It all started a year ago today

Good Morning,

One year ago today, I took Jordan to th ER at 4:30 in the morning because she woke up with severe back pain and the tops of her legs were numb.

Little did we know that we would become experts in the realm of childhood Cancer, even though an actual diagnosis was still 6 weeks away (Feb 6).

It's true that time waits for no one. It just keeps marching on no matter what you're dealing with.

It's hard to believe that we've been survivors for a year already.

Much love to you all,

Katherine

Feeling better

Hello Friends,

Thanks for the extra prayers for Jordan....they worked. She is feeling much, much better. She did test positive for the Flu virus, but I wasn't home to receive the call so I didn't get a chance to ask Dr. Petrovic if this has any relationship to her just receiving the flu shot almost two weeks ago. I'll ask her when she calls Jordans lab results in to us. As of now, Jordan is scheduled to receive IVIG on Friday afternoon. It's so nice to be able to have this done in the comfort of our own home.

We have a couple of dear caring bridge friends, whom we've never met, but who are in desperate need of your prayers. Please stop by and visit Mark and Kate and say some prayers for their earthly healing.

www.caringbridge.org/fl/mark
www.caringbridge.org/visit/katehrischuk

Have a safe and Happy New Year.

Lots of love,

Katherine

Trip to ER

Good morning,

Well to not take any chances, I called Dr. Petrovic yesterday and told her that Jordan had a bad cough and runny nose and I was worried about her getting sick, since everyone but Roger had been sick the last week.

She had us bring Jordan to the ER at ACH to run some labs and tests. She is a very good doctor and never takes chances, she wants to rule it out fast before it worsens. We are very lucky to have her and Dr. Nieder.

So, they did a chest X-ray, a sinus CT Scan and a nasal fluid test, plus drew all her normal labs and a few extra to check for potential virsuses. Since they drew all her normal labs, we now don't have to go to clinic on Tuesday, unless Jordan becomes worse.

Chest X-ray was all clear, the CT Scan showed some mucus in her sinus, but not very much and we didn't get the results of the nasal fluid.

The nasal fluid test is not a fun one, they squirt this fluid up your nose and then it all comes back out along with any stuff that was in your nose. The first time Jordan had this done (prior to BMT), they stuck this tube slimed up with vaseline (or something) in her nose. I kid you not, it was about 4 inches long and they shoved it in her nose and since it was attached to a syringe, they pushed all the fluid in. It happens very quickly, but is quite tramatic. The second time (several months later), she protested so they devised an alternative method and used a baby syringe. This worked much better and so when the nurse showed up yesterday with the slimed up tube, we immediately said 'no', use a baby syringe and she did.

Dr. P gave us a prescription for antibiotic and sent us home. She thinks Jordan will be fine and didn't prescribe anything for the dreaded cough. She says she doesn't like to suppress it too much because it's the bodies natural way of clearing out the lungs.

So, I took the prescription to CVS and told them I'd be back in an hour or so. I went back at 6:15 only to find out the pharmacy was closed for the night. WHAT!!!???

I have never seen a CVS pharmacy close before 9pm, how did we luck out? This is a new pharmacy location to us because we moved into our new home in November and it's right on the corner, very close. It never entered my mind that they would close at 6pm on a Saturday.

It's a good thing Jordan isn't running a fever and really needed the antibiotic right away. So I'll be off to CVS as soon as they open this morning to pick it up.

She is still sleeping so I don't know if anything has worsened, but as of last night at 11pm she seemed pretty good, so I'm keeping my fingers crossed that she wakes up that way too.

Thanks for all the extra prayers to keep her from getting really sick and needing to spend Christmas in the hospital.

I hope Santa is good to you all. You have been a blessing to us this year and deserve a nice treat.

Merry Christmas!

Lots of love,

Katherine

Cold symptoms

Hello dear friends,

Jordan has been doing well, but has come down with a cough and runny nose. So far, no sign of fever, thank God. This is very scary to us and we hope she can fend it off without it getting worse.

We have all been sick in the house (except Roger - he has luckily escaped it) so I'm worried Jordan might be catching what we have all had.

Please pray that she does not and that her body will stay strong and fight this off. We don't want her to get sick, she's done amazingly well since transplant and this is the first sign of any illness.

Plus she doesn't want to spend Christmas in the hospital.

Keep the prayers coming, she really needs them right now.

Love to you all,

Katherine

Drive In Discovery

Hi Everyone,

Everything has been going well. Jordan doesn't have clinic tomorrow as she now only has to go every other week. It's a nice break in between.

We did something fun last night and went to the Drive In movies. I swear I had no idea there were any of them left. There are actually two of them fairly close to our house. What a wonderful surprise!

It was great because we now have a way for Jordan to enjoy the latest movies without the risk of being in an enclosed space with a hundred people that might possibly be carrying around any germs. Not that anyone would go to the movie theater with a cough or cold or not wash their hands. :-)

We are finishing up our Christmas shopping and still unpacking from the move. Little by little it's all getting done.

Madison and Noah are now offically on Christmas break. They are very excited to have two weeks off of school.

Noah's birthday will be here very soon too, so we also have to plan for a party. He will be six on Januray 7th.

We hope everyone has a great week. We are happy to report that lots of our caring bridge friends are doing better right now. Please continue to keep them in your thoughts.

Lots of love,

Katherine

Day + 180

Day +180

Hello friends,

Jordan had a clinic visit with Dr. Nieder today. Everything is still looking good.

Her labs were:

WBC = 4.09
RBC = 15.1
Platelets = 318
ANC = 2,900

A couple of weeks ago the doctors mentioned they were again going to wean down the Prednisone from 15mg a day to 10mg a day. Jordan changed her dose to 10mg and started having 'cluster' headaches. This went on for a few days and we called the doctors and they asked to have her brought back in to clinic to have her Cortisol level checked.

Apparently her Cortisol level was too low, so they put her back on 15mg of Prednisone and the headaches have disappeared. This will mean an even slower weaning off the dreaded steroids so her body can catch back up and produce it on it's own. She really isn't eating very much these days and has lost about 7 pounds. Dr. Nieder says this is typcial when the steroids are being decreased. All that weight she gained while on them, will slowly start to fall off.

Today, Dr. Nieder said she can stop taking the Acyclovir and she can decrease the Lasix from 25mg to 10mg. She also gets to decrease the Cellcept from 750mg to 500mg. He was still waiting on results for Magnesium and Potassium because those doses might also be decreased.

By decreasing the Cellcept we have to watch out for those dreaded GVHD symptoms. We will keep our fingers crossed and pray they don't rear their ugly heads.

Cellcept is one of the drugs used to fight GVHD, along with the FK506.

It's good news that they are starting to decrease the meds, but it also makes us a little nervous. The meds fighting GVHD are kind of a safety net of sorts.

Jordan also received a flu shot today, her first ever.

On a holiday note, we have finally put up our Christmas tree and some lights outside. It's beginning to actually feel like the holiday season now.

Madison and Noah are both very excited about Santa coming to visit.

It's hard to believe that all of this stuff with Jordan actually started last December. Where has the year gone? Time waits for no one.

Thanks for all the prayers and well wishes. It's such a blessing to receive them all.

Please continue to prayer for Taylor. She's fighting hard.

Little Ellis lost his fight recently, please keep his mom and dad in your prayers too.

www.caringbridge.org/fl/taylor
www.caringbridge.org/mn/ellis

Lots of love,


Katherine

Crap sandwich

Good Morning,

I ran across the following story on another website (www.caringbridge.org/visit/morganelizabeth) Morgan's mom posted it and it's actually written by someone else. She borrowed it and it touched me too so I wanted to share it on Jordan's site.

The Crap Sandwich -- By Kendrie's Mom

Imagine every year for Thanksgiving that you and your family go to a wonderful all-you-can-eat buffet. The food is always great and you look forward to getting the same delicious meal, year after year. So this year, you give your standard order to the waitress: an appetizer of “love”, a “caring” salad, the side dishes, “thoughtfulness” “compassion” and “laughter” and a big, juicy entrée of “good health and happiness for everyone”. The waitress brings you everything you asked for but the entrée. Instead, in front of you on the table, she places a big, fat crap sandwich. And the conversation goes a little something like this:

You: “excuse me, I didn’t order this crap sandwich”

Waitress: “house special. You got it without asking”

You: “but I don’t want a crap sandwich. I want good health and happiness for everyone.”

Waitress: “well, you got a crap sandwich.”

You (getting upset) “well take it back and give me what I asked for instead!”

Waitress points to a sign that says “Absolutely NO substitutions”

You say adamantly: “there is positively no way I am going to be able to choke down this crap sandwich and I think it’s really unfair for you to expect me to”

And the waitress replies “hey, look. You’ve still got love, caring, thoughtfulness, compassion and laughter, so try to appreciate those. Oh, I almost forgot, here’s your condiment tray for the crap sandwich. You also get big overflowing bowls of fear, worry, anger, guilt and resentment. Bon Appetit!”

And so you’re looking around the restaurant, feeling really grumpy about your crap sandwich, and you realize that there are a lot more people with crap sandwiches than you ever thought possible. And from the looks on their faces, none of them ordered them, either. Then you see a couple of tables with really, really big, Dagwood-sized crap sandwiches and you summon the waitress again. “Excuse me, why are their crap sandwiches so big?” And she explains that those people are facing situations even worse than yours. Their kids haven’t responded well to treatment, have had cancer relapses, or worse yet, died. And you start to think maybe your crap sandwich isn’t so bad after all. Maybe you should keep your big mouth shut, choke it down, and be glad when it’s all gone and everyone is well again. And then, right then, your waitress reminds you of one last thing: “Management reserves the right to serve you another, bigger crap sandwich, anytime they want”

What do you say when you realize that you can be delivered an even bigger crap sandwich at any time, without warning. Although Jordan has done remarkable throughout this entire storm, you never know if another dark cloud is lurking around the corner. You're afraid to look for it, you don't want to anticipate the rain, yet you move on each day, a fighter - against this evil beast. You do the best you can and you survive. Jordan is a true survivor, she amazes me daily with her strength and grace. Where did she get it from? How did she dig deep and find it? She never knew she was this strong until she had to fight for her life. She is a brave young lady with lots of plans. This is just a detour on her journey. I am so proud to call her mine.

Much love to you all. Thank you for your thoughts, prayers and notes in the guestbook.

Please pray for our friends out there. Some of them we know personally, some we only know from Caring Bridge, or through other friends. They too have been dealt a crap sandwich, some bigger than others.

www.caringbridge.org/fl/taylor
www.caringbridge.org/mn/ellis
www.caringbridge.org/visit/carleevessel
www.caringbridge.org/visit/sierrakesler
www.caringbridge.org/visit/patrickwills
www.caringbridge.org/fl/mark
www.caringbridge.org/visit/morganelizabeth
www.caringbridge.org/fl/katia_leukemiapage
www.caringbridge.org/fl/jacob

I'm a survivor

An inspritational message to those still fighting their fight:

--------------------------------------------------------------------
I have cancer...
but cancer does not have me.

Cancer is not who I am,
it is only a bend in the road that is my life's journey,
an unexpected detour on my path.

It is a lesson in the cosmic schoolroom that is human existence.

So I will pause to rest...
and heal...
and study the lesson,
before I move onto my life without cancer.

I will not give into fear,
and I will not be discouraged by setbacks.
Setbacks are only opportunities to review the lesson.

I will not be ashamed of my scars.
Scars are the brushstrokes in the masterpiece that is my life.

I will be thankful for the many blessings cancer has brought into my life:
People I never would have known,
love that I had never been still or quite enough to witness,
humility I needed,
strength I thought I had lost,
courage I never knew I had.

I will remember that I can still have fun,
that it is okay -even healthy- to be silly.

I will remember that to find the joy in rainbows,
I must endure the rain.

And I will remember always that...
while I may have cancer,
cancer does not have me.
-----------------------------------------------------------------
(can also be found at www.thesurvivormovie.com as a movie)

Jordan

Day + 166

Day +166

Hello Everyone,

We hope you had a fabulous Thanksgiving. We enjoyed ours with family from Naples and Atlanta. It was so nice to have all of us together. We certainly had a lot to be thankful for this year, Jordan's donor was at the top of the list.

Jordan had clinic today at St. Joe's. She's been feeling pretty icky since Wednesday, having headaches, nausea, etc. After leaving St. Joe's, I sent Dr. Petrovic and Dr. Neider an e-mail explaining her symptoms and they asked to bring her to ACH to run some extra labs to look for potential viruses.

Hopefully everything will come back with good results.

Her labs today were:

HGB = 12.4
WBC = 5.5
PLT = 347
ANC = 4641
FK506 = 14.4
IG = 472

Her labs all look great, so it's a bit puzzling as to why she isn't feeling 100%. Since her IG level is low, she'll need a infusion again next week.

We did move into our new home. It's been a lot of work and will continue to be for a few more weeks. Unpacking and sorting through old boxes is never fun. It's very tedious and boring, but a necessity.

Jordan's new bedroom furniture arrived on Saturday. She was very excited to get it and it looks great in her room. We still need to buy furniture for her bonus room. She needs an entertainment center and couch, tables, etc. It's going to look like a family room when we're done. We call the upstairs her 'apartment'. If she had a kitchen, she'd have everything she needed. Lucky for us, she doesn't, so she has to come downstairs and hang out with us if she wants to eat. :-) It's good exercise for her to go up and down the stairs. It will help rebuild the muscles in her legs.

Kennedy is doing great. She is a total joy and brings us lots of laughter. My sister Megen, her son Cody and their Boston Terrier Jack were here for Thanksgiving. Kennedy had a friend to play with and she thoroughly enjoyed it. Jordan created a website for Kennedy on Dogster.com. This is sort of like my space but for dogs. They also have Catster.com for all the cat enthusiasts out there. You can see Kennedy's website at www.dogster.com/pet_page.php?i=420383

The rest of us are doing well. We are coming down with a bit of a cold and hoping Jordan doesn't catch it.

We have to start our holiday decorating. I love Christmas and enjoy dragging out the decorations. This year will be even better since we are in our new home.

Lots of love to you all. Thanks for checking on Jordan.

Katherine and family

Day + 152 again

Day +152

Hi Everyone,

Jordan continues to do great. We went to clinic today and saw Dr. Neider. Her counts all look good. RBC = 12.2, WBC = 5.74, Platelets = 348, FK506 = 11.9 Jordan had to get IVIG again today. The good news is that they are working with our insurance company to see if the next dose can be given at home. Dr. Neider said she can reduce the Prednisone again on 11/23 to 10 mg daily. She also gets to stop the Lantus (insulin) injections because her sugar levels are no longer too high. Her sugar levels have dropped dramatically over the last couple of weeks, since the Prednisone dose keeps decreasing. She is more than happy to stop the injections. She will only need to do the Humalog (fast acting insulin injection) if her sugar level is high. Dr. Neider says she has some Scleroderma, because of the GVHD of the skin. This is best described as tightness in the skin (arms and legs) and if you squeeze the skin, it dimples. (looks like cellulite) He recommended deep tissue massage and said that some doctors have seen improvement when massage has been used. We saw Mari Fernandez today in the hospital. Her son Danny got his transplant the same day as Jordan, they were neighbors in the BMTU for 4 weeks. He isn't doing so well and could use some prayers sent his way. He is suffering from some severe GVHD and has been admitted back into the hospital. Please keep him in your thoughts. On a lighter note, Kennedy is adding a ton of joy to our home. She is the sweetest puppy ever! She is also a very good girl. She had to spend the entire day in the bathroom today since we were at clinic for 8 hours. She didn't even have one accident and went potty as soon as Jordan took her outside. Thank you Karen for starting the potty training process. We can't thank you enough for that. :-) We close on our new home tomorrow and are really looking forward to moving in. Thanksgiving will be so much fun this year with some of our family here to share it with us. Thanks for checking in on us and a continued thanks for all the prayers and well wishes for Jordan's recovery.

Katherine and family

Day + 152

Day +152

Hi Everyone,
I decided to go ahead and update my journal for my Mom today. This morning we had to go to ACH for me to get in IVIG infusion. Hopefully, this will be the last time I have to go there to get it done. The doctors are looking into setting up for me to have it done from home from now on. So, I spent pretty much all of my day in the Hemac/Oncology clinic. I was glad to get home, although it wasn't until about 4:15 or so. My counts were all good and in the normal range. Some great news is that I can finally stop taking the insulin Lantus. I was having to inject about 30 Units of it a day, but my blood glucose levels have been nice and low. Since the doctors want to avoid Hypoglycemia, I'm just going to stick to the oral insulin, Actos, and the fast-acting injections, Humalog. It is a relief for the steroid symptoms to finalluy be going away. I'm still going to be 15 mg a day, because I haven't been on it a full week yet, and I was on 20 mg for two weeks, so we are going to keep that schedule. Other than that, theres not much else to report. Kennedy has just been a pure joy to have around. I was so proud of her today when I got home. We were worried she might have an accident being home for hours alone, but she didn't! She held it the entire time, until I took her out once I got back. (I decided to put her in my bathroom while we were gone, with her toys, food, and crate). Right now she's enjoying one her of toys, trying to destroy it, but luckily it's still pretty much intact.

Kennedy arrives

Jordan is doing great, especially since we picked up Kennedy from the airport last night. We didn't know what to expect and planned for Jordan and Madison to wait in the car because I thought I had to go into the airport to the baggage claim area. It turns out we picked her up at Air Cargo and didn't have to go anywhere near the airport. Kennedy's flight landed at 5:00pm and we had her in our arms at 5:30. Needless to say, Jordan is sooooo happy to finally have her here. She's been waiting since August 27 (Kennedy's birthday). Kennedy will add so much joy to Jordan's life. She is absolutely adorable and very sweet. In typical puppy fashion, she hops around prancing and following Jordan everywhere. So far, night one, she whined each time she had to go outside to potty and did it again this morning. We have to thank Karen Street. She has given us an amazing gift, in allowing Jordan to purchase Kennedy. If you want to learn more about the breed you can visit Karen's website at www.aliakkennels.com

Day + 145

Day +145

Jordan had a clinic visit today. We went to St. Joes and saw Dr. Wynn. It's been a long time since we've seen him. Her counts are all very good. Platelets were 294, WBC was 6.2, RBC was 11.7, ANC was 5034, FK506 was 9.8. The only level that was low is her IG level at 417 which means she has to get IVIG on Monday at ACH. The need for IVIG happens about every 3 weeks. She also gets to reduce her Prednisone down to 15 mg a day from 20. We are heading the right direction on the Prednisone, hopefully her sypmtoms will decrease soon and she can stop taking insulin shots plus all the other meds she needs to counteract the Prednisone side effects. Her spirits are great, she is getting really excited about Kennedy coming. We finally have the flight information, and she will arrive this Friday the 10th.

We are also closing on our new home next week so we have lots of things going on and will be very busy. We are getting ready for Thanksgiving and can't wait to see Dad, Sharon, Caitlin, Mackenna, Megen, Cody and maybe Dayle. It will be so nice to have a lot of the family together this year. We have a lot to be thankful for.

Thank you for all your continued prayers and good wishes for Jordan. One of our little friends from St. Joes is in need of some extra prayers, please keep her in your thoughts too. Her name is Taylor, you can visit her site at www.caringbridge.org/fl/taylor

Friends with Cancer

Lately I've been visiting other Caring Bridge sites for some of the children we have met at St Josephs. Amazing Jacob Duckworth lost his battle to Cancer this summer. He was an adorable little boy that we saw many times in the hospital and clinic. Although I only met his mom Heather once, she seems like an amazing woman. His dad Donnie is a lot of fun and always made us laugh. We pray for their family and hope they are handling everything as well as they possibly can. Another little girl we know is Taylor Arrington. She is going through a lot right now and we continue to pray for her recovery. You can visit either of their sites at: www.caringbridge.org/fl/jacob www.caringbridge.org/fl/taylor I'd like to thank everyone who has prayed for Jordan during this long year. All of your prayers have been heard and we cannot thank you enough for that.

Puppy bound

Wow, it's been a month since I've been here to update her journal. Jordan continues to do very well. We saw Dr. P today and she gave us the good news that we can now change our clinic visits to every other week. Can I say, it's about time? Thank goodness. The drive to St. Pete every week is long and it takes so much time out of our day. Every couple of weeks it causes Jordan to miss Spanish class because she has to get an infusion of IVIG. They have decreased her prednisone level down continually over the last several weeks. She is now only taking 20 mg in the morning. She is not as shaky or emotional anymore. We do have to watch carefully for signs of Graft vs Host disease as they get her off the prednisone, since it helps to ward off GVHD. She has had a problem the last few weeks related to swelling. Her ankles tend to disappear. They put her on Lasik to help get rid of the water she is retaining. This is yet another symptom of the Prednisone. We will be so glad when she is off of it completely. The skin on her arms and legs are so tight to the touch. Her skin has been stretching because of retaining water and since it's so thin from the Prednisone, she has many stretch marks on her tummy, arms and back. They look painful, but she says they are not, however they do itch a bit.

We are getting ready for Halloween. Madison and Noah are going to be Pirates together. Jordan may walk around the neighborhood with us, but I worry about her ankles swelling, so we'll have to wait and see.

Her puppy will arrive in a week or so. She is getting an Alaskan Klee Kai. The breeder is located in Illinois. The web address is: www.aliakkennels.com This dog is rare in the US and the best way to describe it is as a miniature husky. They are absolutely adorable. Her doctors say she has the all clear and they think the puppy will do her a lot of good, aiding in her recovery. She'll have to walk it every day, so this will help redevelop her leg muscles, which tend to be weak because of the lack of exercise over the last 9 months.

She has named the puppy Kennedy. She is so excited about this she can hardly stand it. We did our shopping last weekend for all the puppy stuff. When we get Kennedy, I'll be sure to add some pics of her and Jordan here on the site.

Day + 100 - Congratulations!

DAY 100!!!

I cannot believe it's day 100 already. Jordan has reached this milestone with very little difficulty. We have continued to go to clinic at ACH every Monday morning for the past couple of months.

She has had so many medication changes, it would be impossible to list them all and it's really not relevant, so I won't bore you with the details.

The biggest obstacle for her has been the continued dose of Prednisone. Prednisone is a steriod and it has less than desireable affects on the body. It causes puffiness, shaking and high strung emotions. Jordan is very sensitive, even more than normal because of the prednisone.

It has also caused her sugar levels to skyrocket. Because they have stayed in the 300-400 range, she was put on insulin. She has been giving herself insulin injections and taking insulin by mouth every day. She has to test her blood three times a day and if it's higher than 150 she has to give additional injections of fast acting insulin.

Needless to say, she does not enjoy this one bit, but has taken it in stride, just like everything else.

Her doctors are amazed at her and tell us all the time how wonderful she is. She is an A+ patient, she is very involved in her care and doesn't miss taking any of her meds. Since she has been so careful about taking her meds, her recovery has stayed on track.

Not once during the 100 days did they even mention that she would have to be hospitalized. Apparently this is a frequent occurrance for teenagers because they don't take their meds as prescribed. The last thing she wants to do is end up in the hospital again, so she is very careful about taking good care of herself.

In addition to all of her medical routines, she is back in school. She is taking 3 classes on line at Florida Virtual School and 1 class from Hospital Homebound. She is doing very well, especially considering two of her classes are Advanced PlacEment English and History. She is also taking Chemistry and Spanish. She will not be able to attend school again until her Senior year starts next August.

At least she gets to be at home and isn't stuck in the hospital.

I am so lucky to have her as a daughter. I am very proud of her and how she is handling this fight. She is stronger than she ever knew and will be able to overcome anything that stands in her way.

CONGRATULATIONS JORDAN ON 100 DAYS!!!!

No evidence of Leukemia

Dr. Petrovic called today to tell us that the bone marrow biopsy was clear of all leukemia cells and that it was at greater than 99% donor cells. This was amazing news. It means that Jordan's donor cells are not allowing her own bone marrow to grow.

We have continued to see Dr. Petrovic or Dr. Neider every Monday morning in clinic. Every week they make small adjustments to her med dosages as well as add or remove meds, depending on how she's doing. So far, so good.

Day + 28

Day 28

We went back to ACH today to have the Broviac removed and to have a bone marrow biopsy done. They will check the bone marrow to determine what percentage of it belongs to Jordan versus the donor. They will also be on the look out for leukemia cells.

Jordan did well in surgery today and the bone marrow draw was quick, which is always a good sign that it's not infected with disease.

She came out of surgery and was not weepy this time. I think it was different this time because she has had surgery at ACH before and knew what to expect in the recovery room, etc.

We say Danny Fernandez and his mom Mari today. Danny is also on day 28 post transplant and was going through the same surgery as Jordan. He seems to be doing well although they have not been discharged yet.

Day + 21 - Going Home!!!

Day 21

We are going home today. It is so hard to believe that this stay in the hospital was 2 weeks shorter than Jordan's very first stay in February when she was diagnosed. How can it be that the BMT was so much easier to handle than that first set of chemo. I think its mostly because we knew the expectations up front. He doctor's were amazing by providing us with all the information and possibilities that could happen during transplant. In February we were entering a world that we never wanted to be a part of. There were so many questions, and it seemed like so few answers. We cannot thank the BMT team enough for all of their dedication to Jordan's care. We will miss seeing you every day, but look forward to going home to recover.

The pictures are of Jordan with Bethany Harmon (NP) and Mati her BMT coordinator. The second picture is of Jordan and Dr. Nieder.

Jordan has 9 different meds to take each day.

Tacrolimus (FK506) 1 5mg capsule twice a day.
Fluconazole 2 200 mg tablets once a day
Actigall 1 300 capsule twice a day
Neutraphos 1 packet twice a day
Prevacid 1 30 mg capsule once a day
Acyclovir 1 200 mg capsule three times a day
Prednisone 9 10mg tablets 5 in am 4 in pm
Norvasc 3 2.5mg tablets twice a day
Magnesium Oxide 2 400 mg tablets twice a day
Kytril 1 1mg tablet if needed for nausea

Day + 17

Day 17

Jordan’s Levels Normal Range
Weight 48.8
WBC 2.33 3.84 to 9.84
Hemoglobin 9.6 10.8 to 13.3
Platelet Count 35 175 to 345

Jordan is doing remarkable. Her bone marrow is totally engrafted and continues to produce new cells. It’s very exciting. We were expecting for her to have to stay in the hospital for 6 to 8 weeks and as of now they are talking about her going home next week, which would only be a 4 week stay.

This past week, she started feeling so much better. She isn’t nauseous any more and is able to eat small meals and has much more energy. She’s been getting up out of bed and sitting in the chair next to the window painting. She’s been able to shower without getting weak and needing help getting dressed. There has been a lot of improvement in the last week and it’s been great for her physically and emotionally.

Since Day 4 we've only been journaling her counts. He progress has been consistent and she hasn't had any setbacks. We are so blessed that this seems to be working. We know we have such a long way to go, but each day is a miracle that we are truly grateful for.

Day + 4 Happy Father's Day

Day 4

Jordan’s Levels Normal Range
Weight 52.2
WBC 0.05 3.84 to 9.84
Hemoglobin 10.7 10.8 to 13.3
Platelet Count 31 175 to 345

Today is Father’s Day. Jordan was feeling a little uneasy this morning when she got up to take a shower. After finishing the shower and relaxing for a bit, she felt much better and was able to eat some breakfast.

Day + 3

Day 3

Jordan’s Levels Normal Range
Weight 52.8
WBC 0.09 3.84 to 9.84
Hemoglobin 10.5 10.8 to 13.3
Platelet Count 67 175 to 345

Jordan did fairly well today. I got here this morning around 9am, Donna had spent the last couple of days and nights with her. The Marinol helped her nausea quite a bit. She didn’t get sick at all today, and was in good spirits.

Day + 2

Day 2

Jordan’s Levels Normal Range
Weight 53.4
WBC 0.16 3.84 to 9.84
Hemoglobin 10.8 10.8 to 13.3
Platelet Count 32 175 to 345

Her blood pressure is fairly high today and Dr. Neider is going to give her Norvasc. She had this same problem during a previous chemo session when they gave her a steroid. Steriods seem to elevate her blood pressure, which is quite common.

She received a platelet transfusion today, the first of many to come until her counts recover.

Day + 1

Day 1

Jordan’s Levels Normal Range
Weight 54.8
WBC 0.33 3.84 to 9.84
Hemoglobin 11 10.8 to 13.3
Platelet Count 40 175 to 345

Jordan was given Cefapine today and within a couple of hours broke out in red blotches on her knees and elbows. It does not itch, but they suspect it is an allergic reaction to the Cefapine, which she has had many times before now. They gave her Benadryl to correct the reaction. The transplant will cause changes in her bodies reaction to numerous things, including allergic reactions to things she might not have been allergic to in the past.

She has very bad diarrhea which is also common during transplant. She tested positive for C-Diff which is a normal bacteria that we all carry around, but when you don’t have an immune system, it causes diarrhea.

She is still feeling terrible, lots of nausea and vomiting. She can’t keep any food down no matter how hard she tries. She’s losing more weight and she is resigning herself to having an NG Tube inserted into her nose that will go down to her stomach. They push nutrition through the tube and even some of her medications that are typically in pill form. They get them in liquid and use the tube instead of having her swallow it.

She did get a massage today, which she seemed to enjoy quite a bit.

She also got her first dose of Methotrexate today. This is a chemo drug that she will receive on Day 1,3,6, and 11. It’s a very small dose of only 15 mg used to suppress both her and the donor’s T-Cells to help prevent rejection.

Day zero - TRANSPLANT DAY!

We have prayed a lot for this day and continue to have faith that this will cure Jordan's illness.

Jordan’s Levels Normal Range
Weight 54.5
WBC 0.74 3.84 to 9.84
Hemoglobin 9.2 10.8 to 13.3
Platelet Count 51 175 to 345

Jordan’s counts have really dropped quite a bit now. She doesn’t need any blood products today for platelets or red blood cells.

Dr. Neider came in this morning and told us her transplant will be sometime around 1 or 1:30 today. They got a good yield and will be infusing her with 575 million stem cells.
They are also going to freeze 94 million stem cells in case she needs them later.

She is feeling better with the nausea, but is really down in the dumps emotionally. She was crying a bit this morning because she really doesn’t want to spend another 5 to 6 weeks in the hospital. We have to keep her busy, create a schedule and stick to it, even if she doesn’t want to.

The doctors and nurses have all told us how important it is for her to be as normal as possible, even though she cannot leave her room. She brought lots of stuff to do and now we need to push her to do it.

She has a stationary bike and yoga mat in her room. She did ride on the bike on Thursday and Friday, but hasn’t since then. Now that her nausea is under control, it’s time to get out of bed and get motivated. It’s easier said then done, but I think she will feel much better if she’s doing something and keeping busy.

We met another family last night that is a couple of doors down from Jordan. Their son Daniel Fernandez is getting his transplant today too. He is 19 and has ALL with the Philadelphia Chromosome. His donor is also un-related, it’s a 19 year old girl that came from the International Registry. I think Jordan’s donor must be in the U.S, because Mati never mentioned him being International. The only thing we know about her donor is that he is a 44 year old man with O Positive blood type.

The Marinol is really helping with her nausea. She also feels hungry which is a great sign. Making sure she eats well is also key to recovering from transplant. She doesn’t want to have an NG Tube inserted through her nose to her stomach and the only way to prevent that is to keep her nutrition up by eating regularly.

For some reason today, Jordan just is not excited about the transplant. She didn’t want her picture taken and just seemed like she didn’t want to participate in the excitement at all. I think she has a lot more anxiety than she will admit. She doesn’t really want to talk about it much and gives very short precise answers to all of us without any eye contact.

The infusion of the new marrow started at 2:15pm today. At 2:30 they slowed it down, because Jordan wasn’t feeling right. She started feeling warm and her throat felt like it had something stuck in it.

I talked more with Danny’s parents (Fernandez) today. We have so much in common with him and his family. He also presented with back pain prior to his diagnosis.

Donna stayed the night with Jordan tonight and will for the next couple of nights.

Day minus 1

Day -1

Jordan’s Levels Normal Range
Weight 55.6
WBC 3.07 3.84 to 9.84
Hemoglobin 9.2 10.8 to 13.3
Platelet Count 76 175 to 345


Today is Jordan’s last day of ATG. She started receiving FK506 today which helps prevent graft versus host disease. The FK506 will wipe out any T-cells she might still have and wipe out the donor’s as well so the new bone marrow doesn’t reject her body. There is still a big chance of getting GVH, but this drug helps minimize the chances.
She also started Diflucan today, which is an anti-fungal.

They gave her Marinol today for the nausea. It is a synthetic form of marijuana that prevents nausea and promotes appetite.

Day minus 2

Day -2

Jordan’s Levels Normal Range
Weight 56.2
WBC 8.77 3.84 to 9.84
Hemoglobin 10.2 10.8 to 13.3
Platelet Count 111 175 to 345

Jordan woke up this morning, feeling very tired. She had to get up every two hours last night, so she didn’t sleep very well. She is still feeling bad, but did finally drink some powerade and eat half a saltine cracker. They switched all her meds to IV if possible, but she still has about 4 or 5 pills that she has to take daily. They were concerned with her vomiting that she wouldn’t keep them in her system, especially the Dilantin to prevent any more seizures.

Day minus 3

Day -3

Jordan’s Levels Normal Range
Weight 55.3
WBC 3.35 3.84 to 9.84
Hemoglobin 10.0 10.8 to 13.3
Platelet Count 173 175 to 345

Chemo day 5 – Cytoxan and ATG

Jordan is done with the Busulfan but will still take Dilantin for 48 hours afterwards, to continue to prevent seizures.

She had a rough day today, for the first time this hospital stay she is now feeling sick and throwing up. She did each lunch today, but didn’t eat anything else.

The Cytoxan requires her to get up every two hours and go pee. Cytoxan is known to cause bladder and kidney problems, so you cannot keep urine in your bladder, it must be expelled every two hours.

She will get Cytoxan for two days.

They also give her other meds to prevent bladder and kidney problems. It seems that all the chemo drugs have some possibility of bad side effects and yet they try to counteract them as much as they can with alternative drugs.

ATG is the rabbit serum. This drug has to be pre-medcated because it can cause a severe allegric reaction. They gave Jordan Benadryl, Tylenol, Atvian and Solu-Medrol (a steroid) prior to giving her the ATG. The ATG runs over an 8 hour period and during the first hour the nurse stays in her room and monitors her vitals every 15 minutes and titrates the does, speeding it up until it gets to the correct volume to run over the 8 hours.

Jordan’s vitals were stable and she didn’t have an allergic reaction to the ATG. She did spike a fever at around 9pm. Her fever was 102.8. The fever is a normal side effect from ATG. They did draw cultures per procedure, but don’t expect them to be positive for any bacteria.

Day minus 4 - seizure

Day -4

Jordan’s Levels Normal Range
Weight 55.6
WBC 3.92 3.84 to 9.84
Hemoglobin 10.0 10.8 to 13.3
Platelet Count 185 175 to 345

Chemo day 4 – Busulfan (last day of Busulfan)

Jordan did pretty well today. She complained early on that she didn’t feel quite right. She felt a little dizzy when she would get up and at one point said she felt a little bit disoriented. Her stomach starting feeling sick this afternoon but she never became sick.

At about 12:30 tonight, Jordan got up to go to the bathroom. We had just settled in for the night after watching a movie. She was coming out of the bathroom and I was laying on my air mattress. I noticed she seemed to be getting closer and closer to the floor. It was hard to see, but there was just enough ambient light that I could see her. All of a sudden she fell to the floor. I jumped up and noticed she was having a seizure. I ran out of her room and there weren’t any nurses at the station. I ran to the other nurses station and found a single nurse entering a patient room. We ran back to Jordan’s room and found her nurse Denelle in the room too. Within about 20 seconds her room was completely filled with hospital staff.

The Busulfan commonly causes patients to have seizures. They give them a medicine called Dilantin to prevent seizures, but Jordan’s level of Dilantin was lower than it should be. They drew blood and determined her level was only 7.1. They gave her an IV injection of Dilantin of 500 mg and this brought up her level to 14.

She had been given 15 of her 16 doses of Busulfan when she had the seizure, so she only had one dose left this night at 3:45 a.m.

I didn’t go to sleep tonight I was so worried that she might have another seizure. Luckily, she did not.

Day minus 5

Day -5

Jordan’s Levels Normal Range
Weight 55.1 kg
WBC 3.35 3.84 to 9.84
Hemoglobin 8.6 10.8 to 13.3
Platelet Count 152 175 to 345

Chemo day 3 – Busulfan.

Today was uneventful. Jordan is still feeling very well. We got good news today. The PCR came back for the Philapdelpia Chromosome and it was negative. They were not able to detect the Philadelphia Chromosome in her bone marrow any longer. This means Jordan is in full remission, both from the Leukemia and the Philly Chromosome.

Day minu 6

Day -6

Jordan’s Levels Normal Range
Weight 55.5 kg
WBC 4.56 3.84 to 9.84
Hemoglobin 9.7 10.8 to 13.3
Platelet Count 171 175 to 345

Chemo day 2 – Busulfan.

So far, so good. Jordan had an exercise bike added to her room today. She rode on it a little bit last night and did 2 miles on it this morning. The staff tells us that they have seen patients recover quicker if they are active and eating/drinking. They don’t want her laying in bed all day, doing nothing. She is determined to have a quick recovery, so she’s trying to get into good habits early.

The IV team came tonight and replaced her dressing and caps on the Broviac. This has to happen every 7 days as normal routine, but if the dressing comes off, gets wet, etc, it will be replaced sooner than 7 days. The nurse didn’t have the best bedside manner. The IV Team, does just that, places IV’s, changes dressings, etc. The nurses here do not do them, unless an IV Team member cannot be reached quick enough.

Day minus 7

Day -7

Jordan’s Levels Normal Range
Weight 55.1 kg
WBC 4.35 3.84 to 9.84
Hemoglobin 9.6 10.8 to 13.3
Platelet Count 158 175 to 345

Chemo Day 1 - Bulsulfan. Dr. Petrovic came in this morning and checked Jordan out before allowing the chemo to start. Jordan is in great spirits, feels great physically and is ready to get the show on the road. She’s happy it’s all taking place during the summer when she doesn’t have any classes to attend for school. However, she did bring 4 self study Advance Placement books to keep her occupied. She brought lots of other fun stuff to the hospital too, video games, laptop, ipod, books, gameboy, etc. She definitely is not technology challenged.

Dr. Petrovic gave us a little history lesson today on the BMTU. Apparently the first BMT ever done was in 1968 by a doctor named Goode. He performed this transplant on a child who was having immune problems. (bubble boy is how she said people recognize his illness). He gave the child a BMT and that person is still alive and well today, almost 40 years later.

Dr. Goode began the BMTU at All Children’s Hospital many years ago. Other hospitals have used the BMTU at ACH as a model on how to set up their units because this one has been so successful.

We also learned some sad news today. One of the other patients from St. Joseph’s that we knew, passed away recently. His name was Ovi Mendez and he actually came to ACH for a Bone Marrow Transplant (sometime in May I think). He started his treatment for the BMT (his brother was a perfect match) but he died on Day 8. I’m not clear if he died on his 8th day in the hospital of Day 8 after transplant. He died of multiple organ failure. He body could not withstand the treatment. He had developed Cancer when he was a young child, and was in remission but relapsed after 8 years. This was his second round and he had been through a lot of chemo, radiation and had encountered many awful side effects prior to preparing for transplant.

His dad was the Chief of Pediatric Medicine at St. Joseph’s several years ago, but has since been in private practice. We had spoken to him and his mom Donna many times during clinic visits.

I wasn’t completely surprised to hear Ovi had passed away. I knew something must have happened because when we toured the BMTU as part of our preparation, Ovi did not have a room up here. This seemed odd to me since I knew patients spent at least 4 weeks in the transplant room and it had only been about 2 weeks since Ovi had started treatment. I thought maybe he was in ICU, but didn’t find out what really happened until I talked to a nurse at St. Joseph’s today. We will pray for Ovi's family.

Jordan started the Bulsulfan today. This is the first chemo drug during transplant and it lasts for 4 days. This drug does not make you sick or have any other side effects. You basically don’t notice any difference when you receive it.

They are measuring everything she eats and drinks. It’s critical during transplant to keep hydrated and keep your nutrition levels as normal as possible. She doesn’t want to get a NG Tube in her nose, so she is focusing on eating every meal to keep her nutrition and hydration levels up.

Transplant Process begins

Jordan was admitted tonight to All Children’s Hopsital Bone Marrow Transplant Unit. (BMTU) She will spend at least the next 4 weeks here. Depending on how well her transplant goes, she could get released as early as 4 weeks after transplant, or some patients have spent as long as 3 months in the hospital.

She is not allowed to leave her room. The room is a specialized clean room with positive pressure on the door to prevent outside air from entering.

She was admitted tonight so she can start her chemo first thing in the morning tomorrow. She has 6 days of chemo, a day of rest and then transplant day.

The count down for transplant is measured in days. We begin at Day -7 and then go through for the first year. Day 0 is actual transplant day and Day 100 is a huge milestone.

Her pre-transplant drugs are Busulfan, Cytoxan and ATG.

She will be taking many other drugs to counter the possible side effects for these three as well as many drugs to prevent infection, etc.

Broviac surgery

Jordan was admitted to All Children’s Hospital today for short stay to have the Broviac placed in her right side. She still has a double lumen broviac which means it has two lines that can run different medications or products at the same time without interfering with each other. The surgery went well, but she was quite weepy afterwards. She said when she woke up, she was disoriented and I wasn’t in the room. They made me wait in the short stay area and I didn’t get to see her until she was fully recovered from the anesthesia.

Transplant process begins

We are moving forward with the transplant and had a very busy month in May. Jordan had to undergo many tests and procedures to determine if she is a viable candidate for transplant.

We have been told that the long lasting side effects of transplant are that she will lose between 10 and 20 percent of her lung function and that she will most likely become sterile and will not be able to have any children. Neither of these side effects scared her too much since the alternative is death if she doesn’t get the transplant.

Sweet 16

Jordan turned 16 today. She is such an amazing young lady. I'm so proud of who she has become. She's always such a good girl and so much fun to be around.

She decided that she wanted to have a special birthday dinner at a Japanese steak house where they cook in front of you. We made reservations at Da Ruma in Sarasota and met Grandpa, Sharon and Mackenna there for dinner. Jordan invited her very good friend Jinele along too. We enjoyed the chef quite a bit, he had a good sense of humor.

Off to the ballgame

I received free tickets to a baseball game from work so Jordan, Noah and I went to watch the Tampa Bay Devil Rays play the Florida Marlins. It was a very exciting game and the Devil Ray's won at the bottom of the ninth on their last play of the game with a score of 4 to 3. Jordan really enjoyed the game, especially since it was at Tropicana Field which is climate controlled.

Islands of Adventure

Today we went to Islands of Adventure with the Children's Cancer Center. They provided free tickets for the kids, but I went along too. This was Jordan's first outing with the CCC and most likely the only one for a long time as we are preparing for transplant. She will not be allowed in crowded places for one year after transplant.

We teamed up with Brittany Bartle and her mom Linda. It was a lot of fun. We rode tons of rides, but stayed off the wild coasters as we weren't feeling up to that much excitment in one day.

Donor potential high

Jordan is still in the hospital. She feels great but her ANC is still well below 500, so she cannot go home yet. Today her ANC was 19.

I talked to Mati today to find out the results of the donor testing. She said they matched Jordan for 8 out of 10 markers and that Dr. Petrovich wants to hang on to this donor because the 9th marker that didn’t match is really not an important piece.

The 9th marker is for testing DQ and in the DQ it has 4 individual markers. The donor matches 2 out of the 4 and the other 2 normally aren’t tested by most bone marrow teams because whether they match or not is typically not relevant. This donor might be used to transplant Jordan’s marrow.

If Dr. Petrovic decides to move forward with this donor, they have to go through a series of tests and their marrow has to be worked up before it can be transplanted. This process takes about 4 weeks.

Jordan will probably go for bone marrow transplant somewhere between mid May and mid June.

Fever again

Went to clinic today for normal lab work and Jordan was feeling pretty bad. Her counts are way down because of the last chemo, as expected. She has needed platelets a couple of times this week already. She was running a temperature of 100.4 and Dr. Rossbach wanted to admit her because her counts were so low. He left it up to her and she decided to go ahead and get admitted because she figured she would hit 100.5 over the weekend.

About an hour later, while waiting for the platelets to come to the clinic, her temp went to 100.7, so she would have been admitted regardless on Friday. We were glad she at least got to spend 10 nights at home after the chemo.

Potential BMT matches

Talked to Mati (Bone Marrow Transplant Coordinator) today and found out they have activated 4 searches. This means that 4 people potentially match Jordan’s bone marrow. One of the four has already scheduled to come in on April 4th to have more blood drawn for further testing. The blood will be fed exed to Mati that same day, so she will receive it on April 5th. The test results won’t be back until the 11th or 12th.

Mati also mentioned they reserved a second cord unit for Jordan.

Chemo - Round two

March 21 - 28, 2006

Jordan had her second set of chemo this week. It was an 8 day protocol and she handled it very well. She was a bit nauseous, but otherwise fine. To our relief, we went home on the 28th as planned, without a fever spiking this time.

Frist trip to All Children's

Today was a busy day. We had a meeting at All Children’s Hospital in St. Petersburg. This is the hospital that will do the Bone Marrow Transplant. We met Mati, who will be Jordan’s transplant coordinator, Dr. Petrovic, and Bethany the Nurse Practitioner. We had a long meeting with this group to get a general first understanding of how a BMT happens. Jordan has to be in remission for 4 weeks prior to the BMT. She will be in the hospital for a minimum of 6 weeks and will have to undergo a High Dose Chemotherapy session that usually lasts about 8 days. At this time her body will be extremely sensitive to infection. The hospital rooms are high tech and don’t allow any outside air into the room and all items brought to the room have to be cleaned before they can be brought in. They have to be cleaned right outside of the room, by one of the people that work on the floor. We were given so much other information, it still needs time to be re-read and absorbed. I’m sure we will have many questions after it settles in a little bit.

They told us they have not yet found an unrelated adult donor, however they found a Cord Blood Unit that looks like a potential match and it has enough cells. She’s lucky she is short and only weighs a bit over 100 pounds. Cord cells are not usually used on teenagers or adults because there aren’t normally enough cells in the unit to supply someone’s body weight. This particular donor has over 3 million cells and Jordan needs 3 million for her body weight. We are crossing our fingers that this cord unit will work. Dr. Petrovic likes to have two cord units, one as a back up, just in case. They have reserved this Cord Unit for her and will continue to look for other donors until she is ready for transplant.

After the visit at ACH, we had to go to Jordan’s hospital (SJH) to have labs done. She hadn’t had labs since she went home on Sunday, so we needed to find out if she needed platelets.

Our biggest news of the day was that Jordan is actually in remission. The test from the bone marrow aspiration from last Wednesday was negative for Leukemia cells. The results on the Philadelphia Chromosome are not back yet. She technically has to be in remission for both the Leukemia and the Philly Chromosome to be in complete remission.

Her labs came back and her platelets were 60. We were so surprised. They have to be greater than 75 to start chemo again. They set up an appointment to come back Friday morning for labs one more time. They expect them to be higher than 75 on Friday and they have already scheduled her for her second set of Chemo to start next Monday, March 20th. This next session will last 8 days and the only new drug that will be added is Gleevec. Gleevec is a fairly new drug that specifically targets the Philadelphia Chromosome. We are excited about this drug because we have been told by several doctors that it has revolutionized the treatment of Cancer in this situation.

This next set of Chemo is not the 8 days session before transplant. They now have to keep doing Chemo to keep her in remission until she goes to transplant. She cannot have the BMT until she is in remission for 4 weeks and has a suitable donor.

Discharged

48 hours later, she was discharged to go home. It was an uneventful hospital stay, they did blood cultures, which is normal protocol if they are admitted for fever. Her blood cultures came back negative and she didn’t run another fever since Friday, so she was free to go home. She has to go back on Tuesday to clinic to check her labs again to see if she needs more platelets.

Fever again

She had a clinic appointment today. She has to go back to the hospital and have blood drawn for her labs. For the past couple of weeks she has needed platelet transfusions nearly every other day. When her platelets drop below 20, she requires a transfusion. Her labs came back and she needed platelets, so she stayed at the Clinic for the transfusion. During this time, she spiked a fever of 101.7, so they admitted her back into the hospital for a mandatory 48 hours. She was not at all happy, considering she only just got out of the hospital on Wednesday.

Home finally after 35 days

Week of Feb 29 - March 8

Not too much to report during this time. Jordan continued to struggle with fevers and ended up on three different antibiotics that finally corrected the problem. On Sunday, March 5th, she got a day pass and went home for about 5 hours. This was a nice break for her, she really needed it. She continued to improve over the next couple of days and finally got discharged to go home (after 35 nights in the hospital) on March 8th. Discharge instructions are specific. If you run a fever of 100.5 or higher you get readmitted. This is a tall order, as in anyone else we would not consider this a fever at all. But when your ANC is low and you don’t have any white blood cells to fight infection, it becomes critical and should not be taken lightly. The doctors are most concerned about her becoming Septic. Sepsis is some kind of bacteria in your blood that attacks your internal organs, and its deadly most of the time. By coincidence my company deals with a lady from another company and her healthy 12 year old daughter collapsed at school this week and was taken by air to All Children’s Hospital where she was diagnosed with Sepsis. She only lived 24 hours.

Jordan had a bone marrow biopsy done today to check and see if she is in remission. We should get the results back early next week. Dr. Rossbach did the procedure and said it was a quick draw, which normally indicates the bone marrow is healthy. When the bone marrow is full of Leukemia, it is difficult to pull it from the bone because it sticks. Since her bone marrow came out so easily, he is fairly certain she might be in remission.

After Dr. Rossbach did the procedure, he talked with Danny and me to let us know that they have changed Jordan’s diagnosis. She actually has CML instead of AML. (Chronic instead of Acute) They feel they caught it during a Blast Crisis Phase and say the original diagnosis of AML was because it was masking itself due to the blast crisis. The reason they are sure it is CML instead of AML is because she has the long Philadelphia Chromosome instead of the short one. There are no known cases of anyone having the Long Philadelphia Chromosome with AML, it is always associated with CML. Her treatment doesn’t change, but the fact that she needs to have a Bone Marrow Transplant is no longer an option, it is the only way she can survive CML. I also found out that I am not a match for her bone marrow, which means we now have to look for an unrelated donor. This can be people who are actually related, but are labeled as unrelated because they are not a parent or sibling to the patient.

We did find out that Blood Type doesn’t matter in being a Bone Marrow Donor. This opens up the possibilities even further, but matches are harder once you have a different ethnic background. There is less donor pool to find a match.

CML has three phases, the Chronic Phase, the Acute Phase and the Blast Crisis Phase. The Blast Crisis Phase is the most severe phase.

Jordan case is now reported. Her doctors cannot find any other doctor in the nation that has had a case like hers. Her entire presentation with back pain to this point is unique.

We got home tonight (March 8th) and Jordan was still a bit nervous but she did okay, until she took her temperature and it was 100.7 She had just woken up, so I asked her to unwrap herself from her blanket and sit in the family room where it was cooler. Her temp immediately dropped back down under 100. I think she was just warm from sleeping and being bundled up. I must have gotten up and checked on her 4 or 5 times that night to make sure she wasn’t actually running a fever. Thankfully she was not.

I just want to go home

Jordan had Tylee again today. It’s been awhile since she has had Tylee as her day nurse. She was very excited. By the time I got to the hospital this afternoon, Tylee said Jordan had a bad day. She wants to go home so bad and is stressed out that she’s still her. Her acid reflux is really acting up, we suspect because of her stress level. Tylee said there were a lot of tears today. It was a tough day for Jordan.

The night was tough too. She was awake a lot and started throwing up again because her cough is bad. She isn’t nauseous, it’s all because of the cough.

She is getting a few sores in her mouth again.

Meet Theresa

Jordan’s day was a bit better today than yesterday. She had Teresa as a nurse today, for the first time. She really likes Teresa. Teresa has two teenage daughters, so I think she can relate fairly well to Jordan.

Fever breaks

Jordan was supposed to start her telecourses today, but the Homebound school is closed this week because the students are taking their FCAT tests. This was disappointing to Jordan because she was looking forward to the diversion of school. She was hoping it would take her mind off of the hospital stay.

She stopped running a fever yesterday afternoon. We’ll keep our fingers crossed that it stays that way.

Courtney goes home - Jordan does not

Week of Feb 20, 2006

This week was pretty much the same as last week. Jordan continued to run a fever and they added a second antibiotic to combat the fever. Her counts are still low to non-existent. She cannot leave the hospital unless she is fever free and has a count of at least 500.

Roger brought Madison and Noah to see Jordan on Saturday. They stayed for a couple of hours and painted a poster board with Jordan.

We also shaved Jordan’s hair off this weekend. It was matted and falling out so she decided she wanted to shave it off. Having it fall out by itself caused her scalp to be very sensitive. I’m amazed at how much her scalp actually hurt during the process of her hair falling out.

Her Geometry teacher from the Homebound program came by on Saturday afternoon.
None of us really like him much. He was very pushy and kept butting in while she was trying to work through a problem. She was quite aggravated at his method of teaching.


She received a transfusion this Saturday of 2 units of blood because her red blood cells were low. Lack of red blood cells causes anemia, which makes her tired, moody and gives her a headache.

The hardest part of the weekend came when Courtney got to go home. This upset Jordan quite a bit because Courtney is someone she can talk with and now she’s not here. Courtney gets to do the rest of her Chemotherapy as an out patient through the clinic, as long as she doesn’t run a fever. Jordan understands that Courtney has a diagnosis that is completely different and therefore the treatment is different, but it was still hard for her to see Courtney go home after a week, when Jordan has been her for almost a month.

We also found out on Saturday that Danny and Jason are not a match for Jordan’s bone marrow. My blood is still being tested. I’m hoping mine matches, so she can at least receive a related match.

Fever continues

Jordan is still at the hospital because she is running a fever. Dr. Tebbi came in this morning and said she is getting sores in the back of her throat. Dr. Tebbi is certain that she was throwing up blood because she has sores in her esophagus, throat and maybe her stomach.

At least we now know why she was throwing up blood.

Jordan had Miriam again today as her day nurse. She’s not real crazy about Miriam. Miriam doesn’t have a lot of bedside manner. Jordan is used to the nurses being very sensitive to her and making sure she’s okay. Miriam is more the type that is all business. She does what needs to be done, but doesn’t go any further to talk with Jordan. Jordan is hoping that Tylee will be her nurse again tomorrow.

She had Dana as her night nurse tonight. Dana was new to us, but told us she was very excited to be taking care of Jordan. She had heard many nice things about Jordan, especially that she is an easy patient. I imagine they get all kinds of patients here and the little ones are terrified of the nurses, so they make their jobs tough. They squeeze their eyes shut because they don’t want eye drops, etc.

A new patient named Courtney came in on Friday (I think). She is next door to Jordan. She is 13 years old and has Lymphoma. I hope her and Jordan strike up a friendship, so they each have someone to talk to besides their parents.

I was walking back from the kitchen area today and a new boy was on the floor. He had on handcuffs and leg shackles and was walking around with two guards. Tylee said he is a juvenile offender and he’s here for treatment, just like the other kids. I never really thought about what kids would do for treatment if they were in a juvenile detention facility – I guess I know now. They come to the hospital too, but with guards.

By the end of the day Jordan noticed sores popping up in her mouth. They are quite painful and she has two medications she’s taking to help ease the pain and get rid of the sores. She cannot eat anything because it feels like it gets stuck in her throat. This is a common effect of the sores.

She had to have Dana crush all her medications and mix them in cherry syrup so that she could take them. She can’t even swallow pills anymore because of the sores.

Mouth sores

Jordan ran a fever on and off all last night and was given Tylenol every couple of hours to control it.

When she got up this morning, Dr. Tebbi visited her during his rounds. She was feeling okay at the time, but shortly afterwards, she started complaining about chest pain again. They are fairly certain this is all related to acid reflux. However, Dr. Tebbi came back to see her again and prescribed a medicine to take that controls yeast in case she has a yeast build up in her esophagus. Her feels like the Tums, Pepcid and other medication should be giving her relief.

She took more magic mouthwash and tums at the same time and it seemed to give her quite a bit of relief for awhile.

She threw up blood a couple of times this morning. Dr. Tebbi ordered a CT Scan of her stomach and esophagus to make sure there isn’t a problem that would cause her to throw up blood. They were not surprised that she threw up blood as it sometimes happens because the Chemo attacks the body in such a way, it can make the stomach and esophagus become very raw.

Verla came in and weighed Jordan around 8pm. She weighs 48 kgs, which is 105.6 pounds. This is almost a 3 pounds loss from yesterday. Total weight lose of 21 pounds since January 28th.

Carlee had a day pass today to go home for a few hours. Her mom was so excited. She wanted to take her to the movies, but the doctors said no. It’s too risky. She is finally eating and not in pain anymore. These doctors do amazing things on this floor.

She continues to have diarrhea pretty bad. Between this and throwing up, it’s no wonder why she continues to lose weight.

Spiked a fever

I didn’t go into work today because we were expecting Jordan to be discharged and go home. Unfortunately, we didn’t get the news we were hoping for. Jordan had a rough night last night, and wasn’t feeling well.

She was running a mild grade fever all morning, just teasing at the magic number of 100.5 She had 100.3, 100.1, 100.4 The rule for admission to the hospital is a fever of 100.5 Since she was dangerously close to the fever rule, they wouldn’t let her go home. They felt she would just end up right back here tonight or tomorrow if they let her go home.

Needless to say, this was disappointing, but we understand the risk and appreciate the doctors not taking the chance.

She also was having a lot of chest pain so they ordered another Echocardiogram and an EKG. Both test turned out normal, so they are fairly certain all the chest pain is related to acid reflux.

They called in a consult from a GI doctor to make sure it is acid reflux. The doctor felt very strongly that this is the case and ordered Pepcid to be given to her in the IV instead of the other medicine that was given by mouth.

They took blood for cultures to see if there is any reason for the fever, other than the Chemo AraC.

Initial blood results so no issues, so they believe it is related to the Chemo.

Her port bled out today, so they removed the dressing and cleaned it up. I think it was bleeding because she was sleeping on her left side, which puts pressure on the port. Since the port is accessed right now with a needle, there is an open space where blood can seep out. The nurses think that might also be the case, but they don’t take any chances and have been looking at the port again several times today to see if it bleeding any more. So far, it has not.

Her day nurse was Kim today. Tylee was off. Dani is her night nurse and came on at 7pm. By 8:30pm, Jordan was running a fever of 102.9. It’s interesting how the doctor’s nailed that one. I guess they have been doing this long enough to know it would have happened and we would have been right back in the hospital tonight if they had discharged her.

Her blood counts have taken a nose dive since Wednesday. She essentially doesn’t have any white blood cells. She is now in the danger zone for the next 7 to 10 days. Highly susceptible to all illnesses, colds, cough, etc.

They also gave her Magic Mouthwash today for the first time. They are concerned that she might have sores in her esophagus and they cannot put a scope in her mouth to check on it because her counts are too low. She has to swish and swallow the mouthwash, plus they gave her another medication to promote healing of the esophagus.

She was taken off the blood pressure medicine today. Her blood pressure is now stable since they discontinued the Decadron.

When we saw Dr. Obzut today, we asked a bunch of questions in anticipation of going home.

Jordan cannot change the paper in her bird cages and Dr. O would prefer the birds not to be in her room, because they molt and stir up bacteria in the air. She cannot change the cat box for the same reason, it makes the bacteria air born and she is too susceptible to infection. (not that I had any worries about her wanting to clean the cat box) The cat can sleep with her without any risks, but no kissing the cat.

She cannot wear her contacts, because of the risk of introducing infection into her eyes from her hands.

She cannot go to the dentist or pediatrician offices.

There is still some talk about putting her on birth control pills to prevent her from having a period. When her platelets counts are so low, they cannot risk her losing blood. When platelet counts are low, patients normally have to get blood transfusions.

I learned something new about the platelet counts. I was confused by the numbers given to me earlier. I was told that normal counts are around 150 to 450 and that Jordan’s were at 2.4 million. The 150 to 450 number is actually 150,000 to 450,000. Today her count is at 411,000, normal level, but high considering she has had 10 days of chemo, yet not really high since they were 2.4 million. She could afford to lose them and it has left her at a safe range for now. The next Chemo session will probably wipe them out.

I had a chance to look up the “Philadelphia chromosome” on the internet today. Most of what I found is that it is normally associated with CLL, not AML, so there now could be some discussion about where the diagnosis if correct. There have been documented cases of AML-M7 with the Philly, but it seems to be rare.

Dr. O said she will talk to me on Monday in more detail. She wants to sit down for about an hour to discuss where we are and where we are going with the treatment. She also wants to give me more information about the Philly, so that I can better understand the impact of it.

We found out today that Tylee (one of Jordans favorite nurses) is actually being treated for Thyroid cancer. She recently had her thyroid taken out and is still testing “hot”. We never would have had any indication that this was true, except another nurse told us.

I think this gave Jordan a bit of hope, because Tylee looks great, and it is not at all obvious that she is going through a similar situation.

Last night Jordan told me she loved this place. I thought the nurse must have given her some drugs that were making her hallucinate. I laughed when she said this and reminded her that just the other day she couldn’t wait to get out of here. This is still true, however she has really developed a friendship with these nurses and she totally trusts them with her care. They treat her will respect and involve her in her treatments. They listen to her feelings about the effect from the drugs and take her seriously when she says she doesn’t want to have a certain drug again because she doesn’t like the way it makes her feel.

This only impacts the extra drugs of course. She doesn’t have any say on the Chemo drugs, but does on things like Benadryl, Motrin, etc.

Since she was running such a high fever tonight, Dani took more blood cultures, a urine culture and a throat culture. Dr. Tebbi is on call and he’ll have everything checked to see if there is any sign of infection, especially since her counts are so low.

I have to admit that today is really the first day that Jordan looked “sick” to me. She has had some bad days, but today, I could see it in her eyes. That look your child gets in their eyes when they run a fever or have the flu is the same look she had all day today.

The nurses are amazed at how well she is actually taking the treatments and we can’t imagine how much worse it must be for others, because it is quite hard on Jordan. We are grateful that she is tolerating everything well, based on what the nurses and doctors tell us.

Last day of Chemo for round one

Chemo - Day 10

I went to work again today and was gone all day this time. Leah from Child Life spent a bunch of time with Jordan today. They watched some movies and just hung out. Jordan had a fairly good day.

Tonight is her last night treatment of Chemo this trip. She only has one more dose in the morning.

Jordan’s World History teacher called today on my cell phone. He said the kids in the class made her a card and he wants to send it to her. Since she is supposed to get out of the hospital tomorrow, I gave him our home address. It turns out he actually lives in our neighborhood.

Suddenly this place is hopping with patients, all the rooms are full. Natalie is still here too. We met her and her parents the first night Jordan was admitted. Natalie is a 13 month old girl who has some type of Cancer. When Jordan got moved to this floor, Natalie had already been here for 45 days straight. She has already had one surgery to remove her left kidney because of a tumor. She was supposed to have surgery on Wednesday to remove a tumor in her left lung. They will also be removing half of her lung. Her blood counts are not high enough for surgery, so it has been postponed.

Jordan is still having the problem with the heart burn. They have now tried other things, but they all only give her a few minutes of relief.

Her chest X-ray was negative and her lungs are clear.

She got weighed tonight (they do this every night) and she only weighed 49.3 kilograms, which translates to 108 pounds. She has lost 10 pounds in two weeks. When she was admitted to the hospital she weighed 118 and two weeks prior to that she weighed 126. Total weight lose at this point is 18 pounds. She is looking thin now. Her collar bones, shoulder blades and hip bones are more prominent.

Can't wait to go home

Chemo - Day 9

We are still expecting to go home on Friday. She gets her last Chemo for this Induction Cycle on Friday morning at 10:35 a.m. She will be able to go home if she isn’t running a fever and has a general sense of well being.

She was sick again a couple of times today. The Chemo seems to be causing this since she is no longer on the Decadron. The Decadron helps with nausea, but was causing the high blood pressure.

She also hasn’t had a bowel movement in about 5 days. This is causing her a great deal of discomfort, plus she is having terrible acid reflux, which is causing her to have heart burn. She is complaining about the heart burn a lot, so they gave her a pill to help ease it.

They also gave her something to help her go to the bathroom.

She also has a nasty cough that has been persistent for a few days now. They sent her down stairs today for a chest X-ray to make sure she isn’t coming down with anything.

She had a tough night today, very emotional. She didn’t want to get out of bed, wouldn’t take a shower. She seems to be feeling a bit depressed. Pam and Dani have been her night nurses the last week or so. They are wonderful and very protective of Jordan. Pam seems to be able to get her thinking a bit more clearly and tends to have some luck bringing her spirits back up.

No more Motrin, it has been discontinued. She isn’t complaining about back pain, which is a good sign. It means the Chemo has worked on the tumors and they must not be pressing on her back any more. Thank goodness. This doesn’t mean she is in remission yet. But at least she is relieved of the pain.

Happy Valentine's Day

Chemo - Day 8

Valentines Day. Madison and Noah drew Jordan cards, it was very sweet. Roger brought the kids to see Jordan. He also brought roses for her and I, with cards. It was very nice.

I went to work today again, until about 3pm. Jordan is doing fine by herself during the day. Today she went down to the lobby for a Valentine party. She went with Trisha from Child Life and they had two little boys make the trip with them. Jeffrey and Jonathon are both about 4 years old.

Jordan’s blood pressure has continued to stay high. They have given her medication to bring it down. They are also going to stop the Decadron because they believe that is what is causing the high blood pressure.

She did vomit several times today. Her blood counts are still fairly stable at this point, which is a surprise to the Doctors after 8 days of Chemo. They expect them to plummet in the next day or two.

There is talk of stopping the Motrin now too. They need to see if Jordan is running a fever at all, because if she is, the Motrin is masking it and they are not aware of it. She really shouldn’t need the Motrin anymore because the Chemo should be dissolving the tumors on her back that were causing all the pain.

We met the Homebound teachers that work at the hospital today. We should be hearing from Jordan’s actual Homebound teacher by the end of the week.

Jordan’s principal called again today and talked with her this time. He called sometime last week, but I didn’t write it down.

Jordan met Melodie today. She is a girl about her age that also has Leukemia, but she has ALL. She came in for Chemo. Tylee introduced them to each other. I’m hoping Jordan will make some friends while she is here. As of right now though, she is not interested. She doesn’t want to be associated with other sick kids, because she says everyone will know she is sick too. I think in time her feelings will change about this, but you cannot rush her into acceptance. It will come when she is ready.

I met Debbie (Carlee’s mom) tonight. Carlee is a four year old little girl who was diagnosed with ALL (another form of Leukemia) on January 11th. She was admitted to the hospital that day and hasn’t been able to go home yet. She has suffered from every possible side effect that can occur from Chemo. Right now she has some sort of infection in her intestines and hasn’t been able to eat or drink anything for over 2 weeks. She is getting nutrition through an IV. Her mom said the Doctors tell her this condition is extremely painful, which explains why Carlee is hooked up to a Morphine PCA. We have seen them walking the halls occasionally and Carlee complains or cries during the entire walk, because she is in pain. Debbie said that Carlee had a bunch of bruises on her legs one day and within a couple days they were gone, so she didn’t think much of it. But on a Monday morning, Carlee woke up with an enormous bruise covering her elbow. She didn’t go to bed with it, so Debbie knew something wasn’t right. She went to the doctor and the doctor felt her stomach and said her spleen was enlarged and when he looked into her mouth, it was completely white. She didn’t have any red blood cells. She was admitted that day and was quickly diagnosed with ALL. She is in remission now and still has all her hair. They just need to get rid of the intestine infection so she can eat and drink, which will allow her to go home.

Moved to a larger room

Chemo - Day 6

She didn’t get much sleep last night because the 10 hour Chemo session is interrupted quite a bit. During the 4 hour DAUN IV drip, her blood pressure has to be taken every 15 minutes. We are hoping that during her next cycle, they will do these long sessions during the day instead of at night. At least her nights should be more peaceful, even though she still gets woken up every four hours for vitals and eye drops.

The rest of this week should go smoothly, as she will get the GMTZ today and then she only has the AraC pushes for the next four days.

Hopefully the aching in her legs will subside. Her back pain seems to be diminishing and she mostly complains about her legs aching. This is a common side effect from the Chemo and it seems to bother her quite a bit.

Her nurse Tylee removed the needles from her port today and left them off for a few hours. The area from the port looked like it is healing nicely. She actually has two ports under the skin. They put in two of them because when she went into surgery they were still going with the notion that she had bone cancer. Bone cancer requires two ports for treatment. When she goes home they will take out the needle and you won’t really be able to tell she has the port under the surface. It will be noticeable to her and anyone who looks closely, because the skin rises up just a bit.

When Tylee accessed the port again, she only put in one needle, since they only need one to treat Leukemia.

They moved us to Room 233 today. It’s a much bigger room and has enough space to allow for a blow up air mattress if I want to bring one to sleep on. I’ve been sleeping in a recliner, next to her bed this whole time. It’s comfortable enough, and I’m able to get a good amount of sleep, even through all the interruptions with the Nurse’s taking her blood pressure and temperature.

Chemo continues - Day 5

Chemo - Day 5

Dr. Rossbach came in this morning during his rounds. Jordan expressed that she has a persistent cough, which he says is symptomatic of the Chemo, but that if it doesn’t get better by tomorrow, he’ll order a chest X-ray. Jordan asked him if she’d be able to go home after day 10 even if she still has this cough, thankfully he said yes. She would have been very upset if he would have said no. She is very anxious to get out of the hospital and is focusing on Friday as the day she gets to go home.

He also mentioned that she has a Herpes type virus in her blood that is normally associated with cold sores in the mouth. He says her body is fighting it fine, but since her immune system will be suppressed, he’s going to give her a medication to fight it off.

Mouth sores are common in patients that are undergoing Chemo. Mouth care is essential in preventing the sores from appearing. Some people get mouth sores all over the inside of their mouth and they have to use “magic mouthwash” which has lidicain to ease the pain.

Tonight is Jordan’s last night of 10 hour Chemo for this session. For the next five days she’ll just get the AraC push every twelve hours and tomorrow she gets one new drug which she hasn’t had yet.

This new drug, GMTZ, is a fairly strong poison that attacks the cells with Leukemia. Dr. Rossbach used to work with the doctors that invented this drug and he says that one dose if plenty. They used to give patients about 18 mg of it and now they only give them 2-3 mgs.

Dr. Rossbach described it by saying that Leukemia cells have this outward structure, like a nose on a face. This drug GMTZ, attaches specifically to cells with this “nose” structure. Unfortunately, some patients have a similar cell structure on the cells of their liver and those cells also get attacked, even those they are not Leukemia cells.

Since they now give a much smaller dose of the drug, they don’t really see patients having liver problems any longer. Jordan should be fine and can expect not to have any side effects from this dose.

In reviewing her protocol today, I noticed that the next cycle of Chemo is only an 8 day session instead of 10 days.

Jordan will finish up this 10 day cycle on Thursday and should be able to go home on Friday. Friday will be day 11 and she’ll have to return on day 29 which is March 7, 2006. If she only stays in the hospital for the 8 days of treatment, she should be able to go home on March 15. At this point, we don’t know what day the third cycle will start.

Family goes home to California

Chemo - Day 4

Day 4 Chemo is the same as Day 2. She only had a push this morning at 10:35pm. Donna, Tom, Danny, Jody and Jason all left today to fly home. Donna and Danny plan to fly back when Jordan starts her next session of Chemo. Donna was heartbroken when she left. She so badly wishes she could be here the whole time.

Jordan still has a knot in her back where they did the bone marrow test. It is like a bruise under the skin and it bothers her a little bit.

Jordan walked a couple of laps around the floor to stretch her legs. We also took a wheelchair ride down to the cafeteria because she was feeling hungry. Unfortunately, the ride to the cafeteria upset her stomach and she wasn’t feeling well for about an hour or so afterwards.

Dr. O told her the other day that she has to use an electric razor to shave her legs and armpits because she cannot risk a cut while shaving because of the possibility of infection. Once her white blood cells go down, she won’t be able to fight off infections, colds or other illness. Running a fever will become very dangerous for her and needs to be taken seriously.

We met Dr. Rossbach today when he was making rounds. I briefly met him yesterday, but Jordan hadn’t seen him yet.

Dr. R told us a couple of interesting facts about Jordan’s Leukemia. First of all, she has a very rare sub type called M7. Normally this sub type is only seen in patients who have Down Syndrome. He teased Jordan a little bit and said she obviously didn’t read the manual before she came down with this, because she isn’t supposed to have M7.

Another interesting thing he told us had to do with her receiving bone marrow from Jason. If Jason is an exact match and we do the bone marrow transplant, her blood will from that point forward always indicate her as a male. It doesn’t change her characteristics at all, but her blood will be coming from the male bone marrow, which produces male blood cells, red and white. He told her that if she ever tried to enter the Olympics that they wouldn’t let her classify herself as a girl, because the blood tests would say she is a boy. I’m guessing that she would have to provide proof of such to be able to qualify. (She doesn’t have any Olympic ambitions, so we don’t expect this to be a problem.) This is true for any person who receives bone marrow from the opposite sex.

Dr. Tebbi and Dr. Wynn also came to see her today and told us they got back the results of the genetic testing and it showed a genetic factor to the Leukemia. I don’t totally understand what they were explaining and I’ll wait for Dr. O to come in next week and tell us again. They mentioned that this genetic result explains something to them, it seemed an important piece of the puzzle and that they will most likely administer an additional medicine that deals with this specific factor.