Mini Golf and the Beach

We ventured out today and had some fun. We decided on activities that would keep us outdoors as Jordan is still not allowed in crowded places.

We settled on miniature golf and sitting on the beach. First stop was Walmart to buy a beach umbrella, sunscreen and sand toys. Jordan cannot sit in the sun, so the umbrella will protect her while the sunscreen and beach toys will be used by everyone else.

She has to avoid the sun exposure because it aggravates GVHD, and we certainly don't want any GVHD symptoms showing up now.

We had a lot of fun. We landed at Polynesian Putter in St. Petersburg. A very small mini golf place, not very sophisticated, but covered in lots of trees and provided plenty of shade.

We ate lunch at Ricky T's, outside on the patio under the umbrellas. And then we headed to the beach for about 2 hours. It was a great day, temp about 78 degrees with a nice wind blowing.

Roger had to work, so it was just mom and the kids, all four of them. It was so nice to spend time with them all....together. We plan on having more outings like this and are making a list of things we want to do, marking down the date when we actually do it.

Day + 248

Hi Everyone,

Jordan had her clinic visit yesterday along with several other tests to compare them to her baseline prior to transplant.

She started the morning with a Bone Density Test. This was something we had not done before, but apparently prolonged use of steroids can have an affect on your bone density, so they wanted to see how she's doing.

Her ECHO still shows 5ml of fluid around her heart. Normal range is 1ml, so we will continue to watch this closely.

She had a Pulmonary Function Test and she did great. We did this test at St. Joes instead of ACH so we didn't have the original numbers to see how she did when compared to pre transplant.

Her labs all came back great.

WBC = 4.68
RBC = 13.3
PLT = 288
IGG = 478
FK506 = 5.2
ANC = 3,400

She will need IVIG next week since her level is lower than 500.

Dr. Nieder lowered her prednisone dosage from 15 mg to 12.5. We have to do this in baby steps since last time they tried to move from 15mg to 10mg she had terrible cluster headaches. Her body wasn't producing enough natural steroids to make up for it.

He says if she is symptom free at 12.5, we can reduce it to 10mg in another two weeks.

We also got permission to only go to clinic once a month instead of every other week. We are very excited about this because it clearly means she is doing well enough that the doctors are comfortable only seeing her once a month. Huge progress!!

I've been thinking a lot lately about how amazing this journey has been. Jordan was lucky that she only had to endure 2 rounds of chemo, (one last Feb and one last March) before her transplant. Immediately prior to the transplant she endured one very tough round of chemo to ready her body for the new marrow. (3 rounds total, no radiation)

The fact that she even received donor marrow is a miracle in itself. The donor is unrelated and apparently it sometimes takes a very long time to find an unrelated donor. She was diagnosed in Feb 2006 and had the transplant in June 2006. Very quick timeframe for an unrelated donor.

Her transplant went smooth and she went home on Day +21. She has not been readmitted to the hospital for any problems relating to transplant. She was admitted because of the shingles, but only spent 4 days in hospital.

She continues to amaze us and her doctors with her recovery. She is diligent about taking all her meds and we keep her out of crowded places and don't have a lot of visitors to the house.

We don't know what else we are doing right, but we'll keep on the same track and hopefully it will take us to the one year mark in the same fashion it has taken us to the 8th month mark.

Your continued prayers are surely a benefit to her recovery too.

Last night we learned some more sad news. Another BMT patient at ACH lost his battle. Mark fought so bravely and for a very long time. Please visit his page and offer his family your support and prayers.

www.caringbridge.org/fl/mark

Much love to you all,

Katherine

Colts win the Superbowl

We rooted for the Colts last night in honor of Baby Donovan. He and his family are huge Colts fans. Baby Donovan lost his battle to Leukemia on January 20, 2007. I'm sure he was in Heaven rooting the Colts on. You can visit his page at www.caringbridge.org/in/babydonovan

One year ago

Day +233

One year ago today Jordan was admitted to St. Joseph's Children's Hospital. She had an MRI the previous day and I received an alarming call from her Pediatrician, Dr. Nadal to rush her to Dr. Tebbi at St Joes. He was the director of Oncology. We first had to go to Dr. Nadals office to pick up the paperwork, but while there he realized Dr. Tebbi's office had already closed. We called the next morning and got an appointment for 1pm with Dr. Wynn.

That day we were filled with fear of the unknown. Dr. Wynn was gracious and calmed our fears by stating that they didn't know anything at this point, by they wanted to run tests and admit Jordan to the hospital.

She was admitted a few hours later and spent the first few days on the surgical floor because the Pedi Hem/Oc floor, sadly, was completely filled with patients. How many kids have to go through this........

This first night in the hospital Jordan had a CT Scan and a MRI. These tests didn't start until about 11pm at night, which was quite a shock to me. I never considered they would run these tests so late, but a hospital never sleeps.

This was the same night the MRI tech said to me 'how long has your daughter had cancer?'. At this point she had not been diagnosed and I quickly relayed this to the tech who apologized and just kept working. I wonder now if she'll ever make that mistake again.

This week will be filled with anniversaries of many firsts in this battle that Jordan has so bravely fought. It will be a time for reflection on where we started, where we went and where we are now.

She is my hero.

I received a call from Dr. Petrovic today with wonderful news. I didn't realize the irony until now, while I write this entry. One year ago, we were so scared and today we are so grateful.

Dr. Petrovic called to tell me that Jordan's BCR able blood test showed no signs of the Philadephia chromosome, it is undetectbale. Thank you God! I have been praying for this a lot lately because about two weeks ago, Dr. P called to tell me that they found one philly cell in a batch of 10,00. The Philly chromosome is the precursor to the Leukemia - no need to say more.

Dr. Petrovic felt it was a fluke because at the time Jordan was fighting shingles and her body was focused on the shingles instead of warding off the chromosome and leukemia.

She ran the test again last Friday and gave me the results today. We are so thankful. They will continue to run the test monthly which has been their standard practice since the transplant.

Please keep praying for Jordans continued recovery and all those that fight along with her. There are so many children fighting this ugly beast. I had no idea how bad it was until I sit and think about all the children we have come to know this year that have lost their battle, just in the last twelve months.

Ovi
Jacob
Natalie
Danny
Brent
Kaitlin
Catie
Chassity
Christi
Jenna W
Joseph
Kate
Donovan
JJ
Makenzie
Jake
Jenna M

I'm now at a loss for words.