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
Monday, January 8, 2007
Day + 208
Hi Everyone,
Day +208
Jordan went to clinic today for a recheck on the shingles, which are healing nicely. She's has been quite nauseous the last week or so because they have her on such a high dose of antibiotic to cure the shingles. Thankfully she only has 3 more nights of the Valtrex.
I did get some rather sad news today. Our good friends Rick and Mari lost their son Danny yesterday afternoon. We became quite close to their family and if any of you have read this journal you would be familiar with Danny. He and Jordan both had Leukemia with the Philadelphia Chromosome. Both presented to the doctor last year with back pain that was later diagnosed as Leukemia.
They also both had their bone marrow transplants on the same day....June 14, 2006. We were 'neighbors' in the hospital during transplant, our rooms right next door to each other.
I became friends with their family, we were tied together in this close bond of BMT and reached each milestone on the very same day.
We've stayed in contact through e-mail and I have seen them many times during clinic and also when Danny was back in the hospital for various reasons.
I have a very heavy heart today, knowing that Danny has left this earth. But my load it lightened knowing that he is free of pain and no longer suffering. I also know his family has a tremendous faith in God and they will get through this with much grace.
Please say a prayer tonight for Rick, Mari and Ricky as they face these days without their son and brother.
God Bless you Danny. You will be missed.
Love to you all,
Katherine
Day +208
Jordan went to clinic today for a recheck on the shingles, which are healing nicely. She's has been quite nauseous the last week or so because they have her on such a high dose of antibiotic to cure the shingles. Thankfully she only has 3 more nights of the Valtrex.
I did get some rather sad news today. Our good friends Rick and Mari lost their son Danny yesterday afternoon. We became quite close to their family and if any of you have read this journal you would be familiar with Danny. He and Jordan both had Leukemia with the Philadelphia Chromosome. Both presented to the doctor last year with back pain that was later diagnosed as Leukemia.
They also both had their bone marrow transplants on the same day....June 14, 2006. We were 'neighbors' in the hospital during transplant, our rooms right next door to each other.
I became friends with their family, we were tied together in this close bond of BMT and reached each milestone on the very same day.
We've stayed in contact through e-mail and I have seen them many times during clinic and also when Danny was back in the hospital for various reasons.
I have a very heavy heart today, knowing that Danny has left this earth. But my load it lightened knowing that he is free of pain and no longer suffering. I also know his family has a tremendous faith in God and they will get through this with much grace.
Please say a prayer tonight for Rick, Mari and Ricky as they face these days without their son and brother.
God Bless you Danny. You will be missed.
Love to you all,
Katherine
Friday, January 5, 2007
Home again
Jordan is home!!!
She was released tonight, so she only spent 4 days in the hospital, twice as much as they projected. It always turns out that way, doesn't it. 24-48 hours ends up being 4 days. Oh, well.
We are incredibly thankful to her doctors and nurses for all the care she received while in the hospital. We even got to see a couple of nurses from the BMTU, that was a great surprise, since she wasn't on the 2nd floor which is where HEM/OC is located.
She still has to continue 7 more days of antiobiotics and she has to drink 2.5 liters of water every day to flush them out of her system, so they don't damage her kidneys.
They lowered her Cellcept and FK506. The Cellcept is used to suppress her immune system so her donor bone marrow doesn't attack her body. They lowered it a couple of weeks ago with great success, so now they are lowering it again.
She ended up getting IVIG while she was admitted even though her IG level wasn't below 500. It's been several weeks since she has had an IVIG infusion. Lowering the Cellcept has been a big contributor to her not needing IVIG every three weeks. We are looking forward to making that timeframe even longer since they are lowering it again.
Her spirits are up. She was thrilled to be coming home and Kennedy was beyond excited to see her. It was adorable. She really missed Jordan. They spend 24 hours a day together and she was literally heartbroken the first and second night Jordan was admitted. I found her sitting by Jordan's bedroom door, looking terribly sad, ears back, and she was kind of slouched over with her shoulders hunched forward. It was pitiful. She's much better now and so is Jordan.
Thanks to you all for the extra prayers for Jordan's speedy recovery. The power of prayer is amazing.
Please keep some other friends in your prayers as they are fighting very hard.
www.caringbridge.org/fl/taylor
www.caringbridge.org/visit/katehrischuk
www.caringbridge.org/ny/penelope
We lost a caringbridge friend this week too. Please pray for his family as they struggle through this loss.
www.caringbridge.org/ms/brentnason
Much love to you all.
Katherine
Monday, January 1, 2007
Shingles
Hi Everyone,
We've had an eventful couple of days. Jordan decided she wanted to start the new year off right by being admitted into the hospital. ;-) She's back at All Children's Hopsital (ACH). She was admitted on 01/01 because she has come down with a case of the shingles. Can you believe it? This is her first admission since she left the hospital on July 5th after her bone marrow transplant. She has done amazing since transplant and it's actually quite remarkable that she hasn't been admitted for anything since she left.
She broke out in a small rash on her right thigh and we were watching it to see if it got any worse before calling the doctor. We were hoping she would make it to clinic on Tuesday without it worsening, but we weren't that lucky. It spread like wildfire on Monday and became very irritated and was causing her A LOT of pain.
So, we called Dr. Petrovic and sent her an e-mail with a digital photo. She called back and said Jordan had to be admitted for high dose Acyclovir antibiotics via IV for approximately 48 hours.
Ironically this is the same antibiotic they took her off of about three weeks ago. We passed the 6 months post transplant mark and they were beginning to wean her off some meds, the first one was Acyclovir. She had been taking it as a preventative medicine ever since transplant to avoid these types of situations.
So, long story short, her immune system isn't yet up to conquering these type of things on it's own yet. She'll be back on the Acyclovir at home once she's discharged.
Luckily, she doesn't have any other symptoms, no fever or positive cultures, etc. It's just the shingles and she'll be happy as a clam once they are gone.
Please keep her in your thoughts and pray the pain isn't so horrible and that she has a quick recovery and comes home very soon.
On a different note, we have a caring bridge friend at ACH that continues to fight for his life. Please visit his site and post a message to his parents.
You can visit Mark at: www.caringbridge.org/fl/mark
We have another friend that we actually know pretty well. He had his transplant the same day as Jordan and our families became friends because of this unusual connection. His name is Danny and he is also fighting hard in PICU at ACH. Danny doesn't have a caringbridge site, but please say a few prayers for him too. He needs prayers for his lungs to recover so he can come off the vent and wake up to his family.
As always, we appreciate you checking in on Jordan and keeping her in your prayers.
Love to you all,
Katherine
Day + 201
Happy New Year!
Day +201
It's hard to believe it's already a new year.
How do you measure a year? 365 days, 12 months, 52 weeks, 8,760 hours, or 525,600 minutes? We look forward to a new year, making resolutions, setting goals and hoping for the best.
My hope this year is that I can measure it differently. Measure it by laughter and love, smiles and giggles. To see life through the eyes of a child, full of hope and fun. Live in the moment and enjoy all the moments I am given because I never know when they will be taken away.
Never pause to tell someone you love them and pray every day.
My hope this year is that all of our children fighting for their lives continue to beat the beast of childhood cancer. May they continue to receive the best care available and win the war. Here's hoping that 2007 is not filled with needles, biopsies, surgeries, chemo and radiation, but instead with clear scans, good blood counts and strong bodies.
Lots of love to you all,
Katherine
Day +201
It's hard to believe it's already a new year.
How do you measure a year? 365 days, 12 months, 52 weeks, 8,760 hours, or 525,600 minutes? We look forward to a new year, making resolutions, setting goals and hoping for the best.
My hope this year is that I can measure it differently. Measure it by laughter and love, smiles and giggles. To see life through the eyes of a child, full of hope and fun. Live in the moment and enjoy all the moments I am given because I never know when they will be taken away.
Never pause to tell someone you love them and pray every day.
My hope this year is that all of our children fighting for their lives continue to beat the beast of childhood cancer. May they continue to receive the best care available and win the war. Here's hoping that 2007 is not filled with needles, biopsies, surgeries, chemo and radiation, but instead with clear scans, good blood counts and strong bodies.
Lots of love to you all,
Katherine
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