Hi Everyone, Day +300
Jordan and Kennedy attended their first puppy class together last night. Jordan is really enjoying this class and I can't wait until they start the introduction to Agility. We think Kennedy will be a natural, she's as quick as lightning and very agile. Probably a good combination to compete in Agility.
We go back to clinic next Monday, 4/16 and we have to visit the Endocrinology department because Jordan's ovaries are no longer working. She will have to start taking Estrogen. This is apparently very common in girls with BMT as the intense chemo kills all of your eggs and the ovaries pretty much dry up. Sounds yucky, but it's a fact.
Hopefully we will again be able to decrease the Prednisone by 2.5 mg. Little by little we are making our way to getting rid of these drugs and letting Jordan's body function on it's own. They haven't yet tested her bone marrow to see if it can fight off a bacteria or virus because she is still on immune suppressant medications and it defeats the entire purpose of the test.
Jordan has started looking at flight schedules to California. She still has the all clear to go visit her dad and grandparents and is very much looking forward to it. After a year in the house, who wouldn't want to get out of dodge? She is taking Kennedy with her on the plane and trying to figure out how she can have her in the cabin instead of in cargo. Can you say.....service dog?
Next month Jordan will turn 17. Wow! It's seems so long ago that we started this journey when I think about her being diagnosed at 15, but in reality she turned 16 right before transplant in June 2006, so it's only really been 14 months.
We still pray for our cancer friends and check on them daily. We are so blessed that Jordan has had an amazing medical staff to get her through this journey, especially with the results that we have had. We are also very blessed to have met so many amazing people along the way. People we will always hold close to our hearts.
Thank you all for checking on her and praying for her continued recovery.
Lots of love,
Katherine
Tuesday, April 10, 2007
Monday, April 2, 2007
Osteoperosis - Isn't that for old ladies?
Hi there,
It's been awhile since I've updated, but Jordan is doing great.
She only has to go to clinic once a month now! Yeah! Progress is being made.
It turns out that she now has Osteoperosis because of the extended use of Prednisone, so she has to take two new medications to help correct it.
They have decreased her Cellcept again and she is only on 10mg of Prednisone. We are getting there, slowly but surely.
Tonight she starts Super Puppy Class with Kennedy. There is a facility very close to our home called Cool Critters. This class teaches basic obiedence and intro to agility. Jordan wants to compete in Agility with Kennedy. It will be very good for her to be up and moving around, getting a bit of exercise, plus it will be good for Kennedy too.
Thank you for checking in on Jordan. We hope you all have a great week.
Lots of love,
Katherine
It's been awhile since I've updated, but Jordan is doing great.
She only has to go to clinic once a month now! Yeah! Progress is being made.
It turns out that she now has Osteoperosis because of the extended use of Prednisone, so she has to take two new medications to help correct it.
They have decreased her Cellcept again and she is only on 10mg of Prednisone. We are getting there, slowly but surely.
Tonight she starts Super Puppy Class with Kennedy. There is a facility very close to our home called Cool Critters. This class teaches basic obiedence and intro to agility. Jordan wants to compete in Agility with Kennedy. It will be very good for her to be up and moving around, getting a bit of exercise, plus it will be good for Kennedy too.
Thank you for checking in on Jordan. We hope you all have a great week.
Lots of love,
Katherine
Saturday, February 24, 2007
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.
Saturday, February 17, 2007
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
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
Monday, February 5, 2007
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
Friday, February 2, 2007
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.
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.
Friday, January 26, 2007
Another ECHO
Hello Everybody,
Sorry for the long delay in updating Jordan's site. She has been doing great. We went to clinic today, but first she had to have another followup Echocardiogram because ever since she came down with the shingles, she has had fluid around her heart. It is not considerable, but they keep checking every 2 weeks or so. Today's results were the same, still about 5ml of fluid around the heart....normal is 1ml. Dr. Dudlani (cardiologist) is not concerned, but wants to repeat the Echo again in about 2-3 weeks to see if it's any better.
She had labs drawn today, as usual, but we weren't in clinic long enough to get the results and Dr. Petrovic. She said she would call with the results, but hasn't yet. No news is most likely good news. Her counts have been stable for many months, so we are not expecting any surprises.
We hope you are all doing well. Thanks for continuing to check up on Jordan, it puts a smile on her face to read your guestbook entries.
Lots of love,
Katherine
Sorry for the long delay in updating Jordan's site. She has been doing great. We went to clinic today, but first she had to have another followup Echocardiogram because ever since she came down with the shingles, she has had fluid around her heart. It is not considerable, but they keep checking every 2 weeks or so. Today's results were the same, still about 5ml of fluid around the heart....normal is 1ml. Dr. Dudlani (cardiologist) is not concerned, but wants to repeat the Echo again in about 2-3 weeks to see if it's any better.
She had labs drawn today, as usual, but we weren't in clinic long enough to get the results and Dr. Petrovic. She said she would call with the results, but hasn't yet. No news is most likely good news. Her counts have been stable for many months, so we are not expecting any surprises.
We hope you are all doing well. Thanks for continuing to check up on Jordan, it puts a smile on her face to read your guestbook entries.
Lots of love,
Katherine
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