising we are working on.


( Paigee on the left, Madison on the right )

Today Madison found out that her father may have Cancer too ! Cancer, the gift that keeps giving...

Click here to donate for Madison Kitz Donate by clicking here Most Hospitals require a $30,000 deposit for an organ transplant. That's a fairly substantial amount for anyone to raise.